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Old 03-01-2011, 07:05 AM   #1
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chronic fatigue syndrome + fibromyalgia, I really want to help you

my health issues:
When I first got sick, 14 years back, my fatigue was off and on, lasting about 2 weeks or so, then I'd feel better for awhile, then the fatigue would recur. Then one day it decided to be a snot and occur every day. I was diagnosed with CFS, told I had an autoimmune dysfunction and that I'd be sick the rest of my life, was positive on EBV past infection. The CFS was diagnosed because of my ANA being positive. I later was diagnosed with mild lupus, I did not stick with that doctor, so the general doctor kept my dx of fibromyalgia and didn't believe I had an autoimmune disease. My muscle pain, general widespread aching, and muscle spasms, did not occur until a few years after the fatigue. I only have joint pain with walking. I have back problems from degeneration. My nerves feel like they are shot, tingling, burning, shooting pains, cooling sensations, I think all that has to do with my back problems. My bladder, esophagus, and tummy have chronic inflammation. I also have a slow digestion problem with my tummy, I think causes my weight gain issues. Headaches always. Sleep issues. I am negative for inflammatory markers. No kidney, heart, or lung disease. I do not swell. I do not get rashes except for the occasional hive break outs. The mouth sores that I've had occur on my outer lip was autoimmune. I developed muscle weakness last year. I also became B12 and Vit D deficiant last year. The mouth sores was my clue to the autoimmune issue when I kept getting so tired and flaring with the breakouts, they started occuring every month or two, it got so bad. I had myself checked for herpes, negative. Plaquenil stopped the outbreaks, stopped my fatigue for a couple of months, and stopped my muscle weakness.

test results:
I have always had positive ANA's, 1:320 H, homogenous pattern. Nothing else was apparent in my blood work, and I mean nothing. Last year when I had it rechecked my ANA titer was 1:640 H, and my RNP was 7.3 H. The autoantibody to the disease finally shows itself. My ESR, RF factors are normal. My doctors blew this off like it was nothing, but I proved to them taking antimalarials, and it helping me feel better and lowing my RNP, that I had an autoimmune disease, I have since been diagnosed with mixed connective tissue disease. I'm without question of that being existant, but it was bull how I had to go about finally getting that diagnosis. My disease is mild, so certain things are not present like you might see with some people. That makes it very difficult to get a diagnosis through a doctor that is not a rhematologist.

What this has done to me:
The CFS and fibromyalgia diagnosis about drove me out of my mind. I never did accept it as a final diagnosis. I could not do it. Here I'm so sick I can't get out of bed without feeling severe fatigue and pain, and they diagnose disorders that have no logical explanation. I wanted, I needed, a better explanation for this. Only thing I had to think about was how my first RN told me I had an autoimmune dsyfunction and would be sick the rest of my life, when this actually happens, I can see that she knew exactly what she was talking about. These illnesses are a tough diagnosis. I have nerve problems in my back, it gets blowed off as fibromyalgia, no MRI no matter how bad I cannot tolerate the pain. It's not just a fibro issue. I have had multiple
organ prolapses and blocked renal stones blamed on IC, current problems in my pelvic area are being blamed on that, and I know it's not the cause. It's frustrating when you develop problems, and they won't look into it because they have a name they can already call it that explains everything. I also have went through alot of depression and anxiety. It is probably very easy for me to be looked at like I have fibromyalgia syndrome because of that.

