Wednesday, June 2, 2010

Help Save My Life- I need your help

I'm a 39 year old male, and for 18 years I've been suffering from some kind illness that causes crippling fatigue, pain and memory problems. I've been to dozens of doctors, had hundreds of tests and spent thousands of dollars. It's only getting worse. I'm suffering all the time. I can barely work, and am seriously in danger of losing my job. It's only through insane amounts of effort that I manage to get anything done at all, and even that is no longer working for me.

I'm so tired that I can't enjoy anything. I can rarely even watch television because I get so tired and frustrated that I cannot follow the plot. I've gotten lost driving home from work (a route I've driven hundreds of times) because I was so tired/confused. Every day I wake up exhausted.  Life is an endurance marathon for me.

Can You Help?

I've tried everything I can think of, and lots of things I'd like to forget. But I'm all out of ideas. I really feel like I'm at the end of my rope. Here is the typical pattern I've been iterating over for the past 18 years- lookup a new doctor; schedule an appointment; doctor runs whatever kinds of tests he or she specializes in; tests come back normal; doctor runs out of ideas, and sends me off. I understand that it's not an easy case, and I don't expect a miracle. But I would really love to find an advocate that could help me figure out what that next step would be, which specialist to see, etc.

Please help me figure out what to do. What kind of test should I ask for? Any recommendations at all would be really, really welcome. I live in the Cleveland, Ohio area.

Symptoms
  • severe fatigue
  • non-refreshing sleep
  • memory loss, inability to concentrate or focus
  • muscle pain
  • dizziness
  • confusion
  • numbness
  • loss of dexterity
  • nasal congestion, always having to clear my throat
  • heat intolerance- I absolutely cannot stand the heat- fatigue is magnified by it


The Details

It started when I was about in college, about 20 years old.  I started feeling unusually fatigued. I'd suddenly feel physically weak, have trembling hands, and need to sit down.  I thought it was due to a poor diet- I became a vegetarian in school, but wasn't terribly good about eating a balanced diet. When the fatigue got worse, I decided to start eating meat again. Unfortunately it didn't help.

I started having trouble with numbness in my hands.  I used to play classical guitar, but the numbness worsened, and I could no longer "feel" the strings well enough to play. I would reach for a cup of coffee, and instead of grabbing it, would fling it across the table.  I developed pain in my hands and arms which no amount of rest seemed to cure.  It feels as if someone is pulling my muscles tightly- picture a rubber band being twisted up by rolling a pencil.

The numbness and pain moved to other parts of my body. I started feeling it in my legs, and had trouble walking.  I'd have trouble tripping all the time, feeling like I was dragging my feet.  I developed dizziness. Walking has become more and more difficult, as I have a hard time judging where I am spatially, and movement is disorienting. I developed a constant ringing in my ears, and at times my hearing "turns off" (one ear at a time, thankfully.)

As time went on, other symptoms started piling up. A sudden and unexplained bout of prostatitis (inflammation but no detectable infection). This left me unable to urinate normally- I dribble all the time.  My digestion is a mess (having to go 3-5 times a day, gassy all the time).

I do have a positive diagnosis of Hashimoto's Thyroiditis (where your body attacks the thyroid gland), for which I take Synthroid and Cytomel. According to recent bloodwork my levels are where they should be, so the medication seems to be correct.

I've also learned recently that I have an elevated IgA, which I'm told "is consistent with monoclonal gammopathy, and may explain your peripheral neuropathy".  The doctor (an endocrinologist) did not really explain that very well to me, except to say that there's not much that can be done for it.


Things I've Investigated
  • Sleep Apnea- I've had 5 or 6 tests done over the years. Occasionally they will find a "small to moderate" amount of OSA, but after 6 months with various CPAP/BiPAP machines I never saw any improvement in how I felt in the morning.  I had a very expensive ($7K) dental device made, which proved similarly useless.  I even had a surgery to remove my uvula after one doctor suggested I had "upper airway resistance syndrome".  My gut feeling is that there may be some OSA involvement, but it's not the primary cause of my fatigue. 
  • Lyme Disease- this was my initial suspicion many years ago, but the tests were negative. Tested again in 2008- came back positive, but after a year of treatment with every antibiotic imaginable (oral, but not IV) never yielded any improvement. 
  • Multiple Sclerosis- ruled out by MRIs.
  • Antidepressants- tried every kind imaginable for about 5 years. Several doctors tried these, suggesting that while any depression I might have is not primary, it's a common side effect in anyone with a chronic illness, and treating it might help.  SSRIs would always seemed like a silver bullet in the beginning, since it would drastically improve my mood, make me feel care-free and happy for a few weeks.  But it really didn't help with the underlying symptoms (fatigue, pain, confusion), and after a few weeks I'd feel worse than when I started.
  • Fibromyalgia- tried Amitriptyline, Lyrica, etc.
  • Psychotherapy- tried this for 9 months. After enough doctors tell you "it's all in your head", you'll try anything.  
  • Vitamin D- was tested recently and found to have to have an extremely low level of 8ng/mL (should be 30-74).  Consequently was prescribed 1000 UIs 2x daily.  Saw a dramatic improvement after about a week. Doctor then put me on a 50K UI pill once a week.  Had a negative reaction to that- very tired, headaches, nausea. Went back to taking 1000 IU 2x daily, and headaches etc. went away, but so did the initial improvement.  It really felt like magic when it worked- I felt more awake, less pain, more focused, could think more clearly, but then it all went away.  I kept thinking that the dose was too high, or too low, but was never able to reproduce the improvement I had in the beginning. Maybe it was just a coincidence. I've since had my D re-tested, and it's within normal range (25-OH, Total: 47, D2: 35, D2: 12).  
  • tested for allergies- tried this in the very beginning, and the even the doc was surprised when all the results came back negative (because upon physical exam, he observed obvious irritation and congestion typical of an allergic reaction). But apparently I'm not allergic to anything.
  • tilt-table test- visited a very well-respected cardiologist in Long Island who performed a series of tilt-table tests, looking for Neurally Mediated Hypotension. I had a positive reaction to the test only at the very tail end of it (i.e. not a significant reaction)
  • sleeping less- oddly enough, the only thing that seems to help somewhat is to get less sleep. I typically sleep about 8 hours a night, but I find that if I cut that back to 4-6 hours, I feel better during the day. Waking up feels horrible after so little sleep, but paradoxically I tend to have a better day afterward.


