Cpnhelp.org

I started with metro, first pulse (full pulse, except first day) I did not feel many reaction. Some depression or bad mood, which dissapeared relatively quickly and few days after pulse I felt some pain in my "bad places" in the body. But it was not extremely strong and I recovered quickly. I started second pulse and during the pulse I had some cardio problems and felt pain in my heart, but again not so strong, mostly intermitent. But few days after pulse it hit me really hard. From hour to hour I came down with terrible depression, strong pain started in my neck, shoulders, back, I got strong migraine,  pain in my abdomen worsened and felt like having flu for couple of days. I was recovering very slowly, more than month I still felt consequences of pulse. And my depression lasted and lasted for weeks. Before third pulse I was really afraid about what metro brings, so I switched to tini and took 2x500mg for five days. It was very different from metro. I had much more energy during pulse and no negative feelings. After pulse I felt again some pain in my "bad places", but it was manageable. No negative mental changes (I continued with medc against depression, which I started after second pulse). After this third pulse something happened in my body, I felt positive change in my worst place- in my abdomen, pain decresed significantly. It was first time I felt something like this and was happy. This positive change is still lasting, so I hope it will continue. Next pulse I plan again tini, but I am short of it, so will have to swich to metro after. We can compare it after more experiences. It seems to me like good idea starting with tini and then switching to metro more prepared with lower cpn load.

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

Lala

If this had been available at my beginning I may have done the same.    I am happy that you are started on the next part and look forward to a better, healthier future for you and wish you great success. 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

I am currently in the middle of my first Tini pulse (Day 3) after doing 5 "pulses" (not all full 5 day pulses & only 500 mg each day) of Flagyl. So far. I have noticed a HUGE difference in the 2 AB's! My reactions to Flagyl were very strong...In fact the last pulse was pretty nasty...symptoms included nausea, decreased appetite, depression, fatigue & evening anxiety on Days 3-6. So far, the side effects of Tini have been mild.

There have been a few changes to my supplements tho' & the addition of Provigil for combatting my extreme fatigue, so it's difficult to know if I can really compare the 2 types of pulses accurately. But I imagine that if I was to have a strong reaction to the Tini, it would happen anyway.

My new supps/ changes are: upped doseage of Acetyl-L-Carnitine to 1,000mg daily, upped Boron doseage to 9mg daily, upped NAC doseage to 2400mg daily, added Entrox (Perilla Seed Extract), added Indole-3-Carbinol, & added Curcumin. The new supps are supposed to help with Endotoxin-related symptoms, energy, mental clarity & hormonal issues. So, either they ARE helping or the Tini is easier for my body to tolerate...or it's a little of both!

I will post again after I've finished this Tini pulse & have let a few days go by post-pulse. I'm certainly hoping the mild symptoms continue!

BTW, the Provigil totally eliminated my severe Fatigue Attacks! I was hesitant to take a stimulant medication, but desperate times call for desperate measures. I only took 1/4 of a pill in the A.M. After about 5 days; I actually felt  slightly "hyper", so I'm taking a break from the Provigil to see how long I can go without the severe fatigue returning. Without those fatigue crashes 2-3 times a day, I feel so much more close to "normal"! (Something I haven't felt in 13+ years!) It wasn't until I had fatigue/ crash-free days that I could really think clearly about the progress I have made on the CAP! I am optimistic that I'm improving enough to really feel inspired to continue on the protocol! Amazing what a boost energy can be to one's outlook! (Even if it is drug-induced!)

More later...

Hugs,

Annie 

Primary Dx:FM x 13+ years, On Dr.Powell's Cpn Protocol since 1/06, Currently taking NAC/Azithromycin/Tini/Oodles of Supps, Northern California.

Day 3 Post Tini Pulse....

Hi again! Well, my first Tini pulse was a breeze compared to the previous Flagyl pulses! I took 1 Tini in the A.M.'s on Days 1-3 of the pulse. I was feeling so terrific that I upped the dose on Days 4 & 5 to twice a day. No problem!

