Please help!! My head is spinning with the inconsistent useages of this drug by the various people on this board.
Inquiry One: My LLMD has had me on alternating days of zith & rifampin for four months. So I guess he thinks pulsing is fine AND said that you should not take zith & rifampin on the SAME day.
His explanation was technical and I didn't understand...but I decided to trust him as he's and ILADS LLMD. (sigh)
Inquiry Two: Now he wants to take Zith OUT of the equation, have me on daily Rifampin. I told him my concern because everywhere I've read, Rifampin MUST be taken with another abx so as not to become resistant.
Inquiry Three: He said that the Cumanda I'm taking COUNTS as another abx but I don't buy that.
Final Inquiry: "Everyone" keeps saying that if you stop using Rifampin even for just a week (or in a recent post 12 hours from Sweden...YIKES!), you'll grow resistant.
What is the truth with this drug and why is Rifampin of particular vulnerablity to resistance? What is the REAL cut-off resistance time that when you go back on it, you get "flu- like" symptoms?
I'm BEGGING any Rifampin users (combos/pulsing/plain, etc) to tell me their protocol for Rifampin.
I'm starting to feel like the discrepancies for the Bart treatment, regarding Rifampin, is worse than the disease itself.
SO gratefully,
Posted by Clarissa (Member # 4715) on :
Sorry about the two similar posts but Stacyb and I are both being treated for Bart and are concerned with the same issues/discrepancies/inconsistent information.
Please just post your answers on this thread so you don't have to double your answers.
Sorry, in advanced...but we're just trying to figure out the truth to the Rifampin "myths".
Gratefully!!
Posted by Clarissa (Member # 4715) on :
JillE posted in another thread:
Rifampin is one of those drugs that can cause a physiological reaction that if you stop it and restart, or use it intermittently, the body can have a serious reaction - ranging from flu-like symptoms to far worse. This has nothing to do with Bartonella. This is something specific to Rifampin that is talked about in the Physician's Desk Reference.
So in addition to allowing Bart to become resistant, stopping Rifampin for a prolonged period could cause your body to make you sick when you resume it, or you may have to resume at a lower dose.
However, I had to stop Rifampin briefly after being on it more than one year (I only made it to half a dose, so I never was on the 600 mg). My LLMD said I can only go off it six days maximum, then must restart. I followed those directions and was able to resume it with no problems. My LLMD was surprised that I could resume it so easily.
Posted by Clarissa (Member # 4715) on :
NellyPointis posted:
I have always read that rifampicin should NOT be pulsed not even interrupted as many bugs will grow resistant
Nelly
Posted by Clarissa (Member # 4715) on :
Disturbedme Posted:
Well, when I was on Rifampin, I took it with Doxy on weekdays.
And Biaxin and Doxy on weekends. Which not sure if that's what you'd call pulsing, but that's what my LLMD had me on for 3-ish months to treat Bart (and lyme, I think).
Posted by Clarissa (Member # 4715) on :
Swesish Lyme Sufferer posted:
Zithro stays in the body for a long time so thatone is fine pulsing, but about rifampin I am not so sure, as it is almost out of the body after 12h. My doc tells me to take it every 12h. And never alone, always in combo, now with zith 6 days in a row and one day pause. That makes VERY high bloodlevels of zithro but I can manage.
But I really wonder about pulsing rif. I would like to if it is possible. My doc thinks no. But I cannot imagine your doc beeing wrong. Maybe he knows something mine does not?
Posted by Clarissa (Member # 4715) on :
CD57 posted:
Rifampin 600 mg/day Mino 100 mg/day Doxy 400 mg/day my LLMD called this "an elegant combo"..?
Posted by Clarissa (Member # 4715) on :
Treepatrol Posted:
Iam on minocin and rifampin. doxy is said to react with rifampin by doxy losing its blood levels.
Posted by Clarissa (Member # 4715) on :
ANYONE NOTICING THE INCONSISTENCIES IN THESE POSTS?
argh!
Posted by Clarissa (Member # 4715) on :
Vermont Lymie posted:
If you were taking the rifampin with another abx, that is supposed to handle the resistance issue.
Posted by Clarissa (Member # 4715) on :
CD57 posted:
My LLMD said that bart can become resistant to Rifampin in three days.....that's why it's always combined with something else. She said that it doesn't matter WHAT you combine Rifampin with, as long as there's something....zith/doxy/mino, whatever.
Sounds like you're in good shape!
