Two And A Half Years Later…

It has been a long long time since my last post and I am pleased to say that isn’t because I have been too poorly to write anything, quite the contrary…

Life since explant has been a bumpy journey. There have been really dark dark days, where I struggled with the idea that my implants were the true cause of my broken body,  battling with the uncertainty of how my health would be from one day to the next as the pain bore down on me physically and mentally.  I have cried many buckets, spent hours in the bath soaking my pain ridden body and felt the urge on many occassions to leave this life. I have powered through the pain to get my children fed, sort their laundry and cart them from A to B with a fake smile on my face so they weren’t to know the true depth of my silent suffering. There were also days where I simply couldn’t hide it, too mentally exhausted to cope.

Then there were the amazing days where I felt empowered that I had made the right decision to ignore the rheumatologists and doctors warnings / pushy advice. Lapping up the incredible feeling that I was winning and making headway in my healing and enjoying  being ‘me’ again. Having more energy than I knew what to do with and regaining my confidence to actually make plans and… have FUN!!

Looking back now, the first year was definitely the worst year. That light at the end of the tunnel was so so tiny but this is what I focused on intently when the days were crappy.  I also had a rather large point to prove, to Dr X and any other doubters, that I knew my body better than them, that was for sure. Sometimes that annoying competitive streak comes in handy…

The second year went by quite quickly even though I was still nervous and untrusting of my body. We certainly had a love/hate relationship. I always worried when it was going to let me down again, shove me in bed or scupper plans I had been looking forward to. When these moments arose, I always then looked back at what I’d had to eat and drink previously. Had I not slept properly? did I do something different from the day/week before that had triggered this? It took me a long time through trial and error, to realise that actually, food wasn’t my foe. It was such a relief. I started eating again without the fear of what might happen. Don’t get me wrong, I still make sure I have certain vitamins and minerals, as after completing my first year of a Nutritional Therapy degree, I was far more aware of how to keep inflammation at bay and give my body what it needs to heal.

Then I started to travel again. Alone. Without my family there to support me. This was HUGE. All the fears came back. What if I was unable to walk or couldn’t dress myself because my arms felt broken??? I simply had to stop feeding the gremlins in my head, trust myself to move forward, and it really did pay off.  Even though I had a niggle here and there, I coped AND I was actually living again. I even took my daughters, on my own as my husband was working, to Spain for a week. It was incredible. This was a massive turning point for me. The more I started to trust my body, the more we started to have a mutual respect for each other.

So now here I am two and a half years on. ALL my symptoms are GONE. I occasionally get some tendon pain, a bit like tendonitis. It can be in my hands or in my shoulders. This is definitely significant with my ‘lady time’ as I have subsequently found out that I am peri-menopausal. My mother was very young also when she went through her menopause and so I am confident that the two are connected. I very rarely take Naproxen. Maybe one or two around the monthly cycle pain. My next appointment with rheumatology is in February 2019. I honestly think I will be discharged. Which would quite simply be the best start to the rest of my life, EVER!!

I should have now been on Methotrexate, a chunky chemo drug for RA, for nearly 3 years. Can you imagine the state I would be in if I hadn’t listened to my inner guide, my gut instinct? I honestly don’t think I would be here any more. I had never felt so ill as I did Christmas 2015. I was walking like an old woman, hunched over and shuffling around. I had no energy, no sparkle whatsoever.

But now, there is no stopping me. I am a bundle of energy (bar the ladytime!) and having healed myself through changing my diet, having my gut and hair mineral analysis (so I knew what truly was going on inside me), lymphatic drainage, remedial massage, saunas and most of all holding on (sometimes by my fingertips) to the faith that I could heal myself because no one knows my body better than me and I have just proved that.

The one other amazing tool that has really helped me along my journey is a breathing technique introduced to me by the wonderful Rebecca Dennis and her beautiful book ‘And Breathe’. Transformational Breathworks is an incredible healing tool that helps your body to detox, heal and integrate past traumas that you have been through. I worked closely with Rebecca facilitating my breathing sessions in London and then attending workshops and retreats. This has been the final piece of the puzzle my body needed to fully recover from the stress and trauma my implants and the long journey to health had caused. I will write more about this beautfiul breathing tool in another post.

For anyone reading this post, that is just starting their healing journey, have faith in your gut feeling. Just trust that even though the light at the end of the tunnel is really bleak at times, I promise it will grow brighter with time and eventually you will emerge into the brightest, whitest light possible and like me will probably not even realise it at first, until you get the comments flooding in of ” you look incredible and so healthy” … thats when you will truly know that the journey is near the end.

A x

Anti CCP Count Round 4

It took two weeks to get an appointment with  Dr D to ask if I could have blood tests for my CRP and ESR (which are inflammatory markers) and another Anti CCP count & rheumatoid factor (which is specific to rheumatoid arthritis).  I explained the reasons why I wanted the blood tests, that I had issues with my wrists, that they had been quite sore and tender for months now and I wanted to check all my levels and make sure that the disease wasn’t active in me.  She  was brilliant as always and gave the go ahead for all the tests to be done.

It took a further two weeks to get an appointment with the phlebotomist, which was my choice as I wanted to avoid the other stabbing (but lovely) phlebotomist at all costs, it was seriously traumatic experience that has haunted me ever since. This gave me time to ramp up my positive affirmations, which I had been saying most mornings in the shower for the last 10 months.

I am so happy and grateful that my anti ccp count is within normal negative range

On blood test day, I told my lovely non stabbing phlebotomist what I had been manifesting and so she also blessed my blood viles. To anyone in the outside world, we must have looked like a couple of nutters, but I came out of her room feeling positive and ready for whatever the universe had planned for me.

Tuesday 7th February 2017 – 10:30 am

I was going to the doctors surgery in the morning to collect my next iron prescription and decided to ask the front desk if they could let me know if my results were in. My GP surgery has a rule about results. To phone and after 14.30!! But the lovely receptionist said as I was there she may as well give them to me. I started to get all nervous…

ESR    5     normal range 0.00-12.00

CRP  <1    normal range 0.00 – 10.00

Both completely normal!!! This meant that even though I have pains in my wrists, my body is not registering it as inflammation. THIS IS GOOD….

I asked about my Anti ccp and rheumatoid factor.  The receptionist told me that my anti ccp and RF was 97.5. This left me confused. Was it my RF factor or my Anti CCP? She told me she wasn’t medically trained and couldn’t tell me.

I left feeling a little excited but also confused. If that was my anti ccp count, it was an amazing result. If that was my RF count, it was NOT good.

14:30

I had travelled to London by the afternoon for a Breath Works session with Rebecca Dennis. My appointment was at 15:00 and so just before I got on the tube at Liverpool Street Station,  I decided to call the surgery again and ask if they would just re confirm my numbers. As I called, I was surrounded by people in a rush to get to their destination. With one finger in my ear to keep the sound of the noisy train station out, I asked the lady on the results line to give me my results again.

ESR and CRP the same.

YAY.. and my RF or Anti CCP I asked. She told me there was no RF test done, just an anti ccp count. My heart was racing, tears started to well up because  I already knew the answer. Everyone in the station just became a blur and the noise disappeared as she read out…

Anti CCP is raised –    97.5     normal range 0.50 -5.00

OH. MY. GOD!!!! I HAVE ONLY BLOODY DONE IT

My last Anti CCP count back in July was 284. I had dropped a staggering 186.5 points.

As I went to get on the tube,  I was like a cheshire cat.. grinning from ear to ear. Nothing could take away this feeling of accomplishment.


FEBRUARY 2016

Lets just go back shall we to the last time I saw the wonderful Dr X, my ex- rheumatologist. This is what he said….

“We will have to agree to disagree, there is no connection between RA and breast implants”. Yet again he managed to make me feel like absolute shit. Yet again deflated by his attitude, I decided to try and at least get one thing I wanted out of the meeting, if there was a chance to have another anti ccp test. Continuing with his royal bluntness, he hissed out that there wasn’t any point, but if I really felt it necessary and it would make me feel better, he would let me have one done after my operation and just before I came to see him in August. Just to make sure he got his point firmly across, he reiterated very slowly like I didn’t understand English, “The result won’t change” and then he laughed, “If it does I‘ll be writing you in the medical journal” My response, with a forced smile, “ Well people do defy medical science”.


Quite a few people have asked me if I am feeling smug. I’m not.  I am just incredibly relieved that I went with my gut instinct. I know I am not out of the woods by a long shot, but this amazing result had given me the kick up the backside I so needed to carry on detoxing. Who knows, by Christmas 2017, I may just be a normal healthy individual again with no label.

 

 

 

Nine Months Post Explant

Happy New Year!!

Well what a difference a year makes. This time last year I was feeling like utter pants and wondering when the fresh hell I was living with daily was going to end. This year I am going about my daily motherly duties mainly with ease. It isn’t something I take for granted, I can tell you!!

I still suffer with fatigue and I haven’t been sleeping particularly well of late. My wrists are my main concern as my left wrist has a lump on the side and also a very slight swelling that comes and goes. They can feel bruised and sore,  like I have strained them.. the pain is usually in the night time and first thing in the morning OR if I have been typing.. so I stopped typing (hence the absence of posts on here) to try and help them heal. I am still not sure if it is connected to arthritis, RA or if it is connected to the detox of the heavy metals and copper, as this is known to also cause pains in joint and muscles!!! Just wish I could have a definitive answer.. but only time will tell and I must be patient.

However, I can’t believe how quickly 9 months has gone. It’s not been an easy 9 months thats for sure. I have gone through the crash after explant, which was scary at the time as I had nothing to gage it against and there is nothing written down by a doctor to say.. “yes this is normal.. don’t panic”.  Two detox’s… one for the gut and one from copper. Neither of them an easy thing to undertake and definitely not for the faint hearted. You needed to have determination and stamina for these bad boys! In fact I have just started copper detox round two!! Hurrah *said with such sarcasm*

So just before Christmas, I had another Hair Mineral Analysis test done to find our how the copper elimination was going. Here are the results…

IMG_9875.jpg

The top line of numbers under the graph are the new results, the ones underneath are my original test results. I always use my nutritionist Catherine Jeans to go through the results as they are quite complicated to understand and she advises me on supplements and diet from there.

As you can see, it showed that I had lost a third of my copper, which was excellent news. Also my potassium and sodium had risen loads. This is what the lab says about these two…

SODIUM (Na)
Tissue sodium levels are frequently reflective of adrenal glandular activity. A further increase in tissue sodium to 46 mg% is indicative of a possible increase in adrenal gland activity. Contributing factors to arise in the sodium level can include; stress (physical or emotional), continued high sodium consumption, or toxic metal elimination (removal of toxic metals may produce a temporary rise in tissue sodium levels). Sodium intake (table salt) and high sodium foods should be restricted as much as possible at this time, especially if high blood pressure is noted.

POTASSIUM (K)
Potassium is necessary for carbohydrate metabolism, energy production, muscular contraction, and nerve conduction. An increase in the tissue potassium level may indicate an improvement in any tendencies that might be present toward potassium- deficiency conditions, such as; fatigue, poor digestion and hypoglycemia.

This was great news, as this showed that my adrenals function was finally kicking back in.

I had a lovely three week break from the detox over Christmas, where I indulged on a little more sweet items, like fruit and some dark chocolate. It was heavenly! I really pushed the boat out and broke the law when we went out for Christmas meals with friends and had a pudding!! Fully loaded with all the bad stuff…but I am still alive and not in agony, so all good.