Here's what I have experienced so far...

During the Tini pulse, I felt great! I was energized with an amount of energy that I haven't felt in many, many years. At first, I thought that I was feeling wide awake from taking a low dose of Provigil for 4 days prior to the pulse. But I discontinued the Provigil & the energy remained! The only explanations I came up with for going from MAJOR Fatigue Attacks daily to high energy were: 1) A miracle 2) Provigil had an effect on my brain/ body which somehow lasted 3) Doubling my doseage of Acetyl-L-Carnitine/ alpha lipoic Acid helped and/or 4)the Tini has an energy-enhancing effect? I'm baffled. Any guesses? Instead of trying to figure it out, I've decided to simply rejoice & enjoy my newfound energy!

Other Tini pulse symptoms were: bladder irritation/ pain, felt "yeasty", so I took Diflucan, & an increase in muscle/ joint pain.

Since Day 5 of the pulse, I've been having multiple, loose BM's (sorry), which is not typical for me. Yesterday I had some mild, transient nausea & the return of a Fatigue Attack (just one). Today it's more GI rumbling/ action & joint/muscle pain, but nothing terrible.

My reaction to low dose Flagyl was much stronger than the Tini. (So far) During my last Flagyl pulse, I had depression, anxiety, nausea, fatigue, lots of tingling, & increased muscle/joint pain. It was nasty.

So, I guess time will tell if the Tini pulses continue to be gentler on my body & mind.Hopefully it's still killing off the Cpn! It is interesting that some people here have had the reverse reactions...More symptoms from the Tini vs. the Flagyl.

Well, that's my story so far. If things change drastically, I'll update this.

Blessings,

Annie

Primary Dx:FM, On CAP since 1/06, Dr.Powell's Protocol, Currently on NAC/Azithromycin/Tini/Oodles of Supps,Northern CA.

 I noticed a pretty big difference in flagyl/metronidazoles generic versus brand name side effect wise when I took them for a different infection. The brand name was easier on me nausea and metallic taste wise.

 Its possible different brands may cause different hardships side effect and kill off wise.

Wow, glad you "bumped" this post! Guess I should really update this as my Tini pulse experiences sure did change! My first pulse was easier for me than the previous 5 Flagyl pulses. The next 2 Tini pulses were NOT so kind!...I blogged this on another post:

Symptoms During Tini Pulses: 

Increased Pain 3/3 pulses, Urinary Bladder Pain 2/3, Irritability 2/3, Fatigue 2/3, Headaches 2/3, Tinglys 1/3, Decreased appetite 1/3, Slight Anxiety 1/3, Major Depression 1/3 (during pulse that was 500mg twice a day), Increased TMJ pain 1/3, Dry eyes 1/3, Nausea 1/3, Migraines 1/3, Body itchiness 1/3

Symptoms Immediately Following Tini Pulses:

Increased Pain 3/3, Fatigue 3/3, Decreased Appetite 3/3, Nausea 2/3, Body Itchiness 2/3, Dry Mouth 2/3, Very Low Energy 2/3, Tingly Head 2/3, Low Blood Pressure/ Light Headedness 2/3 {e.g. BP : 74/46!}, Meunstrual Spotting at weird time of cycle 2/3, Stomach Pain 1/3, Vomitting 1/3, Excessive Intestinal Gurgling in lower right intestine 1/3

Sounds like fun/ a good time , huh?!!!

So, as you can see; I experienced pretty nasty symptoms during and after the Tini pulses. I am currently on a CAP "vacation". (Instructed to do so by Dr.P's office.) My stomach/ intestinal problems have subsided since I am not swallowing 80 pills a day. Yesterday, I started back with taking NAC. This time; I'm going to take it SLOWLY! I am going to add back Azithromycin, Niacinamide, Curcumin, Lutimax & Tini pulses...I am planning on adding one at a time, spaced out by at least a week each time. This way, I'll be able to tell what exactly my body is reacting to! All I know is that before my "vacation", my bod was on overload!

