My story

Short version: I live with Myalgic Encephalomyelitis (M.E.), and have tested positive for Borrelia burgdorferi (Lyme disease), Bartonella quintana, Bartonella henselae, and Mycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. Although I finished treatment for bartonellosis in January 2012, the disease is prone to relapse, and a year and a half later, it did. All of these conditions are progressive, but in 2013 I made the choice to forego all treatment in favour of living my life while I am still here to do it. In October 2014 I began non-invasive intravenous immunoglobulin therapy (IVIG) in my home, in hopes of slowing things down.

I was bedbound when I created this journal, but I eventually upgraded to housebound. As of now, I would consider myself partially-housebound. I still use a wheelchair for long trips, cannot drive, and need help preparing meals, but considering the outrageous combination of illnesses with which I’m dealing, I think that to be quite blessed. This blog started as my health diary to track symptoms, but gradually changed into my place to talk about all things related to the life of someone disabled by severe chronic illness, especially through the lens of mindfulness and acceptance.

So hi, I’m Kit. I’m an Optimistic realist, Writer, Artist, Universalist, Buddhist, and Spoonie. Welcome to my site, where I always look for the colours in the darkness.

Below you can find an account of how I came to acquire all these diseases, if you are inclined. Thank you for reading, and please don’t be a stranger! I welcome all comments.


last updated December 2014

I was never a healthy child.

Recent research into my medical history would point to me having had PANDAS. I’ve had OCD since at least five-years-old, Tourette’s Syndrome and Migraine since equally young ages, and was born with Primary Immunodeficiency Disease (PIDD) in the form of IgG subclass deficiencies.

But the majority of my problems began almost immediately after getting a Hepatitis B vaccination in early 2000; it was preservative free. I now know that over 56% of people who get M.E. post-vaccination, get it after a Hepatitis B inoculation (ME Association Survey Results, 2010). During the next two years, I suffered from constant dizziness, constant nausea, and repeated infections, until in August 2002, I got “the” infection: The one that triggered the ME.

I remember it was a Friday, and around noon, when I began to feel unwell. The next two days passed with mild cold-like symptoms, and I figured by Monday I’d be back to normal. However, that didn’t happen. Monday morning arrived and I awoke with dizziness; I assumed my “cold” had given me a sinus infection. But several rounds of various antibiotics did nothing for me, and I showed a temperature of 96.7, as is custom for severe viral infections. Eventually my initial “cold” symptoms started to fade, but what began to emerge were new symptoms that refused to subside. The classic muscle weakness that accompanies M.E. began within weeks, and has stayed with me ever since. Later, I began having terrible muscle pain and showing all the signs of fibromyalgia, a crippling pain syndrome brought on by trauma to the nervous system (such as an infection, car crash, or the onset of another disease).

I saw numerous specialists and tested negative — often twice — for everything as serious as Addison’s and simple as Allergies. A trial run with a steroid injection gave me immeasurable relief from the inflammation that was wrecking my body…until it wore off. Within four months of that fateful infection in August 2002, I was diagnosed with “Chronic Fatigue and Immune Dysfunction Syndrome,” or CFIDS, now commonly known as CFS. A month after that, a rheumatologist diagnosed with me Fibromyalgia Syndrome (FMS, or FM). The advice? There is no cure, nor treatment, but you’ll be fine.

I was unable to leave my house except for doctor visits and the occasional visit to a friend, for the next three years. Once the disability applications were started, I was eventually “validated” by being granted disability payments, after a two-year fight. Like most, I was denied at first. However, on the day of my hearing, I collapsed outside their elevator, and couldn’t continue talking to the judge after I made it into the room. I suppose that’s “good evidence” when you’re trying to explain why your sickness limits every aspect of your life?

 

I could never adequately describe the types of symptoms I experienced.

I suppose it could be lightly compared to having the worst flu of your life, and to your absolute horror, it only gets worse. You lose the ability to sleep normally, eat normally, to move without feeling like your muscles are being torn from your limbs; your cognitive abilities — thinking, processing, memory — become extremely dysfunctional; to carry items weighing even a couple pounds becomes impossible; you are out of breath with even the most minor of exertions; the dizziness is overwhelming, and you walk as if intoxicated; dysautonomia immediately settles in, and your body cannot properly respond to any type of environmental change, be it temperature, or even just standing up; anything you do — whether it is thinking, being exposed to light/sound/smells, or walking — causes an exacerbation or “flare up” of all your symptoms, that lasts days, and initially takes 24-48 hours to affect you; the crux of the disease, the muscle weakness, is activity-induced, substantial, and takes days to weeks or even longer to recover from; by the time you are flaring, you’ve already forgotten what it was that you did to cause it; you experience episodes of both muscular and neurological-based transient paralysis; signals connecting your brain and muscles temporarily disappear; you suddenly need to take fractions of any medication affecting the nervous system, or risk being “knocked out” for 16+ hours because gene alterations triggered by the disease affect how your body processes medications. The list could go on, to an unimaginable degree.