Posted by Clarissa (Member # 4715) on :
Anneke posted:
One more thing.. It interacts with Diflucan big time. You can NOT take it at the same time. And, the half-life of Rifampin is long, so you can't just take a Diflucan the day after taking Rifampin.
Posted by Clarissa (Member # 4715) on :
So Swedidh Lyme Sufferer and Anneke's posts completely oppose each other concerning the half-life of Rifampin.
Anyone getting confused, yet?
Posted by Clarissa (Member # 4715) on :
Don't Like Liver Posted:
Do you mean if you have to take a day or three off the Rifampin you have a higher/high risk of getting low platelets? Is there a reference to this anywhere I can read?
Unfortunately, "all" the LLMDs have different opinions. I am rx'd Ceftin and Rifampin; my LLMD is an ILADS doc who's treated Lyme for over 20 years and has not mentioned that Rifampin has to be taken with a Tetracycline or Macrolide. Obviously, he doesn't think that is a problem. Do you have any references to the Tetracycline/Rifampin statement? I'd like to know based on what your LLMD says this, if possible.
Posted by Clarissa (Member # 4715) on :
Cobweb Posted (and it sounds like she was not takin an additional abx):
I'm taking Rifampin-for Bartonella.
600mg in the morning on an empty stomach.
I get a dull headache and fatigue. I believe this is due to my body's adjustment to the drug and not a herx.
Cobby
Posted by Clarissa (Member # 4715) on :
Tosho:
Thanks for your helpful information. So, based on your information, I COULD take Zith & Rifampin on the SAME DAY?
Am I risking resistance by alternating days or is this subjective based on all of the different posts I've re-posted?
Plus, I'm getting noticeably better. Wouldn't a resistance cause me to plateau?
Best and THANKS!!!
Posted by Clarissa (Member # 4715) on :
Roro Posted (and this is a pro pulsing example):
am on the same thing. I take the rifampin M-F, zithro on the weekend and doxy & nystatin all the time.
i didn't notice herx the first week on the 300, but after the 600 I did. I usually start feeling bad the next day - swollen glands, muscle aches, flu-like feeling.
it also decreases the effect of my morphine so I have more pain and have to take more vicodin.
the first few weeks the herx was bad, lasted from tues to sat. now it only lasts a couple days and is not as severe.
my dr says when I stop having the herx, its time to come off and start treting the babs.
Posted by njgirl14 (Member # 14174) on :
I am concerned now because I am taking Rifampin by itself.
I am on IV Rocephin but have stopped for a week because of yeast. Was this the 2nd abx although no one else mentioned Rocephin. I told my LLMD I stopped the IV and she said go back on to every other day but said nothing about the Rifampin.
Should I be taking another abx with Rifampin, does Rocephin count as a compatable #2 abx, and do I have a problem now that I have been off IV for a week?
Posted by Clarissa (Member # 4715) on :
Patrick posted (and this goes against the resistance argument):
I was on it on three seperate occasions for six weeks each.
The first time I was miserable the entire time. The second and third time it really didn't bother me or seem to do much at all.
It helped tremendously with clearing the brain fog though the first time around. I am having a relapse of some sort over the last few weeks but thats one thing that hasn't come back.
Posted by Clarissa (Member # 4715) on :
Tosho,
Thanks, again! It's all so confusing. I will definitely ask my LLMD before treating myself with the meds in my cabinet.
I appreciate you taking the time to break it down into such great detail.
You're a gem!
Posted by Clarissa (Member # 4715) on :
njgirl14:
I personally don't have the answer for you but your question is the EXACT reason why I'm do this posts as there are so many conflicting direction of useage of Rifampin.
Hopefully more people will reply because my head is spinning, for sure!
Posted by 1Bitten2XShy (Member # 12280) on :
I am just to start the wonderful world of Rifampin treatment, 300 MG 2 x daily for 2 weeks, however the kicker is I ALSO have to take Levaquin 500MG daily along with it.
I have not seen this combo done before, and am a tad confused right along with Clarissa here...geezz.
Also when this is done, I start the 70 day Diflucan protocol, I know not to take with these abx's, but they did not mention about waiting a certain time after the 2 weeks before I start the Diflucan up.
Confusing as he77.
Clarissa- Are you seeing a LLMD here in Florida?
Posted by Clarissa (Member # 4715) on :
Rifampin & Levaquin? Okay that's a first.
yes, I'm seeing an LLMD in FL. PM if you want name.
