posted
I started out on 150mg every other day because of this........
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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Jill E.
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posted
I started out at 75 mg. and was a dizzy mess. I never did get the orange urine because I couldn't get over 300 mg.
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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feelfit
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posted
maybe the dose was too small to affect your urine color?
I am having bad fatigue too, I think a lot of the meds can make us feel this way. Truly, I am just a lump.
I went off of mepron for 4-5 days because of this and my first dose back on today and I'm zapped.
I am sure the fatigue will let up for you once your body adjusts to the rifampin. Posts: 3975 | From usa | Registered: Aug 2007
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sammy
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posted
The orangish coloring only lasts a couple hours (2-3) after taking it. And sometimes it is barely noticeable. I try to keep well hydrated so that might be part of it.
I also wear contacts and it has not stained them or colored my tears.
Posts: 5237 | From here | Registered: Nov 2007
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Starfall1969
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posted
I'm on 300mg of rifampin, and when I first started, I had a HORRIBLE time with dizziness and nausea.
I seriously thought about going off it, but the pharmacist said it could take a couple weeks to adjust to it because it is a very strong med.
I'm fine with it now.
Also, at first I had cut my dose in half, and when I did that I didn't notice much discoloration of urine at all, so it could just be that your dose is too small to color your urine.
I'd give it a little time till your body adjusts, but if it's really bad, talk to your LLMD.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Took second 150 mg dose yesterday. So tired now I can barely keep my eyes open. I CAN'T be like this as it means I can't work P/T from home and save my job. Completely unacceptable.
If this doesn't pass sometime....
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
When I started my son on Rifampin he had a similar result with fatigue - within about 2 days he was only awake for about 6 hours a day. He stayed on the couch and limped or crawled to the bathroom as needed. The fatigue was much better within about two weeks.
In the case of my son, the more immediate and pronounced the herx reaction was, the more long term benefit the abx seemed to have.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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seekhelp
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posted
Sorry your son had to go through that, but that's great it helped!!
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Jane2904
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Member # 15917
posted
Seekhelp,
Sorry you are feeling like this. Hope it passes.
My daughter is starting 300mg tonight. Noticed you took 150mg. Does Rifampin come in 150mg capsules?
Hope you get some relief, I have read this medicine is supposed to be good for Bartonella.
Take care
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
I started on 600 mg twice daily this time around with 400 mg of Mino. Brain is buzzing away as expected and Neck is very stiff.
Thankfully the eye inflammation came under control within a few hours of first dose.
I have serious trouble with intermediate Uveitis and everything I take must have the ability to reach the eyes properly. Standard doses ain't cutting it.
Bart in the eyes is a mofo. I am on to it now though. I have HBOT all this week on top of that. Surely it must do the trick!
The fatigue may be a herx but its hard to be sure. I had an urge to nap for the first time in a long time yesterday. Makes a nice change from the wired tired bart brain.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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feelfit
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Member # 12770
posted
NMN,
How do you deal with the brain buzz and such? Do you take something to get through the side effects of these doses?
Heck, I feel like I am going out of my mind with symptoms in my brain....pressure, headaches, ear fullness etc..
How do you get past the uncomfortABLE HELL of it all?
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Feelfit I cope mainly through exercise. I have stayed sane through all of this because I am lucky enough that I can work out in the gym when the rage and/or irritability takes hold.
Now I have the PICC line in I have traded that for running on the beach. I would have gone crazy without that outlet....Oh and hot baths before bed.
I don't take any meds other than antimicrobials and anti fungals if thats what you mean?
I just double my melatonin and hope to get to sleep which I still do thankfully even in the middle of such a herx. It just might take an hour or so.
I dont get headaches really and never have with this illness. I would give anything to get rid of the buzzing brain though.
Its been there since my first low dose doxy treatment 2 years ago. I think it was Bart being under treated and pushed deeper into the CNS.
I'll get them li'l suckers eventually. I will just keep turnin up the heat.
You and I have been here similar time frame. Won't be too much longer
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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feelfit
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posted
Hope So! For all of us.
Posts: 3975 | From usa | Registered: Aug 2007
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Lymeorsomething
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Member # 16359
posted
NMN, is Bart the main culprit for your eye stuff?
I'm doing Rifampin 600 mgs per day. I just started...only a day and a half in. My urine is like an orange neon sign but so far no increased fatigue or herxing yet...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Am I missing something? Are you positive for TB?
