5 Months Later….

Wow it really has been a long time since I put fingers to keys. So much to tell you that I have no idea where to start.

Well, it is still a rollercoaster of emotions and unfortunately I am still suffering with some pain. However nowhere near as bad as when this all first started. So I know I am improving. I am still on naproxen, but I can go some days without taking it at all.. like today. This makes me super happy. I still can wake up with a sore finger or toe and mainly the balls of my feet, but it soon disappears throughout the day and then may reappear in the evening. My wrists are.. touch wood…. fine, and I have been writing and using the computer, so all positive signs.  I am still taking LDN (low dose naltrexone) it is around 6 months now.  I really think it has made a huge difference to my day to day.  I take 2.5mg every night before bed. I definitely herxed (detox reaction) when I first started taking it, with it heightening all my symptoms and pains. But after a week or so, that died down…. until I increased the dosage by another 0.5mg and then I would have to go through it all again., tres dull. I am now settled on 2.5mg dosage, which works for me. and I am so glad I tried it and it is working.

I am STILL detoxing… eugh… over a year now that I have been ridding my body of copper.  Since the last time I posted, I have had another Hair Mineral Anaylisis (HMA) test done. The results came back with my copper levels rising back up considerably from 8.6 to 11.6.  This is really common with copper toxicity. Catherine, my nutritionist explained it like emptying out the kitchen cupboards. Once you clean out one, you have another to do.. so I am not concerned by this at all,  just a teeny tiny bit bored of detoxing!!! The results also showed up that I am now detoxing lead, as the levels have also risen.  I spoke with Nicole Daruda, the amazing lady who started the US Breast Implant and Healing group and pretty much saved my life, she told me that lead is the heaviest metals and so one of the last to go. Metals come out one at a time over a period of time, starting with the lightest by molecular weight to the heavier. Also lead won’t come out of our systems, until we have adequate calcium and iron. So the fact that I am finally eleminating lead, is a GREAT sign. Light at the end of the tunnel……maybe!

Moving onto my favourite subject, my anti CCP count.  As always, when I get my HMA testing done, I like to get an anti CCP done at the same time. Last count was 57.5 and so I was presuming that after another 3 months of detoxing,  it would be down to 20 or maybe even in the single figures.

WRONG!!!!!!

I was shocked to get the results back that it was 196. ONE HUNDRED AND NINTY FORKING SIX?!?!?!?!  I cried. A LOT.  However after drying my eyes and getting my HMA results a week later, I realised that it could be yet again a correlation between the high copper and the anti CCP count. As the copper rises, maybe so does the Anti CCP.  I won’t be doing another test now until Christmas/ New Year 2018. Until then, I shall continue my quest for normal copper levels and uber health.

 

Finally.. in other news, I have started a degree. I am now studying Nutritional Therapy. It is facinating, mind blowing and hard but rewarding when it all sinks in.

Thanks again for all your support and love. Stay healthy y’all xxx

Failure Report, Rheumy, Results & Me

The last time I updated was two months ago.  Its been a long two months full of fun with a new rheumatologist, wrist/hand inflammation and many blood tests. I also have had another Hair Mineral Analysis test done and got my long awaited implant failure report back from Dr Blais in Canada.

IMPLANT REPORT

Lets start with Dr Blais.  He is THE leading expert in the field of faulty breast implants,  who is located in Canada. He used to be a research chemist and expert in the biocompatibility of implant materials. Blais joined the health protection branch of Canada’s Department of National Health and Welfare in 1976. He became concerned with the potential harmful effects of breast implants on women and was invited to testify as an expert witness in lawsuits involving the implants. I sent mine to Dr Blais to have them

  1.  identified, as they were nameless
  2.  to see if they had failed whilst inside my body
  3. see if there was any link between my diagnosis of RA (rheumatoid arthritis) and my implants in any way.

It took nearly a year for him to send back the 50 page report after analysing my implants, this was due to many other women sending their implants to be analysed by him and the fact he is an expert that testifies in court regularly.

I can not tell you how relieved I was to find out from his report that both my implants were faulty from the outset. Sounds crazy,  but I finally felt I had proof that I wasn’t a hypochondriac or clutching at straws to find reasons for my RA diagnosis.  Dr Blais reported that the patch workmanship was poor on the right with gross deformation of the patch lap and passable on the left with the exception that there was a gap between the patch center and aperture, which in some parts was open by 0.5mm. The gel inside the implants was unstable and reverted to a brittle substance and separate bioinvasive oil. This oil had the capacity to effuse through the patch and its defects and disperse into my tissue. Which my histopathology results confirmed also after explant, stating that there was silicone debris found in the scar tissue (capsule).

According to Professor Blais, the longstanding hematoma that was present on the right hand side would have initiated formation of antibodies to blood products and may account for some of the symptoms I have experienced. He stated in the report that upon removal of the implant and its capsular material, the formation of antigens would cease or at least diminish and the titre of antibodies would be expected to decrease over time.

