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.
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.
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