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Jay A. Goldstein, M.D.’s Unique Treatment Protocol for Chronic Fatigue Syndrome & Fibromyalgia

  [ 1953 votes ]   [ 61 Comments ]
www.ProHealth.com • March 3, 2003


By John W. Addington

Editor's note: As of April 2003, Dr. Goldstein has retired from medical practice and no longer maintains his website.

"Miracles are happening in the lives of Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) patients every day, thanks to Dr. Goldstein." That's how Katie Courmel, writer and CFS patient, sums up the benefits to Dr. Jay Goldstein's unique CFS/FM treatment protocol.

Dr. Jay A. Goldstein is director of the Chronic Fatigue Syndrome Institute of Orange, California. His background as a medical doctor is in psychiatry and family practice, but for a number of years now, he has specialized in the care of CFS and related disorders. Dr. Goldstein has lectured and written extensively on this topic, including his latest book, Betrayal of the Brain. To help explain Dr. Goldstein's approach in layman's terms, Katie Courmel has written the book, A Companion Volume to Dr. Jay A. Goldstein's Betrayal of the Brain.

CFS and FM as Neurosomatic Disorders

Dr. Goldstein's CFS/FM protocol revolves around his understanding of these ailments as neurosomatic disorders. In helping to define such disorders, Dr. Goldstein says patients afflicted "do not feel, think, or function properly because the brain does not handle information properly." According to his research, Dr. Goldstein believes brain circuitry and transmittal of data for proper bodily function and health have become altered in conditions like CFS. Further, Dr. Goldstein comments "how the brain, the immune system, and the hormonal system simultaneously regulate the function of each other…is usually 'out of whack' in various ways in patients with neurosomatic disorders."

Dr. Goldstein believes that neurotransmitters, chemical substances that act as information messengers in the brain, are abnormally low in this condition. Norepinephrine and dopamine are two such neurotransmitters lacking in CFS patients. When these are decreased, the brain has difficulty assessing relevance of the numerous messages it constantly receives. Because of this, mentally challenging situations such as taking a test or sensory stimulating situations such as a shopping at a mall can be overwhelming.

Another cause of this easily distractible state is elevated levels of substance P. Substance P is a chemical that transmits pain messages. Overproduction of substance P results in increased sensations of pain. Dr. Goldstein believes elevated amounts of this pain messenger found in CFS and FM are interrelated with their hypervigilant state, and can contribute to anxiety and panic attacks.

Cause of Neurosomatic Disorders

Dr. Goldstein enumerates four factors as influential in the onset of neurosomatic disorders. To begin with, persons can have varying degrees of genetic susceptibility to this kind of ailment. A second contributing factor is if during childhood one is made to feel unsafe for intervals of time. Such developmental problems can increase substance P and cause hormone levels to deviate. A third influence could be viral infection in the brain that alters proper neurotransmission. Dr. Goldstein describes the fourth factor as a potential outcome of the first three: "impaired flexibility of the brain…to deal with changing internal and external circumstances."

Despite all this talk about altered mental states, Dr. Goldstein does not believe that CFS is purely psychiatric in origin as some imply with the phrase "it’s all in their heads." Dr. Goldstein explains it this way, "The ludicrous and overly restrictive term 'psychosomatic' should be discarded into the rubbish bins of history. It states that apparently [unexplainable] symptoms must be a result of mysterious ‘unconscious’ conflicts which cannot be measured or even proven to exist."

Diagnosis

"Receptor profiling" is a method of diagnosis used by Dr. Goldstein to determine which of the brain's biochemical pathways are not functioning properly. This involves administering a series of drugs to the patient, one at a time. Each of these drugs is known to target specific brain pathways. Thus a patient responding to a particular drug indicates the brain pathway likely to be contributing to that particular patient's symptoms. Once that is known, various drugs that can normalize the faulty pathway are tried.

Katie Courmel lets patients know what to expect during their first appointment with Dr. Goldstein. "If you visit Dr. Goldstein's office, you may spend as much as two or three hours of your first day in an initial consultation with the doctor. This involves a detailed reading of your entire case history, with questions and answers interjected. During this period, Dr. Goldstein will begin his drug treatment protocol, starting with those drugs that have the most fast-acting profile. He may try naphazoline 110 eye drops, which may take effect within seconds. He may also try nitroglycerine under your tongue, which may act within minutes. You will then take a series of tablets or capsules that are longer-acting, taking effect within 30 to 45 minutes."

"Throughout this process, Dr. Goldstein will frequently ask how you are feeling. If you suffer from pain, he will check the sensitivity of a few select FM 'tender points' to help assess the effectiveness of a drug. If you suffer primarily from fatigue and find a drug that revives you, Dr. Goldstein may have you run up and down stairs to see if the drug really works. If cognitive disorders are a main complaint, you might read and discuss a magazine article after the administration of a drug that makes your head feel clearer."

Once this diagnostic process is complete, Dr. Goldstein will be able to tailor a treatment regimen specific for each patient.

Treatment Plan

Dr. Goldstein's primarily treats through the use of various combinations of medications. He explains his care this way, "The goal of therapy is to induce the brain to secrete the appropriate amounts of chemical neurotransmitters so that information to be processed will be selected appropriately. I have devised a decision tree which helps me to rapidly discover in most cases which brain chemicals and receptors might be dysregulated. This process usually takes about an hour at the initial visit.

I use medications which target one particular receptor and administer them in nasal sprays and eye drops. They attach to receptors on nerves in the head and may cause a patient to feel better, or sometimes worse, within seconds. I then may use other rapidly acting medications which affect the same, or related, receptors. My goal is that the patient feels completely normal. He/she remains in the office trying selected medications in succession until all symptoms resolve. This result requires an average of three office visits, but may occur in two seconds or two years."

There are several medications that have proven to be very useful for patients who have been bedridden for a year or longer. Dr. Goldstein calls these his "resurrection cocktail." A main component of this "cocktail" is ketamine administered intravenously or through a gel. Other components provided intravenously are ascorbate, lidocaine, and thyrotropin-releasing hormone. Nimotop and Neurontin, both administered orally, are also included in the list of medications most likely to aid CFS patients.

Most of Dr. Goldstein's CFS patients benefit from his therapy. Courmel says that 50% of patients feel dramatically better after the first day. Another 25% feel better the next day and eventually a further 20% substantially improve. That leaves 5% of patients that Dr. Goldstein is not able to help much.

Natural Treatments

PLEASE NOTE: DR. GOLDSTEIN HAS RETIRED FROM MEDICAL PRACTICE AS OF 2003. While Dr. Goldstein's primary focus was on drug therapy, there are natural treatments and nutritional supplements he recommended to his patients as well. These included Acetyl-L-Carnitine, Vitamin B-12, DHEA, Ginkgo Biloba, Ginseng Saponins, Gotu Kola, Honey Bee Venom, Kava Kava, and St. John's Wort (Hypericum).

Source Materials:

Courmel, A Companion Volume to Dr. Jay A. Goldstein's Betrayal of the Brain. (1996)

Galvin, Receptor Profiling as a Guide to Treatment
www.drjgoldstein.com/articles/receptors.html

Goldstein, Betrayal of the Brain (1996)

Goldstein, My Current Approach to Neurosomatic Disorders,
www.drjgoldstein.com/articles/neurosomatic.html

Goldstein, The Pathophysiology and Treatment of Chronic Fatigue Syndrome and Other Neurosomatic Disorders: Cognitive Therapy in a Pill
Alasbimn Journal, 2(7) (April 2000)

EDITOR'S NOTE: Dr. Goldstein's website is no longer active (www.drjgoldstein.com).


