Chronic Fatigue Syndrome

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

Very interesting! I'm not depressed, I'm actually really sick. Really.

I've just finished a seven-day course of Flagyli, and - after warnings from both the doctor and pharmacist to stay away from alcohol - Googled "Flagyl" and "alcohol" and came across this site. Didn't know ether was a virtual support group for chlamydia pneumoniae |(how do you explain that to the uninitiated? I've been asked "sexually transmitted, eh"?)

So this is rather exciting and quite interesting as well. My story is quite a bit like so many I've heard or read about.

Leaving CAP ....

After 15 months, I have decided to leave CAPi after this current and last pulse (pulse no. 15). 

Though there were some improvements, in the end the problems that still remained made me feel that CAP wasn't working out as I had hoped.  Added to that, the effects of each pulse on my body made life very difficult for days and days on end, and as I have a little boy to look after, I decided I couldn't do it any more, that I could not carry on feeling like that indefinitely with no sign of respite.

Starting LDN - Topic Revisited

Starting LDNi tonight(Low Dose Naltrexone) topic Revisited - the continuation of a thread relocated from a personal blog page to a forum topic. It was started about 5 months ago and previous posts are included below;

Immunglobulines - anyone tried them?

Immunglobulines - anyone tried them while on capi?

I am not sure what causes my horrible symptoms (neck+back pain, feeling dizzy, flush symptoms, itchy pustules, feeling dizzy like under drugs, cold hands, sore throat, shivering, fluish feeling....)

 

Is it due to die off or is from viral flare up - entrerovirus cox a9, ebvi or are this viral flare ups due to my strong cap regime Rifa 600, azi.500 p.d.?

Or is just the regular die off ?

I don t know. Did anyone tried Immunglobulines (especially for virus coinfections?)? In germany whe have for example 5 ml Vivaglobin which has:

 

IgG1 ca. 61%.

IgG2 ca. 28%.

IgG3 ca. 5%.

IgG4 ca. 6%.

Mark and Paula

Has anyone heard how they are doing... haven't seen a post in a while and they have been in my thoughts.

 

Still Fighting to Take 3rd Abx. Stopping Biaxin for 1 month.

Well, it's been so long since I've posted, I'll be surprised if anyone even remembers me.  I've been fighting to get to take Flagyli (or similar) and my doc wanted me to take pyruvate and then take rifampin off and on (but not take flagyl).  I wasn't up for the rifampin off and on; still terribly confused by his desire to avoid flagyl and pulse rifampin, but went ahead and took the pyruvate. 

I  vomited like I had food poisoning and had some other strong reaction on day 9 (or got the stomach flu?) and stopped taking pyruvate temporarily.  I got a similar reaction about a week later even though I hadn't started taking pyruvate again.  My gut instinct is that it was a delayed reaction, but I have no real idea.  I felt really sick and weird for a few days. 

I have been diagnosed with a chronic bacterial infection

Hi,

So I'm new here, just wanted to post this and see what you all think.

I was diagnosed with M.E/CFSi around 3 years ago, so I was just 17. Now 20 years old I had my blood sent off to Dr. AW. He confirmed an infection of

"Borrelia - like spirochaetal forms". Also;

"Bacterial forms i.e. Chlamydia Pneumoniae-like forms/Micro-cocci forms/small-form bacteria (all treated by the  Chlamydia Pneumoniae protocol)".

Bad Days and hours or days when you feel good ? Herx and symptoms question

I have some Herx and symptoms questions. I would be glad to hear your experiences.

 

What I experienced is that my symptoms get worse while under abxi.  But the symptom catalogue is  nearly the same , the difference is that the symptoms are much stronger while under abxi. (for example :Muscle pain, cold hands, fluish feeling, etc.)

But I still have some days or hours when I feel better. I have these reactions cyclical . Can anybody report the same ?

Why do we feel better on some days and a couple of days later everything is as worse as before?

How have other members experienced the way of getting better? Less days when they feel bad?

Hazards of a Faux-CAP

I don't tend to blog much these days as either changes are slow at this point, or I feel I need to wait until any trends I notice are clear and confirmed over time. Over the last 6 or 7 months I'd been struggling with increasing brain fog and fatigue, very frustrating and very puzzling at this late date. Although I have not gotten as much improvement on these symptoms as I would like, the CAPi has certainly restored me to functionality in this regard, so the decline in these improvements really threw me. And this was occurring despite having very mild reactions on 3 or 4 pulses that even included 300mg a day of INHi!

Down the home stretch on my pins -- KlonoPIN and RifamPIN

It has been an embarrassingly long time since I posted. Things were just progressing so slowly that there was little to report.

Take "air hunger," for example. In 2006, it was a weekly occurrence. Typically on a weekend evening, I'd just gasp for air for a few hours. Very embarrassing, so I'd go off by myself. By mid-2007, I'd found that getting really warm cut the episode short, and by then the episodes had dropped off to maybe one or two per month.

A question for the "virus" experts on CMV

Over several years my IgGi for CMV has come back as   >250  (positive is >15 )

My ID doctor always said it was 'evidence of previous infection'...... but if that was so, shouldn't the level fall with time. The IgM has always been negative.

Is this level high? Is a persistantly high level of IgG indicative of chronic re-activation? If this is adding to the Lyme and Cpni, maybe I should do Valcyte?

I am going to get the levels done again today.

Anne

Switched from Mino - My Doxy Diary

 My Doxyi Diary: 1.17-2.20.09 (I had been on minocycline since Sept. It had caused extremely painful wrists, fingers, shoulders and knees. I needed to see if Doxy would be more tolerable. It appears so far that it is the case for me. I also take Azith M-W-F. Last entry at top going downward to first entry.)

Backsliding...

I am in a quandry.  I am concerned I may be developing a resistance to doxyi and/or azith, is that possible? Or could it just be time for me to mix it up?

 I am again very ill with severe bronchitis and/or cpni pneumoniae symptoms.  I am almost physically at the point I was in March of 2007 when I was first diagnosed (bed ridden, chest pain, deep bronchial coughing, very weak)  This is about the 3rd episode over the last 6 months (2nd within the past 2 months!)

In all honesty my improvements over the past year haven't been significant, other than a reduction in brain fog and a reduction in my FM symptoms.  As each month passes I keep adding to the mix..... I KNOW that is part of this process -- it just becomes more obvious how infected I must be.

Getting started

Hi there, thank you all on this site for your help, here's my story

Since summer I faces raising fatigue, finaly I had to take vacation, I couldn't stay awake for couple of hours. Slight pain in joints start to raise right after. Luckily I've found some information and friends who led me to start studying CPNi and Lyme disease. Soon both ewre found in my blood. It took about a month to learn that official medicine won't help me, nor they even admit the infection. And it took another month to get the pills, for Wheldon protocol is not standard cure in Czech republic, and it's not legal to buy antibioticsi which are not prescribed by your doctor.

I needed to combine something for CPN and Lyme, so with some help from more skilled friends, we set up following:

Cpn and Mycoplasma strains found in the general population based on latest Morgellons research.

I have been studying Morgellons Disease for quite a while (although luckily not a sufferer) and am very intrigued by this man's research. Based on his research he is finding Cpni and Mycoplasma strains in Morgellons patients and general members of the population who display no skin manifestations of the Disease.
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