For a bit of background, I thought I'd add my "story" here.
How it all started
2005
I was 22 and on a postgraduate course at uni when I got ill. I had been staying with my parents in Florida for Christmas and New Year and when I flew back home to Edinburgh in January 2005 and I became ill with what was probably some sort of viral infection. I had flu-like symptoms, sore throat, headaches, congestion, aches and pains and fatigue. I thought I had a bad cold coupled with jet-lag and tried to push through it. Eventually after a couple of weeks trying to fight it I gave in and went to bed for a few days. I felt so much better for doing that but whenever I got up the overwhelming fatigue and severe headaches set in. At this point my parents were back in Scotland and my Mum (a pharmacist) told me about "post viral fatigue syndrome" and said my body might just take a bit longer to get over the viral infection. My first visit to my doctor's surgery was to get a doctor's certificate so I could get an extension on an essay that was due in at uni. The doctor also mentioned PVFS and said it would "usually pass in a few weeks".
I was in the second semester of my MSc and had a lot of work to do. Every time I opened a book and tried to get some work done I would fall asleep, I couldn't concentrate and my headaches were horrendous. Sometimes I was afraid to fall asleep at night for fear my head might explode while I was asleep (I'm not really sure how being awake would have prevented this, but it wasn't an entirely rational fear...). Clearly my head never did explode, but the headaches did not go away. I constantly felt like I had full-blown 'flu and the world's worst hangover combined, my social life disappeared and I spent most of the day in bed. I managed to make it into some afternoon classes at uni, usually only for an hour or two at a time and someone had to drive me there and pick me up. My Mum stayed with me in Edinburgh to look after me while my Dad went back to Florida. I could not have survived without her.
By summer 2005 I had not improved at all and I decided to suspend my planned PhD and applied for a visa that would let me stay in the USA with my parents for a while. The plan at that time was to take a year out to recover and then go back to uni. It didn't quite work out that way.
I did manage to complete (and pass) my MSc which looking back was a major achievement for me at that time. At the time, however, I was not happy with my work and my grades - when I wrote my dissertation I had so little mental energy that I could not read what I had written the day before and then add to it as reading used up all the energy I had for that day. It was so disjointed and not the standard of work I wanted to produce, but I was determined to do it and ultimately I did. And thankfully, I passed.
Did this really happen to me?
2005-2006
The rest of 2005 and 2006 seem like a surreal blur to me now. When I look back and think about how ill I was at that time it doesn't seem like it really happened to me. I had days where I couldn't get out of bed; where I had to cling on to the walls just to make it to the bathroom. When I could get up, I slid downstairs on my bum and was either helped or carried back up to bed. I had a straw (a purple Bratz dolls straw!) because I could hardly lift a glass to drink. When I felt well enough to go out we could only go places that had wheelchairs because I could not walk. It was hard to read, noise was unbearable and my concentration and mental energy were almost non-existent. My headaches continued to be my worst symptom along with pains in my legs and the unrelenting, debilitating fatigue.
When energy levels are that low and fatigue is all consuming, there is not a word to describe it. The best we have is "tired"... "how are you feeling?"...."I'm tired".... there is no other response and tired is just not sufficient. It was impossible to describe to people how I felt. The only ones who really saw it were my parents, who saw me every day and went through it all with me. On the occasion that I did manage to go out, it was planned days in advance so that I had days to rest beforehand and days to recover afterwards. My Mum would wash my hair in the sink for me the day before and dry it for me as I couldn't lift the hairdryer. I couldn't go out without my makeup on because when I looked in the mirror without it I didn't look like me. With my hair done, my makeup on and clothes on (as opposed to the PJs I lived in) I didn't look ill. I really was suffering from an invisible illness and that is what makes Lyme so difficult to understand - both for sufferers, our families, and other people. Of course, at that time I still didn't know anything about Lyme disease.
