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18 years old, NYC, CFS all life, in need of suggestions

Discussion in 'Lifestyle Management' started by Dmitri, Oct 13, 2012.

  1. Dmitri

    Dmitri

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    Hi to everyone on this forum. I was browsing this forum for over a week and it was relieving to see so many familiar thoughts in text. This post will encompass an introduction and financial questions, so if another board is more appropriate, a moderator can move it. I chose this section because it's so general.

    I was born in Ukraine on March 12. From what my mother told me, I had exceptional health initially. My age was about 12 months when we moved to a cold apartment. I began to show symptoms of illness. It started when my parents took me to a doctor who treated me with antibiotics, resulting in a severe reaction (non-stop crying, entire mucosa becoming red, etc.) The following day, I was (orally) given an increasing dosage of a diuretic drug. This led to much more problems especially in GI tract, where many of my current symptoms take place.

    My family moved to NY late December 1997. There were many doctor visits afterwards, where I had different antibiotics, drugs, vaccines, etc. forced on me, obviously crippling me further. I exhibited obvious adverse reactions to their venom, and the absurd responses I received included: "It's a coincidence, antibiotics can't cause this!" or even "This is impossible, he should see a psychiatrist." The last time I was directly attacked by the pharmaceutical industry was probably around age 7, taking another drug would very likely destroy my nervous system.

    For as long as I remember, my life has been a never ending hell where the magnitude of the symptoms varied. My nervous system is wrecked. The pain is the worst, almost every part of my body brings has its own pain including head, stomach, teeth, legs, intestines, eyes.... The most intense is on the sides of my head, becoming very severe on different days with pressure and throbbing. Most regular activities are difficult for me - breathing, sleeping, speaking, walking, eating, moving thinking. Either because of fatigue or the movement will aggravate the pain further. All days and nights are painful and exhausting in every way imaginable.

    My body is hypersensitive to all environmental factors with cold temperatures and drafts being the most common trigger. I instantly feel a sore throat, mucus in my throat, weakening, etc. from low temperatures. Drafts are significantly worse than wind. Continuing in this rotten, creaky, pre-WWII building since 2002 doesn't help. I am always tormented by drafts, the windows are very poor and let everything through, we struggle to tape up the slits etc. but it doesn't help. There is also an increasing mold infestation, a hurricane last year soaked through the windows and rotted them thoroughly. If I approach them, I feel a toxic odor that induces dizziness. Winter takes a massive toll on me with brutally cold weather and diseases.

    I have to be very careful with my diet. All chemicals, artificial ingredients, colors, are definitely off. Anything sour, cold, hot, scratchy, capable of causing mechanical (chips, nuts) or chemical damage (acidic, artificial flavors) is also dangerous to ingest. The symptoms become visible in my mouth, and begin to effect my whole body. Even a mildly acidic fruit, the surface of my tongue will be visibly burned off. Eating the wrong thing instantly changes the feeling of my entire body.

    My mind is also never at peace. Under a cloud of pain and brainfog, thinking is difficult. If the brainfog wasn't enough, I also have OCD and anxiety forcing me to repeat physical and/or mental rituals every second of the day, flooding my mind with horrific thoughts or images.

    My symptoms spiked in severity at different times in my life. School was obviously a big problem throughout my life, where I missed many days. Sitting in a crude painful seat while being exposed to drafts, restlessness, etc. was utter torture. School officials were unhappy that I couldn't always attend school or incapable of following their orders like a dog. In high school, I was able to stay on average grades of 85-90% in the first 2 years.

    During my junior year, the symptoms rose in severity. I began having diarrhea every day (whereas I was constipated all my life). The worsening of IBS was the most obvious change, but every aspect of me was crippled further. Life became much worse as the pain, fatigue, dehydration etc. increased. The ability to digest important foods like potatoes and chicken was lost as well. I struggled to maintain a passing grade (65%). Failing and retaking several classes, I finally managed to pass this year and barely recieved a high school diploma. A huge contrast with other times, when I was capable of finishing multiple state exams in the 95-100% range.