I just vented to my Father (a retired doctor) and he said NO two doctors agree on treatments, especially when it comes to complicated surgeries and certainly TBD's.
He told me to take everything with a grain of salt and to trust my gut. There are just too many different opinions and even if we got our LLMD's in one room, I think the debate would continue for days...(sigh).
Posted by 1Bitten2XShy (Member # 12280) on :
Oh I so hear ya, however I would feel better if I heard from others that have done the Lev & Rif combo.
I did PM you Posted by Dancer (Member # 11039) on :
Rifampin 600mg once a day + minocycline 100mg 2x a day.
The manufacturer's insert with my Rifampin says:
In healthy adults, the mean biological half-life of rifampin in serum average 3.35 +/- 0.66 hours after a 600mg oral dose, with increases up to 5.08 +/- 2.45 hours reported after a 900 mg dose. With repeated administration, the half-life decreases and reaches averages values of approximately 2 to 3 hours.
Posted by Andie333 (Member # 7370) on :
I take rifampin two times a day (3 of them), along with ceftin.
I am also pulsing tindimax. My LLMD didn't want me taking tindi and rifampin together, so when I'm taking the tindi, I don't take the rifampin.
Resuming it after those 4 days doesn't seem to be a problem for me.
Andie
Posted by Clarissa (Member # 4715) on :
Dancer (or someone on the board): Thanks for that info!! Can you translate in laymen terms for me what that means? How long does Rifampin stay in the body after taking 600mg? Sorry, I've ALWAYS been horrible in math and science.
Andie: So you take 3 days off of Rifampin when you're taking Tindi? So that would oppose the whole "you have to take Rifampin every day theory. right?"
Posted by Clarissa (Member # 4715) on :
One other question:
Besides Tosho and Swedish Suferrer, is there anyone else on the board who takes Zith & Rifampin on the SAME DAYS?
Bless you all! Maybe I'll be able to sleep peacefully tonight.
Posted by psano2 (Member # 11711) on :
I'm currently taking:
Rifampin 600mg daily Zithromycin 500mg daily Doxycycline 100mg 3x/day Plaquenil 500mg 2x/day Artemesia 1600mg 2x/day x 5 days, then off for 5 days.
I've been taking Rifampin continuously since May 2007. I've been taking Zithromycin continuously since? last fall (don't remember the exact month, but it's been at least 3-4 months). I've been taking Doxycycline since early last fall, maybe September. Plaquenil and Artemesia were just added a month ago for Babesia. Artemesia is the only thing I pulse.
I've done very well on this combo (Rifampin, Azithromycin, and Doxycycline). I think the Babesia symptoms started coming out after my Bart load started getting low. So far the Plaquenil and Art are starting to eliminate the Babesia symptoms I was experiencing.
I was on Bicillin LA for a long time (> 1 year) and a number of other anti Borrelia drugs from Sept 2005 til Feb 2008.
Hope this helps.
Posted by Clarissa (Member # 4715) on :
Thank you Psano2. My LLMD was literally flipping through a book trying to remember why I couldn't take zith & Rifampin on the same days (sigh) and he came up with "no" but with no logical reason.
I, too have Babs, and would like to add in the artemisae and kill two birds with one stone.
Now, he wants me to take out the Zith, take daily Rifampin and I said, "but I have to have another abx to keep rifampin resistance to Bart down." He claimed the Cumanda was the other abx. Cumanda is NOT an abx.
Ideally, I'd like to take what YOU'RE taking but I haven't gotten his "blessing" but it sure seems like everyone else is getting the blessing of their LLMD's.
The good news is I am getting better but I don't accept his mumblings about why I cannot take zith & Rifampin on same days.
And now, with all the readings of NOT to pulse on Rifampin, I'm worried about growing a resisitant so I feel I should be on daily Rifampin & Zith, agree?
Posted by swedish lyme sufferer (Member # 14579) on :
Great job Clarissa!
I have also been really confused.
I have looked up rifampin on the swedish national drug homepage or whatever you might call it. Very good information.
It says; � Rifampin should be taken on an empty stomach or 2h after a meal.
Then it says � Plasma concentration after a single dose peaks after 2h and goes away after 8 to 12 hours. Half life is 3h. Concentration in the spinal fluid is low, except for meningitis.
� Rifampin should not be used in combination with; atovakvon, isradipin, itrakonazol, midazolam, nifedipin, nimodipin, praziquantel och telitromycin.
