New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
Summary of Experimental Treatments
26 Replies
JJ1 - May 14

I stumbled across a webite that summarizes some of the "experimental" treatments for fibromyalgia and thought others may find it interesting. Here is the web site:
http://www.immunesupport.com/L
ibrary/showarticle.cfm/ID/4911/Health
Watch/HealthWatch-Treatment-Guide-200
3
(the dashes in "HeathWatch-Treatment-Guide-2003" are all supposed to be there. Delete any other extraneous dashes)

 

larry - May 14

I am very glad that you found this site, you are getting closer to finding the medical community that understands fibro. Unfortunately some of those newsletters are already outdated (2004) as they has made significant improvements on these modalities since 2004. Dr. Jacob Teitelbaum, M.D., is on their scientific advisory board here as well. The common theme among the doctors at this site is, toxin overload, yeast infections (Sinus, urinary, ear, infections) , sluggish lymph systems (thick blood, coagulation problems), nutritional deficinces, hormonal deficiences such as dopamine, seratonin, cortisol, thyroid, etc,, an overstressed central nervous system (our bodies circuity can get blown) , detox by suanas and oxygen deprivation that can be addressed by oxygenating your water and ozone and hyperbaric chambers. These are all very good examples why I say "you can't teach an old doc new tricks".

 

lbrandel - May 14

Larry;

You are a wealth of information, thank you! I am currently looking for a doctor whom specializes in Fibromylagia in the Twin Cities area. I currently am being treated by a neurologist.

Laura

 

larry - May 14

Thank you. I have been treated holistically for many years and found that they are right on with their diagnosis. I also found that tradional MD's were clueless on the holistic approach and therefore were stuck on just the symptoms and just the part of the body that they specialized in and were completely ignorant of the connection between the specific parts of the body. However, it is very unfortunate that in order to get help with holistic care you have to go outside of the current traditonal MD's as they have not been trainned to look at a body as a whole. The US is still light years behind other countries in the world. When you hear the expression that we take better care of our cars, it is true. Imagine going to car repair shop and being told that you have to go to a carburator specialist, a muffler specialist, a pistin specialist, an oil filter specialist, a transmission specialist, etc. Taking care of our cars is healthier since auto shops always take alook at your car on a holistic basis. If you put sugar in your gas tank it will create many imbalances in many subsystems. Having fibro is like a car with any subsytems that re sick. You can change the flat tires and fix the transmission but if you don't fix the main engine block you still have a sick car that doesn't run. Our approach in the US is that if you are fat, you are pig so we will remove part of your stomach, instead of the looking at imbalances in your system that created the weight problem. If you have cancer of the leg, we amputate legs, instead of correcting the imbalances that caused this. When I discovered the Fibroand Fatigue Centers I knew they were right on as they have successfu intergrated the holistic approach with conventional medicine. Here are two cities where Dr. Jacob Teitlebaum will be lecturing, I hope they are somewhat close to you....................................
.................................Public
-
5/19/07 Matteson, IL FACES 2007 10:30AM-2:40PM Midwestern Fibromyalgia/Chronic Fatigue Syndrome Conference. www.fibrocop.org ----------------------------------
----------------------------------
-
5/16/07 --Lansing, MI--- 11:30AM Informational seminar "Are you Tired of Being Tired?" by Jacob Teitelbaum, MD. Better Health Market. Lansing/Frandor Mall, 305 N. Clipper St.. To reserve a seat call 517-332-6892 by May 14th. --------------------------
--------------------------
-
5/15/07 --Detroit, MI--- 7:00-9:00PM Informational seminar of Fibromyalgia & Chronic Fatigue by Jacob Teitelbaum, MD. Troy Marriott Hotel, 200 West Big Beaver Road . Good Luck!!



s for many years

 

skidoo - May 14

The term "experimental" is a warning flag. If you are at the point where you have exhausted the clinically tested and medically accepted options and want to be a guinea pig, by all means go to a center and check them out! It would be very frustrating to be at the point of trying everything and having nothing work. As another word of caution, if you have an estrogen-related breast cancer in your personal or family history, you should not take DHEA which is part of the F&F centers magical mystery potion.

 

JJ1 - May 15

The DHEA does sound a little scary to me (family history of breast cancer). Found this article that states that it was found not to be very helpful for fibromyalgia anyway................"DHEA no help for fibromyalgia" -- http://www.nutraingredients-usa.com/new
s/ng.asp?id=61782-dhea-fibromyalgia-nnf
a
(Ok, here are the dashes that are supposed to be in the weblink above: the one between "nutraingredients-usa", the ones between : "61782-dhea-fibromyalgia-nnfa" -- any others you will need to delete to make the website link work)

Here is warning about breast cancer and DHEA from the article. “Finckh also expressed concern over the long-term use of DHEA, since it can covert to estrogen and may, therefore, be linked to an increased risk of breast cancer. “

 

JJ1 - May 15

fyi, another site that states that DHEA does not help with fibromyalgia and mentions links to breast and other kinds of cancers. It also lists other things DHEA does and does't help ... (i am putting a space between www. and the rest of the web address to see if that elimates the problems with this site adding extra dashes)
http://www. mayoclinic.com/health/dhea/NS_patient-dhea ............ Enough for me on the DHEA research. I am going to stay away from it, personally, due to my family history.

