Greetings. I spend most of my MedHelp time over at the Lyme disease forum, but thought to post here to invite any of you who are interested to visit with us at the Lyme site and consider the possibility of misdiagnosis.
So-called mainstream medicine is in denial about the widespread nature of Lyme disease and the complexities of treatment -- a couple weeks of antibiotics is, unless caught almost immediately after infection, inadequate treatment.
The MDs who are the obvious specialists to deal with Lyme are infectious disease (ID) docs and neurologists, because Lyme is an infectious disease carried by ticks and perhaps other insects (also communicable to the fetus during pregnancy and perhaps in breast milk) and Lyme often has significant neurological effects due to inflammation of the brain and nervous system. For historical reasons, however, the MDs who set diagnostic and treatment standards in the ID and neuro specialties long ago staked their reputations on Lyme being hard to get and easy to cure. These standards have, for reasons of professional stubbornness, not been updated despite significant advances in the understanding of Lyme and its course and treatment.
Lyme is not always easy to diagnose, because it affects each person differently, some with more physical aches and pains, others with more neurological issues of confusion and irritability. In addition, symptoms can come and go and change over time. Lyme is serious, however, because its cause is a spiral-shaped bacterium in the same family as the bug that causes syphilis. If you have ever read about the long-term effects of untreated syphilis, including dementia, you will understand why effective treatment for Lyme is critically important.
MDs who are more open-minded with regard to Lyme are often called by us patients by the shorthand name "LLMD", meaning a Lyme-literate MD, one who thinks bigger thoughts about Lyme than mainstream medicine. Being an LLMD is not a diploma or a certification: it is a state of mind. And an LLMD almost never calls him/herself an LLMD, so asking a doc whether s/he is an LLMD will not usually be a useful question. To make matters worse, in some states, MDs who take a more progressive view of Lyme treatment and diagnosis can be hauled up on charges before state/local medical boards for 'overtreating' with long term antibiotics. Thus discretion is indeed the better part of valor. You will see, if you visit the Lyme site here at MedHelp, that we do not post the names of our LLMDs, for those very reasons.
There are three aspects of Lyme that bear mentioning briefly here:
1 -- Slow reproductive time, requiring longer treatment. Bacteria in general are most likely to be killed by antibiotics while the bacteria are dividing (= reproducing). Most bacteria reproduce very quickly, like every 20 to 30 minutes, and are normally treated with antibiotics through almost 500 reproductive cycles. Lyme bacteria, however, reproduce every 7 hours or so, so treatment for Lyme should, by that measure, be up to 30 months, though not always that long. (See the website 'lyme disease resource [dot] com' among other places.) In addition, Lyme bacteria are able to conceal themselves in gooey shields within the body where the immune system has difficulty locating them, which requires certain antibiotics such as Flagyl which are effective against the gooey biofilm shields. Many nonLLMDs reject or ignore this aspect of Lyme, without explanation, but consider how long standard antibiotic treatment is for tuberculosis, which is also caused by bacteria: at least 18 months. And nobody disagrees with that, because TB bacteria ... yes, reproduce slowly.
2 -- Other diseases carried by the Lyme ticks. The tiny little ticks that carry Lyme are not the only ways to be infected -- other ticks can carry Lyme too -- and ticks also carry other diseases not related to Lyme, often called generally 'co-infections.' Lyme plus one or more coinfections is not a 1+1=2 effect. Instead, it is often a 1+1=4 effect, because of the way in which Lyme affects the immune system and limits its reaction to other infections. NonLLMDs often do not test for possible coinfections, and if they do, they sometimes refuse without explanation to treat even in the face of such evidence (that happened to me -- positive test for a coinfection, and refusal to treat -- without explanation).
3 -- Lousy tests. The standard tests used to detect Lyme are out of date and not very sensitive, but nonLLMDs rely on those test results and disregard assessment of the misery the patients are suffering and default to diagnoses of emotional problems (I got that one), psychological disorders, MS, and a whole list of other things. LLMDs use tests from other labs, but nonLLMDs ridicule the tests for reasons that are not clear (other than not supporting their preconceived notions.) To nonLLMDs, Lyme is a settled matter; to LLMDs, the mysteries are just being unravelled.
