I intended to write this follow-up post on my experience with Dr. Whitcomb and his Neurologic Relief Centers Technique last Monday, but have been sidelined by a bad flare-up. Yes, I do attribute my flare to the workshop and testing technique, but even so, I intend to give you a fair account of the workshop, although as with everything on my blog, it will be full of my opinions. It may be a lot to follow, so I hope I have managed to present a readable review.

The logistics of the day went like this:

I was initially invited to the workshop by a local acupuncturist who I will call “Dr. J.” The workshop began at 1PM on Friday, July 24. The local acupuncturist as well as several other local chiropractors actually paid for a training session with Whitcomb. They spent all of Thursday and Friday morning training to learn his technique. Then at 1PM on Friday, myself and the other patients whom each practitioner invited arrived for a lecture by Whitcomb. After the hour long presentation, we broke off with the practitioner who invited us to be tested to see if the technique would benefit us.

So What is This Technique?

The technique involves several minutes of firm pressure to either the anterior or posterior neck trigger points. The pressure is intended to release the tension on the nerves that travel through the meninges, and relive the pain and symptoms this tension causes. Whitcomb attributes most symptoms of FM to this compression. His name for this is meningeal compression, which he uses interchangeably with Fibromyalgia.

I brought three of my support group members with me. As you can imagine, given my impression of Paul Whitcomb and his clinic, I approached this event with a healthy amount of skepticism. Adding to my skepticism was the information one of my resourceful members shared with me about Whitcomb. He is still under investigation by the California Board of Chiropractic Examiners. There is still a possibility that he may lose his license for charges of administering “excessive treatment” and making “sensational statements which are intended to deceive the public.” He has recently closed his practice in South Lake Tahoe and is traveling nationwide to teach his technique. The reason he gave during the presentation for this move is to eliminate the need for patients to travel to him.

Whitcomb’s Presentation

The presentation Whitcomb gave was full of dramatizations: “Fibromyalgia patients are closest to prisoners of war.” “The Fibromyalgia patients who came to my clinic did not want to continue living.” “Eighteen percent of Fibromyalgia patients commit suicide.” I am really curious to know where he got that number, but unfortunately he did not allow for Q & A. He never once described Fibromyalgia patients as type A, as givers, or as overachievers, which in my experience is closer to the truth. Instead he painted a very bleak and desperate picture of us. Most of his claims were dramatic and over-the-top. He did not share anything about FM that I did not already know, but he did supply us with many statistics about his practice and the tremendous results he gets; such as 85% of his patients remain symptom free, only 6% lost the benefit of his correction and treatment after leaving his clinic. It makes me wonder why he would choose to close up shop.

As we moved on to the testing part of the workshop, we were all required to sign a waiver agreeing to let our test be recorded on video and used at their discretion. I refused, as did the other members of my group. I attended this workshop to research and share as much information as I could about Whitcomb’s technique. I would not agree to have my image shown in support of it and without my knowledge. Dr. J expressed our concern and they agreed to let him test us without being filmed.

I think because we were not being filmed, Whitcomb basically left Dr. J on his own, while paying closer attention to the chiropractors he trained and their patients who were being filmed. Also, Whitcomb unfairly sold Dr. J on training with him. He told Dr. J that “the test is the technique,” but then during the presentation he said just the opposite, because the chiros learning the technique also learned a particular adjustment that an acupuncturist like Dr. J is not legally qualified to perform. When I questioned Dr. J about this he said, “Yeah, I guess he kind of fooled me there.” So the “technique” that Dr. J paid to learn and implement into his practice is not complete. I really feel like Whitcomb snowballed Dr. J and any other non-chiro who paid to learn his technique.

And Now I Share Why I Have Been in a Flare

My first instinct was to not be tested, and I wish I had followed it. Instead I sat and watched many patients receive the technique and seemingly have instant improvements. One older gentleman with Parkinson’s had a noticeable reduction in his tremors. Another man was able to lift his arm above his head for the first time in months. I should note that we were not all fibromyalgia patients in the room, although the presentation was geared specifically to FM. After observing for some time, I was just too curious to opt out, so I hopped up on the table and let Dr. J proceed. After a short palpation he concluded I was sorest and tightest at the trigger points on the side of my neck below my ears. I concurred with this assessment.

