30 May 2019

CAP seems not to work for me ?!


Sorry before: I had to delete all paragraphs, because only the first was visible. Is this a known forum problem?

Edit: Seems to work now in the following post.


I've been diagnosed with a Chronic Fatigue Syndrome by a neurologist and besides the heavy fatigue I have tingling in my face and extremities, muscle twitching, light and sound sensitivity, blocked nose, some lung problems, mucus going down my throat and other things. MRI from brain and lumbar puncture was completely fine, so MS or other neurological diseases are rouled out.

My Cpn antibodies are high, at the moment IgG > 200 (normal < 10) and IgA 140 (normal < 10). They have been so high for many years now. Extensive testing for other bugs like viruses is negative. I tried herbs and (single) antibiotics because of suspected Lyme disease (which I probably don't have - tests are negative) for years now.

Now I'm doing some sort of CAP for 9 months or so, at the moment Azi + Mino + pulses with tinidazole + pulses with rifampin. When I take tinidazole my symptoms get better while I take it, especially the blocked nose, lung problems and my muscle problems. The fatigue and tingling does change only a bit. After stopping tinidazole pulses, all comes back in a few days. On the other ABx (azi, mino, rifa) I don't really feel a difference.

My Cpn antibodies don't go down, either. IgA even increased between the last two measurements from 100 to 140  (normal <10). So neither my antibodies nor my feeling shows some substantial improvement although doing CAP for months now. I'm really a bit desperate now and have the fear the Cpn won't ever go away. I'm 35 yrs, no normal live with friends, working, family, sports, etc., staying most time of the day in bed or before the computer.

I have to say that I didn't take NAC because it gives me allergic like reactions like heat feeling and itching shortly after taking it (may have something to do with histamine release?). But I think even without NAC I should see some improvement. If I know it right, Sarah took the NAC also lately in her treatment program and made good progress even without NAC?

Has anyone else experiences with Cpn and CFS? Is it normal that there is so little or no improvement? I have to say that I'm ill for at least 20 years now, so the Cpn had much time to settle everywhere in my body. I think this might make the treatment much harder like if you had the disease only for 1 or 2 years. But my health, especially the last 4 years, definitively detoriates.

I'm also in doubt if the Cpn got resistance against Mino and Azi, because I took these ABx because of suspected Lyme disease as monotherapies over months in the past.

Hi Markus!

I had been taking N-A-C for a couple of years prior to starting CAP.  I used Jarrow (brand) N-A-C Sustain.  I had a rough reaction to first doses.... similar to yours.  It seemed to be a histamine response.  I backed off and researched, and came to the conclusion that I had some sort of Mast Cell activation problem...

I started taking L-Histidine (600 mg/day) to help control "allergic reactions."  It had an immediate positive effect.  I continue to take it to this day.

But the L-Histidine wasn't enough to control the Mast Cell degranulation.  I have great difficulty taking any antihistamines.  I can only take a micro-dose at night (of the H1s)... and can't tolerate the newer ones.

I still needed something more powerful to control my mast cells.  On an autistic blog I read, the author uses Verapamil (a strong mast cell stabilizer as well as a blood pressure med) for his son's allergies.  This has been a very effective treatment for years.  I also started trialling it several years ago and continue to take it.  

When allergies are very high, I need something in addition to the L-Histidine + Verapamil ... so I take Nettles---capsules are good but short lasting.  But Nettles have no side-effects for me.  I also make a Nettle Infusion (drink) which is a very effective (short-term) antihistamine--very tasty too!

Sorry for being long-winded.  I think you might have a better response to CAP if you could get N-A-C in your system.  

I just started my third tablet of regular N-A-C a week or so ago (I am trying to build up to 2400 mg/day)... and had a similar response albeit milder to yours.  I think it may take two or three weeks until my body has acclimated to the higher dose.

If you think that CAP is the way to go, then don't give up.  The therapy is a marathon, and often we all take two steps forward and back one.  Be kind to yourself.   






56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Rifampin is NOT for pulsing.  Either take it every day or do not take it.  Read about it.


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