Journey into the unknown with Lyme disease by Kate Lawlor
It is hard to say where it all began, as I am honestly not sure. In 2002, I took my young children to a nearby picnic area. We sat in a grassy area by a lake and then we went home. Two days later, I had mild flu like symptoms and my fingers became slightly swollen. I could not get my wedding ring off and my joints were aching. I went to see my GP. He said I had probably picked up a virus and the symptoms should pass. I thought nothing of it, and indeed, the symptoms did clear. I have never had a bull’s eye rash, or at least not one I noticed.
I have always had robust health, and taken very good care of myself. I loved Nordic walking, and would regularly go out for walks in long grass, often with short trousers and bare legs. I also went wild camping on the west coast of America back in mid-nineties.
In 2008, I began to experience cycles of shivering and general malaise, usually early evening. Nothing would keep me warm. These episodes normally lasted a few days and would return every few weeks. Another feature was pain in my lower ribs, which seemed to coincide with the malaise. I also experienced periodic bouts of feeling weak and shaky, as if I had just run a marathon and was low on blood sugar. I went to see my GP, who arranged some routine general blood tests. They showed that I was mildly anaemic and my inflammatory markers were slightly raised. As I was a bit of a puzzle, I was referred to a Consultant physician, for another opinion. I recall the outpatient appointment well. The consultant said he thought I probably had a virus, and no action was needed.
I felt that at least I had had it checked out, and had better just get on with my life and try and put it to the back of my mind. Part of me wondered if it was psychosomatic. Was I just being a wimp and it was all in my head? After all, the consultant I had seen did not think it was anything to worry about.
Apart from these periodic episodes of shivers and malaise, the next few years passed in reasonable health, and I continued to do regular Nordic walks and keep busy. I was working as a district nursing sister while juggling being a mum to my two young boys, and life was pretty busy. I was also doing a post graduate certificate in diagnostic reasoning, clinical assessment and independent nurse prescribing. It was during this study that western blot and ELIZA tests were mentioned by our American lecturer, in relation to lyme disease. I only vaguely registered it, as it did not sound very relevant to my area of work. However, somewhere it must have lodged in my subconscious, and later came to mind, when I was looking for a possible explanation for my rather bizarre symptoms. During these years, I never took a sick day, and when the episodes of malaise surfaced, paracetamol became a good friend, and saw me through the day. Over that period, the only other symptom of note was a more than average tendency to episodes of tendonitis and plantar fasciitis.
My job as a nursing sister was becoming busier and busier, and I was spending more and more of my evenings playing catch up with all the paperwork. I felt I was living life in the fast lane; family life seemed to be taking second place. As I had worked in the NHS all my adult life, I was eligible to take early retirement when I hit 55. So, in June 2015, I left my job. My plan was to take the summer off and return part time as a bank nurse .However, this was not to be.
Within only a couple of weeks of leaving my job, I started to feel more and more unwell. I had never experienced anything like it. My ribs ached; my elbows and knees became tender. Small pockets of fluid developed below my knee caps. The back of my head felt as if it was on fire and painful to lie on at night. I remember taking my 86 year old mother to our local town. I could not keep up with her, and walking only a short distance, was like climbing Everest. I could barely drag myself around. I went to my GP, and he requested a whole barrage of blood tests. A few days later, I booked to see him. The blood test revealed that I had a slightly raised rheumatoid factor, and one of my inflammatory markers was up. The doctor felt that I was probably in the early stages of rheumatoid arthritis; the fact that I was menopausal, he felt, was why it had chosen to surface at this particular time in my life. He agreed to give me a prescription for HRT, to see if this would ease things. He felt it was too soon to refer me to a rheumatologist, and the best action was to watch and wait and use ibuprofen to relieve symptoms.
I came home devastated by the likely diagnosis of rheumatoid arthritis. Being a person that likes to know the facts, I did some searches on line, particularly looking for any possible other causes for my symptoms. I stumbled upon the possibility of lyme disease as an alternative explanation for my symptoms and promptly contacted my GP to ask for a lyme test. I was lucky that he was happy to do this. Meanwhile, I was feeling more and more unwell, and had even contacted the rheumatoid arthritis charity help line for advice, only to burst into floods of tears on the phone! I was reassured by a kind person at the other end of the phone, that my symptoms were fairly classic, and the sooner I started DEMARDS (rheumatoid arthritis drugs), the sooner I would start to feel better! I felt pretty devastated and anxious, but tried to be positive.
Three weeks later, having not heard back about my blood test for lyme, I had pretty well resigned myself to the fact that I would have been informed if it was positive, and it had just been a long shot, whereby I had been grabbing at straws. I remember the day my GP phoned me, very clearly. I was still feeling awful. “You have hit the jack pot. You have Lyme disease!” The microbiologist had phoned him up to tell him and recommended two weeks of doxycycline. The prescription would be ready for me to collect at the surgery. At the time, I knew very little about lyme, and was hugely relieved that what I had sounded more treatable than rheumatoid arthritis. At that point, I was unaware of the complexities of treating late stage Lyme.