He used metal rods with soft ends to place steady, firm pressure on my neck for five minutes. It did not take long for me to begin to feel nauseous. I tried to breath through it. Dr. J frequently check with me to see if I had a reduction in pain. I had rated my pain a 6 on the 1-10 scale, with 10 being worst. That day my neck, head, shoulders, upper back and hips were painful. I did not feel any change as I laid there. He asked me to focus on my hips. Laying still I felt no difference, but when I moved my hips, I eventually felt a reduction in pain. After the test, upon standing, my right hip was free from pain, and my left was improved. There was no improvement to my neck, head, shoulders or upper back.

I remained nauseous for sometime after the test. I had driven my members, and did not feel well enough to drive right away, so it gave us an opportunity to stay and talk about the workshop. The test had zero effect on two of my members, and two of us had a slight decrease in our symptoms. For one member the pressure was too painful to bear. Her pain level had been very low to start the day, and after her reaction to the test, Whitcomb remarked he wasn’t sure why she was even being tested if she had no pain. He told the second member who did not experience any relief that she was just being difficult. When I remarked to him that I did not experience any relief in my upper body he said I just needed to have the test performed longer. We all felt underwhelmed by the experience. It did nothing to change my opinion of him that his care for FM patients is motivated most heavily by his bottom line.

Conclusion

The proposed follow-up with Dr. J was to involve an initial consultation, and then three consecutive days of treatment, which would require three visits each day. After the three days of visits he would reevaluate and propose further treatment. It is expected to take weeks or months for complete healing, and then there is likely to be maintenance to assure the meningeal release holds. Given that I have been in a flare since receiving the test at the workshop, and that the improvement I felt in my hips lasted only an hour or two, I called Dr. J and told him I was not interested in pursuing this treatment. He then told me hed decided not to implement the technique into his practice, and that he too was underwhelmed by the experience. I have to say I think he made a very wise decision.

So there you have my experience and my opinion on the matter. I feel like a little guinea pig, but I am happy to have had this experience to share. When Whitcomb had his Web site up, there were a lot of testimonials of people who swear by his technique. One of my members who attended the workshop has personally spoken with several of his former patients who claim to be symptoms free. She was considering attending his clinic and did a tremendous amount of research. She was the most hopeful of us last Friday that his technique would benefit her, but unfortunately she was one of the two it did not.

If Whitcomb comes to your community to teach his technique, I cannot recommend that you attend his workshop, but as we all know, what works for one will not for the other. Even after this particularly bad flare, I still plan to keep an open mind about treatment options available and useful to us. But I most certainly will not be having my meninges released anytime soon!

NOTE: On Tuesday October 27, FibroHaven was moved from a WordPress domain to its own URL. In doing so the comments of each and every post have been affected. They are no longer chronological or nested (if they were a direct reply to a previous comment). It happened on each post, but because this particular post has been so active it is especially troublesome to try and follow the comments logically. I apologize for this confusion and we are trying to fix it, but it appears it may not be possible.

I can assure you no censoring or editing of comments has occurred. If you are interested and brave enough, feel free to read the comments and try to piece them together. I do warn you against taking things out of context as that has already happened. To avoid any more confusion, I am turning off comments on this post until the issue is resolved. If you have something you absolutely must say in response to this, feel free to email me at fibrohaven@gmail.com.

Cheers,

Dannette

10/28/09

Fibromyalgia is a Puzzle!

Do you remember the press release I shared with you about Dr. Sarkozi and his new book The Missing Pieces of the Fibromyalgia Puzzle? Well he is the guest speaker at my support group meeting tonight. I am very pleased to have been able to schedule him.

Dr. Sarkozi is a rheumatologist specializing in the treatment of Fibromyalgia. His technique is a blend of traditional and complimentary treatment, which intends to promote effective self-managed wellness. I am looking forward to his presentation. I personally believe very strongly that our best health will not come from Western medicine alone, but in combination with the many alternative and complimentary treatments out there. You can be sure I will share with you the details of his presentation and my impression of his book.