Please Discuss This Article:   Post a Comment 

The Strange Story of Dr. Jay Goldstein
Posted by: beagle99
Apr 22, 2011
Readers may be well advised to simply consult the Wikipedia entry for Dr. Goldstein, which is quite good. This MD retired involuntarily under the cloud of legal complications. He was known as sympathetic to the FMS/FM community but otherwise his treatments were simply off-label medications applied willy-nilly. His story is very similar to several hundred physicians who practice their own strange brand of bizarre medicine described on "Quackwatch." There is no medical literature or science related to the concocted term "neurosomatic." To read further, go to: http://en.wikipedia.org/wiki/Jay_Goldstein
Reply Reply

 
Dr. Goldstein was a treasure
Posted by: jbclem
Apr 24, 2011
How easy it is, on the internet, to spread ignorance anonymously, to use attack buzzwords without supporting information. "willy-nilly", "strange brand of bizarre medicine", "concocted". And associating Dr. Goldstein with Quackwatch, shows only that besides your ignorance, you must be a fool. Twice a year, for many years, Dr. Goldstein would come to our LACFIDS support group and give hour long presentations, and then stay for at least 30 minutes to answer questions and speak personally with us. His talks were the most anticipated of any, and our normal 40 person meetings would often more than double to 100 persons when he was on the agenda. Agree with him or not, there were few people who didn't appreciate the amount of work he put into trying to figure out our illness (CFS/FM). He was a treasure, the rare doctor interested in us, and caring enough to channel his considerable intelligence to our benefit.

Thinking back, I remember how my first appointment with Dr. Goldstein was at his Los Angeles home(south of Pico, btw), on a Saturday. This saved me, and others, from having to make the long drive to his Orange County office. I also remember the annual medical conferences he organized, I believe they were the first CFS conferences ever. The first one filled the ballroom at the downtown Biltmore hotel with doctors and researchers from all over the country.

I would like to echo all the sentiments expressed by thankyoudrgoldstein and add one other characteristic, one so rare in the medical profession: courage. He had the courage to try different ideas and treatments, to go against the conservative wisdom. Anyone with a chronic illness knows how few doctors fit this category. I never responded to the treatments I tried, but I've never stopped appreciating the hope that he gave me, and the knowledge that someone was trying to help me get better. I'm sad to hear that he gave up his license to practice and wish I knew the details.

John

 

 
Dr. Goldstein was a treasure
Posted by: jbclem
Apr 24, 2011
How easy it is, on the internet, to spread ignorance anonymously, to use attack buzzwords without supporting information. "willy-nilly", "strange brand of bizarre medicine", "concocted". And associating Dr. Goldstein with Quackwatch, shows only that besides your ignorance, you must be a fool. Twice a year, for many years, Dr. Goldstein would come to our LACFIDS support group and give hour long presentations, and then stay for at least 30 minutes to answer questions and speak personally with us. His talks were the most anticipated of any, and our normal 40 person meetings would often more than double to 100 persons when he was on the agenda. Agree with him or not, there were few people who didn't appreciate the amount of work he put into trying to figure out our illness (CFS/FM). He was a treasure, the rare doctor interested in us, and caring enough to channel his considerable intelligence to our benefit.

Thinking back, I remember how my first appointment with Dr. Goldstein was at his Los Angeles home(south of Pico, btw), on a Saturday. This saved me, and others, from having to make the long drive to his Orange County office. I also remember the annual medical conferences he organized, I believe they were the first CFS conferences ever. The first one filled the ballroom at the downtown Biltmore hotel with doctors and researchers from all over the country.

I would like to echo all the sentiments expressed by thankyoudrgoldstein and add one other characteristic, one so rare in the medical profession: courage. He had the courage to try different ideas and treatments, to go against the conservative wisdom. Anyone with a chronic illness knows how few doctors fit this category. I never responded to the treatments I tried, but I've never stopped appreciating the hope that he gave me, and the knowledge that someone was trying to help me get better. I'm sad to hear that he gave up his license to practice and wish I knew the details.

John

 

 
No quack
Posted by: janeyoctopus
Feb 15, 2013
I saw Dr Goldstein for a family doctor long before I needed him for fibro. Yes he was a genius! I read where he scored higher than any other doctor in Orange County, Ca. It was published in the paper. My dad was also a genius and I saw many of the same characteristics in my dad as Dr Jay Goldstein. That's one reason I kept going, his brilliance. Yes he did help my fibro. I was very upset the day he told me he was retiring. I'd give anything to hear him speak. Even if he doesn't practice, he could save people from so much pain. Many times he could do trigger point injections and I'd be feeling wonderful. He tried other things, many worked some didn't. But I had hope. He never quit trying. I believe there was a witch hunt, so many jealous because they weren't even close to this mans brilliance. I wish there was a way to bring back this wonderful man who could take away my pain. Thank you Dr Goldstein for the pain free days you gave me. Please let's find a way to bring him back!

 


The World Lost....A TOP PHYSICIAN...LIFE-SAVING!
Posted by: thankyoudrgoldstein
Apr 22, 2011
This is in response to the comment made that Dr. Goldstein is a "quack." I was a patient of Dr. Goldstein's, I sat for a week (the first week I met him) while he "willy nilly" (NOT!) tried different medications on me. For months I was so ill after a virus that began with a sore throat, a simple soar throat. I lost over 20 pounds (I had NO weight to lose). I had chronic flu symptoms, pain over my body that was UNREAL, and I could not get out of bed. My life was over at 37 years old! I had seen countless doctors and I had been hospitalized three times for 3-4 days each for comprehensive testing. NO ONE, NO ONE, could help me. Finally, two highly respected physicians from Loma Linda University Hospital told me to try Dr. Goldstein. I had read about him after a co-worker had the same experience/symptoms I had, she went, and after a few days with Dr. Goldstein he found the medications she needed and she felt nearly normal. Dr. Goldstein really was my "last hope" and after a week of meeting with Dr. Goldstein from 10 AM to 7-8PM daily (along with 5-6 other patients from around the country AND out of the country), he found the combination of medications that gave me back my life! He TRULY gave me my life back! Each time I went back (as Dr. Goldstein expected his patients to see him every 6 months to a year), I sat--for a day now--and again met patients from all over the country and the world, all of us had the same situation....NO ONE else could give us back our lives expect Dr. Goldstein. There were even patients that begged Dr. Goldstein's nurses to go to medical school (the patient offered to pay for it), so they would work with Dr. Goldstein and learn his methods. Dr. Goldstein is BRILLIANT! BRILLIANT! There is NO DOUBT in my mind that physicians who condemned him, were intimidated by him, and did NOT understand his level of medical understanding. It was--and apparently still is--much easier to call him a quack then to learn from a brilliant physician--that did something no one else could do--gave people with these chronic,unspeakable illnesses...their lives back! Oh and by the way, he gave MUCH of his own private money to help those who could not afford to pay. He spent a minimum of 12 hours a day at his clinic and then took all the info home--on the patients he was seeing that day--and stayed-up for hours going through the data so he could come in the next day with a well thought-out plan for your INDIVIDUAL body and system. What happened to Dr. Goldstein was a WITCH HUNT,conducted by physicians who were so narrow that they COULD NOT, and would not, consider that he knew something they did not know and were NOT capable of grasping. His brilliance and understanding was far beyond their understanding. THESE PHYSICIANS CONDEMNED ALL the people who suffer with these illnesses to a life...with NO LIFE! If any physician who was involved in this witch hunt had gone through what I had, or any of Dr. Goldstein's patients suffered with, they would be thanking God they had found Dr. Goldstein. SHAME ON THE MEDICAL COMMUNITY FOR FORCING OUT A MAN WHO GAVE THOUSANDS THEIR LIVES BACK! SHAME ON EVERY SINGLE ONE OF YOU! Oh, and ironically, many of his "controversial methods" are NOW being used by specialists who see patients with these "mystery illnesses." How about that!?!?! SHAME ON THIS WITCH HUNT! SHAME ON ANYONE INVOLVED IN IT, YOU TOOK AWAY ONE OF THE VERY FEW TRULY BRILLIANT PHYSICIANS...YOU TOOK AWAY PEOPLE'S LIVES! Dr. Goldstein, I hope somehow you read this. There is no way I will ever be able to thank you enough for what you did for me. There is simply no way to ever find the words, as there are no words for what you did for me. You're brilliance, compassion, hard-work, generous spirit, and utter and complete commitment to ridding your patients from their symptoms, has given all of us--your patients--our lives, and we will forever thank you and know how blessed we were to find you. What is it about such brilliance--such as yours Dr. Goldstein--that some find so intimidating, rather than a celebration as a gift to mankind. YOU ARE a gift to mankind, and don't EVER forget that!
Reply Reply