The disease took over when I was 26 yrs old. Ever since I have lived a non-functional life. I have not been able to work, I tried going to school/college twice only to fail at making it through the entire course. I've been on SSI so I haven't been pushed into feeling like I had to work even if I wasn't able. I've laid around in bed for the most part, crying in my own misery. I did not keep up with my housework, dishes, laundry, anything. It would be a week to a month before I'd really get all that done. Stopped hanging out with my friends, became kind of antisocial for quite along time. Did not visit my family. Did not get out and enjoy myself and do things. I have severe chronic fatigue. The biggest problem I have, that is it. I couldn't finish things. Problems with my memory, concentrating and focusing. The disease basically makes you feel dumb. Your body ends up feeling like that of a 150 year old person. You lose your muscle strength because your so tired. I stopped exercising after awhile, I stayed piled up in bed the majority of my time. I had no spunk whatsover to fight this. Worst mother of the year award by the way. They get to deal with mommy being this way, and it was not easy on them. I have went through many episodes where I just didn't want to go on another day. Lack of energy, lack of the thrive to live.

I saw a tv show last year on people with rhematoid arthritis and lupus, and how they just wanted to stay in bed all the time, how they let their housework go, and pretty severe with these women, their houses were so bad, it looked like someone who hords. I knew after watching that show that is exactly what is wrong with me.

If my story sounds very familiar to yours, you really need to have your ANA looked at. You need to have the doctor do the test, and go back and sign a release form and get a copy of those medical records. They will tell you the results are okay when they are not. Mine was 1:640 MY GOD how worse can it get. You could have a very valid reason for feeling so tired. My first RN I saw with all this, believed that chronic fatigue syndrome was due to a dysfunctional immune system. I believe she's 100% right.

If any of you do have your results, or get them, please come back on here and post it, and tell me what your doctor had to say about your results.

Last edited by neveragain444; 03-01-2011 at 07:13 AM.

 
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Old 03-25-2011, 11:08 PM   #2
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

Hello'

This is my first time on this website. I just signed up.
My fatigue started about 13 years ago. after taking antibiotics for the same infections over and over, the Dr. decided to test my blood. Anyway' I guess he just had a feeling about my illness. When I talked to his PA' She just said I had the EBV virus and went on to explain that there was no cure and I would be tired and sick a lot and that I would have good days and bad days.
It wasn't long after that , that I went into a severe depression and I had anxiety attacks. My depression had gotten so bad that I was affraid to stop taking them and so I'm still on them. I also have to take medicine to sleep but it does help. I have asked other Drs. about my fatigue and they all just dismiss it. Sometimes I get up about 10 or 11am and have about 3 cups of coffee and I just sit on the couch like a zombie. Another symptom I have is short-term memory loss. I can be talking to someone and can't even remember the name of what I'm talking about. so them' I'm like' you know that thing that does this or looks like this or is this color or starts with a certain letter. I don't want to think alzheimer's disease yet. I'm only in my forty's. Thanks for listening.

Does any of this sound familiar

 
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Old 03-26-2011, 05:07 PM   #3
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

Hi, 4 years ago i started suffering with migraines,which eventually i got under control. 2 years ago i was hit with pneumonia and a blood clot on the lung. After that depression took hold and the terrible fatigue and a few months later fybro was diagnosed. Also since the pneumonia the migraines are out of control at least 2 a day life is hard and messy,anybody else have trouble with migraines?

 
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Old 10-17-2011, 08:45 PM   #4
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

