End Fatigue
Answers to Your Questions
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My XMRV test came back positive. What do I do?
Dear Dr. T,
I have my XMRV test results back and will attach them to this e-mail. I would love to hear your thoughts and possible treatment options.
Thanks,
Mike
ANSWER
Dear Mike,
Thanks for sending the results. I will need to see a spread of results from a number of people to get a sense of interpreting them better (e.g.- is there a spread of positive and negative results?)
At this point there is no recognized treatment for XMRV, but many treatments that are effective for retroviruses in general. These hopefully will be tested (by individuals who will give feedback on the internet in the coming year and in treatment studies in the next few years). Most physicians will at least wait for the first wave of clinical experience to be reported on before prescribing anti-retroviral therapy.
In the interim, I would consider general antiviral therapies such as:
1. | Gamma globulin 2 cc IM (intramuscular injections) weekly for 6 weeks (called Gammar). |
2. | Antiviral IVs with high dose vitamin C and thymus and licorice extracts. |
3. | Immune stimulating herbals and supplements. These have been very helpful at the Fibromyalgia and Fatigue Centers, and have historically been very helpful in CFS patients. For more on viral infection treatment in CFS, see "Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure." In addition, overall treatment with the “SHINE Protocol” can markedly help. Our free symptom analysis program can determine what treatments will help YOU feel the best (it varies a lot from person to person)! |
We will be keeping a close eye on people's experience (patient's, clinicians and researchers) with different antiviral regimens for XMRV over the coming year, and will be encouraging people to send us their experience (and have added a specific area for this on our Community Board for this). We will report on this in our newsletter as we get the info.
Meanwhile, please keep us informed of your experience with treatment!
Love and Blessings,
Jacob Teitelbaum, MD
I’d like to share the following email exchange I had with a Dr. Oz Show viewer who was upset at the way they covered the topic of "fatigue."
Dear Dr. T,
After dealing with CFIDS/Fibro for over 20 years, I was very excited to see you would be on Dr. Oz' new show. Unfortunately, I was shocked that so little information was given about the illness. Since the topic was Exhaustion Epidemic, it seemed to me that this show only furthered the misconception that the main symptom fatigue. The vast array of symptoms or a way to help diagnosis were not even discussed. I plan to email Dr. Oz as well because it seems he did a grave injustice to not only this illness, but the whole topic on exhaustion. Again, a topic for Dr. Oz, but when he mentioned Thyroid Armour (Armour Thyroid?) instead of Synthroid, is he even aware of the severe shortage and production issues? I also suffer from iron deficiency anemia, hypothyroidism and reactive hypoglycemia. Usually I would say that "any publicity is good publicity," but this seemed to me just an opportunity to get your name out there. I do believe you really want to help people, but hope you will be more careful about finding out the content of the show before accepting a guest spot. And I really hope you have a good enough relationship with Dr. Oz to discuss these issues, as I doubt I was the only person left feeling like a big "so what."
Sincerely,
Lesley L
MY RESPONSE
Many viewers were concerned that The Dr. Oz Show segment with me last Friday glanced over CFS and focused on fatigue and exhaustion, sometimes seeming to lump them together. I share this concern, and was very disappointed when I saw the segment. It edited out most of what I had said about CFS, including it NOT being regular fatigue but a separate, real and distinct problem. It also edited out my discussion on its causes and how to treat it.
Sadly, the best part of many shows ends up on the editing floor!
It is not Dr. Oz’ fault, but represents a difference in communications.
When his producers called me the week before the show’s taping (about six weeks ago and well before the XMRV research release), their focus for the 12 minute segment was simply overall fatigue. In our discussions, I moved their thinking to a larger focus on CFS, feeling that this desperately was overdue to be covered by Dr. Oz (and from there, Oprah). Happily, the show development moved in that direction, with them even picking two CFS patients for me to evaluate and offer treatment options to just before the show.
The focus shifted again the day before filming, as producers realized they had too much material for a 12 minute segment. So the patients were left out at the last minute. When the final taping occurred, it gave the impression that the show would play as taped, in which I was better able to discuss CFS causes, diagnosis, and treatment, as well as distinguishing it from regular fatigue. I was also disappointed when this was largely cut during editing.
What occurred was a good entertaining segment for those with day to day fatigue (as it was initially meant to be), but a horrible one for those with CFS who know they have it, as the CFS came off as being trivialized. I apologize for this, though it was not in my control. On the bright side, for those with CFS but without a diagnosis, identifying the combination of exhaustion and insomnia as a warning marker that you may have CFS has been leading many of you to the correct diagnosis from the show. Hopefully, it has also opened the door to having a segment on CFS or FMS alone.
So though it did not have the CFS focus we were hoping for (and that I was trying to move it toward), it does reflect getting a foot in the door, and I will be encouraging a show with a full segment on CFS and FMS so it can be covered properly. Having worked with and encouraged the Oprah producers to cover these syndromes for many years, I would note these simple observations:
Letters that are angry, and even abusive, likely leave them feeling the topic is still too controversial to cover. So venting may feel good sometimes, but if done without being reasonably considerate, it may simply once again push CFS/FMS OFF their “radar screen.”
Letters thanking them for covering the topic, but noting how and why the coverage should be improved, and why it is important to cover, will more likely get what we want. It is OK to thank them for covering CFS and still note that:
1. | Dr. T had almost no time to discuss CFS. |
2. | The segment blurred CFS with regular fatigue or depression — clearly not the case and a major disservice to those with the illness — requiring clarification. |
3. | New research on a blood test for CFS came out since the show was taped. |
4. | It would take a full segment, giving the expert enough time to speak, to properly even begin to cover the illnesses of CFS and fibromyalgia. |
5. | Please consider a full segment on the topic, done sooner rather than later. |
Please consider sending a gracious message noting the above to Dr. Oz at The Dr. Oz Show contact page.
Sorry if there were misunderstandings, but know that I am on your side — and Dr. Oz is as well.
Thank you.
Love and Blessings,
Jacob Teitelbaum, MD
Reader notes “Thank you. Got my life back with Ribose.”
