Long Term Benefit Questions

Submitted by padeyas on Sun, 2008-02-17 20:08

hey everyone...  first, i am still a little confused as to if i should post a blog or comments...  whats the difference?  i am still trying to get use to navigating this site...  i do appreciate all the feedback..

 my question is, is there ANYONE that has been on CAP treatment over a year with NO benefits?  i sent e mails to some members (in the state of california) to ask questions about their current physician.  well, out of the 10 e mails i only got ONE response..  i am assuming (since its been well over 2 weeks) that theyre NO longer on the site..  it just seems if they had major benefits from treatment they wouldnt permenantly leave the site.  i am just reallllllllly curious if there are current members that have NOT seen any benefits after a year of CAP?  i ask because my current physician, after she re-balanced my hormones, said i would ONLY need 3-6 months of antibiotics..  though i dont think she is really competent with CPN or CAP,  i am just really trying to figure out if i need long term antibiotics..   i know my fatigue is still present and i know my immune system is drained (low WBC, low CD4, eczema)..

 well, i made an appointment with Dr. Powell in sac (mid march) and i am really hoping he can help make me feel more confident about CAP since holorf in Los Angeles never mentioned i had CPN..  though my titers were high in mycoplasma, they were confident that restoring my hormones would decrease any pathogen titers.. 

can any current dr powell patients send me a private e mail?  i'd love to hear a little more about his testing, protocol, etc.. 

i would also like to know if there is any permanent resolution to my skin condition?  ive always had nice skin, but after antibiotics it left me with , what seems to be permanent, dark marks on my chest, back and upper arms..  i am pretty sure its die off, but how long until i see ANY resolution? 

well, i know there are members with much more severe problems, questions, etc. and i truly feel like i am venting right now because this past weekend i had NO resolution to my fatigue and it also seemed to manifest into depression (which i never had pre antibiotics)... 

thanx for everything, i appreciate any input..



Keith, you are in very good hands with Dr. P!

There is a lot of information to take in at the start!  It does get easier.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Keith, Just a little perspective. Some of us are on cpnhelp on a daily basis and some don't check in regularly at all. Sending a private message doesn't mean it was received. (Sometimes I don't even notice I have new messages when I come to the site!) We all want answers 'yesterday' when we are newly diagnosed or just discovered the site (I know I pestered Sarah and David mercilessly when I found Sarah on ThisIsMS two and a half years ago.) It's hard to wait or to understand why others don't consider our questions their first priority. Here, on the public board, we do our best to answer when someone posts, though. I think, by positing your questions here, you'll get a few responses. And mid-March is not so far away, either! ;-) P.S. Venting is allowed.

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

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

I think alot of people become members, post a question or two, and only come to the site to ask questions..so, please dont take a lack of response as the CAP is not working for them. Actually, i think it is reverse. They are doing so well on the CAP, they dont need this site as much. ..

my depression came after I started pulsing with Flagy (which i'm in the process of switching to tini). It has been 5 weeks since my last flagy pulse, and this weekend, is the first time that my depression has lifted since I started pulsing in October. Also, prior to my flagyl days, I tried to increase my vit D beyond the 1000mg a day, and it brought be depression as well.

Remember, this is a 3-5 year protocol. It may take several months for you to notice improvements. I feel the first few months on the protocol are about finding balance between titrating up on your meds, adding pulses and handling die-off, porphoyria, herx. ect, and managing life..sometimes we feel worse before feeling better....then sometimes we feel better and all of a sudden a pulse will be extra hard ........for some of us, the protocol is a ride on a roller coaster instead of a ride on merry go round.

Mphs, TN. CFS, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpn, myco, EBV, CMV. on NAC 5000mg, doxy 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyl.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

We don't really know if it "didn't work" for anyone as no one has posted this after being on the CAP for any length of time. But this is, of course, a biased sample. Better to ask the doc you see what his failure rate is with people who have similar profile to yours.