Hello and thank you for posting such a detailed history of your journey. I am new to this site. Actually, I found a different site that I had joined in 2007 (the beginning of my nightmare) It was eery to see that the symptoms I had then, still haunt me to this day. If I can call myself fortunate, I guess maybe I am when compared to others on this site. My "relapses" occurred annually lasting anywhere from 8-14 weeks, sometimes less. I guess it was the debilitating fatigue that first hit me. Then the muscle/joint pain, neck pain (severe). The one thing that has been consistent throughout these years that I have not been able to identify in others testimonies is the burning sensation I get in the palate of my mouth. At times it feels as if small blisters are forming, but none to report. One of the relapses a few years ago was accompanied by a nasal lesion..Each time I have had extensive workups. The only clinical confirmation that anything medically is happening to my body is the positive ANA. At the beginning stages of my "syndrome" I had seen a neurologist who was leaning towards ? MS. You have the symptoms she would say, but then again, autoimmune disorders mimic each other - MRI Brain at this time proved to be normal/abnormal if that makes sense. Two lesions "non-specific" ? demylinating disease or migraine headaches..Well, for one, I am the lucky soul that does not suffer migraines, so that to me was a rule out! From there it has been a roller coaster ride of teaching hospitals to include the Mayo/Cleveland Clinic - not to mention the cost of travel and meds. Thank God we have insurance, but in saying that, the copays & out of pocket have added up. I am amazed at how many $$$ go into searching for the answer of this mystery diagnosis with the end result most times being the " I am baffled by your symptoms" -yet so many of us experiencing it can speak the same language. I am sure you, like many and myself struggle/d with the loneliness and neglect felt throughout our flares. Five years of suffering this haunting illness, and now I am going from a short term to long term disability with my company of nine yrs. It is difficult to hear the words, " but you look so good" this is what I would get at work when my body felt as if it were 100 yrs old- I can totally relate to you..My prayers are with you and the million of sufferers who feel as if they stand alone in this tormenting disruption to medical society..Again, thank you for sharing. Kim

 
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Old 10-18-2011, 04:16 AM   #5
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

I was re-diagnosed with chronic fatigue syndrome through a rheumatologist, same one ends up telling me I could very likely have an autoimmune disease but that she would not treat me with anything other than plaquenil unless I had something like a heart or lung disease. My PCP can't treat it with anything else due to malpractice issues. I am baffled.. I hate this disease !!!

I have now become hypersensitive to almost all medications. I have this neuropathy pain/sensations that occur all over, medications make it flare, make it worse.. Headaches from my meds. Sleepiness.. Plaquenil used to help my energy, now it makes me sleepy. I tried Strattera recently, knocked me out faster than ambien. Seems I can't take anything I don't react to except neurontin.

I tried to stop all of my medications due to reactions, except my vitamins the doctor has me on.. Find out I have hypersomnia so bad that I can't. Medications control my sleep. I took ambien for 11 years, and I'd sleep 6-8 hrs a night, and only that, I had to do as the medication wanted me to, if I tried to go back to sleep, it didn't work. Now I take neurontin for my nerves and to help me sleep, it helps me sleep all night like I want to, and I am able to get up out of bed the following day. Without it, I cannot stop sleeping. I mean what in the world ??????????? Medications controlling my brain, must somehow be keeping me awake during the day..

This is totally freeking me out. Even if I have an autoimmune disorder vs CFS.. Doesn't mean I should sleep 20-22 hrs a day !!

Well one thing I know for sure, if I get an infection of any kind, I flare like crazy. So I have to take medication to avoid that.. I think I have HSV-1, I also have EBV. And the HSV-1 occurs every 4-6 wks without taking antibiotics. Sooooo..

My problems started a few years after I got married, my ex-husband infected me with HSV-1, pretty certain of this.. Kept getting virus & bacterial infections from my kids. So I get the fatigue off and on, then it becomes constant, later on the pain, positive ANA rolls in.. Did it mess up my immune system?? I don't know what to think.

I don't have a classical case of an autoimmune disorder. Blood work is normal except my vitamin levels. Inflammatory markers normal. I don't swell but my joints and muscles hurt. I don't have raynauds disease. No serious organ damage. So to get a rheumatologist to take attention to how bad my symptoms are, is a joke in the making.

My neurologist thinks I might have MS.. I am starting to wonder the same thing. He said I had all the classical signs (bladder pain, incontinence, frequency, congenitive problems, dementia, recurring nerve sensations/pain, fatigue, etc.. etc.. ) He also thinks I have an autoimmune disease and fibromyalgia.

Reminds me, need to call my insurance today and see why they haven't bothered approving my MRI on my brain..

