Hi everyone, I was wondering if I could get a little feedback. A close family member has dealt with Lyme Disease for over a year now. He has been on multiple antibiotics, diagnosed (supposedly) with 6 or 7 co-infections, yet nothing seems to be working. He is now having trouble swallowing, has tremors (mostly in the hand), memory lapses, difficulty speaking and trouble with balance. Now it may be Lyme + Babesiosis- but that can be missed in blood tests, too, so no one is sure. I am by no means very educated in the medical field, however, it sounds to me like there is something else going on here. He has seen an infectious disease specialist, a regular GP, and experts on Lyme Disease and the feedback I keep hearing is that the medication must be working since he is getting all of the side effects from the meds (the symptoms mentioned above) yet there is no actual improvement. This is obviously very concerning to me because I feel he is not on the right path and that while he had in fact suffered from Lyme at one point, that all of this may be from something else. I suggested an MRI or CT Scan and was scoffed at. Does anyone have any advice or experience with anything like this? Could these all be the effects of the Lyme Disease or does this sound a little off base? Any feedback would be appreciated. Thanks
I am sorry to hear about your family member's suffering, and the distress you have as a result. It is good imo to keep "working the problem", that is, thinking over the situation again and again, turning it over in your mind to see what might have been overlooked and what might be done.
With a half dozen coinfections, the symptoms may be indistinct and muddled, as well as debilitating. It is certainly a complicating factor.
In my own treatment, the doc treated one coinfection first, because it was a fairly straightforward cure, compared to the tricks that Lyme can play dodging the antibiotics. When the coinfection was beaten, then we turned to the Lyme infection, which required different antibiotics. With a half dozen coinfections, it may take a while to see progress; I don't know.
Now let me take the other side of the question: whether the docs are doing the right things. You mention seeing an ID doc, a GP and experts on Lyme .... I don't know if you are aware of the battle going on in the medical profession over Lyme, but the ID docs are often/usually members of IDSA, the Infectious Disease Society of America, and their senior members in the Lyme bunch are the docs who first identified Lyme as a distinct illness several decades ago. Unfortunately, those senior docs defined Lyme in ways that made sense back then given the limited knowledge available about the new and emerging disease, but those same docs have clung to their initial assessments of Lyme being hard to get and easy to cure.
The IDSA is not a big fan of the main group of Lyme specialists: ILADS, the Intl Lyme and Associated Diseases Society (ilads [dot] org). I too consulted an ID doc at one point, and the contempt he felt for the diagnosis and treatment I had received from an LLMD was palpable. I had in fact just pulled another tick off me and was having florid symptoms of what turned out to be a new co-infection, but the ID doc sneered when I showed him the actual dead tick I pulled off me, and he then sent me away untested and untreated. It was shocking to me. So I went back to my LLMD, who tested me and tested the now dead tick, and the tick and I both had a coinfection I had not had before.
I tell this story to say: ID docs are not always known for their open minds, and their prejudices can get in the way of assessment, diagnosis and treatment.
GPs, unless they are broadminded and inquisitive, are also likely to follow the IDSA guidelines for diagnosis and treatment, because GPs can't be authorities on everything and naturally turn to the mainstream organization in a particular field for guidance: that usually means the IDSA, however wrong it may be in its enunciations.
Then there are the third bunch of docs you consulted, 'experts on Lyme Disease'. Unless they are ILADS-type docs, then you probably got an IDSA-type diagnosis, that is, potentially missing something. That would be at odds with a diagnosis of 6 or 7 coinfections, however. It's a complicated picture.
In your situation, I would find an ILADS-type doc and take my family member and copies of all the tests and a history of symptoms and treatments for a second opinion. MRIs and CTs are not necessarily diagnostic of Lyme, but may be useful in some fashion (I'm NOT medically trained), so I'd be sure to have copies of those results reviewed also -- if possible, not just the conclusions the radiologist came to, but the actual visible results, because an LLMD might read them differently. I am aware that SPECT scans are sometimes used in diagnosing Lyme etc. (I had one myself), because it shows blood flow (perfusion) in the brain, and if that is impaired, it can be an indicator of Lyme.
It's possible that some of the symptoms are side effects of the treatment, but not necessarily. There can be a temporary worsening of symptoms during treatment (called a Herx reaction), due to the side effects of the meds killing the bacteria, but it could mean other things too. That's why an LLMD is important.
Final caveat: not all LLMDs are created equal. There are some that are more naturopathic, some that are hardcore traditional medicine, some that are a blend. Your first stab at an LLMD might not find you the right one -- tho it might! Just saying.
If you need help finding an LLMD, let us know. In your situation, I would do exactly what you are doing: questioning and taking action.
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