hi all

Had my llmd appointment this morning and got my test results. It is a bit confusing of a result but ultimately good news.

First, I have to say I have a very good llmd who really knows his stuff so I do trust what he says ( thank goodness because I think good llmds are far and few between).

So, weirdly my infectolab test results had a higher result than even before when I took one in May. When I took it in May I was VERY symptomatic and sick, and now I have practically no symptoms and have been treating for 5 and a 1/2 months. But the doctor said this is not a bad thing because ( this is confusing) it is probably the "memory cells" as opposed to the "fighter cells" that are showing up on the test. okay.

He said when I took the test back in May my immune system was probably suppressed from the sickness. And now the memory cells are- I don't even know how to explain it because I don't fully understand it- they are showing up on the test because my body has developed its own system to fight the lyme or something like that.  He said they see this sometimes in people who ARE getting better and it is not a bad thing. So that is the pretty good news.

He said we will base the continues treatment on my symptoms- and I told him I feel about 85% better.

My only symptom is I am having some clogged and sometimes hurt ears that go off and on through the day, but that has only been for a week and may just be like a cold or something. I also still have tinnitus. I sometimes get anxiety ( especially around crowds) but that may be post traumatic kind of thing and is not like the panic I had at the peak of things.

So he said when patients get to 85% better they typically continue the antibiotics for one more month and then switch to only herbals. I am now on antibiotics and herbals.

 He said I can start to wean the antibiotics by doing 5 days on 2 days off. He said it is even a gray area where if I feel like I really want to stop the antibiotics and just go with herbs I can, either now or in a few weeks. I see him again in a month.

So that is good news! I think I will do the 5 days on 2 days off for at least 2 weeks more ( perhaps all 4) just to be sure and then- finally- can stop them oh joy.

I really am feeling so much better.

and so it was confusing and weird that the test results were higher (it had been a 2+ in May and was a 4+ now) but comforting that the doctor right away said this is probably not a bad thing, and does not mean the infection is still active. So I feel that I am getting much better.

Again, if anyone who doesn't already know my protocol wants me to share it I am happy to do so. I think my llmd really knows his stuff.

Post Edited (Katebirch) : 10/1/2014 12:34:41 PM (GMT-6)

you will get there, girlie! I don't know about the meds you are taking because I didn't take those- so I don't know- all I know is the ones I took seemed to ( hopefully!) work- minocycline/doxycycline, plus plaquenil/malarone, and rifampin.   If you don't see enough progress with your treatment, perhaps you can mention that combo to your doctor.

Kate - the malarone - that's for babesia, isn't it? (anti-malarial)

So you did mino and then switched to doxy? Was rifampin near the end of treatment with mino or doxy?

Plaquenil - for cysts....or?

In some ways I am nervous to say- I am fine I am all better- because who really knows. I don't know what the future will bring. My ears still ache and I just got a mild headache and every time I feel anything wrong I worry if it is lyme. but I do think I am much better than I was.

KB,
That's such great news! Thank you SO much for coming back and posting good news! I know that many people start to feel better and don't bother to post anymore.

Is your LLMD from the Albany, NY area? I noticed that your treatment plan in very similar to mine, German Herbs and all! I thought, "what are all these odd named supplements they are putting me on"? (TBB, DTC....) Lol.

KB....

How long were you sick before you were diagnosed and treated? What were your symptoms? (I hope I'm not being too nosey)

Thanks!
Utah

Utahgal-- I got a tick bite September 2013. Did about 4 weeks of mild treatment. Started getting symptoms in January or so-- symptoms increased badly. Started seeing llmd in April.

My worse symptom was panic attacks and anxiety. I also had ear clogging, a film over my eyes making things blurry  ( I couldn''t read), fatigue ( exhausted) , generally scared and depressed all the time. Generally unwell feeling. Insomnia.

I didn't feel much beter in the first 6 weeks of treamtnet. After I started the rifampin I got worse for aobut a week- first really sick, then a panic attack that sent me to the ER and I never go to the ER (  I thought I was having an allergic reaction to the rifampin and that my tongue was swelling up). After a while the rifampin herx lessened. I think I noticed at three months into treatment I started to feel somewhat better. For the first three months progress was so slow and so discouraging.

I still didn't feel totally better by any means- maybe 45% at three months. Then thanks goodness we moved at that time from a mustybad smelling house to a clean new built house- yay- and also at three months I finally tread gluten free. And then things started to slowly improve. It is only in the last few weeks that I have felt more normal.

Treating lyme is a slow process.

Utahgal and Katebich,

How did the Herbal Supplements work for you? I do not have Lyme but I have one of the co-infections yersinia. My Dr wants to put me on TBB plus and APP plus. I'm already on plaquinal, and sulfasalazine because of athritist.

Yeah! You go girl! Love that you are on the mend so well in such a short time, that is great!

Xt....my supplements didn't do much. I didn't notice anything improve.

I hope KB gives an update soon. I'm curious to hear about her experience!

Hi guys, I am new to the forum, but received my (first) positive Lyme diagnosis in 2009 (even by CDC standards!) but they think i was likely infected a few years before that. I have been through it all including two rounds of a ceftriaxone picc line. I saw that some of you mentioned that you are taking the TBB plus supplement--any feedback/ reviews? Did you have any side effects or feel any different on it? Do you take it every day with out breaks or take it for a few weeks, then stop, then continue, like some of the other treatments?

Thank you in advance for any information!