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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Fairly rapid tissue and muscle wasting during disease onset

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by leokitten, Oct 24, 2013.

  1. leokitten

    leokitten Senior Member

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    I'm really worried now because I just want to rule out Lyme if I don't have it. Since I am treating my Mycoplasma with doxycycline I imagine this will also get rid of Lyme either way.

    One of my symptoms has been a throbbing pain on the left side of my neck and neck cracking noises when I tilt it back and forth many people said this is a symptom of Lyme or could it also be from another infectious agent?
    Last edited: Oct 28, 2013
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A continuous course of doxycycline probably isn't enough to get rid of Lyme. Antibiotics are usually given in combos and rotated every 2 to 3 months for at least a year (unless it is a new infection) because Borrelia is such a stealth infection with several different growth stages.

    But the doxy should act as challenge test and it might be worth retesting for Borrelia after a few months.

    Sushi
    Valentijn, Sea, merylg and 1 other person like this.
  3. leokitten

    leokitten Senior Member

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    Are there any symptoms that would help one do a differential diagnosis between Lyme and CFIDS? I've searched the internet and it's difficult to find that answer.
    Last edited: Oct 28, 2013
  4. Ruthie24

    Ruthie24 Senior Member

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    I have these same symptoms (except right side) but have also tested negative for Lyme. Seems like my lower cervical vertebrae are degenerating at an alarming rate however and they are sounding like the neck of my 80 y/o patients. This is the first I've ever heard of this being related to Lyme however. Do you remember where you heard this?
  5. leokitten

    leokitten Senior Member

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    Type into Google "neck crack lyme" and you will find this symptom along with neck pain. I know Google results aren't a clinical reference of any sort :), but when you continue to search and find official Lyme symptom references it shows the neck cracking and pain symptoms.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know of any that really indicate specifically one or the other--except the initial bulls-eye rash which only happens sometimes anyway. Makes it a hard call unless they find it by PCR or can culture it.

    Sushi
    aimossy likes this.
  7. pone

    pone

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    I don't have enough experience or research time with this disease to be dangerous yet, but I want to make a very radical proposal. My hypothesis is that CFS is being caused by rapid sustained weight loss. Now it might also be true that once you become ill with CFS you stop activity and then the slide in weight becomes even worse. But it's an important element of your story (and also mine) that you became sick, LOST WEIGHT, and THEN developed CFS.

    In my case, the match that lit the CFS fire was I went on a low carb diet in Nov / Dec 2013. I didn't understand the diet well enough and I failed to take salt (as research literature says you should) in order to hold onto water weight. I rapidly lost weight I could not afford to lose (I went from 170 to 159), and somewhere in this process I started to develop the brain fog and loss of power after aerobic exercise. I failed to understand what was happening to me for months.

    In any case, what you perceive as loss of muscle tissue is probably actually a loss of water weight, and very importantly probably also a loss of blood volume. A key element of this disease seems to be that our fluid volumes permanently contract, and that sets off some chain of events that puts the body in some different equilibrium for aerobic energy use.

    At some point I tried to reverse it all by eating more food, and getting more carbs, but that failed to halt the slide. Finally, I realized my failure with electrolytes and started to supplement about three grams of sodium a day. That made me feel better, but not good. And I still had the horrible post exercise malaise and loss of muscular energy.

    Now I am experimenting with a more balanced electrolyte, trying to get my potassium in at least a four to one balance with sodium, and trying to increase bicarbonates in the mixture in order to get more alkaline. I have discovered that this electrolyte can clear the burning sensation from the muscle much more quickly than it happens on its own. But it is not a cure. I'm not lifting the brain fog. I still cannot do aerobic exercise without paying a heavy malaise and muscular energy penalty that night and next day(s).

    At some very superficial level, my concept of what has happened to all of us is that we have lost our cellular batteries. It's like we had a car whose battery worked fined. Some event caused loss of fluid volume in the battery. And then suddenly the battery refuses to turn on. And when you try to replenish the battery fluids, the battery still doesn't want to work. We are still able to do anaerobic exercise for eight seconds, but once the duration goes beyond eight seconds and we start to use aerobic energy systems, our cells fail to work correctly.
  8. leokitten

    leokitten Senior Member

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    I do agree that the loss of blood volume and other cardiovascular changes caused this tissue wasting.