My impression of Holtorf, via his setting the medical plan for the FFC clinics (he was medical director before Teitelbaum took it over) was that, while they tested for a wide array of pathogens, they had a very limited understanding of complex infectious treatment. For example, the protocol was then and still is to treat Cpn with 3-6 months of tetracycline. Period. It was only because I convinced my doc at that time to go against the Holtorg's algorithm and use the Wheldon protocol that I got a CAP going. That still is the official protocol of the FFC clinics, as I have a friend being treated this way now who has to convince his doc to read the Cpn information and consider doing it differently. And, no, balancing your hormones is not enough by itself to cure your infection!

Dr. Powell is quite expert with understanding not only Cpn but also the variety of organisms that patients can be dealing with, very much in tune with the CFS/FMS/RA set of patients he sees. He also will explain things very well, but the array of agents he uses and the amount of information he gives can be a bit overwhelming at first. If you can bring someone with you to take notes, it will make your visit easier and you can digest the info over time.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, INH 150mg, Magnascent Iodine 20 drps/day, T4 & T3


CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

"it just seems if they had major benefits from treatment they wouldnt permenantly leave the site."

Well, that's not necessarily true. In fact it might be just the opposite. People leaving this site might actually be a good sign. I, myself, am guilty of leaving a forum precisely because I recovered. When I was first diagnosed with hypothyroidism I spent a lot of time in one thyroid forum. I had a lot of questions, concerns, gripes about doctors, etc. Should I take Synthroid or Armour? Would I get better? How long would it take? The same sort of question was often posted there, in fact. Why does it seem no one is posting about getting better? Does no one get better on thyroid meds? Well, it turns out, they do leave when they recover and are not around to tell us how well they're doing. So it appears no one is getting well if you just read the majority of frustrated and frantic posts. Now that I've found my correct thyroid medication and dose it's become a non-issue and I really don't think about it much any more. I don't visit that forum very often nowadays. I pop in once in a while to offer a little encouragement or give an update but I don't spend nearly as much time there as I used to. You have to keep in mind that these forums do not represent a fair sampling of the general population. I think the majority of people posting in forums like this are doing so because they are new, frustrated, and/or scared. Those who get well will just go on their merry way and enjoy their new life. There are only a few saints who stay behind to offer encouragement and advice to newcomers on a daily basis. So the fact that many people have left might actually be a good sign that they have found a new life and have gone on to live it without having to think about their illness (and this forum) every day.  

Asthma, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

Yes there are people who have seen improvement with a year of treatment, some of them are still here some of them have left, some of them are still here but only post infrequently, my daughter is one of them.   She does not post here very oftem, as she finds it difficult being dyslexic.   But a year is not a long time and she for one has been on the protocol for nearly two years and will be for another two I reckon...

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.


You might care to look in Patient Stories for other people, like myself and David, my husband, who saw considerable improvement after a year. 

If you get better, why do you need to carry on posting?  I only do because I want to get the word out about this hardly known treatment..........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

When I started the CAP, I could not sign my own name.  This is because I had "forgotten" how to write a cursive "D".   To get a signature the bank would accept, I had to have my wife sign.  I've only been on the CAP for about six months and I can sign my own checks  again.   

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zith (3 x week). Fourth pulse metronidazole completed 1/23/2008.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

To hijack or not to hijack - hd, I stood at the post office for 20 minutes one day trying to send my daughter a birthday card, couldn't remember how to do it, came home and copied her name and address on a piece of paper, went back to the post office, stood in the SAME spot, copied the information onto the envelope, and finally mailed it. All this took about 4 hours - the post office is about 4 miles from home. I am so glad you are better. I understand where you were; it is a sad place to be, though at the time I didn't realize it.


Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 49 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Padeya-Don't give up!! In my situation-MS-it took a good year before I really noticed any changes. Now I think much more clearly-I have more balance-I can do more, not much, but more, I haven't had an exacerbation since I started and I was having them every 6-8 months and I can get up from my wheelchair much easier. I've been on the protocol for two years now and really feel this is the year I'm gonna really show improvement. So don't get discouraged if you don't see improvements right away-they will come. If there is no wind..............row New Hampshire USA on CAP since 2-4-2006 for MS Currently on doxy 100mg, 2x day, azithromicin 250mg, m,w,f and 500mg flagyl 3x a day for five days every three weeks.
If there is no wind..............row 12/26/2010 Presently not on any antibiotics. Just supplements. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.