I have been diagnosed with Lyme (CDC positive test results) since May of 2005. Here is the treatment I have received with the results I have noticed.
6 weeks - Omnicef / Biaxin / Tindamax - Not any big improvement but slight improvement
6 weeks - Cats Claw / Art - not real big change her either
4 weeks - Ketek - no real change with this either
4 weeks - Diflucan - got much worse during this time
8 weeks - Doxy / Flagyl - a lot of herxing but not much improvement ... yet
Now he wants me to do 4 weeks of cholestyramine.
From what I have learned via this site and other reading ABX need to taken for long term and as you can see I have only had ABX for the longest for 8 weeks.
I just don,t see how constatnly going on and off treatment before getting better is helping at all.
I have had this for a over a year and want to have some improvement. I don['t know if this "LLMD" is getting me on that track.
The problem is his is close and I really don;t know of anyone else near me that might be able to help.
I am afraid that going of the ABX is going to push my treatment back again. I just want to hit this thing with all guns blazing.
I have been tested for co-infections and all were negative. My symptoms are very in line with Babs but he says that if I had Babs that Cats Calw and Art treatment would have made me better. So he doesn't think that is it.
I am sick of all holostic crap and supplements I keep getting from him, but I juwst don't know where else to turn.
Let me know your opinions of the treatment and if I should stay the course or not.
Brewer
Posted by Aniek (Member # 5374) on :
Dr. B said at ILADS that he tries to keep people on each abx for at least 3 months.
I feel like I remember he said the minimum is 6 weeks, to make sure you are on it long enough to hit the 4 week Lyme cycle. And then he might switch if there was no reaction at all. But he kept stressing 3 months.
The Diflucan could mean one of two things. You had a yeast herx, that's why you got worse. Or you started getting worse because you were off abx. How quickly did things turn on Diflucan?
Some supplements can be very helpful. I'm on a lot of nutritional support supplements, targeted to my deficiencies. I found a doctor who specialized in this because I felt my body was weakened and needed it. I also switched to an herb to control yeast, because the antifungal meds weren't working.
Posted by Vermont_Lymie (Member # 9780) on :
Hi Brewer,
While no doctor myself, I can tell you that the llmd that I have seen since July would keep people on antibiotics longer than 6 weeks.
For example, if you actually saw some improvement on the first combo --Omnicef/Biaxin/Tindamax -- he would probably keep you on that much longer, for months, rather than switch after 6 weeks.
I have only been treated for lyme since July, and have learned that 6 weeks is a relatively short timeframe for treatment of latestage, or chronic, lyme. This (treatment) is all going to take much longer than you or I would have hoped.
My best advice is to invest the money and time, though it can be difficult, to speak with another llmd, the best one that you can get referred to. Important to have some confidence in your doctor.
Meantime, having any llmd is better than none, so stick with your current doctor until the time you have seen another that you want to work with.
Vitamins and supplements have been pretty helpful to me and others, and it is important to read and learn as much as possible about what nutritional aspects might help.
Best wishes for your health, VL
Posted by lymie tony z (Member # 5130) on :
Sounds to me that your llmd is hunting and pecking with different abx regimens....
Did you ever get exacerbated symptoms on any of the meds or supps?
Because you never had a Jarosch-Herxheimer reaction to any of the meds so far/cept diflucan(which is probably a fungal reaction)...
He may be using the dartboard technique to hone in on an abx that will have the desired aforementioned "HERX".
OR
HE'S a DUCK in LLMD's CLOTHING>>>>>>zman
Posted by WildCondor (Member # 434) on :
The times seem short, like he just switched you from one to another rather fast without giving the abx a chance. Are you ssure your doc knows what he is doing? Seems fishy.
Posted by bettyg (Member # 6147) on :
i've had $1,000 of supplements and rx compounded pharmacy meds since july; none have made me any better.
in fact, i feel the worst i've ever felt of my 36 yrs. of chronic lyme, and of the 28 months of lyme treatment meds.
supplements have zapped me of ALL ENERGY leaving me with 24/7 fatigue of napping 3-6 day/night!
please send me a private message, pm, icon with 2 people standing togehter, and list you drs. full name, city/state.
i'll check it against the 2 different LLMD nationwide lists i have to see IF they are on good llmd list or not. thanks! Posted by brewer (Member # 8706) on :
Thanks for all the responses.
I am taking this Chlestrymanine stuff now and my Lyme symptoms are really getting worse again.
Everytime I have gone off the ABX my Lyme seems to come back at me hard. That is why I don't understand why I would not want to stay on the ABX treatment for longer than 8 weeks at a time.
I just feel like after 8 months with this Dr I would notive some improvement or change and I have not.
Are there any other LLMD in the Wisconsin area? I have considered going to Dr. C in MS, but that would be a really long trip and it would have to be worth it to go. I don't know if I am convinced that this trip would be worth it.
Thanks again
Brewer
Posted by Kawai (Member # 10005) on :
Wisconsin, you say? I see a LLMD in Wisconsin as well and this sounds like the exact treatment my LLMD has put me through too (along with a ton of supplements).
I started seeing him in August and am getting pretty discouraged, especially since he said we'd be treating this aggressively. But I feel fortunate that he is willing to treat me, plan to continue, and hopefully we'll get this figured out soon.
I was going to give this until Christmas to see an improvement before I gave up, but he just recently started me back on the same first 3 antibiotics for 8 weeks so I wait again.
Posted by bettyg (Member # 6147) on :
brewer, i sent you a reply back on what you sent me today.
looks like brewer/kawai need to talk by private message.
now brewer, look at kawai's post; to the right of their name is 2nd icon with 2 people standing there! it's shown on actual posts only
not in the private message i sent you; that's why you couldn't find it ok!
![[Big Grin]](biggrin.gif)