Thank You


Thank you so much for taking the time to read through this. If you have any advice or suggestions, please contact me at savemylyfe@gmail.com, or leave a comment on the blog.






77 comments:

  1. Looked up info on ME? http://en.wikipedia.org/wiki/Myalgic_encephalomyelitis

    But yeah, sleep less, eat a little meat, go out doors a LOT, walk as much as you can each day - like 5 miles a day if you can, move somewhere warm, drink loads of water...

    Good luck :)

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  2. Lupus?

    (I mean this in all seriousness. I have Lupus and find it immensely irritating that it's a running joke now)

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  3. Weird question... but have you ever been checked for Epilepsy. I have it and even if I am not having visible seizures I will sometimes get tingling, numbness, muscle cramps, inability to remember things, random fatigue and the desire to sleep a lot, inability to remember how to move certain muscles...

    My medication stops pretty much all of that.

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  4. Some symptoms sound like fibromyalgia (as you listed but tried a few drugs that didn't work). Could also be chronic fatigue syndrome (which I have—many of the same symptoms).

    My solution (I still have CFS) was to carefully manage my mental stress, which I do with yoga breathing techniques before bedtime and when I'm feeling particularly stressed out. Stress has real negative effects on your health, some people are more affected than others.

    I hope you find something that works for you soon. It took me several months to learn to reduce the stress, but it did eventually help.

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  5. I'm not a doctor at all, but I've been reading "The Promise of Sleep" by William Dement and some of your symptoms sound familiar to Restless Legs Syndrome. Have you looked into it?

    The author is convinced that lots of people go undiagnosed for years with this painful, but very treatable condition. It might be worth a look.

    Wishing you the best,

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  6. This sounds like hypothyroidism (http://www.endocrineweb.com/hypo1.html).

    Blogger Diana Hsieh solved her thyroid problems with dessicated thyroid and iodine supplementation. You can read about that here: http://blog.modernpaleo.com/2010/04/thyroid-update-my-energy-levels.html

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  7. Interesting that you mention Hashimoto's thyroiditis - Hypothyroidism was my first thought when I read your symptoms as my dad has it and is being successfully treated for it. Apparently the 'normal range' for thyroid hormone levels is quite large. I've read anecdotal reports of people being within this range but still feeling tired and unwell, who then improved with additional doses of thyroxine. It might be worth familiarising yourself with the thyroid regulation mechanism if you're not already (TSH/T3/T4) and checking your test results against some googled case reports.

    The Vitamin D effect also sounds like it might yield a useful clue to someone experienced in this area. Do you get enough calcium?

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  8. Oh my goodness...

    My first thought was to find a good doctor and make him stay until he figures it out with you... but since they have clearly failed you so far, have you tried homeopathic options? I'm fine with conventional medicine, but there are times when it just doesn't work, and natural means are all we're left with.

    If I were you, I'd maybe try a juice fast (lots of books about how to do it) and see if there aren't toxins or something.

    Have you ever seen a chiropractor? I know it may seem unrelated but sometimes they have a different POV and new ideas.

    Do you notice a difference when you get more or less sun?

    Have you tried reading Change Your Brain, Change Your Life? My husband has bipolar but had lots of side effects on medicines, ended up figuring out some of the techniques in the book on our own to help with coping before we even found the book. It definitely helps with understanding why we're the way we are, identifying a biological reason for it, and coming up with solutions. It's not a cure but maybe it could help with coping...

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  9. Take another look at Lyme disease. If you haven't seen the movie "Under Our Skin" you should definitely do so.

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  10. Test for Pernicious Anemia that prevents the digestive system from absorbing Vitamin B12:

    http://en.wikipedia.org/wiki/Pernicious_anemia

    I had a friend go through something very similar a few years ago - almost exact same symptoms, steady relentless degeneration, multiple ineffectual doctors and most of the incorrect diagnoses you list above.

    Finally one doctor figured it out - Pernicious Anemia. It prevents stomach from absorbing much needed Vitamin B12, which was the cause of most of the degenerative, incapacitating symptoms.

    She started taking daily B12 shots to compensate, since there was no other way to get B12 into one's body. That completely solved the problem, cured the symptoms, within a few weeks she was back to her normal 110% self.

    The doctor that finally figured it out noticed neuropathy in her extremeties - muted or complete lack of feeling in her hands and feet, and that clued her into the possibility of PA.

    I suggest it here since it seems to be one of the few possible diagnosis you haven't considered yet. Hope it helps.

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  11. Have you tried turning to Jesus.

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  12. Hope this helps... first bit is more useful, second's just my opinion.

    Firstly I'd suggest that you check out this post by my sister - http://ems-nutrition.blogspot.com/2010/02/how-to-survive-thyroid-failure.html. She's struggling massively to deal with Hashimotos it but is being wonderfully stubborn at getting the doctors to deal with it.

    Secondly I'd suggest that 5 years on anti-depressants and 9 months psychotherapy is the wrong way round. I'd look at psychotherapy as brain-training and pills as pharmaceutical profit.