But perhaps worst of all, besides the fact that these jump at you within a matter of weeks, is that No one believes there is anything wrong with you. The tests that everyone runs, show nothing; the tests that would show something, no one runs. Because I had this “CFS” label, the only things the various “specialists” knew how to recommend were psychological counseling, antidepressants, and exercise. These recommendations are still the Top Three on the CDC’s website for Chronic Fatigue Syndrome. They insisted I exercise — running, biking, swimming — and stop exaggerating my “fatigue”; had I listened to them, I may have ended up even worse than I have now. I did not have the language to describe that what I felt was so much more than “fatigue.” It is a very delicate balance when dealing with one illness that is made worse by exercise (M.E.), and another such as Fibromyalgia, for which exercise is absolutely crucial.

After about three years of this living hell, something that happens to many M.E. sufferers happened to me: I began to go into spontaneous remission. Over the course of the next year, most of my M.E.-related symptoms gradually went away, leaving me “only the Fibromyalgia” to deal with, and by August 2006 — four years after the onset of the M.E. — I was officially in remission. I went back to school, even if it required many accomodations to suit the complications of having a chronic pain disorder. With the M.E. symptoms out of the way, I was able to walk much more, and exercise again, which helped with the Fibromyalgia.

Little did I know “something” had hitched a ride with me that summer, something I wouldn’t find out about until many years later…

 

During the first five months of classes, I contracted infections left and right.

I got a sinus infection, a bacterial ear infection, a cold, and a stomach virus. All of these made me feel atrocious, but they were not accompanied by the sensations of being near-death, immediate trips to the ER, and substantially-impaired ability to recover that happened while I was still experiencing full-blown ME. By January of 2007, I had already begun to relapse, and by the end of that month, I started having severe migratory-type pain that mainly affected my knees, ceasing my ability to walk on its worst days. It only lasted a few weeks, but confused me, because I had never experienced it before. This pain responded to anti-inflammatories, so it couldn’t have been fibromyalgia (which does not, since it is not an inflammatory condition). During the next few months, I began having excruitating headaches at an alarming frequency, fevers (which, at the time, I didn’t realize were repeating every four weeks), and extreme fatigue. I would later figure out these to be my first signs of having chronic, disseminated Lyme Disease, a far-too-common infection transmitted by ticks that spreads throughout the entire body when untreated.

Ten months after the M.E. had gone into remission, I contracted a viral ear infection that, without exaggeration, made me want to die. After that, I completely relapsed, and the M.E. returned full-force. Once again I was wrought with severe muscle weakness, dizziness, and what is known as “post-exerional malaise,” the (admittedly poor) term coined for our unreasonable flare + extended recovery period from even minor activity. Shortly after this event, I made the revelation that changed everything.

I found out the truth about “CFS” and M.E. Suddenly everything I had been through made so much sense: The illness onset, the course the disease had taken and how long each stage took to occur, the timing of my remission, why no one understood what I was talking about when I explained my unique symptoms, even the time of year I fell ill; I was a textbook case of this illness known as myalgic encephalomyelitis. Instead of researching “CFS” or “CFIDS,” I began researching M.E., and by doing so, got clarification for all the little things that never added up whenever I read about Chronic Fatigue Syndrome as it is defined by the CDC. They never added up because I didn’t have “chronic fatigue syndrome.”

