1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

Treatment Suggestions for my worsening condition

Discussion in 'General Treatment' started by BFG, Mar 10, 2014.

  1. BFG

    BFG

    Messages:
    78
    Likes:
    19
    Sacramento, CA
    Hello guys,

    Since my move out of my moldy house 3 weeks ago my condition has become worse. I am

    bedbound again since becoming ill almost two years ago. My symptoms that I had when I first

    became ill such as severe fatigue(can barely stand up), bad peripheral neuropathy, abnormal

    gait, sensory deficits, very bad sleeps and also new symptoms such as very bad brain fog and

    food intolerances.

    I think something is damaging my inner ear because I have this high pitch ringing in my ears

    constatnly and a lot of times my hearing will go out and come back and my abnormal gait.

    My peripheral neuropathy is following the same pattern as before where it started with facial

    parasthesia nad numbness and weakness in my arms, and is now all limbs and my neck. My

    muscles esp my calfs feel like they are constantly in a tremor at rest and I have shooting pains

    and hot and cold feelings in my nerves.

    The peripheral neuropathy seems to be worse in the moring and better at night and wax and wane through the day.

    I am also having anxiety and daily panic attacks and find things too much for me to handle like

    sudden noises and looking at computer screen or even looking outside.

    The peripheral neuropathy is really worrying me because it is worsening everyday.

    Does this sound like a virus causing these symptoms? I tested positive for High EBV titers and semi high HHv6.

    Would it be wise to ask my doc for antivirals such as Famvir or Valtrex? Or am I too sick for these?

    Or could this be due to glutamate overload and or heavy metals?

    My docs don't know waht the cause is. One says its glutamate the other heavy metals. then virus.

    I have some LDN on hand but have not tried it yet. I read about gabapentin(neurontin) for

    peripheral neuropathy, baclofen for sleep anyone have any experience with these?

    I am going to see my doc tomorrow and would like to ask him for something to help my

    worsening condition as I am getting pretty desperate to stop this deteriation of my nervous system.

    Any recommendations? thanks.
    Last edited: Mar 10, 2014
    Oredogg likes this.
  2. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,200
    Likes:
    1,393
    Left Coast
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,240
    USA
    One thing I would ask your doctor about is orthostatic intolerance, especially low blood volume which can be improved by medication such as Florinef. Other kinds of OI are known in ME/CFS, but low blood volume is quite common and relatively simple to treat, so more docs are willing to try it than are willing to try other OI treatments.

    I suggest this primarily because some of your symptoms, including fatigue and brain fog, could be from OI and a move is likely to aggravated OI if you have it. Other neuro symptoms probably aren't OI-related.

    Has your doctor seen the ME/CFS Primer for Clinical Practitioners? It's not great in the infections dept, imo, but helpful in a lot of other areas. It might give your doc some ideas for areas to investigate.

    I'd also want to make sure that the doctor is properly investigating other reasons for the neurological problems you describe. It's far too easy to blame everything on ME, and neglect to search for other legitimate causes of some symptoms.

    Inflammation may be another factor in some of your symptoms. You might want to ask your doc whether it would be worthwhile trying some anti-inflammatories to see if they help. It sounds like you're seeing at least one naturopath. S/he might know something about anti-inflammatory supplements, like fish oil, that might help.
    heapsreal likes this.
  4. BFG

    BFG

    Messages:
    78
    Likes:
    19
    Sacramento, CA
    Thanks for the suggestion have some on the way.
    Thank you for the primer, and i do agree i need to find the cause, but its usually tough geting docs to give you a full workup even with serious symptoms.
    SOC likes this.

See more popular forum discussions.

Share This Page