 

larry - May 15

JJ1, I am not aware of DHEA beng recommended at the F&F center. I have been going since October and have never even heard it being discussed there. I would be very ,very cautious on taking any hormone by any doctor unless they have done a very, very comphrensive series of blood testing which most doctors do not know what to order. Then the next obstacle is that most doctors don't understand the connection between the glands and therefore only rely on the results that are on paper. Unfortunately your symptoms will get dismissed while the results on the paper take priority. The good news is that not all doctors are like that. Try to stay away from doctors that pass out pills in hopes that "one size fits all". i am sure that DHEA plays a role in helping people that might have a deficiency in one of their glands and the doctor understands how the glands communicate. Unfortunately most doctors don't understand this communcation ad pass out pills hoping to hit the jackpot. The "one size fits all" or "allopathic" prescribing is what creates the most problems and is considered obsolete among the progressive medical circles.

 

JJ1 - May 15

It is mentioned on the web site I copied at the beginning of this post. I really didn't catch it at first except skidoo brought it up so I was wondering about it.

 

JJ1 - May 15

Not sure about the Fibro and Fatigue Centers, but Dr. Teitelbaum is listed as a doctor treating with DHEA….(quotes from the above website)…

“Dr. Teitelbaum uses various laboratory diagnostic tests to assess a number of problems he feels contribute to FMS and CFIDS. After he takes a complete history, he may treat you with some or all of the following: synthroid or armour thyroid to boost a low thyroid level, cortef for adrenal insufficiency, DHEA to boost DHEA levels, medications to treat neurally mediated hypotension which causes dizziness, oxytocin (a female hormone), estrogen and progesterone, various vitamins, antidepressants, herbals for sleep aids, anti-yeast treatments, stool parasite therapies, homeopathics and various other medications such as nitroglycerin, naphazoline hydrochloride (eye drops), calcium channel blockers, and others.”

“Another therapy that has proven beneficial to some patients in conjunction with other treatments described is that used by Jorge Flechas, M.D., Jay Goldstein, M.D., and Jacob Teitelbaum, M.D. DHEA levels are found to be low in FMS patients. By carefully listening to his patients’ complaints, Dr. Flechas decided that the hormone oxytocin, along with DHEA supplementation, might help alleviate some of his patients’ symptoms. He first runs a blood test to determine baseline DHEA levels, then adds supplements to bring levels up to what they should be naturally around age 30 (150-200 mcg/dl); 25-30 mg of DHEA is recommended, either in capsule form or cream. Dosages and duration of usage should be determined by a physician. Checking estrogen and testosterone levels is also recommended.”

 

JJ1 - May 15

Also, here is something you posted earlier about the steps taken at the Fibro and Fatigue centers that mentions DHEA ..............Name: larry | Date: January 29, 2007, 14:16 Answer: Component Three: Balance the hormones There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunction with these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When they are properly treated and balanced, tremendous results can be achieved.

 

JJ1 - May 15

larry, OK, promise, my last post on this subject, but the Fibro and Fatigue centers definitely do use DHEA. Do a google of "fibromyalgia and fatigue centers DHEA". You can even buy tablets from their site. Maybe your DHEA was fine, larry, so it is not included in your treatment regime. I don't know what the heck skidoo is talking about magic potions because it looks like they just give you straight DHEA tablets.

 

larry - May 15

Hi JJ1, don't worry about posting too much, it is ok with me. My point is that you should never even consider taking any hormones w/o EXTENSIVE blood testing by a doctor that has EXTENSIVE knowledge of how to balance ALL of the hormones of the glandular system together. There is NEVER just one hormone that will be the answer because if one gland is "off" then the other glands will be "off" as they are trying to compensate for the weaker glands. The articles that you posted from Dr. Teitlebaum are 4 years old and there has been tremendous advancements since then. The doctors in the more progressive medical community are always researching, learning and adapting to the newer syndromes and diseases as opposed to most doctors that choose to stay traditional and practice only on what they learned in medical school and dismiss people's symptoms if they were not taught it in medical school- regardless of how long along they finished medical school. It is very important to research and learn about the hormonal imbalances but trying to pick just one hormone and determine if it is good or bad for you w/o the extensive blood testing to determine what your complete profile looks like will get you no-where. I would also caution on taking advice from someone that appears to be very stuck and angry and constantly posting only very negative and destructive comments that can’t possibly do anyone any good. And to top it all off, has no grounds for the incorrect info that she posts as she is not a patient of the F&F centers. I am also not aware of any mystery, magical potions as I know exactly every ingredient that I receive there. There is no pushing of pills, you go at your own pace and you truly develop a partnership with your doctor in your recovery process. Anything else that you hear or read, especially by people that have not been treated there is just false and irresponsible. Some of those mind-body books help explain the fibro personalities. The legalist and the right-fighter (needing to be right) come to mind here. In this case where that person always attacks the F&F centers w/o even having first hand experience is just fighting to be right. That is ok, if it works for her. However, what this really gets down to is this -would you rather be right or be well? The choices are - to be “right” and choose to continue on the track of owning the negative and incorrect judgements that everything is bullcrap or choose to be “well”. I chose to be well. The law of attraction, what you give out comes back to you. The F&F center may not be the right choice for many and that is ok but please don’t get sucked into the negativity or you will never get well.