I began the antibiotics immediately. The next day I felt so ill I thought I was dying. All my symptoms were worse. I felt as if the back of my head was exploding. That night, I became almost unable to find the words to speak, and my whole body felt tender. No position in bed was comfortable. My left thigh muscle started to spasm involuntarily and I became disorientated. My husband was so worried he called the out of hours GP. He called me back about 2 am. I remember not being able to remember the word lyme or what was wrong with me! My husband had to take the phone to explain. When he heard I had Lyme, he said “Oh, Lyme. Just keep an eye on it”. That was all. I do not know how I got through the next few days, as I felt so ill I wondered if I would pull through. At that point, I discovered Lyme Disease Action, and I emailed them for help and advice. They were a total lifeline. They have a very informative web site, which answers many questions about Lyme. I was able to get clear and sensible information and practical advice. The fact that I had become worse with antibiotics was likely to have been due to a herxheimer reaction. This was news to me, as I had never heard of a herxheimer reaction. I was able to discover that this is a short lived reaction to endotoxin-like products released by the death of harmful spirochete bacteria ( in my case borreliosis ),during or at the start of antibiotic treatment. It was helpful to know this, as it explained why I initially felt even worse. In referring to The BNF guidelines for Lyme, recommendation is made for a four week course of doxycycline in cases where there is possible arthritic involvement. I was able to go back to my GP with this information, and ask for a further two weeks of doxyclyine.
Over the next few weeks, there was a gradual but only partial improvement. Evenings were worse, and sometimes I would feel so unwell that I could barely form a sentence or stand at the cooker by about 8 pm. However, my elbows, knees and ribs were less sore, and the pain at the back of my head was diminishing. Throughout the whole time, I was always filled with a grim determination that I would get better no matter what. Looking back, maybe I was a little obsessive about this, but from where I stand now, fifteen months down the line, I think this attitude helped me. I made it my business to do everything in my power to claw back good health. I went to see a nutritionist, who had some experience with Lyme. I gave up wheat, diary, and sugar. I did green juicing and took a shed load of supplements, recommended by the nutritionist. I also made it my business to thoroughly inform myself about lyme and any treatments out there, as by now, it seemed obvious to me that I was dealing with later stage Lyme. In hind sight, I probably over googled things, as I felt a desperate sense of wanting to know what was out there to help, but equally, I am not sure it did me good reading about all the possible complications that can occur, and some of the horror stories. There is a fine balance! My on line searches revealed that there was a private lyme clinic in Winchester, headed by Dr Dryden, a consultant microbiologist. I need a referral from my GP to get seen. There was quite a wait, as the clinic was very busy, so I did not get an appointment until October, which was four months after my initial diagnosis. It was well worth the wait. A second blood test, taken at the clinic, was positive to Lyme. I understand I was lucky that both tests showed as positive, as many people struggle to get a positive diagnosis, despite their symptoms. I saw a wonderful doctor there. She really listened, and above all, totally understood my symptoms with empathy and an in depth knowledge of Lyme. It was such a relief to find someone who really understood and knew her subject. I was prescribed a five month course of azithromycin and doxycycline, and went back for two further appointments for review, during that time. Sadly, the clinic closed down not long after, so I consider myself very lucky to have been treated there.
While taking the antibiotics, I was also exploring a holistic health approach. I was seeing an excellent herbalist from Frampton on Severn with experience of Lyme. I was also taking the full “Stephen Buhner lyme herbal protocol”, as I had read his inspiring book on healing lyme, and his approach very much made sense to me. Some of the herbs were quite difficult to source, and required some perseverance to find, but my herbalist helped with this. I stayed on the full Buhner protocol for nine months. I bought an infrared sauna and had our hall cupboard ripped out to accommodate it. Although I am unaware of scientific evidence supporting the benefits of infrared saunas, there are certainly plenty of people with lyme out there, extolling the benefits. For me, it seemed logical that by increasing circulation, there would be greater potential for good antibiotic penetration into the tissues, particularly as lyme tends to seek out nice cosy hiding places. I also liked the idea of detoxing my body and sweating. Above all, the sauna became a place that I could go to when I felt shivery or unwell. It was a warm haven of gentle, enveloping, comforting heat. I knew that there was a place I could go to each day, where my symptoms would ebb away and I would feel the glorious warmth surrounding me. I found it also helped when my elbows and knees were sore.
So, in June 2016, almost a year after first becoming ill, I was considerably better, but not fully. I was having periods of feeling well, and my knees and elbows were no longer painful. I was cycling every day and going to weekly pilates. I had discovered the benefits of cold water dips, and was swimming in a deep water pool at a nearby river, most days. This was something that gave me an incredible sense of wellbeing, and I intuitively felt it was of benefit. I still did not feel I had the stamina or inclination to return to nursing, so had set up a small business working from home in on line sales. This gave me the flexibility to work when I felt good, but lye of floor for a few minutes if I was feeling below par.
