Cure Together Survey Summary

[slayadragon]

The Cure Together website offers surveys allowing patients with various diseases to rate whether specific treatments were helpful or harmful to them. As of 5/28/13, more than 500 patients had responded to the survey about CFS.

Listed here (compiled by me) are the percentages of people (out of those who tried it) who found each treatment to be of moderate or major effectiveness.

Also listed are treatments in which 20% or more (out of those who tried it) reported that it had made their condition much or moderately worse.


70%+ Effectiveness:
Spend time in low stimulation environment. 72%
Take frequent rest breaks. 71%
Wheelchair. 71%

60%+ Effectiveness:
T3. 65%
Rest. 64%
Personal development (learn to say no). 63%
Low Dose Naltrexone (LDN). 62%

50%+ Effectiveness:
Avoid allergens. 59%
Avoid biotoxins. 57%
Invert body position. 56%
Ignore people who think ME/CFIDS is not real. 54%
Mindfulness. 54%
Meditation. 53%
Diet changes. 52%
Qi Gong. 52%
Klonopin. 51%
Treat methylation. 51%
Change job. 50%

40%+ Effectiveness:
Avoid mold. 49%
Massage. 49%
Reduce sugar. 49%
Stimulants. 49%
Treat yeast. 49%
Tramadol. 49%
FIR sauna. 47%
Ritalin. 47%
Avoid gluten. 46%
B12 Injections. 46%
Antivirals. 45%
Diaphragmatic breathing. 45%
Avoid dairy. 44%
Lymphatic Massage. 44%
Avoid alcohol. 43%
Go to bed early/sleep longer. 43%
Sinus treatments. 43%
Stretching. 43%
Probiotics. 42%
Cranial Sacral. 42%
Xanax. 42%
Amygdala retraining. 41%
Baclofen. 41%
Ibuprofen. 41%
Yoga. 41%
Ayurveda. 41%
Betaine Hcl. 40%
Chiropractic. 40%
Electrolyte beverages. 40%

30%+ Effectiveness
Oral magnesium. 39%
Doxycycline. 39%
Cymbalta. 38%
Guaifenesin. 38%
Malic acid. 38%
NAC. 38%
Osteopathy. 38%
Stay well-hydrated. 38%
Antibiotics. 37%
Testosterone. 37%
Tai Chi. 37%
Bioidentical Hormones (e.g. progesterone). 36%
Chelation. 36%
Immunovir. 36%
Soak feet in cold water. 36%
Sublingual B12. 36%
Topical magnesium. 36%
Cortef. 35%
Provigil. 35%
Wellbutrin. 35%
Antihistimines. 34%
Cool shower following exertion. 34%
D-Ribose. 34%
Emotional Freedom Technique (EFT). 34%.
Myers’ Cocktail. 34%
Naproxen. 34%
DHEA. 33%
Distract attention from symptoms. 33%
Root canal/cavitation removal. 33%
Acetyl-L-Carnitine. 32%
B Vitamins 32%
Chinese herbs. 32%
Eat more produce. 32%
Liposomal glutathione. 32%
Reiki. 32%
Anti-Yeast Diet. 31%
Beta Blockers. 31%
Cerefolin. 31%
Melatonin. 31%
Neurontin. 31%
Tylenol. 31%
Vitamin D. 31%
Omega 3. 31%
Acupuncture. 30%
Benadryl. 30%
Ionized water. 30%
MSM. 30%

20%+ Effectiveness:
Amitriptyline. 29%
Mild/Moderate Exercise. 29%
Alpha Lipoic Acid. 28%
Kinesiology. 28%
Licorice Root Extract. 28%
Trazadone. 28%
Celexa. 28%
Aspirin. 27%
CoQ10. 27%
L-Carnitine. 27%
Homeopathy. 27%
Inosine. 26%
Iodine. 26%
5HTP. 25%
Caffeine. 25%
Omega 3, 6, 9. 25%
Psychotherapy. 25%
Regular Exercise Program. 25%
SSRIs. 25%
Cognitive-Behavioral Therapy (CBT). 24%
Vitamin C (Lypospheric). 24%
Effexor. 23%
Glucosamine/Chondroitin. 23%
Orthostatic conditioning. 23%
NADH. 22%
Undenatured whey. 22%
Gingko Biloba. 21%
Rolfing. 21%
Vitamin E. 21%
Fresh Juicing/Smoothies. 20%

Less Than 20% Effectiveness:
Brainwave Audio CD’s. 19%
Olive Leaf Extract. 19%
Prozac. 19%
SAM-E. 19%
Skin Brushing. 19%
Doxylamine. 18%
Graded Exercise Therapy (CBT). 18%
Cat’s Claw. 17%
GABA. 17%
Neurofeedback. 17%
Garlic. 16%
Zoloft. 16%
Paroxetine. 15%
Alcohol. 14%
Detox Foot Baths. 14%
Vitamin A. 13%
Rebounder. 11%
Monolaurin. 8%

Treatments with 20%+ Reporting Declines:
Graded Exercise Therapy (75%)
Paxil (59%)
Alcohol (57%)
Prozac (46%)
Regular Exercise Program (45%)
Zoloft (44%)
Effexor (43%)
Elavil (43%)
SSRI’s (43%)
Mild/Moderate Exercise (43%)
Trazodone (40%)
Wellbutrin (38%)
Caffeine (37%)
Cymbalta (36%)
Celexa (32%)
Neurontin (32%)
Orthostatic Conditioning/Exercise (32%)
Provigil (31%)
Benadryl (28%)
SAM-E (23%)
Cognitive/Behavioral Therapy (CBT) 20%


http://curetogether.com/chronic-fatigue-syndrome/treatments/

 

[slayadragon]

Survey Discussion:

Only a relatively small number of different types of treatments were reported as helpful by more than half of those survey respondents who had tried them.

