Can Lyme that has not been fully treated and been chronic for over a year be successfully treated aggressively?
One doctor said I have fibromyalia and the fibromyalgia doctor said it is Lyme driven. If I have treatment like intravenous antibiotics, will I have a change of full recovery?
From my reading, many of us with Lyme do not find out for an extended period of time (sometimes many years) that we have Lyme and/or its coinfections carried by the same ticks as Lyme.
Treatment can indeed be successful even after an extended infection, but there is tremendous dispute in the medical community over diagnosis and appropriate treatment for Lyme+. The first hurdle is getting a correct diagnosis; the second hurdle is determining what treatment is most appropriate. Because so much is not yet known about Lyme, different MDs use different medications for varying lengths of time and in various combinations: there is no one single 'correct' treatment.
IV antibiotics are sometimes used, but I can't say how common IV usage is vs oral antibiotics. It is my impression that IV is generally used for the toughest cases because IV is harder to monitor and runs the risks of infection from the PICC line used to infuse the drugs. It is foremost a judgment call by the treating Lyme doctor.
(Lyme specialists are sometimes called LLMDs, slang for 'Lyme Literate MD', meaning an MD who recognizes Lyme disease [and its coinfections which are carried by the same ticks] as serious ailment(s) which, once entrenched, needs more than a couple of weeks of treatment. The co-infections often need different antibiotics than are used against Lyme, and need to be tested for specifically based on your symptoms. Also be aware that the tests are not very accurate in many cases, and the MD must interpret the test results in light of your symptoms. LLMDs are, in my experience, more likely to run those tests with the preferred lab and to interpret the test results in a more educated fashion.)
Fibromyalgia seems to me to be one of those catch-all diagnoses that identifies a collection of symptoms but for which the medical community has little idea of cause or treatment; fibro specialists are sometimes (often) among the group of MDs who deny that Lyme is hard to get and easy to cure and who believe that Lyme is a false diagnosis foisted on stupid patients by quack MDs. More broadmined MDs suspect, however, that fibromyalgia symptoms may indicate Lyme or other disease that has not been properly diagnosed, so you are fortunate in having a fibro specialist who will consider Lyme as a *possibility*.
The best known organization for LLMDs is International Lyme and Associated Diseases Society, or ILADS for short. Their website is ILADS [dot] org includes much useful information including treatment guidelines authored by Joseph Burrascano MD. The guidelines are long and exhaustive, but it will give you an idea of current thinking in the LLMD community, but don't get overwhelmed by them: they are really written for MDs. But it is an excellent website you may wish to visit.
Lyme is a tricky disease, in which the bacteria have the ability to hide inside the body in an adverse environment (such as in the presence of antibiotics) and have a long reproductive cycle (which means that long courses of antibiotics are likely needed to defeat the bacteria, compared to other bacteria). And there is more about Lyme still being discovered. I believe that there are those who are cured, and those who drive the bacteria into hiding such that it appears to be a cure, so that pursuing treatment is, in my personal opinion, very much worthwhile.
No one posting here is an MD, to the best of my knowledge, and others may have other opinions, but we all wish you the best. Let us know how you do.
Thank you so much because what you have told me validates the lay-research, reading, and networking I have been doing. You are so right about the Lyme ILLITERATE DOCTOR who refused to listen to me when I told him I thought I was not treated completely for Lyme.He put me on Lyrica which helped my pain for a short period of time but eventually made me quite depressed. I am weaning off Lyrica and taking Cymbalta until I can see the Infectious Medicine doctor in two weeks.
I will follow your link as I have seen it before but this time I will print some of it and take it with me.
I will keep you posted and thank you so much.
I'm sorry to hear your previous MD didn't understand Lyme. I don't want to discourage you, but be prepared for the ID doc you are going to see to not be up on Lyme either. Now, he may be just fine, and you should go see him, but ID docs as a group are not generally Lyme-aware or Lyme-friendly. Your guy may have a broad mind, but just in case, thought I'd warn you.
As an anecdote: I went to see an ID doc before I was diagnosed with Lyme and babesiosis, and I was one very sick chicken. I was however having a reasonably good day when I saw the ID doc, and he looked at me and listened to me, had me do some balance tests, and then showed me the door, yelling down the hall to his receptionist, "No follow up appointment for this one!" And that was the end of that. After doing some reading, I then realized that ID docs and neurologists and rheumatologists are often among the most significant Lyme-deniers.
The Infectious Disease Society of America (IDSA) is the main ID MD group in the US, and the diagnosis and treatment guidelines published by the IDSA (and endorsed by the CDC) are written by the original MDs to claim that Lyme is hard to get and easy to cure (I think I said that backwards in my earlier post above). Drs Wormser and Steere were two of the original Lyme investigators, but they stopped investigating and thinking and refining when they had established their careers as 'experts' in the field. And today they cling to their original conclusions that if your symptoms persist after two weeks of antibiotics, then it's because your immune system is still reacting to bacteria that are no longer there, because any fool knows that two weeks of meds is long enough to cure any bacterial infection. Wormser, Steere, the IDSA and the CDC maintain that if you still have symptoms after two weeks of treatment, you have 'post-Lyme syndrome', caused by your immune system being 'stuck on stupid' and unable to stop reacting (note that Lyme tests measure not the bacteria in your system, but antibodies your body produces against the bacteria).
These theories of Wormser et al. were developed before understanding of the very slow reproductive cycle of Lyme bacteria, which means that the usual two weeks of abx that works for most bacteria does not work against Lyme.
And on top of it all, since the IDSA is the premier group in US dealing with infectious disease, other MDs also look to the IDSA standards of treatment as the final word. So even MDs beyond ID, rheumatology, and neurology tend to line up behind the IDSA. It is a rare, independent-minded MD who can look at the evidence and think more creatively and see that their patients continue to suffer from something other than some vague 'post-Lyme syndrome.'
I truly hope the MD you are going to see is one of those independent souls, but be braced for the possibility that he is not. If that's the case, let us know and we can tell you sources for finding an LLMD.
The fibro doc does not treat Lyme unfortunately. He told me to find a ID doc as fast as I could. I checked with two doctors, both of which, look at spinal fluid and use aggressive IV intervention. I am hoping with documentation and some of these anecdotal samples, and my head strong attitude, I can get him to work with me.I have a friend who was very sick with neurological problems. This particular doctor did a spinal tap and treated her aggressively with oral antibiotics. Another friend went to this doctor and was admitted to the hospital for intravenous IV due to Lyme . I am hopeful he can help me as well. The doctors names are: Dr. Tack and Dr. Cutler in Kingston New York. Dr. Maggiore in Albany New York.
I will keep you posted. Thanks Jackie
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