Reversal for FIBRO

I posted this earlier but I want to start a new thread for you guys so this is a repeat of "tell me about fibro". Some disable people that may have been misdiagnosed as so many of us have should read this, so here it is again:
To All You Gals..................great news and a great book for us to follow or at least think about.

Sorry, again I feel off the face of the earth. This time DH decided to jump on the bandwagon.
I will address his illness later new info on fibro, very new it's been out for awhile I just chose to ignore it like a fool.

The book "what your doctor may not tell you about Fibromyalgia" by R. Paul St. Amand, MD and Claudia Craig Marek. The revoluntionary treatment that can REVERSE the disease.

They use Quaifenesen. The author, male, has had it being a dr. he developed this breakthrough. Not many people know about it. I haven't finish this comprehensive book but it seems that Salicylates contained in makeup, lipstick and many over the counter everyday things we use contain it which causes more trouble for us. I will address this treatment with my fibro guy when I see him.

Due to Dh's illness I had to cancel both appointments with my fibro guy in Phila but I will be going as soon as he can drive and I get an appt.

This book is amazing just amazing. There are symptoms out there that I didn't even know exsisted like vulvar pain caused by acid. Therefore, Vitamin C can cause this condition. So even some of the natural things are not good for us. Please Please I urge you to get this book it is 15.00 at Barnes and noble but a search on the internet may find lower cost or go to the libraby. They go into such detail on Fibro Fog which has been one of my biggest problems. I've been taking DHEA out of desperation. I know it can cause breast cancer I should be taking the K-DHEA which I will immediately because of the poor reading on my mamo.

There have been total reversals of this disease if you follow the regiment which for me will not be easy but hey, this Fibro and CFS is not easy. BTW the DHEA has surely helped my cognitive state. I can almost successfully multi-task again. Recently, I've even been able to follow the stock market which was totally out of reach for me. That was my livelihood for 25 years. Now maybe I get back all the $ I lost with the grace of God and this bad stock market.

I lost everything due to this illness and many friends along the way. It is diffcult for anyone else to understand. Even my sister who has Lupus can't understand why I was sick from October til Jan. and Again for Easter. So I missed our Christmas Holiday and was late for Easter Dinner only to listen to my brother in law call me ignorant for making them wait. Even the family doesn't understand.

That's just the way it is but I'm telling you all NO MORE. GET THE BOOK PLEASE!

I could write all nite about what he addresses but for now go to some of these sites which are in his book:

Fibromyalgia Wellness Group in NY www.Gold222@aol.com support group
The "Guai Support Group" this is a private semi-moderated support group for anyone intersted in the quaifenesin protocal and hypoglycemia. Also provides Salicylate information To subscribe send and e-mail to LISTSERV@MAELSTROM.STJOHNS.EDU and type Sub Guai-Support (your first and last name in the body of the e-mail. It was founded by Tesa Marcon in Oct. 1997. 600 +members in all stages of recovery.
www.geocites.com/HotSprings/Spa/5252 "Official" support and info for Guaifenesin protocol. Site contains updated cosmetic lists, success stories, doctors lists, etc. Appropriate for doctors and patients.
The authors websit www.fibromyalgiatreatment.com. Guaifenesin treatment jpdates, refferal lists, and links
Fibromet by Anancy Medeiros: www.csusm.edu/public/guests/nancym/fibromt. A patient oriented web site with folksy look. Offer video tapes and information for sale.

There are videotapes avail. at differnt sites.
Success stories with this new treatment
Guaifenesin Sources
This book even provides a list of cosmetic company customer service phone #'s and web sites.
The resources section in the back of this book goes on for pages. I have provided you with a place to start even before you purchase the book which I am sure you all will.
Hypoglycemia is a problem for us www.hypoglycemia.com or
Low carb diet is necessary recipes: www.lowcarb.com
Low carb resourse center: www.thinner.com these are just a few I don't want to overwhelm anyone. If you cannot reach a site you want please e-mail me and I will check it out for you. I am too tired to proofread this.

