h1n1 gbs/cfs/cdip help need diagnoses

Posted , 4 users are following.

i use to hunt from start of hunting season to the end of it walking all over

i use to play floor hockey played road hockey challenge, and at church

i use to work 100 hours or more in two weeks yes people there where asking if i keep a bed in the back. before taking sick as a housekeeper at a hospital as a casual

remember when the doctor told you geez i wish you knew exactly when you felt like that well i got all that documented but it don’t matter if the doctors wont make copies of it....., I have documented my problems from when they started giving me trouble on dec 15 2013, As per my job was in jeopardy, threatened by not being paid, for missed appointments for the 3 shots mmr, hep b, h1n1 . By December 5 2013 i made it in for the shots, now prior to this date I worked full time hours plus as a casual housekeeper.

when I was first admitted I "thought" I was diagnosed gbs and treated with ivig and going to phyiso for Gillian berry syndrome. I went to the hospital in a wheel chair after the 5 dose of ivig treatment i walked out back to work 3 weeks later only to relapse .But at the doctors appt I made i was told I was never diagnosed with gbs….

my doctor is out of options asking me what do i think....

well i told the doc

1) give me the ivig treatment

that when i first went into the hospital in a wheelchair and walked out of hospital

answer: no diagnoses no cant just give you something without knowing whats wrong...

2)send me to a microbiolgist 

they can look at my blood and determine if it is a virus

 another appt: which took 4 1/2months to get an appointment with a physiatrist sept 2

now I have been seeing a physiologist which sent me to see the physiatrist who is sending me back to the physiologist "when I am ready to go" i said make it now! if it takes so long to get an appt with you he replied oh i was on vacation it wont take that long you will get a call in 2 weeks..lol its now oct 2

the physiatrist who said it sound like "it may be issues in your past" what part of the mind can make your body go totally numb even when I brush my teeth along with a lot more issues.


when i go to stand and walk i never know if ill beable to get up or where the pain will be...

fatigue: i was in bed forgot pillows on couch to stubborn to ask for wife to go get them on way out to couch fell on floor couldnt move coulndnt pick up my head she came out got my pillow put under my head got blanket i slept there, before that out on the deck on hot day this august feeling kinda weak tried to come in house fell couldnt move wife tried to pull me into house soon as she grabbed my arm pain unreal stayed outside or 5 hours before getting enough strength to come in.

Reduced sense of taste

Feeling Cold :i now know how a cat feels laying in the sun it just feels so good

Muscle Weakness

Loss Of Sense Of Touch when i go out side to sit in chairs my ass gets sitting in a damp chair and i dont know till im told

                hands cramping twitching alot more

Numb/burning/tingling extremities

Heavy Legs feels like im carring around from 5-100 pounds weights

Limited Walking Ability

Pains though out my legs

Muscle Cramps

can`t walk

cant stand

lost feeling in gums most face all of body

i can feel when the hair on my arms is touched but not the skin??

so far i have had:

cat scans



fwave took pic of results

all kinds of blood test

lumbar puncture protin was high .89 after treatment 3 months later .69

 muscle biopsy 

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14 Replies

  • Posted

    It sounds more like you are receiving poison. Check your environment, bird droppings, mold, etc. get your blood tested. Good luck
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  • Posted

    ive had all kinds of blood work pee tests no metal poisioning or any poisining  thx though beagagirl

    no bird dropping anywhere i live inn the country

    enviroment well my gf lies with me and shes never got anything

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  • Posted

    Have you been checked for a parasite. I understand they can cause some strange symptoms. I am sorry you are going through this. I hope someone sees this that can help you. Prayers for your recovery. 
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    • Posted

      thx and yes been checked for parasites

      is it just me or am i correct in thinking it might be the h1n1 shot i got on dec 5 cause by dec 15 i got new sneeker /gelinsoles but no help and i just keep going down hill

      ive got noone to talk to about this??

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  • Posted

    get tested for toxoplasmosis IGg IGm get PCR/dna test for same may not show up in blood if you have had it for awhile need MRI with contrast this comes from cats other animals rare meat (deer, dogs, coyotes, more) vegetables not washed well, well water can have it as child can come out later it is a parasite a Physcians may miss it and not t5est or not have enough education if in brain it shows cyst like rings need an expert to look at it it can be missed in muscle biopsy could you post mri get CD you can look at it on computer also need Magneusim copper chromium Selinum boron zinc tested if difficient in these culd be reason for cramping ask your DR. test stool sputum for Toxoplasmosis have sent to reference laboratory in Calif for Toxoplasmosis also many of us have too much iron in our systems it is called hemochromatosis Physicians do not have eonugh education on this according to the CDC test Serum Ferritan, Transferrin, and TIBC do not go by just iron test check this out on CDC site I had to insist my Dr. check for this and I had it how are your eyes they should be tested for Toxoplasmosis also if you have blurred vision pain  I had a friend who had Toxoplasmosis the DRs. did not know what was wrong with her I researched and found Toxoplasmosis you sound like you have a lot of her symptons do not delay Toxoplasmosis is associated with Hemochromatosis or ranther vice a versa They say it is rare only rare because they do not test also it is associated with Schizoprenia in my friends case that is what they said she was but Toxo proved them wrong benzos made her like herself neuropletics made her aggresive  she first had trouble walking lost a lot of weight did not want to eat or drink and she went down, pain in joints went to walking with walker legs feeling heavy more 
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  • Posted

    Also a steriod shot to her foot I believe reactivated Toxoplasmosis, she fit all the clinical aspects had a lot of cats but it only takes one , lived in rural area coyotes on land garden, well water and she also fed feral cats ate her meat rare, she did not have HIv that was the DRs. excuse for not testing her when I asked them to it  they read the test negative when it was a positive and it took taking her to another Hospital where they read it as positive and then she tested 4 times more postive.  Please be tested 
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  • Posted

    I was tested numerous times, biopsied more times than I can count. Finally referred to a lung specialist for a constant and lingering cough. Test showed great lungs but I looked at the cd scan myself, saw the strongoloid tumor. I asked my gp to look, they refused, I asked the lung specialist to look, she did, I was booked with a gastroendochronologist within 2 minutes for the next day. 8" of colon removed but improving each day now.  I had a Strongloid Tumor just below my stomach but it was emitting toxins and larvae all over my body. Had I not suspected a parasite and taken parasite medication on my own, I am sure I would be in the same condition as you. It's your life, don't stop trying to figure out what you have and get help. I bet I went to ten or more doctors, two infectious disease doctors. I know I did at least four tests for parasites.  Then I found it but it still would have been overlooked because the ct scan was only ordered for lungs and report showed I was in great health. Never did they look elsewhere until I pointed it out! 
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    • Posted

      Often the same as yours, times I could not get out of bed. I could not walk without help, break out with sores all over body. Coughing, that would not go away. Fatigue, dizziness, bloating, swollen feet and ankles. Ears ringing. Hallucinations. Thought processing extremely difficult. Sores would not heal. Cramping to the point of thinking I was dying. Legs feeling like I had weight tied to them. . 
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    • Posted

      And sometimes, my lower extremities would get so cold that I thought I could get frostbite! But yes, I stayed oblivious often to emperatures evideneced by people that would comment when riding with me. 
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    • Posted

      One more thing, while blood tests showed in normal ranges, there were some signs that were not getting attention.  I know one doctor told me, it showed I was dehydrated and some of the t things were off. Sorry, not a doctor but I would google my test results and one doc was going to send me to a hematologist before the Strongloid tumor was found. Go to a doctor here that was originally from a third world country, that is what I had to do. 
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