Now back to reality and I have started the second phase of copper detox. It has been just over a week and I am already feeling the effects. After four days in,  the water works started and I sobbed like a loon.  This time though,  I didn’t hold it back, I just let it all out and felt loads better afterwards. I knew it was connected to my body detoxing, as this happened last time round, so it didn’t start getting all anxious about it.  I am also feeling quite wiped out with it and so I try and have a rest in the afternoon and let my body heal. But best of all and joy of joys, the acne has come back with a beautiful vengeance upon my forehead. So its another three months of avoiding high copper foods like, avocado, nuts and seeds, mushrooms and of course very minimal amount of sugar, including fruit. Then I re-test again and we take it from there. This isn’t a quick fix or process… but it is one that I am so glad to be doing. Much better than taking the medication and suppressing a symptom. This way, I will hopefully eradicate this issue instead and start to fully live my life again. Although, as I said.. compared to last year, this is wonderful.

There is one subject we haven’t discussed….. My BOOBS!!

Well roll back 9 months, they were quite saggy/deflated when the operation was first done. Like being pregnant, once you have the baby,  you are left with saggy skin – which no one warned me about and freaked me out when I had my first sprog! However, the skin soon shrinks back and it’s pretty much the same for the boobies.  My skin is now tightening back to normal and as I am now eating more again,  after the first detox, I have gained three pounds in weight. Having put on this little bit of weight means they are also starting,  very slowly,  to fill out a little.  I am a very small ‘A’ cup, so I am not expecting miracles on the size front, but a normal ‘A’ cup that fills a bikini top would be a dream come true. The scaring is now getting smaller.. I had very long scar lines after explant, as I just wanted the bloody implants out with the capsules. To be honest, I don’t plan to be parading around naked in public any time soon.. so it really doesn’t matter one bit to me.

As my rheumatology appointment has been moved three times and I am now not due to see them until November 2017 – originally it was February, moved to April – I have booked an appointment with my GP to have the lump on my wrist looked at and hopefully she will agree to a few blood tests, just so I can keep an eye on my levels. I am hoping to get an CRP, ESR (which are both inflammatory markers) and the dreaded anti-CCP count done again (specific the RA). Fingers crossed they all come back completely and utterly normal for a healthy human – within a negative range – and I can prove that this was all a horrible misdiagnosis and down to the plastic boobs all along.

Until then.. stay healthy and thank you for all your support. xxx

The Chemicals Uncovered & Toxicology

I honestly couldn’t believe my eyes when a lady from Australia posted on the support group a list of chemicals in her implants and wanted to know if anyone knew the heavy metal content in them. I asked her what implants she had and I was over the moon when she told me they were exactly the same as mine. NAGOR TEXTURED SILICONE. The universe heard my plea and I finally had the long awaited list of chemicals used to make up MY implants that had been inside me for 14 years.

Here is the list below and it makes for incredible reading…

14444886_10153706013475807_2411401492991358032_o.jpg

The chemical that stood out to me was Xylene. It was 56.5% of part of the implant shell. So it was the first one I googled.  I opened a document from the UK Government Health Protection Agency,  on general information on Xylene. My draw dropped to the floor.

(Taken from the Health Protection Agency Document)

  • Exposure by any route may be dangerous
  • Chemical classification: harmful
  • Inhalation causes irritation to the nose, throat and lungs
  • Ingestion causes irritation of the mouth and throat
  • Severe inhalation or ingestion exposure can cause dizziness, headache, confusion, heart problems, liver and kidney damage and coma.
  • Irritating to the skin and eyes

Dizziness, headache, confusion!!!!!!!  I had those exact symptoms on and off for 14 years.

I then had a look at the US health warnings on Xylene..

(Taken from the US National Library of Medicine Website)

Long-term exposure may lead to headaches, irritability, depression, insomnia, agitation, extreme tiredness, tremors, impaired concentration and short-term memory. This condition is sometimes generally referred to as “organic solvent syndrome.”

Extreme tiredness, short-term memory, irritability and depression!!!!  I completely tick those boxes also!!!!

I then looked up Perchlorethylene (PCE). It’s also known as Tetrachloroethylene, a chemical used for…. dry cleaning!

(Taken from the Public Health England Document online)

General toxicity – Tetrachloroethylene is irritating to the skin and mucous membranes and may cause systemic toxicity following inhalation or ingestion. The main target organ for tetrachloroethylene toxicity is the CNS [5]. CNS depression following exposure to tetrachloroethylene is characterised by dizziness, drowsiness, ataxia and dysarthria [11]. In severe cases, coma, respiratory depression and death may occur [1, 11].

Ingestion – Following ingestion of tetrachloroethylene, irritation of the mouth, throat, epigastric pain, nausea and vomiting may occur [11]. In the past, doses up to several grams of tetrachloroethylene were used to treat internal parasites. Nausea, vertigo, inebriation, dizziness, sleepiness and loss of consciousness were reported in patients receiving 4.2–6 g of tetrachloroethylene orally [1, 2]. Vertigo, agitation, hallucinations, drowsiness and subsequent coma were reported in a 6-year-old child who ingested 12–16 g of tetrachloroethylene [2].

 

Yet again.. dizziness, drowsiness, sleepiness,  vertigo and agitation were all symptoms I have presented in the past. I felt like I had just found the golden key that unlocks the box of answers. Even though this was all a shock, it was such a relief to know I wasn’t going mad.

Fortunately a few months back I had asked my explant surgeon, Dr Haywood, to refer me to the Toxicology Department at St. Thomas’s  Hospital, in London.  I wanted to see if they could help find out if I had any silicone left in my system after the gel bleed. The appointment can through and it wasn’t October. I knew other ladies from the UK support group had been into see this department previously and it had been an unsuccessful visit for them, in fact frustrating and quite upsetting.  Because of this, I wanted to make sure I was going in their armed with as much information and proof as possible. So receiving the list of chemicals that were used to make up my implants two weeks before my appointment couldn’t have been better timing.  I had even more evidence to go in there with.  In fact, I was so prepared I even sent the consultants an email with a few pieces of information before my consultation, just in case it helped them in any way. I included links to research on ASIA and Xylene that I had found a long the way. I told them that I was obviously not a doctor or medical specialist in any way but I have tried to do my own research in the hope of finding out what is wrong with me. I didn’t want to piss them off before I had even arrived.

Two weeks came around quickly and I was really anxious. My husband was in China and so I asked one of my oldest friends Dawn if she would come along and be my wingman. Since Dr X, I didn’t attend any consultations on my own, especially if they are men.

My appointment was at 2pm that afternoon and as we were shown into the consulting room, we were greeted by a young lady who introduced herself to us.  Dr Jr Toxicologist (Dr JT) apologised for not being who we expected and informed us that Dr T,  who we were meant to be seeing,  was stuck in an airport as his flight had been delayed and she would be stepping in for him. She continued that she would be taking lots of notes and then going over the meeting with Dr T later that afternoon. They would then put a plan of action together and I would know the outcome by the end of the day or the following day.

I was gutted, I had come prepared with a folder stacked full of information on my situation. All my test results from histopathology, my hair mineral analysis results, my doctors records for the last 14 years showing how many times I was in and out of the GPs office (hence why I needed a file!!), a medical report on an autopsy of a women who had 17 year old gel bleed from her implants by Dr Kappel proving that the silicone migrated around her body. Studies on siliconosis and ASIA/ Shoenfeld’s syndrome and not forgetting the list of chemicals.  I also had with me a pre failure analysis report letter from Professor P Blais, the worlds leading specialist in failure analysis of medical devices who is based in Canada,  stating that my left implant shell surface had seriously eroded,  that there had been substantial loss of the textured layer and the patch had debonded on the boundary with onset of cracking. So I would say, I was pretty well prepared, but not for his no-show.

We started the meeting going over my health issues and what had happened during the  past year and what had led up to this meeting. She interestingly said that it surprised her that I had been put on methotrexate after a diagnosis of just an anti CCP count as they can be false positives. This was music to my ears, she gained a gold star.  She then wanted to go over my medical history. This is where I gave her the low down on all the symptoms I had been dealing with over the past 14 years, the misdiagnosis, the different consultants who never really knew what was causing the problems.  We then discussed my families medical history, which was short, as I have a small family.  She then asked what I wanted to gain out of the meeting and it was at that moment the tears started to fall. I said that I just wanted to get answers, cross other potential reasons for being poorly off the list. Then if I did have to take an immune suppressant, I would do so knowing that I had done everything I possibly could. Dr JT totally understood, another gold star!

I then moved onto the chemicals listed in the implants. Dr JT wasn’t completely up to speed with this as she told me that she had only scanned the email. She also hadn’t seen my hair mineral analysis report.  I gave her the benefit of the doubt as she only knew she was seeing me at the last minute, so she could keep her gold stars.  I said that I would like to be tested for Xylene and PCE; as they were the chemicals in my implants that seem to marry up with my symptoms over the past 14 years.  Silicone; as it had slowly bled into my body for who knows how long and possibly causing an immune response in my body.  Copper;  as my hair mineral analysis report showed it was through the roof in my tissues, so to see what was going on in my blood would be also interesting. Platinum; as this is what they use to seal the implants with and may women with faulty breast implants have high levels in their systems. Heavy metals; as you can become quite toxic with them thanks to the implants.  I then showed her my report from Professor Blais stating that my implants has seriously eroded and the histopathology report stating I had silicone in my system.

After looking through it all, she said that she would definitely like to get my bloods tested for copper but would have to speak to Dr T regarding the Xylene, PCE and heavy metals testing. In regards to having a silicone blood test she said that there would not be any point in doing so and there is no levels to compare it with. Basically they wouldn’t know if I had too much or too little silicone in my system. She then continued that she thought that all the symptoms I had discussed with her earlier were all relatable……. to inflammation in the body. Migraines, fatigue are all relatable to RA. Dawn quickly added in that my hair had stopped falling out after explant, that I no longer felt dizzy,  I didn’t have my crazy headaches and my neck pain had completely cleared up . Her response was that she totally understood where we were coming from but  my body was probably in a state of inflammation for years, you can have all these symptoms but they don’t manifest into something bigger for quite some time.  UNBELIEVABLE!! I mean.. FFS!! Those symptoms of fatigue and headaches are  RELATABLE TO LOTS OF CONDITIONS. FACT.  Its this guessy diagnosis shit that really fucks me off. Instead of thinking, what an admirable lady to really see what is wrong with her before she takes a medication that costs the NHS a whole heap, lets see if there is something in what she is saying.

To add insult to injury she continued to ask me if I had any aftercare since the operation whilst circling the palm of her hands around her breast area. “what do you mean?”  I asked her. “Have you had any councelling to help you deal with losing your implants and your body image?” 

OH.

MY GOD.

I quickly responded that my ‘new’ body image was not an issue for me. My main concern in life was to get better, not how I looked. That ‘aftercare’ isn’t something that I needed. That my anxieties are all related to my current situation of not wanting to take a chemo drug that I may not need. What I should have said is.. how does this relate to taking some blood and urine to test me for chemicals?

It was wrapping up the consultation time. Dawn and I had been in there now for around an hour and a half and we seemed to be getting nowhere. Dr JT confirmed that she would be speaking with Dr T and getting back to me within 24 hours to let me know the outcome and that she was sorry  I didn’t get to see him personally. She then said….

“If you can, try and keep a positive mental attitude about it all, it helps more than you can possibly realise”. 

Now I agree with her there.. PMA is something I have practiced in my life for years, some people even say I am the most positive person they know, always finding a positive in everything. So I agreed with her and told her that she was completely right, it really does. She continued…

“A positive metal attitude can really help the situation and I hope you do not find me patronising saying so”

Hmmmm… it was her tone of voice that was starting to grate. It was…. patronising! But she didn’t stop there and she really should have…

“When you have a chronic disease a positive mental attitude can really help you deal with it mentally … I hope you don’t mind me saying that”. 

