Hi, Deperate - I guess I'm coming from the other direction - I was in the past dx'd with late stage Lyme, got treated, felt better, started lately to fall back, and now it's all about OSA treatment...
Desperate_in_DM wrote:My BP is typically low, very low so I don't think that would be the problem.
Two years ago I was bitten by an insect, but I didn't see it. I had a horrible reaction and had very large oozing blisters on my leg the size of a softball. The initial "bite" was a black dot, then a red ring, then all the blistering, then another red ring. I also had red "streaks" going up my leg. One doctor thought it was a poisonous spider bite and treated me with antibios. Another doctor suspected it was a tick bite. Oh, I was in Northern Michigan when I got bitten. I was tested for Lyme and it was negative. Last year I still wondered if it was Lyme and asked to be tested yet again. Still negative.
Urmmm as much as I am a skeptic of the prevalence of chronic Lyme disease based on what I wen through in the past. It sounds to me that you had the classic bulseye rash! When did you get your tests? Were they after the antibiotics treatment? What kind? ELISA? Western Blot?
What kind of antibiotic did you use, and for what dose, and for how long, and how long after the initial rash did you start the treatment?
Of course, if you were to take a blood test for Lyme antibiodies, then it is possible that it will be negative (because of the treatment), but yet the grass-roots Lyme theory states that these spirochetes are somehow experts at evading the abx, and they will hide out in your tissue or whatever (I don't remember the details), but basically the grass-roots movement that is advocating agressive if not chronic and continuous abx treatment has the position that (a) ELISA and even Western Blot tests don't mean a think if they're negative - you could still have "chronic" Lyme, and (b) That, similarly to an HIV test, a positive ELISA needs to be comfirmed by a positive Western blot, and even then, then they want to go to some DNA type testing which I don't remember the name of.
Again, the above is more stating the frustration of my own interaction with the Lyme-doc community. The BIG difference is that I never had joint pains, only tiredness, lack of concentration, and constant nausea and fatigue. And out of two ELISAs and one Western Blot, the only positive lab results I had was from one of the two Elisa tests (curiously, the one from Stony Brook Labs), and even that one was equivacal.
Again, this is in crontrast to you, because you have joint pains and have had what seems to be a classic bullseye rash.
Desperate_In-DM wrote:
One of my many diagnoses I've received in the last 2 years was possible Lupus. I had a positive ANA on my blood test and a number of the general symptoms, but didn't have enough of the tell-tale symptoms of Lupus. My rheumatologist said he suspects I have Lupus, but until I developed one or two more of the telltale symptoms, he didn't want to "label" me with Lupus. For a long time my cranial pressure were attributed to Lupus and the inflammation associated with it. 10 months of medication for inflammation helped so that I could walk and actually lift my son, but did nothing for the pressure in my head. The rheumatologist told me to go back to the GP and start over.
GP thought sleep apnea. And so here I am....still with the painful pressure that makes it hard for me to concentrate and think clearly.
ETA: My complete list of symptoms I have been experiencing for over two years are: arthritis and inflammation of an unknown origin per Rheumatologidy, EXTREME fatigue (that isn't controlled by anti-fatigue meds), cranial pressure, depression (probably because I've felt ill for 2 years), minor anxiety (worse during certain activities), irritability and uncontrollable rage, non-refreshing sleep, feeling overwhelmed ALL the time, no sex drive, [/quote]
Hi Desperate, I was through the Lyme disease journey myself about 8 years ago (8 weeks IV antibiotics about a year oral. This was all based on vague symptoms like inability to conentrate, severe fatigue, minor aches and pains and numbess, and chronic nausea. Oh and one single equivocal slight negative from ELISA from Stony Brook, ans despite the regular lab's ELISA being negative as well as the Western Blot. Yeah, I did feel much better at times when I started the kind of antibiotics that cross the blood-brain barrier. However, the effect did not last, and later I read some papers about how certain abx in fact cause menntal stimulation be cause they cross into the brain as act as pychoactive drugs. In my case it made me wonder if my "improvement with treatment" was not simply due to the psychoative side-effects of the antibiotics.
BTW If you have a chronic Lyme case, the general theory is between day 10 to day 14 on antibiotics, your symptoms may get worse temporarily (The Jarishch/Herschimer reaction - which I'm quite sure I'm misspelling). I't becacause the antibiotics are killing the Lyme spirochetes and the dead shreads of those are triggering an auto-immune reaction which makes you symproms worse temporarilly, before you start feeling better.
I guess the take-way point that to this day I am still in doubt whether I ever really had "late Lyme disease" and not simply depression or who knows, maybe OSA. I have to admit that I did feel a lot better while I was taking the IV abx, but the benefit seemed to decline gradually after a few years off treatment,
to where I went on Wellbutrin and other such things to counteract it. (Oh and of course exercise, which is absolutely the best me for me!).
I was about to reply reflexively that the whole chronic Lyme thing is highly controversial, until I noticed that you seem to have had a classic Lyme rash. and that most researchers beleive that it is treatable with short rounds of abx except for only rare cases where it's been allowed to progress to late stage. But then the medical research concensus, the last time I check, is that symptoms at that late stage (years down the road for example), are not due to an active infection, but instead to some auto-immune type process that is better treated with antidepressents and the like.
Take what I say with a grain of salt (as well as what you read on the net). I haven't been on top of the latest Lyme news, and remember in my case I did not have joint pain or any memory of a bullseye rash, so that I have much more reason to be suspicious that it was a collusion between the "lyme" docs and the IV antibiotic services.
Now that being said, it _is_ possible for a Lyme test to come up false negative, especially an ELISA.