Hi,
My name is Brooke. I have never done anything like this, where I have experienced such an impact on the quality of my life that I would be willing to sit down and write someone to tell them about it. My family is convinced I should write a book. I don't think so, but from what I’ve been told, my story is fairly remarkable.
I have been tired for longer than I care to think about. I am a 30 year old female and have been abnormally tired since I was 18 yrs old. It goes further back than that, but the real fatigue started around that age.
I have always been determined and strong willed. An athlete my entire life, I went on to play Division I college soccer at a University in Northern California. I received conference honors for my performance on the field my junior and senior years. I also did well scholastically. I had an overall 3.0. Not off the charts good but not too bad.
I remember over my four years in college going to countless doctors to check my blood for iron deficiency, thyroid problems, possible mono, and the list goes on. All results came back that I was "healthy" and that there was nothing visibly wrong with me.
I also remember walking to practice at 3 pm everyday agonizing over how I was going to make it through. I always did, but it was painful both physically and emotionally. I grinned and bared it and felt more like a robot than a human being most of the time, which roughly sums up in one statement what my life has felt like for the past 12 years.
My freshman year, as I a result of never feeling good, I became depressed. Not brutally depressed but definitely not myself. The fatigue and overall feeling of discomfort quickly escalated into an eating disorder. I eventually had to come clean to my coach as I had lost a ton of weight. My treatment plan if you will included some counseling and a prescription for Prozac. Neither lasted very long.
I went in and out of eating disordered behavior until I was 27 years old. I was too prideful to ask for any help. I had also given up and disregarded my being tired as playing a role because after all, the doctors had always given me a clean bill of health. Maybe I just needed to be stronger.
After graduating from college I went on and got a good job but I still felt debilitating fatigue. Bouts of heavy drinking and partying in college evolved into full blown drug and alcohol addiction during this period of time. I've always been a risk taker and have had the "rules don't apply to me attitude." I found that the perfect combination of meth and alcohol and I'd feel energized and happy. Rarely did I feel either of those things and certainly not both at once! By 27 I was homeless and on the streets. I knew I was better than a life of drugs, but clean I felt lifeless.
You'd have to understand how miserable the fatigue makes your life to comprehend why someone would go to such extreme and unhealthy lengths to feel some relief. My life looked good on paper but I could never fully engage. I wanted so badly to be a part of a life I knew was wonderful, but just couldn't. Drugs and alcohol seemed to be the answer, but only for a short time. No one can sustain that kind of abuse with any level of success over a period of time. Yet, with no answers or help from medical professionals, I was willing to do just about anything. Drugs and alcohol are often used as means to escape or “check out.” That was NEVER the case for me. I was only trying to “check in.”
Certainly there are countless people in the world that suffer from this kind of fatigue who don’t develop eating disorders or abuse drugs and alcohol the way I did. I am however, 100% positive, that it would have never gotten so bad had I not felt like the walking dead as often as I did.
I remember around this time driving with my dad in his car down a nice strip of highway in Southern California right near the beach and him saying to me “It’s a beautiful day out Brooke, don’t you want to get out there, grab a coffee and walk with friends and enjoy yourself?” I’m sure my answer was something along the lines of, “yeah dad that would be great” but I remember to this day thinking in my head, “but dad you don’t understand…I CAN’T.”
At 27 I got help for drugs/alcohol and went on a crusade for answers. I started with an excellent psychiatrist who initially put me on anti-depressants. They didn't work at all. I was still so tired all of the time. After explaining my past with him, he thought that maybe depression was only a secondary problem, and that the fatigue was primary. But every doctor told me I was "fine." Irregardless, I yet again went in and had my hormones, thyroid, etc. checked. All came back normal. So my doctor put me on Provigil and I went off anti-depressants. Provigil is a non-addictive central nervous stimulant.
The Provigil worked at first, but my body quickly adjusted and I couldn't tell the difference between being on it or off it. I was so sad. It appeared to have helped, but only for a minute. I had read some great reviews from people who take it, but for me, it wasn’t the answer I was looking for. I wasn't depressed at all I noticed. I never really had been. I had always simply been tired of being tired.
I then went on to a gynecologist who told me that the frequent urination and pain I had been experiencing for some time was due to interstitial cystitis. He put me on Elmiron. The Elmiron made me feel horrible so I stopped taking it and continued taking Provigil. I know, I shouldn't play doctor, but I am still strong willed as ever!
I later went to see another gynecologist because I was starting to excessively sweat during the night. My hormones had been tested by the previous doctor and everything came out "fine." She said it would be next to impossible for me to be pre-menopausal at 30 years old, and sent me out the door.
Over the past year (2009) I had been having recurrent sore throats, and white spots. My lymph node on the left side was constantly swollen (this was also I problem I had in college that I disregarded for the most part). It became so bad that in August of this year I underwent a tonsillectomy.
A month ago while researching causes for fatigue as you will often find me doing at night after my adorable 1 yr old daughter has gone to bed, I came across the name Dr. Teitelbaum. When I got to the home page I saw Dr. Oz, a name I have come to trust and to hold in high regard. I knew I had landed on something good.
I took the test Dr. Teitelbaum offers that in essence lets you diagnose yourself based on a questionnaire. I couldn't believe it when I went to work to print it out and around 50 pages came out. I wanted to cry. I felt like someone cared!
When I came across D-Ribose and the effects it has been having on CFS patients, I did further research of my own on the internet and I had to have it immediately. I went out and bought a good multi and the ribose the next day. I have tried everything for energy: caffeine, ginseng, ephedra, Provigil, methamphetamine, working out, sales jobs that get my adrenaline roaring, 9 hours of sleep (that never by the way leave me feeling refreshed in the morning), you name it... the good the bad the ugly, and I've tried it.
I have never in my life experienced such a dramatic effect on my energy levels, with no side effects, as the past month I have been taking the D-Ribose. I am nervous after so many years at failed attempts for energy that this is too good to be true and that somehow this will stop working. But for now, I want to give Dr. Teitelbaum a HUGE thank you from me, my daughter, and everyone in my life who loves me so much and wants so badly to see me enjoy this wonderful life I have to the fullest extent possible.
Just to know there is someone out there that understands that people like me are not imagining fatigue, and have taken the time to research and pass the info along to us, I am forever grateful.