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  13. I have a friend with similar symptoms. Turns out it's mercury poisoning from his fillings.

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  14. I remember reading an article a few years ago about a link between HPV and chronic fatigue. Not sure if there are tests or a cure for it though, so it may be hard to investigate.

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  15. Chronic prostatisis is often misdiagnosed in a case of something called "pelvic myoneuropathy" where the muscles in your pelvic floor clench due to stress.

    I have had this problem for years, and it is definitely related to stress & sitting in a chair at the laptop for 12 hours a day. I do some simple stretches (touching toes, pulling my legs to my chest on my back) try not to sleep on my back and it goes away. Also DO NOT ever drink Red Bull, Monster or other energy drinks. These were what triggered it for me.

    Maybe I can't solve the other stuff, but that one I can help.

    I've had light versions of your other symptoms, to the point where I saw a doctor. A morning run daily, no sugar / better diet and magnesium supplements have seemed to do the trick. Dramatically cutting back on sugar & losing weight definitely got rid of my fatigue and confusion, but I'm sure you've got that stuff down already.

    Best of luck.

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  16. Try an organic vegetable juice fast for a week and see if you don't feel any better - make the juice daily and drink at least a gallon a day.

    You can look up "Incurables Program" by Doc Shulze or Doc Shillington - seems to be a Natural Healing idea.

    Good luck!

    Also try reading Dianetics and see if it has anything to do with you. (Mental stress can cause physical illness.)

    Best,
    Aleksey

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  17. I would suggest seeing a Hemotologist and fully understand the implications of elevated IgA/Monoclonal Gammophathy.....and the possibility of having deeper bloodwork done. May reveal something.

    I would see a different Neurologist as well. And finally, perhaps a Geneticist.

    For 15 years, I have suffered from some inexplicable illnesses, most of which came upon me at a very early age. I have been on a 3 yr. madness of searching for the answers.

    I met a very compassionate Geneticist and he finally diagnosed me. I have been down the exact same road as you have for years....and I understand your frustration, pain and just what it does to your psyche.

    I sincerely hope you get close to solving your Mystery Diagnosis soon! (PS. ive realized most cases solved on that show are either by you on internet or a geneticist :)

    Good luck to you....Diane

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  18. I have no diagnosis for you just a couple of suggestions..

    Have you tried living in another part of the world for a while? Changing environment/diet significantly, especially being in contact with nature - if this makes a difference, it would be a clue.

    The other thing I would try is Chinese medicine (with a good doctor with experience). TCM is very good at diagnosing holistic illness *and* treating it, with acupuncture, herbs or a combination.

    (Your description of fatigue also reminds me of how I felt when I was vegetarian and suffering from B12 deficiency - always without energy and my concentration at about 30% of what it could have been. I started taking supplements and that helped until I changed my diet to compensate (lots of fish!)). Good luck and spend time in nature!

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  19. I went through a very similar illness for 5 years and could not find a cure. My doctors suggested that the best thing to do was learn to accept the illness as that would improve my standard of living.

    Anyways, after coming to terms with my illness and accepting that I would likely be housebound for the rest of my life, I came across the Lightning Process (www.lightningprocess.com), and was amazed to find that it worked. I was quite skeptical at first that something so simple could work, but it did and now I am fully healthy and active again.

    Good luck!

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  20. I would suggest going to these guys and getting a brain scan.. They seem to be the only people actually LOOKING at your brain while it is running. Read his books if you want more info on his approach.
    http://www.amenclinics.com/

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  21. You should really investigate heavy metal poisoning. Lead, mercury, etc. You can pick up metals quite easily from the environment and many of your symptoms are consistent with heavy metal poisoning.

    As some others have suggested, I would expand your search to alternative medicine practitioners -- but definitely get appropriate blood work done looking for heavy metals.

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  22. There are so many things this could be, unfortunately conventional medicine is terrible at understanding systemic syndromes like this, and alternative medicine is terrible at appropriate skepticism of their own bullshit. I think you need to attempt to leverage both. Try to listen to the cues that holistic types give off, keep pursuing conventional medicine. I am thinking some kind of severe food allergy could be a factor...

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  23. 1. Have you lived in the same house the whole time? If so, try moving elsewhere for a few months? Another climate might be worth a try.

    2. Have you tried doing radically different diets, just to see if something changes at all? How about RADICALLY altering your sleep and exercise patterns, again, just looking for some change that might give a hint.

    3. I've read stories of people with serious physical problems that were eventually solved with the correct SSRI. I assume you've tried Venlafaxine? I felt like I had an electric current running through me 24 x 7 until I went on that. Might be worth searching on antidepressant forums if you haven't already, I swear I've encountered others with symptoms like yours.

    Good luck, let us know if you find a solution.

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  24. I'm not a doctor but it looks to me like it could be chronic fatigue syndrome, as Scott W said. Have a look at
    http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome
    and
    http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395

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  25. Have you not been prescribed painkillers for this? Honestly some of your symptoms sounds like opiate withdrawel... Have you been on pain meds on and off? And if not have you tried any? I'm obviously not a expert at this, and I'm not saying painkillers are a soultion BUT I know many people who have life long illnesses including depression, and painkillers like vicodin or percect has made there life much more livable...

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  26. Hi here are are a few suggestions.
    1. Please keep a food log. Jot down everything you eat (you can use an app to make it easier). Then, post your entire food log on this site and let people look at it to see if they can spot anything.
    2. Mercury poisoning. You can take a test for mercury poisoning. Fish can be toxic, so it could come from there. Or you could have mercury tooth fillings that are poisoning you.
    3. Parasite. Gets a stool test and have the doctor test for parasites, including h.pylori.
    4. Try the Gerson Therapy diet (look at Gerson Therapy). It's a lot about raw juices, reviving your body. It has healed cancer in many cases.
    5. Environmental poisoning - could you be living near a electricity line? Try living somewhere else for a month, and see what happens.

