27 Apr 2018
Author
balha76202
Title

Who made a 75 % / 100 % recovery share their experience in short ?

Body

Hi all kind members,Could all members that had a 75 % / 100 % recovery share their experience in short ? 1. Which treatment ?2. How many months before seeing an energy real difference ?3. How many month before 75 % / 100 % recovery ? Thanks. balha76202 

Comments

Most of us are still in the process of getting there.   I suggest you read the patients' stories.   Tab at the top of the page.   You must understand that Dr Stratton who researched Cpn as a factor in people's health suggest that the treatment will probably last from 3 to five years.   As the website has only been going three years, there are only a small number of people who have completed the treatment.   Their stories and those of the rest of us who have seen improvements are to be found under the tab I mention above.

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

I'm at 90%. Though I was at 95% for a while, I've been above ~88% for nearly three years.

The primary caveat in my case is that I wasn't fully sick for very long before starting treatment. Suppose my degree of illness had always been between X and Y for 27 years, and then I started abx and soon begin to improve markedly - never to return to the range [X, Y]. Clearly, then, while a coincidental remission would be a possibility, one would feel pretty confident about abx being the cause of the remission.

My case is in contrast to that picture because I started treatment so fast. I had great difficulty doing full-time college work by February 2004, and by May 2004 was completely disabled, almost house-bound, and half-bed-bound with severe, highly-neurological CFS - though I had been going down slowly since about January 2003. Around 1 Nov 2004, only six months after reaching the nadir, I started combo abx. Another oddity was I had also had a pronounced two-to-three-week remission, in late Aug 2004, which was around 50%.

Modest improvement started within six weeks or so of first abx, but took almost a year to make life really livable. In sum, I doubt pretty strongly that my recovery was a coincidence, though it is not inconceivable.

Now I can run five to six miles most of the year, but not in the summer. I have fatigue in the summer, and bruxism and modest depression all year (depression and anxiety were very severe before treatment).

My general impression, taken from reading numerous internet posts (which obviously has lots of biases), is that the distribution of final abx treatment outcomes is not far from flat, though it may not be perfectly flat. "Flat" would mean 10% of the people have an improvement falling in the range 0-10%; 10% would have improvement in the range of 10-20%, 10% would have improvement of in the range 20-30%, etc. Thus 10% would end up in the range 90-100%, 10% in the range 80-90%, etc. Remember that biology and medicine are ugly sciences with sky-high complexity, and often, though not always, low reproducibility of measurments and experiments. So the subjective impressions of one dude on the internet using one method (which actually is not even a method) might be in sharp contrast to other data - and the other data might well be much closer to the truth.

It would be nice to have real, formal experiments done, but they may be some time coming, or a long time coming. Almost all existing abx experiments on CFS and other chronic illness use something well short of a "bombs-away" approach, where the latter refers to combo abx (preferably 3+) used for at least 2-3 years.

 

I think this summer I am at 98% of normal. I still have some issues with stiffness in the muscles above my right ear. My right hand is fine--no swellling, edema. Still a little nerve damage in a few toes. Energy levels are at about 98%. Sleep is blissful and refreshing--no more insomnia. No intestinal issues--everything is normal. No headaches,muscle cramps or swollen painful joints. I work out on the treadmill in the morning---do a mile at 3.00 and 5.5 incline then do Yoga for 30 or 40 minutes from a DVD. I now sweat like a normal person--a lot. Body temp. is now normal after years of 96-97º Eyes feel normal now--no aching, light sensitivity or weird visual effects at night. Very,very slight change in glasses prescription for the last 2 years.

This is after almost 3 years of treatment for Cpn and Mycoplasma P. I began taking the antibiotics on August 1, 2005 but did not begin pulsing with Flagyl until Sept or Oct. 05.

Besides the CAP, what things have helped me the most?