Finally I knew I wasn’t crazy. Finally I knew that thousands of other people experienced exactly what I did, how I did, and I had an answer for why I had so little in common with other “CFS” patients. In addition, I also found out the history of both illnesses, including the political “drama,” if you will, that surrounds the international debate to call them either distinct entities or the same disease. Myalgic encephalomyelitis was the disease that had always existed, characterized predominately by muscle weakness and nervous system dysfunction; chronic fatigue syndrome was a title the government created for people with unexplained fatigue and other symptoms. Even the CDC acknowledged that they are distinct conditions. Thus it began to make much more sense about why CFS research was getting absolutely nowhere, and especially how anyone could possibly claim that exercise helped my disease: If one combines these two very different illnesses under the same umbrella, then studies them, research will not actually contain people with M.E., but instead include a mixed group of people having only the symptom of “chronic fatigue” in common. The results of such studies, therefore, are going to be terribly construed. (You can read more about how these conditions differ by visiting the links on the right side of this blog, and clicking here.)

New knowledge in hand, I was also finally able to find potential treatments that were actually relevant, which included the immediate addition of Coenzyme Q-10/CoQ10 to my daily regimen. This protects my muscles from damage, slows the appearance and progression of M.E.-related heart failure, protects against neurodegeneration, and is the one thing in my life that I cannot be without. (I use Vitaline brand–which is availabe under many product names–as this is the one that has been studied and proven to offer neuroprotective effects.)

 

I cannot recall the exact date that my Fibromyalgia disappeared, but gradually, after having the condition six years, I realized that I no longer suffered from its trademark symptoms.

I had no more chronic pain in all of my muscles and tendons; I no longer had IBS; and I no longer had trouble sleeping, or waking up 10-20 times per night. Imagine my surprise when I found out that this, too, is a very common occurence with M.E. (The Nightingale Definition of Myalgic Encephalomyelitis, 2007). But I continued to decline for the next two years, still unaware of having ever contracted Lyme disease, and also unaware that, in the summer of 2008, I had contracted three other destructive infections which I was unable to fight off in my immunosuppressed state: Two strains of Bartonellosis, after sustaining hundreds of flea bites via an infected cat, and Mycoplasma pneumoniae, from the children of a family that came to stay at my house during a severe storm.

These two infections sent me spiraling into decline at an unprecedented rate. Because of my immune supression, neither gave me any acute immune reaction to let me know that I had gotten them, and for the same reason, their effects on my nervous system began immediately. I was forced to try attending university from home in an attempt to complete my degree, but after dropping from a 4.0 GPA to a 2.5 GPA the following semester, the reality that I would need to drop out finally caught up with me.

I had begun experiencing a host of new symptoms, from facial palsy to the beginnings of dystonia to severe muscle spasms that brought me to the floor. My sleep schedule became permanently reversed. Chest pain, chest pressure, and arrhythmia became a daily, even hourly event. The Postural Orthosatic Tachycardia Syndrome (POTS) I had dealt with off and on with the M.E., had become severe to the point that I could not stand up but for a couple of minutes, exacerbated by the fact that I was now battling dehydration daily. In a matter of eight months I was bedbound, unable to care for myself at all, and forced to call my family to come get me from my home, to stay with them indefinitely.

It was Fall of 2009 when I realized I had a bunch of peculiar symptoms and patterns that did not match M.E., and after being bombarded with information about Lyme disease just about everywhere I turned, I remembered a tick bite I acquired three years prior. (But “there’s no Lyme in the South!”) I immediately set out to be tested via Western blot and, as per usual, requested to see my results. Only one band showed up — band 41 — but I knew this was enough, coupled with my exposure, abundance of left-sided symptoms, and monthly symptom flares, to seek out an LLMD, or Lyme Literate Medical Doctor. I began a trial treatment for Lyme disease (Doxycycline) within weeks, and though I didn’t leave my family’s house — rarely even looking outside! — for three months, I gradually got my life back. I was able to stand up again, breathe again, and had “lots” of energy (in comparison to being bedbound, at least) even though I was still hindered by the effects the M.E. had on my muscle function, et cetera.

The day before Christmas that year, I sustained a severe flare of some (supposedly unidentified) bacterial infection, that not only sent me to the Emergency Room but hampered my immune system so much that I developed disastrous candidiasis; I was forced to stop my antibiotic therapy altogether, despite having been on preventative measures for this scenario the entire time I was in treatment. Stopping the treatment with Doxycycline resulted in an immediate relapse and flare of bartonella symptoms, and marked the begining of me even realizing I had this infection, as its typical presentation had been masked by the Lyme disease.

At the time, I thought I’d conquer the candidiasis within several months and be back in treatment relatively soon. So, completely unaware of how quickly things were about to fall apart, I returned to my own home three months later in 2010, with every intention to resume classes, finish my degree, and get on with my life. After all, I had dealt with having M.E. before, and felt confident I could come up with enough accomodations to at least live on my own again.