This email by the way is a very watered down version of the past 12 years. It's far more intense than I just described. So as you can imagine, it's wonderful to feel so full of hope.
Sincerely,
Brooke
Thrilled — Feeling 85% better with treatment by Dr. Ali Garcia at the Las Vegas Fibromyalgia and Fatigue Center.
Thanks for the ongoing newsletters. The article on the swine flu vaccine answered many questions on my mind.
Ten years ago I had to self-diagnose myself as a CFIDS sufferer. It went in to remission, and came back with a vengeance over 3 years ago. At that time, Dr. T was my only source of information and confirmation. His book is my personal recovery bible. I continue using it as a reference for reassurance and information.
I live near Tahoe, where Dr. Peterson practices, but was unable to get in to his clinic. Then I found the Fibromylagia and Fatigue Center in Las Vegas. With treatment from the wonderful Dr. Alena Garcia at the clinic, and of course supplements and support from Dr. T, my health has improved dramatically. I went from barely having the energy to shower in the mornings to what I consider 85% wellness. That is something to celebrate!
The recent discovery at Peterson-Whittmore Research Center at University of Reno, NV linking the retro virus to CFIDS gives credibility to our claims of real illness. Hurray!! I thank God every day for the brave doctors that are willing to fight the system and save lives like mine!
Sincerely,
Jane J
ANSWER
Dear Jane,
You're welcome!
Glad you are feeling better. That's what makes it so much fun working with people with CFS/FMS ;-)
Love and Blessings,
Dr. T
Using Clomiphene to treat low testosterone in men under 50 years old.
Hello,
From your article "Can Testosterone Be Good For You:"
Treating Low Testosterone: ”For men under 50, it is often best to simply stimulate your body's own production of testosterone using a low dose of a medication called clomiphene (a "Clomiphene Stimulation Test" will tell you if this will work for you).”
What is considered a "low dose" (25 mg, 50 mg, etc.) and does it vary by body weight?
Regards,
Jeff
ANSWER
Dear Jeff,
The usual dose is 10-25 mg of sustained release clomiphene in a capsule (made by a compounding pharmacy, e.g. ITC Pharmacy 888-349-5453) 3x week at bedtime based on what is optimal to keep the testosterone level adequate at over 500 and preferably over 700 (lower doses paradoxically often work better than higher dosing). Dose is not based on body weight. It is usually proceeded by a Clomiphene Stimulation Test to see if it works, and the dose is adjusted based on the dose needed to keep testosterone levels OK (preferably over 600). For the stimulation test, blood testing for free and total testosterone and estrogen is done as a baseline, and then repeated on day 7 after taking clomiphene 50 mg at bedtime for 7 days to see if the testosterone has increased to over 500.
I would work with a holistic physician familiar with bioidentical hormone replacement and better yet, if there is a location near you, a Fibromyalgia and Fatigue Center (FFC) physician could optimally guide you (if you don't also have problematic fatigue, simply make an appt for bioidentical hormone treatment). The FFC physicians have the protocols for clomiphene testing and treatment in their database, and I can also guide them if questions arise.
L&B,
Dr. T
Comment posted on the Oprah website.
Dear Dr. T,
I thought you might like to see the comment I posted in response to Dr. Mehmet Oz's column in the September Oprah magazine. I'm so glad you mentioned it in your newsletter.
Thank you again not just for the specific help you've given me but also for the work you're doing with CFS in general.
Sincerely,
Bola O
ANSWER
Dear Bola,
Thank you for your very wonderful post. These kind of posts very much help to move things forward.
As an update, Dr. Oz also flew me to New York for a 15 minute segment they taped recently for his TV show. It was on fatigue, and focused especially on CFS — a major leap forward for the Oprah community ;-) This was the first segment of the show — kind of like the headline of a newspaper! It will likely air in the next 3 weeks. (If I get a few days heads up from the producers, I'll aim to put the date of the show in a newsletter.)
Thanks again for your support. Things are moving forward for folks with CFS!
Dr. T
Diagnosing bowel problems — SIBO and lactose/fructose intolerance testing.
Hi,
I read your article about spastic colon/SIBO testing in CFS patients, and I was hoping you could clarify the difference between testing for SIBO, fructose and lactose intolerance.
My 15 year old daughter has had chronic bloating/stomach pain most of her life. Although she is an athlete who rows, swims, and runs and has thin arms and legs, her waist/stomach measures over 36 inches! Since she was 12, she also has chronic neck/shoulder muscle pain. She had colic as an infant, and at 9 months old she had a bad case of rotovirus where she was almost hospitalized for dehydration. Even now, if the whole family gets the stomach flu, she always seems to get it the worst. A IGg4 blood test indicated she has intolerances to eggs, wheat, dairy and peanuts, but after 3 months on a strict elimination diet she is only marginally better. She does eat alot of fruit/fruit juices, so your mention of testing for fructose caught my eye.
I took her to a gasteroenterologist, who did a HBT on her for lactose only, which turned out fine, so she says it is a simple motility problem. But I know if must be more than that! Your article mentions different tests for SIBO and fructose, so just because her lactose HBT came out OK, is it possible fructose or SIBO could be a problem? How is that different from breath testing for lactose? Is it a different substance that she would ingest for fructose and/or SIBO than for lactose before doing a HBT? Will an antibiotic clear all this up? Would a stool test also be a good test to do?
Also, her gastro MD mentioned motility might be a problem for her, which you also mentioned in your article. How does your "energy revitalization system" help increase motility — does magnesium help? Her doctor suggested MiraLax, but I really don't want to put my child on drugs if I can help it.
Please respond at your earliest convenience. I am desperate because my teenage daughter has very low self esteem, between a large waist (boxy figure), chronic muscle pain, and bad acne. Please help — I don't know where else to turn.
Sincerely,
Michelle
ANSWER
Dear Michelle,
The test for lactose intolerance ONLY checks for lactose intolerance and would NOT tell if SIBO or fructose intolerance were present, or if overgrowth of unhealthy (vs. healthy) bowel bacteria are present.
The individual HBT breath tests for SIBO, as well as for fructose intolerance, would need to be done on separate days. See the instructions attached which I have written with more information on treatment for SIBO (including the magnesium in the vitamin powder).
