The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Treatment options-advice needed!!!

Discussion in 'General Treatment' started by Katyw, Jul 8, 2015.

  1. Katyw

    Katyw

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    Hi Everyone,

    I'm at a loss on what to do next, please could I get some advice from you knowledgable lot! :)

    I have moderate/severe ME and POTS and have had this for two years. I have managed to go from being bed bound to house bound in this time due to intensive resting and taking various medications (ivabradine & aciclovir) and supplements (Dr Myhill's protocol).
    I'm not sure which drugs specifically worked (apart from ivabradine) but I'm staying on these as something has helped :) I'm at the stage now where I'm no longer making improvements and looking to gain more functionality.

    The main symptoms I am unable to manage are: PEM, swollen and painful thyroid with hypothyroid symptoms, face pain, arm pain, viral/poisoned feeling, swollen armpits, severe acne on back and chest.

    Since being ill I have constantly had mildly/moderately raised blood work showing chronic inflammation:
    Lymphocytes
    White blood cells
    CRP
    ESR
    Plasma viscosity

    Further testing at immunology showed these results (no help was given and discharged)

    Increased:
    Cd4:cd8
    cD3 absolute
    Cd3/4 absolute
    complement C3
    complement C4

    Low
    CD3-/CD56=16 percentage 6.0 (7-31)

    Thyroid - T4 T3 ratio low and reverse t3 low (not optimum but have been told that I wouldn't benefit from medication as these results are usually due to inflammation and need to sort out adrenals first

    NB: I have paid for testing and ruled out a lot of other chronic illnesses (lupus, MS, lyme, auto immune conditions)

    I have some treatment options but I don't have a doctor who can look at the whole picture to advise where to go next so I'm relying on my own instinct and forums. Here are my options:

    Dr Myhill (can be monitored)
    Valcyte
    (Concerned whether I need this as unsure if it's a reactivating virus on not, been tested negative for EBV. Maybe my high inflammatory markers warrant it) Also there's the cost factor to consider as I could afford it at a push but only if it's the right path for me.

    NHS cardiologist:
    Fludrocortisone
    Garabetin
    (Concerned that pain meds would mask the real root cause and not help long term. Fludrocortisone may not help ME symptoms and could affect adrenals/thyroid negatively. Could however help with lowering inflammation) Completely monitored and free.

    Online GP: (no monitoring or advice)
    Low Dose Naltrexone (LDN)
    (Heard this can be tolerated well, can regulate the immune system but I wouldn't have anyone monitoring me as no doctor apart from online will prescribe.

    Buy online: Imunovir (Don't know much about this drug, would not be monitored and have no help)

    I am based in the UK so don't have any other options apart from above.

    Thank you in advance

    K
     
    Last edited: Jul 8, 2015
  2. Katyw

    Katyw

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    Anyone???
     
  3. xrunner

    xrunner Senior Member

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    Hi @Katyw
    of the options you have mentioned I'd choose Dr M. simply because the others never had anything helpful to offer me personally. But I'd want to see and Endocrinologist for an opinion on thyroid
    I'd ask Dr M testing for chronic bacterial infections to rule out Lyme, micoplasmas, cpn to name a few and also testing for CD57 can show immunosuppression due to chronic infections.
    In addition would want to rule out mercury/heavy metals. Info on how to effectively test for this can be found here
    https://groups.yahoo.com/neo/groups/frequent-dose-chelation/info
    I'd also consider a trial of the Simplified Methylation protocol which may help with the poisoned feeling.
    Best wishes
     
    AndyPandy and justy like this.
  4. Katyw

    Katyw

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    Hi @xrunner

    Thank you very much for your reply. I appreciate it.

    Would you say it's important to get the vital antibody tests for EBV and others before starting valcyte?
    Dr M would prefer this and I would too but it's expensive and I have limited funds. She would be happy to trial me on some to see if it helps. My concern is that if I don't have a high viral titre then is this treatment pointless?

    I've had the full testing for lyme and ruled out cpn and other bacterial infections. I will look into cd57 testing as well. I am limited in the UK with options for good doctors and testing but I am seeing an endocrinologist soon. I was discharged by a thyroid specialist as my TSH wasn't ocer 10 which is ludicrous.

    I have had all of my mecury fillings out and chelation.

    I haven't thought about a trial of the methylation protocol but it does make sense. One thing I have always thought strange is my high levels of b12 and folate so I could have methylation issues.

    Thank you again
    K xx
     
  5. SOC

    SOC

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    There is currently some thinking that the greatest benefit of Valcyte in ME/CFS is it's anti-microglial effects. If that is true, then taking Valcyte might not be pointless even if you don't have HHV6 or CMV reactivated. However, Valcyte is a very serious medication with nasty potential side effects, so careful monitoring is necessary. LDN is likely to be a better way to deal with microglial issues if you don't have HHV6 or CMV reactivations. I'd ask Dr Myhill about that.
     
  6. Katyw

    Katyw

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    Hi @SOC
    Thank you for your reply- That was my biggest worry as I have heard valcyte can have nasty affects and I am mod/severe sufferer so don't want to relapse too much. One of the biggest queries I have and don't understand is which one will get to the root cause. For example, if I do have high vital titres, would valcyte help cure the cause of this or just improve symptoms? Would you have to be on the antiviral for long periods of time? My thinking with LDN is that it may help managing the symptoms but it does deal with the root cause and you would have to be on it for life.
    I want to take a medication which can deal with the root cause. Thanks
     
  7. SOC

    SOC

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    It would be easier to get a medication to deal with the root cause if we knew what the root cause actually was. ;) Since we don't know the root cause of ME/CFS, pretty much any treatment is a symptomatic treatment. There is no known cure for ME/CFS. The best we can do is treat things we know are wrong and hope that managing enough of them gives us better quality of life.

    I was severe (mostly bedbound) when I started Valcyte. I had a bad stretch with it, but felt much better as soon as it was over. I was still housebound, though. I'd do it again in a flash. For me, it was well worth it. Adding a bunch of other treatments, including LDN, has slowly moved me from bedbound to working a relatively easy job from home, and able to take care of most of my ADLs including shopping without a wheelchair/cart. I am NOT cured, I'm just much improved.

    I have been on Valcyte up to 24 months and I'm currently more than a year into my second round of Valcyte after 2 years off. It seems to keep my HHV6 under control, but does not push it into permanent latency (for me). It's not perfect, but I'll take it over having HHV6 run uncontrolled in my body. The bottom line is that there is no cure (yet) so we do the best we can with whatever we can get.
     
  8. xrunner

    xrunner Senior Member

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    I never tried it so I don't have a particular opinion. If the Dr is willing to have a trial may be why not?

    Mercury, regardless of chelation there's only one way to find out if there's any left in body tissues which may affect your immunity. That is a trial of ALA every three hours for a few days. It's cheap but a very helpful test.
    CD57 I found it very helpful because it can show immune suppression regardless of test results for specific pathogens.
    Both tests can give you hard facts to guide your decisions in respect of treatment options.
     
  9. trickthefox

    trickthefox Senior Member

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    Brighton
    I'd say theres no harm in trying the LDN, it seems to be helping me! and it isnt as costly as the other things you've mentioned, from what i gather it's not a cure, but can drastically improve quality of life for some people
     
    Hutan likes this.

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