Muscle weakness,pain-spontaneous...please read I need help with a dx

Discussion in 'General Health & Wellness' started by mxpxchic1, May 16, 2011.

  1. mxpxchic1

    mxpxchic1 New Member

    I just found this website/board and I am in desperate need of some opinions and help with a dx. I am seeing a bunch of doctors but no one can pinpoint what exactly is going on. This will be long but please read and bare with me.
    Jan 24 I woke up and couldn't move. DH helped me out of bed and him touching my body felt like i was covered in blisters and was extremely painful so much that i fell to the floor. He helped me up as i was beyond weak and could barely move any part of my body and rushed me to the ER. there my b/p dropped to 60/30 and i was in and out of consciousness. My CPK (heart muscle levels) were 60,000 instead of the normal 200 which meant my muscles were deteriorating at a rapid pace. i was put on abx, o2, prednisone, IV fluids and pain meds. They did a million tests including CT and MRI of my head (for the abnormal weakness/partial paralysis) and NO MS was seen, an MRI of my thigh to look for lesions (negative), pulmonary testing for embolisms (normal/negative), and after a bunch of blood tests (all normal) and 7 days they felt i had rhabdomyolysis (muscle deterioration) and d/c me. When i was d/c i was partially paralyzed and weak in my legs, arms, had gained 40 lbs from all the fluid, had pneumonia from all the fluid, and was very fatigued. The doctors hoped this was just a fluke thing.

    Over the next 4-5 weeks my fatigue got better and i started to feel more like myself, just weaker than i was before. 10 wks later on April 7 the EXACT same thing happened! I was fine going to sleep and woke up and this time it was much worse. I called my DH and he rushed home to take me to the ER. Upon arrival again my B/p dropped and i was unconscious. I dont remember much about this stay. They again hooked me up to abx, o2, fluid, pain meds and started tests. They repeated the same tests as before and nothing had changed. I continued to worsen this time as it affected my brain too (i couldnt as much as articulate a sentence) and on night 2 i was admitted to the ICU with a central arterial line into my heart placed as well as an arterial line in my neck to monitor my b/p internally (which blew and they placed in my left arm). I was here 18 hrs and then taken back to the floor. I was pretty out of it still and ran in and out of consciousness. They did a muscle biopsy on my right thigh (which im still healing from) which was neg. Again everything looked "normal" I was d/c on day 7 and again it took 4-5 weeks to fully start to recover. Now i feel ok but im nervous every night that the next day this will happen. They told DH both times i wouldnt make it out of the hospital. Im afraid a 3rd episode will kill me. Anyone have anything like this? Lyme disease was suggested and i go today for the bloodwork but other than that there are NO LEADS by any dr i am seeing. Im hoping by some small chance of fate someone will read this and can relate.
  2. Nanie46

    Nanie46 Moderator


    Wow, sorry to hear that you have suffered through all of that.

    It is possible that you have tick borne infections such as lyme disease.

    THIS IS VERY IMPORTANT: Lyme disease should NEVER be ruled out with just a negative lyme test result. I cannot emphasize that enough, because this is the mistake that 99% of Dr's make.

    ALSO VERY IMPORTANT: Lyme testing is very INNACURATE missing most cases of Lyme disease....yet 99% of Dr's rely soley on this inaccurate test to say that you do not have lyme.

    The IDSA standard is to do an ELISA, which is a screening test that is not sensitive enough to pick up most cases of Lyme.

    Usually a Dr will only order a western blot if the ELISA is positive, missing most cases.

    Even if the Dr ordered a western blot IgG and IgM for Lyme, regular labs only test for 3 IgM bands, leaving out the very lyme specific ones, which makes no sense and missed most cases of Lyme.

    Regular labs also only include one strain of Borrelia burgdorferi (lyme) in their testing methods which misses alot of lyme also.

    You should INSIST that the Dr order a western blot IgG and IgM for Lyme, test #188 and #189, from Igenex lab in CA.

    This test must be prepaid with credit card or check (was $200 last time I checked), unless you have Medicare, which they accept. You will get a receipt that you can send in to your insurance to see if they'll pay.

    Call igenex (# on website) for a free test kit with prepaid fedex label.

    Have blood drawn at a lab that will prepare it and send it out via fedex on a Mon or Tues morning so it can arrive via fedex at Igenex lab before the weekend.

    Results take about 2 weeks.

    When your Dr gets the lab results, GET A COPY right away.

    Then post your results on's Medical Questions Board.

    It is common for Lyme patients to have an officially CDC negative western blot, but important clues can be found by examining the individual band results.

    Igenex tests for 10 IgM bands, not just 3. Igenex includes lyme specific bands that can help with diagnosis.

    You have nothing to lose here since the Dr's have essentially no clue what is going on even though you have been critically ill twice. Use that reason with your Dr when he tells you that you do not need a western blot from Igenex...tell him that you almost died twice and you insist.

    NOW, THIS IS ALSO VERY IMPORTANT: Lyme is a clinical diagnosis...that means that it should be made based on medical history, symptoms, exam and labs results....not just labs....nor should it be ruled out by just a (negative) lab test....and that is where you will need to be your best advocate.

    Here is a very important paper written by Dr Burascanno, a lyme expert:

    On page 7 of that paper, read the info under "Diagnosing Later Disease". He talks about the inaccuracy of testing. You may need to show this paper to your Dr.

    Here is an article that tells why a person may have a negative lyme test even if they have lyme:

    Since your Dr's cannot diagnose you and you almost died twice, you really should see a Lyme Literate MD (LLMD) who follows ILADS guidelines.

    You can find a LLMD by going to on flash discussion.....sign up for on the Seeking a Doctor on Post a New Topic and create a post asking for a LLMD in your state in the subject line.

    Then click on either Forum Home or Questions and Discussions...this will take you back to the list of lyme boards Medical Questions, Activism, Seeking a Doctor, General Support, etc.

    Click on the Medical Questions board and then click on Post a New Topic.

    Create a post just like you did here describing your could even copy and paste from this site.

    Helpful hints: Be specific with you subject line to get lots of" Help! Need a Diagnosis, almost died twice, CPK up, weakness/paralysis, low BP etc", if all that will fit in the subject line.

    Also important for lymenet posts: Make short paragraphs so that all of us with neurological symptoms can easily read the text.

    Just double space after every 1-2 sentences, like I am doing. Otherwise people will skip over your post because they can't read long blocks of text.

    There are tons of very intelligent people on's Medical Questions board and it is a very active board. You will have a good chance of getting replies that may help you on that board.

    Here's some more lyme disease info:

    I sure hope you get a correct diagnosis and treatment.

    Hope to see you on where I am Dekrator48.

    [This Message was Edited on 05/16/2011]
  3. Adl123

    Adl123 New Member

    I'm no doctor, but I do have an idea. I had a friend once who had similar symptoms. It turned out that she had Gianne Barre Syndrom. I don't remember her mentioning blisters, but most of the symptoms you mentioned sound famliar. You might want to ask your doctor about this.
    I'm very sorry you are going through this, and will think of you. Terry
  4. Janalynn

    Janalynn New Member

    I am really sorry you are going through this. It must be frightening.

    I looked up Guillain-Barre Syndrome. Very interesting. I hope that you can get some answers. I certainly wouldn't give up until you do!

    Please keep up posted - please!

    Will be thinking of you!