INH

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Isoniazid- niacin related compound used to treat tuberculosis, found by Stratton et al to have powerful antichlamydial effect.

Pulse 21: Tini this time- A kind and gentle start

I went into pulse 21 with some trepidation, having been slammed by pulse 20. Pulse 20 was the first one I had done with the addition of Rifampin (still only up to one capsuye a day). I mentioned in my last blog that Dr. Stratton told me that the addition of Rifampin  created a 'physiological conflict' for the Cpni ie leaving it no pathway of escape, so I had more die off. I also had more post-pulse effects, a lot of apoptosisi and inflammationi. I finally figured out that I also had a build up of porphyrins as my anti-porphyriai efforts had been lax. I hadn't seemed to need them the prior couple pulses, but with bigger die off, bigger porphyria. So just before I began the pulse I did a Vitamin C flush and felt much better after. My body soaked up a lot of Vit C before gut clearance, at least 15 grams, so I was probably depleted in this as well. Really brings down inflammation and brain fog!

Astrodiana's story: Cure from Chronic Fatigue Syndrome with Dr. Stratton's original protocol

In 1998, just as Dr. Stratton was dismantling his research lab, a client of mine told me about him.  I simply didn't have the strength to even consider it, but she had been on the protocol for almost a year, and was feeling great. I had known her for a few years and I knew that she had terrible brain fog, lack of strength, was completely lacking in energy and unable to function in daily life. This began for her about 10 years earlier in college.   Her Dad is a doctor, and so he had sent her from doctor to doctor of every type imaginable, all his friends and she wasn't getting any help to speak of.  She looked and sounded like a new person when she called and told me about Dr. Stratton’s research with Chlamydia pneumoniae... and she arranged it all for me and got Dr. Stratton to agree to test my blood....I went to my doctor and got the blood draw and had it Fed-ex'd to Dr. Stratton’s lab...three weeks later, I got my results:

Liver Enzymes Back to Normal

Hooray!  My liver enzymes came back normal at the end of last week so I will go back on the antibioticsi protocol next week.  I'm looking forward to this as I've been rather nervous about stopping the antibiotics.  So far I've been off the protocol for 2 weeks with no adverse events.  I've had a few nights of spasms but didn't require much anti-spasm medication and this has been the case for some months now.  My walking at worst is now 800 meters compared with 5 meters or 400 meters on average this time last year.  My right hand is still numb.  My left foot burn is relatively inactive.  My movement-induced phosphenes are extremely rare.  I haven't had bad swallowing problems since last summer.  My bladder is still a bit hesitant/urgent and for most of the week my sleep is disturbed because of this (no change in a year).  The stiffness in my right leg has been back for several months so I need to pause after standing up to wait for the stiffness to dissipate.  On the whole I'm fairly stable with some small improvements (degree of foot burn and phosphenes) over the last few weeks.

Astrodiana's Remission from CFS/FM in treatment with Dr. Stratton

Diana was one of the last people tested at Vanderbilt before the Cpni lab closed and was evaluated and treated by Dr. Stratton with the help of her local physicians. Her full story is fascinating as it charts a course many of us with CFSi and FM are all too familiar with. She also provides so glimpses into the bigger studies Dr. Stratton participated in suggesting up to 50% of CFS patients may be Cpn related.

Astrodiana has her full story at this link:

http://www.phoenix-cfs.org/Story%20Diana's.htm<

Diana will be condensing this story for this site, but in the mean time I thought you'd like seeing the original missive. 

Kicked off the INH and Rifampicin for 1 month

Wow - it's been a bit of a shocking week since my doctor called to tell me to come off the isoniazid and rifampicin immediately due to chemical induced hepatitis.  I am not to take any antibioticsi for at least a month and to avoid all alcohol for the same period until my liver funciton is restored.  At least I won't feel so sick!  However I am nervous about stopping the antibiotics just because I still get flares when I take the metronidazolei which sort of suggests there is still infection there.  Ach well yesterday my walking felt really great although I didn't get far as my hayfever was so appalling that I had to go to bed!Frown

Monthly update

This is my latest update. I've just started my 18th pulse of metronidazolei which still makes me feel quite quite sick.  I'm on isoniazid and rifampicin and amoxicillini too.  A few weeks ago I added doxicycline and roxithromycin into the mix in the vain hope that these would help with my hayfever.  This is because last year I had no hayfever and was on these antibioticsi.  However I was also on beta interferon 1a last year so maybe that's why I didn't suffer so.  At any rate after a week I stopped adding doxicycine/roxithromycin. 

My left foot burn has hardly troubled me at all over the last few months which is great.  My walking is now at worst 750 to 800 meters which is also great.  However I can't seem to get much beyond 1.25km before needing to rest.  My right hand remains still troubled with numbness.  The stiffness in my right let is still around but not so severe.  My movement induced phosphenes have also all but disappeared.  I have definitely improved since last summer.Smile

Updating very nice-looking new site - well-done JimK

Just a quick update.  I've just completed my 16th pulse of 5 days.  I've been on abxi since April or February 2005.  I switched from doxicycline/roxithromycin to INH/rifampicin at the start of January 2006.  My walking feels GREAT!!!!!! Well, actually it's still not 100% but over the last few days I've walked over a kilometer with ease.  It feels more normal.  The right leg is still not quite right though but boy oh boy am I over the mooon.  I've even started thinking that in 6 months I might even run.  But mustn't get too excited.