 

And yet, I remained unable to restart treatment even after every “trick in the book.”

With the untreated infections rapidly progressing, I gradually became more and more fatigued, developed full dystonia on the left side of my body, and experienced another severe infection relapse just four months after I had returned home. Everything was back: The chest pain, chest pressure, POTS, arrhythmia, muscle spasms, uncontrollable dehydration, and I had developed pleurisy. I contacted my family once again, this time knowing I would have to move out of my home completely. Upon arrival at “my new home” the next day, they immediately took me to the nearest clinic where, within minutes, I was sent to the Emergency Room for tachycardia (180+ bpm) and low oxygen levels (80%). Because of this my doctor put on home oxygen, and I also required a wheelchair whenever I could be out of bed, which was literally only minutes at a time. I was effectively bedbound. And that is when I made this blog.

As the infections got worse–the Lyme disease, the bartonellosis, the mycoplasma, the candidiasis– so did the ME. Research has shown that it does not matter what combination of infections you acquire with this disease, that, like with AIDS, they all contribute to the same outcome: Illness progression. But one good thing that happened in the midst of all this, was being retested for Lyme Disease through IGeneX laboratories: This detected multiple bands — five of them! — in contrast to the mere one band that showed with my previous Western Blot. Of particular importance was the emergence of band 39, which is the most Lyme-specific of all the bands. I finally had a positive Lyme test. Subsequent testing still has shown additional positive bands, and I also finally managed to obtain a positive bartonella test through a specialty lab, after probably a dozen false-negatives from other labs with extremely poor sensitivity. You don’t nearly die from something that isn’t there! Despite the circumstances, it felt amazing to be validated after so many doctors didn’t believe me.

After a round of Sporanox and beginning high dose Vitamin C, the candida overgrowth was finally beaten into submission; I prepared to resume treatment for the rest of Lyme & Company. But before that could take place, I experienced an unforeseen and extremely rare septic-like reaction to my usual probiotic supplement. This was perhaps the most frightening thing to ever happen to me, and serves as proof that one should ONLY EVER take what level of probiotic they NEED. Yes you CAN take too many probiotics, especially if you are immuno-compromised. Do not continue taking high-dose probiotics if your condition improves, because this can be potentially fatal. (You can read about the incident here.)

 

In January 2011, after a full year of not being able to tolerate them, I finally resumed antibiotic therapy.

And because the infections had progressed so much while off treatment, within six weeks I found myself hospitalized for five days from a severe herxheimer reaction. It left me in a state many “Lymies” only read about, despite my doctor and I doing our very best to avoid this very real and dangerous scenario. I presented with having something akin to seizures, but after several weeks of additional doctor visits and symptom charting, the true cause turned out to be autonomic neuropathy, brought on by trying to kill the infections. After a hellish couple of weeks in recovery, the treatment was working: I was out of my wheelchair, able to walk on my own, and soon able to gave back the supplemental oxygen, for I no longer needed it. I continued to make improvement month by month, and in January 2012, I completed treatment for bartonellosis. Or at least I thought I had…

My doctor and I then made an attempt to begin Lyme disease treatment, but the toll of the very-necessary treatment for candidiasis and bartonellosis proved too much for my body. With my immunodeficiencies and very neurologically-oriented, seven-years untreated strain of infection, I now have late stage neuroborreliosis. And with my twelve-year history of M.E., fourteen-year history of just trying to stay stable every single day, and weakened system due to the toxic chemicals needed to kill the other infections, my body has been through too much.

 

This is no longer a disease I can conquer forever with a few rounds of treatment.

At this point, I will probably never get rid of the Lyme disease. And mid-2013, I found out the bartonellosis has come back out of remission. It took everything I had to make the decision not to treat these progressive infections anymore, because trying to cure myself was all I knew how to do. But I am doing my best to take care of myself in every way possible in lieu of treating-to-cure. In October 2014 I began non-invasive intravenous immunoglobulin therapy (IVIG) in my home, in hopes of slowing things down.

 I am no longer at war with my body. I’m still alive, and I made the choice to enjoy Life as much as I can, while I can.

