'The Road Back Foundation'

Since FMS was my first diagnosis before being taken into the world of Autoimmune Diseases, and because the symptoms are so similar to FMS, you may want to take a look at their website. It is a different diagnosis and treatment theory for what ails us, seemilgly to treat what the cause is rather than unsuccessfully treating symptoms. Worth your consideration.

Be well, be happy,

SK

Hi,


I made this same post some time ago and never got any replies. I see a special doctor out of state for abx since most doctors are now phobic of them. I use them ocasionally now to control fevers, which the doctors don't want to admit is a problem because they're under 100. This has reduced my pain considerably but I am still a CFIDS/FM patient in need of disability benefits.

Of course I've always felt I had lupus and MS, and always test negative; lyme disease is also negative but then those tests give false-negatives more often than not.

I did tell Sunflower72 about this Foundation based on my experience and she was checking them out, looking for an M.D. You might want to send her a message and see if she's found a doctor.

Blessings - Katha

Hi SK,

That is a good suggestion. They say that there are many conditions out there that mimic Fibromyalgia. Exploring all options to treatment is a good idea. I wanted to be absolutely certain so I went to a Fibromyalgia specialist some years ago and he confirmed my diagnosis. He prescribed me zoloft and it helped eliminate pain in my arms and shoulders. It also helped my memory.

Had take my Mom to Dr today, she has blisters all over her, I feared Psoriasis or worse, Shingles, he said it is Eczema, an autoimmune skin response to something. I told her to lay off the raid she has been spraying on the outside of her bedroom window, where the stink bugs seem to gather! My husband also has it, grand kids have psoriasis, so I am ultra careful with soaps, and chemicals.

Anyway, he asked how I was, I told him about 4 shots of Enbrel, he said I really have to be careful with infection, so I asked him about the Road Back Foundation theoroy to treat this 'mycoplasma' invading us, this teeny tiny ameba like thing that causes the autoimmune, it is treated for life by a Tetracycline type antibiotic, he resonded that it is just as dangerous to the cells of our body to bombard them for life with antibiotics! So you just choose what you want to battle.

Thanks for responding, will be back to finish this in a bit, as I want to talk to you a bit.

We well,

SK

Hi Katha,

Yes, they keep looking for MS and Lupus with me too, not that PsA, Raynaud's, Sjogrens, and Spinal Stenosis are not enough, but he told me with the diagnosis of overlap syndrome/FMS that it was only the beginning of the diagnosis. He was so right!

As for asking how I was, I told him I was not sure if the Enbrel was helping or if it was just the normal 'seasonal improvement', but that I still thumped and ached and screamed when storms are building, the barometric pressure I guess!

I can tell you that most insurance companies do not want to hear chronic fatigue syndrome, don't cover it. I read an interesting article about adrenal fatigue, might have been her or on the PsA group. Something worth considering. I wonder about going to an endocrinologist, still think I have Thyroid problems too, doesn't show.

Sunflower is in my area, I gave her all info for my Doctors, she wants to see them all, they don't have all the answers, but they are so good, and never give up.

I sent Sunny the same thing, but after Doc told me about the cell destruction from the ABX, well, doesn't sound like it would be that fantastic an idea, probably couldn't take enough probiotics to ever level yourself out!

Sounds like we are just about in the same boat!! Have you looked at your fingernails for the pitting, checked your family history for RA or Autoimmune, Psoriasis...?

We will have to talk more, for sure!

SK

Hi dozer,

I have never heard of Zoloft being used, but should be a good idea, on track with Savella and many of the others used. Savella helped me tremendously until it made me shake uncontrollably, that was the end of that! So glad you are getting relief.

As many people who are stricken with this, I am sure a FMS specialist would have a booming business! So many young kids are getting knocked down with this!

Be well,

SK

SK, you mentioned pitting on fingernails and I was wondering if you could elaborate on this? It is a problem that I have so wanted to ask. Also, what do you mean by antibiotics causing cell damage? Maybe it is just late and I’m becoming loopy :slight_smile: Sunny

Sorry, I did not check back on this blog before asking you the questions. So you're suspicious of cell damage with continuous abx? That may be. I have a friend who went through it for what she said was test-negative Lyme. She does have tremendous bowel problems, reflux damage, and other complications, but some of those complaints are related to other non abx meds. Her diet is low protein due to gluten and whey intolerance - part of her problem IMO. I should post on the necessity of amino acids - I really believe in that.

I'm glad Sunflower got a good list of doctors from you, at least. Thank you.

I have been checked for autoimmune and Lyme; the tests are terrible so a negative result doesn't really mean anything to me. My sed rate is even low, I think that's because I don't have the capacity to do the sedimentation process! Inflammation is obvious to me anyway.

Take care, Katherine

Hi Katha,

I had left a message that several gals on the FMS would like to talk to him about the treatment, he is using this treatment for PsA, and told me that he did not feel qualified to talk to you about treating FMS with this as he does not have it and it could actually cause LUPUS, if the dose is too high.

My Dr said there could be damage to the cell walls with a lifetime use, so you really do need to seek out advice from a Physician who is very knowledgeable of this treatment, and totally aware of the pit falls!

Stay in the loop, join us when you can!

SK