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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Confused Re: Dr, Tx Options & Realistic Expectations

Discussion in 'ME/CFS Doctors' started by sparklehoof, Feb 27, 2014.

  1. Hi,

    I'm new to PR and appreciate what a great community is here.

    Like most everyone one the site, I have ME, would love to find some relief and am trying to figure out how.
    I live in RI with my parents and I'm looking for an ME specialist- I have Medicare/Medicaid and became sick as a teen 15 yrs ago. I am about a '2' on the PR activity scale, though I was a '3' when I've lived in NC, but couldn't afford to stay.

    I recently went to see Dr. Enlander, as he seems to be the closest ME specialist.

    I'm interested in getting another opinion to see if I may be eligible to try something that I haven't tried such as the Maf category of treatments or anti-virals. At this point, I haven't found a treatment for pain, sleep, vertigo, anxiety, digestion or cognitive symptoms. It's been over a week since I've been out of bed for more than a few minutes at a time.

    I'd like to have hope that I could improve, but my mom questions that if because nothing has helped in the past, that nothing will ever help. She's concerned that if she helps me with treatment costs that we'll just keep spending money with few or no results. Her concern is valid and I'm wondering if at this point, my focus should be accepting being bed/house bound rather than trying to improve my quality of life. I'm reluctant to accept a life in bed if there is a chance that I don't have to.

    I'd suspect that it's unrealistic for me to believe that I'll make a full recovery, but I'm wondering if it's realistic to think that I may be able to progress from a '2' to a '3' or '4' on the activity scale.

    I've contacted Dr. Montoya, Dr. Peterson, The Institute for Neuro-Immune Medicine, Miami and am trying to get on the wait lists, though my understanding is that it may take several years. I've looked into research studies such as Ampligen and the Ritiximab study in Norway, but I don't qualify due to money or citizenship.
    If you have a doctor and or treatment that you believe in, I'm willing to use whatever savings I have and to travel anywhere I can for treatment. Thanks so much.
  2. SOC

    SOC Senior Member

    I'm a little surprised that Dr Enlander didn't provide you any treatments that improved your condition. He does do some of the more progressive treatments. There's also a fairly common set of treatments to try that could improve sleep, pain and OI. Did he not try them with you, or did they not work?

    Can you link the PR activity scale? I've been trying to find it recently with no success. Probably another darned cognitive dysfunction issue. ;)

    I don't think it's unrealistic to expect to progress from a 2 to a 3 or 4 with treatment from a top ME/CFS doc. But if you didn't get even that from Dr Enlander, I'm not sure what to think.

    I was bedbound when I started treatment with top ME/CFS docs. Now I'm largely housebound, but that's a huge improvement in quality of life in my opinion.

    Progress doesn't happen quickly with this illness, though. Most of the better treatments seem to take at least 6 months to see an effect and possibly years to get the best effect.
    Last edited: Feb 27, 2014
    justy likes this.
  3. Sushi

    Sushi Moderation Resource Albuquerque


    I certainly understand your Mom's and your concern about paying into a bottomless pot and not getting improvement. That is more likely to happen if you are seeing a doc who is not one of the top ME/CFS specialists. Most of those specialists are able to bring varying levels of improvement to at least half (often more) of their patients.

    But it does take time...and money--you just don't want to waste your $$$. I see one of the "top docs" and have had significant improvement even though I have been sick a long time.

    Dr. Enlander does give some of his patients either injected or yogurt-type GcMAF. (injected GcMAF helps me a lot) He also prescribes Ampligen to some patients.

    You might find that signing into chat and starting a conversation there would give you some more ideas.

    Welcome to the forum and best wishes,
    Alea Ishikawa and justy like this.
  4. *GG*

    *GG* senior member

    Concord, NH
    I would think you could find a local Dr to help you find the right sleep med, lots of us take anti-depressants, that help with sleep initiation and continuance. Like Trazadone, Doxepin and Remeron. I was on Trazadone for a while, quit working, Doxepin did not work for me, but works for others, currently on Remeron for years now, and it has been the best for me.


    PS I travel over 1 hour about every 3 months (100 miles to see my Doc in MA), he has helped me a lot!
  5. xchocoholic

    xchocoholic Senior Member


    Sorry to hear you've been dealing with this from such a young age.

    I'm not up on what your doctor is recommending but wanted to suggest you may want to see an integrative or functional doctor in your area. This kind of doctor will look for root causes for your symotoms.

    Many of us have benefitted from changing our diets to eliminate food intolerances.
    Mostly gluten, dairy, soy, corn and chemicals.