I'm starting some online courses for college next week, not sure how I am going to get myself through this. I thought ADHD meds would help but Strattera is a joke for ADHD medication!! How's it supposed to help you think clearly when it makes you freeking sleep. When I'm tired, is when the congenitive problems kick in.. Well,, I don't know how I will be able to work either but I'm tired of having no life.. 14 yrs of dwelling on how sick I am,, and being all I can think about,, wishing I wasn't even alive, I am through with the bull. I will push myself as far as I have to so I can live a more normal life. I can't go back to what it was.. I hate this, HATE HATE HATE HATE HATE!!!!!

SCREW FATIGUE !!!!!!!!!!

Last edited by neveragain444; 10-18-2011 at 04:19 AM.

 
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Old 10-18-2011, 02:18 PM   #6
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

I'm with I get well, the source is probably Lyme. But say that to a regular doctor and you can see them roll their eyes. All your stories are breaking my heart. I'm right here with you. There are SOOOO many of us. It is an epidemic; no matter the name...CFS, Fibromyalgia, Lyme, we all have too similar of symptoms for it to not be connected in some way. Then they give us so many pills, with their own set of side affects; we just spiral. I too have opposite reactions and am very sensitive to drugs. I took Ritilin (2) 10's just to wake up for 10 years straight. Then 2 more at noon. BUT the Ritilin 20's are SR (sustained release) never kicked in enough. Now, I would sweat like a faucet, and my heart would pound. But, I was up. A Fibro Dr. in NC tested me for Lymes and I was possitive according to SC (where I live), but if I'd been tested in NC their guidelines are different and I would not have it. WHAT? Yes, GET your records. I was in a psych ward because of my fatigue in 1994. I JUST got my labs from then; which I was told was normal!! Infections, Low blood count...not important enough for them to mention. So, get your labs in your hand EVERYTIME! That NC Dr. was treating me for Lymes, with IV's and oral antibiotics. Then tests revealed I had candida (yeast overgrowth) and a stool test revealed Parasites!!! I had to stop to address those...with anti-fungal meds (which makes Lymes worse). My $4000 for the Doctor ran out and I can't go anymore! I have often said I would go to Cleveland Clinic or Mayo and sit there until they figured it out. I'm dissappointed to see that they did not help you. I've also said I was going to get eVERYHING together and go to the local university (med school) DEAN and say; here....make me a school project. Well, I wound up back in the hospital for Severe Depression because I am not living, I sleep 22 hours a day. If I push myself, I wind up paying for it for days in more pain for days/weeks. My son was tested for Narcolepsy. That is not only where you fall asleep easy. It's where you go into REM sleep too quickly. When we wake up, I describe it as feeling like 1000 lbs. well there's a word for that. Cataplexy, parylization, even just for a moment. Our bodies are mis-firing. SOMETHING is causing it. People say, "you don't look sick"....I want to slap them. My psychiatrist assigned to me said, my little self answered written test showed I have Major Depressive Disorder and "hypochondria". I told him, I answered that test truthfully, "do you spend a lot of time trying to figure out what is wrong with you?" I said YES....I do....I said well, then....I have many "cyber friends" that I communicate with that are truly sick that must be too!! He said to "try harder". I'm in a day program...to learn to cope...I truly believe that there is an underlying cause!! I think I found an a lymes disease dr. in the University's "infectious disease department". The Lyme assoc doesn't have ANYONE in my area as a LLMD (lime litterate Med Dr.). I found a Hyperberic Dept at USC....It's suposed to work on getting rid of Infections including Lymes. Well, there...they only do it for: things they can see: Skin BURNS, Gangrene, Bones falling off....Why can't we have something VISIBLE. If I won the Lottery today, I will contact all of you, we'd all fly to the CDC in Atlanta and Not leave until they tested us. Did you know the NIH has a website for trials, one of their requests was for info on unknown diseases. They've shut it down, they got too many. I BET 90% were our symptoms.....FATIGUE, not functioning, pain, headaches, dizziness.......=Dead. Everyone...we have to figure this out...for our children. My son is right behind me with symptoms... Look for Studies in your area, you won't find Lymes, so try other things, like depression, fatigue...etc. I noticed the Psychiatrist department at the University is also the Neurology dept. I'm thinking those are more apt to look at the whole picture. Good Luck Guys!!!
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Old 10-18-2011, 06:40 PM   #7
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

