30 years of ME, struggling to cope please help

[Tammy7]

hink it's perfectly valid that if you have high titers for EBV or CMV (two very common viruses), regardless of which titers it is, recent or old, you should have a cyclical access to valtrex. That's my opinion as a patient who has this and it stops the fevers for me. Not a cure but an improvement for some people

You mentioned cyclical access to Valtrex? Do you personally take it cyclically? What dosage do you take?

 

[Nancy Hulen]

Hi Michelle, I too have had this for a long time-40 years. I had multiple throat infections that wouldn’t go away. The doctors gave me a lot of antibiotics. Then I became really sick with something else -my friend said I was hallucinating. Different symptoms over the years were terrible stomach and back pain; horrendous pain in different parts of my body, mostly my head and neck; my left leg went dead and I couldn’t move it, bed bound and had to crawl up the stairs, severe fatigue, my eyes would water in the grocery store (people thought I was crying), syncope and others. I went to multiple doctors and alternative practitioners and the diagnoses were varied which included CFS, hashimotos, fibromyalgia, lupus, addisons, viral infections, Epstein Barr Virus. The pain was so bad and so continuous that oxycodein didn’t even touch the pain. After many years, I happened to read a book by Dr Wahls, MD about her MS and how she went from being in a wheelchair to now walking and being active. i was interested because her protocol also helped people with other diseases. The low carb protocols help inflammation. So, I decided this was my last hope, and I started. It took me 6 months before I thought I noticed a difference and was determined to continue. It was difficult but became easier the longer I did it. This has basically allowed me to manage this disease and given me back a decent life. i don’t usually have to take anything for pain, not even over the counter drugs. I’m not cured, but I don’t hate my life anymore.

 

[TJ_Fitz]

Hi Michelle, I too have had this for a long time-40 years. I had multiple throat infections that wouldn’t go away. The doctors gave me a lot of antibiotics. Then I became really sick with something else -my friend said I was hallucinating. Different symptoms over the years were terrible stomach and back pain; horrendous pain in different parts of my body, mostly my head and neck; my left leg went dead and I couldn’t move it, bed bound and had to crawl up the stairs, severe fatigue, my eyes would water in the grocery store (people thought I was crying), syncope and others. I went to multiple doctors and alternative practitioners and the diagnoses were varied which included CFS, hashimotos, fibromyalgia, lupus, addisons, viral infections, Epstein Barr Virus. The pain was so bad and so continuous that oxycodein didn’t even touch the pain. After many years, I happened to read a book by Dr Wahls, MD about her MS and how she went from being in a wheelchair to now walking and being active. i was interested because her protocol also helped people with other diseases. The low carb protocols help inflammation. So, I decided this was my last hope, and I started. It took me 6 months before I thought I noticed a difference and was determined to continue. It was difficult but became easier the longer I did it. This has basically allowed me to manage this disease and given me back a decent life. i don’t usually have to take anything for pain, not even over the counter drugs. I’m not cured, but I don’t hate my life anymore.

Yes, Dr. Wahls/Paleo is good for me, too, but I've recently learned that I do better if I do low-oxalate also.

 

[Nancy Hulen]

Michelle, Me again. I just wanted to let you know that I’ve been on the Wahls Protocol for at least 10 years. It took years to get to where I am today. It’s a change in eating habits that I have to continue with. Each year I felt better and better, but it took a very long time.

 

[Merida]

Michelle - I have dealt with this illness for 25 years, and led a large support, speaker based group at the local hospital for 13 years. My background is clinical diagnostic microbiology. Enough said - appreciate I am a careful observer, researcher. I had an article published in Fibromyalgia Frontiers in 2008 - " Pelvic and sacral Instability: A facet of Fibromyalgia." Viruses/Lyme disease are important considerations - but why are some affected and not others ? My son developed the pain/fatigue syndrome at age 5 after a well-documented EBV infection from pre-school. My Mom had this disorder. I developed it after a neck/pelvis injury in 1999 - age 49. Was disabled. Totally bed-ridden one year.

