9 Nov 2018

How did you feel before starting your first pulse


My mom is already 2 months into CAP treatment. So maybe it is time to think (not starting though) about the next step - pulses. But I wanted to ask you how did you feel before starting pulsing. Did you have any positive moments, of feeling better only based on Doxy+Roxy/Azith so that you know you are on the right track? I am asking because up till now she didn't have any moment of feeling better and we are starting to question if we are doing the right thing. She also didn't have many worsening in the symptoms, which as many suggest are hints that you are fighting the bacteria.


Loby, I think that everybody can feel different here: I felt the worst for my first couple of weeks. I also felt that something was happening within a few hours of taking my first dose of doxycycline. Most people take much longer to feel anything. At the same time, I had one of the lowest readings of Cpn, but I'm guessing that by then it was moatly stored securely in my brain cells, rather than floating around in my blood stream. 

At the same time, when I started pulsing, I felt very little for the first pulse, more for the second but was in excruciating pain for longer than just the third.  So, if your mother feels up to it, she ought to start pulsing after the three months, going gently at first. then see what happens.

One other thing is that she might benefit from taking some high dose biotin, the details of which you can find in my blog.  I started taking biotin a few years ago now, to see if I could get any further improvements, and I must say that I have.  I am getting up and down stairs better than ever.

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.

It seems like I have always related to your case, where as far as I understood, your brain fog was cleared only after a week of taking Doxy and was hoping to see the same or some other improvement. But as you said, everybody can feel different.
I will have the biotin in mind! Thank you, Sarah!

Here for my mother. She has been having neurological and other health problems that were unexplained for many years and just recently a test showed positive for Cpn and Mycoplasma. Still trying to understand more about Cpn, treatment and possibly start it soon.

Loby, I developed MS in my early twenties, but I was in my mid forties before it became very progressive. When I started CAP I was getting worse by the day, so maybe I was able to get out of it as quickly as I was getting worse. This is something that nobody can really know, but before the progression started I was pretty healthy by and large.

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.

Hi Loby,
As you say, we are all different, but ...
Within a couple of weeks of Doxy and Roxi i went, with my husband, for a dog walk, matching him step for step, but I quickly regressed and further improvement came much later, but be assured, it came! Patience!

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Just my two cents... my asthma disappeared with the doxycycline. When I started the protocol and was only on the doxy and the azithromycin, I didn’t really experience anything. Although the fatigue got alleviated from the B 12 sublingual. I think I took 5000 mg cherry flavored. And I would take five or six a day. The pulses ushered in a different story. I think my second pulse I got really sick. The rest of my symptoms gradually improved but there were times that I felt like giving up. Like nothing was working. I am so glad I stuck with it. I am on pulse eight right now and have improved!

2003 Asthma diagnosis - 2004 took doxycycline per Dr. David Hahn work - asthma free. 2014 developed upper body myalgia/arthritis and asthma returned. Dec 2015 c pneumonia bloodwork IGG titer 1:512. Took 6 months of doxy for asthma flare up - again asthma gone but myalgia stayed. Dec 2017, extreme fatigue started. Emailed Dr. Wheldon. Research on cpnhelp.org - Jan 2, 2018 started Wheldon protocol.

Good for you, Trish! Stay with it through the whole thing. Yes, you can feel horrible sometimes - but what other choices are there? My only regret is that this was not available years before.

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