I was bedbound when I created this journal, but I eventually upgraded to housebound. As of now, I would consider myself partially-housebound. I still use a wheelchair for long trips, cannot drive, and need help preparing meals, but considering the outrageous combination of illnesses with which I’m dealing, I think that to be quite blessed. This blog started as my health diary to track symptoms, but gradually changed into my place to talk about all things related to the life of someone disabled by severe chronic illness, especially through the lens of mindfulness and acceptance.

So hi, I’m Kit. I’m an Optimistic realist, Artist, Universalist, Buddhist, and Spoonie. Welcome to my site, where I always look for the colours in the darkness…

a rainbow at night

20 thoughts on “My story

  1. While I sympathize deeply with your troubles (I’ve been to at least two doctor’s appointments every week since late July, though in other respects my story pales to yours) I wish I could explain how sad it makes me to see you focus on this! Your medical troubles, while part of your story, are not who you are. We all suffer, and yes, you have suffered more than most, but there is still much to be done and much you can do, even if you wind up doing it a little unconventionally. I hope that you find something powerful you can dedicate your efforts to, and work to create something which makes you happy and proud.

    • Oh, dear! I thank you for taking the time to read all of that and reply. :) But please realize that this is JUST my health blog, so my entire focus on here is to talk about my health concerns, rants, and whatever else applies, to keep an online record of my journey. I have a personal blog to keep up with friends, talk about day-to-day happenings, and whatever projects I may be attempting (though they are admittedly small for the time being, they still count!), but I do not talk about all of that, here.

      Actually, the purpose of this place was specifically to get all of my health rambles to a seperate account, because they were taking up too much space on my personal journal, and.. like you said, I don’t want it to seem like that’s all I am, because it is not. So thank you, again, for yours words, but rest assured I do not define myself by any illness and agree that the sick and disabled still have worth, and value. :) Please stop by any time! <3

      • Thankyou, Dear One, I have read Your blog and finally feel sort of vindication. I have been diagnosed as a hypochondriac by my family for so many years. Been through the CFS crapola, the Fibro, the lifetime migraines. A few weeks ago, I found out I have Epstein Barr virus and Bartonella Henselae. No wonder I feel like crap. No wonder I have swollen lymph glands. Well, my so called primary care physician told me that I have these things and there is nothing they can do, but hope to get better. So go home, I will see you in six months. Yeah, right. That woman will never see this gal again. I am searching for a lyme disease proficient doctor in the south west fort worth area now. I am hoping to have coverage through my insurance…wish me luck. I have been through hell. I know what pain and sickness and exhaustion are, and I have not slept well in years. I appreciate You…Sincerely, Holly

  2. I’m pretty speechless after reading your story. I hope that LDN will offer you some relief, as it has done for me. I would also like to say that although you are obviously quite sick, you’re ability to write is quite amazing, especially considering all the cognitive problems associated with ME.

    • I think the same thing whenever I see fellow M.E. sufferers posts, however I also know what we have to do and how long it takes in order to make coherent blog entries. I like to say that these diseases didn’t make me dumb, just.. slower!

      I owe most all of my cognitive improvement to olive leaf extract. (I don’t think I was on it when I made this section of my blog, so it admittedly took a very long time to put together!) Another thing that helps me think more clearly is hydrocodone, whenever I need it for a severe headache, which is one of the reasons why I’m excited about trying LDN: If my body reacts so positively to other things that temporarily bind to the opioid receptors, I can’t help but wonder if the LDN would give me some of the same benefits. We shall see! :)

  3. Hi, precious!

    There is SO much I have to say to you but I’ve been up for way too long right now, after a few days of massive pain then rest and regeneration to where I am now. I don’t want to push it, with typing and staring at this screen much longer, y’know? :) Shhhh, don’t wake up the spyrochetes! ;)

    What you share is sooooooo familiar to me. I was diagnosed with Lyme in the summer of this year although it looks like I’ve had it for at least ten years if not since childhood. I’ve had ticks under my skin four times in my life but never associated them with the ridiculous “flu” I had, then joint pain, exhaustion and debilitating head pain I’ve experienced for so very long now. Along with so many other things.

    The fact that you’ve been so incredibly detailed here is both helpful and overwhelming lol! I sometimes feel as if Lyme has taken over my life and don’t want friends to ask how I’m feeling because, although I know that they do it cuz they care, I hate to always have a “bad” answer and I so want to be a positive person, not dragging everyone down with not-good answers! I want to be a light and a ray of hope and a funloving human being dancing with life!

