troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
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
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
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.
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
-------------------- PROUD : )
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
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.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
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
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
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
Posts: 27 | From SW VA | Registered: Aug 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
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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