As for DH:
His homosteines were 21 the high is 11. His blood pressure was off the charts and we was scheduled for cataract surgery. He had the surgery on Monday and is doing fine. I stopped taking his pressure it was driving us nuts with the digital. I will be trading in for a regular one. Through this my pressure went balistic and my pulse................. forget about it. Anyway, now that he's taken care of I had a bad mamo reading and must go for a sonogram. I am in good hands though finally. The eye surgeons wife took me under she wings. She's a dermatologist and very well connected with some of the best dr.'s in NY. I always said, "it's not what you know it's who you know". I go for the ultrasound Tuesday and it is inevitable I will need surgery AGAIN!

I haven't been on DG for sometime so please if you need any further information e-mail me directly and I will get back to you in a more timely fashion.

My garden is growing in spite of all the problems. I have been so neglectful with all that has gone on since April but God is good and doing a lovely job. I have lost many plants but now things seem to be coming back. My bulbs are still sitting they will probably bloom in the bags but we have to address what is necessary at the time. Right now our health seems to be the neccesity of the months or should I say months.

God Bless you all and have a great summer. I hope to be around now and than.
Carol

Carol,
This does sound like great news. My older sister has fibro and I will tell her about the book!!

I too have been told I have Fibes. Well, I was reading what you had wrote so i tried to find info on quaifenesen. Don;t know what that is. So. did a "google" and this above paragraph you wrote, is THEE only thing that comes up! how about that! You are a google!!! KEWL. then when you click on it. it says not found on this server. but still!!!!p.s.
Was just reading more on your paragraph . I am the eldest of 3 . I have the fibes. and the second child of 3 has lupus. Odd that you have a sibbling with lupus too. (things that make you go hmmmmm)

This message was edited Wednesday, Oct 30th 8:08 PM

This message was edited Wednesday, Oct 30th 8:09 PM

Guaifenesen is the ingredient that makes Robitussin work. It didn't help my Fibes symptoms at all when it first broke several years ago as a cure, but might be useful for some others. I have read so many books by so many seemingly knowledgeable experts about so many conditions, and all of them have their believers. It reminds me of the Vitamin C craze years ago. To listen to the believers, you would have thought it could cure anything and prevent the rest, but turned out to be vastly overrated for most people. Vitamin E was another cure all. So many of these things sold books and won over thousands. Just tonight, a friend brought me a book about the wonderful things coral calcium can cure/prevent. I shall read it, with a mind wide open. The instant my friends learned I had cancer, almost two years ago, I was swamped with such material, and I am sorry to say I found little of value in the regimens most suggested. It would be great if I could eat my way around this cancer, fibes, CFS, IBS, dry skin, bad hair, weak nails, big feet, fat tummy, and on and on. But I am so overwhelmed with cures that don't really.

Have you heard that Aspertane causes this. Also lupus and MS. We were sent an article by the secretary to our congressman. Will be glad to share with any one that wants it. email me. Bobbie was havng a real problem with her ankles and feet swelling and after she received this article she quit drinking Diet Dr. Peppers and it immediately cleared up. We were amazed becuse she had been having a real problem and couldn't even get her shoes on because of the swelling.

I have fibro and have never drank any aspartame since it gave me headaches when it first came out in soda pop.

I have fibes. Drink about 2, maybe 2 sodas a year. usually white soda... use only sugar too.

You should also read "Fibromyalgia and
Chronic Myofascial Pain: A Survival Manual" by Devin Starlanyl. It was an eye opener for me...similar to the book you are recommending. I have Myofascial Pain Syndrome, not Fibromyalgia, but I can definitely relate. Good Luck to you!!! You are not alone!!

Here's the link http://www.sover.net/~devstar/
yvana :)

I know from my own personal experience that coral calcium can and does help the fibro pain.

My physician was successfully treating me with Elavil, which helped me sleep and helped eliminate trouble with restless leg and depression.