 
Were you helped?
Posted by: bcohen7719
Jul 4, 2011
were you helped, or did this doctor just hold your hand nicely?

 

 
re: Dr. Goldstein, very nice man--genius, no
Posted by: bcohen7719
Jul 1, 2011
Very nice to call someone a genius repeatedly, and also a very nice man. But who did he cure, exactly, and with what?

 

 
re: Dr. Goldstein
Posted by: beagle99
Jul 3, 2011
The above, passionate words about Dr. Jay Goldstein again reflect upon a very nice man. There are many nice men (and women) in medicine who veer off the wrong track with the best of intentions. Dr. Goldstein did his best to understand a disease for which there was practically no funded research. His notions were essentially all theoretical because he had no grist for the mill to work with. His methods of treating patients basically trial & error. He did his best, but he helped patients by basically holding their hands and providing psychological support. His books are regretfully convoluted theories--buy them if you wish, and God Bless you, but don't expect them to help you. I wish the situation in the research department was better today, but I don't see anything on the horizon. The "discovery" of a retrovirus has turned out to be more confusing then helpful. Sorry for the blunt words.

 

 
how can we see dr Goldstein
Posted by: mucmuc
Oct 30, 2011
i have been researching about chronic fatigue as my brother has very bad chronic fatigue and needs help urgently. i was wondering how we can get in contact with Dr Goldstein. thanks chis

 

 
How to Help Geniuses
Posted by: beagle99
Jun 5, 2012
If these accolades about geniuses in the CFS field are sincere, why don't you start Facebook pages praising them, or try to raise money for research fellowships based on their findings to train future doctors? Or a medical school named after Dr. So-and-So?

 

 
2013 FOLLOW-UP
Posted by: bcohen7719
Apr 28, 2013
How are you feeling now?

 

 
followup
Posted by: bcohen7719
Jan 18, 2014
How are is your condition right now? Are you able to move about, or has the situation deteriorated?

 


Specifics, please
Posted by: beagle99
Apr 24, 2011
What exactly are his methods?
Reply Reply

Dr. Goldstein was a treasure
Posted by: jbclem
Apr 25, 2011
How easy it is, on the internet, to spread ignorance anonymously, to use attack buzzwords without supporting information: "willy-nilly", "strange brand of bizarre medicine", "concocted". And associating Dr. Goldstein with Quackwatch shows only a tremendous ignorance of him. I was his patient for many years before he figured out the treatments that he became known for. I knew him as a thoughtful and caring doctor. Twice a year,Dr. Goldstein would come to our LACFIDS support group and give hour long presentations, and then stay for at least 30 minutes to answer questions and speak personally with us. His talks were the most anticipated of any, and our normal 40 person meetings would often more than double to 100 persons when he was on the agenda. Agree with him or not, there were few people who didn't appreciate the amount of work he put into trying to figure out our illness (CFS/FM). He was a treasure, the rare doctor interested in us, and caring enough to channel his considerable intelligence to our benefit. Thinking back, I remember how my first appointment with Dr. Goldstein was at his Los Angeles home(south of Pico, btw), on a Saturday. This saved me, and others, from having to make the long drive to his Orange County office. I'm sure he didn't have to work on Saturdays, especially considering the long hours spent working and commuting during the week. I also remember the annual medical conferences he organized, I believe they were the first CFS conferences ever. The first one filled the ballroom at the downtown Biltmore hotel with doctors and researchers from all over the country. I would like to echo all the sentiments expressed by thankyoudrgoldstein and add one other characteristic, one so rare in the medical profession: courage. He had the courage to try different ideas and treatments, to go against the conservative wisdom. Anyone with a chronic illness knows how few doctors fit this category. I never responded to the treatments I tried, but I've never stopped appreciating the hope that he gave me, and the knowledge that someone was trying to help me get better. I'm sad to hear that he had to give up his license to practice and wish I knew the details. John
Reply Reply

re: Strange Story of Dr. Jay Goldstein
Posted by: beagle99
Apr 26, 2011
To repeat the above query, what were Dr. Goldstein's treatments, and what proof exists that they ever worked?
Reply Reply

 
Posted by: jbclem
Apr 27, 2011
If you read the article above, Katie Courmel give a good description of the first visit and treatments, from the naphazoline eye drops, to the nitroglycerine under the tongue, and on to the longer acting drugs. I only went through the first couple of treatment visits and don't remember the names of the other drugs, but I ended up taking home pills that would take a day or two to produce an effect (if they did). For some reason, I didn't continue with this, although I remained a patient of Dr. Goldstein's basically under he stopped seeing patients here in LA. I do remember in his office there was an IV room and he had people on different drips, I think Lidocaine was one of them, and Vit C also. I also remember Nimotop and Neurontin.

I have a 6 page part of a review of his book, Betrayed by the Brain. It lists his most useful treatments as: nimodipine, gabapentin, oxytocin, baclofen, IV lidocaine. It also includes a description of one patient he treated with different drugs and how they worked for her. She used nimodipine (to regain cognitive function), mestinon, and nitroglycerine for relieve of the fatigue.

I use this 6 page review as a reference all the time for it's really good descriptions of how the brain (and cognitive function) is affected by CFS and FM. Here's the section I refer to the most as it describes one of my problems so well:

>Spect scans show anterolateral and dorsolateral hypoperfusion, the right hemisphere worse than the left. The right hemisphere deals mostly with novel situations and uses norepinephrine. Norepinephrine is crucial to cognitive novelty. The left hemisphere deals mostly with repetitive, well-routined, pre-learned activities and uses mainly dopamine. Dopamine is critical to cognitive routinization. Flu-like illnesses are known to deplete brain norepinephrine <

I can't tell you how many slides Dr. Goldstein showed us of SPECT and PET scans of the brains of CFS, controls, and Depressed patients, but I'll bet I've see a hundred, all showing the low blood flow and low functioning of the specific parts of the brain in CFS patients.

