LLMD update

I had my LLMD update what an amazing event. This may have been the last one but we will see.

My main symptom is feeling really toxic. So it's kind of hard to gauge if that is a symptom or not. But he said yes tinidazole can do that. So I'm now coming off the tinidazole. He is having me take grape fruit seed extract and lumbrokinase instead. I hope those two together will be as strong as tinidazole.

I also asked him a few questions:

When does Lyme become chronic?

It is chronic if someone has the infection for one year untreated. So be said my infection is still considered to be acute.

Can Lyme be sexually transmitted if someone successfully completes treatment and is symptom free?
He said no if it has been successfully treated and you are symptom free then you likely have no risk. He says though that for people that have had the infection for more than one year and left untreated. When they goto remission he suggests that the risk could potentially be there and people should be cautious about that.

I also asked him. How do we know when we are really symptom free for 2 months? He said we don't, and there comes a time when you just have to take a leap of faith in ending treatment. There is no done test in Lyme. This is quite relevant to me, because I really haven't had many Lyme symptoms, but I feel toxic, and to me that is a symptom preventing me from being well.

I also confirmed with him that yes since doxycycline puts Lyme into cyst forms that minocycline also can put them into cyst forms. Of course that's why we use cyst busters.

I also asked him about the "cured of Lyme in 60 days" protocol, he thinks this wouldn't work in 99% of people, but I still believe he cured his Lyme twice. That is so amazing.

Anyways I asked to change my medication but he suggested we just keep it the way we have it and for me to take off the tinidazole, it will help make me feel much better. He said it is a fabulous drug to get rid of Lyme but it does get to that point where it makes people feel toxic.

Or really the purified form? I have mine made in a compounding pharmacy with no fillers, just tinidazole and the usual capsules they come in.

I think tinidazole and flagyl(metronidazole) are generally a bit toxic though. There is a nitro group in these molecules meaning they could be quite reactive. Possibly damaging to tissues.

I agree with them. And I had the conversation with my LLND too, time to come off the tinidazole. 3 months on it is enough. I hope GSE and lumbrokinase will be effective and less toxic.

Lymepickle,
that's a good report! I hope it can be your last or one of the last appt.'s for you too!

I like your question, "how do we know when we're symptom free", b/c I wonder this for my son. (He's the one with lyme, not me.) I've wondered, how do I know if that tummy ache was lyme or the abx? etc. I liked the answer; that sometimes you don't know, and you take a leap of faith. I can see that.

Dr. Ann C., a well-known pediatric lyme dr., has said, regarding when knowing when kids may be ready to stop treatment, to ask them if the "bugs" are gone. And, that they just know. Maybe that's what your dr. means too; when you think you feel you are done, and are through it, maybe you just know and then... leap!
I asked my son last week if he thought his infection was gone? (that's what I call it with him, not bugs; I think that would creep him out since he's four and might imagine real bugs in him ;) anyway, I asked him that and he said "no." He's so close, but I do think he knows he's not "there" yet.

My son's llmd would like him to start tinidazole, and I'm going back and forth on it. He's so young and little, and I read about its toxicity, bad herxing, etc. I'm not sure about it for him; still considering. I'm looking into other ideas right now, and take note of the lumbrokinase. I've heard about the GSE, but not the lumbrokinase, so thanks for mentioning that.
Sometimes I think maybe we'll do the tinidazole for a short time (4-6 wks.; it would be pulsed, 2x/week) and play it by ear, but I don't know. More research over the next couple of days and then talking with our dr. about it next week probably.

anyway, again, glad you're at this point! and thanks for sharing how it went!

@lymebabe, flagyl is a prescription antibiotic cystbuster. :) I was on it but honestly I never noticed a difference. I think I only did 2/x a week for 4 weeks and that was it.

Lyme Pickle, this is really good news. It is a rough road but I did exactly what your dr said - I kinda just jumped off of everything. Which is terrifying but... after a bit of a rough patch the alternative drs got me through it was pretty good.

I hope you will know too!

lymepickle - so happy you are coming off the tindamax - hope this plan works for you!! GSE is excellent, so try to have faith!

your dr sounds like mine - I think they are right. Bc she said the same thing about sexual transmission.

keep us posted!!!

Thanks all! For your support! Unfortunately coming off the tinidazole didn't go as well as I had hoped. Symptoms came right in back pretty fast.

I do feel less toxic so really it is a trade off... I took 1 tind today just to knock the symptoms back and it seemed to work thankfully.

Revive--- yes I think I'm like. 95%... This is as good as it gets I'm guessing. I am only. 7 months post infection and was hoping to cure this thing but not so sure that is going to happen.

What herbal protocol do you recommend? I am thinking either Byron white A-L or beyond balance.