A little bit about CFS
My official "diagnosis" was chronic fatigue syndrome (CFS) otherwise known as ME (myalgic encephalomyelitis) which is really what PVFS becomes when you've had it longer than 6 months. All medical tests came back clear, there was no suggestion of any other (read: understood; treatable) condition which just kind of defaults the results to CFS. There is no recommended treatment for CFS and the best my doctor could offer me were painkillers and - I quote - "a support group". Imagine them actually offering any other patient that..."I'm sorry to tell you that you have MS/ cancer/ pneumonia etc. I can recommend a support group...." It's ridiculous. I did not take my doctor up on this offer.
The controversy with CFS/ ME stems from the medical community's lack of knowledge and understanding of the issue. When they don't understand something, it is deemed psychosomatic.... in other words, you're making it up. In the middle of the 20th century both MS and Parkinson's were thought to be psychosomatic. It's a shame they can't learn from their previous mistakes. In saying that, my own GP never suggested he didn't believe me or he thought I was making it up, but he had nothing more to offer me.
Finding answers and self-experimentation
2007
I was determined to find a solution myself. In the times that I was able to read I searched for journal articles about CFS. I was sure that I would find some sort of new treatment that was being researched and this would lead me to answers. It took some time, but eventually this did happen. It was actually my Mum who came across the Marshall Protocol website in early 2007. The MP itself is controversial and I did not follow that protocol, but the science behind it was what led me to my answers.
It presented the idea that many autoimmune diseases (they were including CFS here) may be caused by a specific type of bacteria which can mutate and hide from the immune system. After struggling to learn microbiology in my foggy cognitive state, I decided that this was the most feasible theory I had come across. It made perfect sense to me - I had got ill after an infection and had never recovered, surely it made sense to think that I might still have an infection...? It's amazing that idea is actually considered revolutionary. Buoyed by the idea that I might actually have found something to help me I began researching. I found several articles that had found evidence of infection in CFS patients. I learned that it was not necessarily the specific types of bacteria that caused specific symptoms, but that the more overwhelming the infective load, the more severe the symptoms. Again, this made sense. I also learned that once the immune system is "defeated" by one strain, it is likely that multiple infections will follow. This explains why lots of research finds statistically significant results in CFS groups when testing for X bacterium/virus/ parasite but cannot pinpoint ONE cause.
One of the most important things I learned about at this time was Jarisch-Herxheimer reactions. These are also known as "die off" and occur when the bacteria in the body are killed and release toxins faster than the body can eliminate them. The "Herx" reaction - as it is known - is a sign that these bacteria are present and that treatment is effective. They cause an increase in symptoms and can be very serious if they are not controlled, therefore killing the bacteria has to be done incrementally. If it was possible to kill all the bacteria that has invaded the body at once, the toxins released would cause severe reactions. Herx reactions include (but are not limited to) increased headches, aches and pains, nausea and vomiting, dizziness, fatigue, low energy levels, increased heart rate, difficulty breathing, sweating, fever... the list goes on.
Reading about these was really a eureka moment for me as I had actually experienced these a few months earlier but not known what they were. A nutritionist had recommended a supplement called allicin (derived from garlic - a known natural antibacterial) which she said would help boost my immune system. I took it for a couple of weeks but during this time I had terrible nausea, migraines and severe headaches. At that time we came to the conclusion that something in the supplement didn't agree with me and when I stopped it the symptoms all stopped.
I guess it seems that I should have been seeing a doctor about all this, with all these ideas to present, but it really didn't seem like an option at the time. This was new research, it had not been proved; a lot of it was controversial and the recommended treatment was indefinite use of antibiotics which most doctors would not recommend. Based on my experience up to that point, I had no faith in the medical community. I became my own guinea pig.
I researched natural antibiotics/ antibacterials/ antimicrobials and put together my own regime, based on various websites, recommendations and journal articles. At this time it was still very difficult for me to read and to concentrate and this research took me over a month. I jotted down little snippets of information and wrote the names of herbs and supplements to consider. The really important ones I put a star at - I could not remember the next day what was so important about them, but the star told me I had a thought at some point.