This information completely correlates with my current set of anti CCP results. *does a little celebratory jiggy dance*

RHEUMY NUMBER 3!

After having trouble with the inflammation in my wrists and the ultra sound in April. I was referred back to rheumatology. I got to see Dr N this time. Before my consultation I decided to send her a 3 page letter with sections of Dr Blais report as evidence. I also included an incredible report from 3 rheumatologists in the Netherlands who have studied the effect of silicone breast implants and rheumatic autoimmune diseases. ( You can read it here) This report could have been written about my journey, my symptoms, even down to the vitamin D deficiency!! For someone suffering with issues relating to silicone, it was a joy to read and know there are medical professionals out there that actually believe a connection to silicone and illnesses and take this ‘grey area’ to others, very seriously.

When I arrived at her clinic, she invited me into the room,  where two medical students were waiting to learn more about rheumatoid clinics and patients. She thanked me for my letter as she closed my file and didn’t even bother to go over it or discussed any of its content. She then looked at my hands, squeezed them, I told her when they were tender and she said that I had inflammatory arthritis, aka RA. Now,  I am not good in these situations or clinics and my emotional dial is turn up to the max… cue leaking from the eyes in abundance! I did manage to get a few questions out through the tears, one being, “What about my anti CCP count decreasing so much in less than a year”?  her response…. ” It means nothing, you still have RA. You need to forget about the anti CCP count, its not a disease marker and even if it was zero, you would still have RA”  She ended it with she wouldn’t test me for an anti CCP count again. EVER.

Flood gates reopened…

Whilst I tried to control the blubbing, she told me all about how amazing immunosuppressants are, how her patients beg her to keep them on the meds because they feel so amazing, even her daughter begged her for methotrexate recently when she had a health problem! Wow so much begging, this immune shizzle just simply must be amazing!!! How did I ever doubt it? Sign me up NOW, I beg you…

Obviously I didn’t say that, I just said I had another option I wanted to trial first and left with my tear stained, blotchy face. I cried like a loon for many hours after, mainly in frustration that I didn’t even ask her questions about my letter. Also because all the hard work I had done detoxing, avoiding foods, changing my lifestyle, at that moment felt like   it had been for nothing.  I was also really confused because now,  I had two rheumatologists saying two very different things.  One saying an anti CCP never goes down only goes up and I would be defying medical science if it went to zero and the other one saying it makes no odds and means nothing. These two rheumatologists work in the same hospital but obviously attend different classes in anti CCP counts!  To be honest it was an absolute head f@@k!

Once I pulled myself together, yet again, I found a website that does private blood tests at Spire Hospitals. So I booked myself in for another anti-CCP test just to see what the latest reading would be. I needed to know if it had risen or was still going down with all my detoxing.

 

ANTI CCP number 5 (I think)

Last count in February was 97.5. It had dropped 186.5 points since the last one in July 2015 which was 284. Anything above 10 is classed as raised.

So this time…    57.5

IT WAS STILL DROPPING… so completely correlating with Dr Blais’s report and how the formation of antigens would cease or at least diminish and the titre of antibodies would be expected to decrease over time. BOOM, BOOM and bloody BOOM

Although I have to admit, Dr N got in my head. It took the shine off the sparkling results. Was she correct? Do I still have RA? Should I take the wonder drugs all and sundry beg her for?  ARHHH.. this drove me mad for a week or so, but then I decided to try out my other option….

Low Dose Naltrexone- LDN

The best way to understand LDN is to click on here. LDN in the last decade has been recognised to have immunological effects that are reported to be beneficial in autoimmune diseases, cancer, autism, depression and more. LDN has hardly any side effects and they mainly happen when you first start taking it, the main one being insomnia. This normally stops after the first few weeks. This was all music to my ears, compared to the immunosuppressants. I also had first hand experience with methotrexate and really did not want to go back to that nasty little drug, which wiped me out for three months. The one I begged never pass my lips again.

In many studies, LDN has shown to support the immune system by improving the balance of the guts microbiome and that it can be an important therapy that helps the gut to heal.  It has also shown to improve the bodies ability to eliminate and manage toxic exposure in several ways. It improves glutathione levels, which aids detoxification. It decreases oxidative damage caused by toxic exposure, making it easier for the body to clear the toxins. It helps to repair the damage to the epithelial cells of the gut and the brain that are caused by toxins. (information taken from THE LDN BOOK – Linda Elsegood which is a fantastic read and super informative )

So what did I have to lose? Nothing. I contacted Clinic 158, sent them the latest letter from Dr N stating I had RA, and voila I got prescribed LDN.  A GP in the UK will not prescribe this medication for autoimmune conditions, you have to go through Clinic 158.