Sorry, I'm getting away from your questions. To answer the last one: in the large support group I helped run, I never ran into anyone who had been really helped a lot by these treatments, but that was just from casual conversations. I know Dr. Goldstein would always say that he had a high percentage of responders, I just never ran into the ones who had shown measurable improvement.

If you read Dr. Goldstein's writings, you'll see he made a serious effort to figure out this illness, so I don't blame anyone for trying his treatments. Myself, I've been to Italy for experimental treatments, and across the USA to S.Carolina for the same, and gone to Mexico to buy drugs I couldn't get here. That's the nature of the beast.

If you'd like a copy of these 6 pages, send me an email address and I'll send them to you as an attachment.

John

 

 
Treatments worked
Posted by: janeyoctopus
Feb 15, 2013
Treatments worked on me. Gave me my life back, pain free. Research and find the article where dr Goldstein tested higher than any other doctor taking the test that year. That alone will show you his genius! I'm crushed they took away my pain free future. That is cruel.

 


continuing the strange story
Posted by: bcohen7719
Apr 27, 2011
All of the comments indicate a portrait of a most deeply appreciated physician and even friend. He was a very nice man. None of Dr. Goldstein's medication therapies have ever been proven to assist patients in any double-blind studies in established medical journals. They are all anecdotal stories. If individual patients choose to feel they were cured or made better by these drug treatments, then God bless them. Otherwise, spreading uncritical "treatment evangelicalism" does more harm than good. Many thanks for the offers to share Dr. Goldstein's writings. I am well acquainted with them, and how they were published.
Reply Reply

continuing the strange (or sad?) story
Posted by: beagle99
May 3, 2011
No one has yet indicated any medication prescribed by Dr. Goldstein which actually helped them. This is not to deny he was a very kind and caring man At the same time, it is not helpful to induce others that the treatments of a genuinely kind and caring physician were "ingenious" or "revolutionary" or "miraculous." These adjectives might describe the physician's personality, but not the medications. I say this with some sadness. The points are well made that in Dr. Goldstein's day, the vast majority of CFS and FMS patients were shunned as malingerers or psychiatric cases. Jay really did try and try and try to help. There are also many MD's around today who traffic relentlessly in the misery of CFS and FMS patients.
Reply Reply

response to beagle99
Posted by: knowsmorethanbeagle
Jul 8, 2011
Beagle, you don't know what you are talking about. Dr.Jay Goldstein was brilliant, and a pioneer in the treatment of ME/CFS. If you want to find out what his treatments were, go to The CFIDS Association libary, in publications from 1991 through at least 1995, for extensive "Grand Round" articles explaining his protocols in detail. He was at least partly a victim of biased physicians (yes, if you have ME/CFS and are not paranoid, you are crazy) who could not abide a far-sighted physician treating an "hysterical" condition with a multitude of drugs. ME/CFS is where multiple sclerosis was as a disease in the decades before a marker was found for it. It was considered a woman's disease (wrong), and definitely "in their heads" (also wrong). Once a marker of the disease was found, it became a real disease. We can only hope in the near future much more money than is now devoted to finding a marker or treatment is targeted to find one or more markers for ME/CFS. In FY2012 the NIH is budgeting $6 million in funds for ME/CFS with 1-4 million sufferers. It is budgeting $135 million for MS with 500,000 sufferers! And in 2007 HIV/AIDS received $18.9 BILLION!! Dr. Goldstein was a doctor who will be proven right with time, just as so many visionary physicians before him have been, while being slandered and vilified before the truth about the illnesses they treated was known. In the meantime, the ME/CFS community has been robbed of a compassionate, extraordinarily knowledgable physician, in a field where there are so few who fit that label. Incidentally, there are no medical schools in the country that teach even one course in ME/CFS, its diagnosis and treatment. Is that because it's not real or just a true reflection of how backward the medical establishment is? If you have ME/CFS, you know the answer to that one.
Reply Reply

 
re: Jay Goldstein "brilliant"
Posted by: bcohen7719
Aug 9, 2011
The previous poster clamors that Dr. Jay Goldstein was brilliant.

What is the evidence?

It is not enough for a physician post a series of case studies about various patients, nor give them a dizzying array of drugs asking them which makes them feel better or worse. This is not "brilliant."

The previous poster should come back with examples of breakthrough, proven treatments that Dr. Goldstein has published in peer-review medical journals. Posting case studies or non-peer review books is akin to posting videos on Youtube.

 

 
What is meant by "brilliant"?
Posted by: bcohen7719
Jul 17, 2011
What is meant by "brilliant"?

Dr. Goldstein may well be remembered fondly as brilliant in his compassion and friendship. He was a pioneer in CFIDS patient relations. He was a good man.

Regretfully, a "Grand Round" commentary or description of one's personal approach to treatment, and to boot, unproven treatments, does not represent "brilliant" in the annals of medicine. Our truly brilliant medical leaders in this arena are yet to evolve.

 

 
Does Being Nice Mean that You are Brilliant?
Posted by: bcohen7719
Jul 19, 2011
I'm also a nice person, but don't claim I'm brilliant or expect other people to think so. Dr. Goldstein was an enormously nice man, and helpful in an interpersonal way with patients. However, this understandable appreciation of his fine character doesn't mean he discovered any cures for either CFS or fibromyalgia. He just tried very hard. If any of those drugs helped anyone, then again--God bless you. If he really discovered "real cures" then we wouldn't have CFS and fibromyalgia anymore. We'd all be cured.

 