In February 2007 I started on my "protocol". I was also taking lots of antioxidants and purifying supplements that were thought to help with the herx reactions. There is evidence of oxidative stress in CFS, so it was recommended (somewhere) to build up levels of antioxidants in the body, these were also thought to help with the elimination of toxins. My real experiment was the allicin. I had read studies that had shown allicin to have antibiotic properties, and in fact it has been shown to be effective against MRSA. If my theory was correct, the allicin would make me herx again and then eventually these would ease off as my body coped with eliminating these toxins. If I increased the allicin dose, the herx would return. If this happened, it was highly likely that I was killing off an overload of bacteria in my body. It did happen.
Between February and June 2007 I improved immensely. I was able to walk again - very slowly, sometimes with support and only a little at a time, but I did not require a wheelchair for a short trip to the mall. I was also able to stand up in the shower again and to wash my hair on my own. Often, that was my only activity for the day, it still used up the majority of my energy, but these were big steps. I was excited.
Learning about Lyme disease
2008
I continued to improve in 2007 and in 2008 I decided to return to uni to take up my PhD. The real reason for this was that I had suspending my ESRC funding for as long as possible and if I didn't try then I would lose it. Looking back, I really was not well enough to return but I seemed to have made so much progress that I thought I could manage it and keep improving. My perspective was altered. Real life requires a lot more energy than being in the house most of the day. I survived (barely) on cans of red bull, anti-nausea tablets and energy bars. I was so nauseated all the time that I couldn't eat. I was running an experiment and managed a couple of hours every other afternoon in uni; after that I would return home, collapse on the sofa and have no energy left to make dinner. It was not good for me and ultimately it undid a lot of the progress I had made the previous year.
In May 2008 I officially gave up my PhD and my funding. This was a really hard decision for me in one way, but in another way I didn't even have a choice. Without my health I had nothing, and it was important to recognise that. In summer 2008 I went back to Florida with my Mum (who had had to come back to Edinburgh to look after me again) to focus all my energy on recovering.
It was during my time at home in 2008 that I came across information on Lyme disease. I couldn't believe that I hadn't read this info before, I ticked all the boxes, it all made sense. I didn't remember having a tick bite, but I had spent a few summers in New Hampshire, USA working at a summer camp and Lyme disease is very common in that area. I learned that not everyone gets the "classic" bulls eye rash that is indicative of Lyme; not everyone finds a tick or a tick bite; not everyone gets ill right away - sometimes another illness kick-starts the Lyme and while the immune system is weakened by that infection, the Lyme infection takes over.
I also learned that getting a Lyme diagnosis - especially at the stage I was at - was very difficult. Lyme tests are not reliable, there are lots of false-negative results; some people don't produce the antibodies they test for, or only produce them within a certain time period. I also learned that in the UK NICE (National Institute of Clinical Excellence) which provides guidelines on treating illnesses, specifically recommends against testing for Lyme in CFS patients. Despite this, I managed to get my doctor's surgery to test me. It came back negative, which is really what I was expecting. The people who get positive blood tests are really the lucky ones.
Eventually, I found a doctor in England who was testing for Lyme by looking at blood cultures using dark field microscopy. Basically - as I understand it - this means just looking to see what's in the blood rather than testing for x,y,z, and possibly missing a,b,c as conventional testing tends to do.
This doctor found Lyme bacteria in my blood and also a parasite which is thought to affect immune function and which has also been linked to CFS symptoms. It is possible that the parasite (cryptostrongylus pulmonii) disrupts the Th1 pathway (an immune response) which then makes it more likely that you will catch an infection and not be able to fight it effectively.
I was prescribed an anti-parasitic, which was a 6 month treatment course, for the parasite and a herbal treatment called Samento which is thought to target the Lyme bacteria in all its forms. I had shown a larger than expected amount of cystic Lyme which is harder to kill than the spirochete form of the bacterium. Lyme mutates into the cystic form when it is "attacked" by antibiotics so we thought that the allicin was having that effect. This is all pretty hypothetical however, not much is really understood about the Lyme bacterium and it is not known for certain that Samento will definitely kill the cystic form, or that all antibiotics definitely do not.