BOOM… all gold stars gone, in fact honey, you are in the minus for the gold stars now. YOU OWN ME GOLD STARS. Having someone who is at least 15 years younger than you, with less life experience, who has obviously NOT gone through ‘tougher times’, telling you to remain positive about a ‘chronic disease’ you don’t believe you have, is a massive NO NO in my book of life.  Also, lets just rewind this shall we, you have JUST NEGATED YOUR POSITIVE SPEECH BY ADDING IN A NEGATIVE!! See… so much to still learn bless her.

I left the consulting room with heavy heart, in a nut shell her prognosis were that all my symptoms were relatable to my chronic disease. Thanks Dr JT!! Great job *thumbs up* .   If Dawn hadn’t have been there I think I would have just sat in a loo cubical and blubbed for a while. But the fact Dawn agreed with me, (Dawn totally tells it like it is), was a relief. I just had to wait until tomorrow to find out my fate in the toxicology department and if they would run any tests on me.  I still had hope, all was not lost. PMT.

The next day I got a call from Dr JT. It was bad news. They were not going to test me for anything. Not even copper. Dr T didn’t see any point as there was nothing to analyse it against. I was fuming. How could I have turned up with a whole heap of evidence that I could potentially have toxic chemicals leaked inside me from faulty breast implants, presenting symptoms that match and not get a single blood test??!?!?!

I was then offered to have a phone consultation or a face to face with Dr T again if I so wished. Which I did. I said face to face, as phone calls are never the same. I also asked her if they knew of anywhere private that I could get the tests. She said she would go and sort out my appointment and find out if they knew of anywhere private and call me back in a short while.

I text Dawn and filled her in on the outcome. She was as pissed off as I was. Within 10 minutes she had sent me a text with a private clinic that provides blood tests for Xylene, Platinum, Heavy Metals and Copper. I couldn’t thank her enough.

Half an hour later Dr JT called back and said that I wouldn’t get seen until end of November!! It was now mid October. But I graciously accepted,  as I definitely wasn’t going to have a phone consultation. She then told me that they didn’t know of any private clinics that could do these tests. It was wonderful to corrected her and say that a friend had found somewhere for me to be tested in between our phone calls. She stumbled and replied that they where unaware of anywhere and ‘good for me’.  Wrapping up the conversation she said…. “Take care of yourself Abbie” in her special caring yet completely patronising tone and I knew at this point as my blood boiled and my face got redder,   I had to say something.

“Can I just say something before you go, I completely understand your comment about positive mental attitude, I have been a strong believer in this for years. But when you are telling someone to have a positive mental attitude and then continue the sentence with the words chronic disease, you plant a very dark seed and it is not positive at all. You should be careful what you say to people” 

It felt AMAZING… I had finally spoken up for myself. I was always worried it would affect the way they would help or deal with me, but I honestly am done with all this crap now and I am gonna let them bloody well know about it. So much so that I sent the following email that afternoon (with a little help from my lovely friend Lucy).

Dear Dr T,

It was disappointing that I did not get to see you in person yesterday though I did meet with your colleague, Dr JT .
The outcome of my appointment has changed since yesterday, as the offer to test me for copper has been retracted.  Therefore I would appreciate written confirmation of the overall outcome of the appointment, specifically clarifying the reasons why you will not test me for xylene, copper, silicone, heavy metals or platinum.  
 
This is to ensure I have understood the reasons behind your decision and that I am fully prepared for our meeting at the end of November.  
I look forward to your response.   
My response the next day was this from his secretary…
A further appointment has been made in the Clinical Toxicology Clinic for 26 October 2016 
Please let  me know if this is not convenient
Yours sincerely

 

Wow.. I was now going back to see him in less than two weeks!!  I replied to the email confirming the appointment and that I looked forward to receiving correspondence from Dr T regarding the outcome of my first appointment with Dr JT, so I am fully prepared for this consultation.  I am still awaiting a response.

I have made the decision though, to hold off any private blood tests until I see Dr T in two weeks,  just in case he has a change of heart.

 

To read my next instalment click here….. thanks for your support xx

The Histopathology Results Were In….

I was on my way to work when I got the call from my wonderful surgeon, Mr Haywood,  to give me the results of the Histopathology report. These results would show the analysis of my scar tissue for Anaplastic large cell lymphoma (ALCL) , a rare type of non-Hodgkin lymphoma, (which is a cancer involving the cells of the immune system), and also if any of the silicone had leaked out,  even though the implants were not ruptured.

“Good News!” he stated. “ You don’t have ALCL” .

I was over the moon regarding this news. He then went on to give me the microscopy results…

They found silicone debris in my scar tissue.

OH. MY. GOD.

Here is the report..

img_9375

I had what is known as Gel Bleed. Gel Bleed is where the smaller silicone molecules diffuse through the intact implant shell. However you ask where the silicone goes or how the body gets rid of it.. not one of the medical professionals I have asked have been able to answer that very simple question. No one actually knows.

From these results I had so many questions of my own.. What happens now? How can I get the silicone out of my body? Could this be the reason my body is so inflamed and developed an autoimmune issue?

Of course the first thing I did was sit down at my laptop and get googling. I wanted to find out as much as I could about silicone and what affect it might have in my body.

The first study I came across was by a rheumatologist Dr Frank Vassey. He studied over 2000 women with mainly silicone filled breast implants. He noted from his perspective that “The immune system activation from silicone/silica causes a unique fibromyalgia syndrome.” (  The New York Journal of Style and Medicine )

The symptoms I had completely matched up with that of fibromyalgia, even more so than my diagnosis of rheumatoid arthritis and in fact many women on the support group also have been diagnosed with fibromyalgia!

He continues in this article…

“Usually local problems under the muscle occur first. The breast hardens and feels like a grapefruit or even a baseball (capsule formation). That is your macrophages in action. The immune system is responsible for wound healing and making scar tissue. The pain spreads into the muscles in the anterior chest, upper back and neck. Exercise tends to spread the silicone/silica debris making you feel worse. On the other hand, exercise makes psychologically-driven fibromyalgia better. “

Well, as we all know from my back story.. I also tick all the boxes for this.  In my report letter (above),  the histopathologist even states that there were focal foamy macrophages around the silicone debris in my scar tissue. If you are unsure what exactly macrophages do in our body, they are the cells of the immune system that circulate throughout the body and play a key role in an immune reaction. The good news is that Dr Vassey noted that the syndrome tends to stabilize and improve when you remove and do not replace the implants.  He believes the systemic illness is a function of the degree of excitability of the woman’s immune system to silicone/silica (implants are about 20% silica) coupled with the amount of the material exposed to the immune system.

He wasn’t the only expert to think along these lines…

In 2016 Dr Kappel,  a plastic and reconstructive surgeon from the Netherlands, LL Boer and H Dijkman from Department of Pathology, Radboud University Nijmegen Medical Centre, in the Netherlands, studied a patient who died in 2008 at the age of 56 and had been exposed to gel bleed from her silicone breast implants for 17 years. She had complained numerous times to her GP from 1995 – 2004 before her death about many different symptoms, from painful breasts, a burning sensation of the breasts, lymph packages in the left armpit, severe memory function disorder, walking function disorder, sleeping disturbances, complaints about bowel function and skin disorders. She described an overall feeling of chronic illness and complained of sudden numbness of the legs.

This is what they found at her autopsy…

We found 2 types of silicone material in multiple tissue and brain samples of this patient. The first is a droplet-like form. EDX measurements demonstrated that the droplets are composed of elemental Si. The second is a plaque-like form; these structures are comprised of elemental Si and Ti (Titanium). Occasionally we found that these plaques were located inside the tissue without a lining and sometimes they were located inside the lumen of blood vessels. The use of EDX analysis over light microscopic examination only, is now a contributing factor for the establishment of silicone bleeding and migration throughout the whole body in high amounts.  ( Clinical Medical Review and Case Reports

Okay, so I can hear the doubters..this is just one women out of thousands that have breast implants. But what an amazing women she was to donate her body to medical science to prove that her implants were making her ill.  And lets not forget, this is full proof evidence that shows silicone has the ability to travel around the body, that it doesn’t just stay in the scar tissue.

 

Dr Sarah Myhill a UK Doctor also states on her website that..

” It is well recognised that the silicone bleeds out of the implants very readily and is widely distributed throughout the body by the reticulo-endothelial system.”  (reticuloendothelial system a network of cells and tissues found throughout the body, especially in the blood, general connective tissue, spleen, liver, lungs, bone marrow, and lymph nodes.)

She continues

Silicone is tough molecule which cannot be broken down by any biological enzyme system. It is a plastic – plastic bags do not even rot down in a compost heap! However, in some patients the immune system tries to break down the silicone. This causes inflammation wherever the silicone ends up. Because the largest part of our body is made up of muscle, connective tissue and skin, I commonly see symptoms here.

However, the long term effects are far more malign. This stems from the fact that silicone cannot be broken down by any enzyme system in the body, is engulfed by macrophages, carried to distant sites by embolisation and there it acts as an immune adjuvant, stimulating immune activity. This means that these patients may suffer from multisystem disease.

Therefore, we see disregulation of the immune system with:

  1. Autoimmunity, eg mixed connective tissue disease,demyelinating conditions such as MS, autoimmune endocrinopathies, vasculitis and myopathies;
  2. Chronic fatigue syndromes;
  3. Disregulation of the immune system leading to multiple allergies which may be to foods, to chemicals, to inhalants, or to micro organisms.

(Taken from Dr Sarah Myhills Website)

The Arthritis Trust of America (ATA) also published a report of Silicone Arthritis and Related Diseases back in 1994. Even back then they noted at the beginning of their article how women had been questioning their earlier decision to implant after suffering major disabilities as a result. When this article was first published,  the FDA had placed restrictions on the use of silicone breast implants, which at the time was the nations largest class-action law suit for  $4.7 billion as the result of implant damage to women. The report covers what they class as “slow leakage” or “bleeding” of the silicone gel from the implants, which over 20 years later, we now call ‘gel bleed’. This is what the authors had to say about what happens to the silicone….

There is slow leakage (“bleeding”) of the silicone gel from the implants through the semi-permeable membrane envelope and also into and through the capsule that surrounds the implants. This is picked up by the macrophages (scavenger cells) of our immune system and is broken down inside these cells which travel all over the body. The gel breaks down into Silica (SiO2)  and Silicon (Si) which causes an immune system dysregulation. Thus there are antibodies produced against the silicon and also against the silicon and protein complex (organ systems) so that one suffers from an auto-immune illness.

it continues…

 

There is also damage that is not related to the immune system because the silicone gel causes oxidants (damaging molecules) to be produced that directly damage our cell walls, DNA, and enzyme systems. All of this adds up to slowly developing chronic debilitating illness affecting every organ system of the body.

and there was more about the symptoms…

According to Stephen Edelson, M.D.2, Immune Disorder Symp- toms, sometimes occurring within months of implant, but often occurring 15 to 20 years after surgical implant, include the following: Peripheral Neuropathy (weakness, tingling, numbness, etc.), Central neurotoxic Neuropathy (cognitive difficulties, memory problems, hyperactivity, attention deficits), Cervical and axillary enlarged or painful lymph nodes, fatigue, malaise, weight gain/weight loss, joint and tendon pain, hair loss, dry eyes & mouth, flu-like symptoms, burning skin, constipation, dizziness, enlarged lymph nodes, depres- sion, thyroid problems, hair loss, night sweats, fibromyalgia (multiple tender areas), Myositis (painful inflamed muscles), abdominal pain, emotional instability, chemical sensitivity, food sensitivity, and Pul- monary Hypersensitivity (shortness of breath).