    I won’t go on and on about it but I did want to ask you a question:

    I’ve been on first doxycycline and then ceftin and it’s been maybe 3 or 4 months now, I’ve lost track. (Although I have zillions of pages of notes documenting my symptoms and my medications, that would tell me if I were to get up and look at them, you know all about that :) You mentioned that you had been on antibiotics for 2 years before you began feeling better … but you still have these monthly bouts of symptom attacks (medical term ;) This is a sincere question and I hope I phase it right … It’s really for my own information and wondering what to expect … and I know each person is different.

    The question is something like this:

    If you’ve been on 2 years of antibiotics and feel better in some way … but the symptoms come back in a monthly cycle … What’s the part that is “better?”

    Is it that the spyrochetes get killed but some of them were hiding and didn’t get killed and they grow and create problems?

    One doctor told me a month of antibiotics should be enough to kill them. But I’ve known people who were on antibiotics six months and others who were on them for many, many years. And still not better. So how do the antibiotics help if they are still not better? I’m so confused!

    I just am trying to figure this all out and hope the question feels ok for you.

    I hope that today is a good day for you … or relatively good … or that amongst the symptoms are some beautiful, fun, happy, joyful, bright and wonderful things …

    Love,
    Colleen

    • Hello!

      I do understand what you mean about answering the “how are you” question. I somehow felt responsible for the fact that my body was in a poor state, and it pained me to have to tell people about it. But if I’m having a bad day, well, that’s just how things are, and that doesn’t have to subtract from the fact that I’m trying the best I can. :)

      I wasn’t on antibiotics for two years before feeling better. I was on them for four months before feeling better. The first time I improved, however, it was somewhat superficial. I was also on Doxycycline, but something funny that happens is that, despite it working really well for coinfections, what it actually does with Lyme disease is DOUBLE the rate at which the bacteria turn into cysts. And the cystic form doesn’t cause symptoms, but only certain antibiotics can kill it. So it just hangs out and waits until the time is right, and opens up all over again, resuming all symptoms. This is probably a major factor why the standard 2-4 weeks of Doxycycline that doctors give doesn’t cure all cases of acute Lyme disease. For this reason, true success is almost always reached with combination therapy, to attack all forms.

      Antibiotics work in two ways, either by killing the bacteria (bacteriocidal), or stopping it from replicating (bacteriostatic). Some do both. For our type of infection, which requires long term therapy, you need to be on both–to gradually kill off the ones that are there, and stop the ones that survive from replicating further. If someone is just on one type, the bacteria develop a resistance and that antibiotic will become useless.

      Most antibiotics only kill the bacteria when it goes to replicate. And the replication pattern is different for each bug. Lyme usually replicates every 4 weeks, bartonella every 5-7 days, babesia every 4-6 days, and mycoplasma every 3 weeks. The symptoms are often worse during these replications, but that’s also when the antibiotics are most able to kill the bugs. (Many people cannot tell when these flares happen because they have have been bitten many times and have more than one set of bacteria, each replicating at their various intervals.) With my treatment for bartonella, the flare ups have gotten milder and milder. Actually lately, they’re becoming almost nonexistant, so I know we’re on the right path.

      I’ve had a lot of complications in my treatment and truly, I’ve only been able to consistently treat since January of this year. So I’ve been on them nine months, and I haven’t really been treating the Lyme disease, just more or less keeping it in submission until I beat away the bartonella and other coinfections. So yes, I still experience montly Lyme flare ups, because I’m not truly killing the Lyme, yet. I start that in a few months. ;)

      One month of antibiotics should be enough if you catch the infection when it very first starts. But that hardly ever happens. The bacteria are constantly hiding out where the abx (antibiotics) can’t reach them (such as in the brain, where only specific abx penetrate), or changing into other forms that the abx cannot kill (such as cysts, or creating biofilms). None of us can base our treatment on how someone else reacted any more than we can assume any two cases of cancer will react the same: There are dozens of factors and you do the best you can with whatever information you have available.

      Number of tick bites, type of abx, the dosage of abx, the combination or lackthereof, length of time sick, genetic predispositions that prevent detox, pre-existing conditions, immune defiency, nutrtional deficiency, combination of coinfections, type and strength of the bacteria strain…the lists goes on and on.

      I hope this helps with some of your concerns. Please visit LymeNet and you can find a great support group who can also answer questions. ;)

      Thank you so much for your comment and sharing your story–don’t be a stranger!