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  27. What you posted sounds very much like chronic Lyme disease. If it is Lyme, you might notice that your symptoms get worse about every 30 days.


    Treating chronic Lyme is a hard thing to do. The antibiotics that you took probably helped kill off some of the Lyme bacteria but the bacteria are only part of the problem. The bacteria also produce a neurotoxin (hence all the neurological symptoms). Your body will naturally remove the toxins via the liver but to start feeling better you usually need to change your diet to remove all other toxins. The diet that was recommended to my wife is known as the "Pat Kane Protocol" and is essentially and Organic version of the Atkins's diet.

    Unfortunately most doctors don't know how to properly treat chronic Lyme disease so you would need to do a lot of hunting to find a specialist. Check out http://www.chroniclymedisease.com/llmd-referrals for some help on how to do that.

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  28. I would suggest a Rheumatologist for the elevated IgA and to rule out other rheumatologic disease (someone else had mentioned Lupus). Other things I would rule out: Wilson's Disease, HIV.

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  29. I second the chronic fatigue syndrome.

    I heard Bill Romanowski (former steroid abuser and NFL player) talking about all the concusions he had and he mentioned a lot of the same symptoms you mentioned. The last symptom he had was when he couldn't find his way back to his house, he knew he needed help.

    He said he had to "turn his brain back" on and decided to develop something which would do just that and this is what he came up with:

    http://store.nutrition53.com/n53/Memory_Supplements_Neuro1_by_Nutrition53-c72.aspx

    might be worth it to check out. A lot of the symptoms sound neurological to me.

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  30. it sounds like it could be acute mercury toxicity - read The Ultramind Solution by Dr. Mark Hyman

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  31. You should be tested for Celiac disease. Your symptoms sound similar to those I had before I was positively diagnosed and adhered to a gluten free diet. It's often misdiagnosed as chronic fatigue or fibromyalgia. Your symptoms do sound typical of Hypothyroidism, which I also have, and is associated with Celiac. I have heard stories of those with Hypothyroidism needing a much larger dose of Synthroid despite their blood levels showing that they're in range on lesser doses. If you do have Celiac disease, it would most likely cause problems with the absorption of fat-soluble vitamins, since the villi in the small intestines are damaged by the immune system. This _might_ explain your low vitamin D levels, although low vitamin D levels are pretty common across the general population from what I understand. The fact that you are gassy all the time and have frequent bowel movements also coincides with typical Celiac disease symptoms. Please educate yourself on the disease a bit, go see a reputable endocrinologist, tell him/her your symptoms and troubles, explain that you understand that those symptoms are common in those with untreated Celiac disease and you'd like to be screened for it. If they aren't receptive to your concern or don't seem knowledgeable, see someone else. Good luck!

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  32. Write down everything about every day in a journal. The human memory is extremely fallible and warps timescales. A detailed record of everything will prove more credible to doctors, and you may see a connection between things that you have previously missed.

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  33. You may also want to look into seeing a gastroenterologist.

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  34. Not a doctor
    Saying this happened in your twenties, first guess sounds like a combination of permanent Adrenal Shock and Rhinitis.
    Most of the symptoms sound like it would come from lack of sleep and Adrenal Shock means that you temporarily overload your brain with adrenaline though in your case it may be permanent. Rhinitis is a condition where you are constantly sniffling and almost nothing can be done about it. Make your doctor check for these things and hope you get better

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  35. Have a look at the Life Extension foundation. (http://www.lef.org/) I've been a member for 10+ years, my dad for 20+ (which is the reason I started.) They might seem like they are loonies, but their recommendations very often show up 10 years later in the mainstream population (Fish Oil is a good example.)

    They are currently having their annual blood test where you can get a battery of tests to help point you in the right direction.

    You can also call their specialists (Staff of Dr.s I believe) and get recommendations.

    I get a blood test annually via Life Extension and it has found out that my vitamin D was low (I now take 8000mg daily). It also found that my ratio of test/estrogen was off.

    The blood test sale ends June 7th I believe.

    I've learned a ton from them and wish you the best of luck.

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  36. Have you been tested for Celiac's?

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  37. I have no real wisdom or ideas about what it could be, but I feel for you and wish you the best. Only things that I could think to recommend would be TM (Trandscendental Meditation) and Acupuncture.

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  38. I would suggest finding a doctor that will patiently test a lot of the vitamin and mineral levels in your blood (I had to go to a naturopathic doctor for this, since all traditional doctors just told me nothing was wrong with me and I should move along). In my experience, doctors tend to discount the importance of these things even though they make a huge difference in your overall health.

    About six months ago I started having many of the symptoms you describe. I had fatigue, disordered sleep (sometimes sleeping too much, usually hardly sleeping at all), flu-like aching, small twitches in my muscles, and a hard time focusing/remembering things. Finally I was diagnosed with a severe Vitamin D deficiency. I took 7000 IU for 2 months and am now down to 4000 IU and saw a slow but steady improvement in my symptoms. You may want to monitor your levels just to make sure they are staying in a normal range and make sure you don't have any disorders that keep you from absorbing vit D properly.

    FYI vitamin D helps regulate your thyroid hormones and also helps regulate the cycle of your melatonin levels, so both fatigue and poor sleep could be related to a deficiency.

    At the same time my doctor put me on Magnesium supplements which very quickly cured my muscle twitches and helped with the aching, and vitamin B12 supplements which have made me feel much better as well.

    I'd also make sure you are tested for excess iron, copper, lead, and mercury, because most of your symptoms could be caused or worsened by heavy metals.