OK that is what I found and there is also a lot of info about interactions, for instance if you are on anti conatrceptive drugs they are not as safe as normally! Might be good to know.
Also it sasy a lot about liver enzymes, they should be checked once a week or at least every 2 weeks.
So rifampin has a SHORT half life and that is why I think it might be good to take it every day.
Now, Diflucan on the other hand has a LONG half life 30h!
Again infofro, the swedish site; Halveringstiden �r ca 30 timmar varvid steady state-niv�er uppn�s efter 4-5 dagar vid upprepad dosering.
meaning you will reach the aimed blood concentration on diflucan after 4 to 5 days.
OK! Let us all get healthy with the rifampin!
Best to you all! Posted by swedish lyme sufferer (Member # 14579) on :
Oh yes the recistance, I forgot;
It only says that it always has to be combined with other anti tuburcolosis drugs to prevent resistance.
Does not say with what though. And if this applies to general treatment with the drug or only tuburcolosis treatment.
But better be safe.....
Posted by DW213 (Member # 9590) on :
Here's my combo: what do you think?
Rifampin (600 mg. once daily), + Roxithromycin + Bactrim DS + tetracycline!
Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by Clarissa: One other question:
Besides Tosho and Swedish Suferrer, is there anyone else on the board who takes Zith & Rifampin on the SAME DAYS?
Bless you all! Maybe I'll be able to sleep peacefully tonight.
This is what I am told to do; take rifampin and zith on the same days.
I have yet to start this protocol yet, will probably wait for late spring, when I will have time to rest in case I need it! Best wishes.
Posted by Clarissa (Member # 4715) on :
Swedish Lyme Sufferer:
Thanks for all of your excellent information. Outstanding work. Yes, this Rifampin "controversy" was really getting to me so I dug up past posts which are all contradictory.
SO, it sounds like, you need to take Rifampin WITH another ABX DAILY to keep the resistance down.
I'm going to triple check with my old LLMD before I start both Zith & Rifampin daily.
Thus far, I don't think the pulsing has caused me resistance as I am improving but the daily doesages of both abx could really give the Bart the PUNCH it deserves in the next few months.
Finally, I've learned from a nutritionist that Cumanda is NOT an alternative to ABX. I knew it! So, scarily enough, my LLMD was mistakened (sigh) so based on my gut, I continued with the Zith (phew).
What would I do without all of you? Thanks for helping me and my BART-BRAIN get to the bottom of this.
Good health to us all!!
Gratefully and lovingly,
Posted by Clarissa (Member # 4715) on :
Thanks VermontLymie for the added validation.
I hope my last 4 months of alternating days of Zith & Rifampin have been "all for not".
Based on my improvement, I'm going to guess that it's fine but I want to launch into taking both daily after confirmation from my old LLMD up North.
Best,
Posted by Diva (Member # 12128) on :
Hey I'm on Rif 300mg 2x and Lev 500 mg a day. Why can't I take diflucan with these??? As soon as I started I seen yeast symptons coming back. 1bitten I believe we see the same doc. He didn't say anything about 70 days diflucan for me.
Thanks
Posted by Geneal (Member # 10375) on :
I took rifampin (300mg 2 x a day) along with 600mg of zith (1 x a day).
I also took flagyl (750mg once a week) and diflucan 200mg twice weekly.
I hated rifampin. It was the toughest med on my system yet.
I tried the levaquin (ouch!).
Rifampin gave me horrible leg cramps (especially at night) and yes....bladder cramps too.
I may be in for another round of bart therapy.
My LLMD said I can do Cipro this time.
Hugs,
Geneal
Posted by Keebler (Member # 12673) on :
-
Clarissa - I admire your desire to gather all this together and I, too, swirl at the variations and I'm not even on the medicine.
Your father is correct, even about surgeries, etc. doctors have different approaches.
With TBI, there can be so many variables, doctors and patients have much to learn about TBI, patients react differently or have various combinations, etc. It is an art in progress.
It would be great to have something that was less complex and more understood. Until then, we have to sift through possibilities and hope we find the winning combination.
Good luck - and thanks for doing the work of gathering and sorting.
-
Posted by seibertneurolyme (Member # 6416) on :
Seems like hubby is always the odd man out.
