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Posted 3/25/2017 2:51 PM (GMT -5)
It has been a year of treatment now and my llnd wanted to reassess as he thinks im not improving like i should. I had 2 months last year that were really good while on clindamycin, quinine and crypto but then he had me stop everything for a month and i went downhill fast. So we started again but never went back to those drugs and i never got back to where i was.

Anyway he had me do the lyme elispot and cd57 at armin labs in germany and igm and igg at igenex again. I havent had my apt to go over the results yet but im sure the results arent gonna be in my favor. Ill post before and after igenex im looking for opinions on what i should do next as i think my treatment will end based on these results. My mind is back but physically i feel like im 80-90 years old not 38 and there are other symptoms still lingering.

igenex results from 2015
ill just list bands that showed anything

igm 18+/30+/39ind/41++/58++/83-93+

igg 18+/28+/31+/34ind/39ind/41+++/58+

did the epitope test on the igg and it was positive

igenex results from last month

igm 30+/41++/58++/83-93+

igg 31ind/41++/58+

armin labs 1 si/1si/0si for the elispot on the haematology where were 5 things out of range dont know if they have any signifigance or not the items that were out of range were leucocytes/hematocrit/mcv/mchc/basoph. granulocytes

and lastely the cd57 i am in the gray area at 113 and the only thing out of range on that test was t cells cd3+(absolute) was low not sure what that means either.

His reasoning for these tests he told me was to see if it was an active infection or not and unless im missing something i dont think these results will do it. I need to prepare myself for this next apt but not sure where to go with it.
Posted 3/25/2017 3:13 PM (GMT -5)
I think just about everyone on here would agree that as long as you have symptoms, you have an active infection going on. Exactly what is causing the hold up in your getting better is the question.

I'm hoping others here will have some better input for you.
Posted 3/25/2017 5:18 PM (GMT -5)
Bumping for more comments.
Posted 3/25/2017 5:42 PM (GMT -5)
I would agree with julymorning.

Were you symptom free for the two months on that abx combo, is that why treatment stopped?

I know my doc said that I should be treating for two months AFTER the resolution of ALL symptoms. She diagnosed me clinically and I never did get a blood test (I had an EM rash and what she described as 'classic symptoms' to begin with ie flu like etc etc).Her reasoning for not testing was that the symptoms have to resolve for the infection to have gone. I think this is a pretty standard consideration of Lyme doctors. Please correct me if I am wrong.

I have been treating for about two years now.
Posted 3/25/2017 6:07 PM (GMT -5)
yes for at least 1 month i was pretty much symptom free no pain had energy to do stuff again a few very minor things like intense itching for 10mins sometimes that would be totally random you didnt have to scratch but you had to hold pressure on the part never lasted very long but you couldnt ignore it. Id have to stop doing w/e i was doing and either itch or put pressure. I remember kinda being "bored". wish i could get back to that....

At the beginning of the babs treatment he told me it would be min 4-5 months(rbc life) but after 3 months he took me off cause i was doing well. When i went back on my feet were killing me so he went after bart and added artemisinin and artemsia for babs. Just been downhill ever since.

Its weird i get all the classical symptoms of bart more often then any.I get babs classical stuff once in a while except the 2 big herxs i had where i had alot of the classical babs symptoms. So it seems hes more eager to go after the bart but i just dont seem to progress on that protocol.

I really want to try the clindamycin/ quinine combo again but with these latest results i dunno whats going to happen. I live in canada and getting treatment here is horrible. I think hes looking for a positive test to qualify me for further treatment. Im not sure if its something he requires to cover his ass or what. He specializes in lyme so i would hope he knows the accuracy of these tests.

Not sure why but the everyone says the tests are not to diagnose but to help with the diagnoses of lyme and that it should be clinical, but everyone wants to see the positive test. I think they are all scared of losing their practice... Ive got all kinda of pics of bumps on my feet, bart scratch marks and other weird things that no one else can tell me what they are from but it still comes down to testing...

as you can see im getting frustrated. maybe im jumping to conclusions as i havent had the apt yet but im dreading it.
Posted 3/25/2017 6:23 PM (GMT -5)
It's crazy when doctors rely on testing more than clinical symptoms to treat or diagnose. Testing just isn't good enough for that.

I would push for a reason why you aren't going back to the protocol that had you feeling good - it was obviously working well for you. It would be different if you had gone back to it and it didn't help the second time. And, the fact that he first told you that you would be on that protocol for 4 months, then to pull you off of it before that (before the full life cycle of the RBC) - seems they may not be remembering when you actually started that protocol - or something else happened that they aren't telling you about - like office politics....

Seems like you know which infections you still need to treat though. I would encourage you to really question your doctor about getting back to the treatments that work for you, and to concentrate on Bart and Babs treatment.

The testing should always show antibody production to Lyme because that's how the body keeps it under control - the immune system keeps it at low levels, and so is making antibodies to the bacteria as it attacks and kills it. And that is why testing other than for the original diagnosis is just a waste of money and time -and blood!
Posted 3/25/2017 6:25 PM (GMT -5)
I totally understand your frustration! I was lucky my doc was only interested in my symtoms but yep, I think it is for bottom covering purposes that they want the tests. Not that that helps unfortunately.

Just my opinion but it sounds like those minor symptoms suggest the infection was just lingering and not totally gone?

I found that my bart symptoms didn't really rear up until after I felt like the lyme symptoms were improving and I have to admit that was a blow as I felt like I had relapsed into something worse. It is the symptoms that I think are attributable to bart that seem to be the most stubborn to shift too.

Is your doc relying on bart/babs tests to continue treatment for those?
Posted 3/25/2017 6:47 PM (GMT -5)
No on the first apt he said those tests were not reliable that he treats those based on symptoms(that and it was a waste of money). He only wanted the lyme tests for re-assurance.
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