Blessings,

Annie

Primary Dx:FM, On CAP since1/06, On Dr.Powell's protocol, Currently taking: NAC, Northern CA.

Hi Annie, my last tini pulse (4th of tini) also hit me hard. I experienced pain completely in all my body. As you wrote- lower right intestine-it is place, where I feel pain constantly for years. And gurgling every day. Anybody else? It is also place of appendix, where lots of immune cells is concentrated. So maybe, that is why we have problems here..infected immune cells in our right lower intestine- only idea..

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

Annie, I also had my appendix removed 11 years ago and since that I have had problems till know. Pain in right intestinal and big painful cramps after main or bigger meal. During the operation they cut through my normal gut by mistake and then I had big inflamation in my abdomen. I was on second reooperation, but they did not find anything unusual. It seemed to me, that inflammation continued for years. Now I have cramps only occasionaly, my digestion improved greatly and I feel big activity in this place constantly, much worse always after pulse. They also told me it is "psychic"- which is nonsense. I am not suprised, that we had problems with appendix, if infected immune cells concentrated in our appendix realeased many EBs, everything seems to be logic.

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

> gurgling every day. Anybody else?

It was fairly mild in degree, but I had it going all day every day, every 5-15 seconds. It would still be going when I'd wake up (which was 7-15x per night). All cleared up nowadays.

Yes me too, gurgling and pain everyday..

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

> gurgling every day. Anybody else?

During a pulse and immediately after (2-5 days post-pulse)

Ron

On Stratton protocol for CFS starting 01/06 (NE Ohio, USA) Currently: doxy, zith, Flagyl; 4days on, 7 days off.

lala,

 It could be adhesions from surgery? Scar tissue basically. But when they get removed it frees up things and feels much better. Problem is any abdominal surgery can lead to adhesions, even the surgery to remove them. Wonder if the cpn gathers in adhesions as well.

Looking for reasons to convince my doc for Flagyl I found this thread.  This is really funny. I have this gurgling so extreme, that I have let a laparoscopy be done. They loosened adhesions, but gurgling remained. It disappears with antibiotics and I still cannot imagine what this may be. I asked for maybe a lot of fibrine, but they said that they saw nothing which would been worth to mention. Very strange.

Anyway, is there a place where the effect of metronidazole is mentioned in detail? I know it is supposed to work on the cryptic form, but how? I may need some further information. My doc was very interested in NAC and maybe he is open for all the suggestions. But he goes into detail and won't spend much time in reading. I would have to have it in short terms.

gitta, Germany 

Postinfectious arthritis, CFS, Asthma, Hypertension, Zith since 20th Sept 06 -  first 3/7 500 mg, since Nov 06 reduced to 3/7 250 mg. Doxy since Nov 06 - 200 mg per day, NAC 600-1200 per day

gitta, your doctor may think this page is "just right"; concise and professional.

http://www.cpnhelp.org/?q=wheldon

I like the graphic approach: look at http://www.cpnhelp.org/?q=simple and print the picture that is just after #4 on the page for your doctor.

Ron

On Stratton protocol for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Here is a good comparison review from Medscape on Tindamax and Flagyl. 

Several posters here have remarked that Tindamax is better tolerated than Flagyl - makes me wonder if Flagyl may hit people harder with porphyria Vs Tindamax due to P450 metabolism. 

The data seems to be conflicting on how each drug is metabolized. 

This review from Medscape says "In an in vitro study, tinidazole was not observed to inhibit hepatic cytochrome P450 enzymes. " 

From Tindamax PI labeling,  "Tinidazole is biotransformed mainly by CYP3A4. In an in vitro metabolic drug interaction study, tinidazole concentrations of up to 75 [micro ]g/mL did not inhibit the enzyme activities of CYP1A2, CYP2B6, CYP2C9, CYP2D6, CYP2E1 and CYP3A4. "

From March 2007, The Annals of Pharmacotherapy on Flagyl - Link

Elevated plasma concentrations and toxicities have been reported for a number of CYP3A substrates including amiodarone, carbamazepine, quinidine, tacrolimus, and cyclosporine when administered with metronidazole. This has led to the widespread belief that metronidazole is a significant inhibitor of CYP3A4. However, 4 pharmacokinetic studies conducted in humans showed that metronidazole did not increase plasma concentrations of the CYP3A substrates midazolam, erythromycin, cyclosporine, and alprazolam, thereby refuting the suggestion that metronidazole is a CYP3A4/5 inhibitor.  