And Vioxx, a COX-2 inhibitor, which is used for arthritis also, helped me a great deal... and got me off the cycle of constantly popping ibuprofen which eventually gave me serious gastric problems.

Hot tub soaks were a huge help with fibro for me, too... and believe it or not, exercise... and avoidance of nightshade vegetables (green/red peppers, tomatoes, potatoes, and eggplant and tomatillos) helps the body to be less a victim to pain as it goes through the body.

Also, a strong multivitamin helped me, I think it helped my brain fog or fibro fog, which was just so intensely irritating...

I do not have fibro anymore, it went away when I was put under general anesthesia for my knee surgery... Praise God!

Love
Janie

Here's a little info on guafenisin - It's the generic name for Humabid. LOL, Also DH has me drinking water with a little apple cider vinegar and honey in it. Seems to help, but if you try drink it quickly UGH! Nasty!!

Would somebody give me more info about Guaifenesen? My husband has Fibromyalgia. Thanks.

Somebody in this group with eye problems?

Here is a very informative article on fibro and guaifenesin

hope it helps

Janie

http://www.sover.net/~devstar/guai.htm

Thank you Janiejoy.

Both my mother and I have fibro, it really sucks when people claim you are faking it. That you're lazy and stupid.I have gotten to the point that I tell them, "when you walk a mile in my agony ridden shoes if, if then you can manage enough "umph" ta carry on a halfway decent conversation, then and ONLY then can you tell me like it is." Ugh, people make me so mad :~(. Hugs to all the Fibro Sisters :~).

Janiejoy, I love my new prescription of Vioxx! Finally my insurance will let me have it. Seems they don't like to pay the price and you have to try 6 other NSAIDS before they will agree that you need the Vioxx. sigh

I have tried the guaifenesen but it didn't give me any relief so I am back to traditional drugs.

I agree crimson, you need to stick to your guns and tell people that they have no idea what pain you are in and you have no idea what pain they are in for other stuff but you would gladly swap places with them for a day or two.

Aimee, I was told by my rheumatologist that IBS is another symptom of Fibro. He seems to also think that my elbow pain is fibro and not me needing an elbow replacement. I hope he is right.

Yep, IBS is definitely a fibro symptom - I take Aciphex, which helps a lot - have not had trouble except in the presence of bad food since I began taking it... amazing!

Fibro can hurt ANYWHERE --

Can you get into the water? Nothing helped me more than getting into the water and being weightless for a while... whether it was a hot tub or pool... what a blessing that was for me. and remains a blessing!!

I completely agree with the water therapy. I can't wait until we have a hut tub put in but i'd settle for a pool of some sort even an above ground just to float awhile helps a lot. I'm glad vioxx is working for some of us it doesn't help me much neither does the guaifenisin. However, I think my hernia is related to my fibro because of the IBS (I have the constipating kind not the loose) anyway the dr's have given me kristolose(sp?) and it seems to be helping some. I go to the surgeon Tue.about the hernia and am not looking forward to that at all. I agree that most people think we're just lazy or whinny or something. I can't count how many times my own extended family has said hurtful things like everybody has pain but some of us handle it better than others. I'm glad they don't suffer like I do but wish they could understand and not be so critical whenever I can't do the things they want me to do because of the fibro. I was diagnosed in 1997 and since then I believe they are starting to realize that something is wrong with me and it's not in my head but I'm not sure if they'll ever be able to understand the full scope unless they've been in my shoes for awhile. And I think we all feel the same in this regard but I wouldn't wish this thing on my worst enemy. So I'm trying to be understanding about their lack of understanding and not let it get to me. It's been very reasurring to hear that ya'll have some of the same problems as I do and that I'm 'not the only one' who feels like this. Thanks for sharing, Tracy

I'm bumping this up because, I hate to admit it, but the fibro pains are sneaking back in. When I first came out of surgery the pain was totally gone and now I am starting to notice pressure points hurting again ... doc says that it's because of the other extreme pain in other spots ... and last night the restless leg was so bad that I was up for three or four hours without a wink! Ugh! SOoo frustrating.

