Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

How do I treat what I have?

Discussion in 'General Treatment' started by Lucy1996, Jul 3, 2017.

  1. Lucy1996

    Lucy1996

    Messages:
    37
    Likes:
    26
    Hi,

    I have been diagnosed with CFS/PVFS.

    I don't know what I can do to help:

    I have still a brain fog/headache every minute of everyday over part over the back of my head but also the front and just extreme mental fatigue. Also pains at the top of my neck like my head is really heavy. And pain behind my temples and ringing in my ears. I have the crimson crescents and sore throat every single day of my life for two years now. I also have muscle twitches most days in my face and body.

    I have been diagnosed as having shingles and glandular fever in the months proceeding being properly ill with all this.

    I don't know what viruses are causing my symptoms - I've tested only positive for Epstein Barr but I'm presuming something else is causing it and the doctors tests aren't sensitive enough to detect presence of maybe the cocksakie b virus? I don't know what I am ever going to do to recover.... I can't go to the doctors and ask for anti virals because they won't give them to me as I'm in the UK. In fact the doctors don't help at all, the only thing they say is there's nothing we can do for you.

    What can I do to rid myself of this forever ? I don't want to spend the rest of my life exhausted and out of it.

    I'm sorry as I know I've posted before but I don't really know where to start with the generic treatments as I don't know what is actually causing what I have and have had. The other thing I find frustrating is most people who've had glandular fever never had any problems with brain fog, struggling focusing and reading and feeling out of it yet I have. It leads me to question whether I've ever really gotten to the bottom of what's wrong.

    Also I tested negative for Lyme disease on the standard test. Tested negative for almost everything.

    I'm 21.

    Thanks.
     
    Last edited: Jul 3, 2017
  2. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,220
    Cincinnati, OH, USA
    The UK is tough for treatment. You might need to pay for a private doctor or go out of the UK. Sarah Myhill and Kenny De Meirlier are two ME doctors UK people have used. (It looks like Myhill is not taking on new patients.)

    You might have the best luck with a functional medicine doctor. There are a number them in the UK.
    https://ifm.org/find-a-practitioner/?location=&country=GB&rad=150&pos=

    Hopefully some other UK people will reply with some suggestions.
     
  3. JaimeS

    JaimeS Senior Member

    Messages:
    3,162
    Likes:
    11,604
    Mid-Ohio Valley, United States
    justy and Lucy1996 like this.
  4. taniaaust1

    taniaaust1

    Messages:
    11,876
    Likes:
    12,623
    Sth Australia
    I second what caledonia said, if u have a good ME/CFS specialist working with u that may really help. With brain fog and being fairly new to this illness, you'll just get lost with it all and randomly trialing supplements takes years and will cost u a ton of money.(I think I tried over 30-40 different things before I found the first thing which helped me a little, it was a huge money waste just to randomly trial what other ME/CFS people were trialing without tests to back anything up).

    Ive only had luck with things when tests have indicated it may be useful for my case
     
    Lucy1996 likes this.
  5. Lucy1996

    Lucy1996

    Messages:
    37
    Likes:
    26
    I think my problem is I have no idea how to get a proper ME/CFS specialist, in the UK they won't give you any help whatsoever. Just pace and eat healthy ... how helpful.

    How do I go about contacting a specialist? X
     
  6. Mary

    Mary Senior Member

    Messages:
    2,647
    Likes:
    5,881
    Southern California
    Look at @caledonia's post above - she provides a link to find a functional medicine doctor. Functional medicine doctors in general are the ones who are most likely to be able to help you.

    What helped me the most, especially in the early days, was muscle testing done by a chiropractor. Yes, it probably sounds crazy, but he was the first one who helped me. He found my weak adrenals and several other things and gave me nutritional supplements which helped a lot. This was before I knew about functional medicine. I had been sick for some 7 years, with no help from regular doctors, and then stumbled across the chiropractor. I've used muscle testing ever since, done by various chiropractors and I learned how to do it myself, and usually use a combination of both my own testing and the chiropractor. If you want to find someone in the UK who does this, google applied kinesiology and you'll find some links to help you find a practitioner.

    Muscle testing has been invaluable in helping me to find various supplements and proper doses which have helped me. I would be lost without.
     
    Lucy1996 likes this.
  7. adelheid55

    adelheid55 Senior Member

    Messages:
    381
    Likes:
    582
    I would recommend DR. de Meirleir in Brussels if there is nobody who can treat you in the UK.
     
  8. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    865
    Likes:
    4,429
    S W England
    Be very careful about starting on very expensive treatments or private Dr visits with no guarantee of improvement or cure. Unless you have unlimited funds you have to be careful about what you choose to do because as someone else pointed out, you might have to try a load of different approaches before anything sticks.

    As much as you can get help managing symptoms and pacing, there are no treatments that can definately cure you( otherwise there would not be thousands of members on PR)
     
    Last edited: Jul 3, 2017
  9. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,129
    Likes:
    4,147
    Hi @Lucy1996

    You could start your journey by purchasing supplements that don't require an Rx. If you don't feel any improvement after a few weeks then stop taking it. It you feel an improvement then keep taking it and start the next one on your list. Here are my suggestions and order:

    1) Electrolyte powder than can be mixed with water. One glass of water with powder upon rising, on at lunch, one at dinner, one before sleep
    (My preference is Vega Sport Electrolyte Hydrator)
    2) N-Acetyl-L-Cysteine (NAC)
    (My preference is Jarrow)
    3) Nicotinamide Riboside (NAD)
    (My preference is Jarrow)
    4) Activated Quercitin
    (My preference is Source Naturals)
    5) Vitamin B12 (weekly self injections of Cyanocobalamin)
    (https://www.buy-otc.com/vitamin-b12-injection/)

    At this point is you have gone thru this list, and have noticed symptom improvements, and want to further your journey, then it's time to find a competent doctor. If you have a telephone consult with a doctor that can NOT tell you why you favorably responded to the treatments you found to be working for you, then hang up the phone and search for someone else. Don't waste your time with incompetent doctors, most of them are clueless, so be emotionally prepared that restoring your health is a long term comittment.

