myalgic encephalomyelitis

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British term for Chronic Fatigue (CFS/CFIDS)

Number this Pulse? CFS/ME, Cpn & CAP: a complex thang!

We’ve had a big influx of members with CFSi/ME in the past year, especially with my article appearing in a web CFS newsletter. Getting on the CAPi is confusing enough, and difficult enough for this group, so I have been reluctant to report my own particular experiments and treatment results so as not to add more confusion. My story on the Patient Stories pages is accurate and honest: I report a 60-68% improvement using the CAP for Cpni, and that some particular symptoms have not improved as much as I would like. But it begs the question about what can someone with CFS/ME expect from Cpn CAP treatment?

National CFIDS Association (USA)

Please go down to the bottom as below is a response to my email to add our site as a link for patients to review.  I have been trying & right about now, after having read MANY of the obituaries (on www.ncf-net.org<) of people who have died from ME due to its complications & some by their own hand; I could care less if I offended her or anyone for that matter. 
The Troll Queen
Response:
Really, while there are other viruses & bacteria that may be involved, The Stratton Wheldon protocol actually addresses many of them.  Besides that, we have doctors who are supposed to help heal the whole body.

What Is A Chronic Illness, Anyway?

             What Is A Chronic Illness, Anyway?

A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their  illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.

Antibiotic Protocol - Rheumatologist Annual Meeting

The Road Back Foundation is exhibiting again at the American College of Rheumatology's annual meeting in November in Boston. After the meeting, on Sunday, November 11th from 9:00 am to 2:00 pm, a number of Road Back volunteers will be gathering to brain storm about the work of the Foundation. If you are interested in participating (i.e., have some skill and time to contribute to the Foundation), there are two spots open. If interested, please send a brief bio and your experience with AP treatment/the Foundation to info@roadback.org<

www.roadback.org<

top this for duh factor....

The other day, I received a letter from our Tax Assessment Department.  They have requested my receipts for medical & charitable giving for the past year.  So, no big deal...I go to where I put it & my Tax Return was not there.  I have nicely filed my husbands away, but mine???

Well, I have turned everything upside down & bass ackwards & I cannot find my return, much less the receipts which would have been attached to it!

I have no idea where it could have gotten too, it has seriously vanished.  Talk about brain fog, my word.  I still need to call the accountant but I am sure he doesn't have it anyway.  I recall taking the folder from his house along with my spouses.  I could have sent it out to recycle by error??? 

eyesight

Several times in the past, yesterday, and today, what looks like a transparent crystalline worm has appeared in my vision. I can't tell which eye it is. Does anyone know what this is? I have had floaters for decades, and this is something different. FMSi minocylcine, azithromycin, metronidazolei

Best labs in years, 18-month update

As a part of my annual physical, my blood work came back the best it has in years. My fasting glucose was in the normal range for the first time since '00 or so, and my cholesteroli was low enough that the doctor said that even if I were high-risk, he'd be happy with that number. So, this is very, very good news -- I'd hate to give up using glucose to stop porphyriai. No significant weight loss, sadly, although my doctor cited that as the reason for my improved labs (this with a puzzled look, since he could see that the loss was only 5-10 pounds.) Overall improvement remains slow, but mostly positive. We are 3/4 of the way through moving houses, which muddies the water a lot. Stress and exertion galore!

Nirvana.....are we there yet?

Midsummer's Day saw the end of my twelfth pulse and a new beginning.  Last week I found the diary I started with my first antibioticsi and realised two things, it has taken more than two years of treatment to get to this point and I am on the path to Forgettory.  Dr Wheldon's Forgettory must be Cpni Nirvana, that state of being beyond the bad times and free of the memories so  before I let it all go this is a little account of several false starts and how I came to be diagnosed with a bewildering array of syndromes and disorders.

It is official.....update

 

Vitaminsi are ramping up, Niacin">i 375 mg, NACi for 3 wks now 2gms, D 1600U, along with all the rest of the Wheldon recommended supplementsi & what I normally take.

Need Input Please RE Experiences on filing for Disability SS

I'm not sure if this topic is appropriate or if I have posted it in the right place; but, if anyone would be willing to PM me or respond I would greatly appreciate any input.

ruthless1, Canada

Multiple Symptoms, here is my diatribe!!  I was new to the site April 06 & I have Fibromyalgia-FMSi, Chronic Fatigue Immunei Deficiency-CFIDSi/Myalgic Encephalomyelitis">i- ME, Chronic Lyme Diseasewith the usual cornucopia of underlying symptoms, crashes, flu like symptoms, migraines including CPNi, Babesia & recently hereditary genetic Hemochromatosis. 

Pulse #4 - I made it!

Hi Everyone!

I've made it past 3 days on pulse #4!  It's all very exciting!  I haven't gone crazy nor have I freaked out.  I am going to go for day 4 and day 5.

I am however only taking about 300mg. of Flagyli per day.  A little over half of a 500 mg. tablet.

Last night, my neck, throat, ear and groin throbbed.  All of the areas where I have enlarged lymph nodes. I am a teeny bit twitchy but I'm working through it.  I also had some aches again in my right lung and ribcage.  I'm having a little bit of a hard time falling asleep, and I sleep a little crazy (move a lot).  I still have a ton of mucus coming from my lungs, sinuses and even my eustachian tubes.

This morning I awoke at 7 a.m. (after going to bed at about midnight), I had enough energy to clean the kitchen (my own kitchen test - haha), wake my children up and make chocolate chip pancakes for them before we started our schoolwork.  My husband didn't wake up until about 10 a.m. and he was just thrilled to see that I'd been up and happy. (he hasn't started his pulses yet, he's still dealing with the Zithi and T3 and he works the late shift because he can't get up in the a.m.).

Antibodies Finally

Well today was my doctor's appointment.  I saw Michael at Dr. Powell's office.

Now, apparently, I have thyroid antibodies all over the place.  Michael is pretty sure I have Hashimotos with an elevated TPO at 412 (normal is <30).  However, I also had very slightly elevated Graves antibodies.  I have a thyroid ultrasound tomorrow (because it is still quite large and painful) and I have a referral to see an endocrinologist.  While I thought I had the perfect dose of propranolol, Michael wrote me a new prescription nearly doubling my dosage.  He said he wants my heartrate under 100 at all times and preferably around 80 bpm.

Because I'm having quite a bit of endotoxic reactions (I shivered and fevered all week), we lowered my daily Valtrex to 500mg instead of 1000 mg.  I'm to keep up everything else and apparently I've been managing my pulses quite well.  I'm just about ready to start another one.  I'm also going to begin taking Ursodial for my liver.

Doctor's Appt. Anxiety

I have a doctor's appointment tomorrow morning and I am scared to go.  I am posting this because I am trying to deal with my pre-doc appt. anxiety.  Maybe in a year I won't feel this way.  It's awful and it makes me procrastinate.

So why exactly am I afraid?  Well, my thyroid is still swollen, it hurts and itches, I'm still on the propranolol and have a high heartrate.  Maybe they'll want to take my thyroid out?  Maybe my latest antibody tests came back positive for something like Graves disease and they'll want to radiate my thyroid.

I always have this fear of doc's not listening to me too because of all the terrible experiences I've had of being in so much pain and referred to a psychiatrist for it.  That was probably the lowest point in my life. I know Dr. Powell's office is different, but all those feelings and experiences still hang around.

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