    You should also definitely follow up on both the excess IgA and the lyme disease. The excess IgA could develop into multiple myeloma (a type of cancer), so you should monitor your levels even if nothing much can be done to treat it. For the lyme disease, were you tested again after taking antibiotics? Symptoms can persist after the bacteria are gone, but you should make sure that the antibiotics did kill them off.

    Finally, as some people have commented, you may want to see if you have an allergy or sensitivity to wheat or dairy. I've eaten dairy all my life and loooooove it, but I found that cutting it back to nearly nothing has further alleviated my fatigue-type symptoms. Give it about three weeks and see how you feel. For a further test, reintroduce dairy/wheat to your diet suddenly after this time and see if you have a negative reaction.

    Good luck and keep us updated!

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  39. Have you seen a neurologist or neuro-oncologist? Certain kinds of brian tumors and cerebral spinal fluid issues can cause the symptoms you describe. I had periodic pain, trembling and tingling in my extremities and also sleep apnea and chronic fatigue. I was diagnosed with mono twice when I was 17 and 18 and diagnosed with epstein barr as a secondary condition. This explained the chronic fatigue. When I was about to turn 20 the pain in my extremities worsened and after removing a gall bladder full of gallstones, the surgeons send me for an MRI that revealed a large elongated tumor in my spinal cord that had developed a cyst. It is called an ependymoma and is very slow growing. It can occur at both ends of the spinal cord and symptoms occur only when the tumor puts pressure on nerves. There are also several other kinds of slow growing tumors in the spine/brain that cause neurological symptoms. There is also a condition that causes an over production of spinal fluid. Most of these do not show up in blood tests and even CT scans due to location and the blood/brain barrier.

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  40. I had a friend who was very tired at some point, and it was because it's organism was producing enough lead.

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  41. A consideration could also be testosterone levels. Low levels would explain the fatigue, lack of good sleep. Not necessarily the numbness or pain, but sleep deprivation has its own oddities.

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  42. Contact the Mayo Clinic in Rochester and get an appointment. Fly yourself out. Have had a few family members do this after many appointments with other doctors was unable to determine the cause of their various issues, and it's been effective for all in determining cause and course of treatment.

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  43. I'm with Phatty Patty et al., I vote Celiac Disease. It is supposedly hard to diagnose. Here is some info:

    http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

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  44. The tingling/burning/loss of sensation is called: 'Peripheral Neuropathy', it is caused by damage to the peripheral nerves, usually it starts from the parts furthest away from your brain and moves closer ( you may have noticed you started tripping more often before you lost sensation in your fingers )

    A couple of suggestions:
    1) check B12/Folate, if you suspect malabsorption get a B12 shot or take large doses ( your body is probably getting at least some otherwise youd be doing much worse )

    2) check glucose tolerance, you may be diabetic

    3) check for leukemias, elevated IgA could be a leukemia, a defect in production of other Ig's or you might be allergic to something

    4) get tested for celiac disease

    5) visit a genetic specialist to check for metabolic abnormalities <- this may be your best bet since they see the strangest things and your case sure sounds strange.

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  45. As a starting point, you can follow an optimal diet and see if that gets you anywhere. If it doesn't, at least you won't have to worry about diet and the things that it can fix.

    I'd suggest you follow Dr. Fuhrman's recommendations (see http://www.drfuhrman.com/ ), and/or get his book at http://www.amazon.com/Eat-Health-Weight-Younger-Longer/dp/097996671X

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  46. Have you checked for Pfiesteria?

    http://en.wikipedia.org/wiki/Pfiesteria

    I remember seeing a Discovery Channel show about it, and many of your symptoms, especially getting lost trying to get home was one of the symptoms.

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  47. Check Your Reality at the Door.

    http://maya12-21-2012.com/2012forum/ascension-and-awakening/poll-do-you-hear-perpetual-high-pitched-frequencies-you%27re-not-alone!/

    http://maya12-21-2012.com/2012forum/ascension-and-awakening/the-ascension-story/

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  48. Hi, maybe you could find something useful at
    http://www.patientslikeme.com/

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  49. Also, get tested for B12 and other B-complex vitamins.

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  50. I agree that celiac's is a good avenue to investigate. Wishing you progress! I hope you find a solution!

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  51. Find a Yoga center near you on http://www.artofliving.org. Go there and learn some simple breathing exercises as a part of what they call Basic course. Very helpful in conditions like this.

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  52. Have you considered contacting an expert homeopath? If traditional medicine has failed you it's worth a shot. This man works miracles: http://www.scnm.edu/stephen-messer-nd-dhanp.html
    I've personally been under his care for quite some time.

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  53. I don't understand why nobody has suggested http://en.wikipedia.org/wiki/Sarcoidosis

    It is not that common, but is is not that rare that the doctors shouldn't have picked it up. The thing is, although in most cases the disease is in most cases expressed in lung problems, it can actually affect all organs.

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  54. Hyperfunction of thyroid?

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  55. That looks like coeliac disease: http://en.wikipedia.org/wiki/Coeliac_disease

    It's quite common. It is not allegry, so it seems you aren't tested yet.

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  56. I don't know what is causing your problem, but try varying your diet to see if anything helps, just try to eat only one type of food for a while and see if it helps (or if it's worse), if it doesn't help, switch to trying a different food, e.g.:

    - try cutting out fruit and breads for a while (you might have fructose intolerance)
    http://en.wikipedia.org/wiki/Fructose_malabsorption

    My sister has that and she was very sick, until she found out that she can't eat most fruits now. Now she's fine, she just has to be careful what she eats.

    If limiting your diet to various different single foods does not help at all, you can pretty-much rule out dietary allergy as a cause I guess.

