posted
I just had a phone consult wtih my LLMD and he asked some different questions. It seems I was never tested fro bartonella and my responses are saying that I have bart.
I told him that every night I have nightmares that I wake up exhausted from them. He asked if I have scratches..YES!! I have real scratches all over my body all the time and it is NOT my cat doing it. I thought I had something poking me in my bed at night.
Then he asked how I feel after my espon baths. I feel good but then all my pours start stinging and I feel itchy all over for an hour. I thought I was allergic to the epson salts, he said no that those wtih bart get blotchy and itchy after showering or bathing. OMG right on with that. My arms get red blotches all over every night.
Also the muscle pain and the skipping heartbeat. They are keeping me on omnicef AGAIN and either stopping or lowering my zithro (do to tinnitus and hearing keeps fading) and adding Rifampin (never heard of it). They say this drug is very strong in the fight of bart? So it will be gradual with me since all drugs bother me.
Any issues anyone has with this drug. I hate new ones in fear of what is going to happen.
Is it possible to have just bart and not lyme?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
If I remember correctly, you had plenty of evidence of Lyme. I would say you have both.
Rifampin gave me a terrible headache, but not everyone responds that way.
There are tons of threads on Rifampin. Either do a search or look on the other pages .. for old threads.
I'm glad your dr figured this out! Doctors should always ASK QUESTIONS!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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Bluemoon
Unregistered
posted
Rifampin seemed to make my sleep get worse, as well as it speeds the metabolism of Ambien, so it was a double hit to my sleep. Had to increase the dosage of Ambien while I was on Rifampin.
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I suggest ramping up slowly on this medicine. Some LLMDs do not recommend ramping up on medicine but starting at 600 mg. IMO that is too much to start. Also, in Dr. S's book he suggests starting at 300mg for one week and going up to 600 week 2.
I tried this medicine over a year ago and after 2 weeks at 600 mg almost ended up in the ER. I recently tried it again and ramped up slowly .... very different experience.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Thank you all...it is suggested that only take one pill every other day for the first week..then on each day the second week.
after that I have to call my llmd and see how i am doing before increasing any further.
Haley what almost sent you to the ER???? Wondering what the effects are since my lyme is neuro and severe vertigo...afraid of it getting worse
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I agree with LSG, it KICKED my son's butt the first week. It was his worst herx ever, but he got through it and really started feeling better all around within a few weeks. He has been on Doxy/Rifampin since November.
Posts: 54 | From Texas | Registered: Oct 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I had severe chest pain and blood pressure 196/152 plus bruising all over my legs. I thought I was having a heart attack.
This was in the beginning of treatment and the bacterial load was high. Looking back I should have hung in there but I was sure that I was having a reaction to the medicine.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
yes, I forgot until Haley mentioned it, our son had his only heart episodes when he started Rifampin, but hasn't had any issues since.
Posts: 54 | From Texas | Registered: Oct 2010
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posted
OMG now I am very afraid..heart issues. I take toprol xl for my blood pressure and to stop heart palps now.
DId you guys start wtih only 1 every other day for a week then 1 a day for a week? or did you take 2 from the beginining
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
How do you get rid of the bacterial overload... I do espon baths and take a few chlorella each day...sometimes charcoal...I cannot drink lemon water..get reflux bad..what else is there>
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Rifampin gave me horrible muscle cramps.....legs, thighs, bladder.
I think this was the one medicine I disliked the most.
I hung in there for two months....long, crampy months.
My LLMD and I decided that my pain wasn't worth the minimal gain I got from it.
Just my experience though.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
You should be fine if you are taking one pill every other day. I started with 2 every day that was the problem. You will probably work up to 2 everyday. I should add that I have not had chest pain since those 2 weeks on Rifampin.
The bacterial load will come down as you treat with abx.
Epson baths etc... are for toxins.
Posts: 2232 | From USA | Registered: Aug 2009
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Did you also start at 2 pills a day? It seems my LLMD is trying to ease it in for me wtih one every other day and moving up week by week.
Bladder cramps do not sound fun. I already have the muscle cramps and lately I always have bladder pain as if I have an infection but I do not? Last thing I need is to make it worse.