It is believed that these are only the most observable symptoms. Some patients are only moderately ill, while others suffer damage to more than one organ of the body.

Some people who have Silicone Implant illnesses have been diagnosed by their physicians with Lupus, Raynaud’s Sjogren’s, Rheumatoid Arthritis, Chronic Fatigue Syndrome and Multiple Scle- rosis. (ATA – Silicone Arthritis and Related Diseases)

 

So yet another report that not only states that the macrophages can carry the silicone to other parts of the body, but seems to hit the nail on the head 22 years on with the symptoms.  So what now… If your body can’t break down the silicone and get rid of it naturally, how do you get the silicone out of your body?

Unfortunately there isn’t any science based studies on the subject of detoxing silicone that I have found. Why? Because silicone implants are not seen as a problem within the medical world. According to the experts.. silicone is inert. I beg to differ.

Dr Edelson,  who was one of the authors of the ATA report mentioned above, noted down a possible way of healing. A form of therapy from silicone gel bleed and to help the body recover. He states..

During the course of therapy, many different, often unique, approaches are recommended, usually of one or another form of antioxidant therapy, coupled with proper diet, exercise, and other treatments. 

Also on the Healing Breast Implant Illness website is a whole page dedicated to detoxification of breast implant toxicity. This was put together by Nicole Daruda, a lady who has also gone down her own journey of recovering from breast implants and the illnesses it caused her. If it wasn’t for her dedication and beliefs that knowledge is power and she hadn’t collated all the incredible information she has found during her own personal journey  by putting it into a fantastic website to inform other women, a lot of us would still be in the dark. Her immense knowledge and understanding of  what is needed to heal from these toxic bags has been invaluable to me and many others alike.  Thanks to Nicole’s website, I also found out about the chemical and heavy metal poisoning that implants add to the toxic load within our bodies.

Implants are made up of numerous chemicals. No one can get the lists of exactly what is in a breast implant, because the manufactures won’t give us the information. I’ve emailed them and asked, as have many other women.. and the response I got on email from NAGOR was this…

Please see the information regarding our Implants below:
 
 
The Barrier Layer: All Nagor Implants are manufactured with high performance silicone elastomer layers to enhance shell integrity and have a unique 360o degree barrier layer to minimise gel diffusion. Texturing: Nagotex® is the unique silicone shell surface designed to encourage tissue adherence to promote a clean interface for a more secure fit.
 
The Fill: Cohesive silicone gel.

Soooo informative !!

What we do know is that to seal an implant during the manufacturing process, they are are dipped in platinum,  as noted by the FDA (The U.S Food and Drug Administration) website…

Platinum is a metal used as a catalyst in the manufacture of the shell and gel components of silicone breast implants. Because small amounts of platinum remain in the product following manufacturing, concerns have been raised that platinum may enter the body, either by diffusing through the intact shell or through an implant rupture, and cause adverse effects. ( FDA Backgrounder on Platinum in Silicone Breast Implants)

There have been numerous studies on this topic over the years showing that there have indeed been high levels of platinum seeping through implants,  however the conclusion by the FDA is as follows…

Some studies have shown that small quantities of platinum may bleed through an intact implant shell and be present in trace amounts (parts per billion) in surrounding tissue. However, these results need to be confirmed using a larger number of subjects. Other studies have serious scientific flaws that raise concerns about the validity of their results and conclusions. Even if the analytical results of large, well controlled studies were to show relatively high levels of platinum in biological samples, the toxicological significance would still need to be determined.

Based on the existing literature, FDA believes that the platinum contained in breast implants is in the zero oxidation state, which would pose the lowest risk, and thus that the small amounts of platinum that leak through the shell do not represent a significant risk to women with silicone breast implants. FDA will continue to review and analyze the literature on the issue of platinum in breast implants, as part of its ongoing assessment of the safety of these devices. (FDA Backgrounder on Platinum in Silicone Breast Implants)

This however was not the case for Barbara Stanistreet, author of The Boobie Trap.  Her book takes you through her personal 30 year journey battling with her debilitating health issues since silicone breast implants were placed into her body after a double mastectomy. She went through three sets of implants, the first set rupturing, the second set being PIP and the third set being banned by the USA because of serious safety concerns. One of the many doctors Barbara encountered on her desperate road to health was a Dr Harbut and he  believed that she was showing symptoms similar to the profile of an individual being exposed to platinum salts. Barbara had tests done on her last set of implants by a laboratory in Tennessee and they confirmed the presence of platinum in both the shells and the gels but in far greater amounts than is permissible for occupational exposure! No wonder she was so ill.

So not only did I have to work out how to get rid of the possibly free roaming silicone in my body, I also needed to find out if I had any heavy metals and/or possible platinum in my body and try and get that out too.

Cue major detox.

Click here to find out what happened next….

After The Storm

My two weeks were up. It was time to start taking the chemo drug again. I can’t stress enough at this point how much I didn’t want to go back there.  I was still feeling pretty rotten with the lurgy, which was now starting its third week of residency inside my body.  So in hope that pity may be thrust upon my sick self once again, I decided to put in yet another call to the rheumatology clinic to get more advice. It wasn’t until that afternoon that a specialist nurse called me back . I explained how poorly I still felt with the virus, how going back on methotrexate (MXT) filled me with dread and how sick the drug made me feel before. Looking at my notes, she discovered that I had never been to visit the rheumatology clinic to meet with a nurse to discuss my situation since I was transferred to the NHS and was even more concerned that I had been on MXT without any guidance or support at all. Yet again, I couldn’t hold back the tears and cried a lot down the phone to her.  She listened to why I didn’t think my symptoms matched to RA, but she sympathetically told me that everyones symptoms vary and I did have a high Anti CCP count.  She then recommended that I started back on MXT because it’s much better to “Catch the disease early and get you into remission”. She recommended that I start using  the injectable version instead of the tablets, as administering the drug this way didn’t make you feel as sick. This wasn’t the advice I was looking for. I bloody hated needles at the best of times and the thought of injecting myself filled me with complete horror.  I had visions on me trying to inject myself whilst looking away, I mean.. how was that going to work. Fortunately, to get me onto the metoject pens, you have to have a lesson in stabbing yourself in your leg and they couldn’t fit me in until after my operation. Cue sly smile at the end of the phone.  However, the smile was soon wiped off my face as she finished the conversation by telling me to continued taking the dreaded tablets for the next two weeks up until my operation.  I got off the phone and burst into tears. What got me the most, was the confusion of what was best for me.  My gut was screaming “DON’T TAKE THE PILLS YOU CRAZY WOMAN, THEY ARE BAD FOR YOU, THIS IS ALL WRONG, YOU DON’T HAVE R.A!”. Yet the voice of doom (Dr X) in my head would be saying “The disease will take over your body and you will never be able to turn the clock back”.  Then the voice of reason would pop up to add its 10 pence worth, “But if you listen to the nurse and take the drugs then you will have no idea how you feel in the run up to your operation. If the implants are the issue, how will you ever know?”

I didn’t have  much time to untangle the mess in my head and work out exactly what I was going to do, as I needed to pick up my youngest. The timing of this emotional breakdown couldn’t have been any worse.  It was that time of day when I had to go and stand in a playground of parents and make polite conversation.  No make up in the world was going to hide my puff ball eyes, Rudolf nose, and red blotchy face. But to be honest,  I was too mentally and emotionally exhausted to care.  So I put on my sunnies, took a deep breath and got on with the school run.

That evening, it was time for me to take the pills.  I sat with them in front of me at the dinner table, still not 100% sure what I should do. So I did a little reasons to take them and reasons not to take them list.

Not to take them..

  1. I was still feeling pretty rotten from the virus and I had to be in tip top health for my operation in two weeks.
  2. Surely two more weeks wouldn’t make a difference.
  3. Holding off would mean that I would really know the benefits of the explant.
  4. I wouldn’t feel sick or super tired
  5. I wouldn’t feel like acid was burning through the lining of my gut after taking them
  6. Surely two more weeks wouldn’t make a difference

To take them..

  1. control the disease you don’t think you have
  2. its the advice of the professionals

 

I picked up the tablets and chucked them in the bin. ‘Not to take them’,  won by a majority and boy did I feel like it was the right decision.

However, it wasn’t an easy couple of weeks. I was so aware of every little ache and pain in my body, I was on a constant look out for a ‘sign’ the disease was taking over my body, that I found myself constantly worried I had made the wrong decision.  To add to it all, my youngest pumpkin got another bladder infection. She was in desperate pain and had to have a few days off school while she recovered. That was then promptly followed by slapped cheek syndrome aka Parvovirus B19. This gave her a temperature, earache, her nose started to run again, she also complained of a headache, light sensitivity too and to top it all off,  she was up all night. Poor little monkey had been poorly, on and off, for weeks now. Luckily for me, according to my new best mate Dr Google, if an adult gets Parvovirus B19, amongst other symptoms they can get joint pain. So,  yet again, there was  something else that I could put my current little niggles down to.

A few days later it was Easter Monday and I started to feel really unwell again with flu like symptoms. To add to it, I was also sleep deprived thanks to looking after my youngest all week and still hacking up the glowing green stuff from my month long barking cough. This was now giving me a weird dull back ache and because I felt so bruised from the inside out, my lungs hurt every time I breathed in. Concern was creeping in, I had exactly one week until my operation and I could barely move from my sick bed.  I needed this to be vacating my body immediately,  as there was no way I was going to postpone the day I had been waiting for all these months.  Only one thing for it, to call the out of hours Doctor. My appointment was booked for 12.45.

Thank god for an automatic car, that can pretty much drive itself and a 12 year old who was my wing man.  I am still unsure how I managed to get out of bed, into a car and drive 25 minutes to the emergency surgery feeling the way I did. But we arrived there safely and ended up sitting in an over crowded waiting room for an hour and a half. We eventually got called into see the Doctor, who was a really nice man. He listened to my chest, said it was rattling and pointed out a rash that was making an appearance.

Dignosis – Virus and Chest infection.

He gave me a course of antibiotics on the spot and told me to start taking them immediately, so I would have a fighting chance of making my operation the following week.  

I went home, did as I was told and collapsed into bed.

The next morning I started to feel human again. The aches had gone and I had managed to get a decent night sleep.  My husband was back from working away and we decided it would be nice to treat ourselves to a full english breakfast at the local farm shop café, as the cupboards were bare.   After filling our bellies,  we took the dog for a lovely stroll around the woods. Storm Katie had finally blown away and the sun was streaming through the trees. Everything seemed so normal and perfect. For the first time, in a long time, life felt great and I certainly wasn’t taking it for granted. Not one bit.

It was only a few days now until my explant and hopefully this nightmare would be over for good.

Click here to read what happened next… xx

Immunity Has Left The Building

The whole point of taking methotrexate is to stop your immune system attacking itself, thus not having any flare ups (joint pains) the disease taking hold and in a nut shell your life being shortened. However what do you do when you get a nasty virus that gives you flu like symptoms and a high temperature?

Well, I didn’t know that answer either. No one had told me about these issues when I started on the drug and I was really unsure who to ask.

When I first got my symptoms back in the beginning, I had absolutely no idea it was going to be RA. So we used our private health insurance to find out what was going on. When I finally got the diganosis, I was coming to the end of my Bupa funds limit. This was thanks to the numerous blood tests that where about £250 a time and when the insurance money runs dry, it was leaving it down to me to pay for any other blood tests I needed, which would be every few weeks.  So it was definitely time to get refered back to the NHS. Unfortunately for me it was with the same consultant. Oh great!