After years looking carefully, and several appointments with neurosurgeons ( wonderful !!! neurologists - no help), i discovered certain important things: I have a mild scoliosis, hypodevelopment of the sacrum, probable tethered spinal cord, Chiari 0 ( expert neurosurgeon diagnosis - I had a CINE MRI flow study ).
I have higher that normal intracranial pressure - may have Ehlers Danlos hypermobility. Also, loss of lordotic curve in the neck ( published info for FM/CFS - yes ).

Be aware that spinal fluid is pumped back to the brain by a minute, sophisticated movement of the sacrum and the occiput. Inhale - occiput moves outward, sacrum moves inward. Exhale - occiput moves inward, sacrum moves outward. This work was done by Sutherland, Upledger, years ago - brilliant traditional osteopaths. So, I did a lot of craniosacral work to align the pelvis, neck, occiput. Helpful, but still unstable due to the old injury. Also, pelvic floor physical therapy with expert. Acupuncture - always helpful. Gentle pool work - no real swimming, but walking in water and gently movements. It took 1 year - 3 times a week.

As far as meds - nothing can replace ( for me ) the helpful pain meds which are now prohibited by pain management groups and virtually all doctors. These medications help with pain, but also dampen the hypersympathetic state that I and many others are in. I used them for 20 years and had no liver or kidney problems. Very safe. Wellbutrin ( brand ??) was helpful for energy and regulating bowel function and sleep cycle. I started very low dose in the morning. First week was a little crazy, but after that - great - for about 5 years until it stopped working. ( generic not so good ????)

I can only share what I did - and that this may not be the correct path for you. But maybe there are some things here that are helpful. Always - working closely with a supportive doctor - one who appreciates that this is a real physical illness, not some emotional or psychological disaster.

Ironically, I had one tick bite in Virginia in 2010 -with a strange little rash. My infectious disease doc did a screening lab, which was negative, but was done too early in the disease. Now - 5 positive bands - CDC positive for Lyme. Crazy.

Sending my hugs and thoughts. DO NOT GIVE UP. Healing possibilities are always there - sometimes in the shadows of our consciousness. Sometimes in the help of a professional who understands this.

 

[Not dead yet!]

You mentioned cyclical access to Valtrex? Do you personally take it cyclically? What dosage do you take?

Yes, I take 1gram twice a day for 3 months on / and then take a break. The break may be 1 week or up to 3 months. Depends on how dormant the viruses remain. My body doesn't seem to keep the viruses dormant. With valtrex, the titers go down to normal and my daily fevers stop, so it' definitely doing something. It's not a total cure. I can still have brain fog, exhaustion and other issues. But the exhaustion is better if fever is not part of it. The body wastes tons of energy creating a fever if the fever isn't going to work anyway.

This isn't even against ordinary medical advice. Just the level of it may be high for some doctors to trust. "Post viral fatigue" actually mentions valtrex in cases where epstein barr is causing the fatigue. At least in the medical coding I read about 4 years ago.

The Pridgen protocol is Famciclovir + Celebrex I think? If you can get a doctor to swing that (perhaps by verifying you have arthritis), some people find it helpful. Not everyone though. And it's not a cure. But it can help.

Famciclovir and Valtrex are two different forms of the same drug. Famotadine is more powerful because of the way it's metabolized and absorbed. But the mechanism is the same. It tends to be more expensive and neither is welcomed by insurance so I go for the cheaper one and take more. There's another one, Zovirax, but it's very weak you'd have to take too many pills of it.

 

[tatt]

Just to clarify. The NAC is what helps you from feeling suicidal? Interesting.

That and vitamin C - both anti-oxidants,of course.

 

[Tammy7]

@Not dead yet! Where do you get the anti-virals?

 

[Not dead yet!]

@Not dead yet! Where do you get the anti-virals?

They were prescribed by my doc. Luckily I had a doc who cared enough to prescribe it. No doc since has had an issue continuing it. So far. I'm always scared they will.

If they ever do, I suppose I can use Lysine, but it's not as effective. Better than nothing.

 

[Baz493]

Hi all, I am new to the community. I felt a kind of sigh as I read the conversations. I am a 30-year-old working woman who has been suffering from migraines for over five years. I have taken different kinds of medicines and found no use. Recently I consulted a chiropractor near me based on my colleague's recommendation. Now I am in chiropractic therapy. It is a kind of physical therapy. I felt so because I feel so relieved now. I could feel the result. I will share more once the treatment is done. Thank you. Have a nice day.