I have been on LDN now for a month and I am starting to see an improvement in my symptoms, I have less problems with my hands, and the inflammation is definitely decreasing.  I still take two naproxen every day and I will do for another week or so and then try and come off them slowly.  The key to taking LDN is definitely LOW AND SLOW. I started at 0.5mg for a week and then put it up to 1mg for another week, raising it again to 1.5mg. I had to go back to 1mg as it wasn’t working for me, I couldn’t sleep that well at all. I did have a few side effects when I started,  sleeping lighter, more muscle pains and candida as well as a herx reaction.  I will continue to take LDN for at least 6 months. Or until my anti ccp count is at zero.. then I may come off LDN and see what happens.

It hasn’t been an easy ride though.  I had a herx reaction for at least 2 weeks when I started LDN. The Herxheimer Reaction (herx) is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms.  This isn’t just down to the LDN, I also started another round of the copper detox protocol after I got my latest Hair Mineral Analysis test back, so it was a double whammy on my body. I have been detoxing very hard in a short amount of time  (4 weeks) and its played havoc on my mental and physical state, but it definitely has settled now and I feel like I have turned a corner.

Hair Mineral Analysis Test

Catherine Jeans my nutritionist said my latest results are actually looking good. This is what she told me.

When copper is detoxified, it tends to come and go in cycles – as the body empties one storage site, this can make you feel better short term, but then it starts to empty another area. It’s like cleaning out individual kitchen cupboards. So actually this is a positive sign. Generally as well your overall mineral status is better – some nutrients levels are going the right way. Also molybdenum being high may be positive in terms of copper balancing.

So I am doing well. This copper detox is a tough one and for anyone currently enduring their copper detox and reading this, I truly feel for you. Its an emotional roller coaster, especially in the first few weeks you start. I am really looking forward to this being over and done with soon. However the next test will be a gut microbiome retest. It has been nearly a year since I did my last one and as bad bacteria thrive on copper, its worth having a good look inside my body to see whats happening.

If you are considering detoxing, I would strongly advise doing it through a highly qualified nutritionist and getting the right tests done. This way you are in the know about what your body truly needs and how you can deal with any problem areas. You can also retest to see your progression throughout the process. It really has been a life saver for me during some incredibly dark days of detox. To have visible results from a lab in front of me and seeing the improvements over time is a real boost to continue and   get my health back.

Tests I would recommend.

  • Hair Mineral Analysis test (using a nutritionist to read the results and recommend supplements)
  • Gut Microbiome test (again using a nutritionist to read the results and recommend supplements and dietary needs)
  • Blood Tests : Vitamin D and B12
  • Adrenals (again using a nutritionist to read the results and recommend supplements and dietary needs)

 

I will update after this round of detoxing and the next set of retests.

Over a year on, I am starting to see a glimmer of light at the end of what has been a reeeeaaallly long dark and dingy tunnel.

Happy Healing

Abbie x

 

One Year On….

Today is my one year explant anniversary. It has gone by so quickly, even though there have been some incredibly tough times during the last 12 months.

Most of my symptoms have gone. I no longer suffer with hair loss, fatigue, dizzy spells, crazy headaches (although I have had a two in the year and put them down to detox). My periods have become regular, although still heavy. My chronic neck ache that I visited an osteopath most weeks, has gone. Brain fog, poor sleep and constantly being ill with colds all gone.

I still have tinnitus and even though I haven’t had any joint pain, like I did post explant when I was first diagnosed with rheumatoid arthritis (RA) at the end of 2015, I have suffered with discomfort in my wrists now for many months.

As my wrist and hand joints weren’t stiff or swollen, I just put it all down to tendonitis symptoms. However when the pain got so bad over the last few months, with significant small swellings in each wrist, I decided to go back to see a GP.

Diagnosis : ganglions

I was then referred to see a consultant, who also agreed with the diagnosis, and I was sent to have them drained.

The ultrasound on my wrists to removed the ganglions was first thing this morning. However, it turns out that they aren’t ganglions after all!!

The scan has shown that my wrists are in a current state of inflammation.  I was obviously hoping it was something as simple as a ganglion pressing down on tendons that was causing the issue, not another symptom and sign of RA.  I was treated with two steroid injections in each hand, and I now need to re book with rheumatology and see what they say.

I have to admit this has thrown me somewhat and tears have been shed. With my anti CCP count dropping so drastically over the last 6 months from 284 to 97.5, which I was informed would never happen,   I really thought I was heading down the right path to a ‘normal’ life.  Especially as my recent Hair Mineral Analysis results have shown that my copper has dropped by another third,  which also correlates with my anti CCP drop.

I will still continue to detox for the next 4 months to remove the last of my high copper and I obviously hope that my anti CCP will also drop down further.  But what about these dastardly wrists!! Why are they inflamed if it isn’t RA?!?!

I know that my health is so much better than this time last year. For that I am truly grateful. But I have to admit, I am tired of detoxing, tired of watching what I eat and tired of the battle with consultants regarding the ‘grey area’ of implants. My positivity is waning today, but after a good nights sleep, I’ll just bounce back and find the fight again.