Another option is to avoid all fructose (e.g., sodas, fruit, etc.) for a week to see if symptoms improve. For SIBO, optimizing thyroid function with prescription Thyroid is key to improving bowel motility — which is an important part of treating SIBO. In addition, a 10 day trial of the antibiotic Rifaximin (as discussed in the SIBO article) to see if symptoms improve would be another way to screen for SIBO and other bowel infections. Basically, if symptoms improve and stay improved for even a few weeks after the antibiotic, then more aggressive treatments to improve bowel motility and bacterial balance can offer long term benefits.
Miralax is fairly safe for constipation, but will not address the underlying problems.
I suspect all of the above issues are but a small part of the problem. I recommend she see a Fibromyalgia and Fatigue Center physician (raise your concerns with the doctor and they can call me to discuss the questions you raise as well) or even do the free online "Symptom Analysis" program to assess for likely causes of her symptoms and create a treatment program for her as this can help her overall condition.
Hope this is helpful.
Let me know how she does. What she has sounds very treatable, but she needs a more thorough overall evaluation by someone more familiar with these overall issues.
Love and Blessings,
Dr. T
What do you think of the Chinese herbal remedy my doctor recommended for my chest pain?
Dr. T,
Hello again. Lately my energy has been down and I get an ache on the left side of my chest wall. I had a consult with a Chinese doctor and he said I have a spleen deficiency and a kidney deficiency and prescribed herbs. Could the ache on the left side of my chest be my spleen? And have you had any other people report success with Chinese medicine. Thanks for any insight you may have.
Mike
ANSWER
Dear Mike,
Chinese medicine (TCM) including herbs and acupuncture seem to work best in CFS/FMS after the SHINE protocol discussed in my book From Fatigued to Fantastic! and website has been addressed — but it can help.
Be aware that when he says spleen, he likely does not mean the physical spleen (as western physicians would) but rather the line of energy running from head to toe through the spleen (called a meridian).
Once your physician has ruled out heart disease, the left side wall ache in fibro patients is chest wall muscle pain the vast majority of the time (which is simply a nuisance and not dangerous). If it hurts when you push on it (during the pain) and is over the rib area, this usually confirms that it is muscle pain (discussed further under chest pain in my book Pain Free 1-2-3).
Love and Blessings,
Dr. T
Other natural antivirals resulted in “incredible” improvement in this person’s severe fatigue/CFS.
Dr. Teitelbaum,
I am coming up on 18 months since I began treatment following your protocol suggestions.
Since my last correspondence in November 2008, I had serious fatigue and brain fog, with concurrent high anxiety and low stress tolerance. Recent lab tests in March 2009 from the Fibromyalgia & Fatigue Center showed low cortisol and suggested a variety of infections. The same was true in lab tests back in March 2008.
The doctor suggested:
- increasing the cortisol from 5 mg to 20 mg
- taking antibiotics
In March 2009, I graduated up to 20 mg of cortisol and began to feel better.
I decided to hold off all treatment (in particular cortisol) during April and May 2009, while waiting to get an adrenal stress test. My father and I had recently consulted with CFS contacts at CDC and learned that they produced a study in summer 2007 linking adrenal fatigue with CFS.
During this period, I learned about oregano oil and monolaurin as antibacterial, anti fungal and antiviral. I was surprised to see these on your SHINE protocol treatment list (a excerpt of it follows).
80. | Monolaurin — 300 mg capsules. Take 9 capsules once a day on an empty stomach for 1 week, followed by 6 capsules once a day for 20 days. Take lysine 1,500 mg twice a day while on Monolaurin. |
81. | Olive leaf — 500 mg, 2 capsules 3 times a day for 10 to 14 days for respiratory infections. |
95. | Oregano oil (enteric coated) — 2 capsules on an empty stomach 3 times a day for 3 to 4 months, then 2 a day as needed for yeast overgrowth. |
After reviewing the literature and discussion with other M.D's, in May 2009 I began taking oregano and other essential oils. Last week I added monolaurine and lysine.
The results are pretty incredible.
- Oregano oil / Essential oils / terpenes
- Monolaurin
- Lysine
- Adrenal fatigue
Thanks,
Willard
ANSWER
Dear Willard,
Given the clinical response, it seems that the infections and adrenal fatigue are major components of your illness. The lysine and monolaurin are antiviral and the oregano oil tends to suppress candida. These are but a few of many helpful natural anti-infectious compounds, but relative to many of the other treatments available help a relatively small percent of people, so we often start with other treatments first.
Monolaurin comes from lauric acid, a fatty acid found naturally in breast milk and certain vegetable oils. This fatty acid has been used as a germicidal agent for centuries, and basically melts the viruses protective coating. It is cheap and can be found in many health food stores and at the NEEDS website (a wonderful company carrying CFS & FMS products owned by 2 of my favorite people).
Lysine is an amino acid (protein) which decreases the level of another amino acid called arginine. Arginine is food for many herpes viruses, so the lysine starves them. This is why lysine is used for preventing herpes and cold sores, but may also starve other viruses. The problem is that arginine is critical for making growth hormone (low in CFS/FMS) and nitric oxide (imbalanced in CFS/FMS — see the work of Professor Martin Pall). So lysine can be a “double edged sword,” and I use other antivirals instead.
Oregano oil sometimes also has a side effect of people getting reflux with the oil taste through the day. On the other hand, in some people in combination the effects can be dramatic as you have seen. I would recommend continuing these for the 20 days for the monolaurin, six months for the lysine and three months for the oregano oil.
In addition to the benefit you've received from these, it also offers useful diagnostic information. Both the lysine and monolaurin have antiviral properties, raising the possibility of there being a significant viral infection. The oregano oil effects suggest that candida is an issue. Your FFC physician can address both of these with additional treatments that can help.
If symptoms recur when the monolaurin is stopped, I have not heard of any toxicity from longer-term use, and it is considered safe long term — though usually used for 20 days.
The Adrenal Stress End product at my website can also help the adrenal glands to heal.
L&B
Dr. T
Treating persistent spastic colon with Alinia.