"Borrelia is known to be naturally resistant to rifampin"
posted
Bart has caused me eye problems recently when I went off rifampicin for 2 weeks after 6 months of theraphy (was still on tinidazole and biaxin) Within that 2 weeks my eyes started stinging, blurred vision and twitching like hell.
Better since back on, but a worry for the long term and trying to shift this thing once and for all.
-------------------- Sx Start Jan 08 (test neg, but herxing)Susp Lyme, Bart + Babs??
ABX Doxy 400mg + Amox 1g Jun - Sep 08 Rifampin 600mg + Biaxin 1000mg Tinidazole 1000mg/day - Sep 08 to June 08
Currently taking Salt/C 15g (himalayan salt)
85-90% better Posts: 231 | From Australia | Registered: May 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Cat Scratch disease...
Who hasn't been ever scratched by a cat?
I would hazard to guess, very few of us.
Does this pathogen (Bartonella) rear its ugly head when the immune system has been compromised?
Is it already IN most of us, but "dormant"?
"Cat scratch disease (CSD) has been difficult to diagnose in animals because of the protracted clinical course of infection and
the quiescent phases when the microbial culprit lies dormant."
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Marnie, I had no idea Bb was immune to Rifampin. I'm really questioning these treatment protocols. I have no Tb positive test. So essentially my LLMD is not treating Bb at all now for 30 days? Since Bb is my only proven test (under Igenix only of course), why let Bb run rampant during this time?
I feel terrible on this drug. I'm pretty close to calling this TBD treatment quits or doing a more focused treatment. This rotating of non-stop drugs with 'guessing' of co-infections is not sitting well with me. I need verifiable data or someone to sit down and say you have 95% of the symptoms - not well, it may be.
I've never had a positive Bart test. I know I'm not the expert of course, but I feel like some of these drugs cause a lot of suffering on an experimetnal basis. I'm just not liking my responses to them.
It seems like Biaxin/Ceftin were most useful. Biaxin/Plaquenil seemed to be a decent combination. It's dumb I'm off Biaxin/Plaquenil after 10 days and I was making improvement. Why? I couldn't do any better thab pulse Biaxin/Plaquenil for 3-4 days on / 1-2 days off.
I know others may disagree with my opinion...
For example, I have verifiable proof in my blood work my RBCs are breaking apart prematurely (high free plasma Hg). Babesia can cause this to happen I believe. Therefore, the presumption of Babaesia is more sensible, thought I have no other clinical data to back it up. Proof in labwork along with correlation of symptoms is easier to digest.
My uneducated guess on my condition is Lyme/Babesia, bad Candida, or an uknown neuromuscular disease.
I continue to watch these threads and notice many, many here are exercising while on treatment. Not all of course, but a decent portion. It's interesting. Either it comes down to I have no motivation, not tough enough, or I'm missing something big in the clinical picture. I know sometimes I sound like a broken record. I'm trying to work through this stuff in my head.
I remember someone said Dr. F blanket treats with Biaxin/Plaquenil. Maybe that is the best route given that we're all wildly guessing on this stuff anyways.
My symptoms always seem the same, which is weird:
- Muscle tightness - Stomach indigestion - Chills - Sweating (not horribly) - Imbalance / head pressure / uncoordinated - Fatigue upon exertion (HUGE) - Spinal tightness (feels like someone is squeezing my spine - not pain) - neck stiffness/tightness - Anxiety - Some air hunger (worse with Rifampin)
I just want to hear someone beat Lyme with oral medications AND the muscle tightness melted away and they were normal. I always seem to read "I cured Lyme, but XYZ is still here causing this or pathogen CDF still pops up, or heavy metal toxicity, candida, and 825 other things."
[ 06-02-2009, 01:07 PM: Message edited by: seekhelp ]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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posted
Last question - could Rifampin be terrible for you IF you have a defective / low functioning gallbladder? I recall someone said it's processed fully through the liver, while other Abx use the kidneys.
Could my poorly functioning gallbadder (15% ejection fraction) make it harder to tolerate this drug and be causing toxicity? My liver enzymes always have been fine on other drugs, but my bilirubin has been elevated forever.
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Lymeorsomething
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posted
One MD says Rifampin can be useful in lyme treatment at times. See link.
I'm using it currently for suspected Bartonella...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
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Member # 15067
posted
Interesting- the problem is LymeMD says 'use it asd a MULTI-DRUG REGIMEN with other therpaies.' I'm told to use it solo. It may be a moot point considering how poorly I handle it, BUT it sounds like it needs to be used with Biaxin/Plaquenil.