Not Interested!

Interestingly, I have a few members in my group who are completely uninterested in hearing his presentation. To them it is just one more person claiming they have the answer. There are so many claims out there of “the” cure and “the” answer, which turn out not to be the answer at all – just a way for unscrupulous people to line their pockets off the desperation and determination of some very frustrated chronically ill people. I believe that every possibility needs to be explored and considered though, because what if it just happens to be even a part of “the” answers we are all so diligently searching for.

Free Your Mind and Your Meninges

I try very hard to keep an open mind. So hard in fact, on Friday I am going to a presentation for a new technique based on the teachings of one Dr. Whitcomb. You may remember I was none too pleased with this controversial chiropractor’s claims of a “cure” for Fibromyalgia. If you need a refresher you can read my rant here and here, but I warn you – I was in a BAD MOOD! (I just read back over both posts for the first time, and am shocked actually at the frustration and desperation behind my writing. I am just realizing that in the months that have passed, I have grown a lot through this blog, and am currently much more at peace and open-minded.)

The workshop I am going to on Friday is based on the belief that Fibromyalgia symptoms are caused by a build up of tension at the base of our skulls that causes irritation to the nerves. The build up can be caused by physical or emotional traumas (stress). The technique being taught in the workshop releases the tension in the meninges, thus releasing the irritation to the nerves.

What do you think? Does this sound like it could possibly be beneficial in the treatment of Fibromyalgia? I’m not sure either, and that is exactly why I owe it to myself, to my support group, and to everyone who reads this blog to check it out. Not sure if I am going to participate in the free demo, but I will certainly be taking notes. And you can be sure I will be reporting back on it as well.

Have you ever read The Road to Wellville by T.C. Boyle?  If you have not, you should.  It is a wickedly comic novel written by the most entertaining of contemporary American writers.  This whole business with Dr. Whitcomb, and his Lake Tahoe clinic, and his false promises of a cure for Fibromyalgia is reminiscent of it.

The real-life Dr. John Harvey Kellogg is fictionalized into one of the main characters in Boyle’s The Road to Wellville.  You might know Dr. Kellogg from the Corn Flakes you crunch occasionally for breakfast.  Yes, that most famous of breakfast cereals was actually invented by a doctor obsessed with healthful living.  T.C. Boyle’s fictitious story takes place at the Battle Creek Sanitarium, which was a popular health retreat in the late eighteen to mid nineteen hundreds, run under the controlling and obsessive eye of Dr. Kellogg.

In the thirty-one years of his directorship, Dr. Kellogg had transformed the San (…) to the “Temple of Health” it had now become, a place celebrated from coast to coast – and across the great wide weltering Atlantic to London, Paris, Heidelberg and beyond.  Twenty-eight hundred patients annually passed through its portals, and one thousand employees, including twenty fulltime physicians and three hundred nurses and bath attendants, saw to their needs.  Six stories high, with a gleaming lobby half the size of a football field, with four hundred rooms and treatment facilities for a thousand, with elevators, central heating and cooling, indoor swimming pools, and a whole range of therapeutic diversions and wholesome entertainments, the San was the sine qua non of the cure business – luxury hotel, hospital and spa all rolled into one.

 

And the impresario, the overseer, the presiding genius behind it all, was John Harvey Kellogg.  Preaching dietary restraint and the simple life, he eased overweight housewives and dyspeptic businessmen along the path to enlightenment and recovery.  Sever cases – the cancerous, the moribund, the mentally unbalanced and the disfigured – were rejected.  The San’s patients tended to be of a certain class, and they really had no interest in sitting across the dining table from the plebian or the pedestrian or those who had the bad grace to be truly and dangerously ill.  No, they came to the San to see and be seen; to mingle with the celebrated, the rich and the preposterously rich; to think positively, eat wisely and subdue their afflictions with a good long pious round of pampering, abstention and rest.  (Boyle 6-7)

So was the Battle Creek Sanitarium through the lens of the fictitious Dr. Kellogg.  But the characters in the novel had a very different point of view. 