    Don't get too hung up on the doomsday folks on this site. The sky is not falling. There is help and hope.

    Best of Luck!!!

    GD
     
    Lucy1996 and sharks like this.
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,211
    Likes:
    31,647
    Maybe the NHS doctors you have seen are just being honest. I try to keep tabs on all the research into ME/CFS and as far as I know they are right - there are no effective treatments designed to cure the condition. We have no good evidence for anti-vitals being any use. If you search for 'ME specialists' you are almost certain to find charlatans ready to take money for phoney treatments. I personally have no clear idea what the cause of continuing symptoms in ME might be but, as an immunologist, it seems very unlikely to be due to persistent virus infection. The pattern of symptoms does not fit. And the researchers who have looked for viruses have not found anything.
     
  11. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,129
    Likes:
    4,147
    I agree regarding your comments about the use of anti-virals and lack of evidence to prove a persistent virus infection. I also agree we have doctors who advertise they are ME specialists, but they are really charlatans; I feel these folks have their own agenda and motives.

    I don't think anyone has found a one time treatment to permanently cure ME.
     
  12. Mij

    Mij Senior Member

    Messages:
    2,269
    Likes:
    5,038
    I was diagnosed by an M.E specialist in 1992 with CFS/PVFS and he didn't recommend anything. He did tell me to 'do nothing' even when I started feeling better. I think the best advice right now is to not overdo and hope it will pass.
     
  13. Tammy

    Tammy Senior Member

    Messages:
    1,056
    Likes:
    1,371
    New Mexico
    I've been on an anti-EBV protocol for 2 yrs and feel the best I have in 20 yrs.
     
    Lucy1996 and adelheid55 like this.
  14. caledonia

    caledonia

    Messages:
    4,203
    Likes:
    3,220
    Cincinnati, OH, USA
    Maybe there is no sure fired cure, but there are certainly things which can help symptoms so you're more comfortable.

    The reason I suggested a functional medicine doctor is that they're a combination of standard medicine and naturopathic medicine. So you get the best of both worlds. They're trained to find the root of the problem, not just mask it with drugs. Although if you get an MD they can prescribe drugs too, if that's necessary.

    Common things you could have are thyroid and/or adrenal issues, gut infections such as candida, essential fatty acid deficiency, electrolyte deficiencies, etc.

    As you find and treat those, you will start to feel a lot better.
     
    adelheid55 and Lucy1996 like this.
  15. Timaca

    Timaca Senior Member

    Messages:
    637
    Likes:
    298
    I am curious what you've done for EBV.....
     
    frederic83 and Lucy1996 like this.
  16. adelheid55

    adelheid55 Senior Member

    Messages:
    381
    Likes:
    582
    I have chronic EBV and am also interested.
     
    Lucy1996 likes this.
  17. Tammy

    Tammy Senior Member

    Messages:
    1,056
    Likes:
    1,371
    New Mexico
    @Timaca @adelheid55 ...........I will post a thread in the future that will go into more detail.............but basically I have been taking herbal anti-virals , take B12 (both methyl and adeno) to help methylation (although there is much more to methylation than just B12, folate), and am also taking other supplements for general immune support and on a certain diet geared to clean up the liver (helps methylation issues) and starve virus/bacteria and rid any heavy metals I may have.

    The herbal anti-virals kicked my butt in the beginning...............but now I feel like I am finally over the hump of the worst.............and definitely feel SO MUCH BETTER. I learned that this would be a long journey with the protocol..........and there were times when I almost quit.................but so glad I didn't because I am feeling like I belong to the land of the living again rather land of the dead. I was about to give up on the thought of regaining any resemblance of health after 20 yrs of hell and trying NUMEROUS things. It still feels kind of surreal.
     
    Last edited: Jul 5, 2017
    Timaca likes this.
  18. Groggy Doggy

    Groggy Doggy Building a New Home

    Messages:
    1,129
    Likes:
    4,147
    @Tammy
    Great job on figuring out what works for you! I am so happy you are feeling better now!!!!!!
     
    Tammy and hellytheelephant like this.
  19. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

    Messages:
    1,478
    Likes:
    7,557
    Don't waste your money on seeing anybody who claims to treat ME. There are supplements and pacing techniques that can help lift the brain fog/ help you manage symptoms. Vitamin b12/ Methylfolate, magnesium and creatine are my top ones for trying and if you haven't got one already think about using a heart rate monitor.

    The rest is doing a lot less than feels natural.
     
    hellytheelephant likes this.
  20. adelheid55

    adelheid55 Senior Member

    Messages:
    381
    Likes:
    582
    I think if you find out what it is, you or your doctor may be able to treat this. I know there is no cure for ME/CF but you might suffer from an illness that can be treated.
     
    hellytheelephant likes this.

See more popular forum discussions.

Share This Page