Dr Goldstein's Treatments
Posted by: grateful patient
Aug 23, 2011
In response to beagle99 who asked which treatments administered by Dr Goldstein worked I offer the ones that helped me. Firstly, I researched the illness and looked at what was on offer in Australia, the UK and USA before seeing him. My exhaustive research paid off because he was able to diagnose me with (1) Chronic Fatique Syndrome, (2) Fibromyalgia and (3) Repetitive Strain Injury; the second and third conditions are what he called overlapping syndromes. Previously despite seeing many doctors in Australia, I could not get a complete diagnosis. I naturally found repetitive strain injury very limiting and after twenty minutes of using my arms in a repetitive manner I would have horrific pain from my arms to the middle of my back which would last for one week. I received an immediate response from Dr Goldstein's recommendation of nitroglycerine patches, a heart medication. It is interesting to note at this stage that he used prescription drugs in alternative ways. I used the patches as a preventative measure and applied half of one before I intended to use my arms for drawing, painting or typing. I simply couldn't type this long piece without his intervention. I went on to earn a degree in Fine Art at University and although it took me a long time due to the fatique, I achieved something that would otherwise be impossible. I would still be waiting for some other doctor to come up with a treatment some sixteen years later if it wasn't for him. When I told a researching immunologist from Sydney about this treatment he was absolutely spellbound. The patches encouraged blood flow and made all the difference to my life. I tried another treatment recommended by him which is a magnetic pulse and creates oxygen and blood flow. It is a disc-shaped device I wear around my neck 24 hours a day and because of it I have near perfect sleep. Previously I would be wide awake from about 2 am to 5 am which is another miracle; it also helps with pain. Incidentally it is detrimental to have disruptive sleep and it can cause heart problems. There are clues here in the way these two treaments worked: they encouraged blood flow and this was an important finding when Dr Goldstein along with Dr Mena utilised for the first time brain spect scans and discovered reduced blood flow to the brain in patients. This was performed in the late 1980s and Dr Sarah Myhill said is is the most important discovery related to the illness. I feel this provided the foundation for his treatment regime and he did not use them "willy nilly". He had to try different treatments on his patients to see which ones worked. He told me it depended on the cells involved in the individual and that later a computer would indicate what would work for the patient. In his surgery (I saw in in 1994 and 1995) I witnessed several people who had their lives changed by his treatment regime. They would squeal with delight and you knew they had been relieved of their symptoms. There was a fairly quick response and he knew how long it would take to be effective because he told us the time frame. My GP in Perth told me that Dr Goldstein had an excellent knowledge of pharmacology. I bought one of Dr Goldstein's books for another GP to read and he said he knows buckets more than me. Those being honest admitted it and when in Australia last year on a lecture tour, Dr Hyde told the audience he is the best physician he has ever seen. Even another US researching doctor told a friend of mine he was way above his head. I had regular contact with him by phone from 1994 until his retirement in 2003 and guess what? He never charged me for any of these consultations. Who else would do that? He became my mentor and I was constantly amazed by his high level of intelligence, his willingness to share the information and treatments and generous nature. He is the most intelligent and talented person I have ever met. I always felt I should have ten doctors helping me out during the phone conversations but they weren't interested so I handled it myself and wrote many articles for newsletters in Australia regarding his work. I constantly had patients and doctors tripping me up and replacing it with substandard work that usually reached dead ends which I put it down to egos and jealousy. His focus on brain dysfunction was covered extensively in his books and at the 1999 conference in Belgium a general consensus was reached declaring Chronic Fatique Syndrome a brain dysfunction disease with a biochemical cause. It took a long time didn't it? I know of a researching immunologist who has in the last five years only just started looking at the brain after approximately researching the illness for twenty years. They naturally focus on their area of expertise and he was researching the immune system before waking up to the brain implication despite being well aware of Dr Goldstein's work. His work is not quackery as there is solid science behind it and I believe he is at least 20 years head of his time. It sure is taking a long time to re-invent the wheel. Only a couple of months ago I read where some Adelaide researchers produced a paper indicating white specks surrounding the brain. Funny that, I saw a photo of a biopsy in Dr Goldstein's surgery in 1994 which showed white specks surrounding the brain. They can only grasp small sections of his work and replicate that without acknowledgment. I am glad he has documented it in his books published by Haworth Medical Press and his 40 published papers. They can't take that away from him! I do know that although some doctors are using sections of his protocol he is disappointed no one took it up and although beagle99 mentioned trials I would like to know who would fund them. Certainly not Dr Goldstein he had been more than generous. He went on with helping his patients and fast tracked his research. It's a pity the others aren't like him. He should be lauded for his outstanding contribution and like another US doctor said he has made the biggest contribution to research for this illness.
Reply Reply

 
re: wily-nilly off-label treatments
Posted by: bcohen7719
Oct 23, 2011
If nitroglycerine patches or magnets "cure" brain perfusion (abnormal flood flow) then this miracle would be spreading like wild-fire. Give me a break.

 

 
"SORRY, NO CIGAR"
Posted by: bcohen7719
Sep 7, 2011
It is wonderful that nitroglycerine patches helped one of the patients above; that Dr. Hyde admired Dr. Goldstein; and that comments the reactions to individual medications varied in efficacy due to individual patient differences.

This is not the measure of medical science. It is at best one's personal recommendation, and at worst, just gossip.

Posters should stop trying to convince one another that "blueberries are the cure!" or "Dr. Fiddlesticks is a GENIUS! SEE HIM IMMEDIATELY."

Regretfully, progress in medical science is slow and plodding and takes place in major scientific journals such as "Nature" and the "New England Journal of Medicine."

Those who argue there is a conspiracy theory to prevent cures from being published in the top-ranked journals are welcome to present details of these theories. After reading some of these, I don't know whether to laugh or to cry.

I knew both Dr. Hyde and Dr. Goldstein. Dr. Hyde self-published his own book; Dr. Goldstein's books were "trade books" (popular books) published under a medical-sounding imprimatur. They were never reviewed positively in any major medical journal. All of their writings were mainly theoretical notions. The treatments were indeed "willy-nilly": try this, try that, whatever might seem to work for one patient was good for that patient, and that was the end of that. Neither physician has his writings cited by mainstream researchers in CFS or fibromyalgia. Both Dr. Hyde and Dr. Goldstein were very, very nice men. There are many, many nice men who are not "geniuses" or "pioneers" simply because they were nice. I wish this were otherwise--the world would be a better place.

 

 
Dr Goldstein's treatments
Posted by: pepimac
Sep 3, 2011
Dr Goldstein sounds like a gifted and exceptional physician and it is a shame for ME/CFS sufferers like myself that he has retired from practice. I would be greateful to know about any medical practioner in the UK, where I live, who is able to apply any of Dr Goldstein's protocols. Aditionally, I am hoping 'grateful patient' might let me have more information about the disc shaped device that uses a magnetic pulse to improve sleep. I have tried everything to no avail, and the last doctor I consulted ridiculed me when I told him I'm convinced I don't get enough oxygen to the brain as my symptoms worsen when I visit a polluted city. I would like to write more but this is all I can manage at the mommnt.

 

 
...and what happened?
Posted by: bcohen7719
Jun 2, 2012
What happened to your condition and efforts at symptom control?

 

 
re: more cures
Posted by: beagle99
Jun 5, 2012
Have you tried crystal therapy yet? A Youtube video proved this. It's sweeping across the nation. Everyone must do this or else they are in cahoots with "Nature" and mainstream science and Big Pharma. Dr. Oz hasn't explained this yet, but we're all waiting for Oprah.

 

 
FOLLOW-UP, PLEASE!
Posted by: bcohen7719
Apr 28, 2013
How are you feeling now?

 


In Appreciation of Dr Jay A Goldstein
Posted by: grateful patient
Oct 27, 2011
bccohen7719 you have misconstrued my posting. I never used the word "cure" and said it was a preventative measure. I suggest you re-read my posting and read Dr Goldstein's books as you clearly haven't and are not focusing on his body of work. Drs Cheney and Lapp use part of his protocol and as I said in my original posting it depends on the cells involved in the individual patient as to which treatments benefitted and produced a positive result. I was responding to beagle99 who asked which treatments benefitted patients and I explained them and how they worked. As far as medical science moving slowly you obviously do not know that magnetic field work dates back to the ancient Greeks, Romans and Egyptians. Papers have been published by NASA scientists and also doctors from RMIT, a University in Melbourne, Australia. NASA have fairly recently focused on it - long after Dr Goldstein's suggestion - and there is information on the net. It states that bio magnetic therapy is now sweeping the US. Grateful Patient
Reply Reply

 
Bio Magnetic Field Therapy
Posted by: grateful patient
Dec 29, 2011
That's right bbcohen you have no idea! There is plenty of information on the net stating that it is sweeping the USA. Dr Pawluk has been treating a wide range of conditions with it for some time. In Melbourne, Australia at a leading hospital they are using it for people with major depression and in a clinic on the opposite side of the country as well. Russian scientists and NASA embrace it.
You are not looking beyond Science and Nature medical journals for information otherwise you would realise there is credible, ground-breaking research on offer. The Science journal got it wrong anyway and have retracted the published paper on XMRV which incidentally has been acknowledged as one of the top ten scientific frauds for 2011.
I find it incredible that you use this forum to attack instead of dealing directly with the authors of the research. As you say you knew Dr Goldstein I would have thought you would have challenged him instead of going behind his back on this forum.
It is time you took your blinkers off.
Grateful patient.

