Going To Start Treating For Chronic Fatigue & Fibromyalgia

Vanilla_Bean,

Make no mistake - CFS/Fibro symptoms are very real. just as real as UC symptoms. The issue is that 99% of charlatans in the mainstream medical arena don't know how to address it without drugs. Most doctors lack the proper education and training to understand the microbial component behind these illnesses, so what do they do? They mess it up even further by loading people up with antibiotics.

Thoreau,

Levaquin huh? I wouldn't wish that on anyone. What were your vitamin D levels last time?

Llmds are good for Lyme, yes.. But most are skilled in more then Lyme. I also love my Lyme literate rheumatologist.

Infectious and environmental sources for chronic disease fights philosophically with the immune theory. I figure, if you have played nicely withe the guys who believe in immune roots to chronic disease for awhile, it's only smart to really investigate the other theories.

So, your question about what do you do.

4Rs. Remove. Replace. Reinnoculating. Repair.

In that order. And you mAke sure you do each stage for long enough.

Re Lyme. It's hard to catch on tests and many have borellia Ducati and microti, which only a couple specialty labs test for. Not that you have Lyme, but my point is that maybe you have something like I do, mycoplasma pneumonia. That caused a lot of my fatigue. I mean, you've had. Main stream dx of both deep seated staph and ebv. There are obviously some infectious things at play.

I'm really not trying to antagonize you. I'm trying to encourage you. Through my own journey I could have never anticipated that I'd be healthier at 35 then I was at 15.

Sorry, been typing that last post for awhile so I didn't see your reply.

If I were you'd I'd do one last doc search and find a Lyme literate rheumy.. Or one who believes in ebv. I have great resources in ca, if you happen to be here. Mine is paid for my health plan. I'd try really hard to find someone Lyme literate, but not obsessed. Some of them seem to think everyone has Lyme.

Viruses are interesting because they have such a strong shell around them. I'd bet the ebv is just a gate opener and you can't really go after it directly. It will resolve when your immune shstem gets out of crisis.

The staph would be my focus. I'd also get an antistreptolysin o test. Labcorp runs them, your docs can easily order them. They might have. I'd get allllll my lab results and make a list of what you have been tested for too.

I'd write down my list of symptoms going back to birth. Bring my records in and try really hard to find a good doc with a new approach. If you can find a functional medicine dr, maybe start there.. Local CFS groups will have doc recs, contact your local Lyme group and get their doc list. It's best to have a guide to help you, I could kick myself because I went around in a lot of circles over the years because I didn't do things in the right order, or for long enough. When you have chronic immune effecting illness, it takes time. Along with attacking the roots there is so much more that you must do tho..

Everyone here is right. Stress kills our immune system. We must work on our stress levels to be well, likely your adrenals are fried already, so it's important to focus on this.

Nutrient stores.. UC and CFS/fibro deplete us. We must replenish. I had to take a lot of supplements as I was healing to make up for the things I lack or that my body had a hard time doing itself. Nourishing our souls and bodies is paramount.

Last, I really do think that biologically when rubber meets road we were designed with some basic pathways that need to work. Unfortunately those pathways can be damaged and need support. I believe in methylation support, also mitochondrial support. I also believe in vitamin d helping the immune system, so supplementing it till blood levels hit atleast 50. The lab low is under 30, grossly under healthy levels.

When know that our gut does so much and when it is damaged our whole body feels the toll and the journey to health is unwrapping layers of an onion.

hang in there t man - sucks that there aren't simple answers to all the questions -

sounds like you a good plan for basic maintenance - now you just gotta kick the lurking bad guys in the nuts -hard !

I personally myself have to agree with pk in principle - there is only so much you can gain from all the docs you've seen - I think it's a very bumpy road trying to find a doc or docs who have the experience and knowledge to treat anything but everyday, run of the mill maladies - if there really is such a thing -

as far as how to go about it, I think pk is your best bet right now - listen and learn -

or maybe you could go my route and let dumb luck lead the way

Path: I live in Nebraska. Around here Lyme is very rare. The ID doctor said that people really don't get it from ticks around here. In Minnesota it's possible, but I haven't been there for 4 years or more, and that was in the winter. Before that it's been about 12 years.

The odds are against Lyme, practically speaking.

By the way, my rheumatologist did say he was not in any way certain of what I had... but wouldn't completely rule out the EBV effecting me even if the labs showed no viral replication.

From what we're talking about here, I assume my plan is:

-Go back over the history of my life and list symptoms out.
-Look for any patterns.
-Improve lifestyle habits: gentle exercise (limited for now), nutrition, meditation, good sleep, rest.
-Purposely eliminate stressors wherever I can.
-Take certain supplements: Vitamin D for sure, what else?
-Possibly restart Olive Leaf Extract and Wild Oregano Oil daily for a few months?
-Go back to my rheumatologist, address my concerns, and see what he suggests from there?

**I need to know what I am looking for now. I know you got a microscope and looked for yourself. Short of doing that myself, or even if I do... what do I need to do? There are what looks to me like tons of possibilities, and I need a general formula for how I am going to work this out.

I am honestly very overwhelmed because I do not know what exactly to do. Doing something is never an issue, it is just doing something constructive that I have a hard time distinguishing. I have chased a lot of dead ends with these problems, and want to start seeing something concrete and meaningful.

Llmds, at least good ones, don't advertise. Lemme ask my Lyme groups if they know anyone in ne. The doc who said he wouldn't rule ebv out us a good start. Gimme a couple days to get off the road and I'll write y a bunch more on the exact tests I'd wanna see and on some things you can do.

PathogenKiller said...
Llmds, at least good ones, don't advertise. Lemme ask my Lyme groups if they know anyone in ne. The doc who said he wouldn't rule ebv out us a good start. Gimme a couple days to get off the road and I'll write y a bunch more on the exact tests I'd wanna see and on some things you can do.

Thank you, Path. If you've been in my situation you know how I feel I bet...

I know how important health is, and have tried like heck to feel better. I definitely have improvements to make in terms of stress relief, exercise and nutrition. I have found it hard to be successful in the rest of my life AND work on my health all the time. I feel like my life is in a blender with me standing still in the middle. Everything rushes by me and I just grab some aspect of my life for a bit. I work on it, and then let it go back into the blur of spinning craziness.

Take your time, but I do really look forward to what you have to say. Thanks again.

Eva: I only chose to focus on a new approach because I am hurting worse right now than I have in a long while. I have a hard time believing that not doing anything is going to help me when I've felt terrible for most of the last 17 months.

Certainly there's a bit of desperation in me, but it's either keep trying or sit back and be a grump in pain. My fiancee tells me I'm a different person with or without pain. I'm about 50% effective at most with work when I feel like this.

Hahaha Soy...

I entirely understand where Eva is coming from. Yeah, I've even noticed that I have made a lot of "help me" posts lately. Maybe I'm dealing with it wrong. I am done posting about major issues now I hope, and believe that this year is looking very hopeful now.

I am seriously just mystified as to what these pains even are. Having to take Tramadol every morning in order to go to work or not be a crab-ass is really intriguing to me and I want to fix it.

Eva, no disrespect intended at all. I love a lot of your responses and posts. Happy New Year! :)

Thoreau Are you taking tramadal and cymbalta at the same time? That can lead to a serious side effect - seratonin syndrone. Also, to be effective, you have to take the tramadol consistently, not just when you fell like it as you would do with a nsiad or aspirin. And tramadal takes a while to build up in your system to work. Did your pain start when you started the tramadol by any chance or when you stopped the cymbalta? These are both very very powerful drugs with significant side effects when you start them and when you stop them.