This - of course - led me to research Lyme disease. By this point, although my physical energy was still very low and fatigue levels were still debilitating, my mental energy had improved a lot and reading and researching was much easier for me. I read as much as I could about Lyme disease. I think I will put that in a separate section, as this is already very long and is about to get longer!
Visa problems
In among all this, I was having problems with my US visa. Technically I had a visitors' visa that was valid for 10 years and allowed me to stay in the US for 6 months at a time. Over the past few years I'd spend some time at home and made sure I left the US every 6 months and I thought that was ok because I had never been told otherwise. After a trip home in late 2008, I flew into Newark airport and was taken away into an office at immigration where the immigration officer questioned me about the amount of time I'd spent in the US. He called my Mum (to verify my story I think) and told her that he "very well might just put her on a plane straight back to the UK". Although I had improved a lot, I still had to use a wheelchair at airports as the long walks, standing in long queues and carrying bags was too much for me on my own. So I was sitting in a wheelchair, trying my very hardest not to cry and to explain exactly why I was there. Luckily I always carried doctors' letters and other "supporting evidence" when I travelled in case I did encounter any questions about my visa (although I had never expected this!). Eventually the officer and his supervisor - after looking over all my documentation, and making copies of everything - allowed me in to the country. It was 2 hours between the immigration officer phoning my Mum and me calling her to say they had let me in and I was at the gate waiting for my connecting flight. I was very upset and sobbing down the phone when a man sitting across from me got up, went to a cafe and brought me napkins. This just made me cry even more! It was pretty traumatising and it also meant I had to make other plans for the future as they told me I would need to spend more time in the UK than the US before I would be allowed in again. I had until April 2009 - the date the stamped on my passport - to make plans.
Initially the immigration officer did not believe that I could not get treatment for Lyme in the UK. He dismissed the idea (brutally) saying that the UK has "some of the best doctors in the world" and "don't give me this rubbish about Lyme disease" (maybe here didn't say "rubbish" since he was American, but that was the gist). He should have been right. As one of the most developed and richest (well, we used to be) countries in the world, why does the UK not offer comprehensive treatment and information for Lyme disease? I don't know the answer to that. Officially, Lyme disease is considered a rare disease, not common in the UK but emerging information suggests otherwise. I'm sure I will have lots more to say on this at a later date...
The US is not without its controversies regarding Lyme disease treatment - in fact most of the controversies stem from the US, but because it is such a pervasive problem, there are doctors who have recognised this and are working hard on behalf of Lyme patients.
The turning point
2009
A fortunate turn of events saw my Dad start a new job in Pennsylvania in early 2009 and my parents (with me in tow) moving there from Florida. This was the best thing that could have happened for me. Lyme disease is very common in PA. Everyone knows about it. Everyone knows someone who has had it, if they haven't had it themselves.
A colleague of my Dad's recommended a doctor specialising in tick-borne diseases. She also recommended an immigration lawyer. This was really a turning point for me. Finding the information was the beginning, and getting a diagnosis was helpful, but finding a true specialist with years of experience in treating Lyme was the turning point. And the immigration lawyer was extremely helpful too. I saw Dr S in April 2009 and he said he believed he could help me and that he personally believes that you can beat Lyme, it just takes time and perseverance, but he has seen it happen. He said he could treat me. And he didn't charge me a fortune, which was very helpful as I don't have health insurance, not being American, my travel insurance doesn't cover existing conditions, and I couldn't afford extortionate medical payments. (I have heard of an American doctor who travels to London to treat patients in the UK and charges £1500 per appointment, not including medications.)
I still had one more hurdle before I could begin proper treatment though. We had planned a trip back to the UK because I had to leave the US. Initially, the immigration lawyer advised me not to leave and to apply for a change of status from within the country. This was only a few days before we were due to leave. I was looking forward to a friend's wedding, catching up with my friends and family and was ready for the trip home. We decided to go ahead with the trip, but the lawyer prepared documentation to prove that I was receiving medical treatment in the US for when we returned. This was valid on the same visa that I had, but for some reason made a difference in that it should allow me to return sooner.