Hi Roland, I gradually experienced increasingly common migraines as I got older. Mine stopped when I realised that gluten was causing me to experience a wide range of health issues, including the migraines. I now know that a big part of this was due to gluten absorption of heavy metals, which you absorb from your diet. https://pubmed.ncbi.nlm.nih.gov/26160074/

 

[Centime Tara]

Hi, I am Michelle, it is a long time since I have been on a forum but I am struggling to deal with ME and need to know what I can do and how many others are like me. I feel like I am losing my mind! Brief history, I was 22 when I had a throat infection and never really recovered. I wasn't particularly ill with the infection, didn't stay off work. After though I just struggled, over the next 2 years went from full-time to 4 days, 3, 2 then work gave me an ultimatum of full time again or leave! Specialist said leave. Well I have gradually continued to deteriorate over the last 30 years, I am mainly housebound and use a wheelchair if I do get out, have done for 20 odd years. I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I now live in France, I also believe I have POTS so thought maybe treating that could help, but I hate seeing doctors as they are always dismissive and angry because I use a wheelchair. Stupidly I thought a POTS specialist might be more understanding, he wasn't! Saw him in July, he was also angry that I take Dihydrocodeine, obviously I must be addicted! He said it is highly unusal to have CFS for 30 years (he was annoyed when I disagreed and told him I hate the term CFS and that I was diagnosed with ME) The appointment caused a 2 month long crash and really messed with my head as he basically said whilst I probably have POTS my inactivity & wheelchair use has caused total cardiac deconditioning, this despite only having a cursory examination. My resting heart rate is only 50, but standing even for a few minutes has my HR over 120, of course he would not believe my resting HR was so low because it didn't go lower than 90 when I was in the appointment for obvious reasons, I was v upset by him, angry and close to tears, and he only had me lie semi prone on the couch for a few minutes whilst examining me before doing a 10 minute stand test. Even just sitting in the wheelchair without my legs raised has my HR way up. I have been using a HRM for years so I know what my resting HR is, but he didn't like that I used that either. Is this all my own fault? He has suggested lots of tests but I never want to see him again.

I am drowning in lost years, every day I do so little and it feels that my life is pointless, my husband has gradually taken over all the household chores, so I am not needed for anything now, and mainly just go from bed to the settee and accomplish very little on a daily basis. I always feel ill and fluey and doing anything feels like a gargantuan effort, but obviously when I am in a crash then I feel even more ill in every way and I am just in survival mode. On those extremely rare days when I don't feel quite so hideously ill, I am eager to do things, but I just can't sustain anything and always crash, even if I just sit outside for too long. Even just being too happy usually causes a crash. My crashes often hit full on 2 or 3 days later so I think I have gotten away with things, and then boom!

Dihydrocodeine can help me push through the symptoms a little, but obviously its only masking the symptoms and it mainly only just takes the edge off the pain and the fluey feelings. Losing both my parents in the last few years hasn't helped, my Dad to Covid last year was traumatic. Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me. We don't spend time with friends or family anymore as it is just too difficult, makes me ill and it is just easier not to try, as no one understands I really can't cope with more than 15 minutes of visits. I want to get some life back but it just feels impossible. I now also have osteoarthritis and osteopenia, again an angry doctor took one look at my wheelchair and ME diagnosis and told me its my own fault at my age (52) because I am so inactive.

How many of you have been ill this long and have deteriorated. The ME Association prognosis says it is unusual to continue to deteriorate, is that true? I just wish there was a definitive diagnostic test so I would know if I am genuinely ill or have I somehow done this to myself like Doctors keep telling me I have? I feel sick at the thought I am responsible for ruining my life and my husbands, I never imagined I would still be ill, never mind more ill, 30 years later! Thanks for reading this, sorry it is so long and also I am not sure if I have put it in the right section.

I sympathize with your experience with ignorant doctors. Too bad they don’t have to stay in medical school permanently! After firing a number of them who were both ignorant and incurious, I finally found a young one who was willing to educate himself about it. He has no answers, but is helping me put all the pieces (a zillion specialists, none of whom talk to each other) together. I hope you can find a new doctor. The one you describes sounds incompetent. I’m so sorry you’re going through what you are.