    Most of my symptoms vanished within the first year but I still have orthostatic intolerance so I'm still a 3. I feel completely healthy supine tho. A lot of good that's doing me. ; )

    Tc .. x
    *GG* likes this.
  6. Thanks xchocoholic. I'm so glad to hear that your symptoms improved so much in the first year, that's wonderful! Congratulations!

    I started using herbal remedies, diets, homeopathy, acupuncture, muscle testing, chiropractic, PT etc., but unfortunately it doesn't seem to help. (Though I wish it did:) I've been tested for food allergies and tried many diets with a variety of doctors over the years. Now, I loosely follow the GAPS diet and that seems to be a good fit for me.

    I had a good GP in NC before I moved and he was so dedicated and caring-- he did everything he could and was supportive even when he didn't know how to help or who to send me to. The doctor that I have now is also very good, she doesn't seem many pt.s with ME/CFS and focuses on allopathic medicine, but she's still as supportive as she can be.

    Thanks again,
    xchocoholic likes this.
  7. Thank you. If possible, can you post or send a private message with your doctor's name? I looked for ME specialists in MA and couldn't find any. Thank you
  8. Thank you so much for your reply.

    Here is the PR Activity Scale:
    0 - Bedridden constantly 1 - Mostly bedridden 2 - leave house once a week, concentrate 1/hour a day 3 - leave house several times/week, two hours work/activity at home a day 4 - 3 to 4 hours of work/activity a day 5 - four to five hours/activity a day 6 - six to seven hours/activity a day 7 - able to work full-time but with difficulty 8 - near-normal activity level but still symptomatic 9 - normal activity level, mild symptoms 10- fully recovered

    I've had two visits with Dr. E and he prescribed ImmunoProp only which is similar to three other protocols that I've tried between 2001 and now. I went to him because I was interested in treatments such as GcMaf, Ampligen, and anti-virals etc. I was hoping they may help because my tests for retroviruses were very positive. Perhaps I need to be more patient.

    I understand that improvement can come slowly and in a non linear progression. I've been trying treatments for 15 years giving them months or years in hopes that improvement will come, but so far it hasn't. My goal is to be patient but also to use my time efficiently while staying informed:) My hope is that I'll find a way to feel more confident that this protocol is a good fit for me based on my history, tests results, and symptoms.

    I give you a lot of credit, as it sounds like you aren't able to leave the house at all. I'm so glad to know that you're not completely bed-bound anymore. Thank you again
  9. SOC

    SOC Senior Member

    Thanks for that. I wish I knew what was meant by "work/activity at home". I can't do even an hour of housework at one time, and can't do 2 hours over the course of a day. But I can drive to another home and tutor for 3 hours as long as I can sit most of the time. So I count myself as a "4" or "5" these days, but maybe that's overly optimistic...? I couldn't work a normal part-time job reliably. In any case, it's a lot better than the "1" on this scale that I was 4 years ago.

    So you must have immune dysfunction...? I suppose he was thinking improving your immune system would help. No positive viral tests that would get you antivirals?

    Did you ask him for GcMaf? He might give it to you if he knew you wanted to try it.
    Smart! :)

    Ah yes, the holy Grail of ME/CFS. :)

    I get out most days to tutor. :D No shopping or walking more than about 100 ft, but at least I'm not completely cooped up at home. Much better than being stuck in bed all day every day.

    I'm not sure you're going to get more from one of the other docs you listed than you are from Enlander. If you haven't already, I'd ask him outright about the treatments you'd like to get and see what he says.
    Last edited: Mar 1, 2014
    justy likes this.
  10. xchocoholic

    xchocoholic Senior Member

    I'm a paleo diet fan. It seems like a better fit for healing the body since our bodies recognize whole foods. GAPS doesn't appear to address common factors in leaky gut like dairy intolerance or oalates.

    I feel best when avoiding gluten, dairy, soy, corn, grains or legumes. I just started being able to eat more gf grains and legumes after about 5 years mostly paleo (a total of 8 years known food intolerance free), but these made me feel weak until recently. I limit these still. I have to eat meat for muscle strength.

    Fwiw, I just started with dietary interventions because my gut was too sensitive for supplements. It appeared that I had full blown celiac disease by 2005 since nothing stayed in. Maybe avoiding supplements helped since we really never know what's in these. Reports of toxins found in supplements are on the web.

    Sleep was a biggie for me too. I used a combo of melatonin, 5htp and either theanine or klonipin for 6? Years. I just stopped the melatonin and 5htp recently and can tell a big difference when I take these now. They make me too drowsy during the day if I take them for more than 2-3 days in a row. But I enjoy feeling completely refreshed after taking these for just 1 or 2 days in a row. :) I'm working on how to use these again.

    Tc ... x
    Last edited: Mar 1, 2014

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