With my ANA and antibodies as high as they have been, I don't really see the point into looking into lyme disease. I've also had relief with autoimmune disease medications and MS medication but now I'm hypersensitive to freekin everything.

 
Old 10-18-2011, 06:46 PM   #8
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

I truly feel your "pain"- Maybe school will help take your mind off how bad you feel.
I find myself completely exhausted trying to explain to the medical community, and also to family/friends how I feel from day to day. My husband can clearly see when a flare is coming on. It use to be that it would last days. Now it comes on so quickly, but does not last as long after taking my Ultram & Motrin.
I have a positive ANA as mentioned before, extremely elevated EBV (at least it was in 2007 at the cleveland clinic) - Brain scans slightly abnormal with one to two lesions. I had a lung surgery back in 2003 that left me in excruciating pain for over 6 months due to some nerve damage. I have even considered that maybe all this was due to the stress of this prior surgery. Physicians disagree.
You have been on this path for so many years. I completely understand how you must feel. It scares me to think this may continue for many years to come. I feel like reclusing after five years of this . I am exhausted with having to repeat my story over and over, people do not understand. Doctors if labeling these conditions to be CFS/Fibro, without significant clinical testing, should at the very least educate themselves to discuss a treatment plan and help individuals understand that they matter..what they have matters.
I agree with you in regards to the Rheumy docs. Here in Vegas it is known that there are "no" good ones. I have heard that from the mouths of many of my specialists.
My neurologist was thinking this was MS as well, yet, because I do not react to the neurological workup they do, she is not convinced.
My current doctor GP-is kind and always willing to try something different. He is new to my case and as I told him, miracles I am not looking for. Just someone who listens. We are now trying an anti-viral drug, just to see if it helps.
I pray for you, for me, for the thousands/millions of sufferers that may feel as if they have nowhere to turn. Congrats to you on taking that step for school. Pat yourself on the back...Kim

 
Old 10-18-2011, 06:55 PM   #9
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

Never again, If you are getting relief I'd say you are ahead of this game. Just out of curiousity; what meds are helping you? I am 6' tall and have to take a fraction of most meds because I am so sensitive to most. And many don't work at all or has an opposite effect.
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Old 11-10-2011, 11:04 AM   #10
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

I am feeling badly for all of you and I have similar things going on.

I have suffered for 11 years since having a spinal surgery at age 24. I also can not accept the lame answers I'm given and would like to go to Mayo for answers.

I have developed the hypersensitivity to drugs that you describe. Mine has developed over the last few years. Do you all know what causes this? It's so frustrating. Everything puts me to sleep, gives me headaches, or gives me the mile-long list of side effects like blurry vision, dizziness, etc. What is causing this?

It's not just meds...I can not tolerate ANY alcohol at all now (like if I wanted wine at a wedding or something). I flare up with even a sip. This started about 4 years ago. Do you have this? I guess so, since alcohol is a drug.

Do you drink caffeine? Sugar? Are you sensitive to it? I am addicted to it. I often wonder if I would improve if I stopped it, but how do you get anything done or get out of bed without a jolt of caffeine and sugar?!!!!

Someone mentioned a cycle of pain with one of the viruses. I have found a relationship between my menstrual cycle and my fatigue/pain. When I ovulate, I flare up terribly and get soooo tired I can't do ANYTHING or go anywhere. It's bad all the time, but at that time I have one foot in the grave. It lets up slightly after I start my period. I have tracked this for a year. Either it's....one more problem I have that is just making fibro and fatigue worse or it's a new hypersensitivity to hormone changes?...Or do I have some disease that affects hormones? OR maybe I have this virus that you have and it's just a coincidence that it flares up for 2 weeks out of the month. Ahhh!

