Blog posts

Home again, on pulse number 4.

Submitted by Todybear on Tue, 2008-08-26 17:35
So I am home from my trip and managed well till I got home. After the first night at home I wakened to a tremendous fatigue and troll like symptoms. I managed through the unpacking and laundry etc, then decided it must be time for a pulse. It is a couple days early but after the last one I felt so good that I am striving for that again. I did 1000 mg yesterday and today, and I will see if I can last for four days in total. I definately feel some dieoff today, but I am not complaining; I hoped for that. My feet are burning, I have nausea off and on and what I call rubber legs. I took melatonin last eve and I slept for 12 hours nonstop. I will repeat that tonight as I don't sleep super well on Flagyl. So all in all, no bad stuff to report; just plugging away at the CAP.

Catch 22

Submitted by garcia on Tue, 2008-08-26 11:13

I've been on CAP for close to 18 months now, with not a whole heap of progress. The main problem is that although I have the drugs to hand which work, and I have put in place all the supportive stuff, I have severe adrenal fatigue.

What that means is every time I pulse (with tini) and get a significant reaction, I get severe inflammation and an adrenal collapse. This makes any kind of progress nigh-on-impossible.

Its annoying because my disease-state is such that I would otherwise really benefit from higher dosages. Also I feel great whilst on pulse. Its the post-pulse reaction which my body cannot tolerate.

At the moment I'm stuck in a vicious circle:


Submitted by CiggyLou on Tue, 2008-08-26 10:24

I began coughing several months ago and remembered that I had several bouts of walking pneumonia as an adult.  as an infant, my mother told me that I had severe asthma, but grew out of it. However, each time I caught a cold, it went straight to bronchitis. 

I began coughing several months ago, and steadily got worse.  I badgered my FNP, to please start me on the protocols that Dr. Weldon used for his wife, to see if this would relieve/cure me.  I am getting information to her and she has been so willing to assist me.  THANK GOD! I still have more info to get to her and am so pleased that I am beginning to respond to the meds..the coughing has left and I can now sleep..I still occasionally have a minor wheeze..but NOTHING like it was.

7th pulse

Submitted by loriyas on Mon, 2008-08-25 17:27

I finished my 7th pulse today but it is now changed from flagyl to Tindamax.  What a difference this pulse was!  I had very little reaction to Tindamax compared to how I felt after the past flagyl pulse.  I had one day (4th out of 7) where I was more tired than usual.  But not wiped out like flagyl does to me.  Also no nausea like I experience before.  And it doesn't taste yucky!  If I tolerate this well the doctor wants me to go for 10 days, which I  would do after the next pulse or two if things go well.  The only thing that worries me is if Tindamax is actually doing anything.  At least with flagyl I believed the "feel worse before you feel better" mantra applied.  What would be awesome is if Tindamax works just as well without the side effects of flagyl!

another pulse feeling pretty perky

Submitted by jak7ham9 on Mon, 2008-08-25 12:59
Guess this would be pulse 11. Surprisingly I feel pretty good. I am in mid pulse and really quite energetic. i stopped the ldn to see if my spasticity/ tightness would improve. I think it has somewhat. Don't get me wrong I think ldn is great stuff bt with people like me with tightness tendency it sems to increase it. Surprisinly my energy level is up and I am waking earlier. I had some relief in tightness for a couple days over my period. I am tight but not horrible. I am also not sleeping constantly. Roxu 150x2 , doxy 100x2, flagyl 500x3. Upped the fish oil. Oh deffinately since I started munching the nystatin any urge to urinate issues have disappeared. I hope this is the beginning of an upward trend.barbara

Poosh's Blog

Submitted by poosh on Sun, 2008-08-24 14:21

Hi everybody,

I'm Poosh.   I have  had CFS for the past 20 years. I've tested positive for antibodies to mycoplasma pneumoniae, and Q Fever phase II.  I'm also positive for Epstein Barr, Herpes Virus 6, and CMV.

So far no antibodies have been detected for Chlamydia, but I suspect tht sooner or later they might show up.

Ihave no idea what the Stratton/Wheldon protocol is, but, I sure would like to learn and is the protocol appropriate for me?

My doctor started me on Doxycycline twice a day, but I haven't begun yet because I'm being tested for Lyme next week.


Party time

Submitted by Michèle on Sun, 2008-08-24 08:54

Well its party time, nearly....

I was going to send Cpnhelp a bunch of flowers but in the attempt managed to punch out every subsequent blog entry so here is the place to send your best wishes and wise sayings.

HAPPY BIRTHDAY CPNHELP.   Thanks a bunch for your very exsitence, your continued support and the community you created.

New UK member - advice required

Submitted by Bob on Sun, 2008-08-24 07:28

I was tested positive for Chlamydial Pneumonia in 2005 (had cough, flu like symptoms etc) and was treated with Azythromycin for 14 days. Felt a little better for a while but symptoms returned. Tested again 12 months later and told that I no longer have the disease, but I am showing anti bodies (so I had it but not now was the thought) so in their view the treatmet was effective. Had another 14 days of Azythro a year later and again felt better for a few weeks. Since then I have been suffering continuing and increasing symptoms and have had most of it written off to prostatitis! I am not sure and feel that it is Cpni still deep rooted.