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Thursday, November 10, 2011


Readers know - the suffering of Lyme is so great that contemplation of suicide is common. And then to make matters worse - so often, the degree of misery is unseen by those closest.

Many suffering with Lyme have heard from others: "I had Lyme: it was no big deal."

"He should only be in my body for one day!"

Maybe these unsympathetic individuals actually had a different version of the disease.

It turns out "Lyme" may a wide diversity of clinical presentations because patients are frequently infected with different strains of the organism.

Maybe we can begin to answer the question: why do some patients infected with Lyme with the tell tale EM rash never become sick without treatment, while others infected with Lyme disease treated early with recommended doses of antibiotics go on to develop full-blown chronic Lyme disease?

Research has shown that some strains of Borrelia burgdorgeri are more virulent, quickly causing dissemination into tissues, while others strains are relatively benign and may be associated with little or no disease. Borrelia bacteria show a surprising amount of genetic diversity.

Lyme bacteria have been here for thousands of years providing a long time frame for evolution and differentiation. The famous iceman dug up from the permafrost in the Italian alps in 1991 has now had an autopsy. The DNA from a fragment of hip bone showed an unexpected finding: Borrelia burgdorferi. Likely, persisting DNA from cystic forms. Still, I am surprised not only that Bb was found, but that it was found in bone.

The Lyme epidemic is world wide and has been found in all the continents with the possible exception of Australia.

It is confusing that bacteria with names like: B. afzeli, B. bissette, B. miyamotoi all cause "Lyme disease."

The international organization with classifies bacteria calls all species of Borrelia which cause human Lyme-like disease, (12 or more species) "Borrelia burdorgferi sensu latu." These associated illnesses have varying degrees of similarity and dissimilarity to our Lyme disease. Some of these species have crossed borders into other regions.

The Lyme disease bacteria we usually think of(in the US)is called Borrelia burdorferi sensu strictu. Even within this narrower sub-species of the Lyme community the genetic diversity is mind boggling and mostly unknown.

A recent scientific publication from the American Journal of Pathology studied three sub-strains of a sub-strain of Bb sensu stricto and found one sub-sub type to be more pathogenic than the others two.

To illustrate how diverse the Lyme zoo is: The study examined the pathogenicity of three strains of Borrelia burdorferi sensu strictu, Osp C (type A) known as RTST 1,2 and 3.

The Lyme Osp C (outer surface protein) is associated with the 23 band on a Western Blot. Its molecular weight can actually vary from 20-25 Kds. The OsP C protein is quite variable. Twenty-one types have been identified. One of these Osp C types, type A, was subdivided in this study into three more sub-variations based on " ribosomic RNA intragenic spacers." One was nastier than the others.

In other words, there are a gabillion versions of Lyme, some making us sicker than others.

Treatment may be difficult because of this unknown variety of strains. It is well documented that a single host can be simultaneously infected with multiple strains.

Of note: Dr. Allen Steere is one of the authors of the above described study.


Unknown said...

Thanks for the post doc, and thanks for writing again. After running out of antibiotics (long story), I've been suffering as I'm waiting to get back to the states. I read your story about the young girl who is doing well after IV ABX therapy -- well done! I had hoped that maybe my symptoms would not return, but I was not fortunate.

After a few months off my ABX, the symptoms have started to creep back. Worst of all, I'm stuck in a third world country for the next 3 weeks. It's funny how the location of the infection and strain of bacteria play such a crucial role in the treatment and symptoms displayed. I've been trying to reach out to anyone here to knows about Lyme, but my resources are few and far in between. The symptoms are enough to make me want to throw in the towel some days, and I don't know what keeps me going down here.

Again, thanks for the reminder that even though I'm isolated out here, there are others in the same position. Have a great one, doc :)

Jessica said...

Dear Sta12s,

I'm a new lyme patient who has also been reading this blog to check on medication information. Please, please hang in there. From everything I've heard, and everyone I've talked to, it can take a long time, and multiple approaches, and of course it helps tremendously to get to a doctor, but there is hope for you! I'm impressed you are even able to travel to a third world country! There is no way I would be able to do that right now. I would be too miserable.

First I was diagnosed with an anxiety disorder, then I thought I was developing schizophrenia when I began to have hallucinations, then I started losing my balance and my doctors thought I had MS, then I had heart palpitations and they were certain I had mitral valve prolapse or heart disease. I kept saying, "I had this rash. I had this strange, strange rash before all this started." They totally missed the ball, and now I'm crawling out of this hole. But you're not alone. Others are with you!!


KAM's Blog said...

Wondering if there is some way to read your blog without the dots.

My vision struggles as it is. The dots make it less lyme friendly to read.

funnybug88 said...

Thanks for your blog, it's so... sane... I am from Australia, reputedly a 'place with no Lyme'... Not true based on me and some fellow travelers (see One of the complicating factors seems to be that our labs test on IDSA/US standards, whereas we think we probably have our own (fairly neuro) strain going on that doesn't come up. I miraculously have a positive pcr from a local (but unaccredited) lab and a dr willing to treat on that basis. No witchhunts yet, and our Medicare system covers quite a bit... Although the doc risks monitoring if they prescribe unusual things... Two things: Firstly, your blog has opened my mind and been my textbook; than you. secondly, I wonder if you would prescribe iv or orals to someone in my situation. I am a bit Iike one of your case studies, I look better than I feel. I'm 36. I had acute 'viral encephalitis' at 14. A year later I got pins and needles and numbness that went on. If i was cognitively impared or had personality changes, i didn't know it, but i did have back aches and foot pain and exhaustion. at 23 I saw a neuro who found facial asymmetry, Babinski sign and some other odd reflexes, white spots on MRI,equivocal nerve conduction studies but not enough to
diagnose ms. I decided avoiding doctors was the best strategy. Raynauds (dx by a friend who is a psychiatrist - "wow, I had only seen that in a textbook") followed,
otherwise a period of wellness except the feet and some anxiety. I decided to seek an ADD diagnosis and treatment because I wanted to do a doctorate and couldn't manage the proposal, let alone the thesis. My father and brother have add, so getting dx wasn't a problem, but the drugs didn't work. Then some neck spasms for a bit. Lots of hayfever that went away when i quit eating gluten. I then quit a stressful job because it was "getting to me" and bam - first off horrible throat spasms and swallowing problems, rib, neck and back pain, more foot and joint pain. Anxiety. Mould in the house was a problem, I moved out, got renovations and detoxed. Things improved but not all the
way... And a month of rifampin and mino (prescribed for something unrelated) sent me close to the edge of a nervous breakdown and now I have burning mouth syndrome and a valium habit for the throat spasm. I have vit d reversal, low iodine, magnesium, b12 and body temp. Pins and needles, numbness and burning in hands, neck pain, occasional wobbly legs and shaky hands. I drop stuff too. My memory is shot, but it might be the Valium. I spend a lot of money a the physio and massager for neck pain and back.
Sorry if this is too much info - just one question... Do I need iv rocephan or will oral abx do? I'm worried about
neuro stuff, but iv hard to get here and am worried about associated risks. Thanks lymemd, fb.