    On your theory as to why the disease started I would generalize more and say that it was the physiological/biological stress you put on your body after drastically changing your diet that was the final blow or tipping point and started your ME/CFS, and this included the rapid weight loss. It could also be that you could have initiated the disease with another stressor, your body was already near the tipping point and it just happened to be your diet change that broke it.

    Please read my thread here
    Is ME/CFS caused by biological stress and perpetuated by high catecholamines and low blood volume?

    It summarizes my beliefs on the cause of this disease (for many people, maybe not all) and how it's perpetuated and causes damage at least early in the disease process. Based on what my significant knowledge of ME/CFS and experience having it it makes the most sense to me over any other theory, that the disease is caused by biological/physiological stressors and for each person the types, amounts of, and periods that they can withstand are all different until they hit a tipping point and fall into the disease. The chronic stress response precedes the disease subclinically somewhat unknown to us for a very long time until the final stressor that sets the disease in motion.

    This biological stress response with high catecholamines and periods of very high cortisol, which can be cause or be caused by hypovolemia (it's plausible that either one could cause the other) then goes even further off the charts after you fall ill and causes significant damage. The body is only built to withstand short periods of stress response.

    Do you have mild to moderate hypertension after getting the disease, or at least spurts of hypertension? I had normal blood pressure before and immediately after gettting sick my body had chronic mild hypertension and because of the major neurological problems the disease caused and trying to rule everything else out it took me a long while before I realized my sympathetic nervous system was malfunctioning.

    I wish I didn't keep pushing myself in those first many months trying to live my life like nothing was wrong, it made the stress response worse and caused the cycles of hyperactivity and subsequent crash. In my case I had no choice, I have a full-time job and could not stop working.

    I also wish I did at least these specific labs right after I got sick, if you can have your doctors do the following labs:

    24-hr urine catecholamines and VMA, fractionated
    24-hr urine metanephrines, fractionated
    24-hr urine cortisol
    24-hr urine aldosterone
    24-hr urine osmolality
    Antidiuretic hormone (ADH) profile
    Renin activity
    Angiotensin II

    And try to do the 24-hr urines on a day where you are pushing yourself, I'm fairly certain than anyone early in this disease will show a dysfunctional sympathetic nervous system and stress response.
    Last edited: May 30, 2014
  9. maryb

    maryb iherb code TAK122

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    This is similar to what happened to me including losing over a stone and a half in weight. I didn't eat or drink for 3 days and then it took a month before I could tolerate small meals. (I was able to put the weight back on and now have a problem controlling it) I had a viral test at the time which showed mega high active CMV infection, the rheumatologist I saw put severe muscle atrophy on my file. A couple of years later the same thing happened and the viral testing then showed active EBV. I was lucky in that each time I recovered enough to be able to travel in the back of the car, sick though I was, I was determined to have the testing, which always pointed to a viral infection.

    I am 8yrs down the line just having Lyme testing, the docs diagnosis so far is a high probability I do have that.

    Sorry I can't read through all of this thread, if its gone down another route I apologise.
    rosie26 likes this.
  10. bart32

    bart32

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    I experienced generalized fat loss very recently. About 9 years ago I was diagnosed with CFS. After a few years it got better, although I never fully recovered. February-March this year everything got worse. A few weeks after a streptococcus infection which was treated with antibiotics for 10 days, I suddenly got joint pains and cracking and severe subcutaneous fat loss throughout my entire body, from face to feet soles. The doctor only found elevated ASO titers at 800, some vitamin D deficiency but not too bad, slightly elevated uric acid and rather high glucose level (this might be connected to the fat loss, I never got that problem before). No sign of any auto immune diseases, lyme infection,.... The only thing we can think of now is Lawrence-Seip syndrome, a rare condition of acquired generalized lipodystrophy.
  11. stevesayshi

    stevesayshi

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    @pone very interesting idea. However I tend to agree with @leokitten that it's more the stress of the weight loss that leads to a vulnerability and then the disease can get ya. I lost 25 pounds very quickly by cutting grains and beer from my diet, then I had the "peeing my blood out" thing, then some joint popping and pain, and then some coworkers and I caught a stomach bug from which they quickly recovered while I wasted away another 20 pounds and lost 80% of my strength and endurance and probably 50% of my executive mental function not to mention the very rapid aging of skin, hair, connective tissue (neck arthritis visible on MRI at age 33 after being 6 months sick), etc etc etc funtimes.

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