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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
     
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  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
     
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  7. pemone

    pemone Senior Member

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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.
     
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  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.
     
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  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.
     
  12. annie0663

    annie0663

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    Hi Leo, I don't have a minute to even stop to comment on posts but yours stunned me as I know everyone on here has common symptoms but yours hit home. The wasting away, (mines more rapid aging, tissue loss, sagging and dry skin than weight loss) the mycoplasma the cracking noises in back of neck, neck pain etc.
    I have had the Lyme test, supposedly the good kind, but unfortunately I have no brain anymore with this illness so I can't remember which one it was. :/ it was negative though. I don't think you have Lyme but if your concerned by all means check it out. What I'm saying is having cfs and all its attached virals is enough to give us all these symptoms. I've been sick since 2000. I started with migraines, then my ears started to have pressure and they pop every time I swallow. Then got neck pain on both sides then cracking neck came. Followed by body aching from neck to feet, became cold natured, started getting little round spots on my legs that would turn red in the sun which has now covered my arms and stomach. Always thought it was fungal but still don't really know. No fungal treatment helps it. My eyes started to feel like there were particles in them floating around. I also felt like I could feel things crawling in my bloodstream on the backs of my legs! My muscles started twitching for a while but that's not so much. I would turn foggy headed after eating and couldn't tolerate anything acidic or alcohol.
    I have no energy, I have night sweats, muscle weakness, rapid heart rate occasionally but no more migraines since I went on a detox.
    I've been diagnosed with cfs, fibromyalgia, Epstein Barr, mycoplasma, arthritis etc. the worse thing right now is this burning in my back while I'm sleeping. It would wake me up from a deep sleep and I'd have to throw the covers off or I'd burst into flames. This would happen like 3/4 times a night.
    since the rapid wasting away and the burning the last few months I've been trying to delve into my disease more and I did stumble on something the other night reading about the 13 holistic doctors that have died, 5 just in Fl. They were all murdered because they were on the cutting edge of exposing the cure for cancer and wonderful results for autism this year, 2016. The last doctor was shut down 3 days before he died this past June.They also shut down the center that made this discovery because it wasn't FDA approved. The good news was that it cures CFS and many other auto immune diseases. The bad news they shut it down.
    I am now on a mission to find a way to get it. They used to have clinics where you could go to (they still might) in Germany, Switzerland, etc but they would also send it to you. There are ones out there on the Internet but some might not be up to par like the Japan one. The doctor's company is immunobiotech.eu. I won't name his name just to be safe but you can look it up. If you listen to his videos he will explain it. I wanted the pill form like the Japan co. has but they said oral is not good. It must be injected or intravenously, that's also what I'm looking into. I hope this info helps you or anyone who reads this. :)
     
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  13. *GG*

    *GG* Senior Member

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    Just breaking this up to make it easier to read, can delete it, if you fix it yourself. Interested in this because I am having issue with right knee. Drs office said muscle has atrophied, that is why my knee is popping out to side.

    Not sure why this would happen since I am actually probably as physically active, if not more, than the average American!

    GG
     
  14. pemone

    pemone Senior Member

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    How could you allow yourself to fall for such obvious snake oil? Everything about this company and its products shouts warning flags:

    * There is no clear description of the active ingredient.

    * There is not a single double blind study - or even a biased unscientific experiment - to prove efficacy of this ingredient for any disease.

    * When the regulator in UK shut down their production, they noted that the ingredients were not biological grade and the manufacturing conditions were unsafe, creating possibility of human risks if you inject it:
    http://www.meassociation.org.uk/201...idgeshire-mhra-press-release-3-february-2015/

    What makes you think you have a disease that would benefit from a stronger immune system? A common cause for CFS is something like biotoxin illness, which is the failure of the body to produce an immune response to certain biotoxins. Without antibodies, the body release primitive immune system chemicals like cytokines that block oxygen delivery to small capillaries, denying you of energy.

    The last thing you would want to do for such a person is improve their immune system. Improving their immune system is going to increase their cytokine release and they will be even sicker. The way you cure that particular condition is first by getting rid of the environmental exposure. Then you try to drain as much toxin out of them as you can. Then you try to restart their hormone and regulatory systems. None of those things involve improving the immune system.

