Chronic Fatigue Syndrome

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Syndrome characterized by viral or chemical onset, unrelenting fatigue, unrefreshing sleep, sleep disorder, immune abnormalities.

Paula To Start Glucose Saturday (hopefully!)

When Paula wakes tomorrow, I am going to give her a very small amount of glucose in a 75cl bottle of spring water and build her up like I did with the ribose earlier in the year.  I will do this when she wakes, as this is the time of her greatest energy for the day (not that it's very much though).

I plan to do it like Reenie advised me below:-

Paula's 24hr Urine Thyroid Results

Volume = 3000 ml                           Ref range = 600-2500

T3 = 639 pmol/24h                         Ref range = 800-1800

T4 = 1634 pmol/24h                       Ref range = 1800-3000

T3 % mean ref. value = 49.2

T4 % mean ref. value = 68.1

T3/T4 ratio = 0.39                           Ref range = 0.63-1.00

Which of the CAP supplements are anti-cpn?

As we are trying to reduce the porphyia load that Paula is currently suffering, we are also cutting down on the supplementsi.

Does anyone know which of the supplements on the CAPi list are anti-cpni?

I understand that Quercetin, Vitamin Di, Alpha Lipoic Acid">i are, which I have cut out.  Which other ones are?

What about ones that aren't on the list like Chlorella and Tumeric?

Thanks in advance,

Mark

CFIDs patient also with CPN- what to do ????????????

I have had CFIDsi since the 1980s and am now on disability because of it.  I recently moved across the state, and thus have a new doctor.  He ran all new tests, and referred me to this website when my EBVi Ab VCA, IgGi and EBV Nuclear Antigen Ab, IgG tests came back extremely high.

I have gone through so many treatments over the last 25 years, all without impacting my exhaustion at all.  I am hesitant to commit to a new treatment plan that I might have to be on for years.

Paula's Current Porphryia & Fatigue Hell!

Almost 1 week after starting the Chole, things haven't gone as well as hoped.  The main reason for this has been life stress.  Paula's 13 year old daughter is now a typical teenager, causing myself and Paula massive amounts of stress.

I haven't been taking this stress very well at all.

Anyway Paula has stopped taking Doxyi and the Samento now.  She is taking the Roxyi split into 2 doses on an empty stomach, which she now has immediate reactions to.  She takes the Chole about 1 hour after each dose of Roxy.

She is still taking the 2 sachets of Chole twice per day, which does seem to lower her porphryins.  Unfortunately the stresses mentioned above seem to have cancelled out most of the Chole benefits.

Porphyria Hell!

Paula has had some bad days this past week.  There were times she thought she was dieing.

Those dieing like symptoms were:-

A) Rapid heart beat that wouldn't slow and she would wonder if her heart would take it.

B) Her fatigue would get so bad that she would have trouble catching her breath.

 

These symptoms would last between 30mins and an hour.  It was during this time that she would also get the classic porpyhria symptoms including paranoia issues.  This led me to believe that the 2 major issues above could also be porphyriai related.

 

Progress update (1.5.09)

ADD ON: 01/05/09 - Last night I finally added on the second daily 100 mg. of Minoi. Yay!

Doctors in uk

Hi,

I was wondering if anyone in England knew of any Doctors who would help me start the Wheldon Protocol? I have tested positive for cpni and I am really keep to try this treatment.

Any advice would be great,

Chrissie

Doctors in uk

Hi,

I was wondering if anyone in England knew of any Doctors who would help me start the Wheldon Protocol? I have tested positive for cpni and I am really keep to try this treatment.

Any advice would be great,

Chrissie

Starting Cholestyramine

Paula has given the Chole a go.  As of Wednesday she was on about a quarter of a sachet.  At 4pm she would have a slice of rice bread with olive oil spread on it just before the Chole, to help the bile production, but most importantly to alleviate any reaction from the sugar in the sachet.
We have temporarily halted the Chole for a few days, as Paula would get the following symptoms for an hour or two after taking it:-
Cold feeling in her stomach throat and tongue, as if she had an overdose of peppermint oil.  She would get sore gums and teeth which was a bit like the sensation you get when eating an acidy sweet.
As she is so sensitive, the above symp

one year on ...

One year on … just finished pulse 11.  I am often very busy looking after my 6 year old boy  … so don’t often get a chance to write something fuller, in a relaxed way!!!  However, at the year mark, I feel I should add something further at this point to my blog. 

 

Second Month on Mino about done.

First of all ... I do not know why I ever complained about not sweating! I had daily & nightly fevers in Sept. Sweating was the way of my existence and drinking water was all I could think about as my thirst was so great. This past month the fevers are letting up. I only sweat a few hours a day usually after dinner or during the night. Occaisonally now I skip a day or maybe two or three at the most. Just when I think the fevers and sweats are going I get hit again. So this has caused me to stay home indoors a lot the past couple months cause my nap time is definitely therapeutic. By afternoon I am drained. However, I jump at the chance and have managed to drive two or three days during the good hours of my better days. Otherwise I think I would go stir crazy.

ME/CFS improvement on CAP

this is an odd question that has been floating around in my semi-conscious for some time ....

i have been on CAPi for a year - and undoubtedly have improved.  prior to that i had an ME/CFSi relapse for about a year.

obviously i am pleased by this and hope this trajectory continues.

however, my awkward question is 'How much of my improvement is due to CAP and how much by spontaneous body recovery?'.

This is a pertinent question for those familiar with ME/CFS since the illness follows a fluctuating course.  People do improve and get better spontaneously and visa versa.  I definitely bounced back from the illness in my 20s, with no particular treatment, though i was never really 100% in my 30s, and this more serious relapse appeared when i was 44.

Something Viral or different NAC?

For the past week I have been struggling with what appears to feel like a chest cold (or those  CPNi elementary bodies are reactivated?)  This is such a strange feeling, in that, even though I have been "sick" with all the repercussions of the protocol, I haven't had anything like a cold, flu, or viral type illness since being on CAPi.  I have been running a low grade fever, coughing and feeling very flu-like.  Considering I don't get out of the house much, if it is viral my husband probably brought it home.

No Fun being in OZ

My mobility is becoming worse and I am also having neuropathy-type foot drag -- occasionally the  toes on my right foot fold over and I don't feel them right away until I've scraped them on the floor or stairs! And my feet, (even though I  think they are "up") aren't and I trip... I am unsteady.  My husband is constantly having to steady me and help me maneuver on the occasions we leave the house or he pushes me in a transport chair.

These are NEW symptoms which have developed over the last two pulses.   I have had problems with my right knee since the beginning of capi but these symptoms are different. My left knee and leg are now affected.

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