I am curious too.
Do you have a link to somewhere you have listed your symptoms, taniaaust? I know you have explained them before, but my memory is falling to bits these days. I am also not aware of what Dr Bell and Dr Cheney's type of patients are like. In fact I did not realize these docs had a certain patient type. If you know of a summary of their patients' symptoms, I'd love to see it.
Ive been looking for my full symptom list of 92 symptoms which should be at this site somewhere.. havent been able to find it. I probably had them listed in my introduction post at this site.. (cant search here thou from what I can see for ones oldest posts???). I'll post the link when I managed to find it
Both Bell and Cheney were doctors who handled the ones from two major different outbreaks so one can say they got a lot of their info from treating a certain ME patient cluster (thou of cause also see and have seen others). By refering to their patients.. I was refering to patients from those clusters which they treated.
I dont know where there is a good summary of their patients individual symptoms but from talking to their patients over the years.. there was some more uncommon symptoms I had which I hadnt heard mentioned before, which I found were in some of their patients.. and for the first time I was finding others who had the more unusual symptoms which one dont often hear about eg Dr David bell.. was finding orthostatic hypertension in some of his patients..something I havent heard any other ME/CFS specialist speak about.. A patient of Cheneys from Lake Tahoe, told me that Cheney found many of his original Lake Tahoe patients have issues with sugar. That patient of Cheneys was on exactly the same kind of diet as far as low carb to a crazy amount that Ive found I need to be on. (I still have a copy of mine and that patients discussion on what Cheney was finding).
There is also info online on the progression of the disease .. how Cheney says it goes.. it does describe the pattern my illness has followed in a way.
http://www.dfwcfids.org/medical/cheney/heart04.part1b.htm I had muscle issues and FM.. before the disease ME went to my gut. My food intollerances came in many years into the illness. (thou I got liver issue in first year of the illness and my brain.. was going in the first year of this illness). But my Big brain issues didnt happen till later in the illness... My brain did follow the pattern he says in the way it gets worst in his disease progression.
In the brain, there's a devastating effect with respect to liver/gut dysfunction—it can quickly toxify the brain. That's perceived initially as, "I only have problems when I have to use my brain." Then it becomes a problem even when you don't use your brain that much
.. and for me the "permanent" brain issue.. not just after exertion.. kicked in after the gut isses etc..
You have all kinds of cognitive complaints like memory disturbance and processing speed. Then you begin to get central brain structures that can destabilize you psychiatrically. You can get hypothalamic structures that begin to destabilize you from an autonomic nervous system perspective and/or neuroendocrine response defects. [neuroendocrine: the interaction between the nervous system and the hormones of the endocrine glands]
The brain and the heart probably get hit about the same time, but patients usually notice their brain being affected much earlier than their heart. That's because heart muscle cells have the greatest mitochondrial content of any tissue in the body. Thus, when mitochondria are impaired, the heart muscle has the greatest reserve and is the least vulnerable
and that is exactly what happened to me and the order it went in.. Last was the heart issues which I started to get..
The effect on the heart has an "a" part and a "b" part. "The initial manifestation of microcirculatory impairment of the heart is arrhythmia. What kind? You name it, you've got it."
That is exactly what did happen to me next... I also at that point developed one of the flappy valve things Ive heard he speak about (I didnt have it before that).
The symptoms my virus produced in me (and to a lesser extent, in 30 other people that caught it) I listed on my website
here.
Thanks I'll check that out. My illness started out with very virally symptoms .. for the first year every time I crashed.. doctors kept on telling me "you must have a virus".. swollen glands, high temps, muscle aches. lethargy, extremely sore throat etc .. after that stage.. I crashed bad and then had hypersomina and extreme weakness added to that mix (neurological stuff came much later). My throat looked like your pics.. maybe redder..with all white discharge.
edit.. Im looking at your symptoms now.. not a the begginning but much later.. I suddenly developed gum disease.. and at another stage my gums suddenly (Iike overnight) went all soft and squishy..and my teeth were wobbling in them.. it scared me.. I thought I was about to loose all my teeth.... just as weirdly..after a few weeks or a month.. my gums went back to being hard.
I have no wrinkling of my skin.. "
Subtle Loss of Hearing Acuity in identifying sounds." I did develop that for a while... and was diagnosed as having "central auditory processing disorder" due to it. ..the hearing issues arent due to the ears but the brain.
My mental health wasnt majorly affected till I devleoped insulin issues.. to carbs, much later in the illness.. Before that thou I developed severe premenstral dysphoric disorder.
pins and needles or skin crawling sensation began to appear, first in my legs, but quickly spreading to all my body. There were constant sharp prickling sensations everywhere, which felt like they were located just beneath my skin.
ahhh I had that very badly.. for over a year or more.. I got it about 7 years? into the illness thou.. it seems you got a lot of the symptoms far faster then I did. It was like having ants crawling all over me and being bitten by them.
Next, I noticed my vision began to deteriorate. So I had my eyes tested; there was nothing wrong with my eyes or my ophthalmic prescription
Mine too.. the eye specialist said i needed glasses when he tested me.. a year later I went back to get them and retested only to find my sight had come good (I really think it was all the vitamins I took!! He said he never spontanously had a persons eyes come good before). My eyes sight thou have gone again some 6 years later..
wow electic shocks.. my hair almost set fire from a HUGE spark which jumped from my finger and got caught in my hair the spark jumped almost an arm length.. it was then actually burning hot in my hair (almost burnt my head), i ended up banging my head with hand to put it out. I never related that incident to do with any ME or viral thing before. Now that Im thinking about it, I think I remember a CFS study in which they found our skin conducts elecrticity differently to normal.
Thou we both do have so many of the same symptoms and could have the same thing.. yours sounds more like the chinese thing with your skin..