 
Old 11-10-2011, 03:35 PM   #11
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

School is great. I love it. Can honestly say I don't feel so useless anymore. Plan to push myself into working, I don't know how that's going to work out, but I just hope it does. I haven't had a job for 18 yrs.

My neurologist diagnosed the connective tissue disease the other day, he let me know under no circumstances that I have it, he said that doesn't show up in people who don't have it (my ana & antibodies), and he said where plaquenil helps me some proves it.

That's one of the medications that helps, I have to take it at bedtime to avoid side effects. I also take neurontin and it helps with some of my pain. I get toradol for migraines but don't take it that often. That's pretty much all I am taking right now besides an antiviral for possible HSV-1..

Now it's definetly helping, I've had a positive test on an active infection, but tests for past infection are always negative. Test is useless but it's still likely that I have it..

I don't know how you all cope when you get a viral or bacterial infection but that is where my major flares come from.

3 days before these blisters broke out on my lip, I was having muscle stiffness when waking up, neuropathy got extremely worse, constantly peeing, kidney was burning, felt like my lung was burning (or it was a muscle, IDK), my hip was burning. My fatigue worsened.

The doctor I saw for this thinks I'm nuts, well I think I heard him say that when he left the room. He doesn't believe it's making me sick (the STD, if that is what it is), but it does every time I break out with it, and it's every 6 weeks. He said it had to be something else. I didn't even tell him the majority of the problems I was having. Why bother?

I tried to stop taking all of my medications from before when I was having all of those side effects. I actually did stop, but I slept 20-22 hours a day, had no choice but to start taking them again. Even if I have an autoimmune disease, why the snot would it make me sleep that much? I'm not anemic.

 
Old 11-11-2011, 07:12 AM   #12
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

Quote:
Originally Posted by iwillgtwell View Post
Everybody should watch the documentary "Under Our Skin" about Lyme disease and the politics that go with it. It sure opened my eyes as to what is going on.
Iwillgetwell,
I'm just now learning about the Rife Machine, your link got edited out. I found one that advertised for "under $100" and says its a variation of it, and used with software, a computer and a stereo. Would you have time to look up that link and see if you think it would work the same way as the Rife Machine? Also, I've been learning about parasites, and how the "co-infections" of Lyme are a big part of it all. The rife is supposed to get ride of all the critters. Roundworm showed up on a test, and I was treated for it, but am learning I hadn't gotten rid of it. This is all starting to make sense. WHY is it all such a BIG secret....So many people are so very sick. If it wasn't for boards like these, and people like you who are willing to share your plight...there'd be no hope of figuring out this "epidemic". Thanks so much!
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Old 11-11-2011, 07:40 AM   #13
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

NeverAgain, Hang in there! What are you taking in school? This journey we are all on is like a school report..a thesis...we WILL figure this out!! I just feel it in my bones. Parasite eratication is exciting, you can actually SEE results as the parasites leave. I'm learning more about the Rife Machine to make it go faster. :-)
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Old 11-11-2011, 05:36 PM   #14
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Re: chronic fatigue syndrome + fibromyalgia, I really want to help you

I'm getting my degree in medical assisting. My dr said he'd hire me when I'm done, my son said he would too after he finishes college to be a dr.. So either way, I have a job lined up.

These courses are online, all but 2 mths of.. So it's not really giving me an idea of what it's going to be like once I actually try to get out every day and work..

Why are you all talking about parasites? Yuck.. There's a horrible thing with this illness, makes you wonder the ten thousand things that could be wrong, you wonder one thing after another, until one day you finally figure it all out, that took me 14 years to do that, and I still have some confusion as to why.

 
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