Nothing was guaranteed though and when we flew into NYC in July there was every chance I might be sent straight back home. It was nerve-wracking, but the risk was worth it. I wanted to get proper treatment. The immigration officer couldn't have been nicer. He asked if I was in the country for medical treatment, didn't even ask to see all my documentation and then asked if it would be helpful if he let me stay for a year. I could have kissed the man. It was such a relief, I was so happy and it really seemed as though things were finally coming together and I was heading in the right direction.
I started antibiotics in July 2009. I continued to take a lot of the herbs and supplements I was already taking and Dr S said that he always advised people that when they found something that helped them, to stick with it. Everything I asked him he had heard about before, he was very straightforward and said that no-one has all the answers to Lyme. It was so refreshing to speak to a doctor who was honest, who actually understood what I was talking about (when I first mentioned Lyme to my GP in Scotland he said he didn't know if you could treat Lyme with antibiotics and looked it up in a book). In short, it was great to have a doctor who knew more than me about my illness - isn't that the way it is supposed to be?!
At the same time, because he was so honest, it meant I didn't have all the answers I wanted. Mainly because they don't exist. No-one can put a timeline on treatment because it depends on the individual infection load, the function of the immune system, co-infections that might be present, and much much more. For the first few months I went into my appointments with pages of information and questions and Dr S patiently answered them all for me. Just visiting him was so reassuring and helpful for me. Even when I had really bad symptoms or herx reactions, he was not fazed by them, he had seen it all before. Strangely, this was also really reassuring for me. If he didn't think I was going to keel over then I could stop worrying about it too.
My first antibiotic was doxycycline, generally the first antibiotic of choice for Lyme. On top of the herx reactions (which were pretty horrid) doxy also causes nausea, sickness and stomach problems all on its own. I did manage to build up the dose until I was on a pretty high dose - this involved taking it every 6 hours, which meant I had a dose in the middle of the night; I couldn't take it on an empty stomach and I also wasn't allowed dairy at the same time as the doxy so I set an alarm for 6am, ate a couple of rice cakes, took the doxy and stayed sitting up for 20 minutes so it didn't burn a hole in my esophagus and then went back to sleep. It's amazing what can become a habit. I managed 6 months on the doxy before it wrecked my stomach and started making me vomit. I had a lot of improvement in that time, although by normal standards, I was still ill and not able to lead a "normal" life. Dr S recommended a break from abx for a while to let my stomach recover.
At this point I had lost a lot of weight because of the nausea which seemed to get worse when I ate, even if I felt hungry. I survived on soup and smoothies because chewing seemed to make the nausea even worse. It was difficult to get clothes to fit me and I actually fit into age 14 abercrombie kids clothes! At least I could shop somewhere...
Continued progress
2010
In early 2010, while on my abx break I started doing some research again. I thought that I should be seeing more improvement than I was and I was looking for something to help that along. Some reading took me back to the cryptostrogylus pulmonii infection, the theory being that if the antiparasitic hadn't got rid of the infection then my immune system would still not be operating at its best. I started a herbal parasite cleanse - 2 HUGE capsules twice a day for a month - in the hope that might help.
This is where it got a bit disgusting, so I'll not go into too much detail. C. pulmonii literally means "hidden lungworm", not the type of worm you instantly think of, but a type of nematode that is thought to live in the lungs. A recent Harvard study had found it in a very high percentage of CFS patients and there seemed to be more info available than the last time I'd looked. All the reviews and info about the parasitic cleanse gave details about what you would expect from any kind of cleanse - mostly info about bowel movements and what you might expect to "find" while on the herbal cleanse. I was a little apprehensive (some people post really disgusting photos online) but all my reading suggested it was worth a try. I was not expecting what happened next. About a week into the cleanse I started coughing up bloody sputum and blowing a lot of bloody stuff out of my nose. Apparently this meant my lungs were cleansing. This totally surprised me - was I actually coughing up dead parasites from my lungs? Yuck. However disgusting this was, it was an encouraging turn of events and kind of gave more support to my hypothesis (which even Dr S had said was viable).