      ~ a rainbow at night

      • You are SUCH a gift to me right now, I can’t even begin to tell you! I was feeling so lost and confused … so tired of feeling sick and guilty about not doing much each day and about disappointing my boyfriend who can’t do with me all of the things we used to do together … and burdening my family … but the description you gave here was better than anything I’ve ever seen. I will read things about Lyme and get more confused, it’s such a complicated thing. But what you said totally brought everything into clear focus for me and suddenly I felt hopeful, just to understand what’s going on a bit more. You gave me some new words to look up and I started making this document of information for myself, starting with your message here, which gave me so much insight to everything I’ve been experiencing.

        I am so thankful.

        I used to be on Topamax too … it never fully got rid of the head pain though. In a few weeks I need to go to the neurologist to see if the head pain I’ve been getting lately is occipital neuralgia. It’s amazing how many words we have in common! lol ;)

        Anyway … thank you so much for the miracle that you gave to me. I will always be grateful to you. When I say it changed my understanding and gave me hope, that doesn’t even do it justice … It’s like a little miracle for me. Thank you.

        I hope your new neurologist kicks major butt :) and that today brings little pockets of joy here and there for you.

        Love,
        Colleen

        • Wow… Your words have blessed me very much. I am HONORED to have helped you in any way possible. If this is truly as much of a miracle as you say, I believe you were led to my site for a reason, and I thank God for the words He gave me to tell you.

          You will definitely know if you have occipital neuralgia. It’s the most painful type of headache I’ve ever had in my life–I always say I’d rather have a full blown migraine for a full week, than have one of those for even a day. I hope you aren’t suffering with them, too, but if you are, rest assured that with treatment they’ve gotten less and less!

          Thank you so much, again, for sharing your words and kindness with me. I highly suggest you sit down with family and friends and partner to watch “Under Our Skin”–it really helped my loved ones understand what was going on, and how much of a battle it was going to be, for all of us. You can watch it immediately for $4 on Amazon, or buy the DVD.

          There is always hope! It sounds cliche, but it’s true. Hope doesn’t necessarily mean getting what we want all the time, but it does mean a chance for happiness and peace in any situation. Things can always get better, even if that means starting with us and the way we see things.

          I hope you continue to find my site and online support groups useful. <3 Many blessings to you! <3

          With love,

          a rainbow at night

  4. Thank you for your thoughtful and complete posts. I did a quick read, finding my way here while trying to get some information on Tinidazole. It is despicable that your insurance company forced you onto Flagyl, which seems to be greatly inferior drug.

    Please keep posting on what you experience and learn. So little is known about these diseases, and there is so much misinformation and propaganda, that any accurate information is invaluable.

  5. Hi. I just read your blog about having to lie to people about what a person who is chronically ill feels emotionally and physically out of fear of losing them. I know this feeling too well. SInce I was born I’ve had Chronic kIdney Disease. I’ve been led to believe that all the medical things i’ve gone through…. transplant, doc visits, shots for anemia,… would be a solution to the problem. Only recently do I find out that it only eases the symptoms, and that there is no cure for this disease. Am I the only one that feels in human with this kind of thing? I’m actually afraid of people finding out I have this, for fear I’ll be rejected like I have the plague. Recently i’ve now dreamed that I am currently dying and in the dream was telling a friend of mine. Odd thing was that I was probably more at peace in that dream than I’ve ever been and when I awoke, I missed how it felt.

    • Hi, did you mean this entry?

      I do understand, and I’m sorry you’ve had to sift through these issues. I was actually just mentioning yesterday how I don’t want to give the illusion I’m going to be “miraculously” healed (physically) by Lyme treatment. I still and will always have M.E. until they find a cure…but treatment for these infections helps so, so much. I no longer have one foot in the ground right now, but I will always have this disease…

      As for your dream, a GREAT resource I LOVE to use is the dream dictionary at DreamMoods.com. You can search for all sorts of themes, and figure out what your subsconscious is trying to say. It’s scarily accurate!

      I’m thinking you missed the peace of being “out” in the dream, as someone with a chronic disease, and being accepted for it. I hope you can soon come to terms with illness being just another part of your life–if you don’t treat it like it’s your entire world, other people won’t, either. :) Thank you for sharing your thoughts with me. ♥

  6. Hi Thanks for your response. = ) I need to look at the site you recommended. However, another interpretation I read said that, dreams like that are normal with people that have incurable illnesses. Its like accepting that its not curable. Makes sense to me.