Here is his current combo:
Rifampin -- 150 mg daily (increased from 75 mg daily -- LLMD said take as one dose -- not to take 75 mg twice daily)
Minocycline -- 100 mg 3 times weekly
Bactrim DS -- 1 pill twice daily 6 days a week
Diflucan -- 100 mg daily -- decreased from 150 mg daily for this last month and will discontinue in another week after being on this for 3 months I think
Zithromax -- Added when increased Rifampin dose -- 300 mg 3 times weekly -- not on same days as Minocycline
Alinia -- 500 mg daily -- for one month pulsed Art and Alinia 4 days of each -- now just on Alinia
Levaquin -- 500 mg daily -- had been on this for 5 months I think -- dropped it and replaced with the Zithromax. Was only on this for a week in combo with the Rifampin.
This combo is supposed to treat Lyme, Babs and Bart.
Also take HH -- 3 pills daily
New combo with Zith and increasing Rifampin and Alinia doses is really stirring things up -- New symptom of heart palpitations resulted in an ER trip.
Have an appointment with LLMD next Tuesday -- will be interesting to see what comes next.
Hubby had 2 leftover Levaquin so he wanted to try one to see if that had been what was keeping his vagus nerve calmed down previously since the heart palpitations were new since he stopped Levaquin.
So far has been sweating almost continuously and vomited 3 times since supper. Pulse rate increased and palps continue as they have for about 2 weeks now. Tremors and myoclonus activated as well. Definitely would not suggest Rifampin + Zithromax + Levaquin as a combo.
Gave hubby some bentonite clay and he finally seems to have dozed off. The 3 doses of IV Phenergan 12.5 mg will probably keep him in bed most of the day tomorrow.
Hubby takes the Rifampin with food as he does all meds. His LLMD agreed with us that regardless of the normal dosing instructions hubby should take all meds with food.
Hubby is getting concerned, but I am very optimistic about treatment -- this is the highest dose of Rifampin he has ever mangaged to take. Tried to take this med twice before. Even tried having it compounded once without dyes -- did not make any difference in how well it was tolerated.
Bea Seibert
Posted by scared08 (Member # 14695) on :
Oh my!!!
I'm glad that I ran across this! I'm taking Rifampin ONLY. Also, my LLMD says that with any and all antibiotics; when I get too sick, (herxing) to stop them for a while and then go back on it.
So, this is what I've been doing. I've gone off of it for 3 to 4 weeks at a time. Does that mean that I have a resistance now??
Also this may be a silly question, but does it cause the bart. to be resistant to all antibiotics, or just the Rifampin??
Also, my Dr. has NEVER mentioned the need for blood work, side effects, another antibiotic?? Hhmmmmm??
Posted by FoggyInLA (Member # 11643) on :
This will be my combo once the Rifampin is added.
Doxy 400mg day Bactrim DS 3/4 800-160 2x day Alinia 500mg 2x day Rifampin 600mg day.
This is to attack both bart, mostly bart + lyme. Any thoughts?
Posted by CD57 (Member # 11749) on :
Good combo foggy. Do you see Dr S.H. by chance? I did Rifampin+ doxy for 9 months.
One thing all you Rifampin users should know: it interacts with a LOT of meds...decreases them. Foggy, esp. the tetras, so you may have to take a higher dose. Also, it can mess up the parathyroid and sex-hormone binding globulin/hormone, so get tested for that. Scott F posted about this awhile back. Mine were elevated towards the end of treatment.
Also, just wanted to throw this out there: Lymeinhell treated Lyme + bart with 9 months of Rifampin + low dose Flagyl, and is doing great. I have not heard of this combo being used but may ask to try it. Hopefully she will chime in here as to her LLMD's thoughts behind this combo.
Posted by lymebytes (Member # 11830) on :
I see the inconsistency and here are more. I have 2 LLMD's, one ILADS one non-ILADS.
The ILADS LLMD said he NEVER prescribes Rifampin with any abx, it is much too hard on the liver. In a "must" situation he might go with a Bicillin/Rifampin combo for short time, but he prefer not to do that, so he doesn't.
Non-Ilads LLMD says Rifampin should never be taken alone, he prescribes it w/Septra w/ great results and says it is easily tolerated by most of his patients.
Now if you use the drug checker at drugs.com there is no interacton with zith and rifampin, but a huge interaction with biaxin and rifampin (same class - macrolides) that confuses me!
I am suppose to try this drug (for a very long time now) I can NOT get the nerve up to do it. The flat our horror stories here have me petrified.