    My cognitive abilities are reduced dramatically, it is hard to think in the middle of so much pain. On days that I have the diarrhea, the headpain and fatigue intensify. Recently I had a few days where these symptoms slightly calmed down. I felt weak signs of confidence, even ambition despite the massive pain. Then the IBS-D returns, and I am drained of life once again. The decay of my underdeveloped teeth has accelerated considerably with half of my wisdom tooth is missing already and the other half progressively rotting.

    When the IBS, headaches, etc. calm to a degree I feel a large amount of sorrow because of the of the ability of thinking more clearly. I start being more self aware of my potential, and where I would be if it wasn't this disease. I even begin to form small plans of getting some sort of college degree, I never got a chance to deal with or even put thought into any college business or applications in my last two years of school.

    My mother and sister are in similar condition to me, with similar causes. While being sick for a long time, she was still able to perform activities like walking to the store regularly. Her blood iron levels became dangerously and had her admitted to a hospital. After being forced antibiotics, she became in much worse condition and was bedridden, her height even decreased noticeably. This happened two years ago. My father was always apathetic to this. Always choosing to ignore or deny what was happening to me, with predictable answers and tropes that I'm "Faking to avoid school.", threatening to send me to a psychiatrist, etc. It is one of the most disgusting examples of behavior I ever witnessed in a person.

    Right now I am only a burden to my mother, I cannot work to provide funds or attend college. If I am to survive, I need an income. This is where I need suggestions and legal advice, I imagine the struggle to receive any form of welfare will be very difficult, and I honestly have no idea where to start. I hope to improve my condition soon, at least to where I was two years ago, I was in a lot of pain even then, but I had more reasonable cognitive power and physical strength, I would even be able to attain a low level college degree. Signing up for college is another area I need assistance in.

    I spent part of this summer in San Diego. I am aware of its yearly mild climate, and moving there would be a blessing for me. Escaping from New York's brutal weather would be key if I hope to recover. If enough strength is gained attend college AND move to San Diego area, it would be ideal.
    While me and my mother were living in mystery of what this condition was called, searching on the internet led to a conclusion of CFS and dysautonomia. Last May, I finally received a diagnosis for CFS from a specialist in Manhattan.

    I always think of the easy way out, but weak signs of hope and motivation and the will to experiment with in diet kept me away from it, it is difficult to explain in words. I wish to recover my health from the destruction of medicine and see what having a real life is like. Although so far my suffering has been lifelong and I'm unaware of how a truly healthy being feels, I still believe I hold enough of an understanding of how the life of a healthy person is - lack of constant pain, energy to perform all tasks with ease, will to live, etc.
     
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  2. Marlène

    Marlène Senior Member

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    hello Dmitri

    welcome, you will get some good and sound advice from people here.
     
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  3. madietodd

    madietodd Senior Member

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    Hi, Dmitri, and welcome here. I think you will find lots of support!

    If you are willing and able to move, maybe you could research CFS doctors, and choose a healthy location with a good specialist. I think our complicated problems are too much for normal doctors - they really don't know what to look for, or how to best treat us.

    Good luck.

    Madie
     
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  4. LilacGardenia

    LilacGardenia

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    Welcome! I'm 19 and I've also had my awry nervous system for as long as I can remember (from dysautonomia, not CFS, though. There's few people in our age group on here, but I know several have made Youtube vlogs or run their own blog. You might be interested in those. The forums have helped me out a lot as far as learning more about treatments and knowing I'm not alone. Hopefully they help you out too! :) I wish you the best, hopefully you find some good treatments. Keep on fighting and don't be afraid to stop by here when you need a bit of support. There's always people on chat and posting on the forums. God bless you! <3
     
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  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Your state sounds very fragile, I think you should build up your strength before moving across the country to live on your own, with no family or support nearby? Is there someplace you can live without moving far, your living conditions sound detrimental to your health! You shouldn't be suffering so much living inside a building.

    Did you find a good Dr in NYC? I hear Dr. Enlander is good, so hopefully you can regains some health within a few years!

    http://www.co-cure.org/USA_NY.htm

    I just had an appt with my Dr on Tuesday, and realized I have been seeing him for 4 years now, and he has helped me a lot. I also have the same sentiment as many on this forum, I think this site has helped give me Treatment ideas to discuss with my Dr.

    GG

    PS Very well written for someone with Brain fog!
     