However, upon my first visit to the NHS to see Dr X, I never got any direction as to who I spoke to if I needed advice. I never got told when I should have my bloods taken as I needed to keep a close eye on my liver function. I never even got a prescription to keep the medication going. That is probably because the time spent in the appointment was all about anti cpp tests and trying to understand what and why this was all happening.

So when I got home, I was the one to set up my blood tests at the GPs and an appointment with my Doctor, so I could run everything through her.

In the meantime and while I waited to see the GP,  I came down with this nasty virus. It completely wiped me out. I have honestly never felt so rotten in my life. It wasn’t flu, as I have had that bad boy before,  but it sure did feel on par with it. As I lay in my sick bed, barely able to move, my  worried husband called the rheumatology department at the hospital to see who we should be speaking to (as we were still unsure ) and what other medication I could possibly take to ease the symptoms. The hospital put him through to Dr X ‘s secretary to which I grunted from my sick pit to ‘hang up, you’ll get nowhere speaking to her or him’.  Doing as he was told, he ended the call and decided to try the GPs for their advice instead. My usual GP called me back and said that I should only take paracetamol as I was not allowed to take nurophen, an anti inflammatory,  with methotrexate (mtx). So all weekend I popped paracetamols in desperation, but it didn’t move me far from my horizontal state in my darkened bedroom.

Monday came round, which was the day to take the mxt and I felt so rotten that the thought of taking the medication filled me with dread. My poor battered body was in no fit state to be compromised anymore, especially with this virus taking hold and coughing 24/7. Also, the thought of popping those six little pills that made me feel so sick was not my idea of helping me get better.  So, I decided to attempt to get connected to a rheumatology nurse and see if I could get some advice as what was best to do. I managed to get passed the receptionist this time without being transferred through to Dr X’s secretary. This was a breakthrough. But I was put through to their answerphone message which stated that they would get back within 48 hours. I left my message, but didn’t hold out much hope that I would get my answer that day.  I was at an all time low at this point. I felt so alone and scared. I was taking this medication that was suppressing my immune system and felt so ill from this virus. I just wanted someone to help me. Tell me it was all going to be okay. I cried. A lot.

It was about 5pm when the phone rang, I certainly wasn’t expecting it to be the hospital. The RA nurse was so lovely and understanding. She completely took on board how I was feeling and said that I was to miss the mxt for the coming week and if I still felt rotten the week after, not to take it then either.

It was music to my ears, I felt so relieved, I could have jumped down the phone and kissed her. This would be my first week off the meds since before Christmas.  I was nervous about it all but also incredibly excited. I would hopefully start to heal from the virus and I would see if my body would be okay without the drugs.

It had only been two days off the meds and I was feeling utterly amazing. I didn’t feel so spaced out or unmotivated. I had more energy and even better for the first time in months,  I didn’t feel sick!!!!!  Even though I still ached from head to toe thanks to the lurgy, was  coughing my lungs up and generally wanted to be lying down in bed,  I honestly could feel the difference in my body and mind not being on mxt. So, I continued maintaining positivity that I would be okay and not ever have to go back on the bloody stuff.

That Wednesday, it was time for yet another needle in my arm. Even though I hadn’t taken the mxt that week, I still needed to check my liver and kidneys. I had booked to see my favourite phlebotomist Ms C,  as she is so gently putting the needle in, you hardly ever feel it. She is the perfect type of Phlebotomist for me,  as I have never been a fan of blood tests since the time I got showered with my own blood spurting from my arm when I gave blood at the tender age of 18. It was honestly like a scene from a horror movie.  I was  wearing a white blouse that day and once the whole highly disturbing saga was over, I left the blood donor hall looking like I was the one who had just commited a murder. So, as you can imagine, after that little episode, I have always been highly weary of having any type of blood tests and with the amount of blood tests required with RA and the medication they put you on, I had to toughen up. But having had wonderful Ms C made me forget the past until I got booked in with someone else when she was off work. It started off under false pretenses as I was greeted by a really lovely jolly lady. I thought, this is good, she seems really lovely. Miss Jolly Phlebotomist sat me down by her desk and got me to stick my arm out. “ oooh you have lovely veins” she said, which is a comment my veins and I are use to. She got the needle and bottles ready and was chatting away to me about knitting. I turned my head the other way, as I have done since blood donorgate all those years ago and that’s when the horror happened. This is no exaggeration but she pretty much stabbed me in the arm. If the needle hadn’t been hanging out of my arm, I honestly would have hit the roof .  Then to make things even worse, I could hear this bubbling gurgling sound.. oh my actual Christ it was the blood filling up in the vile. Completely unaware of the unbelievable trauma she had caused me in the space of a few seconds, she happily jibber jabbered away about god knows what, while I had started to sing at the top of my voice to muffle the sound of the blood leaving my incredibly sore arm.  I vowed to my arm that I would never put us through that again and so I upon leaving I went to the reception and promptly made sure I was booked in with the wonderful Ms C for the rest of my life.

Back to the Wednesday with Ms C and I was discussing with her what blood tests I should be having done whilst on MXT as I didn’t understand how they would marker it. She said that they do a CRP test now to monitor the inflammation levels.  So when I got home I checked to see what my inflammation markers had come back with on my private blood test results. The CRP test is usually between 1-10 to be normal. Mine came in at 8 in September and 7 in October! Completely normal. My RF factor wasn’t even on my blood tests results and so the only thing that was high was my anti ccp count. I was so confused as to how this all worked, how would they be able to tell if the disease was under control? I started to feel frantic again, this was my health and my future and to have peace of mind during all this,  is to have complete understanding about it all.

Fortunately, I had my appointment with my GP the very next day. I ran all my concerns past her and showed her my private blood results. She agreed. She also said that she thought my diagnosis was a bit quick and had sent a letter back to the consultant stating this. She was wonderful and could see the concern and stress I was under and agreed to do another anti ccp test. She made sure I was aware that it could still come back the same, but it would be good to just make sure, I knew that. I also asked to be referred to a new consultant once we knew the test results. Before I left she also said that after my explant operation, we must make sure we do another anti ccp test. This was wonderful to hear, she wasn’t saying that she agreed with BII. But she wasn’t ruling it out either.  I can’t tell you how happy I was leaving the doctors that day. Someone had finally listened to me and I felt I was going to get the answers I had been longing for all these months.

I had a really busy week. Typical. Just when I needed to relax and do nothing to keep my body happy and stress free. Friday night we were out till late watching our eldest perform in her school cabaret production. She was absolutely brilliant and I was so ridiculously proud of her.  Then, Saturday night, I had my friend Arun’s leaving do. He works at a hospital as a chest specialist, (this will make him laugh as this is not the correct title for his job but I can’t remember!) and we had been talking about my situation when he asked if I would like to speak to his friend. He was one of the top consultants at the hospital he worked at. It was a completely different hospital to the one I was attending. I jumped at the idea. This is exactly what I had been wanting. Just to speak to another consultant and get his opinion on my situation. The universe had heard me. I was so grateful to Arun and of course the universe.

The virus was still not shifting and the following Monday I was feeling rough again, the aches and general feeling shitty was back with a vengeance. I also felt bruised from the inside out from the constant coughing. I continued to just take paracetamol and only got on with a few essential house chores, like clean clothes for the kids for school, as my hubs was working away.  I started to feel niggles in my body and I was worried it was my joints flaring up. It is at these moments I have real low points. I get panicked that I am naive about the situation and that I have been barking up the wrong tree. That I really do have RA. It was another unhappy time for me, in fact I cried a lot. I was so confused at times, if I had RA then I should take the medication to help me so the disease didn’t get a grip,  but the medication made me feel so rotten. My left hand index finger was ever so slightly swollen on the top joint. I mean you really needed to look to see it but I could feel it, I knew it was there. But then the pain would go after a few hours and then it would migrate to somewhere else and again it really was ever so slight. But the fact I knew it was there was enough to send me into a deadly panic.  I decided to message the lovely Arun and see if he would send his rheumatologist friend a message. He got back to me within the hour. Dr M Was more than happy to speak to me and had given me his mobile number to call between 1-2pm. This was just amazing.  At 1pm I spoke to him. He was such a kind and understanding man. Not dismissive in the slightest. So here are the things I found out.

YOU CAN HAVE A FALSE POSITIVE TEST

Your Anti CCP levels never really change

Its good to get an early diagnosis to get the disease under control

You would be on Methotrexate for 2-3 years and then you would be in remission once off the drugs and have no flare ups.

I shouldn’t take the MXT two weeks before the operation and two weeks after to let my body heal.

Being off Mxt for a few weeks wont harm me as I don’t have severe RA

Stay off Mxt until virus has gone away.

The joint niggles would far more likely be the virus than RA.. Mxt stays in your system for a month after stopping.

I won’t lie, I came off the phone so grateful for speaking to him but I cried my eyes out yet again. I started to believe that it actually couldn’t  be anything else other than RA and that I would just have to start taking the drug again once I was better.

The following day,  I had the re test for my Anti CCP. I wasn’t feeling too good still but I was so determined to get it done. I would get the results by Friday and know for sure what the deal was. It was going to be a long three day wait.

I tried everything to remain positive after the blood test. I would say a mantra to the universe that I was happy and grateful for my health, happiness, an Anti CCP count of 5 and a negative RF factor. Even though the results played heavy on my mind, I have to admit I was the happiest I have been in months. I had energy and I felt great, even though I was hacking my lungs up with this virus.  I even had the motivation to make chocolate sugar free brownies with my youngest after school, which I hadn’t had the energy to do for months. I felt like my old self.

The day before I was due to get the results, I thought I would just call up the doctors to see if they were in. You had to wait until 14.30 to do this, so by 13.00 I was clock watching. I had been telling people over the last few days how I was going to be opening champas on friday to celebrate my new found freedom of health, in an attempt to keep the positivity flowing. Friends were also commenting on how healthy I was looking and I knew that was because I hadn’t taken the methotrexate for a few weeks and my body was sighing with relief that it didn’t have this army of suppressants running wild in its system. It felt good and I felt free.  14.30 arrived. I picked up the phone and called the doctors. I was on hold for the results line. It was now 14.40 and I was still on hold, but I wasn’t going to hang up, I needed to know. The 10 long slow minutes I was on hold, I kept muttering that I was so happy and grateful for a negative result and an anti ccp level of 5 over and over until it started to ring down the other end of the phone and the receptionist finally answered…

First I had to find out if the blood results were even in yet. They were and she started to read them out to me..

Rheumatoid Factor. Negative.  

This was the perfect start….

Anti CCP Count. Raised.

“to what?” I asked.

She paused and said “hold on I am not sure how to tell you that.”

” It’s a number” I said

“Oh, erm…. two hundred and fourty four, is that what you are looking for?” she said bubbly.

I could barely reply my thanks back. My whole entire bubble of hope had popped. I was devastated.   I cried big loud sobbing, could hardly breath,  tears. I sobbed down the phone to my Husband and then to my mum. I then cried some more and 5 minutes later I dried my eyes, put some sunglasses on and did the school run with my bright red cry nose and cry rash face.  I felt pretty crap for the rest of the day. My whole plan of feeling great and celebrating a misdiagnosis went right out of the window. I mean I have been misdiagnosed on may occasions for many years and the one time I bloody well want to be misdiagnosed is now.. do you hear me universe , its NOW!

So I had three more days of clear head and energy before the dreaded methotrexate would be consumed again,  take over my body and I would turn into a retching zombie. So I decided to enjoy it and stop wallowing in self pitty.

You see, the fat lady hadn’t quite sung yet. I still had the chance that this was all down to my killer tits. The toxic bags could well and truly be the root of all this evil and autoimmune nonsense.

Three Weeks until I explant.

