This yr, I tested CDC+ for Lyme from IGeneX with evidence of Erlichiosis. CD57 is 30. I've been sick for over 15 yrs.
I have been on doxy for about 5 month, rifampin X 2 months, cholestyramine and activated charcoal for about 1 1/2 months.
In addition, I have taken 7 weekly biciillin shots (haven't increased to more times per week because I have felt so poorly, so that the LLMD thought I should not increase the frequency of the shots just yet).
I am most concerned that I am not on anything for the cyst form of Lyme, like Flagyl or tindamax. I am worried that I am just sending the BB into the cyst forms, and therefore not getting rid of anything.
I have asked the LLMD twice about this, but she says I'm just pushing too fast. Because I don't feel well (herx), she wants to go slower. She said that we will eventually get to the cyst-busters. I wonder if treating with bicillin without cyst-busters at the same time is worth anything, or is it even more harmful.
I wanted to try bicillin because I wanted to try to avoid iv's. Now I'm not sure if bicillin without a cyst-buster is worth it, and I don't know if I should continue. The LLMD is going to try to work up to bicillin 3X's /week, when I can tolerate it.
I also don't know if I should seek out an LLMD who would give me iv's.
Any comments would be appreciated.
Thanx 14k
Posted by Haley (Member # 22008) on :
I've wondered this myself.
I have been treating for about 8 months with only 2 weks of Flagyl in there somewhere. I now am on Mepron and Zith. I'm feeling pretty good. Better than I have felt in a while.
I don't know if the Mepron is causing the bug to go into cyst form so therefore I am feeling good or if it is killing something that we were not killing before. I have a hunch that the minute I go off of this Mepron I'll go down hill.
I see my LLMD in 2 weeks. I will ask her if we can do some Tindamax or something similar with my present protocol. I'll probabaly feel much worse but maybe it's worth it.
I'm interested to see what people have to say about this.
Posted by TF (Member # 14183) on :
In my experience and the lyme docs I've talked to, most people can get rid of lyme without IVs. Burrascano says this. Most lyme docs agree.
I would give orals and IM (what you are now doing--shots) a much longer try before seeking out a doc just to get IV medication.
As those who have had it say, IV is not the magic bullet, by any means. And, it comes with very serious risks--like infection in the line which can kill rapidly, requiring you to know the signs and get to the ER quickly. Why do you want to take that on at this stage?
You may want to read in the Burrascano lyme treatment guidelines the patients that he says require IV therapy and see if that is a description of your case.
I agree with your lyme doc that you haven't taken in enough bicillin yet to be worried about converting lyme to cysts. Also, if you are having difficulty with one injection a week, you are not ready to add a cyst buster to the mix.
I don't think you need a cyst buster til you have gotten to a good dose of bicillin and are tolerating it well, and have done it for some time.
I had undiagnosed lyme disease for 10 years. I got to a doc who followed the Burrascano protocol, took all oral meds, and got rid of lyme, babesiosis, and bartonella.
All of my friends got rid of these 3 diseases on just orals meds also.
It has been 5 years since I completed my treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
It takes patience to treat this disease.
I had poor lyme treatment for 2 years--doc had me on amoxicillin (high dose, with probinecid) for 2 years straight. Then, I wised up and switched to the Burrascano type doc. He told me the 2 years of amoxi had converted all my lyme to the cyst form. So, he gave me 2 months of flagyl along with 1 month of amoxi and that was the end of my lyme treatment! Then, he moved on to treating bart and babs.
So, that may give you some idea of how quickly you can get rid of the cyst form of lyme, even after a long time on regular antibiotics. So, forming cysts is no big deal in my book.
In fact, I felt virtually symptom-free converting all my lyme to cysts over that time, so that was a pretty good time!
Haley, mepron kills babesiosis, not lyme. And, you need to take zith with the mepron to kill the babs. So, cysts are not an issue for you either, in my opinion.
Forming cysts is just not a big deal. At some point, near the end of lyme treatment, you treat them and that is it.
Posted by janice victorov (Member # 22937) on :
TF, wow, you seem so knowledgable on lyme and co. I guess that comes from having lyme and getting well. Sometimes I think that we the patients have more knolwedge than some of the LLMDs do.
Janice
Posted by Haley (Member # 22008) on :
Thanks TF for the insight.
I do realize that Mepron treats Babesia. I still sometimes have a sense that Babs or whatever I'm treating is going into a cyst form.
On Mepron, I just feel better and seem to keep feeling better. Now, I'm not complaining.
Part of me thinks when there is no herx and one starts feeling better something is going into cyst form.
The test is when you go off the drug. If it comes back right away. It was not killed, hence my cyst form theory.
When you treated you killed the cysts first with DR. S.. Correct?
Posted by Dawn in VA (Member # 9693) on :
I would definitely consider combo treatment. I firmly believe in using macrolide + cyst buster + cephalasporin/penicillin simultaneously. With proper detox, too. Just my two pence.
Posted by MariaA (Member # 9128) on :
babesia doesn't have a cyst form.
Posted by TF (Member # 14183) on :
I treated the spirochete form of lyme for 2 years. Then, I switched docs and the new doc treated both the spirochete and cyst forms together. He gave me amoxi and flagyl together.
That is because I had converted all my lyme to the cyst form from 2 years of straight amoxi. The 2 years of straight amoxi was a waste of time, in other words.
So, I was overdue to treat the cyst form of lyme. You treat the cyst form and the spirochete form together so that if the lyme tries to convert out of the cyst form (due to the flagyl), the other med will still kill it (amoxi kills it in spirochete form).
This is how you treat lyme when the doc believes it is nearly time for lyme treatment to end.
Haley, if your illness comes right back when you stop treating, you have either had:
-- inadequate treatment (meds at too low a dose, wrong combos, no combos, etc.),
--stopped treatment too soon (so immune system cannot handle remaining germs--there are too many of them),
--have an untreated coinfection (that allows all the other infections to return because the coinfection still has the immune system compromised),
--or you have not sufficiently strengthened your immune system.
Burrascano has patients do a 1 hour weight lifting routine every other day to boost the immune system. Other boosts include raw garlic twice per day and no drinking or smoking.
Lyme and coinfections compromise your immune system, just like AIDS (per my lyme doc). So, you have to strengthen the immune system if you can ever hope to get rid of these diseases.
THe antibiotics get rid of the vast majority of the germs, but the immune system has to take care of those that remain, or the patient will just continue to relapse.
So, if you have not begun the Burrascano exercise program, I suggest you try that.
Both my doc and another Burrascano type doc I know tell all their patients "you will NEVER get well unless you do the Burrascano exercise program."
That's what my doc told me. Read Burrascano's rationale for the exercise being weight lifting and for the requirement that it last 1 hour every other day. It is very interesting.
For those who continue to relapse, I always suggest the weight lifting, as it was told to me.
Hope this brings you success.
Also, I second what MariaA said above. It is only lyme disease that has been said to have a cyst form--not babs or bart. Thank goodness!
Posted by Haley (Member # 22008) on :
Thanks TF. This is really good information.
The fact is I would start feeling better and then then when I would would go onto another treatment. The symptoms would return within days.
I will stay on the Mepron and Zith for a while and if my LLMD agrees, I'll throw in a cyst buster.
I have Dr. B's guidlines on my coffee table and I agree 100% with the exercise guidelines. I am attempting 1/2 hour every other day. 1 hour seems a bit much for now.
It's good to know that Babs doesn't have a cyst form because it seems to be dying then!! I know that strep has a cyst form so I thought maybe Babs does.
I'm trying not to get my hopes up as I have gone backwards so many times. Thanks for the tips.
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