    Any company that tries to tell us that the cure to every disease is a magic injectible substance that improves the immune system is practicing the worst kind of quackery.
     
  15. Justin30

    Justin30 Senior Member

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    I appreciate your own views on this matter. But please take into that as per the original definition of ME this is a Neuro Immune disease.

    Muscle wasting is a large component to the disease. As IGF 1 levels and binding protein malfunction. Which also inhibits the production of hormones throughout the body. This is likely an immune mediated resposnse that hits your CNS and accompanying nervous systems. An is what the foundation of ME/CFS Research is based on.

    Toxins ie bacterias, viruses, parasites and free radicals from energy in the production need to be cleaned up by something ie the immune system, macrophages, liver, kidneys, etc. If its not working then what cleans them up?

    When you have a multi system disease all systems are functioning incorrectly. Due to mutations in many areas of the body for example receptors that accept neurotransmitters that control the normal process of the autonomic nervous system POTS/Dysautonomia.

    Ian Lipkin and Mady Hornig (worlds greatest virus hunter colleague of top ME/CFS expert Dr Daniel Peterson) determined that the immune system of ME/CFS parients is copletely exhausted after 3 years on average. I could guarantee this will happen sooner for some and later for others. That has been proven by research are immune systems are underactive.

    The ingredient is a protein in he human body that is naturally produced but then becomes depressed under chronic illness and/or elevated. It has been study in Japan, italy, US and other countries in Europe. They were small studies. Not all published and had small patient cohorts.

    The UK is the largest propent of PACE ie. That study that said CBT and GET is the best treatment for people to recover that is under massive scrutiny from over 11,000 ME patients in the UK alone, has signatures from over 80% of top ME/CFS Drs in the World, and has had requests from University Proffessors in the US to release the PACE data; which the the UK study authors are gripping onto so tightly because the P2P and IOM reports prove the biological nature of the illness.

    Further the UK in all interestests would want to stop a drug like this from being manufactured. The facility that was raided was a storage facility for sealed coponents of the manufactured product as per what the CEO stated and all claims were reported about the sanity of the facility were made by police not an inspection agency. Also they found no product manufacturing equipment where the products were confiscated and the company was shut down. Now I know this is a he said she said but based on whats going on in the UK dont you think this is quite timely shut down?

    Moving further to the US i read about the conspiracy about the Drs and it does seem strange and yes a lot of Drs are out their to just make a dollar. My question to you now is if you found something, a drug, that could shrink cancer tumors, boost and/or suppress an immune response and would virtually hault or erridicate a disease process wouldnt you want to know if you were elligeable to try it ie. Fit the bill that this drug could help you, especially if you had very low QOL.

    Now here is the real question if you were Big Pharma in the US and you thousands band aid treatments that result in you having to use more drugs over the coarse of your life why would you want a cure to a disease? Big pharma pays for Senators campaigns, influences Bills being past, influences FDA drug release regardless of side effects. The bottom line is a cure more natural/ than synthetic in nature disrupts their bottom line....Loss in Revnue/Money. This drug was developed in Philedolphia if im not mistaken an now is not allowed into the US I think, but pretty sure. Don't you think its just kinda weird?

    The NIH believes that a new immune modulators will be the end result to the NIH/CDC Study. Every practicing ME/CFS physician uses and immune modulator as part of an overall protocol whether it be LDN, Immunivir, IVIG, Valcyte, Ampligen, or others.

    This immune modulator is just a possibility for a few and Drs that use it, combine it with other medications or supplements.

    The claim was that it did shrink tumors, has helped in ME/CFS and Autism and many other autoimmune disease.

    Just to reiterate it is not intended for use in all ME/CFS patients and has only been shown to work in ones that test high in a certain enzyme and sometimes it doesnt work. Some people have done extremely well on it though even people on PR have talked about it.

    Dont think its a cure just anothet tool to be added to the tool kit for ME/CFS.

    I am not a Dr and but have read quite a bit...research and you will find which Dr use this drug.
     

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