Infrared Sauna

Lutimax

Bio-Identical HRT

Low dose Naltraxone

B12 shots (much better than the oral tabs)

Vitamin D (sun and supplements)

Iodoral (iodine supplement)

Whey powder shakes for breakfast (with a banana and dried black raspberry powder)

Diet focused on organic vegetables, fruit, grains and fish (sometimes chicken)

Organic green Matcha tea, black tea

I have lost about 20 lbs of fat and retained fluids . I no longer have the Dowager's hump of inflammation behind my neck. Pictures of me at the start of treatment show a moon face--definitely sub-Cushionoid. All that is gone. My muscle groups show definition. I went from a size 10 to a size 4.

 How long did it take to see some results? I would say about a year to see some steady stream of good days as opposed to bad. I did come down with a viral infection (EBV) after the first year that set me back a lot. But that seems to have subsided.

Am I finished? I don't know. I am on day 5 of a Flagyl pulse and so far, so good. Not much reaction. We will see what the fallout is next week.

BTW, read my patient story.

 

Raven

CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

Also EBV and HHV6 

 

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

hi raven..

did u go after the virusesaswell..

and how

love chris

cfs,lyme,fibro..bartonella,chlamyd pn and trach,ricketsia,coxiella,hhv6,ebvdid jadin protocoll,marshall protocoll,npow on doxy200mg every day,metronidazole 1stpulse 8 days,start AZitr on saturday 21.11.08

Don't know. I had another Cpn test done but waiting for other test results before I contact my doctor.
Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Sunni- don't waste your money on repeated titers. Once you have this your titers are likely to be high as long as you are treating and still having symptoms and reactions from treatment. When you are completely nonreactive and go on intermittent treatment might be a time to assess titers. As long as you are killing Cpn you will have more antibodies to it, so the treatment itself will cause higher titers, and since it's a long-term treatment you'll have those for a long time.

I'm at 75-80% after a long time. My difficulty tolerating some of the more aggressive abx like rifampin probably has contributed to it taking so bloody long! On the other hand, I have a life, full work, moderate exercise (I'm jealous of Eric!) and can take on major house projects without paying for it for days. Lots and lots better, just not where I want to be. 

Raven, when I read how well you are and recall that a year ago in the midst of the EBV (before you knew that's what it was" you were thinking the CAP had failed you. It's one of the circumstances that I keep in mind when I read that someone has been on the CAP a while and is "getting worse."  I'm reminded how true Eric's statement is: "...biology and medicine are ugly sciences with sky-high complexity..." Thank goodness you had a doc who could encompass the complexity of what you needed!

Indeed, Jim. We both know our doc leaves no bug unturned.What an amazing guy. Glad to hear you have the energy to do all those house projects. They take lots of patience too.Something that is in very short supply when you feel rotten!

I may have to face another Cpn abx for the acid test. Will find out when I check in. I am still waiting for the Yasko methylation tests to come back. I'm convinced we will win this fight against this creepy little invader.

Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Raven, I have been wondering how it is going with the methylation support?  Louise

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

Louise

The methylation support is helping. I could not believe how much vitamin b12 I need. I am now taking

Methylcobalamin shots (3cc twice a week) as well as Hydroxycobalamin and Dibencozide (coenzymated B-12 from Source Naturals.)

I have a compounded glutathione cream I use once a day. (Also taking SAM-E , FolaPro and the other folate with B12)

I just began using the nitro patch (12 hours on/12 hours off) and I think it is greatly affecting the viral infections. I usually have some twinges of pain in finger joints from time to time that I attribute to viral infections because I had joint pain and swelling when I caught EBV. But now this has disappeared. I did have die off symptoms the first week or two---very tired, head ringing, short fevers and muscle pain and chills. Still have a few of these now from time to time. I am off the abx for now just to see how it goes with the nitro. I may still have to go back on the CAP but with a different mix I would suppose.

I just had Cpn and EBV tests done a few weeks ago.

Overall, I feel good and have lots of energy. Still have some phlem and cough issues in the morning.

Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Thanks Raven, any chance that you could cut and past your replies in this thread to your blogs area?  My variation of the Methylation support supplements seems to be helping me as well.   I won't say it is an official protocol, guess it is my emperical support.

I am interested in the why of the Nitro patch.  If you choose to answer in your blog I will be able to find this interesting information again Image removed..

Louise

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