I have yet to see anyone here report it was "the cure" for them, in fact some have said when stopped they just returned to their previous state..I studied it in depth w/searches and I am not kidding, the posts here stop me from trying it.
I need it for Ehrlichia not bart - 1.5 years of Biaxin killed Bart, that was simple. For me killing ehrlichia is impossible, I have a problems with both choices doxy and rifampin.
But it isn't an overnight cure, like I said 1.5 years on it for me, but its gone.
Take care.
Posted by CD57 (Member # 11749) on :
Lymebytes, it might not be that bad! It might your silver bullet!
Yes, lots of inconsistencies amongst the docs who treat us, hmmm?
Lymebytes, was curious: how do you know that your bart is gone? I was curious as to how you know that for sure it is, symptom-wise, that is.
Posted by Alv (Member # 15192) on :
My combo Azithr 600mg , Rifapmin 600mg( 2x3) but always take it all 600mg and Levaquin 500mg.
Felt a tightness on my left side.Stoped it myself.Continue HH capsules 3x1 from HEPAPRO.
Woke up for the first time WOW felt good...HH is doing something , continuing only Rifampin and azithr also.Oh by the way Only ANDROGRAPHIS for lyme yet.
Posted by troutscout (Member # 3121) on :
I hate to say this...but Clarissa....each person is different...as are physicians...and quite frankly ...I see you asking for...and receiving Medical Advice from unlicensed people in here.
I am afraid you may be exposing us to some things that we amy not need.
Trout
PS...What I'm saying here...people, please refrain from exposing yourself to litigation here. It is OK to say what YOUR LLMD says or what a medical publication says...but, don't say it 1st person. Clarissa...all medical information on MOST subjects...are contradictory.
Posted by Clarissa (Member # 4715) on :
Sorry if it offended anyone. I "think" most people on the board understand that none of us are claiming to be doctors and I, personally, would never hold anyone on the board responsible for medical advice.
I was just noticing a pattern and my protocol didn't fit the pattern. Ironically, I'm doing well and maybe the off-beat approach really did work for me.
I understand what you're saying, though. It can be misleading, confusing and opening up Pandora's box.
I was just trying to gather all of the controversial protocols in one thread to show how confusing it all can be...probably not 100% necessary for others but it was my way of alleviating my anxiety over the matter at THAT time...which was months ago (see original post date).
Next time I'll just goto the gym or take a xanax but I truly don't think I offended or mislead anyone.
I think my peers on the board know that I was just trying to get to the bottom of the Rifampin/Bart black hole.
Best Regards,
Posted by Boomerang (Member # 7979) on :
Clarissa, I think your thread has been great. Thanks so much for putting all of this info together!
Posted by FoggyInLA (Member # 11643) on :
No I see the regular Dr. H. Non ILADS member although he might as well be, he reads and constantly researches all the literature. Thanks for the advice on the hormones CD, And yeah I'm aware that rifampin decreases a bunch of medications. No biggie.
Posted by troutscout (Member # 3121) on :
Clarissa,
The thread was a great one...just trying to get people to occassionally slow it down a little.
Nothin more than that.
keep on smiling....din't mean anything more than having everyone slow down a little.
Trout Posted by lymebytes (Member # 11830) on :
CD57 - My sister LOVED Rifampin and my niece did well on it, but my husband - a mess after one pill, that scared me because he can tolerate ANYTHING. Then the search here - did me in - seriously just terrified me. I have heard everything from brain swelling to seizure to literally being brought to their knees. Rif sounds insane, although your right what if it was my silver bullet..I can't bring myself to take it for the life of me to find out.
Now Bart - symptom wise things changed for sure. I never had a rippin' case of bart to begin with, although positive, titers were low. Dr. S relies heavily on Igenex testing, (although I am aware testing can be wrong) but I am tested for co-infections at least every 90 days. The titers consistently dropped, and then spiked last year, after that point dropped and dropped until gone. I have been retested several times - negative. I do not have sore shins or feet anymore, many of my nerve symptoms have calmed down, many are gone, such has hot flashes in my feet, shooting pains, etc. (remaining patches of nerve pain on my thighs that comes and goes) both LLMD's think can be related to my viral issues (like a systemic PHN) which can be painful and torment the nervous system or Lyme itself. Other things that were indescribable are also gone.
I knew something was different before the test results came in...no foot pain, no shin pain or bone pain for that matter - gone. He truly believes it no longer is an issue.