Why can't there just be agreement on all these approaches?
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Lymeorsomething
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posted
Does he think you have a co, Seek? Maybe he's trying to see what's below the surface...
I didn't realize you were running it solo. I'm using it in combo with Omnicef and Mepron...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
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Member # 15067
posted
Doc didn't say specifically, but I think he clinically Dxed Lyme, Babs, and Bart, along with lot T, low cortisol, and other stuff. Lyme is the only thing I have a remotely positive test for (see signature line).
What's below the surface is my career, life, etc. on the line. I need to get better ASAP. As we all do I realize.
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Lymeorsomething
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posted
Seek, I know i've asked u before but have u tried adding in the Cortef?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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feelfit
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posted
Rifampin without anything else????? Is that correct?
Rifampin should always be combined with another abx for resistance reasons.
I am chomping the bit.....neigh.....
My next step is levaquin and rifampin together. How is that for a horse?
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
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Member # 15067
posted
I have not used the Cortef much as it's a steroid.
Feelfit, yes STANDALONE. I just don't get it. How come I keep encountering situations like this when the guidelines clearly state what NOT to do? I'm lost and frustrated.
I just want compliance with Dr. B's protocol(s). Everyone says that's what it takes. I want to get better. I'm tired of doing all the researching and questioning while paying tons of $$$. Sorry about my frustration tonight. I'm not feeling too well.
I'll probably call my LLMD to see the rationale soon, but then I have to absorb cash outlay to ask why. The appointment was such a whirlwind, there is no way I could've known/reviewed the drug protocol at that time to question things like this. What's one to do?
What's so confusing is my LLMD says in his notes if a drug therapy is working to stay on it, but Rxes it for a very short time. In effect, you can't stay on it no matter what since you ran out of pills! I keep wondering if I'm missing something there? I'm a structured kind of person and want to hear..take these 3 drugs for this time period...done.
Am I being irrational about the whole situation or would others feel the same? I know I push hard to get better and want maybe too much too fast. However, I seem to struggle to get combination therapy that is indicated by Dr. B. I can't figure out why this is so hard to achieve when I see others on multiple drugs and doing better. How can you let Lyme Tx just lapse?
Someday, I pray to look back and say I was wrong and the treatment worked. I really really do. It's nothing more than a pipe dream today though and I know that. What will happen is I'll beat Lyme and then get some simple disease that is Abx-resistant due to my taking all the drugs and croak of that. Then the IDSA will laugh at my expense and say in my obitutary...told you so moron.
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seekhelp
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posted
Need help / opinions on solo Rifampin treatment.../\
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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posted
I'm just lost. I asked my LLMD's office about this. They said Rifampin hits Lyme (all drugs do they Rx), but primarily is a Bart drug. They stated no issues with Abx-resistance forming due to mono-therapy using this Abx. Goes against what Feelfit said and I'm sure she's got good references.
They said it sounds like my recent issues are a Bart herx (even when I said stuff started 3 hrs into the med). My anxiety is through the roof. I feel very jittery and do not like this. I'm gritting my teeth like crazy.
I asked why no treatment for Lyme/Babs right now? They basically said take whatever Abx/anti-malarials I want in any dosage I see fit/can handle (of course capped at whatever the LLMD issued originally). How can you operate like this as an ill patient? They said if it seems like it's helping, keep going. If not, stop. It's hard to judge this honestly.
They'll refill my Biaxin and I could take that w/Rifampin, or pulse Rifampin w/it, or stop Rifampin, or take Flagyl/Tini, or..... I do not feel well enough to think through 50 combination possibiltiies. Patients are too ill or at least I believe they are if they are seeing a LLMD out-of-state! I feel like I'm going to hurt myself if I just guess on which combinations to take.
When drugs and / or dosages taken of those drugs aren't that important, can you really beat this disease? Did Dr. B write all these guidelines for no reason? Are they just loose interpretations to follow and not super meaningful?
I hate trying to get solid direction for treatment protocols on in Internet forum!!!!!
Given my intolerance to so many drugs and inability to handle any real doses, it looks bad. I can't get the office to understand my gallbladdder issues either. With all LLMDs I have encountered, it's herx, herx, herx, and more herx. Is it always?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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Member # 15067
posted
I looked online - Rifampin is processed through the PA-450 liver pathway....bad news if I have a genetic detox issue, right?
Also, a drug interaction checker says Rifampin reduces Biaxin effectiveness by 40%. Am I missing something?
Is Biaxin/Rifampin/Plaquenil a safe combo? I really don't feel comfortable trying to guess. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
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posted
Rifampin is usually paired with zithromax. Even your first Dr. rx'ed this way.
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
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posted
/\ Really hoping for feedback on the best combination therapy option since I'm mixing/matching on my own kind of. I'd rather listen to experienced people here who have been through this ringer. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I don't seem to understand why you are having to do this on your own when you have an LLMD. Why isn't he helping you with the combo? Why is he relinquishing treatment protocol to the patient?
Anyway, no need to answer that--I'm just worried about you having to play doctor on yourself when it comes to heavy-duty abx even more so than most of us seem to have to.
My daughter is taking Zith and Mino with the Rifampin. I've only ever heard Rifampin used in combo with another drug and usually Zith or Mino, but Biaxin is probably okay too, though I truthfully don't know for sure.
The pharmacist told me that the Rifampin is processed through the liver while the Mino is through the kidneys, and the Zith I'm not really sure about because I didn't understand what she said--something about absorbed by the tissues then released--huh?
Anyway, please be careful combining these on your own. Is there anyone--even your current LLMD--that you can perhaps fax what you plan on doing beforehand and get the okay?
I find it strange that your LLMD--who is supposed to be in charge of your treatment--would tell you to find something on your own that works--maybe I'm not understanding the original post.
Please try to find another LLMD if possible for the future--I don't trust the one you have, just doesn't sound right to me.
I'm sorry I can't help more, just worried about you and I can "hear" your frustration in your post and wish I could give you more solid advice.
Posts: 648 | From northeast | Registered: Feb 2009
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seekhelp
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Member # 15067
posted
I'm trying to clarify things better, but I'm not comfortable writing any more publicly on LN. I can see from lack of response from other members here, they probably think my questioning is wrong. I have to for my safety though. This is kind of a bad predicament.
Everything I receive for a treatment plan is great IF (note that word), you can follow it to a tee. If something is altered for whatever reason (lack of tolerance to a drug, dose cutback, etc.), a sick patient runs into issues.
I'm happy to correspond via PM.
BUT, I appreciate advice on the soundness of using the following therapies:
I really could use some help. I'm out of LLMD options and want to give this one a fair shot. Many here have been helped immensely and that's important to me. If I could get this doc on the phone, I have no doubt everything would be 10x clearer, but it's not going to happen. I'll do my best. As many say all the time, communication is key. I truly believe a doctor should be willing to talk on the phone sometimes to be successful with patients, especially in the initial stages of care.
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tickbattler
Unregistered
posted
My husband's experienced LLMD in NY has put him on rifampin, minocycline, malarone and artemisinin.
My children see the very experienced Dr. J in CT and he has one of my boys on rifampin plus azithromycin and the other on rifampin plus biaxin (also Mepron and artemisinin for babs duncani). Dr. J specifically told me that rifampin by iteslf does not work.
seekhelp
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Member # 15067
posted
If those LLMDs say it doesn't work standalone, that's good enough for me. There's this opinion, the experienced NY LLMD, the CT LLMD, LymeMD, and others saying the same. THat's convincing to me.
Perhaps I misinterpreted the Tx plan? I'll probably call my LLMD again to double-check.
Just a FYI, you may want to take the doc's name off your post to comply with LN rules. I believe they said you don't attach a LLMD name to a Tx plan (except via PMs). I know you're trying to help and it's appreciated.
What's amazing is in 8+ months of Abx treatment with multiple LLMDs, I've only once treated two forms of Bb at once AND this was Rxed by an ID doc. Ironic. You would think with my drug reaction issues, I wouldn't be able to handle Biaxin/Ceftin concurrently, but I did well. I seem to have done better on that than mono Bb therapy.
Tickbattler, are your sons Dxed with Bb, Babs, and Bart or something different?
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Didn't make it through reading all the replies, so you might have this covered already -
Do you have detox issues?
Taking Rifampin is how I learned about liver detox pathways, and the fact that I lack some that are necessary to detox Rifampin.
The exhaustion was unreal. The brain symptoms were unreal.
Nausea too, not sure if you have that.
...Not to mention an undeniable sense of impending doom.