Dr. T,
I've had chronic diarrhea/IBS symptoms for about 5 months continuously. I completed six weeks of Diflucan and am presently completing six weeks of Nizoral. I also take grapefruit seed extract and Probiotic Pearls.
My doctor recommends adding bifidobacterium, caprylic acid, and Uva Ursi to my regimen and continuing the Nizoral, grapefruit seed extract, and probiotics.
Attached are my CDSA results. Do you see anything else that stands out? Do you have any other recommendations?
Thanks so much.
John
ANSWER
Dear John,
As it has lasted 5 months, worth adding probiotics, but also consider a trial of Alinia which will treat many bowel infections (directions below). Also see the article on SIBO on my website and avoid sweets and lactose/dairy for 10 days first to be sure it is not lactose/fructose intolerance. Also, stay off magnesium containing supplements (including the vitamin powder) for 3-5 days to make sure this is not the cause. If contributing, lower the dose of the powder to 1/2 scoop a day, and add time release magnesium (on our website from Jigsaw Health) 2-4 at bedtime (it does not cause magnesium induced diarrhea).
Alinia instructions:
Alinia (Rx, nitazoxanide) — 1gm 2 times a day for 10-14 days. This is longer than the standard recommendation for this medication and it is expensive, but it will be off patent soon. So there hopefully will be less expensive generics available soon.
L&B
Dr. T
Treating low amino acids in CFS.
Dear Dr. T,
After reading the study Amino Acids Low in Fibromyalgia, I am curious about what part of the digestive system is broken down. Could it be candida or damage to the small intestine? I'm going to take digestive enzymes with every protein meal and see if it helps.
Brian
ANSWER
Dear Brian,
We know that many amino acids are low in CFS/FMS, which is why we have 7,000 mg of amino acids in the Energy Revitalization System vitamin powder we use. The study authors' conclusions about amino acids being low are likely valid, but I suspect their guess about this coming from poor absorption is missing much of what occurs (poor absorption would cause all of the aminos to be low).
The gut is not "broken down" from the infections. Though there is poor absorbtion association with "leaky gut" from numerous bowel infections (which actually causes the aminos to be absorbed in long chains which then get eliminated by the immune system) and loss of nutrients because the gut infections may "eat" the aminos before your body can absorb them, there is also increased utilization for different functions and problems that occur in CFS/FMS (e.g., glutamine, glycine and cysteine are very low in post viral fatigue/CFS as these are used to make glutathione, which gets used up more quickly in chronic infections).
I find that people do better with amino acid supplementation, and this is why we have it in the powder. Beyond that, treating the infections and hormonal problems, as we do in the "SHINE Protocol" overall, is the approach I recommend to treat the low aminos. For example, Tyrosine makes thyroid and dopamine in addition to the catecholamines/adrenaline that they discuss.
L&B
Dr. T
Treating "Dysmorphic Disorder (BDD)," which causes severe over-focusing on what is perceived to be a physical defect. Could this be associated with OCD?
Dear Sir,
I live in Scotland and I attended one of Dr. Teitelbaum's presentations. It was fantastic!
I am asking for your help. Could you possibly send this email to Dr. Teitelbaum as I think he may be able to offer life saving help for my 26 year old brother. He has body dysmorphic disorder which is slowly robbing us of the young man we will not be able to live without. He is socially isolated now and he had such charisma and popularity before this mental illness struck him. I am his sister and I am looking into the mental health/thyroid link. He has low DHEA levels and he appears to have adrenal insufficiency, although physically he weight lifts (that is all he has in his life). However I understand that the chronic severe stress he faces daily could be compromising his adrenal glands. He is currently taking Armour thyroid, but I am worried that this may not be reaching his cells. It is possible he needs cortef too? Also been suggested that he needs vitamin B12. I really need some guidance. I do not exaggerate when I say this could literally save his life. We really need help soon. Please find it in your heart to forward this to Dr. Teitelbaum. He is truly a remarkable man.
Thank you for your time.
Best wishes,
June
ANSWER
Dear June,
BDD, with over focusing on what is perceived to be a physical defect, tends to be a cross between obsessive compulsive disorder (OCD) and depression. It is associated with low serotonin as is depression, so both OCD and depression treatments should be added.
Prozac family medications help in a portion of people with BDD and are reasonable to try. Adding thyroid that contains T3 (such as Cytomel or the Armour he is on) can be helpful in depression (and therefore possibly BDD) even with normal labs. Adrenal issues are less likely to be an issue (cortisol tends to be high in depression, not low) so a fasting morning cortisol should be checked and adrenal only treated if it is in the lower 1/2 or so of the normal range. On the other hand, fluctuating blood sugars can flare the BDD, so a low sugar diet is helpful.
If his DHEA-S is under 300 MCG/DL I would add DHEA and if his B12 is under 540, I would give B12 shots.
Looking at other depression treatments, fish oil (or your excellent Scottish salmon at least 4 ounces 3-4+ times a week) should be added. See Eliminate Depression — Naturally! for more. In addition, helpful treatments for OCD include:
 | 1. | NAC (N Acetyl Cysteine) 600-2,000+ mg a day. |
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| 2. | The Energy Revitalization System vitamin powder has many helpful nutrients. |
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| 3. | Add 5-HTP 200 mg a night if on anti-depressants and 300-400 mg a night if not on antidepressants to raise serotonin (if pulse goes very high with anxiety or with fevers, the 5 HTP should be stopped till seen by a holistic MD or naturopath as it can raise serotonin too high, though this is rare). |
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| 4. | Consider GABA (gamma amino butyric acid) 1,000 mg at bedtime. |
Give the above 6 weeks to start working.
In addition, he should see a holistic practitioner (preferably one who does NAET — visit www.NAET.com to see if there is one near you) to look for and treat food allergies. Doing an elimination diet first for 7-10 days to see if he improves is reasonable (improvement off the foods suggests food allergies — if not, allergies are less likely — add the nutrients above for 6 weeks first, then do a Multiple Food Elimination Diet. If the elimination diet does not help, food allergies are less likely. Also, Dr, Tom Gilhooly in Glasgow does excellent holistic care with a focus on essential fatty acids, so I recommend a consult with him.
Hope this is helpful. Your brother is lucky to have a loving and caring sister like you;-)
L&B
Dr. T
What could be causing my heart palpitations?