Igenex testing was interesting to watch during treatment as the titers consistently dropped as I stayed on course with the abx and with symptoms disappearing.
Rifampin - which I need for ehrlichia (if he is wrong about Bart, my gut tells me it is gone) would finish it off I would hope, but I do feel different and like I said knew something was different. He is very adamant that Biaxin kills Bart if used LOOONNNNGGGG term and some cases of ehrlichia, my HGE is gone too...HME lingers and my yearly Lyme WB is positive still.
There is a story at Canlyme about erythromycin curing bart and is recommended at lymeinfo.net..as my last post read erythromycin is exactly the same as biaxin only easier on the stomach.
Oh, and severe intestinal pain is gone (we thought could be h.pylori even though I tested negative) that bart is also known to cause...that was great having my intestinal issues totally resolve.
We all know treatment varies between us all...I don't know what worked for me would work for other's, I just know it worked.
Take care!
[ 09. June 2008, 02:37 AM: Message edited by: lymebytes ]
Posted by proudtoserve (Member # 14811) on :
Scared08
I am with you, I was only on Rifampin for the last month.
Now I am on Rifampin and cats claw, I was told the cats claw will magnify the Rifampin.
I dont worry too much about what other people are doing with antibiotics because not only is the disease different for everyone but it means that treatment will also be different for everyone.
I think it is a good question to ask your doctor, but ultimately for everyone else posting here, if you dont trust your LLMD's find a new one.
Ultimately if your treatment is working why question the manner in which you are getting better?
If you are not improving, THEN I would say you need to have a real heart to heart with your LLMD.
Please dont get me wrong I think it is always good to ask questions and be active in your medical care.
BUT I think there is also a fine line between asking questions and questioning your doctor for no reason.
Anyone else agree?
I really hope this came accross the way I wanted it too. It is difficult to keep track of a thought these days.
Proud Posted by Clarissa (Member # 4715) on :
This is my last post on this topic that I started 3 months ago.
I was at a point of mistrust with my LLMD, so I turned to Lymenet for support. I am not a mistrusting, petrified person by nature but based on some other factors, I had reason to weigh the pros and cons of my situation at that point and time.
Based on my own experience, some of my peers thoughtful input and my own gut feeling, I changed LLMD's. Both LLMD's played essential roles in a positive way in bringing my TBD's into remission.
End of story.
Good health to all!
Posted by northstar (Member # 7911) on :
Thank you Clarissa for providing the opportunity for people to share experiences of bart treatment protocols, and their responses.
According to Dr. J.S., there is no perfectly reliable protocol. Why that is so, is something for the researchers. What we do seem to see here, is that it can be individual.
As a patient, we are only looking for the circumstances and conditions in which something may have worked for one person, yet always go with what the llmd prescribes. Then, based on response to treatment, re-visit options with the doctor, which may include just extending the treatment period.This thread gives us the opportunity to see how other people responded to their treatment,symptomwise.
This discussion makes us aware that there are options in case there was treatment failure. We would not know of other options and circumstances if it were not for this thread. We would not know of some factors we may have overlooked in our individual symptoms and responses, which would help our own dr with his decisions.
Thanks again for a great thread.
Northstar
Posted by utz20 (Member # 17058) on :
I'm brand new here, have been sick for 4.5 months which really makes me a newbie. I was certain I had lymes after six tick bites one weekend followed by definite symptoms but had to fight for antibiotics. I finally have a LLMD and a positive for borrelia and bartonella and have just started 500 zith, 150 x 2 rifabutin (yes horribly expensive but supposed to be "cleaner" than rifampin and 500 flagyl daily. I plugged into this because I am wondering if the rifabutin should be in two separate doses or all taken together. I'll be doing a safety lab in two weeks. I don't see anyone else mentioning rifabutin (mycobutin) though it seems to be treated the same as rifampin except for the dose. I know that this whole treatment concept is experimental so it seems very important to get feedback from the other experimenters. I would especially like to hear about people who have had success of course and any other additional tools they have utilized. I am personally very certain that my acupunture (laser style), chiropractic and massage with lymph emphasis has been very helpful with the neurologic pain. I hope this posts to the thread, if not educated me. Thanks
Posted by Clarissa (Member # 4715) on :
utz20:
I think you will get more responses if you start a new post using Rifabutin in the title!
Most people have "been there done that" with this post and I would hate to see your questions be overlooked.
Unfortunately, I do not have the answers but many probably will if you start a NEW TOPIC.
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