For those who have been reading about my progress, I have a report that will amaze even the cynic in you.
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Hormone Levels test results...
Submitted by farandwide on Thu, 2009-07-02 18:22.Okay, I thought I would post something about the test results I got today for the blood test that I had done a couple of weeks ago. The results just came to me today.
First, something the nurse said who drew the blood gave me a little pause but we went with it anyway. She was concerned that maybe the test should be done at certain times of the day but wasn't sure and since the doctor's orders didn't say anything about that, we went ahead with it.
06/24/2009 5 PM
June update
Submitted by Timaca on Tue, 2009-06-30 22:12. Here is my June update. I will be on oxymatrine 19 weeks as of tomorrow. I am also on acyclovir for other viruses and doxycyline for Cpni (Chlamydia pneumonia). I had the best month ever since being ill (5 1/2 years).
I rank my days (1-10 with a "1" being in bed and a 10 being back to normal--which for me was being very physically active). Most of my days have been around a 3 (meaning life is an effort) to a 4 (meaning I have some enthusiasm for life). In the month of June I had 18 days that had at least part of the day ranked as a "5". I could count on one hand the number of days in the last 5 1/2 years that were a "5" prior to this month. SO....significant improvement.
I rank my days (1-10 with a "1" being in bed and a 10 being back to normal--which for me was being very physically active). Most of my days have been around a 3 (meaning life is an effort) to a 4 (meaning I have some enthusiasm for life). In the month of June I had 18 days that had at least part of the day ranked as a "5". I could count on one hand the number of days in the last 5 1/2 years that were a "5" prior to this month. SO....significant improvement.
A little rain - a poem by me
Submitted by clammed_up on Mon, 2009-06-29 22:33.A little rain - a poem by me
They say when it rains it pours, I guess it was time for a storm.
I long for the warm tropical sun, the beach and the sunset that calls to me endlessly
Knowing what i know now, could i even return without always looking over my shoulder
10,000 things I feel and useless expression for them.
Without an outlet, for the consequence of this, which no one could empathize with
and it wouldnt even be their fault
The desperation to be heard isnt what it used to be, it doesnt matter to me anymore
Nothing else matters except the fight, its tunnel vision.
The minor distractions, the weight, heavy even, can never compare to this brick
Tested for Lymphoma
Submitted by lee mcghee on Mon, 2009-06-29 11:43. I had a biopsy today for Lymphoma. Ill have results by tomorrow. For the past 2 weeks ive had swollen lymph nodes, fatigue, muscle aches. and nausua. Hes just ruling out other sicknesses. My doc already knows I have a cpni infection. Pray for me.
caffeine pills, etc.???
Submitted by loulou on Mon, 2009-06-29 11:18.Hi Everyone,
I still seem to be going downhill, unable to walk without walker, etc. etc.
I realize tht Dr. S. says it can take 3 years to respond positively to treatment with antis. and that is fine. When does one accept that enough is enough?
MSi is for sure a multiorganism disease but I am getting totally discouraged. I can't even get a glimmer of improvement. All the prescribed charcoal seems easy. I remain profoundly constipated each time I try the massive doses as dr. s. instructs?
Originally, I was just seeking cessation of bad symptoms. Now, I am losing hope and that is a bad thing, I am sure.
Drunk on a glass of Chardonnay
Submitted by Miying Meng on Sat, 2009-06-27 16:47. Hi everybody. I have been doing pretty darn good after my first two weeks in the month pulse sickness faded. So I had a birthday celebration drink last Thursday evening when my dear husband took me out for dinner. First time in seven years I have been well enough. Yay! Anyway, I drank one glass of wine with a meal and I was a giggling idiot afterward. I got out of the restaurant okay. But we decided to take me for a walk before driving home. LOL Oh my gosh. Everytime I looked at my darling man and he gave me one of those looks of his ... I just cracked up. I almost ended up sitting on the ground peeing my pants. What's up with that? It would take a bottle to get that tipsy in the past. It was crazy. This sickness has given me a fatty liver so is that the reason?
What to do About Antibiotics
Submitted by Elaine on Fri, 2009-06-26 11:16.I began the CAPi treatment on my own four months ago in hopes it would help my rapidly advancing Parkinson’s. At the advice of a nutrition-oriented doctor (she was not in favor of using abxi), I took supplementsi for quite some time, but experienced no improvement. The disease then began to advance so rapidly that I became too debilitated to see a doctor (the fatigue is phenomenal); so I started the CAP treatment on my own (doxyi and azith) with the hope of improving just enough so I could get to a doctor that would start me on the flagyli pulses (I didn’t want to do that without a doctor’s supervision). Unfortunately I have still gotten worse, and at a seemingly more rapid rate.
Pulse number 5 and survived the beach
Submitted by worriedmom on Sun, 2009-06-21 21:38.We returned from the beach today and I am happy to say all went well. Before the trip I was worried about how my daughter would deal with the sun sensitivity issues associated with doxycycline. Thankfully, her conscientitious efforts to apply sunscreen regularly, lots of time under the canopy, and several cloudy days all combined for minimal discomfort. She got a little bit of color but no sunburn! Ironically, she came down with a cold about half way through the week and that was a bigger problem than the sun. Despite the sniffles, we had a great trip!
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Newly Diagnosed and Questions
Submitted by peaceplease on Sun, 2009-06-21 13:49. Hi:
I see a LLMD for possible Lyme. He tested me through LabCorp for CPNi. My IGAi levels came back very high and he said that means I have an active infection. I suffer from Interstitial Cystitisi, Chronic Facial Pain that started with an acute sinus infection, various areas of nerve pain, transient hip and muscle pain.
I have a few questions:
(1) Does an elevated IGA mean I am actively infected and could I spread this to my husband, children etc via a cough? I never, ever get coughs and when I am sick with anything upper respiratory it always goes to my sinuses.
Flagyl Qs
Submitted by dkep11 on Sun, 2009-06-21 11:59.Hi all
Sorry if this appears twice - I thought I submitted it a few minutes ago, but now I don't see it...
I'm on day 47 (just Dox and Zithi), gearing up for my first Flagyli pulse in a few weeks, and I have some questions:
I've talked to a couple folks who have been on Flagyl who say it's no fun & you *must* have some food in your stomach when you take it... does that match your experience? I currently take the Dox and Zith at about 4am and 4 pm on an empty stomach... do I take the Flagyl with the other abXi? If/when I do, do I need some food in my stomach too?
IS VİTD3 SO HELPFULL?
Submitted by kerem aytan on Thu, 2009-06-18 17:45.Since I was a strong supporter of VİTD3 supplementation, I feel responsible to post that report which is very supportive for Marshall protocol. I'ıı try to discuss this issue with Dr. Stratton to decide whether I should go on taking high dose VitD3 supplemantation.
Hi, i am not receving any post, mail or anything from the cpni site can someone help me to get the info from the site. Jen