I am a chicken with new meds...I have things to do that are very important till monday so I wont even start it till then. I can barely move now, with extra issues it will be impossible.
Thanx for your support all...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
This drug just made me feel great and nothing else.....except orange pee
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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posted
Thank you Laura.....you eased my severe fear..I will pee orange forever if it helps!!!! Will start it tomorrow...
Did you take it an hour in the morning before food? Was gonna just have green tea with it first...then hour later start pumping down the other thousands pills we take.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My muscle aching was 3x more painful on rifampin. Headaches daily the first 2-3 weeks.
Rifampin fired up my lyme sx that had been laying low for years (except lyme cycle). I'm also mycoplasma pn ++, so it fired those sx up.
Good things did happen with rifampin....I've had GI issues for years and within 2 weeks my GI was flowing great. Which was exactly why I resorted to abx after being off them for 6 yrs.
I thought 3 mths would be enough to get bart load down. Wrong move. Within 2 weeks of stopping them all GI issues roared up again.
Oh yeah 150-300mg was more than I could take. Some take much higher doses. Each is different.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6485 | From Louisville, Ky | Registered: Jan 2002
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
For me it was a wicked drug. Had to stop after 5 days. Couldn't take psych stuff. She started me on 600. I dropped it down to 300, then got off. Wouldn't touch it again. Everybodys different, good luck and feel good.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
wow lyme she is putting me on 0ne 300 pill every other day for a week
if its ok then only one everyday for a week, after that call her to see how it is going.
you have totally scared me now. Was gonna start the one tomorrow but to scared now. What psych stuff did you have????
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Why are you scared? Your LLMD is starting you off slowly. The above poster started at a whopping dose. You are comparing apples to oranges.
Think positive. If the medication does not agree with you, then you can stop it. You are starting off so slowly that I don't think you need to worry.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
THe responses here just show us how individual the responses are amongst us all to different drugs and protocols.
My son started on Rifampin, 300mg. once a day for a week, then twice a day. No problems. (At least, no new problems, if you know what I mean.) He's a sick puppy but Rifampin didn't make him any sicker. We're only in our second week, so too soon to say if there's any benefit. He, too, has those purple stretch-mark like rashes in odd places, like under his arms and at his hips.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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I have major stretch marks but from pregnancies. The doctors always commented on how bad my stretch marks were. Purple all the way up the length from lower stomach to chest and they never went away.
I have scratches, not stretch marks that appear everywhere. They started on my knee, all over my arms and back. They actually burn when water hits them. They can be there at night and gone in the morning. Some of them even scab up as if I was actually scratched? I am not sure if that is the type of marks for bart or not. There is just no reason for them.
I also get crazy tingling and stinging in my pores after bathing or showering for about an hour and terrible nightmares every single night.
I will try the rifampin tomorrow after I take a drive into manhattan in the morning. It says take it an hour before eating or 2 hours after eating. Am I correct on that one? I pray your son gets well fast.
Abx--by now you know I am afraid to start new things. Too many other health issues since I am 19 have left me fearful and not very trusting of the medical field. Be patient with me~~
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
how are you reacting to the rifampin? i just saw your post today and it may be a little late to advise you now but my experience with Rifampin has been great!
LLMD started me on 150mg/day in jan and i've noticed a big improvement over the last few months. he kept me at 150mg/day until a few weeks ago, he upped me to 300mg/day with a Ceftin & Biaxin pulse. i had a horrible herx for a few days and the leg pains are a little bit worse off and on but i'm sticking it out.
side effects that i had are minimal for me(orange pee, headaches, and pain increase) but like others posted earlier, it's different for everyone.
hope you're able to tolerate it and see some improvement soon! Posts: 95 | From IL | Registered: Jun 2010
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posted
cat...i has to stop the rifampin after the 2nd pill of 300mg with a day in between the dose. I had a very severe herx and could not breathe and rapid heart..all nerves in my body went crazy.
I was in some weird state of being zoned out according to my family and I did not sleep at all for six days after. My body could not calm down..what a horror. I am glad you are handling it better than me. Are you taking it for bart also?
That is one drug I am stayign far from!! Much luck to you and hope it helps you and brings a cure...Ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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