I have been to several LLMDs who all say neurolyme (clin diagnosed) and am so ill can't function at all. Am currently taking 200 plaquenil, 500 bid biaxin and 1x/wk bicillin... then am supposed to add IV doxy in dec. but LLMD wanted me to have line put in in hospital due to my clot issues.
on a lark, i went to a DE IDSA MD whom I was told would tx a negative. So, he says 'neurolyme (my spect scan is a wreck), there are no good diag tests, would tx up to 3 mo with IV rocephin and would be willing to work with my LLMD on tx plan and that he would call her to talk it over...'
Background: I was hospitalized last month with a 'suspected TIA' - could not move R side of body or talk or write - work up was negative - told possibly psychogenic. LLMDs all think, could have been herx and pulled back on meds. bizarre.
Anyway, have possible clotting issue trying to work out before get line put in per LLMD. the ID docs wants to start line tomorrow - give IV rocephin 7 days per week, but LLMD was afraid to put line in and start IV meds yet as would put me in hospital again. This MD said to give me small dose of coumadin on tx and I would be ok and sooner is better for IV tx. Dr. B guidleines says rocephin 4 days per week... and ID doc want to do 7... And ID doc would work withr orals in conjunction with IV based on talk with LLMD...
So, I called LLMD to give them heads up that this ID doc was calling... Wondering how this will go. Have no idea what to do... But maybe, just maybe, could it be there there are some ID docs coming around?
At least, worst case scenario, if I don't go with ID doc and end up in hosptial again (fingers crossed that this wont happen) I can say local ID doc agrees lyme... Not sure that means anything but at least makes me feel better.
Sorry so long - Would love to hear thoughts on this...
thx, BR
Posted by psano2 (Member # 11711) on :
What does the "DE" before the IDSA stand for?
Anyway, I think you're lucky to find this ID doc, and I'd take advantage of the opportunity to do Rocephin 7 days a week. My personal opinion is that Lyme needs to be treated as aggressively as possible, as long as you can handle the herx.
You might get better insurance coverage with the ID doc's support.
Posted by bullrun (Member # 16748) on :
hiya,
tx a ton... DE = delaware... a state where everyone leaves to get lyme treated...
very unusual... and that he would work with an LLMD in NJ...
hmmmm...
BR
Posted by bullrun (Member # 16748) on :
up
Posted by lou (Member # 81) on :
I think if you follow the more aggressive ID doc ideas and you have a bad reaction, it will discourage the ID doc and lose him to lyme treatment. So, somehow it has got to made clear that herxheimer is a serious business as is gallbladder sludging from rocephin.
Hope he really is more open minded than he sounds at this point and will be willing to learn from more experienced docs. Is there some very tactful way to nudge him into a listening mode? Perhaps it will depend on how your LLMD approaches him, how tactful she is.
Did you know ILADS has a training program? This might be a possibility at some point.
Posted by Lymetoo (Member # 743) on :
I think some mainstream drs would like to be able to help us but are scared of losing their licenses. It happens.
Posted by bullrun (Member # 16748) on :
thx all...
ID doc is willing to 'work' with LLMD... And that he was going to call her. He even already got my insurance to agree to cover 1st month of rocephin (less than 24 hrs after I had seen him.
when I looked at Dr. B'd tx guidelines, I got real nervous as he recommended rocephin only 4x/wk... Plus orals (biaxin which I am already on).
So, we shall see how this plays out. Plus LLMD wanted doxy and ID says rocephin. will keep you posted.
I am definitely giong to follow an LLMD but just makes me feel good that there are ID docs out there who 'think lyme tests are inconclusive'...
thx again...
Posted by bullrun (Member # 16748) on :
thx also for tip on ILADS training program... I am curious to hear how the call went with ID MD and LLMD
ID doc said he went to DC mtg not too long ago and he has never been to a mtg where there is such controversy...
anyone know about what mtg he means?
I didn't want to ask too many questions...
Posted by seibertneurolyme (Member # 6416) on :
Actually I think the ID doc is probably recommending 2000 mg of rocephin 7 days per week -- that was the old standard for IDSA for neuro lyme. Dr B recommends 4000 mg 4 days per week.
I personally would do the 7 day dosing. When I did hubby's IV Rocephin years ago we actually did 2000 mg 6 days per week -- started with 250 mg per day and ramped up over several weeks. The docs trained me to do hubby's IV's.
There is no way hubby could have tolerated the herx from 4 grams of Rocephin. Even at 2 grams I had to stop almost every single IV 1 or 2 times to give him IV Ativan for tremors, myoclonus and seizure-like episodes.
I would be really nervous about using Coumadin. Heparin is a much safer option usually. And then there are other herbs and supplements which can help with coagulation problems.
Has anyone figured out if you have a genetic clotting issue or is it just really bad hypercoagulation due to infection?
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by lou (Member # 81) on :
The meeting he was talking about was the annual IDSA meeting in D.C. in October, which this year was combined with the microbiology folks.
Posted by northstar (Member # 7911) on :
quote: he has never been to a mtg where there is such controversy...
I thought this was revealing! To me, it implies that there are numerous doctors and researchers who are disagreeing with IDSA guidelines and summaries. I dont know if any ILADS physicians were "allowed", so not all the disagreers could have been ILADS.
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