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Avatar universal

cause of diagnoses? and med advice, PLEASE HELP


I came down with the chicken pox at age 32 and was hospitalized for a week, i also ended up with pneumonia at the same time, i was quite sick for sometime, in SEVERE pain (i never knew chickenpox was painful) and had a fever so high i was delerious(sp?) to the point that i took so much advil and tylenol the night before (not remembering that i had already taken 800 mgs of advil, so i took 800 mgs more, and did the same thing with the tylenol, repeatedly) being admitted the the hosp. that i made myself even sicker...i remember this day well, i actually got up, got dressed and thought i was going to work, my husband giggled and asked me what i thought i was doing and where i was going, as i sat on the front porch in the sun, in 93 degree weather, with a sweater, long pants on and covered with a blanket just shaking from how cold i was.  well needless to say, i have been diagnosed with FMS/CFS and i am on the severe end of the spectrum...i accepted my diagnoses IMMEDIATELY, as they could find nothing wrong with me, RA runs in my family, as does eczema, and both my parents contracted lymes disease while living on Long Island, NY where it is rampant.  i was tested for all of this along with lupus and some other things as a precautionary measure...so FMS/CFS is my diagnoses. and it was with GREAT relief when i heard it, as i was sick to death or hearing that it was because i was depressed, or needed to lose a little extra weight, or get more exercise...but it didnt matter, i would lose some weight, start a new antidepressant, started walking...made no difference, except made it worse when i "walked too much"  doctors even set me up with physical therapy because of the stiffness i had in the mornings, my husband literally had to and still does on occasion have to help me up to a sitting position in the mornings, IT STINKS!  but since being diagnosed, i am NOW able to deal with the symptoms and learn about it all i can.  and to also know that my limbs werent going to just start dropping off at any moment with no explanation was a plus!...i am also a licensed cosmetologist and Realtor, constantly being exposed to all kinds of chemicals in both professions while i was working...my symptoms are on the severe end with debilitating flare ups...i am also a recovering addict with suboxone treatment in hopes of getting pain relief as a benefit from the suboxone, which is working now as i upped my dose....
now that you have some of my background...is it possible that all these factors played a role in my FMS/CFS to be on the severe end of the spectrum, or does that not have much to do with it?
i know your not doctors, but also know you all know your stuff, any insight would be great...

My current medication regime is:
2700 mgs of neurontin daily, 1 mg of klonipn, 90 mgs of cymbalta, 25 mgs of amitriptyline, and 12 mgs of suboxone.other than the sub, is this a normal medication regime?  should i try other meds?  should i stop taking any of the meds i am on? are there other meds that people with FMS/CFS take that i am not on or shouldnt be taking???
please, any advice or suggestions would be greatly appreciated...i am sooo sick of hurting and not living because of the pain...i am in the middle of another flare right now and i seem to be getting them more often now and dont know why?  does anybody know whats going on with me?
please, help and advice needed ....i am really hurting, i physically feel like my body is dying...
22 Responses
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Avatar universal
Forgot to mention that when you have an Epstein Barr Virus (EBV) test, you must make sure your doctor orders a quanitative analysis which actually shows the titer values, not that test that simply indicates if you are positive or negative. Then your doctor actually has to know how to interpret the titer values...It never ends!

I had an EBV test and it came back negative.  I thought, how can that be because I had mono. in my teens??? The lab did not do the right test even though my natural practitioner ordered the correct test.  Now I have to be tested again.  

It is ashame us folks with fibro and chronic fatigue have to convince the doctors to order tests for us. That is why I switched to a natural healthcare practitioner. She is also a nurse practitioner and takes me seriously.

Warm Regards,

Ree4tu
Helpful - 0
Avatar universal
The Lyme Disease test my natural practitioner recommends is by Bowen Labs  in Florida: www.****.*** - I believe it is now called Central Florida Research, Inc.  They have several different types of Lyme tests. I will have to check to see which one my natural prac. recommends. Check out the website for more info.

Thank you, PlateletGal, for the very comprehensive response.  I am curious, did you actually have the testing for mycoplasma infections or are you just treating it based on your symptoms?  I would be interested to know how many of us would actually test positive for these infections.

Ree4tu

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Avatar universal

I started out with Dr. Jernigan's "neuro-antitox II basic" formula for approximately 1 month. Next, I started taking the Borrelogen along with the neuro-antitox. The Borrelogen addresses the lyme bacteria but it also has the Virogen added to it and the Virogen addresses viruses. I had a tick bite a year ago so I figured this way I would be covered. Next, I will do the Microbojen. The length of this treatment protocol, I believe, would depend on how ill you are and how long you've been ill. I'm making an educated guess that the longer you've been ill... the more intracellular bacteria you have.