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  6. Dmitri

    Dmitri

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    Thank you for the warm welcomes.

    It's a surprise to see someone in my age group :) I have dysautonomia too and assumed many here do . I thought CFS and POTS almost always have a grey area in cases of both diseases. The specialist who diagnosed me with CFS did confirm orthostatic intolerance. I would like to see those vlogs and blogs, please link them here.

    I agree that normal doctors are detrimental, and in my case they are the cause of all suffering. I will definitely need to move when I have sufficient energy. It will probably require eligibility for a welfare program, and that will be very hard to be accepted for
     
  7. Dmitri

    Dmitri

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    Thanks for the list, I also see the one who diagnosed me (Susan Levine). My mother also seeks to move to San Diego or, at the very least, escape from this apartment of misery. Moving to San Diego is financially impossible at the moment. We don't receive any benefits outside of foodstamps.

    And thank you for the compliment :) The pain and brain fog doesn't always allow me to communicate, even online, so my responses sometimes be delayed.
     
  8. merylg

    merylg Senior Member

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    Hi Dimitri,
    So sorry to hear what you are going through & have endured all your life. I hope you can find a good Dr who can help you, but I understand the whole financial issue. I agree with Madie that a good Immunologist who specialises in CFS & similar could help you. Along the way you may also see a Rheumatologist, Neurologist, Gastroenterologist & dentist.

    You may have some inherited immune deficiency given that your immediate family also have issues. I have similar mucosal issues to you & symptoms that cross a bunch of specialties. I am also sensitive to drugs and chemicals, affected by mold issues, have gut issues (in my case oesophageal & gastric ulceration/irritation, food allergies & sensitivities), susceptible to skin infections etc etc. Also super-sensitive to cold & damp...get cold extremities in Winter. Sensitve to heat as well.

    You may want to consider Behcet's Disease which had it's genetic origins in Eastern Europe & the Middle East. It's distribution followed the Old Silk Road trade route to China. Behcet's is an autoimmune vasculitis & it's effects are multisystemic. Mucous membranes & skin become susceptible to infection. Neuroinflammation can occur. Westerners can also inherit this disease but it's incidence is higher in Eastern Europe & the Middle East.

    Your reaction to potato may be a true allergy to the protein potatin. It may also be a reaction to the chemical solanine in all the nightshade foods. I have to avoid white potato (hard as I used to eat it nearly every day!), tomatoes, capsicum (bell peppers), chillies, eggplant (aubergine) & tobacco!
    The chicken may be a reaction to the chemicals/antibiotics used in raising chickens. Have you tried organic/chemical free chicken?
    I found I had to eliminate coffee as it gave me a true allergy that caused huge infected hives on my back.

    I did 23andMe genetic tests recently & I came out susceptible to a bunch of autoimmune diseases like Coeliac, Crohn's, Behcet's, Systemic Lupus etc etc. I am also at higher risk for the inflammatory condition Ulcerative Colitis & more susceptible to Oesophageal Cancer, Stomach Cancer & CLL.
    It was an Immunologist/Allergist/Physician who helped me with the food allergies & sensitivities. I had to do an elimination diet & keep a food diary of reactions as I re-introduced foods.

    I am now following up on the Behcet's possibility with my Rheumatologist. Other inherited conditions that can cause vascular issues are Connective Tissue Disorders like Ehler's Danlos Syndrome, Marfan's, Collagen Vascular Diseases.
     
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  9. Kina

    Kina Moderation Team Lead

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    Ontario, Canada
    Hi Dmitri.

    Welcome to the forums. Sorry to hear you are having such a rough time. Hopefully, you can find some good information and support here. :)
     
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  10. mellster

    mellster Marco

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    So sorry to hear this, I am sure you will find plenty of good information on here. The only advice I can give is is that I believe you are on the right track with trying to fix your gut which is central to getting enough nutrients, vitamins, and minerals into your body, regulate the hormones and promote a healthy immune system. Chances are at least decent that once the gut symptoms get fixed a lot more will fall into place (maybe start looking into B12/methylation and MAF314). All the best..
     