 Typically though my spasms have flared up just as my walking improved!!  I've had spasms all week although they are not as bad as last year.  My foot burn continues to be mild although sometimes it flares up usually at the same time as doing a pulse.  The movement induced phosphenes are currently not occurring but I'm never too sure about these.  And in fact they are so minor that I don't care about them.  My right hand remains pretty much the same although recently some odd sensations and pains have occurred.

INH (Isoniazid) Safety: Some references

INH is used by some Cpni doctors, especially due to it's efficacy in the Mitchell/Stratton studies. Because of a potential for liver toxicity, and early reputation that it is significantly so, it's safety among most doctors is considered low. However, more current studies using large cohorts in public health for treating TB have shown different results. I've excerpted the conclusions and given links for a couple studies below.

The following study of over 11,000 people looks at long term safety of INH for treatment of TB, which requires long-term use. I just quote the conclusions and give title and link:

Hepatotoxicity Associated With Isoniazid Preventive Therapy

INH (Isoniazid) Safety: Some references

Pulsing INH

I can't tolerate INHi full-time. I'm on Doxycycline and Zithromax, which is going smoothly.

Can one pulse INH+Flagyli if you're not on Rifampin? Or is there some danger in that?

Any thoughts appreciated.

(I look over to the left and I see *104* guests online! Amazing!) 

 

Nasty INH Reaction?

Hi there! I'm a newbie here...Also new to Cpni treatment (Started in January). I am a patient of Dr. Powell's...

A question re: INH...I am currently taking 1/4 of a tablet every other day. Within an hour of taking the INH on an empty stomach in the A.M.; I experience major diarrhea, a hot/flushed face, body chills, extreme dizziness & sometimes nausea! EeeK! Is this an Endotoxini reaction & do others have this happen? It's hard for me to believe that such a small amount of AB causes such a huge reaction!

This A.M. was a particularly rough morning. Finally, after taking my charcoal; I started to feel better & more able to function.

I also battle with extreme "fatigue attacks". Is this a common reaction to this treatment?

Forgive me if my questions are answered somewhere in this site! I have done some reading here; but I don't see a lot of discussion on INH & NACi reactions. Thanks in advance for any input/ help. 

A year down the line

I'm very pleased with my course so far.  I switched to isoniazid, rifampicin and amoxicillini at the beginning of the year and have so far completed about 11 pulses of flagyli over the year or 10 months of taking antibioticsi. (I started internet antibiotics a year ago but UK prescribed pills in April 05).   My osteopath today said my bad right leg was better.  It certainly feels better and I managed last week to hobble about 1.48 kilometers which is longer than I've managed in ages.  My left foot burn is mild and has been pretty much all year.  My night spasms are still very very infrequent.  The stiffness seems to be dissolving; it's less regular and less acute.  Compared with a year ago I have definitely improved quite a bit.Laughing

Unpublished
n/a

Finished 7th pulse

Monday was my 5th and last day of this pulse. Had about two days of feeling achy and fatigued, third day mildly crappy, and the last two days felt much better, more energy.

Now the day after the pulse I have a mild stomach bug and feel fluey, tired and nauseated-- but the same thing has been through other family members, so I know it isn't from the Tinii pulse! Just "normal" crappiness. When I told my wife I dismissively that was "just" having a bout of the stomach flu she kindly said, "Well, you  struggle with feeling bad so much, you could use a break instead of getting the flu too."

I have to say that this pulse felt a more difficult than the last one, and I think it has to do with the extra effect of the INH. Just a suspicion. I'm still only on 150mg of it, and will ramp up next weekend perhaps, but will also be doing the Tini pulses every two weeks, following Dr. Powell's protocol. So there will be a report on my 8th pulse sooner rather than later. 

First pulse on INH, rifampicin, amoxicillin

It's my 3rd day of my 11th pulse altogether and my 1st pulse on the INH, rifampicin, amoxicillini combination.    I've been on antibiotics since April 2005 (or Feb 2005 if you count internet-ordered abxi).  At the moment I would say that I've had two neurological symptoms disappear or nearly disappear.  These are the night spasms and the funny l'hermitte type signal in my right kidney area.  Otherwise my walking is pretty lame and the burning sensation in my left foot is still there on and off although it has perhaps become less severe and less frequent.  That could be wishful thinking though!  I don't think my walking is much worse/better than when I started the antibiotics, which means no progression.  Good.

 My nice doctor has prescribed 80mg Lipitor and more melatonin">i for me.  He said he enjoyed our meetings since "it's like doing a medical viva"  (oral exam) which rather pleased me.  He referred me to gamma 1 laminin research at Helsinki university which I'm going to try to examine shortly but any thoughts on this would be interesting.

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