 

 
more dribble
Posted by: bcohen7719
Dec 21, 2011
I had no idea that "biomagnetic therapy was sweeping the USA."

What dribble!

 

 
"Biomagnetic Therapy Sweeping the USA..."
Posted by: grateful patient
May 2, 2012
Try and stop it bcohen!

Grateful Patient.

 

 
re: "Biomagnetic Therapy Sweeping the USA..."
Posted by: bcohen7719
Apr 29, 2012
No, I for one had no idea that "biomagnetic therapy" was sweeping
across the USA.

Really?

 


In Appreciation of Dr Jay A Goldstein
Posted by: grateful patient
Oct 28, 2011
Pepimac - I am sorry I have only just read your posting. The magnetic pulse I use was from a scientist in Perth, Australia and I am sorry I don't know of any in the UK. The scientist's e-mail addresss is john@bodybuz.com.au. I am also aware of a doctor in the US Dr Pawluk who also sells them. Dr Goldstein published the brain spect scans showing decreased blood flow to the brain in his book, "The Limbic Hypothesis" if you wanted to show them to your disbelieving doctor. I am sorry you are having a tough time convincing your doctor. NASA have published a paper on the benefits of magnetic field therapy and on the net it mentions it is good for RSI (repetitive strain injury) which is what I also have and you would have read about it in my posting. If you google NASA pulsating magnets you should find it (not the top listing though) I hope this answers your queries and you are feeling ok. Grateful Patient
Reply Reply

 
...and?
Posted by: grateful patient
May 2, 2012
Read Dr Pawluk's website for information and you will also see comments by Dr Oz on how the treatment works for a variety of conditions. Then check out his You Tube video and you will see how excited he is about the treatment (two other doctors are featured including Dr Pawluk. Google You Tube Dr OZ Electro Magnetic Field Therapy. This was from his show in November 2011. Dr Goldstein told me about treatment in 1998 - that's how far ahead he was in his research and treatments. A Californian Professor told me he had the best handle on the brain.

There are testimonials if you do further research bcohen and as I said previously it helped me with pain relief and sleep. It does create oxygen and blood flow.

Instead of arguing why not read Dr Goldstein's books and 40 published papers because there is no foundation to your argument regarding his work.

Dr Oz explains it very well even you bcohen will understand.
Signed Grateful Patient

 

 
...and?
Posted by: bcohen7719
Apr 29, 2012
Did you have any luck increasing the blood flow to your brain?

How was this done?

 

 
"john@bodybuz.com.au" out-of-business
Posted by: journaltruther
Jun 12, 2014
The above email address produces a dead link. The proposed physician is not named.

 


Dr. Jay Goldstein's Neurological Impairment
Posted by: bcohen7719
Apr 28, 2012
In the current issue of "Quackwatch," under "Fibrowatch,' Dr. Jay Goldstein is listed amongst 19 physicians practicing therapies involving fibromyalgia disciplined by licensing boards.

The stipulation filed (see below) indicated that Dr. Goldstein acknowledged that he suffered a neurological impairment that prevented him from practicing medicine safely.

Does anyone know what this neurological impairment was?

This is very sad.

----------------------------------------------------
http://www.fibrowatch.org/reg/board.shtml
Reply Reply

Agreed, in part
Posted by: bcohen7719
May 19, 2012
I agree with all of your socio-economic points about the bias against CFIDS, adding that it is the outrageous tendency of practicing physicians who cannot determine a diagnosis via ordinary office-based lab work to conclude that the patient is suffering psychosomatic or psychiatric problems. They just want to get the patient out of the office and go on to the next, for economic reasons. However, this does not relate to Dr. Goldstein, by all accounts a kind and caring man, and known to me as such. However, he was not a genius except in his genius for human understanding. I'm not sure what definition of "genius" other people are using on this forum, but a genius to me in medicine means concrete, measurable, reproducible results based on solid scientific benchwork. Dr. Goldstein's books are regretfully summations of personal theories, ruminations, contemplations, puzzlements, and contemplations. I've read them all. Nowadays, they are rarely cited, if ever, by any scientists doing new research on CFIDs except those who like to show a comprehensive bibliography. I have no ax to grind against Dr. Goldstein, and only remain aghast at those who blur kindness with genius. Were this only so in this world.
Reply Reply

Wrong Again!
Posted by: grateful patient
May 21, 2012
The term genius has been used to describe Dr Goldstein by other researching doctors and a Harvard doctor so it is not just patients using this description. I think it is arrogant of you to put yourself above a genius to judge him and then dismiss his work. What an ego you have! I also wonder why you have never challenged Dr Goldstein directly instead of going behind his back. You have blurred ignorance with arrogance. Just because his work is above your head and a lot of doctors too, it doesn't mean it isn't relevant. It is highly relevant today and as I pointed out previously Drs Lapp and Cheney use part of his protocol. What about brain spect scans used routinely all over for testing patients with the illness? These were introduced as a test for patients proving decreased blood flow to the brain. These were introduced by Drs Goldstein and Mena back in the late 1980s. Or Diamox introduced by Dr Goldstein to provide relief to his patients who also had migraines (a Harvard doctor thanked the patient for informing him of that one). And then there's Dr Sarah Myhill who said the brain spects scans were the best discovery for the illness and not to mention the researching doctor who said Dr Goldstein has made the biggest contribution. Also his Case Histories in the books are not assumptions and I feel that these patients would be deeply offended by your comments.
It is easy for you to dismiss it because you simply cannot comprehend the work. Perhaps you should stick to Nature, the journal you are counting on. This is the same one that published a paper presenting the illness as a mental condition. They then published an apology buried in a follow up edition and have never touched the illness since. Is this really your style?
The way Dr Goldstein has been treated reminds me of the two Professors - Marshall and Warren - who discovered that ulcers were not caused by stress back in the 1980s. They too received a hugh amount of flak for a very long time that is until they won the Nobel Prize for Medicine. They proved that ulcers were caused by bacteria and they came up with a cure.
Other doctors do use his work it's just that they do not acknowledge him. Egos get in the way.
It is time you revealed your real reasons for attacking him. Also that you were the former owner of the company (Haworth Medical) that produced his brilliant books until you sold out. The company then did away with Chronic Fatique Journals.
Reply Reply

 
what is the current upshot?
Posted by: journaltruther
Jun 12, 2014
I lost track of these commentaries and counter-commentaries.

I still remember Dr. Goldstein as a most kind, devoted, and caring physician. He was a gem as a person.