 

Click here to read what happened next … xx

The Beginning

 

AUGUST 2015

It was summer, the kids were off school and the Norfolk countryside was calling us to cycle its beautiful lanes. It was also the day that I got the first pains. It wasn’t in the easiest of places either, my right bum cheek. It felt very similar to sciatica, which I had the joy of experiencing during pregnancy.  It was incredibly painful and made walking impossible.  But I was hoping that the bike ride may sort it out and un-trap it. How wrong was I.  It got worse the further we got and I had to push through the pain around the country lanes, as I didn‘t want to let the kids or the dog down, who was also hindering my cycling even more. Maybe this should have been my first lesson in listening to my body and the noises it makes when it needs rest. But as usual super mum had to continue and the very next morning I was in agony. I went to my GP (yet again, I was a serial appointment maker) and he looked me over.

Prognosis… probably sciatica – take a few anti-inflammatory painkillers (nurophen) and it should go away in a week or so.

The following week my right hand started to hurt. But I had been learning lines for a play I was in,  by writing them out over and over and over again with a pencil for hours on end. Again, like the sciatica situation a week previously, it felt like a trapped nerve, but this time in my wrist. I put it down to RSI (repetitive strain injury), took some more painkillers and muddled on. The pain eased but was still niggling away in the background and I had a special day in my diary, my best friend from school and her family were coming over for lunch.  The house was full and I was being the dutiful hostess, keeping everyone fed and happy. It was so wonderful to spend time with them all as it had been at least 10 years and I certainly wasn’t going to cancel because my wrist was hurting. But as the day went on, it was really starting to become an issue. The painkillers weren’t touching the sides and by the time they left, the pain had spread up my arm and it felt broken. Tears just fell down my face, I was in so much pain and nothing I did helped to get me comfortable. I had to call the GP… again!

Prognosis… possible RSI – take some more anti-inflammatory painkillers.

A week later I was back in the GP’s again, the pain had now started again in my right wrist and also in my left. This time I hadn’t been writing for hours with a pencil or cycling like a loon with a dog on a lead (FYI – that’s really hard and may I also add slightly dangerous for a dog and its owner) but I had been driving for hours across the country for three hours.  It was my beloved and cherished Grandmothers funeral in Oxford. I did all this, read my heartfelt and emotional eulogy that nearly broke me and then after the wake, I drove all the ways home, for another 3 hours,  back to Norfolk. All in a day.

Prognosis.. Not sure, lets do a blood test.

You know its not good when a Doctor calls you a day after your blood test to speak to you. My bloods had shown up a low white blood count. I had possible neutropenia and they wanted to do another test in two weeks.

I didn’t make two weeks.  Yet another ‘flare up’ and this time it was so bad it felt like I had two broken arms. I couldn’t open the plastic lid off the butter, or turn the dial on the shower. My eldest daughter who was 12 years old at the time, had to help dress me, as the pain was too much to pull anything on. To this day I still have no idea how I drove both my kids to school, but on the way home, I pulled into the GP’s and asked to see an emergency Doctor. I saw a lovely new registrar, he looked into my files and once he saw my blood results, he asked me to wait for a moment in the room while he went to have a chat with the Doctor overseeing everything. About 10 minutes later, both of them returned to the room. I had two Doctors looking me over with concerned faces. Happy Days.

Prognosis.. You might have leukemia, lets get you seen a.s.a.p. by a specialist consultant.

WHAT.

THE.

ACTUAL.

FUCK.

Luckily, as I have been a walking advert for perfect health the past 14 years (I am being ironic), my husband and I had decided that a little bit of private health care wouldn’t go amiss. So my appointment with a consultant came through really quickly and I had an appointment within a week  to see Dr X.  It was a long week before the day arrived, yet I maintained positivity that I was going to be okay.   First impressions Dr X  was a lovely fellow and he asked me many questions.  I informed him I had felt a little achy and under the weather, that I felt tired, but I had been over doing it and had been having some pains in hands, feet, knees and rib cage. He sent me off down the corridor to the phlebotomists room to have 8 viles of blood removed from my arm (I HATE NEEDLES, this was not a joyous moment in my life) that would check me for parvo virus, Lyme disease, ASOT, DNA B, anti nuclear factor, rheumatoid factor and Anti CCP, oh and my thyroid function, pretty much everything under the sun. He then shoved a steroid injection into my sweet derrière  and sent me on my way.  The results would be back in a few weeks.

Prognosis… possibly Viral Arthritis, definitely NOT Leukemia.

Thank f@@k for that.

A few weeks later I am back in the hands of Dr X. Feeling better as the steroids had taken every little bit of pain I had away. No backache, no neck ache, no joint aches. I was feeling bloody marvelous and slightly super human. All hail the steroid.

He asks how I had been. GREAT.. I replied. I was currently lead in a play and was more concerned that I wouldn’t be able to perform if it came back again. I didn’t want to let the cast and director down as we had been rehearsing for a good month or so and opening night was looming. Dr X was fully aware of this predicament and happily gave me three weeks of steroids to take whilst we got the play out of the way. He had all the blood results back and nothing had shown up, except for one. My Anti-CCP count was high. I had no idea what this test was for. He said it was a concern as it was accurate for rheumatoid arthritis, but reassured me that it still could be viral. In my happy-go lucky and high on steroids way, I just shrugged off this test, not even enquiring a) what is an Anti-CCP test or b) why would it be a concern. As far as I was concerned it was a need to know basis and I didn’t need to know, as all I had was a little virus AND, I felt great!!

Unfortunately a few weeks later when the steroid in my butt wore off , my super human powers disappeared and I was fully aware of every little ache in my body.  Out came the prescription and I made the decision to take the tablet steroids instead. The play went ahead with me in it.

Two weeks on these little steroids pills and I wasn’t feeling so great anymore. They were re-named in my house as ‘the bad tablets that make mummy angry’. I had turned into what I can only describe as superhero villain over night. When the red mist came down, I felt like the Incredible Hulk, I just wanted to throw chairs and smash up my entire house. The family stayed well out of my way during these moments, which were becoming more frequent as the days passed and life as we all knew it changed. I was grumpy with a lot of people. People pissed me off. A huge dark grey cloud had arrived over my head and I was having a real hard time shifting it and sometimes it felt like an outer body experience.

The play finished with fab reviews.  I was so happy I had seen it through to the finish line and achieved an ambition. Just before the end of the run, I decided to come off the steroids. They were making me feel nauseous most of the time, giving me awful guts ache and I just couldn’t be faffed with feeling like I was about to commit grievous bodily harm through anger everyday. Also physically I was feeling fine, there had been no ‘flare ups’ and I thought that maybe the virus had gone already. I still had quite a wait to see my consultant again, three months, so what was the harm in just coming off them. I emailed my consultant and he said that as I hadn’t been on them that long, I could just stop taking them and let him know if anything cropped up.

A month nearly went by, I had been absolutely fine. No pains at all, no nasty steroids to take, life was getting back to normality and calm in my life had resumed once again. It was a really busy time for me with work in the run up to Christmas. At least once a week, I was up with the sparrows to get the kids to school and then catch a train from Norwich to London for a Voice Over in Soho and then back again in time to pick the girls up from school. Always a mad rush and sometimes a little stressful, but a great feeling when its finally achieved.

One of these mad dash weeks, I had to get the train from Norwich to London and back to Norwich again by the afternoon. I then had to collect my car as it was having its windscreen fixed and then drive down to my Mums house in Essex later that afternoon. She had just had an operation to remove her bowel cancer and I wanted to spend some time with her. I then had to drive to Brighton the next day from my mums for one of my best mates 40th birthday weekenders. It was going to be a busy and manic few days ahead, but I felt good and ridiculously excited about my weekend away after the last month of pills, anger and general shit that went with it. The drive to my Mums was a good 2 hours away from me and by the time I arrived in Essex, both wrists were starting to niggle, like I had trapped a nerve again. I wasn’t happy.

The next morning I woke up and they were still niggling! I was concerned. I still had another 2 hours drive to Brighton to do and knowing how my wrists had played up in the past when I had driven for a long period of time, I didn’t want to risk it, let my mate down or miss the fun in Brighton. So I emailed Dr X again to let him know that I had decided to start taking the steroids again to control any issues I may have after the long drive. Friday night was a BIG night. Lots of shots, laughter, dancing, more shots and then I passed out around 1am as drinking had commenced at 4pm. I have to admit I did feel pretty disgusted with myself the following morning as I wretched for the 4th time over a dirty loo! The party house was trashed, as was my body.

I managed to pull myself together and actually get my sorry hung-over to hell arse some fresh Brighton sea air. I even had a bite to eat and managed to keep it all down. I finished off my afternoon with another little nap before us party people were all to meet up for the big birthday meal in the evening. But my hangover was not my main concern, my wrists weren’t feeling great. I was anxious that if they really started to play up like they did a few months back,  I wasn’t going to be able to drive all the way home. And I needed to get home as my husband was leaving that Sunday afternoon to go away for work.  I just couldn’t risk being stuck in Brighton, feeling ill and jeopardize his work! So I had to bail out of the meal and the rest of the birthday fun.  Feeling pretty rotten and pissed off, I went to stay at my friends house down the road. The next morning, I felt like a new woman after an amazing nights sleep. I drove for nearly 4 hours, Brighton to Norfolk via collecting the kids from their Uncle Simons house in Hertfordshire, it was a long old schlep and my wrists were feeling the pressure! I paid the price when I got home, but at least I got home.

The email I had sent to Dr X prior to the Brighton weekender prompted him requesting yet another visit to see him at the beginning of December. That day I had a little thumb ache on the right hand and a ‘trapped nerve’ feeling on the left wrist, but had not taken any more steroids since Brighton. That was the day my whole world changed. Sat in his office with my husband for support,  Dr X told me that he was now convinced that I had rheumatoid arthritis. I’ll be honest; I didn’t really know what it was all about. I had heard about it, but didn’t know the real depth to the condition, let alone that it was actually an autoimmune disease. He sent me off to have x-rays on my lungs, to make sure they were clear and I was ‘healthy’ enough to go on the medication, Methotrexate (MXT), which would keep the condition under control and stop it from progressing.  I also had more blood removed from my veins to check my liver function.  This would now be monitored regularly while on MXT, as the chemo drug can cause liver failure!  He also got x-rays of my hands to monitor the progression of the disease.

Before  I left Dr X’s consultancy room, he said, “Whatever you do don’t go on forums or google anything, it will just scare you.”  I promised I wouldn’t and said that I hadn’t googled anything about it prior to the appointment. And I hadn’t, the reason for this was I was convinced that it was just reactive arthritis linked to a virus and exhaustion and that all would be over in a matter of weeks. I had absolutely no knowledge of what  RA actually was. As far as I was concerned it was just a form of arthritis, nothing major and in my beautiful world of positivity,  I presumed that I would be able to get over it all and sort myself out with a change of diet or something equally as simple. As I left the hospital with my next appointment for a week later, I felt slightly bewildered by it all.

Diagnosis – Early onset rheumatoid arthritis.

As I got into the car, I chose to ignore the advice he had given me all of 3 minutes previously. I immediately got on my phone to find out what this rheumatoid arthritis was all about.

Rheumatoid Arthritis

An autoimmune disease that is a life long condition with no cure, yet.  The immune system attacks the lining of the joints (the synovial lining).  This causes inflammation, which leads to symptoms such as pain and stiffness. It’s a systemic disease, meaning that it doesn’t just affect joints. RA can affect a person’s whole system, including organs such as the lungs, heart and eyes. If RA is not treated or is inadequately treated, it can cause irreversible damage to joints and lead to disability – and this used to happen often.  But today, the management of RA is very good, far better than it was even 15 years ago.  Although there is no cure, most people diagnosed today can expect to lead pretty full and active lives once the disease is under control.