Over last four years, I had had intermittent episodes of rawness in the right side of my wind pipe, coupled with shortness of breath on climbing the stairs and feeling as if I were breathing through fog. After lung function tests, which were normal, my GP had given me inhalers to take. The practice nurse thought these symptoms were secondary to leaf mould or pollen. The episodes usually lasted for a few weeks, and then disappeared, only to return a few weeks later. However, recently, this had become more persistent and bothersome. There were still some periods when I would feel an overwhelming sense of “whole body/mind “malaise. This feeling is hard to describe, and other fellow lyme sufferers may have an understanding of what I mean. Sometimes, I would just let the tears flow, as I just felt overwhelmed by feeling this trough of malaise, and would just give in to it. These episodes always passed, but were tough.
I still felt that there needed to be another chapter in my healing journey, and I was determined to leave no stone unturned in my efforts to maximize a return to good health. I had met some other people with lyme, both at conferences I had attended and through an on line support group. It was evident that some of them were visiting clinics outside the UK, and were reporting significant improvements and benefits. After research and consideration, I decided upon a visit to the BCA clinic in Germany, and visited it in June 2015. Some of the blood tests I had are ones that are not available back home. I was tested for an array of co infections, alongside borellia. The results showed that lyme was still present, as was chlamydia pneumonaie, Epstein Barr and a few other anomalies. The doctor I saw recommended a three month course of herbal supplements and treatments. I returned to England with a shed load of capsules to take. I was to have my blood re tested after three months and then return to the clinic for review. Over the next three months, there was a definite improvement. I continued to eat an extremely healthy diet, avoiding wheat, all sugar and most dairy products. However, I wanted to still enjoy life, and so allowed myself a latte as a treat and an occasional glass of red wine (when off antibiotics only). I probably adopted a super healthy lifestyle 90% of the time, but if I was meeting friends for a meal out, I allowed myself to be flexible and relax the rules a little. By now, tenderness in my knees, ribs and elbows had virtually vanished, and I was cycling up to ten miles, several times a week, and dipping in the cold river pool regularly. My energy levels were pretty good. The main residual symptom was the persistent rawness in my chest, along with difficulty multi-tasking and having a lower threshold to too much going on in my life.
My return visit to the BCA clinic was at the end of September 2016. This time, my CD57 count (As I understand it, a marker for progression of lyme ), had improved considerably, but the lyme and chlamydia levels were slightly higher. The doctor said that this was a common occurrence, as when these hard to reach bacteria start to be forced out of their hiding places, the blood levels can rise again, so not a bad sign. I was keen to do whatever it would take to tackle the remaining bacteria. It was decided that a further three months of a slightly revised herbal regime, coupled with eight weeks of clarithromycin, adding in rifampicin for the last five weeks, would be best choice for me. So, armed with yet more capsules, I returned to England.
I have now completed this protocol and definitely feeling a further improvement. I had another appointment with the doctor from BCA clinic. A further blood test had suggested that both the lyme and chlamydia pneumonaie count were now “borderline” only. I was prescribed a further three months of the herbal protocol ( Make Distribution).
I am optimistic that I am now well on way to good health. However, with late stage lyme, there are no assurances or promises, and I take nothing for granted. I still have some days when I feel below par. I am extremely grateful for the good periods, and will continue to look after my health well for the rest of my life. Sometimes all my muscles and joints hurt, and I feel below par, but if I hang on in there, these tend to pass.
My journey with lyme has been arduous and rocky. However, it has not been without its silver lining. It has caused me to stop and take stock of my life in a way I would probably never have got around to doing. It has given me a deep appreciation of everything, and humbled me to the suffering of others, even more than my nursing career ever did. I appreciate the small things more than ever before. Some of you reading this may be at the start of a lyme journey, and some, may be feeling despair, as I did. For what it is worth, the following things really helped me.
- Inform yourself about the facts of lyme, but avoid too much information about other people’s negative experiences. Many people do get better, and these people are getting on with their lives. The internet has some horror stories out there, but you need to try to stay positive if you can.
- However bad you feel, be aware that things can look very different in the morning, and can get out of proportion when one is tired, especially in the evening.
- Mindfulness helped me, as with lyme, it is easy to think of all the things that could go wrong. Staying present reduces this. I also find a daily period of meditation, in whatever form works for you, has been of immense help.
- Hot and cold packs in a Velcro pouch, available on amazon, have been of great help to me. I keep two in freezer and two next to the microwave. They are amazingly comforting for any aches or pains- They can be put in the Velcro bandage pouch and wrapped around the affected part- knees, elbows, back of head or neck, lower back. I either alternate with hot and cold packs or sometimes use one or the other, depending on the type of discomfort. While my knees were sore, they were a complete life saver.
- Infrared saunas have given me great symptom relief, but if not available, a sauna at local leisure centre can also be very helpful, although the infrared is more gentle and easier to tolerate. When I was at my worst, and before I got the sauna, hot baths were my absolute saviour, and the bath was the one place I had some reprieve from the malaise.