First CAP anniversar, progress report and thoughts...

It's hard to believe but I am on 13th month of CAPi treatment. I started on January 02, 2008, twicked my protocol a little for a couple of months. Since March'08 I settled on Doxyi 200 mg/day and Rifampin 600 mg/day. In Nov'08 Bactrim was added twice a day. 2 weeks ago I switched from Doxy to Minocycline. So, right now I am on Mino + Rif + Bactrim.

I am kicking myself for one thing that I have not started Flagyli pulses yet. I find every excuse under the sun - too sick, too busy, got to go to work, have social obligation that I can't jeopardise, you name it. But the truth is, I 've been afraid to have my old die-off reactions back. However, on my last appt with my LLMD, he gave me (once again) rx for 2 weeks of Flagyl 500 mg x 2/day. That his new protocol now. He tells it won't be effective if taken less then 2 weeks. So I have to start it sometime this week so I have something to report to him on my appt in Feb.

During entire year on CAP I never had any problems with antibiotics (abxi) in regards of developing yeast/candida issues, diarrhea or constipations although they are considered common problems of  abxi overuse. I'd say it's not overuse that brings them on but incorrect use, especially without probiotic. I took at least 35 bln 14-strain probiotic a day diligently. Some abx interfere with my absorbtion of Synthroid, I battle this issue daily, keep seeing my endocrinologist often and adjust my doses. It's worth it.

My improvements since start of CAP:

COMPLAINTS THAT ARE GONE ( and would've been forgotten if I didn't write them down in my notes):

Dermatitis of eye lids.

Ear pain and blockage

Feeling that my head is stuffed with cotton, swelled and woozy. I am not talking about brain fog here, this was something worse.

Chronic unproductive mild cough.

Muscle pain. Disclaimer: this one disappearred completely very recently (2-3 weeks?), so I am holding fingers crossed it won't be back.

GREATLY IMPROVED:

Restless legs syndrome. These past 2-3 months I sleep pretty much undisturbed except for occasional aggravations.

Fatigue and brain fog. Unless my hypothyroidism acting out and that happen often. Sometimes it's hard to differentiate really. But even then it's greatly improved because it used to be there ALWAYS.

Joint pain/tendonitis. Oh boy, can I brag here! ALL my joint pain is gone except some very residual feeling of tendonitis in my hips and that after serious GYM work-out and I still have a big deal of plantar fasciitis in the right foot. The right foot is just driving me crazy. It often feels better for a few days and all of the sudden worse. However, that's the only area of joint pain that is still bothering me and it's not swollen anymore like it used to be and I have more good days with my r.foot than bad ones. Occasionally I also have some reasidual "nerve" feeling in my right elbow where I used to have bursitis but I can't call it a pain really.

Sinusitis - 60-70% improvement, I guess. During the day I don't feel my used to be constant post-nasal drip anymore. However, I still get up in the morning slightly stuffed up on right side and blow nose in the morning for up to a couple of hrs.

Pelvic pain improved in first few months of CAP about 50% but  stalled since.

NO MEANINGFUL IMPROVEMENT:

Hypertension">i< - actually it's probably improved because it used to be uncontrollable and now it's under control of meds and occasionally I have to skip meds for days and weeks due to sudden normalization period. 

Bladder - I used to get inflammations and UTIs since childhood. Right now I'd call it overactive bladder and it doesn't seem to get better.

I wanted to write some more but I have to stop now because it's taking so long. I'll have to continue later in a new blog...

 

 

 

 

 

 

 

 

 


 

Comments

In addition to my 1st post

In addition to my 1st post in this blog a couple of more improvements that I completely forgot aabout!

They ve been gone for months:

Heartburn.

Upper abdominal pain attacks. - This was a medium to severe pain that was not diagnosed from what origin. A complete upper abdomenal u/s diagnostics were done but no stone or stenosis or any signs of inflammationi was discovered in my liver, galbladder, pancreas or kidneys. All blood work was OK too. It started may be 8 yrs ago or so with attacks of pain in my right upper area where liver/gastric is with radiation into right throat and midclavicular area. In severe episodes into right eye as well and head. I would be crawling with pain and advil would just take an edge from it. Usually late evenings. Sometimes would come in series of a few in a week, sometimes once a month or disappear for a few month. One time it disappeared for a year or more. When my arthritis started in 2007, it came back and tortured me often.   One of the drs told me it's a possible colon issue. Where the colon is pushing into the liver part and then makes a turn, he thought I have an ulcer there or inflammation.

Well, last time I had this pain was this past September and it was a very mild episode. So, it's been close to 6 months  that I have'nt got it. May be it's gone for good!

In the paragraph of no meaningful improvement I should add my heart palpitations

And unfortunately, I've got a light pain back in my left knee 3 days ago, I think due to switch from doxyi to Minoi. That deserves a separate post.

 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Nata- well, that

Nata- well, that description of "sleeping through it" is certainly not encouraging of the method! From talking many times with Dr. Stratton, I'm inclined to agree with you on the ideal of "Rif + INHi + tetracycline or macrolide/ aminoglycoside + Flagyli at least. May be + amoxicillini as well." I've done INH for part of my protocol, now I'm working up the guts for the Rif.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Nata- very interesting to

Nata- very interesting to hear your improvements and your protocol. How on earth do you sleep through the rif reactions? Usually reactions wake me up. If I could take it and sleep through them, it would be great and I'd be on rif immediately!

I have a hypothesis that your use of rifampin for so long may mean you've nailed more Cpni before it could convert to cryptic formi. Rifampin is fairly bacteriocidal at the dose you are using, and interferes with Cpn just as it's converting from EBi to RB, so it may not be able to get to cryptic form, which is after all an "abberrant RB" in the scientific literature. You may be the test subject that will tell us something about this. Do let us know how the flagyli goes.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim, Re: my protocol.