After weeks of diet consisting of Bean Tapioca, Corn Pulp and Gluten Mush; and exotic treatments including shock therapy, laughter exercises, and daily enemas, the only thing patients were relieved of was their wallets.  The “positive thinking” Kellogg boasts of, was fostered by a controlled environment in which husbands were separated from wives, and each patient went through their daily routine under constant surveillance from their personal “attendants.”  All to keep order and control, and to make sure the San’s image was never tarnished.  Never mind the man shocked to death during his sinusoidal bath. Mention of that was almost as taboo as participation in anything carnal.

In The Road to Wellville, T.C. Boyle shines a bright and comical light on commercialism in the healthcare industry.  It is a fact, and it is nothing new.  Every time I see a commercial for the new Fibromyalgia wonder drug, Lyrica, I wince.  Not because of the drug itself, but because now that Fibromyalgia is becoming an accepted and recognized disorder, it will also become a profitable disorder.  More and more drug companies will be coming out with prescription drugs to TREAT Fibromyalgia, but not to CURE Fibromyalgia.  Why would they want to find a cure, when the alternative is so much more lucrative?

And then there are yahoos like Dr. Whitcomb who claim to have found the cure to Fibromyalgia, but instead of publishing it in a medical journal so everyone can benefit, he lures desperate patients to his clinic and promises them a lifetime of relief in return for their life savings.  But it turns out the relief is short-term and yet their money is still gone.  If you believe so much in your miracle cure Dr. Whitcomb, why not offer a money back guarantee?  Why, because you are capitalizing on your patient’s pain and desperation.  It seems to me you have a Kellogg complex Dr. Whitcomb.

But you don’t have to take my word for it.  Let’s hear directly from one of your patients why don’t we.  The following was a comment on the blog of a former patient of Dr. Whitcomb, Darden Burns.  Mrs. Burns was instrumental in bringing a lot of this to light.  She received several comments from other patients of Dr. Whitcomb and the following was left by Robin Storms.

I am also a former patient of Dr. Whitcomb. First of all, let me say this…BUYER BEWARE…he is a very charming man and makes everyone feel like they are special and that he really cares. It took me a long time to come to the conclusion that the only thing he cares about is his bottom line. The first time I went to his clinic I spent two months there. I left Lake Tahoe thinking I was cured and continued to feel well for a month after returning home. That was it…one month…then all of my symptoms returned with a vengeance. I followed his after care instructions to the letter, but was made to feel by his staff that I must have done something to make my neck “slip” which caused the relapse. I returned for one week last December, because Dr. Whitcomb said he had a new technique that he was teaching his patients to use. With this “technique” he said his patients were staying well after returning home. What a joke. The technique is nothing more than pressing up on the occipital bone and does nothing. It was during this visit that I brought to Dr. Whitcomb’s attention that just about all of my fellow patients had relapsed. I told him about one patient, a young 33 year old women, who was using a walker again because she was so sick. He told me three times during the week that he was going to call her, but never did. That just about says it all. That second trip to his clinic was very difficult for me. I saw the hope on the faces of the patients in the waiting room that they, too, were going to be “cured”. They reminded me of the wonderful group of people I spent two months with in his clinic, many of whom are now close friends. I knew that most of them, like us, had traveled a long distance to be there and were spending money they did not have. It broke my heart to know that they were being taken advantage of by a man who knows that his patients do not stay well. With that said, Dr. Whitcomb is still advertising and traveling to promote his clinic. On a recent television program that was broadcast on a Christian television station he stated that follow up care is rarely needed. This is simply not true and he knows it. – Robin Storms

It was after reading this post that I was made to think about The Road to Wellville and similarities between Kellogg and Whitcomb.  But I may as well compare them to the big drug companies too – companies that sell expensive drugs, which often have worse side affects than the conditions they treat.  I believe many enter the healthcare profession because they want to help their patients and make a difference, but sadly there are those looking first and foremost to line their pockets.  And this is why I care about the practices of a doctor I have never met.  He may not have directly taken advantage of me, but indirectly he has taken advantage of us all.