Lyme Disease Support Group

That said, my understanding is very different- that it can take years to get over this. He's saying that I must now have mold in my house causing my symptoms, as my symptoms shouldn't come back on me as quickly as they do when I stop treatment, which can be within 24 hours.

Is this anyone else's experience? I thought I was pretty normal in that when I stopped treatment, symptoms would quickly return, but I'm told that's NOT typical, and that I need to start looking into other causes.

Is this correct? Does anyone else have Lyme symptoms and exhibit the same quick return of symptoms that I do, or should I begin to look at other things that might be causing my problems?

Thanks in advance for any insight,

Were you tested and treated for coinfections?

You probably need to seriously consider getting a new LLMD. It doesn't sound like he follows the ILADS guidelines for treatment.

My LLMD and my local doctor who did my testing both acknowledge that SLOW and STEADY will win the race.

In addition, many, many will agree that Lyme cannot be 'cured' or eradicated 100%, and that relapses are always possible. If you have symptoms immediately after stopping abx, then it sure doesn't sound like you're done with treatment.

How long have you been treating? What types of things have you tried? What were your main symptoms and how long do you think you had the infection present prior to actual diagnosis?

Glitchy

I first came down with Lyme on Labor Day (we had a family get-together where I was barely able to function, so the memory is still very clear about that day), and started treatment within a few weeks of that, so late September to now would be about right, making it approximately four months total.

I started out on ABX- doxy, Azithromycin, and Amoxicillin. Then, I moved to the Klinghardt cocktail which makes me feel great while I'm on it, but if I stop even for a little while, I start to go downhill pretty quickly.

This is where my LLMD says I shouldn't be experiencing this- that Lyme doesn't come back that quickly, and that it must be something else, likely mold. I've ran some inexpensive mold tests in my house (bought at Home Depot), but nothing has shown up as of yet.

That said, my basement does smell awfully musty.

Any insight into what I should be thinking about now?

No one can say with any certainty when a person will heal from the unpredictable disease. When you are totally symptom free you continue for another two to four months just to be safe. Even then there's not guarantee you are over it.

My wife lapsed three times before she finally got well. It takes time.

Gary

I hate when people are putting a time-line to my illness it makes me stress out.

It will take the time it will take period and I expect people including my LLMD to support me in the meanwhile....

He "fired" another woman I know because she wasn't getting better & he didn't think it was lyme, well it is & she found someone else to treat her & she also has babs & he was treating her for bart... human, yep... we all are but that is the beauty of America (as of yet) we are free to find another one!

I will go as far as this will take us & then keep pushing on.

I have to say that I feel like a baby compared to a lot of the people here who have been treating so much longer. I have been on abx for 8 months now & I had to stop all meds due to another issue & I could tell with in 24-48 hrs I was feeling "crappy" again!

My daughter for the stomach bug going around & I was told to stop her a-bart & amox. & with in 2 days she had pains & headaches, & her foot was hurting bad, she is on 3 months of treatment.

Has he checked you for co infections? Is he saying maybe mold is interfering with the Lyme treatment & you need to take care of both?

I've primarily experienced headaches, bodyaches, pains in my legs, light sensitivity and a tingling/vibration sensation in my heels amongst other things. I occasionally have swollen glands in my arm and a numbness in my fingers as well. I also experienced tremendous brain fog which is for the most part gone now.

If I relapse, it always starts with a headache, followed by foot/heel pains, followed by gland swelling. I haven't allowed it to go further than that, as I pretty much couldn't take it anymore, and did whatever I had to do to get back on full treatment.

The odd thing is, I feel great when I'm on the Klinghardt cocktail- absolutely great- in fact, better than I've felt in a very long time, but the minute I go off of it, everything returns in spades.

I was beginngin to think I was unusual in this regard, but now that I'm reading here, I realize that I'm not, which makes me a feel a heck of a lot better.

Thanks for the responses!!