Anyone who does this needs a physician overseeing their care. There are some people I believe, who may not even need the Microbojen and only need the Virogen. There are other MedHelp members here on this treatment who will tell you that even though this is a natural treatment, you have to start out SLOWLY and sometimes take a LOT less than the directions on the bottle... you want your herxing (detoxing) symptoms to be tolerable.  I originally started out with on a low-dose antibiotic protocol but then switched when I heard from people on Jernigan's were also having success. Jernigan's formulas are not only herbal... but homeopathic as well. I am impressed with the herxing symptoms I have been having... because that means that his formulas are working and killing the stealth pathogens that are making me ill.

There are other antibiotic protocols, including Dr. Garth Nicholson's... which I believe, is a shorter treatment. I'm hoping to ask him about that when he joins us here early next month to answer our questions. Dr. Garth Nicholson also gives a link on his website to those people who cannot tolerate antibiotics, recommending a natural product for these people that kills mycoplasmas.

As far as lyme testing... tough question. You can be tested several times and have a false negative result. That is yet another reason why I am on a protocol that kills not only mycoplasmas, but the B. burgdorferi bacteria as well.
Helpful - 0
529159 tn?1224991026
Can you tell us what the RIGHT Lyme disease tests are.  I FINALLY convinced my doctor to order a Lyme test along with EBV and would you believe the lab messed up and didn't even do the Lyme test.  I have to go back to have the blood work drawn again. I would like to know what test to have performed before they stick me again for the umpeenth time!  Thanks
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Avatar universal
Dr. Jernigan's website has all kinds of forumlas. Microbojen is one of them and Borrelogen is another.  I believe the first is for viruses and the other is for bacteria like Lyme Disease.  I forwarded the website to my natural healthcare practitioner for her to look at the products.  I would like to know if they are safe.  I also don't know which to start with because I am uncertain at this point if my problem is related to viral or bacteria or both.

Ree4tu
Helpful - 0
Avatar universal
Hi,

What's the homeopathic formula you are mentioning? MICROBOJEN?

Is this formula helping even if you are not EBV active when you take it?
I am looking for something to take to get this virus out of my body as it's messing up my life.
Helpful - 0
Avatar universal

I actually took a homeopathic formula that targeted viruses, including the Epstein Barr Virus, and I swear it worked. The following day I felt like I had mono again (sore throat and everything) and then it cleared and I noticed some improvement.

There is another MedHelp member who posts on the EBV board and he took the same formula and he recently sent me a PM... letting me know that his EBV titer had dropped.  Things that make you go "hmmmm".  ; ^ )
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Avatar universal
I forgot to mention if you have a viral issue like Epstein Barr, antibiotics won't work.  YOu would need anti-viral medication, but I am not yet familiar with the anti-virals. A blood test can be done for Epstein Barr Virus.


Ree4tu
Helpful - 0
Avatar universal
I am glad you found my information helpful.

The book title is "From Fatigued to Fantastic" 3rd edition.  You won't regret reading it.  I just started reading it yesterday and I think it is very comprehensive so far.

I agree about the Lyme testing for everyone. My natural healthcare person suggested another kind of Lyme test for me because my standard blood test was negative.  We have to rule out so much and unfortunately things are missed. It is an exhausting process!

Thanks for the kind words.  I hope we all get better!

Warm Regards,

Ree4tu
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Avatar universal

It obviously could be lyme disease, but chicken pox is part of the herpes family (like EBV), so that could point to CFS.

Of course EVERYONE here I hope who has been diagnosed with either fibro or CFS needs to make sure that their physician has ordered lyme testing... and the RIGHT lyme tests because often people will get a false negative result.
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Avatar universal
Sounds like it could be lyme disease.  The testing is totally unreliable.  I would see a lyme literate doctor for an evaluation.
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Avatar universal
thank you...i'll take a look at it...
Helpful - 0
Avatar universal

Here is a discussion that I had recently in the EBV forum about CFS treatments and possible cures :


http://www.medhelp.org/posts/show/617926

I think the best advice is to read everything you can... the bacterial link, the viral link and the latest possible cures. We do have some options.
Helpful - 0
Avatar universal
is there a specific book by Jacob Teitelbaum, M.D. that i should be looking for...
i did a search on ebay and came up with a lot of books by him...
which one do you recommend i start with?
Helpful - 0
Avatar universal
thank you for taking the time to reply and answer ALL my questions...i really appreciate it.
any advice or suggestions are welcome...
going to see if i can get the book online now..
thanks again, you have been a huge help to me.
and i hope your condition improves, i do know stress can be a huge factor and seems you have had your share of it...
hope all calms down for you soon.
get well, stay strong and take care.
W2L
Helpful - 0
Avatar universal
Yes, this past year I have had a flare which won't go away.  Prior to this, I had chronic fatigue and would get a fibro flare on occassion, but it would go away with a day or two of rest.  The only thing I could think of is I was under a tremendous amount of stress this past year - you name it, it happened. Sold house by owner, moved, finished my Master's Degree, started a new stressful job, dog got very sick, husband had to have surgery, then of course I got so sick that I couldn't work anymore.