In summary, there is a tremendous split in the medical community that is not just a difference of opinion, but are moral judgments against LLMDs as quacks and incompetent fraudsters. Someday soon I hope this will all be sorted out, but until then, we are on our own, and too often sent to psychologists instead of being treated for the infection(s) we have, or treated for the wrong diseases.
If you are ill and not progressing and want to read about what some of us have been through and what approaches we have used to find appropriate diagnosis and treatment, come visit the MedHelp Lyme forum. There's always somebody hanging around the water cooler there. Also check the website ILADS [dot] org, the main group for LLMDs, which has much useful information.
PS -- sorry, a couple more points some of your posts triggered in my mind:
1 -- fatigue: Lyme often has debilitating fatigue as a significant symptom
2 -- auto-immunity: the nonLLMD approach to Lyme says that after a couple weeks of antibiotics, any remaining symptoms are due to your immune system accidentally reacting to the bacterial infection that is no longer there. The logical precept that says the most efficient explanation for any phenomenon is likely the most correct applies here: if you're still having symptoms, it's probably because you're still sick!
I appreciate your concern for us. I do not know very much about Lyme disease (besides seeing a rather disturbing documentary), but I am curious about it. Well, I'm curious in general. :)
I have two questions, if you do not mind.
1. What are your thoughts on the accuracy of testing the cerebrospinal fluid for Lyme?
2. Would Lyme and MS lesions occur in similar places in the brain? There are specific areas that tend to show damage from MS (as seen on MRI)... wondering if they would be the same with Lyme or if that could be used to sort things out.
Again, thank you for your concern for our well-being.
Thanks for the message. I hesitated to stir the pot by posting here, since I imagine anyone with an MS diagnosis has plenty to deal with already, so glad if I can help a little without adding unnecessary uncertainty and distress.
About that documentary you mention: I assume you mean 'Under Our Skin' ('UOS')-- I thought it was awful. It was sensationalistic instead of informative, and while it succeeded in getting attention, it did imo a very poor job of explaining the difficulties of diagnosing, treating and just plain understanding Lyme. I was very ill with it, but never all twisted up like 'Mandy', and I haven't ever corresponded with anyone who had her specific symptoms -- everyone is different, but that kind of muscular wasting is not common, as far as I know. The movie succeeded in drawing attention, but imo not in educating.
I saw UOS at a small 'art house' theater near here just after it was released, and afterward the director and some other normal-looking people went up on stage and took questions. The people were not introduced as they took questions, and it was only later I realized that they were the miserable Lyme patients shown in the movie, including Mandy! They looked normal and healthy, amazingly so.
Coincidentally, I saw Mandy interviewed live just yesterday -- she just graduated from nursing school and is fine.
To your questions:
1 -- Re spinal fluid: To my understanding (and I'm not medically trained), spinal fluid is not an accurate indicator of Lyme infection. The following is quoted from the ILADS summary guidelines at ILADS [dot] org. They are currently under revision (as science marches on) but these are still valid, acc. to the website:
"Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection. In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity. For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity."
I read that to say that lumbar puncture and sampling of spinal fluid is NOT reliable as diagnostic for Lyme, although I understand nonLLMDs do rely on it, I think because they are working from a different paradigm. What's the old saying about when the only tool you have is a hammer, all problems tend to be defined as nails.
2 -- Re brain lesions: I have not studied what MS brain lesions are or look like, but 'lesions' isn't a term I've seen used in neurological Lyme, meaning Lyme that particularly affects the brain and nervous system. Some people have a lot of neuro symptoms, others it's more muscular and joint, others it's some of both, and it can change over time. Tricky, eh. I had some significantly low blood flow to parts of my brain per the SPECT scan, but it's fine now after treatment.
From what I read, and based on my own diagnostic and treatment experience, MRI is not particularly diagnostic of Lyme. It can be helpful to rule out MS, but that doesn't answer the question about whether it's Lyme or not.
Neurologists default to using MRI for diagnosis, but LLMDs tend to use a SPECT scan, short for "single photon emission computed tomography", which measures blood flow through the brain, which can be restricted due to swelling in Lyme, as I understand it. Areas of hypoperfusion (low blood flow) are consistent with Lyme, and account for the poor memory and concentration often seen in Lyme disease.
So, bottom line, using MRI to diagnose or rule out Lyme disease is like using a thermometer to measure tire pressure: doesn't work too well.
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