Rifamcin

An antibiotic used to interfere with bacterial transformation from EB to RB. Most commonly used with TB. Should not be used for short courses.

post pulse 23

Okay, I finished my 23rd pulse on Friday and then just did the regular daily medications over the weekend.  Perhaps I should say regular weekend medications as my last dose of azithromycin was Friday.  In any case, I thought I would recap some things I noticed during the pulse and things I've noticed over the weekend.

What I've noticed is not any improvements in my symptoms...unless you consider having more pain and discomfort an improvement.  Pain...that's a relative term.  It's more like inflamation and soreness then pain per se.  Hard to describe how it feels but I think many of you know what I'm referring to - a hotness in one's extremities (my legs mostly). 

Chronicles of a Rifampinaut: the Seventh Inning Stretch

Yes, it has been seven months since I began taking Rifampin although it seems more like eight.  It's entirely possible my count is off, it's not terribly important that it would be off by one.  In any case, I'm now on the most intensive CAPi I've ever been on.  I'm now taking Doxyi, Azi, INHi, Flagyli, and Rifampin, along with NAC all at the same time this week.  I started my 23rd pulse on Sunday night, a day and a half later then I generally try to schedule the start day/time (Saturday mornings).

6 and 1/2 months hmm looking for mobility

Well having spent the last almost 3 weeks on roxyi and rifamp (my other rx had not been renewed yet)I was subjected to great tightness and reduction in mobility. On the other hand I think my brain was even clearer. Now I got my period and i have gotten back to feeling a reduction in inflammationi this week. Makes a big differences cooked dinner without feeling deadlegged exhausted etc. I also have overcome the rifamp diarhea too. It ook me two months to overcome the doxyi/azith trots so the rifamp was not as bad. I am starting to think there may be some actual slow improvements even on the rifamp or maybe because of the rifamp. Lets see if the toes actually start to warm or not.

Chronicles of a Rifampinaut: The Sixth Sense

I'm into my fourth day of a 5 day pulse. I forget what count this is, maybe the 22nd or 23rd? I know that April signified my official 2 year anniversary since starting the CAPi with NAC and Doxyi, way back when.  And here I still am, no better then when I began and sometimes worse.

Now, that being said, I haven't given up on anything.  I think that maybe I'm just starting to really figure things out about the CAP and how it can work for me.  What I mean by that is this...

Up until recently, I've been going through the motions, being very diligent to take NAC and abxi on a set schedule.  I still am; however, now I think I've found something in myself that I wasn't aware of before, a reaction I wasn't noticing.

It's a Summerdale Gold Kind of Spring...

With Springtime finally here and things going so well for me I thought it was about time for an update. Since the inclusion of Prilosec OTC and Calcium Pyruvate six weeks ago I have improved tremendously! I also added in Inositol and Ribose, and have doubled the Norwegian fish oil caps to support my nervous system while I discontinue antidepressants. I am still waiting for the other shoe to drop but here are the changes: 1. Able to successfully discontinue Wellbutrin XL 2. Able to tolerate Flagyli pulses now [timely and full dose] 3. Able to tolerate 600mg NACi daily[first time since I began CAP] 4. Beginning to gradually reduce Zoloft and Trazadone 5. No more strep-throat type neck aches, etc 6. Previously chronic low grade temp. is now a RARE event

Chronicles of a Rifampinianaut vol. 5: So Begins the Age of INH

WinkYes, I broke into my stash of INHi from last fall and took my very first dose of INH tonight with my second dose of Rifampin for the day, hence the Rifampinianaut. Isoniazid is the full name of INH and I just couldn't bring myself to label myself the Rifampiniazid. Of course, if one want's to be completely accurate, I would have to also work in Doxycycline, Azithromyocin, N-Acetyl Cysteine, and Metronidazolei. Hmmm....the Metroxyzithricetylfampiniazid, lol!!! O-kee, D'O-kee, I think not, lol

Concerned with the future fate of my CAP

I went to see my Lyme dr for a monthly appt. and came back home all disturbed and worried. This was my 4th appt with this dr and I am still in the beginning phase of the CAPi tx. By this time my dr and I should be developing a working relationship but it's not happening. During appt he asked - Remind me, how long have you been sick? So I told him my story again very briefly. As I mentioned that I saw rheum dr before finding him, he asked - And Rheum didn't find anyhting? That surprised me completely b/c on my 1st appt with this dr I brought to him consult notes from the rheum dr stating the dxi and plan of tx (not CAP, of course but prednisolone & Sulfasalazine). I felt he didn't remember my case at all.