To the best of my knowledge, no therapies he recommended are recommended cures for either fibromyalgia or CFIDS. (If any individual patients here absolutely feel they have been cured, again--God bless you). To the best of my knowledge, the causes of CFIDS and fibromyalgia are largely still unknown. To the best of my knowledge, any definitive cures or therapies for CFIDS or fibromyalgia are largely unknown except, to an extent, a small group of drugs for fibromyalgia that might help with some symptoms (lyrics, cymbalta or savella), and off-label use of sodium oxybate (Xyrem). All these drugs have difficult-to-deal-with side-effects.

I still maintain it is plain wacky to deify any physician or scientist because a few others claim they are. It is irresponsible to urge therapies upon others as if you were trying to convert their religion.

 


in reply
Posted by: bcohen7719
Jun 3, 2012
If all of this helped you, then again, God Bless You. Please just don't over-promise by implication that what you think helps you a great deal would necessarily help other sufferers. Everyone is different. Those who urge their own experiences upon others are sometimes almost religious in their fervor, and this is what I object to. The raising of any medical figure o an almost impossible level of authority and genius without global evidence is, let us reasonably say, premature.
Reply Reply

 
reply to bcohen7719's comment
Posted by: gratefulmanyX's
Jun 15, 2012
In reply to bcohen7719's comment:
"Please just don't over-promise by implication that what you think helps you a great deal would necessarily help other sufferers. Everyone is different. Those who urge their own experiences upon others are sometimes almost religious in their fervor, and this is what I object to."

Your condescending comments are a display of ignorance. You are not addressing uneducated people here, many of Dr. Goldsteins patients are/were extremely well-educated people. But what if they weren't? Does that discount the fact that they were significantly helped? One DOES NOT need a scientific study to deduce that his methods worked. His success was obvious! During the many years I saw Dr. Goldstein, I encountered literally hundreds of patients ALL of which had massive relief from their symptoms. Their greatest fear was "What happens to us, if something happens to Dr. Goldstein?"
You, bcohen7719, quite obviously have an agenda, and your apparent lack of understanding of the tremendous inroads Dr. Goldstein made into treating these illnesses is historical. As I commented over a year ago, there are those who are just plain intimidated by another individual's brilliance, and you, bcohen, are--obviously--one of them!

One final comment, if you knew anything about Dr. Goldsteins methods you would know, he--of all people--understands "Everyone is different," hell is methods are/were based on THAT!

 


I Haven't Oversold Dr Goldstein
Posted by: grateful patient
Jun 7, 2012
I can only express how I feel and the respect I have for his insight and wanting to relieve his patients of the symptoms associated with this awful illness.

My experience and others would differ due to the symptoms associated with our particular situation.

I do not and have never over emphasised anything in my life and simply wanted him to receive the respect and recognition he deserved and if it helped other patients through my postings them I am thrilled.

Recently another well-known researcher presented research using Dr Goldstein's information connected to brain dysfunction and there was no mention of where the information came from at all. Those who do it only can grasp small sections of the work anyway and set about re-inventing the wheel. This is simply not good enough.
Reply Reply

 
reply to bcohen7719
Posted by: gratefulmanyX's
Jun 15, 2012
In reply to bcohen7719's comment:
"Please just don't over-promise by implication that what you think helps you a great deal would necessarily help other sufferers. Everyone is different. Those who urge their own experiences upon others are sometimes almost religious in their fervor, and this is what I object to."

Your condescending comments are a display of ignorance. You are not addressing uneducated people here, many of Dr. Goldsteins patients are/were extremely well-educated people. But what if they weren't? Does that discount the fact that they were significantly helped? One DOES NOT need a scientific study to deduce that his methods worked. His success was obvious! During the many years I saw Dr. Goldstein, I encountered literally hundreds of patients ALL of which had massive relief from their symptoms. Their greatest fear was "What happens to us, if something happens to Dr. Goldstein?"
You, bcohen7719, quite obviously have an agenda, and your apparent lack of understanding of the tremendous inroads Dr. Goldstein made into treating these illnesses is historical. As I commented over a year ago, there are those who are just plain intimidated by another individual's brilliance, and you, bcohen, are--obviously--one of them!

One final comment, if you knew anything about Dr. Goldsteins methods you would know, he--of all people--understands "Everyone is different," hell is methods are/were based on THAT!




 

 
Expressing Gratititude
Posted by: journaltruther
Jun 7, 2012
You should do your utmost to get in touch with Jay, if not done already, to express
these warm and heartfelt sentiments. Now it is clearer that you are describing an improvement in symptoms, not a cure.

It is serve's Jay's memory well that you don't over-sell him. He is such a sensitive person. It saddened him when patients did not do well despite his efforts.

Why, in CFIDS and fibromyalgia, is every patient so different? I don't know. I don't think any scientist knows. There is some talk of "sub-types" in the literature, and one genome for a subtype for fibromyalgia has been suggested already. There are, I understand, over 200 different types of the common cold, so why should it surprise us that there many be multiple different sub-varieties of CFIDS and fibromyalgia. Certainly the myriad stories we hear, so baffling from patients in different situations and conditions, point in this direction.

This discussion now takes a more positive turn. How can it be argued that reasonable restraint from over-selling any specific suggested remedy, or that raising the image and memory of magnificent, kind physicians into super-scientists, is wrong-headed, contributes in any way to our special community? We are, in a sense, a family after all.

 


Dr Goldstein's Contribution
Posted by: grateful patient
Jun 17, 2012
GratefulmanyXs your comments are appreciated and haven't gone unnoticed! Talk about making "inroads" to the debate.

And yes Journaltruther Dr Goldstein does know how much I appreciate the way he helped me when others couldn't.
Reply Reply

follow-up
Posted by: bcohen7719
Dec 3, 2012
Some time has now passed.

Has Dr. Goldstein's theories or treatments been proven miracle
cures yet....for anyone?
Reply Reply

Dr Goldstein's Treatments
Posted by: grateful patient
Dec 3, 2012
The problem is that you BCohen continue to refer to his treatments as "cures" and you are the only one calling them that which is what I previously explained when you miscontrued my earlier posting. They relieved patients of their symptoms and of particular note is my case as previously explained and a friend who used Diamox, a treatment he used for migraine sufferers and introduced. Why wouldn't people be happy with such results?
Whilst you are doing your utmost to denegrate him, you published and sold his books and didn't mind making money out of it. You would have received more for the books than he did! So while you were happy to reap the rewards, you now have launched into an unrelenting attack behind his back. It says a lot about your character and I think you are doing a wonderful job of destroying your reputation, not his.
Reply Reply

What Are Your Motives BCohen?
Posted by: grateful patient
May 6, 2013
His patients have explained their responses yet you now ask for follow ups. Why can't you grasp their postings? You continue to demand information and then attack them and Dr Goldstein. Why did you publish his books in the first place if you don't believe in his treatments? You haven't tried them so it hardly makes you a suitable person to comment. I have it on good authority that he is shocked by your comments. You had plenty of time to challenge him yet you did not choosing instead to go behind his back. You know that his level of intellect is far superior to yours and that you would come off second best. This is a weak way to deliver your attacks.