The other thing I can think of is I recently stopped antibiotic treatment which I was on for many, many years for acne. This is when fibro symptoms appeared to get worse. I even started to get low-grade fevers and swollen glands and joint pain along with my muscle pain.  This was a clue to me something more is going on, but doctors still attributed it to fibromyalgia. It seemed to me the antibiotics where helping to keep whatever it is somewhat under control.

Then after I lost hope with most medical treatments, I started to see a certified natural healthcare practitioner. She discovered my adrenals are insufficient, my progesterone is deficient, my digestion and blood sugar is off, and I am low in every mineral and even slightly toxic in some heavy metals. Evidence that something is throwing my entire body off. Something which doesn't show up in standard medical diagnostic tests.

So I began visiting Medhelp where I learned about hidden infections causing fibro. These hidden infections will wreak havoc on every system in your body.  So now my natural healthcare practitioner believes I may have one of these hidden bacterial or viral infections. While we figure it out, I am taking collidal silver just to see if it makes me feel better for now. There are several types of these infections. Do what PlategalGal suggests and visit the website.  Also Teitelbaum's book mentions these infections and others that are common in fibromyalgia.

Warm Regards,

Ree4tu
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Avatar universal

If you guys are interested in reading about mycoplasma infections in fibromyalgia and CFS patients... you can google, "The Institute of Molecular Medicine" and find their website. The research is easy to read and there fortunately the founder of this non-profit organization will be here in early October to answer our questions.

Helpful - 0
Avatar universal
have your flare ups worsened this past year and this is why your checking into the collidal silver for infection?
sorry,i meant to ask you above...
thanks again..
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Avatar universal
Thank you for answering me, seems no one else can.
but i do thank you you for taking the time,  i have bought a few books that are accepted by the National Fibromyalgia association...but LOL!  have also noticed since buying these books that i need glasses also...so thats next on my agenda, to be able to see, lol!
but i will definately check out the author you recommended.
and keep me posted about this collidal silver if at all possible,
my doctor gives me prednisone when i have a flare up but man, it wrecks my stomach, but does help some IF i can take it.
I also have sciatica and that hits me sometimes at the same time i am having a flare up...those are the absolute worst of time for me...unbearable!
so if you think of anything else that might help, please send me a message...
Thank you again, very much.
i do appreciate it.
Helpful - 0
Avatar universal
The forum leader who goes by the name "PlateletGal"  is currently in the process of checking with Medhelp to see if she can post effective treatments on the health pages of this form (upper right area of your screen).

I am still trying to figure this all out also. I just started on colloidal silver which is a natural antibiotic. It's suppose to kill everything.  It's too soon to tell if it's working. As far as the prescription antibiotics, I believe doxycycline, cipro, or zithromax are used depending on the type of infection. These will only work for bacterial infections. Make sure you ask your doctor if you plan to take any natural supplement because some may interact with medications.

I think the difference between CFS and FMS is that with FMS there is widespread pain or tenderpoints. It seems like they ususally co-exist or in my case I had CFS first for many years before diagnosed with FMS. I treat them as one in the same.

There are good books available on fibromyalgia. Search Jacob Teitelbaum, M.D.
Has all the info. you need to know.



Helpful - 0
Avatar universal
any suggestions on which antibiotic, or does it matter?
also which natural supplements do you recommend..?
i have had this for a while,
but still have so much to learn...
i always THINK i can deal with it on my own.
NOT always the case
i NEED help. i NEED to learn so much

what is the difference between FMS and CFS?
do i need to treat them separately?
Helpful - 0
Avatar universal
You may have some underlying bacterial or viral infection that is being missed in the blood work. It appears that there is a link between fibromyalgia and infections.  By reading your history with illness, I would suspect something like this may be occurring.  Some doctors are treating fibro. patients with antibiotics and their symptoms improve.  I say this because I believe I have a similar problem contributing to my Fibro flare for the past year.  The antibiotic is the only medicine I see missing from your regime.  Some people try an antibiotic for a while and see if their symptoms improve, so consult with your doctor about this. Also, many people with fibro. find that a combination of prescription meds and natural supplements work better.  

Warm Regards,

Ree4tu

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