Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
ME/CFS sufferer here, no profile yet but here is my short story. Symptoms started (mild) after a MRSA infection years ago. For last two years, fatigue has set in managed by exercise and stimulants. Last year worse again, added Kratom for pain and epinephrine for when I just needed to be on my feet. then in December I had a stomach bug that kept me in bed for two weeks and I was groaning in pain for most of it. Scared my wife as I am usually highly tollerant of pain.
Brings me to today, currently I am focuing on combating a difficult to diagnose fungal infection (candida and possibly other molds). Combined with periodic attempts to combat MRSA (methecilan resistant Staph Aur. bacteria). At present most of my day is spent feeling quite well but with waves of bad symptoms. Symptoms that include discomfort, malaise, confusion (even forgetting where I am driving), head pain (worse than ache, like menengitis), GI-issues, and everything that comes with your typical flu (except no cough). Other symptoms too on occasion.
So to my question. I am convinced that most of of CFS suffferors have more than one issue we are dealing with. I am fighting both bacteria and fungal infections with some success. My question is what direction are you all taking? Is there something I and my doctor could be missing. really, I have directed my recovery and have not had need of doctors who seem to not help ever, and offer medications that often can make it worse (like steriods).
Other things I am taking.
1. Injectable vitamin D3, injectable b12, and hormones.
2. Massive probiotics including every known fermented veggetable I think and over the counter probiotic pills.
3. heavy loading of prebiotic materials (Best success so far)
4. Antifungals (Multiple kinds) great results with this too. Antibiotics standing by if antifungals allow SIBO to happen.
5. Potassium iodide for thyroid. Esential minerals via himilayan salt and oral supplements. heavy doses of vitamin C.
told you what I am doing because I am having some success with it. I pray this helps someone, but really looking for even better wisdom from you all. What could I be missing, or doing to make problems worse or future problems? Clearly this will harm my body, but so far the results are quite inspiring.
I realize too that my challenge might be totally different than someone elses. Caution because I did what is called investigative prescriptions (trying to determine what is wrong by what meds I respond to). if you take anti-fungals too, expect to feel like HELL the first week, that means it is working, so don't stop unless you cannot bear it any more.
OK, so who wants to share trade secrets?
With that said, the best results I have had are from anti-fungal meds. At first they make you feel like hell has closed you in, but that is because they are doing their job. killing the mycotoxins produced by fungus (mold).
Yet, back to your wisdom...we are clearly susceptible to anything we inject (or inject). It does require diligence to determine. May I ask you if you are taking anything at all? probiotics, fermented foods? Any natural anti-fungals or anti-bacterials like grapefruit seed extract or even wild honey? Do you have any food intolerance (which I have cured by restoring my gut flora)?
My discovery process has pointed to the fact (for me) that in some cases my symptoms worsen when on the right track. this is why we continue to suffer because we limit ourselves to what doesn't make us feel worse. I concede that it would be dangerous to assume that if you feel worse you are getting better too.
Well, I will pray for you and hope for you to heal too. I will continue to share my progress (or regress) on here to hopefully help others even if to just avoid my mistakes.
May you find the healing Hope2heal, if you want to investigate further on your intollerances, I am glad to share what worked for me. rest assured, I feel for your experience. May you recover nicely.
MRSA infections. You have tried many things. Are you going to an alternative doctor, i.e a
naturopath? They are usually the ones who work with these things from my experience. I have
been treated for mold and candida and have read Ritchie Schomaker's books. After some ten
years of dealing with these, for me, they're still ongoing. I have cleaned my home environment
and diet has always been a challenge. Lately, I have gone back and read "Healing Lyme with
Herbs" by Dr. Stephen Buhner. Are you familiar with him? He's an herbalist who lives in New
Mexico. I know you're not talking about Lyme but Buhner also has a protocol for chronic fatigue.
He has quite a bit of info on his website gaianstudies.org I believe it is. If you do a search
with his name, his website will come up. You may come across some herbs for pain maybe
mold on there and other things. He's a wealth of information. I know the caprylic acid he
mentioned helped with some of my candida issues. Whole Foods makes a brand called
CaprilyCare which I found to be good. Good wishes with all of this. I admire how you've
done all this research and it certainly sounds like you've been on the right track.
1. I would like to know more about the injections you do or have done. I know patients that have been treated by B12 injections for fatigue but they also had low B12 blood levels. Mine are normal.
I take a B-complex supplement.
Also, what hormones do you inject? my fatigue is the worst around my cycle. I require more sleep for a week prior to my cycle every month. So my internist and I have discussed possibility of hormone imbalances but he is not comfortable or familiar with treating someone my age with hormones. Nor do I want to go down that rout if I do not need to. curious about the process of deciding to be treated with hormone injections.
2. I have never heard of CFS correlating with GI fungal infections. I am very curious to know what anti-fungal you have taken.
3. I would also like details about the prebiotic materials you mentioned about and stated you have had great success with. I take a great probiotic now and I feel less "sick" after eating since starting them. I am most sensitive to breads and heavier food.
4.I started seeing a chiropractor and many of my pain symptoms went away. I have less bloating, no longer get debilitating headaches/migraines and I have less leg pain. The chiropractor has helped me think of my body as a whole and not individual symptoms. Have you tried any Chiropractic care or acupuncture?
Thank so much for all his info! I am always looking for alternative options and am open to any suggestions.
Also, even before that I came to realize that sometimes when my neck was out, it caused symptoms very much like CFS in terms of fatigue, dizziness and muzzy-headed-ness. I came to learn to recognize the difference and know when it was time to get my neck adjusted again.
I've also tried acupuncture for certain things with mixed success.