Either way, we start Tindamax tomorrow.  Perhaps less porphyria???

Daisy - Husband on CAP 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Diflucan

 Ah, HD, there's an old saying: "So, did you mean to be rude, or is it just your way?"

Daisy- I've always wondered about the differences in response to these agents. This might explain why early on I couldn't tolerate Flagyl at all, because of porphyria and probably liver Cpn, and now I can though it makes me depressed! I still prefer Tini. Always more to learn.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tini 1000mg/day pulses; Vit D2000 units, T4 & T3

Thanks Daisy, I will be waiting and hoping that the Tini makes a difference with your husband's secondary porphoria.   I look forward to any more posts you have to add to this topic and do want to be sure to log in now to follow it.

Louise USA.CFS.CPn Positive.BbPositive.WheldonCAP6/24/07.NAC,Doxy,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxins. 

Metronidazole made me vomit the first year on CAP. Tini didn't make me vomit, but it was much more expensive.
Combined Antibiotic Protocol minocycline, azithromycin, metronidazole for muscle pain, insomnia, interstitial cystitis, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

I did my 1st tini pulse about 2 months ago: 3- 500 mg pills over 2 days. The first one was a breeze. I slept for two days, had a bit of a headache and then was fine. This 2nd pulse produced sinus pain, aches and tinglies in my legs (especially the broken ankle) and tiredness but not sleep. About 3 days after the last pill I beame weak, sleepy, extremely depressed, unable to limp as well as before, and now, 2 weeks later, my sinuses hurt from the top of my head down to the glands under my jaw. And I am tired and weak.

Still, it's better than flagyl!

I finished the primary 4 beginning years of the treatment. These years showed me that the protocol made me feel like a non-human as there is such a tremendous level of the inflammation, that after these beginning 4 years of my treatment, I can say that I have hardly managed it.Now the protocol is more managable for me and I even added a high quantity of vitamin D.My body still feels completely rottened but at least I can manage this regimen without so much pain.I hope I could eventualy get rid of this dramatic disease witin 12 years.

Crippled, please read my reply on your last post and act upon it........................Sarah

I think my condition is an emergency, I can't work because of the severe brain fog and exhaustion and I was having tachycardia of 125.  what kind of reaction could I have to rifampacin and isoniazid?  it's the standard treatment for TB? I have read your liver can be damaged on rifampacin, but maybe I could try short coursesis there a CPN or Lyme's doctor in NY I could go to? 

You are damned right about an emergency, so go and see a doctor! Rifampicin and INH are standard treatment for TB, but not for a short period.  Once you start on rifampicin you have to stick with it.  If you are in New York, there are doctors everywhere.  I thought you were in Indonesia or somewhere so where are you?...........................Sarah

Kent, please put the old site back because this is just not working: we are going to  lose a lot of very ill people! Please listen to me!!!

You are so sweet Sarah... 

Is there no patch to work with while Kent works on this new version? Could we create an email and parallel working on it till the site is finished? (Though with a MAC - Safari, works pretty good).

Maybe a message in the 'Home' of CPNHELP saying something as "We are working on the website please contact .....@cpnhelp.org? 

Maybe Kent could give an approx deadline about the site completely finished? This would give him some time...

I have just been coordinating one single website in my old job. It gave all of us such a stress that we almost surrender. Finally it worked and we were pretty happy with the results. (the process was long and tiring though). :) 

Again, if I can help anyhow (easy stuff... brain still in recovery) I am here. :)