 

skidoo - May 15

Talk about negativity. It's ""negativity"" to shoot down the whole medical community because they don't agree with the practices of your group of doctors, a group that is prescribing treatments that have not undergone clinicial trials and testing and recommends treatments that are considered risky by most other doctors. All I am saying is to use caution when going the unconvential route. Make sure you have exhausted your other resources. If you can believe that 90% of doctors are wrong, how come you can't accept that your doctors may be the ones who are wrong? It is negativity to believe that your way is the only way and anyone ignoring you is being ignorant. Are patients of your facility being warned of the risk when ""prescribed"" DHEA? I just visited the ""store"" of the F&F center internet site and I could go there and buy a big bottle of DHEA tablets from them right now with no blood tests or warnings or words of caution. Pretty irresponsible of a group of doctors in my humble opinion, but like you said, they are ""unconventional"".

 

larry - May 16

Skidoo- my wish and prayers are for you to gain wisdom and gain patience so that you can have time to get educated on the facts before you send out such destructive posts. Pls take some time to read the books that I have posted, read the clinical studies that I have posted, go to a F&F center or do whatever it takes for you to develop some knowledge in this area. It appears that you are in a constant state of anger and sound somewhat confused as you seem to be defending the medical system that has failed you. The medical system that usually takes 7 years to finally diagnose you and then this medical system just treats your symptoms. I am not aware of any research that shows that anyone, even just one person, that has been cured by taking pharmaceuticals that just address the symptoms. However, there is plenty of research that shows that doctors like Dr. Teitlebaum and those that follow a similar approach have been very success in reversing fibro in thousands of patients. I also posted this data as well as data from the American Journal and Association of Pain Management. If you read the data that has been posted you will understand our medical system is baffled by this syndrome-and there is no need to be. Not because they are horrible people but because they have not been taught the holistic approach in medical school, they are just behind the learning curve, unaware and blinded. Unfortunately they have done a lot of damage to their patients because of their ignorance. If you read the posts here going back one year you will see how many people have posted about being mislead and/or insulted by their doctors, because the doctor was ignorant. The last time I checked the dictionary on ignorant it stated---------- - –adjective
1. lacking in knowledge or training; unlearned: an ignorant man.
2. lacking knowledge or information as to a particular subject or fact: ignorant of quantum physics.
3. uninformed; unaware.
4. due to or showing lack of knowledge or training: an ignorant statement. -------------------------------------------
-------------------------------Unfortunatel
y
the word ignorant is appropriate in this case. By the Way, I have no investment in the Fibro and Fatigue Centers and as I have mentioned it doesn’t matter to me whether you go there or not. However I do take offense when I see such negative comments that get posted w/o the proper data to back it up, that get in the way of people getting well. I have posted my positive results for many months here and it is fascinating to me to see such horrible, negative comments to someone’s good results and the sharing of the data that has positively affected thousand of fibro patients.
Either you are just a very, very negative and skeptical person by nature or you are scourned because you have fibro and you have negative experiences in getting results for your fibro, Maybe you are just very, very scared or just plain closed out or shut down from some negative experience in your life as all of your posts always seem to be oppositional as opposed to helping people. I wish that I could help you however until you read the books that have been posted here, read about the clinical studies that have posted, visit the websites that have posted and get educated on the topics, I just can not envision that any conversation with you could result in a positive outcome. I wish you well in your journey for better health.

 

skidoo - May 17

Hmmmm. Let me think. Cancer or fibromyalgia, cancer or fibromyalgia, cancer or fibromyalgia, cancer or fibromyalgia??? Ok. Thought about it. I choose fibromyalgia.

 

JJ1 - May 17

Skidoo, I think your message would come across better if you change your tone. I agree that everyone has to weigh the risks of everything they do. But, that said, someone who is in complete debilitating pain with no quality of life may actually CHOOSE to have an increased risk of developing cancer over not being able to get out of bed or do anything for the rest of their life due to fibromyalgia pain……………………………. And Larry, someone like me who just has a few achy places, occasional short-lived flare-ups, and fibrofog but is otherwise leading a happy and productive life may not be willing to take the risk of experimental treatments. Everyone’s path to success with this illness is going to be different. You are lucky you found your path Larry, but it may not be the path for everyone. I am glad for you and glad you are able to post your positive results but there is nothing wrong for someone else to be more cautious in their approach. Sometimes you say or imply that someone taking an approach different than yours (aka going to the nearest Fibro and Fatigue center) does not want to get well and that is not the case at all.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question