Hi Dr. T,
I have a few questions — I started taking the Adrenal Stress End again because I got another infection. Now I have heart palpitations at night and am shaking several times a day. I also started back on the DHEA and some tomidan. What could be causing the heart palpitations? How do you know how much adrenal stress to take? I'm still sick but better some.
K
ANSWER
Dear K,
It would be unusual for any of these to cause palpitations, though adrenal products can rarely cause palpitations as shakiness as they increase energy. The infections can often do it as well. In those under 45 years of age where the palpitations just feel like a "flip flop" it is rare for them to be dangerous, and these are very common in CFS/FMS, but best to have your doctor check to make sure there is not some other dangerous cause.
If the palpitations and shakiness persist after being off the supplements for more than a day, it is unlikely that the supplements are causing it, and they are more likely from the stress of the infection. If they stop when you stop the supplements, I would add each supplement back one at a time for 3 days to see if they recur. If they recur, stop that supplement. For the Adrenal Stress End, most find 1-2 caps in the AM is plenty, but some add 1 one at lunch.
As I noted, palpitations are common in CFS and can worsen with stress. If not associated with chest pain or dizziness during the palpitations, I have never seen them be dangerous in my CFS patients unless there was other underlying valve disease or angina, which is rare. The shakiness suggests low blood sugar, which is usually caused by low adrenal function, but taking adrenal support can rarely cause shakiness as well as it increases energy. I find that increasing magnesium intake (to a total of about 300-500 mg a day, or less if it causes uncomfortable diarrhea) tends to settle the shakiness and palpitations over time. The Energy Revitalization System powder has 200 mg of magnesium. I would add our new "Jigsaw brand" low release magnesium 2-3 tablets at bedtime as it does not cause diarrhea as some other magnesium products will. Each tablet contains 125 mg of magnesium and approximately 600 mg of malate
L&B
Dr. T
Feeling much better on Corvalen (ribose). Also, is the increased urination in CFS considered diabetes insipidus? Is whey helpful?
Dear Dr. T,
Your website is such a blessing for anyone with CFS. It is my best source of information.
My daughter is experiencing improvement on the Energy Revitalization System and the Corvalen. Would she also benefit from taking undenatured whey protein such as Immunocal, or is that too much? She started taking Immunocal and on the second or third day she got a headache and has been feeling headachy for the past two or three days.
We started with Cheryl [note: Cheryl Alberto is Dr. T's office educator who also has a private practice as a CFS/FMS educator. Cheryl can be contacted at cheryl@endfatigue.com] and she will be getting back to us with a plan for more blood tests. I am pretty excited about the thought that hormones could be tweaked for possible improvement. I suspect that may be her best possibility for improvement. K may also have diabetes insipidus and she might be getting treatment for that. Dr. Paul Cheney has said in the past that about half of this patients show up with a mild diabetes insipidus. I did look for information on diabetes insipidus in Dr. Teitelbaum's work but he has almost nothing on the subject. I guess his perspective is different from Dr. Cheney on that. I can't get over how good Dr. T's question and answer newsletter is today.
Thanks.
C
ANSWER
Dear C,
Thanks. Good questions. And I am glad K is feeling better ;-)
I would leave off the Immunocal if it gave her a headache.
Dr Cheney and I may simply be using different words to describe the same process. I discuss a deficiency of anti-diuretic hormone which leaves people "drinking like a fish and peeing like a racehorse" and dehydrated. This is simply one of many hormonal deficiencies associated with hypothalamic pituitary dysfunction, and the treatment is adrenal support along with increasing salt and water intake, as well as treating autonomic dysfunction (all discussed in my book From Fatigued to Fantastic!) to optimize blood pressure. Diabetes Insipidus (DI) is simply a deficiency of this anti-diuretic hormone (i.e., anti-urination hormone). I reserve the term DI for much more severe deficiencies than those seen in CFS and also those which occur in isolation and not for what we usually see in CFS. In CFS the deficiency is much milder and CFS symptoms do not usually improve with taking anti-diuretic hormone (DDAVP) — which is curative in DI. So, same concepts, different languages ;-)
L&B
Dr. T
What brand of Probiotics do you recommend?
Dear Dr. T,
I am on a budget and need to know if the probiotic acidophilus that has been recommended by my doctor has to be Ultraflora brand by Enzymatic Therapy or can I purchase another less expensive brand? Would this brand be an acceptable: Enzymatic Therapy, Acidophilus Pearls, Digestive Health, 90 Pearls?
Thank you! I appreciate your guidance and support.
Vickie
ANSWER
Dear Vickie,
The Enzymatic Therapy, Acidophilus Pearls, Digestive Health, 90 Pearls is excellent (and is actually the one I recommend and carry on my website). Any of the "pearls" would be OK, and the Enzymatic Therapy form is the best one. Without the pearl coating, over 99% of the probiotics are killed (and rendered useless) as they go through the stomach's acid.
L&B
Dr. T
Ribose is helping a lot, but does it cause weight gain or weight loss?
Dear Dr. T,
Hello, and thank you for such an informative website!
I have 2 quick questions about D-Ribose — which I am finding incredibly helpful so far — that I'm hoping you can answer.
| 1. | Does the average intake of 3 five-gram teaspoonfuls a day cause weight gain? |
| | |
| 2. | I've read that some people can't metabolize D-Ribose. How does this manifest itself? |
Thank you for your time!
Sincerely,
Anne
ANSWER
Dear Anne,
You’re very welcome, and thanks for your kind words ;-)
You are asking two good questions.
| 1. | Ribose is metabolized very differently than regular sugar and actually has a negative "glycemic index," meaning that it likely causes weight loss, not weight gain. |
| | |
| 2. | The problem with ribose metabolism is that people with low energy production have trouble making enough ribose or holding on to it. Taking the ribose directly solves these 2 issues. In others, the problem is in making energy. Higher levels of ribose (i.e., the 2-3 scoops a day) help move the energy producing reaction forward. Because of this, taking ribose actually helps solve problems with ribose metabolism. |
What we do see (present in 2 of 41 people in our ribose study), is that some people get over energized and hyper from the ribose. This then manifests as feeling hyper or as low blood sugar symptoms. These symptoms go away by simply taking the ribose with food or lowering the dose. It also, to me, has been a marker for when people need adrenal support (adrenal function maintains blood sugar levels — when symptoms of low blood sugar occur, this suggests the need for adrenal support). The ribose can then be especially helpful in the healing process — but these side effects are a sign that one also needs adrenal support. If so, I recommend trying the "Adrenal Stress End" product (available at health food stores or at our website). This can help improve energy and improve overall health in those with symptoms of low blood sugar. For more info on adrenal issues, see The Adrenal Gland.