Now please explain your motives. That is all you have left to do.
Reply Reply

Jay Goldstein
Posted by: kenpaden
Nov 2, 2013
I have to jump in here...I am dumbfounded by the comments about Dr Goldstein. I saw him for a few times in 1990 and 91. He was the the rudest most belligerent , doctor I have ever dealt with. The staff were also terrible to deal with. The first time I saw him I was working full time and he told me I had a relatively mild case, and would make a full recovery in 18-24 months.I have been totally disabled since 1992. As I got worse and was having to cut back on my work , he refused to help me apply for disability and when I got to where I couldnt work at all he couldn't have cared less. When I reminded him what he told me when I first saw him he blew up and screamed at me at the top of his lungs..that was not the first time , but it was the last, I never went back after then. I know I can't prove anything but for proof of his lack of credibility, just look at what he says in his books that he is able to get 90% of his patients back up to 90%. Look at any objective website like the CDC, no one can make those kind of claims. I went from working full time to having to stop working, thats what he did for me. I am glad he is not practicing....I hope he never comes back and my review helps any possible confusion about him if he ever does come back.
Reply Reply

 
re: cure rates of 90%
Posted by: journaltruther
Dec 25, 2013
Regretfully there indeed aren't any "cure rates" for CFIDS or fibromyalgia reaching
the 90% level. There aren't any cures whatsoever for CFIDS. There are now three
FDA approved drugs for fibromyalgia. They may blunt the neurological symptoms
for a few years until the body adjusts to them. Then one is stuck again.

Speaking as someone who viewed Jay as a kind and compassionate man,
I have no idea why he thought he made these claims. Possibly it was the
physician equivalent of the placebo affect: he wanted so badly to help people.

Unfortunately books with treatment protocols are not put through any type of
scientific rigor, nor peer reviewed. The Goldstein books are best put aside
for anyone looking for information based on evidence, not one physician's hopeful
(but ultimately unhelpful) perceptions.

Those patients who read this website and who believe Jay cured should of
course be listened to with kindness and compassion. B

 


Reply to kenpaden
Posted by: jordan!1
Nov 26, 2013
I only became aware of this stream of comments regarding Dr. Goldstein last year, and am an infrequent visitor to the site. I am sorry you had such a bad experience with him. Yes, the office was busy and there were times patients did not get the idividualized attention and positive concern that was expected of them. We had staff turnover because we would not put up with rudenes to- or from- the patients.I am sorry you believe you were not treated well by Dr. Goldstein. His primary concern at all times was the well-being of his patients. I have been married to him for 35 years and I have never seen him blow up or scream at anyone.He worked 6 to 7 days a week, and was never home before 9 pm, often too tired to eat.He spent his life trying to help people; many have been helped and are grateful, some, because they believe they weren't helped, are bitter and angry. Some, for reasons of their own, have chosen to smile and compliment him to his face and stab him in the back.All the above would fill another book. All I know is that I love and admire him for his singlemindedness in pursuing ways to alleviate the suffering of those with CFS and Fibromyalgia.He sacrificed a home life and family who stuck by him and continue to stick by him in his hour of need.I read the kind comments and am grateful. I read the snide and snarky comments of another person (not you, Ken) who sounds like a rejected lover who took all he could and turned on the person who rejected him.I feel sorry for that person.Whatever he says reflects far more on his character than it does Jay.
Reply Reply

not bitter...it is the scientific aspects and perspectives which foment difficulties
Posted by: journaltruther
Dec 24, 2013
The commentaries here by Dr. Goldstein's wife ring true. So many patients and friends know Jay as a compassionate and loving man. And let us remember: at the time he was practicing and writing, there was virtually no funded research about either CFIDS or fibromyalgia. If you go back to that period, almost everything was based on theory and conjecture--which is logical in the earliest stage of in the study of any problematic
disease or disorder.

Dr. Goldstein did nothing wrong.

However, it must be considered that the totality of theory and conjecture in his writings were carried too far. In other words, he didn't have a cure or effective treatment, and it is wrong to keep insisting that he did. So many patients with these dreadful, life-damning disorders are so desperate for help that the placebo effective simply overwhelms them. They want so dearly to get better...so any--just any--"new" therapy invites hope.

Others may object vehemently to this, but the entire thrust of "treatment evangelicalism"--to take one's own perceived improvement, occasioned by some random syrup or diet or "natural ingredient--and to tout it as a "cure" for everyone else--is simply wrong. it does no one any good. Sharing helpful tips for coping, and sharing love and concern where and when it can be given is entirely different matter, and a blessing for those in this very special family. But please--caution is needed when taking anyone's single-case story, and shouting it from the rooftops. To those who have gotten better through some method of their own--again, God bless you. But please, don't become prophets, priests, and priestesses for everyone else. You won't help help.
Reply Reply

BCohen Still Won't Own Up But Re-Invents Himself!
Posted by: grateful patient
Dec 25, 2013
It seems Bcohen has re-invented himself and now calls himself Journaltruther because he wants to avoid answering what his motives are for attacking Dr Goldstein and his patients after publishing his all of his books.
BCohen there is still the same level of ignorance in your recent postings under Journaltruther. The real problem is that you have some problem and can't help yourself. The treatments were never placebos and other doctors use part of his protocol. No-one else refers to them as cures except you. There isn't a cure for any auto immune disease at the present time so why you keep misconstruing this point is stupid and shows your lack of understanding. Clearly Neuroscience and Pharmacology aren't your strong points. You don't have CFIDS/ME and have never tried his protocol so it hardly makes you a worthwhile candidate to make comments. I read on a Co-Cure posting that Dr Goldstein will be writing a series of articles on therapeutic trials and effective medications in The National Forum with the first one to be in the new issue for Winter 2013-2014. Their website is www.NCF-NET.org.
Reply Reply

BCohen Still Won't Own Up But Re-Invents Himself!
Posted by: grateful patient
Dec 25, 2013
It seems Bcohen has re-invented himself and now calls himself Journaltruther because he wants to avoid answering what his motives are for attacking Dr Goldstein and his patients after publishing his all of his books.
BCohen there is still the same level of ignorance in your recent postings under Journaltruther. The real problem is that you have some problem and can't help yourself. The treatments were never placebos and other doctors use part of his protocol. No-one else refers to them as cures except you. There isn't a cure for any auto immune disease at the present time so why you keep misconstruing this point is stupid and shows your lack of understanding. Clearly Neuroscience and Pharmacology aren't your strong points. You don't have CFIDS/ME and have never tried his protocol so it hardly makes you a worthwhile candidate to make comments. I read on a Co-Cure posting that Dr Goldstein will be writing a series of articles on therapeutic trials and effective medications in The National Forum with the first one to be in the new issue for Winter 2013-2014. Their website is www.NCF-NET.org.
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BCohen Disguises
Posted by: grateful patient
Mar 26, 2014
Readers should be aware that Bill Cohen has used three names to enforce his views and they are his own name, bcohen, beagle99 (the one who started off the comments) and journaltruther. This is designed to fool readers into thinking others back up his views. His publishing company Harrington Park Press thankfully doesn't publish medical books now and any author thinking of using his company for publishing their books should seriously think about going elsewhere judging by the way he has treated Dr Goldstein and his patient. Notice his still will not explain his motives!
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His Methods Are Explained in the books
Posted by: grateful patient
Apr 3, 2014
Beagle 99 It is perfectly ridiculous for you to ask what his methods are and treatments when you published them in Dr Goldstein's books under your real name of Bill Cohen. You are pretending not to know they were explained in detail along with case histories when you owned Haworth Medical Press and published all of his books. I have never heard of anything more absurd.
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