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  11. vli

    vli

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    Dmitiri, I was gonna ask which specialist you saw, but did you say Susan Levine? I just wanted to say I'm in NYC too having moved here in January from Hong Kong to get Ampligen from Derek Enlander and you're welcome to write me anytime or even meet up to talk if you feel like it. Just send me a PM and I'll respond.
     
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  12. justy

    justy Senior Member

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    Hi Dimitri, i just wanted to welcome you to the forum. Your sitation, and that of your families sounds very tough. I agree that moving out of a moldy apartment, moving to a milder climate, getting your teeth fixed, and seeing an M.E specialist would all be a good way to go, and perhaps with this approach you would see some good improvements in a year or two.

    But i am aware that due to financial considerations this would not be possible for you right now. I'm afraid i dont know enough about the welfare/health systems in the states, so ic ant give you any advice about how you would go about funding these much needed things. If i were in New York and had the funds i would go ans see either Dr Enlande or Dr Leo Galland - Dr Galland has a great book that i found very interesting - you can find his books on Amazon.

    I am also wondering if there is any chance that you are suffering from radiation poisening, from the Chernobyl accident. Don't know if the dates add up - but it could expalin the problems for your family members too. There has been some discussion on another thread recently about the similarity between radiation damage and CFS.

    I wish you well in your quest for better health and a better life,
    Take care, Justy x
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    Welcome to the site.. I found your story very sad.

    Your POTS.. Im wondering what you currently are doing to treat it?? (there is quite a few different things you can be doing there even without a doctors support.. if nothing is currently being done about it.. I suggest to start there). Dealing with the POTS/OI stuff some may improve your health enough for you to easier be able to move etc. (your appartment with that mold sounds very bad). POTS can give or make a lot of symptoms worst.

    How are you also with taking vitamins? The methylation procotols have helped many.
     
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  14. caledonia

    caledonia

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    Hi Dmitri, and welcome to the forum,

    First off, sorry you're so sick. I'm glad you could see a good specialist like Susan Levine. I'm assuming she had to also consider the various genetic diseases that Merylg mentioned in order to make a CFS diagnosis? Have your mother and sister also seen Dr. Levine and/or been diagnosed?

    Getting out of the bad apartment would be a first priority. My suggestion would be to start taking steps for moving, getting on disability, etc. even if it seems impossible or will take years. You may be able to qualify for some kind of Section 8 housing. It's usually in short supply and takes a long time to get in, so get your name on the list now.

    I also suggest that you, your mother and sister all apply for Social Security Disability. If you can't work full time, or if younger, go to school full time, then you're eligible. Go to ssa.gov for more info. Would Dr. Levine support you going on disability? Would she be willing to fill out her part of the paperwork for it?

    Since your family is on food stamps, which requires very low income to be eligible, I get the impression that your father is out of the picture - no longer contributing financially? What is the situation with that and could he be forced to contribute financially?

    When you went to San Diego did your health/energy/pain improve any? Have you ever gone anywhere else (like on a vacation) for a week or more and had improvement in symptoms?

    One other idea on the apartment would to try to make the current one better - could the landlord be made to weatherize it and get rid of the mold/replace the rotting window frames? Or could you qualify for a low income weatherization program and just get your own apartment done?

    The second priority would be start working on your gut issues. A basic gut program would be to go on a gluten free/dairy free diet, and take probiotics, digestive enzymes and possibly betaine hydrochloride if your stomach acid is low. Google "baking soda burp test" to get info on how to test for low stomach acid. Any other supplements will have a hard time absorbing, and pretty much be a waste of money, unless your gut is working well.
     
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  15. Dmitri

    Dmitri

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    I appreciate all the responses, they mean a lot to me.

    The only other family member that I can make a relation is my mother's father. He didn't have CFS or dysautonomia, but reported suspicious symptoms matching them after consuming alcohol. He died in 2001 by car accident, so I have no way of knowing the details. I never heard about Behcet's disease, this is something new to research.

    I actually thought about purchasing a 23andme kit next time they hold a sale. Radiation (from Chernobyl) is worthy of investigation but it's unlikely. My family is from Dnepropetrovsk, southeast of Chernobyl. I checked several maps of how fallout dispersed with a noticeably northwest wind, it doesn't seem like that area was particularly affected, although other places as far west as England seem to be equally affected. Regardless, it's probably in my interest to avoid all sources of radiation poisoning, including x-ray scanners in airports.