  7. Keep up the good fight!

    Thank you for your excellent blog.

    This is a HUGE national problem being swept under rug. Keep your cowboy boots on. Tickborne diseases are no joke. Please keep reading!

  8. So what antibiotics are you taking now? My GP recently diagnosed my with Mycoplasma after I felt so crappy and “flulike” for three months. (I was also treated for Lyme Disease about 10 years ago. I don’t have the resources to see a specialist. But maybe I could ask my GP to give me the same meds.

  9. Can I ask how you were tested multiple times for tick-bourne illnesses? Did insurance cover those tests? One doctor ordered the IgeneX Lyme+coinfections test for me, but I never got it done because it is $1100. I still wonder if I could have any of these things going on. My Western Blot was negative. Also, can you tell me what brand of vitamin C you used for your high-dose therapy? Thank you!!

    • I’m disabled and thus Medicare has covered all my testing costs; they paid for IGeneX tests after I met my deductable, but that’s a special circumstance only for Medicare, I think. IGeneX says on their website that most insurance will not cover it, but maybe there is a process you can go through with your insurance to see if they’ll pay, such as a special authorization from your doctor stating you need it? I don’t know how all of that works, but you can call both IGeneX and your insurance to discuss with them your options!

      The regular western blot only tests for 13 bands out of I think 26 that could potentially react, so pretty much everyone is going to have a negative Western Blog unless they’re in the beginning of infection AND have a strong immune response. I had neither, so it didn’t show anything but band 41 at first. (Some tests don’t even show you which bands you potentially had reaction to–just because they say it’s negative doesn’t mean you didn’t react to anything at all. You can ask to see it, though not all labs show the bands.) I took that and rolled with it, and through IGeneX testing found out I actually reacted to five bands, including band 39, which doesn’t react to anything except Lyme bacteria; if that’s positive, you’ve been exposed to Lyme disease. Additional tests have shown me to react to more bands, different bands, including IgM bands, indicative of ongoing infection.

      That’s only one piece of the puzzle, though–if you’ve been exposed to a tick, inside that same tick are even worse things, things that cause similar symptoms but progress much quicker because they replicate much faster than every 3-4 weeks like Lyme does: Babesia, bartonella, ehrlichia, anaplasmosis, even EBV, can all be inside the same tick. Dr. Horowitz nicknamed this MSIDS, or Multi Systemic Infectious Diseases Syndrome, because you never really JUST get Lyme, you get Lyme & Friends. Sometimes you don’t even get Lyme at all! Depending on where you are (in the US?), babesiosis is actually more common than Lyme disease… That worries me, especially in you, because you keep mentioning malaria on your blog, and babesiosis is (1) related to malaria, (2) acts just like it, (3) and you have all the symptoms, especially the exercise intolerance and drenching night sweats which are classic symptoms in the beginning. It can kill you, it IS deadly, so please find a way to investigate this more indepth. My best friend had this, and it’s almost indistinguishable from M.E.

      IGeneX tests for babesia, too, and the set of tests your doctor ordered MAY have included that, if they know what they’re doing at all. (If they don’t, you can find a Lyme Literate physician on LymeNet.org, in the flash discussion forums.)

      You can also request JUST the babesia test from IGeneX. They came out with a new thing a few years ago called a FISH test that is supposed to be more specific because it actually looks at your blood, I think it was $165 on its own? They may have refined things even more since then.

      Also, have you ever had your immune system tested? Your history of upper respiratory problems, asthma, allergies, etc., sound very much like you could have immunodeficiency in addition to what you already have. I do. It can also keep you from producing antibodies, so testing positive for things can be challenging even if you have them……………………………
      actually I just searched your blog and read that you DO have immunodeficiency. Okay. But you DO NOT have to do the vaccine test to get approved for IVIG. I have denied it repeatedly because it is too risky. Like you, I react terribly so I’ve stopped getting vaccinations all together; I experienced transient limb paralysis after my last flu vaccine five years ago. You know your body. You can get IVIG on the basis of having immunodeficiency. My doctor also tested me for antibodies I was supposed to have made from PAST vaccines, and that was extra evidence, because I only had a few antibodies remaining when I was supposed to have a lot more.

      Good luck. Get tested for babesia immediately. (I’m not surprised your malaria test came back positive that one time–syphillis and Lyme can cross-react because they’re so similar, too.) And make that immunologist appointment! ;)

      Kit

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