    I hope you get well :)

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  57. Hi my father is a doctor and I sent him a link to this blog asking if he knew what might be wrong, here's his response:


    He has classical chronic fatigue syndrome, on the same continuum as fibromyalgia and 'ME'. The best term is 'syndrome of central sensitisation'. "Gulf war syndrome, yuppie flu etc are all part of the same spectrum. It is akin to phantom limb pain.

    The problem lies in the brain, in the area of the brain that processes incoming sensory information before it presents it to consciousness, which is where we all live. Our brains have the capacity to turn up sensation in the short term to help us respond appropriately to a threat: for example people report that in a road traffic accident everything becomes vivid, and time slows down. This normally turns down after the threat passes. If the threat is severe enough, the memory may keep coming back in flashbacks and nightmares, and the person suffers anxiety and panic attacks. This is post-traumatic stress disorder.

    Some people develop the syndrome of central sensitisation after a major stress (I had a superfit tree surgeon, a felled tree landed on him but not a branch hurt him, but afterwards he developed severe generalised pain , couldn't sleep and was exhausted. He never worked again).

    The more common group are people who have major childhood threats, such as early bereavement, parental violence, bullying , sexual abuse etc. It seems their brains become hard-wired in adolescence to be in a permanent state of this hyper-vigilence. All they need is a 'second hit' later in life, some emotional or physical problem, and the whole process is triggered: central sensitisation ensues as a permanent problem. It's like a radio with the volume turned up too loud: there's nothing wrong with the signal or the radio, but the noise it makes is intolerable.

    In fact, sophisticated research tools have demonstrated chemical, electrical, blood flow changes and on functional MRI in sufferer's brains. In fact, there are physical changes to the brain in PTSD, with atrophy of the hippocampus.

    Listening to these unfortunate people is fascinating, because it is clear their suffering is so great and real, and it gives us insight into the variety of experiences that human beings endure. A character in The Tempest remarked how beautiful the island was - it is so sweetly perfumed and the waves breaking on the shore make such sweet music - whereas his companion said ' It stinks like a fen.'

    Treatment is far from satisfactory, especially for protracted severe cases.

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  58. The above post of 'jhollingworth' is worth a lot to me. I suffer from the same kind of problems. For me it is helping a lot to stay away from my computer and just relax after work. Just go out and have fun. Enjoy nature.

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  59. Hi!

    Just wanted to share this: your symptoms sound a really lot like my neighbours. Doctors suspected rheumatism and being a construction worker he got sick pension. A year after that he was diagnosed with lyme disease, had really heavy antibiotics and was cured 100%. In your case I would be my money on chronic lyme disease.

    Good luck!

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  60. I would wanted to shoot someone if they had told me this (and wouldn't have believed them) but to overcome my RSI the only thing that helped was "The Mindbody Prescription" by John E. Sarno M.D. If you've really tried everything else, might be worth a read.

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  61. It sounds like there may be more than one thing going on, and stress can't be helping.

    For the numbness, do you sleep on your back? I found that I had to change the way I sleep because I was pinching nerves by sleeping on my side and/or stomach. The less I slept, the less numb I'd get (this wasn't the "dead hand" type thing, this was a full-blown numb most of the day issue). When I changed how I slept (and sat) it went away (took several weeks though). This was under treatment of one of the best neurosurgeons in Southern California who wanted to try everything before operating. That's another thing you should watch for as you go to specialists - the very best often choose surgery as a last resort.

    Best of luck to you; let us know how everything goes.

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  62. You've got "autoimmunity" written all over you. I am not a doctor, but I have Hashimoto's and Type 1 diabetes, and I know that each of those is a result of abnormal autoreactivity in the immune system. Likewise for celiac disease, rheumatoid arthritis, and many of the other diseases that commenters above mention. The trick is, autoimmune diseases tend to travel in groups-- so if you've got Hashimoto's there's a fair chance your symptoms indicate a larger set of diseases all essentially caused by the fact that there is an imbalance in the regulation of your immune system.

    I don't know enough about all of the various autoimmune diseases to know which ones in particular you should investigate; but I would suggest starting here: http://jcem.endojournals.org/cgi/reprint/93/10/3663 (Mark S. ANderson, "Update in Endocrine Autoimmunity") and then continuing to research the varieties of autoimmune diseases and reactions that are possible, making sure to consult with your doctor and endocrinologist along the way.

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  63. If you compare your symptoms to the ones Dr. Maureen McShane lists she had herself when she had Lyme (http://www.canada.com/health/Lyme+disease+living+hell+Westmount/3004992/story.html), it sounds very much like you. Maybe you needed more aggressive and comprehensive treatment since it has been in your body such a long time. Apparently, Lyme treatment is controversial in the States and maybe your doc was too restricted in his approach. (I'm in Canada.) Dr. McShane took "two antibiotics, an anti-fungal medication an anti-protozoan medication and other supplements" for two years! Call her up and ask if despite your antibiotic therapy, it could still be Lyme. Her number: (518) 566-0672. Having been through what she went through, she will not abandon you.

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  64. (med student procrastinating before a big exam)
    these symptoms:
    intolerance to heat
    symptoms get better with less sleep
    inability to focus

    The only thing in my notes that links them is the Pineal Gland.
    Situated under the brain it secretes melatonin (for sleep)and controls cortisol (stress hormone) release.
    It normally calcifies (hardens up) with age. But it might not causing problems.

    It could be related to the pineal gland. No else has suggested it so far.

    Suggest this to a real doctor?

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  65. Gluten Intolerance?

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  66. Already been said - but your prostate issue is a symptom of your symptoms. chronic pain patients often have pelvic floor muscles tighten up in response to other muscular issues. This can make it difficult to urinate.