    My staple food is mozzarella string cheese rolled up in white flatbread with no artificial additives aside from the vitamins it's fortified with. Bread and cheese have to be in combination, white bread by itself raises acidity very high. The effects are felt in my stomach, and my saliva begins to taste acidic. The protein in the cheese buffers this effect, thankfully. Grey bread is superior of course, and I did better on it than white bread, but most of the brands either began adding chemicals or have a higher rye-wheat ratio now. To make it clear, white bread gives the problem of raising acidity, while black bread is immediately acidic by itself, without raising it in stomach or attacking teeth. I experimented with taking bread out altogether, it didn't end well. I found that my stomach acid goes out of control without bread, to the point of feeling a hole being burned through it.

    Butter and other animal fats can be very helpful with providing energy and soothing effects. In late summer 2011, I reintroduced it into my diet. I probably wouldn't have a chance to finish 12th grade at all without it. There are, however, times where I have trouble digesting fat and I'm better off without it. I try to get most vitamins and minerals from natural sources, periodically consuming rich foods like oysters and beef liver. I also ordered a minimally processed brand of cod liver oil for vitamin D (Sonne's), I am deciding if I should open the bottle right now. If my gut doesn't accept it, the whole bottle will probably be wasted since it will spoil.

    The level of POTS symptoms, including dehydration and orthostatic intolerance rises with everything else. So if I have increased pain and fatigue, it comes with stronger dysautonomia. Environmental effects like chemicals trigger it more. I also keep an eye on my sodium-potassium ratio. Eating potassium rich foods like watermelon or banana causes me to urinate more than usual. Potassium needs to be compensated with salt, but I have to be careful when I consume salt. Whole, undissolved crystals will eat away and grind my lining. The food needs to be prepared with salt prior to consumption, or the crystals have to be dissolved thoroughly. Bending down or hanging upside down will give me a sensation of my head exploding, so I avoid those movements. If my condition allows it, exercise can be helpful because of brief soothing effects after it.

    I was the only one who was diagnosed by Susan Levine. My mother did not get an official diagnosis, but is currently undergoing tests like the tilt table, with results being positive so far. My sister is 11 years old and prefers to live in denial, refusing checkups by doctors for a CFS diagnosis. My father lost his job due to changes in his employer's policy, and has been on unemployment which is due to run out soon. It would be best if my mother lives separately from him, as his pathetic behavior and antagonizing of her causes a lot of stress.

    San Diego's mild and dry climate year-round makes it perfect. I'm sure there are places that are even better, but San Diego's constantly temperate state is what makes it perfect. Outside of where I was born and NY where I resided all my life, I've been to Moscow, Germany, Belgium, Netherlands, and France. An example - Paris, was still fairly cold in May, but slightly more mild than the damp and cold New York. The cities on the north sea (Antwerp, Amsterdam) were considerably colder, and had pros and cons in climate compared to New York. Hot, humid settings are also problematic. Strong heat is very bad for me and humidity makes it impossible to breathe (it gets like this here during the summer.) Survival requires open windows and air conditioning, both bring a host of new problems. The landlord is not cooperative and action should be taken. It would have been very helpful if we took pictures of the windows right after the hurricane.

    Vli, I've been wanting to see someone like this for a long time and will make sure to let you know when the opportunity comes. Susan Levine is the doctor, yes. Her research seems to focus on links between viral infections and CFS.
     
  16. Dainty

    Dainty Senior Member

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    One thing to consider, possibly in conjunction with the treatment you're doing, is being evaluated by a specialist in cranial osteopathy. Traditionally, osteopathy is about discovering and healing traumas that have happened to the body that your body is being blocked from healing on its own. I don't know what your birth was like, but for most babies, birth is a trauma, and depending on environmental factors their bodies may or may not fully recover from it. The concept would be that while your body was in this state of attempting to recover from the birth then there was a severe shock to the system that it was unprepared for, and that "locked in" this state.

