Doff my CAP to cpnhelp.

Submitted by Elinor on Sun, 2009-02-08 07:49



Hello, I've been trying to write an update for ages but things keep getting in the way so I'll start here.......
After 3 years on the  Wheldon Protocol (with a break of a few months taking oxytetracycline and Ketek instead)   there were a few months when the abx stopped causing  any reactions at all, even three-week tini pulses were easy and uneventful.  The LLMD couldn't see any Cpn EBs or borrelia in a blood sample so.......  feeling good and with greatly improved energy it seemed the right time to stop. At first it was my intention to stop completely but after some reading i decided to continue the intermittent treatment for a few months, just to be sure
There were no noticable effects from the first two intermittent pulses, however it seemed strange to me that I somehow felt slightly better while on the antibiotics and looked forward to those two weeks.  Hmmm........what could this mean? Either I'm  not done yet or I've developed a psychological dependence on antibiotics (oohhhh if the doctor could hear me now!!)  That wouldn't be too surprising considering how ill I'd been, how long I'd been on the CAP and how much difference it had made. But it did surprise me because it was unexpected and you know, I thought I was above all that 'drug-seeking behaviour' blah...blah....blah
The next surprise I encountered was to be knocked down after 5 days of tini in the January pulse, feeling very rough. It didn't last long though so I thought maybe it was down to picking up one of the winter bugs that get passed around at christmas time. Not so; today is my second day on tini for the February pulse and yeeuch! this time it's unmistakable...only lyme, Cpn and/or antibiotics can make me feel this way.  There is obviously more killing to do.
I'm prepared to carry on with intermittent treatment for as long as it takes but it's quite puzzling to suddenly start reacting so strongly to the antibiotics at this stage and I wonder if these reactions would have occured if i had never stopped the continuous protocol to go to intermittent. Let's see how it goes.
A thought that occured to me on reading through some other blogs is how different our expectations are, it must have a lot to do with the different states of disability due to ME/CFS that we have started from but you see i was very happy, maybe even complacent, with my present position until I read Ron's remarks about having 'sufficient energy for my job and ordinary evening activities'  WOW Ron I am so happy for you but wildly jealous! Even now i don't think my energy is reliable enough to hold down a job (yet) and on the days when I do normal things like shopping or cooking or painting the bathroom (brilliant that I can actually do all those things) there is not enough physical energy left to do anything in the evening except to tuck myself up in bed and get on with my studying. If I plan to go out in the evening then daytime activity has to be severely limited so it would seem that there is quite some way to go to get back to 'normal' and for this reason I will continue the intermittent phase.
Without doubt I have made amazing progress, you can see how much by looking back at my earlier blogs especially this one
and this one 
I can only look forward to even better progress to come.

Elinor~congratulations and thank you so much for bringing us up to date.  It's so important and encourgaging for those of us who have ME/CFIDS to have confirmation of the cure/great improvement with CAP for ME/CFIDS 

We've had quite a few success stories of MS'ers... but the CFIDS people seem to either not be "reporting" or are taking longer... but hey, slow and steady is the race! 

Continued blessings and health to you.  Please keep us posted on your progess.


JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Great update Elinor! Thanks for keeping us informed.

I was looking through your old posts recently and I saw that 2 years ago you wrote:

"The vitamin D thing puzzles me too, we all seem to differ in our responses and there is conflicting advice. In my own case the sun seemed to make me very ill, though who ever knows for sure what causes relapses, my D levels are very low but I am wary of supplementing, I can't work out what to do about it."

I just wanted to ask whether you had supplemented D since then? If your D is still low then I'd recommend you up your D levels. That will do many positive things for your health and also give you some natural immunity against Cpn, so you won't have to rely so much on the abx.

If you want to test your levels there is a really cheap test available from the US (just over £20). It also has the convenience of just requiring a single blood drop:

Thanks again for keeping us updated. Its amazing to see how much progress you have made, but hopefully you have lots more to keep making!

Hunter: Don't think - experiment

Hi Elinor,

Thanks for the update.  

Before I read garcia's comments, my first thought was, "I wonder if Elinor's D levels were already low and the timing for winter would have made her more susceptible to low immune function knocking her down on the pulse... hmmm..."  

So I would agree with garcia on the D issue and especially since you say you are "wary" of supplementing with it, you're probably "in need."  Image removed.


NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!