    Another idea: Have you ever taken a fluoroquinolone antibiotic? The most common ones are Levaquin and Cipro(floxacin). These drugs have been known to cause similar permanent side effects to those of lyme disease in some people. It typically effects the CNS and joints (tendons). Symptoms can appear up to 6 months after the course of antibiotic treatment, so many people do not associate the symptoms to the drug. This does not show up in any tests or blood work Do some googling to better understand this. I am a victim of Levaquin. BTW - Cipro was never ruled out as a potential cause of Gulf War Syndrome (previously mentioned by someone), as it was used to prevent Anthrax in US soldiers.

    Random note: anti-depressants supposedly work because they increase serotonin levels. Low serotonin levels have been directly associated with pain syndromes. So it's not about correcting your mood, etc... it's more about helping with the symptoms.

    Three things that I believe will produce a noticeable difference for you:

    -High quality fish oil
    http://www.amazon.com/gp/product/B000H3E10K/ref=oss_product

    -St. Johns Wart - supposedly increases serotonin levels in a natural way.

    -High Quality Whey Protein
    http://www.amazon.com/Source-Naturals-True-Whey-ounce/dp/B001G7R4HI/ref=sr_1_1?ie=UTF8&s=hpc&qid=1275625395&sr=1-1

    Good Luck... :)

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  67. Try an ACAM doctor in your area.

    http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457441/k.5E5F/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp

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  68. I do not see meditation on your list of things you have tried.

    I've found that meditation helps one to tolerate pain and discomfort better than anything else. Being specific, the following items on your list may be dramatically improved through meditation:

    * fatigue * non-refreshing sleep * memory loss, inability to concentrate or focus * muscle pain * confusion * loss of dexterity * nasal congestion, always having to clear my throat * heat intolerance- I absolutely cannot stand the heat- fatigue is magnified by it

    Most of your problems relate to either unpleasant sensations, lack of focus, or exhaustion. I would submit that all of these problems might be addressed through Vipassana meditation. http://en.wikipedia.org/wiki/Vipassan%C4%81 Vipassana is a technique through which you learn to observe, and not react to, sensation - pleasant and unpleasant.

    To put it simply: by cultivating equanimity, it can make pain not 'hurt.' This happens during a single hour-long meditation session, as your body aches, and with regular practice it continues through the day, and throughout your life.

    It is not magic, and it needn't be religious. I am not a religious person, and it works for me. It is exercise for your brain. See http://en.wikipedia.org/wiki/Pragmatic_Buddhism You can train your brain to not react to negative sensations. I honestly believe this technique can help you deal with your symptoms and lead a happy, productive life.

    I learned from this group: http://www.dhamma.org/ but there are many groups, and the technique itself is simple - but I suggest you find someone to teach you. Get a book, too. The man behind that site, Goenka, http://en.wikipedia.org/wiki/S._N._Goenka had terrible migraines, and searched for a technique to address his chronic pain until he found Vipassana. There is a high barrier of entry to Goenka's courses however, as they are 10 days (of silence) long. There are also restrictions on health conditions to enter a course, because they are very trying for healthy people, so you would have to exclude much of the information you have shared with us to enter. If I were you, I might do just that.

    You can get started right now: http://www.insightmeditationcenter.org/books-articles/medita...

    Specifically, check out http://media.audiodharma.org/mp3files/2007-10-03_GilFronsdal...

    You may not be able to cure your health problems. You can learn to deal with them and lead a happy life.

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  69. Have you looked into the Paleo diet at all? Cutting out grains (breads, cereals, rice - anything with wheat), legumes and processed crap has helped pretty much everyone that has ever gone on it.

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  70. Hi there,

    Your words, symptoms and experiences, simply echo my own.

    I have been ill for the last 22 years (I am 38 now).

    I have a fantastic carrer, a great husband, the bes children (and cat) even, a beautiful home.... life couldnt get any better.... If I could only cope with it.... I live in constant pain and exhaustion... Every day seems like a mountain to climb and, at the end of the day it feels as I have, indeed, climbed a mountain... And my brain (even when being a rather intelligent person) tends to behave confused, fogy and somehow autistic...

    I have tried eveything and visited all kind of doctors, who have had all kin of theories and suggested all kind of treatments (including psychotherapy... with results similar to yours)... One neuropsychiatrist told diagnosed me as bi-bolar (yes, I tend get depressed.... because it makes me depressed when I feel very bad... and a bit hyper when I am less tired than usual and want to do everything I can not do when I feel like dying) and sent me through a nightmare of drugs that didnt help at all and made me loose all hope... for a while...

    I have been diagnosed with CFS or Myalgic Encephalomyelitis.... And yes, very probably is that (all the symptoms coincide)... The problem is, nobody know what the hell is that exactly.... or how to cure it.... So it always seem that I go back to square zero...

    I have visited Dr. Kenny de Meirlier, a Belgian doctor who is, very, vet weird but that seems to be the only person who believes CFS or ME does not exist, but that they are the result of some other hidden problems. He is very controversial. And contradictory: his scientific research is impressive and seems extremely rational to me. He blames my CFS to severe intestinal problems and a series of allergies that could only be detected by special tests in a USA lab. I have been quite divided about following his treatment (and he warns that most people feel so much worst for a while that they tend to quit).

    He is weird, in deed, but has serious research institutes backing him up, intelligent and congruent research and seems to be the only person around who is doing serious research about CFS/ME. its causes and treatment.

    He considers that, taking in count how log I have been ill (and thus, my digestive system damaged) I should not expect a 100% recovery but that talking about a 50-60%, if following the treatment, is a reasonable expectation.

    So I decided to give it a try... since there is not much left to do and I have a life to take care off, I decided I had nothing to loose...

    His protocol includes a strict elimination diet, cognitive-behavioral therapy, a string of medications (that will come after a few months into the diet) and at the very end, some physiotherapy.... sounds scary, but reasonable....