So I go the 25th back to the doc and will unfortunately probably need to go back on Elavil for the restless leg and sleeplessness. I can't take Vioxx anymore because it made my feet and legs swell up like balloons... so I don't know what the next step is for me.

It is comforting to know we are not alone, isn't it?

Guaifenesen will not help you if you don't follow the list of things you can't use while on it. There's a long list of creams and things that contain salicylates you can't use if you want the Guaifenesen to help you. Also a good thing to try is http://www.alexandertech.com/misc/chronicpain.html
I was disabled by Fibro, MPS and CFS and had to give up a very good paying job. Gardening has been the best medicine for my sanity and Fibro. The more you can have your mind on other than Fibro the better you can be. The more you move around, the better and sitting at a computer is very bad medicine for Fibro. I know it's hard to have your mind on other things when you are in such pain but I'm a firm believer in if you give into it, it has you. I'm still disabled but I'm doing better now than ever.

I was finally diagnosed with Fibro in Jan. of '96 I think it was. I've had it since I was 5(now 61) and have been diagnosed with growing pains, childhood rhumatism, weak back/congenital weakness in spine, all in my head, etc. Some doctors were sympathetic, others really horrid to me. I have one now who is very kind. Fibro, CFS, LUPUS, Arthritises etc are all auto-immune disorders which means that our immune systems have turned on us. My lungs(Interstitial Lung Disease with resulting hypersensitivity pneumonitis) and now my heart are also affected. No one diet, medication, exercise, etc. works all the time. Some work for a while then stop, others never do much good from the start, others have always worked to some degree. I take a good multivitamin, MSM, Glucosomine/Chondrotin, Vitamin E(mostly to keep my veins clear), Vit. C to promote production of connective tissues, and a lot of calcium to counteract the loss of calcium caused by Prednisone. I also take Vioxx for what is now thought to be R.A. in my hands.

Reality is that there is no ONE cure for these autoimmune disorders. Our bodies are unique and what works for one person may or may not work for someone else. It is a very personal battle.

The one thing I hang on to constantly is that I am an child of GOD's and my life is in HIS hands. Nothing will happen to me that HE and I cannot handle together. HE will not allow any burden to come on me that I cannot bare if I will but lean on HIM.

This message was edited Oct 15, 2003 9:03 AM

I just came back from the Neurologist and he is putting me on Neurontin for my fibromyalgia pain. I start with 300 mg at night and will eventually titrate up to 300 mg three times a day.

I know Lani has shared that this has been a Godsend for her - anyone else care to share if this has helped them?

Thanks for sharing!

Love
Janie

Sure was a Godsend for me. I am taking 800 mg. every 12 hours now. It gave me enough pain relief that I could function in a somewhat normal fashion again.

Also now am taking 20 mg of Paxil which has removed the frantic edge of the pain where I was always thinking of how much I was going to hurt after I did an activity or got up from bed. The Rheumatologist wanted me to take 40 mg of Paxil daily but it made me too sleepy.

We also tried Dopamine but if you want to talk about SLEEPY that was the drug of choice for that. I would get up in the morning, go to the bathroom, take the pills, eat, sit down and find myself waking up about 3 hours later. My afternoon pill was the same way. I quit that pill before I even was able to observe any benefit of pain reduction.

I figure there is a happy medium of my pain reduction and if a drug doesn't "fit me" and my lifestyle then I won't be taking it.

Hope this can help others. Hugs, Lani

Lani,

That is such a great way to describe it - the frantic edge of the pain... wow. Hadn't realized as yet how it might be going to feel because I hadn't had an edge to the pain till I had taken the Neurontin for the first time (yesterday night).

Thanks for sharing... I'm just amazed at the change in how I feel on Neurontin. Actually, they are finding out it helps a lot of things they didn't expect it to help.

Check out this link:
http://home.tampabay.rr.com/lymecfs/nfaq.htm

Janiejoy, could you please tell me, what the name of the substance is in Neurontín. I live in Germany and I might be able to purchase it under a different name. Thank you.

http://www.rxlist.com/cgi/generic/gabapent.htm

Monika, the name of it is gabapentin. The link above takes you to the prescription information about it.

You might find more info from it's manufacturer, pfizer.

www.pfizer.com

Good luck... it's been a great help to me, although I am feeling I probably need to titrate up to more than I am taking right now, I am sure it's going to be the answer for me and all the chronic pain I've been suffering.

God bless...
Janie

Monica,
I sure hope it helps you if you are suffering from Fibro pain.

Lani

Thank you very much. Pfizer is a well known company in Germany. I will click right away on the link.

It is not me, who is suffering from FMS, its my husband. He has it for 17 years.

I will let you know, if it is available here.

Its is available in Germany but only for neuroleptical uses not for FMS, which means, that the doctor will prescribe it and we have to pay full for it. The price for 100 tablets is EUR 330.--

monika, maybe you can purchase it less expensively online?

monika, maybe you can purchase it less expensively online?

http://www.canadiandrugstore.com/shopdisplayproducts.asp?search=yes

Do you have anyone here in the US who could purchase for you here online and then send it to you somehow? THere must be a way around it. Especially when it says you can get it online in 300 mg tablets for $95 US.

Wow. What a discrepancy. That is outrageous. These kinds of things make me upset because people suffer needlessly.

I'll pray there is something that can be worked out for your husband to get the medicine he needs for less money.

This message was edited Dec 20, 2003 1:34 PM

Thank you very much for your help.
Fom next year on, the german goverment allows the purchase of medication in online drugstores. We will use this chance.

Great that they will allow it very soon. I will pray that the neurontin will help your husband a lot.

Lani

I find all of this discussion very interesting...have a friend that has fibromyalgia and she has a relative with lupus. And, my grandmother had lupus.

When she was first being diagnosed and we started comparing symptoms, she convinced me that I should get checked out for it but I didn't have insurance. This was back in 1999?

I did a search online. I found a shocker of a site. It blew my mind. The only problem is they change the pages around continuously and you have to search deep to find past info only months after they post it.

Anywho, it was the center for disease control website for "Stealth Viruses".

Immediately, I'm thinking aids and hiv. Boy was I in for a shocker.

Rhuemetoid Arthritis, which I have, Fybromialgia, which I have on and off symptoms of, CFS, Aids, HIV are all stealth viruses.

What was worse is they said there was a conection between them! There was even a little blurb in there at one time that said that the arthritis, being a virus, was communicable between family members.

So, that information was there long enough for me and her to see and when she reported it to her doctor, they moved the info. I found part of it and then lost it again. Seems they don't want ordinary people to find the info.

Steph

My heart goes out to you with this AWEFUL illness, i have MS and am in pain all the time. My heart felt a connection when I read about family not understanding. They are shocked at first when diagnosed then eventually they are used to you with the illness and wonder what your problem is! My husband wonders why one day you can do something and not the next, hey I can't predict how I will be hour to hour! I wish people could feel what we feel and they would understand, not that I would wish it on anyone. I have two friends with Fibro, one was just diagnosed with lung cancer, she had breast cancer 5 years ago, she is not well. My other friend, whom has a sister with MS is having a hard time as well. We all have burdens and Thank God we have each other. My only brother has Schizophrenia and MS is just fine for me. Your mind is everything, even if it has lesions, but working clearly is a blessing! Bless you All, Tina

Steph, you are in my thoughts and prayers daily as I know that your affliction is not an easy cross to bear.

As far as the stealth virus that you talk about I found many pages on it by just doing a google search for it. I haven't had time to read much about it yet but I will.

Tina, my heart skipped a beat when you said you have MS. I know what you are going through as my dearest friend was diagnosed with MS a few years ago and her husband also doesn't understand all the implications of it but thankfully she is in remission right now and is almost fully functional thus far other than the pain and eye symptoms of it. You are right that we all have burdens and that you can always find someone else who is worse off than you.

One thing that I have learned is that you never know what day will be your last and to live each day to the fullest.

I will keep you and your friends and family in my thoughts and prayers.

Hugs, Lani

Thanks Lanie

Steph

I just had a thought and the idea is a little scary. After doing a search on google as Ponditis did (first time in ages I have looked this up) I discovered something that rang a bell from a recent PBS show.

They keep talking about viruses combined with bacteria that cause cell damage in CFS, GWS, RA and Fibro.

The show I just watched had been on gene splicing and genetic engineering. They talked about how when they first started out and the discovery was made that they could splice genetic information into bacteria and get it to replicate that there were a lot of enthusiastic idiots out there that knew a lot about science but nothing about containing bacterium and diseases! They were ready to play around and test all kinds of 'splices'. In fact, there were evidently some experiments that went on before the disease control guys made them go to lectures on the topics.

In fact that is how the majority of insulin is made today. The gene that creates insulin was spliced into bacteria to make it multiply.

Now, since all these weird diseases came along after this 'new knowledge' whats to say that one of those idiots created a virus and accidentally let it loose?

I mean what does a virus combined with bacteria act like and how is it cured or contained? Is a virus that is combined with bacteria actually a virus OR a bacteria?

Is there any barrier to its growth or spread? What happens when this same proceedure is used to modify our food systems or unbeknownst to us used in medications for us or animals?

Evidently, this stuff is communicable not only to family members or unborn children but to family pets. What happens when a farm worker or a meat packer or such has one of these diseases and a cold? If they sneeze, do they spread it? I'm wondering about this stuff because as I said years ago it was stated that it was communicable but nobody talked about it. Now more and more people are coming down with this stuff.

I was in my late teens (now 44) when I first came down with what they called Jr. RA. I was crippled up so bad that they had specialists come in to see what was wrong with me. Over 100 xrays were done. Every joint in my body was affected. It lasted for a couple of years and eased off.

I went on to do construction work, landscaping and all kinds of strenuous work. Not a sign of it for such a long time. Now, it is coming back again with a vengeance. I refuse to give into something that might have been manufactured!

Not only that, I ask...why is it that most of this stuff just seemed to pop up out of nowhere? I was in AA and suddenly many of the people I knew were becoming disabled with this stuff. There's got to be answers I wonder what the right questions are?

Steph

Steph,
I understand what you are talking about some but I also know the majority of us are living much longer and with far better health care than generations in the past. We are living 30 years on average longer than people in the early part of the last century were. With all the diagnostic testing that is available now I am sure that things that once were not even looked at are now being diagnosed as some of the diseases and afflictions that you mention. In the early years of my life I can remember people living with or dying of things they called "consumption", "palsy","growing pains", and many more terms that were used. With the advent of antibiotics we now can survive many things that would have killed our ancestors and I for one know that I have lived through at least three things that I would have died from if I had been born in a different day. My Mother would not have lived to even have me if she had been born 10 years earlier. Even my Dad would not have lived past age 50 and he made it to 84 and Mom is now 91.
I don't know if any of this makes sense but I figured I had to write something. lol

Well, I suppose "some" have better health care, it is available for those with money or good benefits. I know a whole lot of people who don't have any insurance. And then there are those who have some insurance that only covers minimal tests when something goes wrong. I would say on average that less people have better health care today than they did say 15 yrs ago.

I'm sure that there are less people dieing of serious health problems if they are taken to emergency rooms, but there are many more people who just run down after years of no health care at all. Their health fails not from a sudden onset of some illness or medical emergency but over a period of time with multiple causes that went left unattended.

I guess living in a state where the poor can get health care and next to another state where they can also get health care I hear nothing but good stories about people living well beyond their expectations of a few years ago. Lucky that way I suppose. Then having two top hospitals within an hours drive from us must also contribute to the good lives saved. Here on average I would say that health care is better than 15 years ago.