Shit.

 

Click here to read what happened next.. xx

Doctors, Drugs and Dis-Ease

The first night after my diagnosis,  I went online to have a look at what I could do to ‘get better’. That’s when the floodgates opened and a tidal wave of tears came pouring out. It was a ‘holy f**king crap’ moment.  I had been diagnosed with a disease that was incurable.  A disease that cripples you. A disease that can actually shorten your life span. This was definitely not something I wanted in my body. I had so many questions running around my head. The loudest one being “REALLY?” and “HOW?” It made absolutely no sense to me at all. I mean how the hell do you just wake up with rheumatoid arthritis (RA)? HOW???

I started to read up on the drug Dr X had prescribed me, methotrexate (MXT).  I have always been the type of person that doesn’t  take a pill if I don’t really have to.  So when took in all the information about it, panic set in…

As with all medications, methotrexate can sometimes cause side-effects. Methotrexate may cause nausea (feeling sick), vomiting, diarrhoea, mouth ulcers, hair loss (usually minor) and skin rashes. 

It can also affect the blood (causing fewer blood cells to be made) and your liver. You’ll therefore need to have blood tests before starting methotrexate and at regular intervals while you’re taking it. You may be asked to keep a record of your blood test results in a booklet, and you should take it with you when you visit your GP or the hospital.

Methotrexate can affect the lungs so you’ll have a chest X-ray before starting it. Patients suffering from long-term lung diseases like fibrosis or emphysema are often not suitable for methotrexate.

You must not take methotrexate unless you’re having regular blood checks. These are usually done every two weeks when you start on methotrexate and the dose is being built up, then every six weeks when you are on a stable dose. Because methotrexate affects the immune system, it can make you more likely to develop infections. You should tell your doctor or nurse specialist straight away if you develop any of the following after starting methotrexate: 

  • a sore throat, fever or any other signs of infection
  • shortness of breath
  • unexplained bruising or bleeding 
  • yellowing of the skin or eyes (jaundice) 
  • any other new symptoms or anything else that concerns you.

Still completely bewildered by what was happening in my body, I decided there must be a more natural approach to dealing with RA. The more I researched, it seemed that many people had got it under control with diet.  I found out that there were certain foods you had to avoid completely, like the night shade plant family. They consist of  tomatoes, potatoes, aubergine, chillies, peppers, paprika and cayenne pepper. There was also a lot of information on how  dairy,  gluten, sugar, red meats and processed meats are all inflammatory foods and best to be avoided.  Even though it left me with not many ingredients to cook with, I was determined to heal myself this way and move on from this current situation.  It was harder than I expected. I found that I just didn’t eat because I was worried that it might cause a ‘flare up’. I started to get a bit of a problem with food and this left me hungry, unhappy and incredibly teary.

Not eating much and consuming  the steroids daily, was not a match made in heaven. These little pills did their job in taking the pain away but they also made me an emotional wreck and scarily angry. Life had hit a new all time low and with Christmas only being only a few weeks away, I was already getting anxious and upset about what I wouldn’t be eating. Christmas is my favourite time of the year. I blumming LOVE CHRISTMAS. I love the decorations, the buying gifts for people, I’ll be honest, card writing is a ball ache, but the christmas dinner and singing the christmas songs and watching The Polar Express for the umpteeth time is AWESOME. However, on this new diet of dust, my beloved christmas dinner was not going to be that great. There would be none of my favourite christmas foodstuffs on my plate, no roast potatoes with lashings of gravy, no sausages wrapped in bacon and no stuffing, no warm mince pies and cream. They would all be off the menu and I would have to cook it all and then watch the rest of the family enjoy the feast instead.  And just to add to my festive cheer, because I was about to start the prescription of Methotrexate (MXT), I would only be allowed 11 untis of alcohol a week, due to the effect the drugs would have on my liver. But to be honest, I was so concerned by the side effects of the drug that I didn’t want to drink at all, I was scared about the damage I might do to my liver, 11 units or just 1 unit.

So, freaking out about my current diet plan and a rubbish christmas to be, I decided that maybe if I did a food allergy test, I would be able to rule out foods that I really couldn’t eat and add in the ones that I could. So I booked an appointment to see a nutritionalist called Catherine Jeans.  She was wonderful and listened to all my concerns and current diagnosis. She was completely in the know about autoimmune diseases  and pointed me in the direction of adrenal fatigue and leaky gut syndrome,  which both are linked to the condition.  Everything she said made complete sense.

What is leaky gut?

Leaky Gut is a syndrome linked to many Autoimmune Diseases. It’s  the name given to a very common disorder in which the cells,  lining the intestines become “leaky” due to inflammation. The inflammation creates abnormally large spaces between the cells of the gut wall,  allowing  toxic material to enter into the bloodstream that would normally have be eliminated. This toxic material can be  in the form of bacteria, fungi, parasites, undigested protein and fats that the bloodstream would not normally absorb if the gut was in a healthy state. Protein molecules that are absorbed before they have a chance to be completely broken down are recognised by the immune system as foreign, in fading substances.  This cause the immune system to start making antibodies against these larger molecules which were previously seen as harmless food, causing an ‘overreaction’ to substances that are not actually dangerous. Because human tissues have proteins and antigens very similar to those on foods, bacteria, parasites, candida or fungi, this causes confusion within the immune system and the antibodies created by the leaky gut issue and the antigens, can then get into various tissues and trigger an inflammatory reaction within the tissue when the food is consumed.

Leaky gut syndrome is more often than not associated with autoimmune disease. It’s said that reversing symptoms of autoimmune disease depends on healing the lining of the gastrointestinal tract. Other medicated treatments just suppress the symptoms. An autoimmune disease is where the immune system makes antibodies against its own tissues, basically attacking itself. Diseases under this umbrella  include lupus, alopecia areata, rheumatoid arthritis, polymyalgia rheumatica, multiple sclerosis, fibromyalgia, chronic fatigue syndrome, Sjogren’s syndrome, vitiligo, thyroiditis, vasculitis, Crohn’s disease, ulcerative colitis, urticaria (hives), type 1 diabetes and Raynaud’s syndrome. It only a recent development that doctors are seeing the connection between the gut and the role it plays with disease.  If this inflammation occurs in a joint, autoimmune arthritis (rheumatoid arthritis) develops.

Another amazing fact regarding  leaky gut, is that it may contribute to a long list of mineral deficiencies because of the ongoing inflammation and damage to the carrier proteins. The most common are iron deficiency, vitamin B12 deficiency, magnesium deficiency which can lead to fatigue, neuropathies or muscle pain. Zinc deficiency due to malabsorption can result in hair loss or baldness as occurs in alopecia areata. Copper deficiency can occur in an identical way leading to high blood cholesterol levels and osteoarthritis.

I left there with renewed hope that my gut instinct was right all along, that I didn’t have RA, that I just had a ‘gut’ issue and I would be able to heal myself if I stuck to her diet plan. I also spent hours on the internet trawling for other people who had controlled /rid themselves of RA through diet. I found a few,  but there was this little voice in the back of my head shouting at me,  that if I didn’t take the meds I would be also in a lot of trouble down the line health wise. The consultant Dr X had said that we needed to control the RA asap or it will take hold of my body and then there is no reversal.

I was scared as to what was best, so I emailed him. I just wanted to know if he had an opinion of people controlling their RA with diet. His response was that he did and it had never worked out well for them. So Dr X and the voice at the back of my head drowned out my gut instinct and I decided to start the MXT on the following Monday as originally planned.

The first time I took them was after dinner on a Monday night. It was Dr X’s recommendation for remembering when to take the drugs.  M for Monday and for Methotrexate. F for Friday and Folic Acid. I had read up a little on taking the drugs by other users. One recommendation was to take them after a big meal in the evening, that way you have the worst of the symptoms that evening.  I won’t lie. I sat at the dinner table with tears rolling down my face looking at these tiny little bright yellow pills. My gut instinct was still screaming at me that I didn’t have RA and this was super crazy to be taking these hard core chemo drug.  The turmoil in my head was intense and one of the other issues I had was how was my body was going to react to it.

But after consuming my dinner of vegetables and roast chicken, I swallowed down 6 little pills. 15 mg of MXT was making its way into my system. It was fairly instant when they hit my stomach, it was if I had just drank a bottle of acid, it felt like it was burning a hole in my stomach. I went light headed with the pain and dragged myself to the loo to pull myself together away from the eyes of my two daughters.  My Husband was away with work and I knew I had to push through the pain to get my youngest into bed, luckily my eldest daughter could see the agony I was in and helped me yet again get everything sorted.  Once I got myself into bed,  I felt nauseous, it was just like morning sickness and when morning came around, not only had I had a crap night sleep from feeling so rotten, the nausea was still there. In fact it  lasted for three long days. I drank as much water as I could every day, knowing that the liver was the one to get the brunt of these pills,  as well as my immune system! I actually felt guilty that I took the pills and what I was doing to my body.  My poor army of fighter cells, were being put to sleep by the big bad MXT,  but they were definitely giving a good old fight back and that’s why I was feeling so rotten. Now my immune system was being suppressed, I was also now suspectable to most lurgies and with my youngest just starting school and being mid winter, I became really aware of my environment.

That first week, it occurred to me that I should have probably had a stomach liner tablet to protect it before I took MXT, I couldn’t take a nurophen on an empty stomach because of it and these tablets were a lot stronger.  I remembered telling  Dr X about my past stomach issues and that I had been diagnosed with an internal bleed a few years previously. Surely he should have given me something to protect it. I didn’t know who I should be speaking to regarding this matter,  should I call 111 and speak to a doctor over the phone, or becasue I was private did I just email Dr X directly?  So I just thought sod it, I‘ll email him again. To which he replied.

Good idea.

It wasn’t just the sickness that was an issue,  the next couple days I had a terrible wheezing and felt tight in my chest. It was sporadic and when it happened it was scary! I wasn’t sure what was going on and in the information leaflet on side effects of MXT its states that if you have a tight chest or dry cough to seek medical advice immediately. So I messaged Dr X again. He told me not to worry. It was probably at this point I should have asked him who I speak to regarding worries like this, but I wasn’t really firing on all cylinders.  I felt vacant, numb, highly emotional and constantly nauseous with the combination of  MXT and steroids wreaking havoc with my system.

A few of my friends and family had mentioned to me that they had read or heard about Lyme Disease and thought that my symptoms matched up with that.  I looked into it and they were right, all my symptoms married up to Lyme disease but I knew that I had already had the test done and it had come back negative. However it turns out that a lot of the time you can have a false negative. I researched into this disease and the more I read the more I thought I may just have it. I lived next door to sheep. Sheep carry many tics and they are the type of ticks that do love to bite a human. My cats had bough in ticks too and I had removed them. Then there was the fatigue, joint pains and inflammation. Brain fog, dizzy spells, nausea, headaches.  You also don’t always get the target reaction to a tick bite and sometimes it can go un noticed. This was a light at the end of the tunnel I was looking for, I chance to get off these drugs and start to feel better. All you needed to recover from Lyme, if its caught early, is antibiotics,   So I emailed Dr X yet again before Christmas, asking to be retested for Lyme. Unfortunately he was away and messaged me saying that he would contact me when he got back. Damn it.