Rifampin questions

I am about to start Rifampin, Zithi and add Flagyli. For those of you who are on Dr. Sriam's (sp?) current protocol are you experiencing serious debilitating herxes? Also, how bad is the orange sweat? Can I not wear white shirts? Will it stain all of my clothes? Dumb question but there you go! I am curious because I have recovered to the point where I can work and do some exercise and wonder if I will be able to still handle my workload while going on this new adventure. Worried to be honest. Any feedback as to what to expect and best time to take meds away from vitaminsi would be greatly appreciated! Thanks! Chris

Drug resistant TB at new high

Drug resistant TB at new high:

http://news.bbc.co.uk/1/hi/health/7265464.stm

In a survey of over 90,000 TB patients in 81 countries, the WHO found that levels of multi-drug resistant (MDR) TB were far higher then expected.

The survey also found cases of extensively drug resistant TB which is virtually untreatable in 45 countries.

MDR-TB is resistant to at least the two most powerful anti-TB drugs, isoniazid and rifampicin.

As a result patients do not respond to the standard six month treatment and have to take more expensive - and more toxic - drugs for up to two years.

Positive for Lyme nothing helps

I have years of symptoms.  Some are excessive sleepines, flu like achyness,

pinched nerve in cervical neck with lots of degenerative changes.

Cold feet that feel like the bones are sore all the time.  Cold hands.

After almost 20 years of seeing Drs I found one that did some real testing.

I  did the test with HEMEX for fibrogen and it was abnormal with a genetic mutation.

I had some type of CFIDSi test that showed EBVi, HH6, CVM.  The same test also tested natural killer cells and sub sets and almost all of the immunei cells were either high or low.

Now I am middle age so the changes in my spine could be age and anything I use hurts like hands from holding a water hose sprayer.

Pain was not so bad until about 8 years ago.

Chronicles of a Rifampinaut vol. 4: post pulse 21 and still going...

It's been a long time since I've been around on the site but decided today to write something, so that I could record where things are and have it to refer to in the future.  I'm sad to say that I'm no better off now then I was 4 months ago, at least as far as I can tell.  There are brief periods where I feel really good but that's nothing new, I've had that since before starting the CAPi almost 2 years ago. 

However, I do have to recognize that I'm still relatively early in the use of Rifampin, having started it in late August.  I'm on the end o my 7th month of using it.   Well, maybe early isn't the right term but I don't have a darth of experience with it although that's in process.

Positive for BB?

When I saw my dr a few days ago we went over my labs results that had come back. The Western Blot for Lyme disease. IgGi was negative. Good news, right? But strangely enough, IgM was positive by both standards - unconventional Igenex (where the labs were actually done) and CDC.

I was floored, I really didn't believe that I may have Lyme.  The dr told there may be a false positive and we ordered a confirmation test with Igenex.

The reason I think it is strange to have IgM (+) b/c my sxi started so long ago and logically it's IgG that should be (+) if I have Lyme.

Should I add Rifampin to my doxy, azith and flagyl protocol?

I've been on the protocol since February 4, 2006. I seem to be at a stand still-haven't improved alot but don't seem to be regressing. Haven't had an exacerbation since I started the antibioticsi. I was having exacerbations every 6-8 months. Should I add rifampin to see if it kick starts something? I know in reading the information on this site that some people need a longer treatment period. Also noticed that some people are being told to add rifampin. Any comments are welcome. Linda (doglover)

Most mild CAP protocol in terms of side effects & die-off?

I started CAPi with Minocycline 100mg x 3 + Rifampin 300/day only to stop it due to huge reaction. My dr was thinking in the lines that's one of the abxi causing side effects, perhaps the Mino. Soon I re-started only with Doxycycline 100 mg x 2/day. At first it was OK but I had abdominal pain, aggravated hypertensioni, hypoglycemia and porphyriasi again and by 10th day it was too severe for me to continue. I mean, I felt like it was life-threatening at the time.

I stopped Doxy a week ago yet still haven't recovered completely. Today I feel that like I was hit very hard on a head but a bit better in general.

Brenda's Progress

This is for Brenda who finally, after two years of Rifampin and flagyli, got her Doxycycline. She has been on it only for two weeks and today called to say: My grandchildren told me that I am walking better. I can lie on my back and draw my legs up and push them out again without cramps. I can turn over. Today I carried laundry out and hung it on the line. The feeling that I am dirty and have to get in the shower every ten minutes because my legs have movement under the skin, is going away (this was undoubtedly muscle spasms). I have lots more energy. AND .... her grandchildren came home with honor roll report cards.
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