Jim, Re: my protocol. Before I found this site I read Dr Stratton's patent online. They way I understood it, one has to use at least 3 antibiotics + Flagyli-type antibiotic for anaerobic stage. Rifampin is named there and is also increasingly mentioned in other papers for Chlamidial treatment. BTW, TB treatment is very similar in terms of many abxi used at once. I am a true believer in that approach and I think the best CAPi for Cpni is Rif + INHi + tetracycline or macrolide/ aminoglycoside + Flagyl at least. May be + amoxicillini as well. Hammer it as much as you can take right from the start though it's one of the things that's easier to be said than done.

However, it would be very hard to tolerate that strong treatment initially, so I scaled down to 2-3 agents at the time with Rif  most important of them and no INH. Right now looking back I think I shouldn't have scaled down because I have a feeling that some of my symptoms are resistant to my current CAP. Got to come up with some changes rather soon.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Jim, your comment about

Jim, your comment about sleeping thru Rif reactions brought a smile to my face. (I am glad that finally now I can smile reminiscing about thst time in my life.)

You are absolutely right Jim, I didn't sleep completely thru these absolutely horrible reactions. However, with proper help of supplementsi and comforting measures one still can go thru the night easier and sleep at least part of it. In the beginning, I took Rif 30 min or less before bed, may be prior to reading in bed and would wake up almost exactly 1 hr into my sleep with racing heart, BP spike, spasms all over and muscle twitches, severe cold-to-the-core feeling just to name main offenders. My hubby took me to ER once, by the time we got help there and did all testing and waiting I got better and they didn't admit me. B/c I wasn't admitted, insurance didn't cover and we had to pay hefty bill.  So some of those nights we would drive to ER and just stay in the waiting room to see if I'd get dangerously worse. That's when I made a brilliant  observation that a warmed blanket in a triage feels good and relieves some of my reaction symptoms. 

So I applied it at home. Got an electric heating pad out of the closet, bundled up into heavy robe, wool socks and hugged my hubby for additional heat source. Took liquid valerian root supps before bed and during the episodes and took Labetalol (beta blocker) before and during episodes. Took extra Vit.C and Bs first few months of CAP. Tried to sleep and eventually did drift asleep. 

After awhile these episodes diminish in intensity and frequency. If I remember correctly, I experienced intense ones well into May'08 - that is 5 months into the CAP. I still get them but rarely now and in much milder form than before. I guess my report sounded too rosy when it's been in fact a very thorny path so far and it ain't over yet.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

In addition to everything

In addition to everything else, I'd say the hypertension">i has had real improvement, too. If the unfixable problem has suddenly been affected, even temporarily, by this treatment, that's a win in my book. Like everything else with this protocol, improvement comes in fits and starts and eventually the good days should outweigh the bad ones.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Last July my BP suddenly

Last July my BP suddenly dropped to normal and I had to discontinue BP meds and for over 2 months I was hypertension">i-free. That was spectacular and gave me a high hope that high BP can be cured. But in September I got a big aggravation of my arthritis, fatigue and BP went up again with a vengeance. So my hopes got crashed.

But I did see that improvement and as temporary as it was I agree with you, macK, it was there.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Arthritic~  Thanks for

Arthritic~  Thanks for posting your journey!   I am glad that you are seen good improvements!   May you see many more!

Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Hi Arthritic ! Are you

Hi Arthritic ! Are you taking the rifa in a single 600 mg dose - or divided in 2 doses a 300mg?
Male 38 years (Germany),CFIDSi, IBSi, Enterovirus, Cpni and Bartonella, Dientamoeba fragilis positive. Started Capi on 02/19/08, Currently taking Bactrim, Flagyli, soon adding Malarone and Clindamycin for suspected protozooa. 

Hi, Cesare,I am taking Rif

Hi, Cesare,

I am taking Rif in a single dose of 600 mg at bedtime. Rif was very strong in first several months of taking it in regards of side effects and die-off reactions unless you sleep thru them.  This is how my dr recommended taking it and it did help. I also was building up to a full dose in the beginning may be for a 10-14 days and at that time taking Azith 300 mg x 3/week.

It's also easier to take it in one dose for me because I take my meds with an interval of at least 1 hr in between to reduce nausea and taking one drug fewer in the morning is easier for my routine.

Hope it helps.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Congradulations Arthritic

Congradulations Arthritic on your first anniversary and the improvments that you list.  In the past two months I have taken several extended pulses, the first 14 day and the second 21 day.  I take Tinidazole 500 mg twice a day (which is the full daily dose for CAPi).  I chose to take it in place of Flagyli and side effects that involve stomach distress have not happened ever with this medication for me.    I also do not take charcoal for the same reason around stomach distress, I take the cholestyramine and because of it I believe that my post pulse symptoms have been minimal.  My doxyi challenge with stomach distress still exists, tried last evening to take my doxy tablet after supper and was nauseated within half an hour.   I have to take it right in the middle of my meal or I am still at risk of feeling ill.  

I hope you continue this blog as many with your kinds of symptoms may like to hear more about your progress.

Let us know how the pulse goes.     Louise  

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thanks, Louise. In a year's

Thanks, Louise. In a year's time I never got used to Doxyi, always some level of nausea, though much lesser with food. Now that I switched to Minoi, I enjoy being nausea-free. However, Mino caused off-balance feeling a lot, especially at first. This side effect seems to be disappearing now. It was worth to switch from Doxy to Mino even though they are the same family abxi. After just a few days on Mino I felt a new level of joint pain reduction. Now I am thinking to switch from Rif to something else, may be Levofloxacine, not sure yet. After all, I've been on Rif for entire year now.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/