It may be that your body simply cannot detox Rifampin. In which case, if you continue to take it, you risk becoming more and more toxic.
Not trying to scare you, just want to make sure you're aware of that angle as well.
Be careful.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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seekhelp
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Member # 15067
posted
My LLMD suspects me of having de-tox issues, but doesn't run tests to confirm due to $$$ and the fact nothing can be done in the doc's eyes to alter genetic defaults. This is not the opinion of others here such as TerryK, GiGi, etc.
I have EVERY one of the symptoms you mentioned Cactus. The impending doom / jittery feeling got worse every day I took Rifampin. One day into Rifampin, I felt this terrible sense of nausea, weakness, and fear at the same time. Much different than any other Abx I've taken to date. I was so tired for two days, I literally could barely get out of bed (on 150 mg daily only).
My best description I told my wife is I literally feel poisoned from head to toe.
Doxy gave me a lot of head pressure, but not the other issues.
Now, if someone suspects a detox issue, knows the patient has a malfunctioning gallbladder, etc. why put them on Rifampin? I'm guessing I wouldn't tolerate Art so well either then, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Seek, I've have been through the ringer a few times and I can say only what works for me. A good cell wall drug plus two inter cell abx. In my case Ricephin,mino,rifampin or Bicillin, mino, levaquin. I dont fancy plaquinel.
I will pulse out mino for flagyl for 2 weeks whilst on the levaquin to cover cysts. I also take malarone but not for much longer. The flare up I thought was babs was under treated Bart.
You really have to use higher doses to make a real difference. Mino 400mg levaquin 750mg rifampin 1200mg. I really have to dose rifampin 900mg or more for the Bart in the eyes.
Again I am talking for myself who is defo a classic lyme and Bart nightmare. I think the rifampin maybe hits strains of bart that levaquin does not. Either way it works really well for me.
Like I said I have been in a bad way the last few weeks but thats because I took a wrong turn on treatment in January(bactrim +zithro for Bart was useless for me).
You learn so much from your mistakes but they are so costly time wise.
I have been at this 2 years and I am only now finding my magic combos. I hope its all uphill from here.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Rifampin/Doxy/Paquinel pulsing zith was my best combo. Got me to 90% after treating with all kinds of combos for a year.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Yeah Seek, Just read your post about 150 mg Rifampin. Scratch the high dose idea. Defo use it in combo though. My LLMD is upstate NY and uses this protocol.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Be cautious with art, definitely. I do not tolerate that either.
The impending doom, the weakness, the fear, the jitters, and the feeling of being poisoned - all very familiar after the Rifampin experience.
I believe I said almost the same words to my husband - that I felt completely poisoned.
Like you, I did not get out of bed - and even needed assistance sitting up by Day 3.
And it was totally different from any herx I've ever experienced.
Are you still taking this? Have you spoken directly to your LLMD, or only to the staff?
You may need to give your body a rest, if this is a detox issue.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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This is my 2nd time on Rifampin. The first time I went on it for 8 months with Biaxcin and then Zithro combo with other abx too. I see a very busy LLMD in NY and my kids see Dr J. Both of them prescribe Rifampin with other abx like a macrolide = Zithro is suppose to help Rifampin in tx.
I had herxing from Rifampin the first time for 3 months off and on. The dizzyness will let up and I found what helped was a lot of Cowden Parsley, Burbur and Pinella. I was taking full dropperfuls as much as needed all mixed in one cup. Also lots of lemon water.
I started the first time with 300mg pill a day for a week then went to 600mg/day. This time around I started with 600mg from the start.
BTW Dr J even prescribed my son who is just 12 the same amount of Rifampin with Zithro too.
Hope this helps and I agree with everyone else that your LLMD should be guiding you???
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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pamoisondelune
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Member # 11846
posted
Stephen Buhner,herbalist, author of "Healing Lyme" uses Polygonum and Smilax (Sarsaparilla) for detox.
Herbals helped me greatly. I wouldn't want to take abx without herbals.
I'm really worried about your fatigue conflicting with your career. I had to go through several years of fatigue, while on abx. I couldn't have worked. But that was before i discovered herbals. I don't know if herbals would have removed all the fatigue for the first 2 years even while going through the big initial herxes.
Everyone says lemon juice for detox. One fellow said his doc wanted him to juice 4 lemons a day.
Maybe try some detox herbs?
from Polly Polygonum
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Completely unacceptable. ![[Smile]](smile.gif)
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