Actually, 6 months and 2 days... the 27th of September marked six months of my being on CAPi. As Ruth mentioned in a previous post about herself, I am no longer a newbie! I am now reading posts of those coming on board, reflecting on my past experiences! It's a strange feeling indeed -- firstly, to realize how many of us there are "out there". It is wonderful that people are finding this website -- the word is getting out.
As I read of those coming on board it's a curiosity to gauge the different levels of tolerance the individuals have. Some are able to ramp up on the meds quite quickly and others, like me, struggle to build up to each level. I guess this is also indicative of our unique immunei systems and the CPNi load each of us carries.
I feel I am "over one of the humps", in that, I have achieved the full dosage of doxy and azith. My stomach problems, after adding the azith have calmed down, my bitchiness (tourette's syndrome, LOL) has subsided quite a bit. I added the azith about 6 weeks ago. I remember when I first became diagnozed in March and TRIED to take 1 azith tablet, I couldn't --- it was terrible. (Thanks Michlele for your support back then!) I still have brain fog/cognitive issues, extreme fatigue and fibromyalgiai (especially my neck, ankles and hands). I'm pretty much non-functional outside of the house, which is very frustrating. I still do not drive by myself other than to the local mini-mart or the movie store), I have days where I have to use an electric cart for assistance, and am unable to grocery shop by myself. It has been sooooo long since I have woke up feeling "good" .....even when I was sick (and didn't know it), I felt better -- weird isn't it?
When I do have a really good day (like last Sunday) I felt truly normal and overdid it! I do pay for it as I've been down since. I have a difficult time pacing myself when I have a good day because they have been so infrequent 
My right knee is again swollen to the size of a baseball and I am unable to walk on it. I did have it x-rayed (when this happened a couple of months ago) and there is nothing "wrong" with it, so I can only surmise that it is an area where the endotoxinsi like to accumulate. It is very painful. (Rica I remember you saying you had major joint problems -- they are not fun!) I never injured that knee, but was thinking I worked in an office for over 30 years and always used my right leg to "push off" with my chair.... hmmm...???
Okay, I don't mean to sound like nothing positive is happening, just noting my "different" symptoms at this stage. I believe most of what I am experiencing now is die-off/endotoxini reactions to my body tolerating the dual CAP. I have starting coughing again which is strange and am trying to determine if it is the CPN being aggravated or fall seasonal allergies ( I live in one of the top 10 areas of the US for allergies!!) Additionally, I need to have my thryoid (and reverse T3 levels) checked to make sure they are getting back into the normal range (I personally feel FM symptoms may be worse because my levels are out of wack). I do not have a thyroid and never in 10 years had any problems with my levels fluctuating (am on Armour) until I started CAP (Jim thanks for interesting input on thyroid and CAP)
I have not been as diligent as I should be with my anti-porphyriai regime so I only have myself to blame. (NEWBIES take note -- take your supplementsi!!!) I hate taking the charcoal, so am going to try the Chorella instead.
I have had only one severe sinus headache (on my left side) since I started cap and I used to live on Tylenol Sinus DAILY. I am hoping that the CAP is working on those darn bacteria in my left ear that caused my balance problems (can't remember the word for it!) last December. Many days, I hear what sounds like a swarm of bees in my ear!
I look back at my journals and realize that I AM much better than I was 6 months ago, but I still have a long way to go (which is frustrating for me as I am not a patient person.) I long for the day when I wake up and FEEL GOOD, stay awake the whole day without a nap, remember where I put my keys , be able to socialize, and can drive wherever I want ! It will come... just not sure when, LOL! I am thankful that my husband is as loving and patient as he is as it has been a burden for him.
Sooo, in closing to those of you ahead of me -- Geesh just all of you!!... I want to truly thank for you patience with me, my questions, and your always supportive and many times humorous answers. This site has kept me afloat. To those of you behind me -- hang in there -- this protocol does work... it isn't easy or fun but it's proven.
Be well and blessed,
Jeanne
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVii. CFIDSii/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tiniii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup
Well! Jeanne, this is
Well! Jeanne, this is looking good. You will be flagyllating soon I expect. Knowing how ill you were I suggest that you think long and hard about the dosage and timing of your first pulses. And expect the unexpected...
Come back to us when you are seriously considering it and we will talk you through. A good start, I too noticed an improvement in my sinuses, although it is not completely gone, but good enough for me to be able to breath through my nose, rather than my mouth...
Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Jeanne, thank you for the
Jeanne, thank you for the detailed update! As one of those behind you, but not too far behind, it's very helpful to get all these details as they're happening. After finally ending my 3 months of the huge Cipro dose along with 1200mg NACi per day, I've now been on the doxyi for only 12 days at 100mg per day. It only took about one week for the stomach problems to subside, but I did get a small taste of what it will be like when I add the azith and increase the doxy. Also, I only just started yesterday to take all the supplementsi I should have been on all along. I had to research and order everything, and I now realize I should have been using the supplementsi first, not second. I'm hoping to feel some help from them after awhile. I'm going to be getting some charcoal on Monday - I'll find out whether I hate it or not after that!
Congratulations on sticking it out this far, and congratulations on being able to take the azith now. It had to be scary to try it again! I'm so glad to hear you can look back and realize improvement from when you started, and I hope that 6 months from now you're even closer to the day you've been longing for! Please know that you're helping me!
Finch - Western PA USA
ME/CFSi since 1991 - CPni diagnosed June 07 - began Cipro 760 mg 2x per day - added NAC 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 100mg 1x per day on 9/18/07
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Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
We have to be patient - I
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 46 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA