TVCH FORUMS HOME . JOIN . FAN CLUBS . ABOUT US . CONTACT . CHAT  
Bomis   Quick Links   TOPICS . TREE-VIEW . SEARCH . HELP! . NEWS . PROFILE
FIBROMYALGIA FORUM

The TVClubHouse: General Discussion ARCHIVES: 2006 Mar. ~ 2006 May: FIBROMYALGIA FORUM users admin

  Thread Last Poster Posts Pages Last Post
Archive through October 03, 2005Kstme25 10-03-05  3:59 pm
Archive through October 18, 2005Skootz25 10-18-05  6:26 pm
  ClosedClosed: New threads not accepted on this page        

Author Message
Pamy
Member

01-02-2002

Tuesday, October 18, 2005 - 7:17 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
Thx Vee, great idea!

Mameblanche
Member

04-13-2005

Thursday, October 20, 2005 - 3:50 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
LK... I am so sorry the doc was such an insensitve boob. Probably was busy, and just got down to the business of making sure you had your refills, etc.

I am a very pro-active person, and very adept at making my needs known. <G> (Sometimes percieved as pushy, but ya gotta do what ya gotta do, especially for your health!) So I will bring up my concerns.

In this situation, I might have said either humorously, "Hey, I don't mean to be a pain, (wink), but have you got a sec to chat about my pain levels today?" Or I might have insisted, and said, "I was hoping we'd discuss my pain levels today, as I'm really concerned about them." Or I might have put the screws to him and said, "Look, I appreciate the refills, ect., but we really must discuss my pain levels today, as I am very concerned."

Try it next time, you just never know... :-) I learned a long time ago, that most doctors are in a hurry to get to the next patient. They don't seem to realize we ARE the NEXT patient! Actually we're lucky, most times our family doc will take the time to chat about our concerns.

Mameblanche
Member

04-13-2005

Thursday, November 10, 2005 - 8:59 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
I'm glad that I went back to Curves yesterday for the first time in MONTHS, but man I am so sore today... I ache so much its not funny. But emotionally I feel soooo good.

Mameblanche
Member

04-13-2005

Tuesday, December 06, 2005 - 12:32 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Me yesterday: Me today:

Ah the joys of fibromyalgia... Just did too much yesterday and am paying for it today. But I really only did a few errands... sigh. Oh well. Shot down any chance of getting anything done today. I ache practically from my nose to my toes! But its still better than emotional aches and pains, which I was wallowing in last week.

Cndeariso
Member

06-28-2004

Tuesday, December 06, 2005 - 12:43 pm   Edit Post Move Post Delete Post View Post Send Cndeariso a private message Print Post    
i have an employee that has this and it helps me understand her by reading this thread. i am sorry for your pain and i do appreciate you sharing.

Suz
Member

10-13-2005

Tuesday, December 06, 2005 - 1:42 pm   Edit Post Move Post Delete Post View Post Send Suz a private message Print Post    
Hope you feel better soon Mameblanche. Not feeling well is the pitts. Hope your day gets better.

Mameblanche
Member

04-13-2005

Tuesday, December 06, 2005 - 8:15 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Thanks so much Suz and Dearie! If you are interested in learning more about Fibro, my very first post at the top of this thread is a copy of one of my published articles where I wrote about my experiences with it.

Still quite achey. Hoping to rally long enough to get myself a massage and get my butt over to my excercise class. Or vice versa. LOL. Maybe tomorrow.

Suz
Member

10-13-2005

Wednesday, December 07, 2005 - 1:23 am   Edit Post Move Post Delete Post View Post Send Suz a private message Print Post    
Mameblanch...very good article and very well written. From reading some of the things you have wrote over time here, I can tell you are a sweet kind hearted person. Hope you have a better day tomorrow.

Suz
Member

10-13-2005

Wednesday, December 07, 2005 - 1:29 am   Edit Post Move Post Delete Post View Post Send Suz a private message Print Post    
Oh silly me. I just noticed it is tomorrow already. Mameblanch feel better today and have a very good one.

Mameblanche
Member

04-13-2005

Wednesday, December 07, 2005 - 3:18 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Thanks Suz! Aren't you sweet to say those kind things. (((SUZ))) :-) Do you also have fibromyalgia, or do you know someone who does? Frankly I am still very achey today, too. But I was feeling blue last week, and am happy to report that I am 90 percent cheerier this week! And that's the most important thing. Aches and pains have nothing on the blues...

Suz
Member

10-13-2005

Wednesday, December 07, 2005 - 5:40 pm   Edit Post Move Post Delete Post View Post Send Suz a private message Print Post    
Glad you are feeling better today Mameblanch. I don't think so. My physical therapist checked for pain points. My Mom had a saying.....Tomorrow will be a better day. I try to remember that and look forward to tomorrow.
So, I'm wishing you a good day and tomorrow. Yep, getting the blues can be quite a downer even for the strongest person.

Xxwriterxx
Member

11-28-2005

Saturday, December 10, 2005 - 2:37 pm   Edit Post Move Post Delete Post View Post Send Xxwriterxx a private message Print Post    
Mame, thanks for directing me to this folder! Your symptoms seem to be so close to MS. Extreme fatigue, muscle weakness, pain after performing strenuous actions... Are you aware of significant differences between the two that would rule the other one out?

I have all the MS symptoms you commonly see on MS websites, except the pronounced Ataxia, where walking is almost impossible. I stumble a lot. I'll be walking along, left-right-left-right, and the foot will not get the message to continue the pattern. Oh, and I don't have paralysis of any kind.

I have the brain fog you've described. I call them hiccups, and they always involve short-term recall. What about these kinds of things: Do you ever feel tiny electrical buzzes? (feels like spider legs tickling) Do your feet or hands tingle or vibrate on the inside? Do you ever feel ice-pick stabs at different locations? Do you ever forget to swallow while eating, or feel goosebumps on your scalp when eating a hot food? The goosebumps actually hurt. These are just a few of the sensations... What about exercise... do you feel like you're about to seriously have a heat stroke when your body temp rises?

Did you note where the pain points are in this thread? That would be interesting to check. My sister was diagnosed with MS after many years and loads of very expensive tests. I haven't gone through this process yet, but assume I have MS too, since my symptoms mirror hers.

Mameblanche
Member

04-13-2005

Saturday, December 10, 2005 - 5:34 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Xwriter, I have some mysterious tingling on the right back half of my head. Its been there for the last couple of weeks. I've been scared sh*tless that it might be a brain tumour or something else 'dramatic'. (oy!) But I never even thought to consider that it might be involved with the fibro/chronic pain. I was under too much stress and emotional upset around the time it began so didn't notice it much til a few days ago. But my dh says I've been complaining that my scalp is sensitive on one side, for a couple of weeks. It has nothing to do with eating. Although one friend asked me if I have dental problems. But its not near my ear/nose/mouth area so I dismissed that idea. Now I do have a VERY sore, stiff neck from sitting at the computer day in and day out, and I've wondered if a massage might be just the ticket, if its simply a radiating pain from my neck. At this point I am PRAYING that is the case. I usually run to the doctor for the slightest thing, and give people heck who avoid the doctor when they are worried about stuff, but I am so scared, that I've been avoiding the doc myself! Now I do have a specialist apt for something else on Tuesday, so am planning to drop by my doc's office the same day. I tend to do my errands all on the same day so as to use my energy on one day, and recoup the rest of the time.
As for for an accurate diagnosis, I'd suggest you find someone who is an expert on all of the spokes on the wheel.... fibromyalgia/chronic fatigue/MS who can properly distinguish between them. And I don't envy you - its so hard to find reputable doctors who know much about FM. At least that was the case as recently as 10 years ago.
In the meantime there is are some EXCELLENT sites for Fibromyalgia:


http://www.fibromyalgia-symptoms.org/fibromyalgia_diagnosis.html

http://www.sover.net/~devstar/
(Devin Starlanyl is the godmother of the FM community. She has it herself, and has written the gold-standard book on the subject.)

http://www.sover.net/~devstar/TrPs_and_TPs.pdf

As crummy as it is to live with FM I do hope if you do have one of the spokes of the wheel, its not MS. I have a friend who has it and she is very handicapped. She uses an electric wheelchair and eats soup with a straw. When I met her 20 years ago, she could eat just fine, and could walk with one cane a couple of blocks. But since your sister has it, I suppose you are familiar with all its vagaries and know way more about it than I do. God Forbid it turns out I have MS, I won't be surprised. Just sad. One thing about my friend though, she is the most stubborn person I know and a great inspiration.

Xxwriterxx
Member

11-28-2005

Saturday, December 10, 2005 - 7:37 pm   Edit Post Move Post Delete Post View Post Send Xxwriterxx a private message Print Post    
Mame, thank you for the links. I'll definitely check them out. Good advice about the type of doctor to seek out. I'm not sure I'm ready for a doctor, though, since I'm living well with the symptoms...no need for any meds at this point.

As for the scalp pain, for many years now I've not been able to brush my hair with a hairbrush because of scalp sensitivity. I style with one of those long-toothed combs we used to call rakes and avoid touching the skin. My scalp feels like it's been burned. It's a nerve thing. Messages don't properly travel from the brain through the nerve to the necessary point (like when a foot forgets to step, my throat forgets to swallow, or I slur a syllable); sometimes the nerves simply misfire (like the ice-pick stabs, electrical buzzes, or overheating). And then there's the MS Hug, that painful, tight, squeezing sensation all around my torso, just below the bottom of the bra... comes and goes.

Appreciate the info!

Xxwriterxx
Member

11-28-2005

Saturday, December 10, 2005 - 7:40 pm   Edit Post Move Post Delete Post View Post Send Xxwriterxx a private message Print Post    
Mame, thank you for the links. I'll definitely check them out. Good advice about the type of doctor to seek out. I'm not sure I'm ready for a doctor, though, since I'm living well with the symptoms...no need for any meds at this point.

As for the scalp pain, for many years now I've not been able to brush my hair with a hairbrush because of scalp sensitivity. I style with one of those long-toothed combs we used to call rakes and avoid touching the skin. My scalp feels like it's been burned. It's a nerve thing. Messages don't properly travel from the brain through the nerve to the necessary point (like when a foot forgets to step, my throat forgets to swallow, or I slur a syllable); sometimes the nerves simply misfire (like the ice-pick stabs, electrical buzzes, or overheating). And then there's the MS Hug, that painful, tight, squeezing sensation all around my torso, just below the bottom of the bra... comes and goes.

Appreciate the info!

Herckleperckle
Member

11-20-2003

Monday, December 12, 2005 - 10:42 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported November 21, 2005



New Help for Fibromyalgia



SEATTLE (Ivanhoe Broadcast News) -- It's a completely new way to treat fibromyalgia and the pain that comes with the condition. And patients on the medication say they can't imagine going through life without it.

A few years ago, Jean Fuller wasn't able to enjoy her gardening. "It was real hard to stoop over like this and weed," she says. A condition called fibromyalgia caused chronic pain in her muscles and joints. "So much pain in the muscles of my arms that I would have to quit."

But thanks to a new treatment, Fuller has her life back. "If I couldn't take it, I think I'd cry."

For five years, Fuller has taken the drug MIRAPEX (pramipexole dihydrochloride) every night. Now, research confirms what she already knows: It can significantly reduce pain and fatigue in patients with fibromyalgia.

"It's completely transformed the treatment of fibromyalgia," says Andrew Holman, M.D., a rheumatologist at Pacific Rheumatology Associates, Inc. in Seattle.

A new study shows MIRAPEX reduces fibromyalgia pain better than any other drug.

"The number of pages I get after hours, the misery the patients have has diminished dramatically," Dr. Holman tells Ivanhoe.

Nearly half of patients who took MIRAPEX reported 42-percent less pain compared to only 14-percent of those on placebo. Overall, 82 percent of patients on MIRAPEX had some improvement in pain.

Dr. Holman says this is the medicine that may provide a completely new way of approaching fibromyalgia. Instead of inducing sleep like current drugs do, it lets patients sleep by stimulating dopamine receptors. That also decreases pain -- pain patients like Fuller gladly live without.

Side effects from MIRAPEX are mild and include nausea and weight loss. It was designed to stimulate dopamine receptor production in Parkinson's patients. Researchers discovered it could help fibromyalgia patients by accident.

This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week. To subscribe, go to: http://www.ivanhoe.com/newsalert/.

If you would like more information, please contact:

Lori Lewis
Pacific Rheumatology Associates, Inc. PS
4300 Talbot Rd. South, Suite 101
Renton, WA 98055
(425) 235-9500
http://www.pacificrheumatology.com

Mameblanche
Member

04-13-2005

Monday, December 12, 2005 - 12:11 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Wow, thanks for the research Herkie! :-) Something to explore...

Pamy
Member

01-02-2002

Monday, December 12, 2005 - 7:31 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
whooo I love the weight loss side effect

Pamy
Member

01-02-2002

Monday, December 12, 2005 - 7:32 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
I just started the 200 provigil...helps some...anyone else try it?

Mameblanche
Member

04-13-2005

Monday, December 12, 2005 - 7:48 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
I'm leery of meds for this. I use tylenol 3's when the pain is awful or muscle relaxants when needed. I'm even hesitant to take ginko biloba for improved memory and I need it! But do keep us posted on how you're doing. Leery today, doesn't mean I might not be willing tomorrow. :-)

Pamy
Member

01-02-2002

Monday, December 12, 2005 - 8:10 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
oh I am all about taking a pill to help me! LOL

I forgot about ginko..I need to get some cuz I never had the fibro fog but have noticed it lately.....I think......LOL

Sunrvrose
Member

08-13-2001

Friday, December 16, 2005 - 10:48 pm   Edit Post Move Post Delete Post View Post Send Sunrvrose a private message Print Post    
I'd like to offer a bit of hope for chronic pain sufferers. I had FM for years, following a serious traffic accident. And as you all know, first comes a trigger event, like an accident, then comes the stress associated with being ill. Trying to live on disability, bills piling up, and just the torture of never feeling good.

Doctors and physical therapists trying to force you to do exercises...that is soooo stupid. Exercise exacerbates FM, plain and simple.

I did total rest along with a ton of mind over matter, and it worked. I became, I'd say, 75% pain free after about 10 years. And I worked every day of those 10 years, in pain and miserable.

Then I started working at an amazingly high stress, physically demanding job. I did fine for about 4 years. Then I woke up one morning and was devastatingly ill. I drove myself about 6 blocks to the nearest medical clinic (thank goodness it was so close) and I walked right past the receptionist and marched into a group of docs and nurses that I could see in the hallway. I marched up to them and said, "There is something very wrong with me." They took one look at me and rushed into action. They called an ambulance, supporting me while we waited. Everyone was certain that I had had a stroke.

At the hospital, the MRI's and CT's didn't show a stroke. My EKG's were very abnormal, so they decided that it was probably a heart attack. Turned out that wasn't it either. From that day on, June 20, 2001, I was in unyielding pain, dizzy, and utterly disabled for months. I saw cardiac docs, neuro docs, and general docs. Nothing worked.

Oddly, in June of 2002, I saw a new doc, she had come in from Los Angeles, to cover for a doc who had suddenly had to leave.
(Trust me, I'm finally getting to the point.)
Oh, Yes, the diagnosis they had finally come up with was that I had Relapsing/Remitting MS.

This new doc prescribed Neurontin, Tranzadone, and Lorazapam. Within about 6 weeks, I felt better. By the time I had finished relocating to Northern Cal, Sept 1, I felt remarkably better, and by December, I was employed again, feeling perfect. I never took the dosage reccommended, I took about 1/3. I was supposed to take Neurontin 3X daily, I only took one. I never took Lorazapam 3x daily, I only took one. I did take the Tranzadone as prescribed, which was one at bedtime.

There is no doubt, whatsoever, that this combination of very safe medications made a huge difference. When I had to go to a new doc in this area, he reviewed my meds and was very happy to continue the Rx's. I stayed on the meds till about June of 2003. Then I stopped all meds.

I thought I was home free. Accepting that we would never know what had happened to me. Obviously the MS diagnosis was wrong, I had gotten better, not worse.

Then about 4 months ago, the pain returned, the slurred speech came and went, the dizziness came and went, and the movement disorders came and went. It wasn't nearly as bad as before, but it's back, and I'm pissed. I don't have insurance or money to start the meds again. The Neurontin was about $147.00. Yikes!

I'm able to function through the problems, and for that I'm grateful. I'd much rather have the meds, but that's not an option for now.

But I have no doubt at all that if I go back on that combination of meds, I'll be fine again.

I just really want to suggest that narcotic drugs don't help chronic pain at all. They just make extra layers of pain. I hate drugs. My philosophy is...you got pain and you take narcotic drugs, now you got 2 problems, you still have pain, and now you really feel like s*it from the drugs. I'll take pain any day, any time, over the feeling of being drugged.

Anyway, wow, have I gone on and on and on.

Chronic pain sufferers, ask your doc about Neurontin. Somehow, though it is a seizure medication, they discovered that it is effective for MS pain. Since they thought I had MS, and was in a lot of pain, they tried it on me. It works and it is very benign. (meaning it's very safe) I've seen some stupid things on the web saying that Neurontin causes depression...Hello, prescribe it with an anti-depressant like Tranzadone, and no problem.

Xxwriterxx
Member

11-28-2005

Saturday, December 17, 2005 - 12:47 pm   Edit Post Move Post Delete Post View Post Send Xxwriterxx a private message Print Post    
Sunrvrose, thank you for sharing your story and the confidence you have in the medications you used. This could be the answer for me, if I can find a doctor who won't demand all the expensive testing.

Herckleperckle
Member

11-20-2003

Wednesday, January 25, 2006 - 10:56 pm   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported May 11, 2005



Alternative Advances: Fixing Fibromyalgia


WATERBURY, Conn. (Ivanhoe Broadcast News) -- There's often a battle among doctors about the value of alternative medicine. But one physician has a foot in both worlds and is hoping that can save some of his patients from a lifetime of pain.

1

Three years ago, Jeanne Langlais couldn't pick up a brush to fulfill her favorite pastime. "Couldn't paint anymore," she says. "I couldn't lift my arms up. Your thighs ached when you stood up, my arms ached, my neck ached. I couldn't understand why."

Langlais also could not exercise. The chronic muscle pain forced her into early retirement. After two years of tests, she finally got the diagnosis: fibromyalgia. But finding a treatment was another story. "Anti-inflammatories, pain killers, anti-depressants, and none of them worked for me."

She sought an alternative treatment called intravenous micronutrient therapy. IVMT is a cocktail of highly concentrated vitamins injected into the vein. Langlais says: "About the 5th treatment I started to feel better, and by the 6th treatment I had no pain. I was clicking my heels."

2

David Katz, M.D., a Yale-trained physician, is one of a few doctors using IVMT. He's treated more than 60 patients so far. About 80 percent of them have had good results.

"If I'm able to help patients who for years have suffered and couldn't find help -- it doesn't get any better than that," says Dr. Katz, who is now a preventive medicine specialist at Yale-Griffin Prevention Research Center in Derby, Conn.

He is conducting a clinical trial on IVMT sponsored by the National Institutes of Health. He says the treatment has few side effects, but a major drawback is cost. It's not covered by insurance ... not yet, at least.

"If we prove that this is a cost-effective therapy for fibromyalgia, it then becomes a reimbursable commodity," Dr. Katz tells Ivanhoe.

3

For Langlais, the $55-weekly injections are a hardship. But she'll continue them, she says, because of the promising picture they paint for a future without pain.

(You can join Ivanhoe's online discussion on this treatment and other alternative treatments for patients with fibromyalgia by subscribing to Ivanhoe.com)

If you would like more information about this approach, please contact:

Lauren Liberti
Integrative Medicine Center
252 Seymour Ave.
Derby, CT 06418
lauren.liberti@yalegriffinprc.org

Mameblanche
Member

04-13-2005

Wednesday, January 25, 2006 - 11:16 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Herkie, thanks so much, this is fascinating stuff. And excellent food for thought. I'll pass it along to my physio-therapist who is an expert on Fibro (she lectures about it all across North America), to get her opinion.

Herckleperckle
Member

11-20-2003

Thursday, January 26, 2006 - 7:33 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
wink

Herckleperckle
Member

11-20-2003

Friday, January 27, 2006 - 5:54 am   Edit Post Move Post Delete Post View Post Send Herckleperckle a private message Print Post    
Source: Ivanhoe.com
Reported May 11, 2005

Alternative Advances:
Fixing Fibromyalgia --
In-Depth Doctor's Interview


David Katz, M.D., a specialist in internal medicine and director of the Yale Griffin Prevention and Research Center at the Integrative Medicine Center Griffin Hospital in Derby, Conn., discusses the alternative advances to fixing fibromyalgia.

Ivanhoe Broadcast News Transcript




What is fibromyalgia and how does it impact a patient's life?

Dr. Katz: Fibromyalgia is a condition of unknown cause seen most commonly in middle-aged women. This is because the condition is associated with severe and, at times, debilitating muscle pain throughout much of the body. Often very severe fatigue is a major problem with women suffering from fibromyalgia; in fact fibromyalgia syndrome (FMS) overlaps with chronic fatigue syndrome (CFS). There can also be brain fog and difficulty with concentration. The condition may wax and wane by itself but can also be quite progressive. At times it can be so bad that it requires people to stop working and seek disability. The biggest problem with fibromyalgia is that the cause is unknown. There is no definitive test for it so it lacks the credibility and respect diseases that are better understood typically get in the medical system.



If there are no tests, are you just seeing if the patient fits certain criteria?

Dr. Katz: Yes. There are two key elements in diagnosing fibromyalgia. One is meeting the criteria for the condition, or giving a story that sounds like fibromyalgia. There are characteristic tender points in the muscles, especially of the shoulders, the back and the upper arms. We test those tender points and control points. Then if many of the standard tender points are sore and the control points are not, we consider fibromyalgia as the cause. The other key element in diagnosing any condition we don't understand and for which there is no definitive test is to rule out everything else. So like many syndromes, which are diagnosis of exclusion, fibromyalgia is established by ruling everything else out.



What are the current treatments in traditional medicine for fibromyalgia?

Dr. Katz: Because fibromyalgia is associated with pain, one thing that has routinely been done is to treat the pain. Of course we have a wide array of conventional drugs for treating pain, such as anti-inflammatories, which are commonly used in severe cases. Some antidepressants show some efficacy in treating the pain of fibromyalgia. Interestingly, it's not the antidepressants that tend to be most commonly used these days for the treatment of depression. Drugs like Prozac, or SSRIs, don't tend to be highly effective in the treatment of fibromyalgia. An older class of antidepressants called tricyclic antidepressants tends to work somewhat better. One of the more effective treatments is gradually progressive physical activity. The problem, of course, is when you're exhausted and your muscles are sore, it's very hard to get started. The condition almost prevents you from doing something that will treat the condition. If you can get patients over the hump and have them gradually increase walking or some low impact physical activity it tends to be very helpful. It would be quite characteristic of most treatments to combine several of these things. In many instances, however, all of these together -- the antidepressants, pain medication and some kind of exercise program -- fail to be enough and symptoms persist and sometimes worsen.



Why did you decide to start using IVMT to treat fibromyalgia?

Dr. Katz: All too often when therapies that have been considered alternative for decades suddenly get put to the test, we find they should no longer be considered alternative because in fact they work. This is why I began examining IVMT [intravenous micronutrient therapy] or, as we like to call it, the Meyers Cocktail, as a possible treatment for fibromyalgia. Actually a resident I was training brought IVMT to my attention when he pointed out that many of our patients suffering from fibromyalgia didn't do so well with traditional treatment and suggested using IVMT instead. I, of course, told him to prove it to me, which lead to extensive research on clinical trials for the therapy. When nothing turned up, we knew we had to do something ourselves. So working together, we constructed an online survey that circulated to all of the clinics in the country using IVMT. We received nearly 12,000 responses about patient treatment with an 80-percent success rate to the therapy with almost no toxicity. We then took two actions. We decided to offer this to our patients asking them to sign a form of consent because we have to tell them we have no real scientific evidence to back this up, but we'd like to give it a try anyway if you're game. The other thing we did was pursue funding from the NIH to do a placebo-controlled trial, which was sorely lacking in the literature.



What is in the cocktail?

Dr. Katz: The cocktail is a combination of a high concentration of vitamins.



What does the cocktail do to the body that other medications don't and, consequently, are there any side effects to the cocktail?

Dr. Katz: The Meyers Cocktail is a combination of vitamins and minerals. We tend to think that it's the calcium and in particular the magnesium that made exert the strongest effect. We worry about infusing high doses of nutrients because the kidney has to clear them and it could lead to kidney toxicity. We tend not to give this therapy to any one whose kidney function is not normal to begin with. You're putting this treatment into the vein. If someone has congestive heart failure or another condition where they don't respond well to the increase in blood volume, you'd have to be very cautious there. In healthy people, this appears to be a remarkably safe treatment because there is a vasodilating effect, causing the blood vessels to open up more and a flushing feeling to occur. I've had it administered to me several times so I'd know what my patients are experiencing --you feel kind of flushed in the face, maybe even a little bit light headed. Some patients also feel slightly nauseated. That is the extent of toxicity we've seen.



Do the patients taking the cocktail feel it is helping them?

Dr. Katz: The patients are responding much the same way the surveys indicated they would. Namely that this is not a miracle cure but it often works. That's important because people have the notion that conventional medicine sometimes works and sometimes doesn't where as in alternative you could find miracles. When things work there's a reason they work and there is nothing in medicine conventional or alternative that works for all the people all the time. About 80 percent of our patients get better and very often from this treatment when nothing else has worked.



As a conventional doctor, is it controversial for you to be using an alternative method like this?

Dr. Katz: It's interesting to be not only a conventionally trained physician but also a conventionally trained physician at a premier and fairly conservative medical institution. I'm very cautious about using alternative medicine in a responsible way. In fact, I would characterize the challenge here is being responsive to patient need while remaining responsible about the use of evidence. The needs of patients simply stated go on well past the edge of medical evidence. What we know from randomized clinical trials runs out long before we have fixed all the things that compromise the quality of our patient's lives.



Is this something the insurance companies will cover?

Dr. Katz: Generally our patients have to pay for the intravenous micronutrient treatments. Regrettably at times that's the difference between access to them or not. Some patients who would likely benefit from this or at least should be given the chance can't afford it. We do all we can to make this affordable to all, even to the point of making it difficult to balance our books. If we go any further than our current efforts we'll put ourselves out of business and nobody will be getting the treatment here. The reason for doing the clinical trial other than answering scientific questions is if we find scientific evidence that this works well one trial will lead to another, will lead to another. Ultimately you do trials not only of the therapeutic effect but also of the cost effectiveness. If we prove this is a cost-effective therapy for fibromyalgia it then becomes a reimbursable commodity. It may very well be that IVMT is beneficial to all, making patients currently suffering feel better. Consequently, because they feel better they're more functional and productive, need less drugs, are less costly to their insurer, and everybody wins. To get to that point, we need to do the science first and answer the fundamental question of whether this is a cost effective therapy.

END OF INTERVIEW

This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc., or any medical professional interviewed. Ivanhoe Broadcast News, Inc., assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors in different ways; always consult your physician on medical matters.

If you would like more information, please contact:

Lauren Liberti
Integrative Medicine Center
252 Seymour Ave.
Derby, CT 06418
lauren.liberti@yalegriffinprc.org

Mameblanche
Member

04-13-2005

Friday, January 27, 2006 - 1:26 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
Thanks Herkie! Fascinating stuff. I totally related to the diagnosis of Fibro at the top of the article!

Pamy
Member

01-02-2002

Friday, January 27, 2006 - 6:46 pm   Edit Post Move Post Delete Post View Post Send Pamy a private message Print Post    
HP, I really appreciate you posting these finds!!!! Thx so much!

Sunshyne4u
Member

06-17-2003

Monday, March 20, 2006 - 3:11 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
My specialist is known worldwide.

From what I recall, fibromyalgia and CFS both are most likely caused by repeated viral infections. Since this condition is prevalent in Healthcare workers and TEachers it seems to be triggered by working in an environment in which you come into contact with many different germs/viruses.

Vitamin therapy and B12 shots are not that uncommon as anyone with this immune disorder also has problems assimilating foods...food sensitivies, allergies, irritable bowel syndrome. Just taking vitamin pills doesnt do any good if they arent absorbed in the gut.

Neurontin is a med that works for most pain people. However, the generic Pzifer brand Gabapentin works way better.

Trouble with Gabapentin is that it is like being half wacked on pot or a couple of drinks ALL THE TIME!! It works by effecting the surface nerves of the body...ie/ you dont feel pain from something hot without a delay. Or you hurt yourself and dont notice as you are numb.

I cut myself pretty bad once and had NO ReCALL of when I happened as I didnt feel it.

Within an hour of taking the pill I feel like my face (and neck) is partially frozen with dental anesthetic...this is a HUGE relief as the pain usually is horrendous used to lead into a migraine by the end of day.


I am considering quitting the Gabapentin as I dont like to be impaired WORSE than I am already from the Cognitive disorder.

***********

The specialists at the Pain Clinic wanted me to take a NEW med which is called LYRICA. It is a Pregablin med. Supposedly it is a more specific form of Gabapentin...but the CPS guide has it as Completely unknown sideeffects etc.

I dislike the concept of taking a med which they dont know what longterm use MAY cause.

Sunshyne4u
Member

06-17-2003

Monday, March 20, 2006 - 3:11 am   Edit Post Move Post Delete Post View Post Send Sunshyne4u a private message Print Post    
My specialist is known worldwide.

From what I recall, fibromyalgia and CFS both are most likely caused by repeated viral infections. Since this condition is prevalent in Healthcare workers and TEachers it seems to be triggered by working in an environment in which you come into contact with many different germs/viruses.

Vitamin therapy and B12 shots are not that uncommon as anyone with this immune disorder also has problems assimilating foods...food sensitivies, allergies, irritable bowel syndrome. Just taking vitamin pills doesnt do any good if they arent absorbed in the gut.

Neurontin is a med that works for most pain people. However, the generic Pzifer brand Gabapentin works way better.

Trouble with Gabapentin is that it is like being half wacked on pot or a couple of drinks ALL THE TIME!! It works by effecting the surface nerves of the body...ie/ you dont feel pain from something hot without a delay. Or you hurt yourself and dont notice as you are numb.

I cut myself pretty bad once and had NO ReCALL of when I happened as I didnt feel it.

Within an hour of taking the pill I feel like my face (and neck) is partially frozen with dental anesthetic...this is a HUGE relief as the pain usually is horrendous used to lead into a migraine by the end of day.


I am considering quitting the Gabapentin as I dont like to be impaired WORSE than I am already from the Cognitive disorder.

***********

The specialists at the Pain Clinic wanted me to take a NEW med which is called LYRICA. It is a Pregablin med. Supposedly it is a more specific form of Gabapentin...but the CPS guide has it as Completely unknown sideeffects etc.

I dislike the concept of taking a med which they dont know what longterm use MAY cause.

Kstme
Member

08-14-2000

Tuesday, March 21, 2006 - 3:26 pm   Edit Post Move Post Delete Post View Post Send Kstme a private message Print Post    
Sunshyne, it is, also, believed these diseases may be caused from extensive injuries and/or many surgeries.

Mameblanche
Member

08-24-2002

Tuesday, March 21, 2006 - 3:48 pm   Edit Post Move Post Delete Post View Post Send Mameblanche a private message Print Post    
I am going for a massage tomorrow and boy do I need it. I am one giant booboo today. Especially my neck but I am so achy and stiff as a board all over. And some of my muscles are even fibrillating which is kinda scary actually. Luckily a spa sent me an email today with a discount pass for this week. Hurray! (I am even getting a facial cuz its also being discounted.) Anyhow, my point is that massage is the best medicine for me. Mind, body, and spirit. I just wish I won the lottery so I could get them on a regular basis.

Pamznic
Member

03-01-2006

Thursday, March 23, 2006 - 5:52 am   Edit Post Move Post Delete Post View Post Send Pamznic a private message Print Post    
I shall not go on and on about having fibromyalgia but suffice it to say I have been deemed disable since 1998. I was diagnosed in 1989. The cautionary tale I have is that (as I sit here writing at 4:10 in the morning) sleep is one of the worse things I deal with in addition to feeling like I have the flu each and everyday. Even after so many years I forget when new things pop up that they may not be fibro. I've been having trouble with my bladder for about two weeks. The urine tested clear so monday I had an ultra sound. Yesterday my Dr. Informs me I need to see a urologist. (I Am so dense that I thought those were for men only)LOL!
I have literally tried every form of relief known to man over the years and the two that work (for my fibro) is 1. Keep a good attitude and laugh as much as possible 2.
I don't have any hang up about taking meds.
Most Doctors that I've seen say we suffer to much and are under medicated. Those are my pearls for this early AM.