It sounds like this is not a problem in your case, though. If you feel better on the Corvalen/ribose (and most do), it is working fine ;-)
L&B
Dr. T
Treating migraines during pregnancy (and in general)?
Patty asks:
Hi Dr. T! I was your patient for over 10 years and still continue to function as a special education teacher only with the help of the protocol.
My daughter has been suffering with fibro and migraine headaches for a few years as well. She has recently become pregnant with her second child and her migraines have gotten more severe and debilitating! What can she do for the migraine pain while carrying the child? She just left the ER after 6 hours having been given IV fluids (good!) and Benadryl. Is there anything else she could safely use to kick and/or prevent migraine?
Hi to all the staff and...
Blessings on your continued success with educating us all about Fibro and Fatigue!
Thanks.
Patty
ANSWER
Dear Patty,
Hi!
In the emergency room, 1 gm of magnesium over 15 minutes will usually knock out a migraine and is also safe (and healthy) in pregnancy. Oral magnesium and vitamin B2 (riboflavin) can also prevent migraines, but take up to 6 weeks to see the full effect. I recommend the Energy Revitalization System vitamin powder and B complex (in health food stores and at our website) which is excellent overall, but also formulated to be excellent during pregnancy, and will supply good levels of these. See the info below on magnesium and migraines. Also take a moment to read my articles — A Comprehensive Medicine Approach to Migraines, and Top 10 Tips for a Healthy Pregnancy.
L&B
Dr. T
(The following is from my book Pain Free 1-2-3 on IV magnesium to treat migraines.)
In a hospital emergency room or a doctor's office, intravenous magnesium can effectively eliminate an acute migraine. In one study of 30 patients with moderate or severe migraine attacks, half received 1 g of magnesium sulfate IV over 15 minutes and the other half placebo. Those in the placebo group who were not better at a one half-hour were then treated with the magnesium. Immediately after treatment, at 30 minutes, and at 2 hours, 86% in the magnesium group were pain-free with the other 14% showing a reduction in pain. Associated symptoms such as nausea, light sensitivity, and irritability also resolved, and none of the patients in the magnesium group had a recurrence of pain within 24 hours. In the placebo group, no patient became pain free, and only one had a reduction in pain. When patients in the placebo group were later given the magnesium, responses were similar to subjects in the other magnesium treated group. Mild side effects, which are a normal effect of magnesium working to open blood vessels, such as a burning sensation in the face and neck, flushing, and a drop in blood pressure of 5-10 mm systolic occurred in 86% of the patients. None of these side effects was serious, and no patient had to discontinue the treatment. These results were similar to those in previous reports.
Chelation for CFS & Fibromyalgia? Is a high aluminum level significant?
BCK asks:
Dr. T,
Thanks for all the wonderful info on your site and your work in this area! Thanks for taking my question!
I'm a 38-year old male and have experienced significant, ongoing fatigue the last year or so. But the last few months have been much more significant.
I went to an internist and an endocrinologist. I have a family history of thyroid disease and the endo's tests and evaluation showed I don't have hypothyroidism yet. But I do have Hashimoto's due to an enlarged thyroid and "TPO" levels. However, he found that my testosterone was low, and that LH and FSH were low-normal, a likely contributor to the fatigue. So he ordered an MRI of the pituitary. That came back fine (thank goodness!) so he started testing and hormone replacement.
The internist ordered blood tests from Lab Corp of America on various things that might be causing the fatigue. The results showed Aluminum levels of 17 ug where 0-9 ug would be normal. He recommended 4 I.V. chelation treatments. I took one before realizing how controversial it is so I have stopped.
Are you familiar with whether this is a significant level of the metal that should be addressed? Or do you know who I could speak with/where I could go to get an expert opinion on the significance of the level of aluminum?
Thank you again.
BCK
ANSWER
Dear BCK,
The hormonal findings you are describing are normal for CFS and fibromyalgia because of the hypothalamic dysfunction. The testosterone replacement is a good idea (aim for a testosterone level of about 700-800 on replacement) and I suspect you also very much need thyroid replacement despite the "Normal" tests (see Lab Testing is NOT Reliable! and Thyroid Hormone Deficiency — An Overview).
On the other hand, that your doctor ordered chelation and looked for toxicity issues puts him ahead of most doctors.
Chelation is not controversial because of safety issues, but rather because of the politics surrounding holistic medicine, and I would be very comfortable using the chelation treatments as a patient (though I do not give them as a physician because medical boards irrationally like to take away the licenses of doctors who give it). It is controversial in the same way that it is controversial to give vitamins — not because it is unreasonable, but because it is holistic.
On the other hand, I am not convinced that you have aluminum toxicity and you should repeat the test at another lab after you make the changes below.
Aluminum (one of the most common elements in the soil) is toxic because it is oxidative (the opposite of antioxidants). I would be sure you are on a supplement high in antioxidants (like the Energy Revitalization System vitamin powder). The main sources of aluminum are:
| 1. | Antacids like Maalox or Mylanta — If ingredients note aluminum, switch to a different antacid without aluminum and see Eliminating Chronic Acid Reflux & Indigestion, my article on treating indigestion naturally. |
| | |
| 2. | Underarm deodorants — switch to the aluminum free deodorant crystals in health food stores (they have aluminum which is OK). They work well and are like deodorant sticks (i.e., easy to use). |
| | |
| 3. | Switch from aluminum cookware to stainless steel. |
Sounds like overall hormonal support (discussed in my book From Fatigued to Fantastic!) is more what you need. Chelation is OK but simply may not be needed. On the other hand, many excellent doctors use it in CFS with good results, so it certainly is unlikely to do any harm.