    I have started with the diet and, even when it is recent and have not improved my symptoms at all (not that it was to be expected) I do certainly feel that eating is not as unpleasant as it used to be before... It doesnt leave me uncomfortable or blotted and it feels, kind of healthy.... so it is, at least, a good start...

    There is a lot of scientific research about Drs. de Meirlier in the web.... mut not much from patients experiences... dont know what to think about that....

    If you want, I can let you know my progress and see if it is relevant for you.

    Kind regards,

    Valeria Siemelink

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  71. I would suggest going to website of endocrinologist Ray Peat and reading his articles about polyunsaturated oils and thyroid (and possibly others).

    http://raypeat.com/articles/

    I have had exactly the same symptoms as you have and they are not particularly difficult to fix if you know what are the real causes, which should be obvious from Peat's articles (also Broda Barnes, Mark Starr and other thyroid researchers).

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  72. I have to echo some of the other responses: If you already have an autoimmune disease (thyroiditis) you are more likely to have additional disorders of the immune system. SLE (Lupus) being one of the most common co-occurring disorders and it can be sero-negative, meaning it doesn't show up on bloodtests. With an elevated IgA, it says your immune system is over-active, which is typically common with autoimmune-based disorders and they can cause all kinds of widespread strange problems. Also if you've had a history of Lymes, this can cause long-term nerve damage (if they haven't done an EMG, they should--this will determine your muscle functioning and also whether your nerves are actually damaged or if the pain is due to an inflammatory process) and it can also lead to post-arthritic symptoms. Once it reaches this point, antibiotics are no longer the issue—it’s your immune system that becomes the problem. Autoimmune diseases consistently produce generalized symptoms (fatigue, memory loss, sleep disruptions, etc.) and specific symptoms (muscle pain, swelling, heat, redness and joint problems—depending on which type of disease) and systemic problems (kidney, heart, neurological system etc.)—as such they can look really wonky and be elusive. Also sometimes you need to try medication for it to see if it helps if you are sero-neg for autoimmune diseases.

    If you are IgG deficient, this may account for chronic sinus disease and for intermittent hearing changes as it makes you vulnerable to certain types of bacterial infections. If you are IgE elevated, you have an allergic disease and this is causing sinorespiratory issues (allergy testing only goes so far as what they test, you can be allergic to weird things). If you have a chest CT and your thymus gland is enlarged—this coupled with neurological and pain and fatigue symptoms could be Myasthenia Gravis (autoimmune disease)—there are blood tests for this now. If you are having intermittent balance, hearing, changes in smell or taste, transient paralysis, numbness, parasthesia (tingling) it can be Migraines or Epilepsy. Epilepsy can be difficult to test for and if there is any hint of irritation on a short test, you should ask for an inpatient 3-day study. I was diagnosed through a 3-day study only to learn that my sleep problems was due to the fact my brain went into a seizure every 5 minutes and it was incredibly severe. Doctors initially thought I had no problems, but one went with her instincts and ordered an inpatient study.
    If you have pain in your lower back or back in general ask to tested for Ankylosing Spondylitis—very common in men and also an autoimmune disease. As you have dysfunction in the gastric area, you are at greater risk for Pernicious Anemia, a deficiency in B-12—this can lead to a wide range of neurological symptoms and general feelings of being unwell. Mitochondrial dysfunction—there’s a lot of new research on the role of the mitochondria in disease and they are finding that individuals who have dysfunctions in this cellular pathway can present normal diseases really weird and lead doctor’s to miss the boat. It’s worth asking about.

    Best wishes and keep us posted!

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  73. From a lab techs standpoint... I'm not a doc, but I do many of the tests you described on a regular basis. I know that when testing any kind of an immune response, like your allergy tests for example, some medications can interfere with those tests giving you unreliable results. Any medication that lowers immune response, such as steroids and some antihistamines may adversely affect the result. I see a lot of patients for food allergy testing, and we ask them to abstain from those meds for at least two weeks prior to the testing.

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  74. I would recommend for you to be tested for myasthenia gravis.

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  75. What is interesting is what you aren't telling us. What is your real diet, list a week's worth of what you actually eat. Are you fat or skinny? Height? weight? Post full body pictures (block your face if you must) What do you do all day? Sit in a chair and stare at a box? (very bad) Lift heavy boxes? Work in a toxic chemical plant? Are you angry, depressed, or frustrated most of the time? How would your friends describe you? I think if you look at what you are subconsciously hiding and not telling us, it will reveal a lot and probably help you.

    I wish you the best.

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  76. hello every1 i was in uk i came back now i am in greece athens i am in very bad situation can you read my story and help me please.

    my name is Ali mohammad i was living in UK
    i stayed there for five years but unfortunately i was send to afghanistan
    this is a very bad reminder in my life-for three years i have been living

    in afghanistan -i am in a bad situation in reality i am near to be die-speculations
    and sorrows have made me very bad every day i smoke more hashesh
    10gr to 20gr on the other hand the situation of afghanistan is very dangerouse
    there is no secure there are so many suicides and they attack everytime
    Taliban are much stronger the situation get wars from day to day-many times

    American troops arrested many peoples-they arrested a person in the name of
    palawan in our twon on date 22/10/2009-after the issue alarge humber people
    gathared they held a rally against the foreiners they closed schools roads
    hospitals twon offices- about a month later Taliban put a letter in my house door

    they had written in the letter you are intelligence worker with foreigners also they
    had added -you should go on trail we will capture you-now i am in a begger danger
    i have lift my home-if i stay home Taliban will capture me,you have to help me
    please recover my life

    contact on
    email-ali_mohammad200400@yahoo.com

    ReplyDelete