After a month of the herbal cleanse I went back on the doxy, lasted a week before it made me sick again so gave up on that and Dr S changed me to another antibiotic, erythromycin. Over the next few months I made really good progress. Whether this was due to getting rid of the parasite or not, I will never know for sure (like many things associated with this illness), but the pattern fit. Changing to a different abx also may have made a difference in targeting the Lyme.
Towards the end of 2010 I was doing really well. I was still sleeping long hours (and still suffering from insomnia, one of the cruel paradoxes of Lyme) but my nausea had virtually gone, I'd put on about 15 pounds - my skinny clothes were too small! - and my headaches were greatly improved. I even managed a few yoga classes towards the end of the year - the first exercise I had done in almost 6 years.
The beginning of the end
2011
Right at the end of 2010 everything seemed to nosedive again. My sleep stopped being refreshing, my headaches came back, I had horrendous migraines, my leg pain was back, I was sweating constantly - all herx symptoms but I had not changed any herbal or conventional abx doses. At my first 2011 appointment with Dr S he seemed to think this is all a good thing. He said he sees a flare up of old symptoms in people getting to the end of their treatment, again he doesn't know why (although I'm sure he has a theory) but he said he sees it a lot. He actually went as far as to say to me he would be "very surprised" if I am not "feeling great" by September (when I plan to go back to uni). Everything he says is very measured and he has never promised anything, or made any statement like that before so if all things continue to progress as they are, I trust his experience.
So that brings me up-to-date (March 2011). A few weeks ago I decided to megadose with Samento for a week and see if I can hurry this "end part" along a bit. I have accepted my PhD place in September, I have been granted a visa extension until July and I plan to return to my life then. Even at the moment I could manage that but it would be a lot of effort for me and I would need to be careful. I would rather be better - obviously, I'd rather be 100% - when I go back. The high Samento dose has produced some of those wonderful herx reactions although the worst has been insomnia which makes it difficult to judge how everything else is really progressing because I feel so tired from not sleeping. After 1 week of mega-Samento and 1 week off it I started to feel really good again. So (even although it amounts to self-torture) last week I did another mega-Samento week and am just starting my week off it. If the pattern continues I will feel even better next week. Fingers crossed.
Having thought about it a lot over the last few weeks, I think that the reason my herx got worse at the end of last year might have been my immune system kicking in full force. I have read that at some point, the infection load is reduced and the immune system is able to function more efficiently, so my hypothesis here is that I now have both the abx and my immune system fighting at full strength which is why I had increased herx. Again, I will never know, but - again - it fits the pattern.
Ideally Dr S would like me to be off the antibiotics by the summer, but I do not realistically know if that will happen. I would rather stay on them and have to deal with the effects of those than have to deal with the Lyme getting some fresh energy if it's not totally stamped out. At the moment, I just have to wait and see and hope that things continue to progress at the rate they are doing just now.
Out of the lyme light
While I would never have chosen to have this happen to me, I do believe that it has had a huge influence on me in many positive ways. I have learned to value health, in a way most people do not until they are much older. I will never take my health for granted. I have proved to myself that I can cope with whatever is thrown at me, this has made me a strong person - and yes, of course there have been times where I have broken down and cried and felt beaten and hopeless, but I have learned that is important to accept those feelings, deal with them, and then move on. There is no point in moaning and complaining all the time as these things don't change anything. The only way to make changes is to take control of the situation, choose to see the good things and to move on with the support of those around you.
The title of this blog "out of the lyme light" refers to so many things - my journey out of the illness, but also the development of my personality, knowledge, and my strengths as influenced by this journey because they really have emerged because of Lyme disease.
I cannot find the author of this quote, but it seems like a good place to finish:
"Just when the caterpillar thought life was over, she became a butterfly."