Over the Christmas period I got worse. It really was the worst Christmas we have every had as a family. I felt so sorry for my kids and husband. I could barely walk from one room to the next and when I did I looked like an old women hunched over, shuffling. I spent most of my time in bed or wiped out on the sofa. I had no motivation, no energy and didn’t want to do anything with anyone.  I just wanted to sleep. I have never experienced fatigue like it, at times it was an effort to breath. My poor body felt like it was on complete meltdown by the cocktail of these hefty tablets. I could feel the war gone on inside me, the chemical army invading  my already strained immune system. It certainly wasn’t a happy body and I knew it was because of the medication. With all that and the continuing guts ache everytime I took the steroids, I barely ate anything.

In the week between Christmas and New Year,  I was due my first blood test to check my liver funtion as I had been on MXT for two weeks. Against my husbands wishes, I had stubbornly driven to the hospital myself, trying to regain some normality in my life.  Sat in the waiting room of the hospital to be called in for my blood test,  Dr X walked past and saw me. He came over and said quietly,  lets have a chat after your blood test about the Lyme test. I was still waiting,  when he called me into his office to discuss the email I had sent. He told me that being re tested for lyme would be a waste of time and money (I was private at this point, surly thats my decision to make).  I asked him about my Anti ccp test and if it would ever ‘go down’ ?  He replied abruptly that it would never go down. I asked about my rheumatoid factor (RF) results, I had done some research on RA, and you would normally have a positive RF as well as a high anti ccp.   He said they were positive, with out looking at anything. He seemed a little exasperated with me by this point and said that I had to try and accept I had RA as it was classic symptoms and maybe I should speak to NRAS (national rheumatoid arthritis society) for guidance and help. He printed me off a few bits of information. It was just his manor with me at that point that made me feel really uncomfortable. He wasn’t rude, but just incredibly dismissive of my concerns. There was no compassion. I tried to hold it together, but as I left his room and walked down the corridor to wait for my blood test,  the tears just streamed down my face.

I felt so low when I left the hospital that day. I really wanted to rule out Lyme, so I knew I was taking these god awful pills for the right reason and not find out in two years that; “Oh sorry Abbie, you HAVE got Lyme disease, however your immune system is buggered up from the methotrexate” Surely it was my decision to have a lyme test as I WAS bloody PAYING FOR IT! I got home that evening and booked an appointment with my GP as I needed someone to talk to about it all. But because Christmas was only a matter of days away, she was on annual leave and not back until the second week of January. I was going to have to wait.

During the last few weeks of 2015, I continued my internet search for the answer or even better a cure. But the more I read about Lyme and other peoples stories, the more I believed that there could be a chance I actually had it.  It gave me so much hope and I felt  better in myself knowing  there may just be a chance I didn’t have RA. I found a place in Germany that I could get my bloods tested for Lyme.  It was a far more in depth test,  than here in the UK, not only did it do the ANA test, it also looks for DNA in the bacteria,  as well as the western blot test, which was way more accurate. I wanted to get this test done as soon as possible, because I could feel the effects MXT was having on my body, and it wasn’t good.

New Year came and went and my mum had called me to say she had just read an article on two woman who had been diagnosed with an autoimmune disease,  only to find out years later it was Lyme. They had been tested at Porton Down, the government testing facility. I laughed.. “Mum I can’t get the Government to test me for Lyme!”. “YOU CAN!!!” she exclaimed. “I’ve called them and you just need to take the form into your GPs and they can do it from there. You don’t have to pay and that will save you on paying out £500 for the test in Germany!”  I called Porton Down and asked them myself , it was true, I could get tested . So,  I went to my GP’s  appointment in January, armed with the Porton Down request form and all my blood test results that I had done privately.  I sat there in the waiting room, incredibly nervous, my doctor  is gonna think I’m nuts!

I didn’t have to wait to long and she called me in. I walked into her office, sat down in the familiar chair and burst into tears. I am not sure if it was because I knew the reaction I was going to get from her or if I was just so upset generally about the way I felt around Drs at this moment in time. They always made me feel like I was a hyperchondriac, making up my illnesses. I had also been taking steroids now since the end of November and they had completely taken over my emotional / mental state. I had absolutely no control of my tear ducts whatsoever. After pulling myself together and apologizing profusely, I was told that I wasn’t the first to ball in front of her that morning and she sat there waiting to hear why I was in her office this time!

I explained how I felt and that I wanted to be re tested for Lyme disease. I also asked her to explain the Anti CCP test to me, as I was still really unsure how the bloody thing worked and was it only used for RA? Is there any other reason that an Anti CCP can be raised, could Lyme do that. She didn’t know and said she would look into it for me. I then offered up the Porton Down test and explained about the two ladies in the newspaper article. It didn’t go down as well as I had hoped. She had never seen this form or heard of sending blood tests there. I explained that I had also called Porton Down the day before and spoken to a lovely lady that had said all I needed was for her to fill in the form.  I would then get my bloods taken by the nurse at the surgery, who would send them onto the the local hospital  and then they would  forward them onto Porton Down. Dr D  looked utterly perplexed, She wanted to look into it as was unsure the NHS covered this type of thing. She then dropped the bombshell that  she also would feel like she was going behind the consultants back getting this test done and I should really ask him. My heart sank, I suddenly felt so alone on this journey. I told her about the meeting before Christmas and how he refused to oblige. She started looking at my notes on the screen and said, “well the last Lyme test came in negative didn’t it?” “Yes” I said, even more deflated. Sifting through all my private blood test papers in front of me, I then told her that I couldn’t find my RF test results on them and could she show me.  She took at look at them and said it wasn’t on there and then looked at my notes on her computer screen and said, “well , when we did it, it came back negative” “But Dr X told me it was positive!?!?!?” I said slightly concerned!  Noting my concern for the whole situation,   she asked if I wanted to get a second opinion. By this point in the appointment, I was mentally drained and definitely wasn’t in the right frame of mind to make any decisions about anything. So I asked her what she would do in my position. She said she probably would get a second opinion. I thought about it for a few seconds and all that went through my mind was that he would be really upset and it could cause me embarrassement. So I declined.

I spoke with her on the phone few days later to double check about the rheumatoid factor result. She repeated the same information. It was negative. I needed to check this out.

The meeting started as it always does, the questions of how I am and how I am feeling. I explained how exhausted I was over Christmas and how my stomach was in a really bad way. Every time I ate it caused such pains. He said the exhaustion was just typical RA and I was taken aback and even responded with, itsn’t it the medication. He snapped back queicklly, “no, No its not” and then changed the subject. He did this a lot and this is one of the reasons I felt so uncomfortable with him.

He then asked how I was ‘accepting’ my diagnosis. To which I promptly burst into tears. “I would just like a Lyme test, so I can rule it out” . He didn’t even waver or shut me down.. He just agreed! I left his office feeling really good, because I had been heard and felt that I would get answers, whatever they were I could rule it in or out. Hurrah.. But what I found interesting was the difference in him when my husband was there. He agreed to doing it. I knew that if Curtis hadn’t been there.. He would have said no.

 

What was interesting was it took nearly 4 weeks for me to get that test sorted. I had to email him and chase him up after a month to ask if I could get it done. The day I had my bloods, he happemed to walk into the phelbotomists room and looked really disappointed to see me. “oh you’re here” he said in a very nasty tone. It was at that point I realized that he didn’t really like me that much, I was too much of a pain asking too much and emailing too often. But I didn’t know who else to contact, I didn’t have a rheumatology to ask questions and he was my consultant that I paid £150 each time I saw him and was ever hopeful that I wouldn’t have to see him again if my results came back poisitive for lyme.

 

The next appointment with  Dr X  was the following week.  I really didn’t want to see him alone and thankfully my husband was off work and so I took my him along for support.  I went armed with written down questions, so I wouldn’t forget and a Porton Down test form. I was as nervous as hell.  We were called in and Dr X seemed very relaxed when we all sat down, asking my husband about work and where he had been and what he was working on. We then eventually got onto me. He asked the usual questions of how I was and how I was feeling. I explained how my stomach was in a really bad way and every time I ate it caused it was incredibly painful. I thought it was down to the pills and I really wanted to come off them as I suspected it was them doing me some damage and how incredibly exhausted I had been over Christmas. His response was; “Well the exhaustion is just typical RA”.  I have to say I was taken aback and even managed to respond with;  “Isn’t it the medication making me feel so fatigued?”  He seemed to forget my husband was in the room for a brief moment as he snapped back quickly, “NO, no its not” and then realising quickly changed the subject.  “How are you accepting the diagnosis?” At this point the flood gates opened. My husband held my hand as I took a few moments to pull my emotional self together; “I would just like a Lyme test, so I can rule it out”. Without a blink of an eye, Dr X agreed to get it sorted. He took the form and gave it to the nurses to look into costs. I was getting testing for Lyme!

He also agreed to lower my dose of steroids slowly from 10mg per day to 7.5mg per day for a week and then lower it again to 5mg a week after that. This was music to my ears. He gave me a prescription for 2.5mg of Prednisone. What I didn’t know at this point was that you could actually get the steroids I was taking with a gastro coating to protect the lining. WHY THE HELL wasn’t I prescribed these in the first place when he knew about my stomach issues!!!  I only found this nugget of information out when the pharmacist said, “I am really sorry but I only have the ones with the gastro-resisitance coating ones, is that okay?” At the time I really didn’t think anything of it, as I was in one of my hazy, utterly shattered, feeling sick days. But when I got home and had time to think about it, I couldn’t believe that he never gave me these in the first place OR even after my email stating that I needed gastro resisitant tablets for the MXT that he let me take the steroids for weeks and weeks, damaging my already rather sensitive tummy. But instead of making a big deal of it all, I just got rid of the other ones and started taking three gastro resistant tablets instead. The pain didn’t go away though, even when I had finished the steriods. It was still an unhappy tummy and I decided to look up natural ulcer remedies because there wasn’t a cat in hells chance I was going BACK to the GPs again. Not with another complaint. Dr Google stepped in again and two days of raw cabbage and carrot juice, I had never felt better. My poorly tummy felt a million times better.

Back to the appointment with Dr X.  As I left him room he walked with us to his next victim, I mean patient and I mentioned that I was hoping to be off the mxt soon. His response which has stuck with me like glue.. “If you come off that drug, I will no longer be your doctor”. Even though we had parted on such words,  I skipped out of the hospital that day. For the first time I felt that I had been listened to and would now get the answers I had been dreaming about over the last month, whatever the outcome. All my anxieties had just lifted.

A few weeks later  after chasing the nurse, I finally got a price for the blood test. It was looking at about £700! WOWsers.. but as my family all said, health is the most important and so we decided to go ahead. A few weeks after that, I got an email from Dr X saying that he had spoken to Porton Down personally. They had said that there was no point having their super duper blood test done if my Elisa (ANA) test came back negative already. I was absolutely gutted. The test wasn’t going to happen. The message continued, so why don’t you get your Elisa (ANA) test re done to check. Completely and utterly deflated I agreed. It wasn’t easy to get that sorted either. I had to wait for the ANA blood test to be set up by Dr X. This then took an astounding 4 weeks to get sorted. I had to email him (yet again) to find out what was happening. Eventually I got the date and the day I had my blood test, Dr X happened to walk into the phelbotomists room and looked really disappointed to see me. “Oh you’re here” he said in a very nasty tone and then turned asked the nurse something and walked back out again. It was at that point I realized that he didn’t really like me that much. I was obviously too much of a pain and emailing him questions too often. But, in my defence,  I didn’t know who else to contact, I didn’t have a rheumatology nurse to ask questions. He was my only point of contact, my consultant,  the one I paid good money for, each time I saw him. I was ever hopeful that my Lyme would come back positive and I would never have to see this bozo again.

I finally got the results. Dr X sent me an email, in which he stated;

The lyme test was negative.

However, by this point the lyme test was no longer as important.  Another major reason for my health being as bad as it was had come to light, my 14 year old silicone breast implants.

 

Click here to read more…. x