L&B
Dr. T
More information on sensitivity to electric fields and computers.
After the earlier Q&A repeated below, some have asked where they can get more information on testing for electric field pollution and finding plug in filters to help this problem. A good place to begin is at Stetzer Electric.
Clint asks:
Dr. T,
I had a relapse with CFS and have been out of work for a year. I notice that this time around a few months into the illness, that I am now sensitive to sitting in front of a computer screen. Symptoms: get hot, nauseated; if stay on long enough, racing heart. I notice that I'm really sensitive to it in the morning versus the evening. Any ideas?
Thanks,
Clint
ANSWER
Dear Clint,
There are those who get electromagnetic sensitivity with CFS. I begin by adding the medication Neurontin, as this is often helpful. There are devices available that some find helpful for this problem, which are made by the Clarus Company. In some cases, turning off the electric circuit to your bedroom before you go to bed (use a wind up alarm clock or a battery one kept away from your head) and leaving the electricity off at night can help (you would be amazed at some of the electromagnetic fields found in the bedroom ) can also help — especially since you are worse in the morning.
In severe cases, there are specialists that can evaluate a home for electrical pollution and assist in remediation.
If the electrical sensitivity is associated with a heightened sensitivity to light, sound, taste, smell and/or Multiple Chemical Sensitivity (MCS), consider carbon monoxide poisoning. This is being researched by Albert Donnay, who feels it is a very treatable case of CFS when MCS and environmental sensitivities are present. See Multiple Chemical Sensitivity for more information on MCS and Donnay's work.
L&B
Dr. T
Lipid replacement therapy for treating CFS patients.
Daniel asks:
Hello Dr. T,
I would love to hear your medical opinion on what is known as LRT or "lipid replacement therapy" and it`s relevance for treating CFS patients.
I Thank you in advance.
Daniel
ANSWER
Dear Daniel,
Most of this work is by Dr. Pat Kane and her husband and is geared to improving cell membrane health with IV Phospholipids. It is helpful but pricey. I would start with Dr. Nicolson's NK factor first to see if it works.
L&B
Dr. T
Treating food allergies with NAET (a special form of acupressure).
John asks:
Dr. Teitelbaum, I have had several NAET treatments for different food allergies with success. My biggest problem is with milk, which I have been treated for and cleared. I am still having problems with milk and have gone for a second opinion with another NAET practitioner who also agrees I cleared the milk and does not know why I am still having problems with this. I did have a week tolerating milk with no problems when having milk or milk products. Do you know why I would be able to tolerate milk then not be able to?
ANSWER
Dear John,
NAET is often very effective at eliminating food allergies. However, the allergy may need to be cleared on an emotional level as well as a physical level for the treatment to hold. In addition, it may be a digestion vs. allergy problem with the casein milk protein being incompletely digested into biologically active fragments, so try adding a plant based digestive enzyme (e.g., CompleteGest, available most health food stores) plus lactase (in most supermarkets in the artificial sweetener section) when using milk products (or use fermented yogurts) to see if this helps.
L&B
Dr. T
Tolerance to the sleep medication Xyrem?
Dr. T,
What is your protocol for dealing with tolerance to Xyrem? I have been on Xyrem for about 3 or 4 years for FMS and CFS, but am finding that I am only getting 2.5 hours of sleep per dose when I used to get 4. Sometimes I don't sleep at all with it. I am taking 4.5 g 2x/night.
On my own, for the past week, I have added an Ambien CR before bed and decreased each of my two Xyrem doses by 1.5 grams each night. Now, my thought is if I stop the Ambien CR and start titrating back up to the full Xyrem dose, it will work like it used to.
Make sense?
John
ANSWER
Dear John,
Tolerance to Xyrem is uncommon, but can occur with any treatment. In my practice, I will add meds to the Xyrem as needed, and even rotate treatments to restore effectiveness. It is reasonable for your doctor to do as you did, or even to taper off the Xyrem a few weeks and then retry.
Could be something else is adding a stress which is worsening your sleep instead of it being Xyrem tolerance. Optimize nutrition, and eliminate infections and other stresses as well. Then I would usually adjust sleep meds in my patients on Xyrem as needed to keep sleep optimized.
L&B
Dr. T
High ammonia levels in CFS (common and can cause brain fog).
A CFS specialist asks:
Dear Dr. T,
When is an ammonia level too high? Quest has a <47 umol/l range.
For an ammonia of 63 umol/l in a 27 year-old female, what is the recommended lactulose dose, frequency and duration of treatment and how often do you repeat testing for serum ammonia to monitor?
Any other protocols or the next layer of testing to discover why it is high?
Thanks.
Werner
ANSWER
Dear Werner,
This is a surprisingly common problem that is worth looking for in a CFS/fibromyalgia population. The cause of the elevated ammonia in some CFS patients is not clearly defined, but I suspect it relates to gut bacterial overgrowth and the bowel being alkaline. This relates to the SIBO (Small Intestinal bacterial Overgrowth) common in this illness. Ammonia is produced in the gastrointestinal tract by bacterial degradation of amines, amino acids, purines, and urea.
Lactulose use:
The medication lactulose can lower the ammonia level. Lactulose appears to inhibit intestinal ammonia production by a number of mechanisms. The conversion of Lactulose to lactic acid results in acidification of the gut lumen. This favors conversion of NH4 + to NH3 and the passage of NH3 from tissues into the lumen. Gut acidification inhibits ammonia producing E. coli bacteria, leading to increased levels of non-ammonia producing lactobacilli. Lactulose also works as a laxative, in essence washing out the "excess" bacteria.
Proper liver (and muscle) function is important to ammonia metabolism as well.
Initial lactulose dosing is 30 mL (1 ounce) orally once or twice daily as needed to have 2 loose but not diarrheal stools each day. If the ammonia is not adequately lowered after 3-4 weeks on this, the dose may be increased, but I would then consider a 10 day course of neomycin 250-500 mg TID (a non absorbable oral antibiotic made by compounding pharmacists — like a cheaper Rifaximin). Patients should be instructed to reduce lactulose dosing in the event of diarrhea, abdominal cramping, or bloating.
Love and blessings,
Dr. T
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