Update & Concerns

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Apr 22, 2010.

  1. Elisa

    Elisa Member

    Hi All,

    I not sure where to turn or what to do at this point.

    As many of you know, I had a low grade fever for about three years - which now comes on maybe once a week - which is good, I think.

    About a year ago I had a root canal and within hours I couldn't swallow - I figured it was inflammation and would go away in time - weeks passed then months - with some improvement. Then about a month or two ago it came back with a vengence and now I can barely swallow liquids and have lost over 10 lbs and am worried.

    As usual for me, I cant find any help medically and in many ways have given up trying. When I do see a doctor I am belittled.

    I am not near any CFS doctors.

    I am very isolated - never see people - except out my window. So I guess that doesn't help.

    Anyway, I am wondering if anyone's CFS/FM/ME got threatening in this way.

    This morning when I awoke I had numbness in both arms and my chest. Needless to say - I am beside myself.

    I have had this DD for over 13 years - and the severity of the symptoms is so disturbing to me. I guess deep inside I dont understand WHY this is happening and feel like when something happens there is no one to go to for help.

    I have bad breathing problems too - so I wonder if they are all connected.

    Back to the swallowing, because I think if I don't figure this out soon - it will topple me. Sometimes it seems food related - sometimes my throat is so dry (yes, Sjorgrens has been suggested yrs ago) and rough I couldn't posssibly swallow anything and other times by the third swallow my muscles no longer work.

    Oh, the swallowing gets worse as the day goes on...don't know if that is a clue or not.

    Here are the things I am trying - but nothing seems to help:

    DLG lozenges (in case it's reflux or LPR)
    digestive enzymes with everything
    head up in bed - 6 inches
    Tons of probiotics (was on antibiotics for 4 yrs straight - stopped in Nov '09)

    Just have no idea what to do...

    Oh, had TSH of .01 and nodules that are hypoechoic in thyroid - no answers there either. Why in the world do docs do blood work -find abnormal results and do nothing - what's the point?

    So in summary - I am examining the possibiliy of throat infection, reflux (GERD or LPR), thyroid-related, ANA related (mine is 1:320 or higher), always Lyme, food allergies etc. the list goes on.

    Sometimes I wonder if it is deep deep grief - I cry so much.

    Anyway, I sure hope someone out there has some experience with this that they can share - I would be so very grateful.

    God Bless,


    [This Message was Edited on 04/22/2010]
  2. Nanie46

    Nanie46 Moderator

    Sure sounds like a mixture of tick-borne infections, expecially Lyme and Babesia.

    Go to pages 26-27 of the following paper....after reading that, read pages 22-25 also and the symptom list on pages 9-11.

    Babesia cycles weekly. Breathing problems are associated with Babesia and lyme.

    People with lyme sometimes develop swallowing difficulty. Lyme is a complex bacterial spirochete that can infect every organ and system. It greatly attacks the nervous system. It very often causes numbness and digestive problems. It can keep getting worse over time.

    I think your very best move would be to do what ever it takes to get to a Lyme literate MD before you have permanent damage that cannot be reversed.

    Your life could depend on it.

  3. Misfit101

    Misfit101 New Member

    That I had an answer for you but I dont. I just wanted to let you know that I read your post and Im so very sorry youre going through this. Lots of smart people here, I hope someone has an idea or suggestion. Ill be thinking about you. Rebecca
  4. Elisa

    Elisa Member

    Thank you Nanie and Rebecca.

    I am so grateful for your kind words...wish you knew how much they mean to me!!

    God Bless,

  5. debilyn

    debilyn New Member

    I don't know whether this has anything to do with what you're experiencing, but I'll tell the story anyway.

    My husband had a terrible time swallowing when eating. He said his throat feels like it's swollen and nothing can go down it. I've watched him choke on food and have to rush to the bathroom to basically throw up what he was trying to swallow.

    His doctor told him it most likely is related to acid reflux or GERD and told him to try Prilosec daily. Since he's been taking the Prilosec he hasn't had the throat swelling or the problem swallowing food. It stopped as soon as he started taking the medicine.

    It's amazing to me because when he describes the swollen feeling and when I've seen him start to choke on food and being unable to swallow, it seemed like it had to be some obstruction or something. I never would have thought that it could be treated with Prilosec.

    Good luck and prayers to God that you feel better really, really soon.


    [This Message was Edited on 04/23/2010]