    Quoting from the link I gave in the above paragraph:

    Osteopathic Physicians perceive this disturbance as a “shock” or irritability that establishes itself in the nervous system of the infant; and the potential cause of many problems. Though no apparent trauma may have occured, the infant may be irritable, weak, or susceptible to infection.​

    Osteopathic treatment eases the shock, and restores vitality; allowing the nervous system to relax and heal...so that the normal maturation processes can follow. Not all problems can be resolved, but many can be eased. And for some, Osteopathy is the answer.​

    I'm one of those for whom osteopathy seems to be the answer. For a little background on my history - Since I was a teenager I've had a textbook case of severe CFS, along with ever worsening life-threatening chemical sensitivities, allergies (eat 5 foods total), and moderate Fibromyalgia. As a baby I had countless ear infections, to the point where I became partially deaf. Growing up I got sick more often and took longer to heal from the normal stuff going around, and then a final straw did me in and I became 95% bedridden for several years. I lived in a stripped down bathroom for 3 months because any other location caused breathing issues from the chemicals, and then moved into a porcelain trailer which saved my life. I now can go out - if I wear a gas mask.

    My first treatment of cranial osteopathy I felt intense relief, like I was able to rest deeper than I ever had before. Week by week I saw my symptoms disappearing, and after about 5 months they were about 85% gone. Previously I needed alergy meds several times a week - now I haven't used htem in months. I still require a caregiver, still have some brain fog, and occasionally some pain, and for now still need the mask most of the time. But literally every week I'm seeing improvement, my PEM is gone and I feel my body healing. It's amazing.

    If you consider this route, just make sure you get a really good one who specializes in it full time. Whether or not it's the complete answer for you, they'll be able to tell if there are strutural problems causing hte nervous system to freak out so much and to calm it down. One thing really nice about cranial osteopath D.O.s is that "believing" you doesn't factor into the equation at all - they can feel there's something wrong. And what's also really nice is that testing and treatment are included in the very first appointment, and every appointment thereafter, because their equipment is their hands, and the results are instantaneous.
     
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  17. Wayne

    Wayne Senior Member

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    Hi Dimitri,

    Welcome to the forum. So sorry to hear about your difficult situation. All the best in making a move out of NY. I think you're a good writer! :thumbsup:

    Wayne
     
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  18. xks201

    xks201 Senior Member

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    Check all the hormones for even minor deficiencies...partial panhypopituitarism comes to mind. I'm not as young as you but I got CFS around your age. CFS striking that young I would think is some hormone deficiency. See a competent endocrinologist who can test everything...AVP, TSH, T3, T4, sex hormones, 4x daily cortisol levels, dhea..etc. Get a growth hormone STIMULATION test (not an igf-1 test). Your nervous system is tweaked most likely because you are deficient in one of these hormones. Take a strong sleep med (even if you have to go get xanax from the doc) to sleep. U MUST GET SLEEP. Then go to a university and get genetic testing if you can afford it.
     
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  19. Koivy

    Koivy

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    Hi Dmitri,

    While I'm a decade older than you, I first became disabled at 23 (with years of symptoms beforehand). The ideas everyone has given has been great! I hope to try cranial osteopathy when I have funds, as well.

    I noticed that you said you were surprised to see someone in your age group. I belong to an online support site for young adults (18-40) with neuroimmune disease called www.healkick.com. It's helped me a lot with the social isolation. I want to get better asap, but in meantime, I figured, might as well find some supportive friends who understand!
     
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  20. nanonug

    nanonug Senior Member

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    Dmitri, I am very sorry to hear about your tribulations.

    Reading your post, I am convinced enough to recommend you subscribe to the Mastocytosis Society mailing list and describe your symptoms. People there will then be able to tell you if they think you may have mastocytosis or any other form of mast cell activation disorder. They will also be able to make a recommendation regarding a "local" doctor.

    Meanwhile, things you may try to see if it helps (all these are available OTC and have cheap white label versions):
    • Benadryl (diphenhydramine) after dinner (this makes you sleepy)
    • Allegra (fexofenadine) in the morning
    • Zantac (ranitidine) twice a day (morning and after dinner)
    If you have some spare time, here is a three part video on mast cell disorders:
    I also have a post on this site regarding mast cell activation symptomatically.

    Let me know if you have questions.

    Good luck!
     
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