Topping the list were “pacing” activities: spending time in low-stimulation environments, taking rest breaks, learning to say no, ignoring people who didn’t believe in the illness, meditation, mindfulness and changing job (presumably to a less stressful one). A high percentage of the relatively small number of participants who had tried a wheelchair found it helpful.

Avoidance of “biotoxins” (presumably including toxic mold) was found to be helpful for 57% of respondents. About 59% said that they had been helped by avoiding “allergens” (unspecified, possibly including food). Just over half said that they had been helped by changes in diet (also unspecified).

Only a few drugs were found helpful by more than 50% of patients who had tried them: T3 (a form of thyroid hormone), Low-Dose Naltrexone (an immune modulator) and Klonopin (a benzodiazapine often prescribed for sleep). Treating methylation (presumably with supplements such as activated folate and B12) was found helpful by just over half of respondents.

Two other interventions with more than 50% of participants reporting positive outcomes were qi gong and inversion of body position.

Also rating fairly highly in the survey (with 43-49% reporting benefits) were a variety of other kinds of avoidance activities -- mold, sugar, gluten, dairy and alcohol. (About 140 people responded to the item about “avoiding mold,” compared to only 70 to the item about “avoiding biotoxins,”)

Several bodywork treatments (massage, lymphatic massage, far infrared sauna, stretching, cranial sacral, yoga, chiropractic, diaphragmatic breathing) all were found helpful by more than 40% of those who tried them.

Treating yeast and sinus infections (presumably frequently caused by fungi) were reported as helpful by about 45% of those who had tried this. The alternative treatments of amygdala retraining and ayurveda were found effective by about the same percentage, as was simply going to bed earlier and sleeping longer.

Supplements and drugs found helpful by 40-49% of participants who had tried them included B12 shots; probiotics; betaine Hcl; electrolyte beverages; Xanax; antivirals; Ritalin and other stimulants; and the pain relievers tramadol, baclofen and ibuprofen.

Reported as helpful by less than 40% of respondents who had tried them were a vast smorgasbord of other drugs, supplements and alternatives. None of these was reported as having prompted a major improvement by any more than a tiny percentage (less than 5%) of people reporting.

Ironically, two treatment types frequently suggested for CFS by non-specialists -- anti-depressants and exercise -- appear to be by far the least appropriate for the disease, based on this survey. Relatively few respondents (less than 30%) reported being helped by these treatments, and relatively high percentages (30-75%) who had tried them said that they had been harmed by them.

Other treatments that were reported as having had negative effects by substantial numbers of respondents were alcohol (57%), caffeine (37%), neurontin (32%), Provigil (31%), Benadryl (28%), SAM-E (23%) and cognitive-behavioral therapy (20%).

-Lisa Petrison, Ph.D.

 

[caledonia]

Great summary! It's nice to see GET and ADs at the bottom.

 

[slayadragon]

Would this way of organizing the information be better?

Thanks, Lisa

*

70%+ Effectiveness:
Lifestyle:
* Spend time in low stimulation environment. 72%
* Take frequent rest breaks. 71%
* Wheelchair. 71%

60%+ Effectiveness:
Lifestyle:
* Rest. 64%
* Personal development (learn to say no). 63%
Hormones:
* T3. 65%
Drugs:
* Low Dose Naltrexone (LDN). 62%

50%+ Effectiveness:
Avoidance:
* Avoid allergens. 59%
* Avoid biotoxins. 57%
Lifestyle:
* Ignore people who think ME/CFIDS is not real. 54%
* Mindfulness. 54%
* Meditation. 53%
* Change job. 50%
Diet/Nutrition:
* Diet changes. 52%
* Treat methylation. 51%
Bodywork:
* Invert body position. 56%
* Qi Gong. 52%
Drugs:
* Klonopin. 51%

40%+ Effectiveness:
Avoidance:
* Avoid mold. 49%
* Reduce sugar. 49%
* Avoid gluten. 46%
* Avoid dairy. 44%
* Avoid alcohol. 43%
Bodywork:
* Massage. 49%
* FIR sauna. 47%
* Diaphragmatic breathing. 45%
* Lymphatic Massage. 44%
* Stretching. 43%
* Cranial Sacral. 42%
* Yoga. 41%
* Chiropractic. 40%
Drugs:
* Stimulants. 49%
* Tramadol. 49%
* Ritalin. 47%
* Antivirals. 45%
* Xanax. 42%
* Baclofen. 41%
* Ibuprofen. 41%
Infections:
* Treat yeast. 49%
* Sinus treatments. 43%
Supplements/Nutrition:
* B12 Injections. 46%
* Probiotics. 42%
* Betaine Hcl. 40%
* Electrolyte beverages. 40%
Lifestyle:
* Go to bed early/sleep longer. 43%
* Amygdala retraining. 41%
Alternative:
* Ayurveda. 41%

30%+ Effectiveness
Supplements/Nutrition:
* Oral magnesium. 39%
* Malic acid. 38%
* NAC. 38%
* Stay well-hydrated. 38%
* Sublingual B12. 36%
* Topical magnesium. 36%
* D-Ribose. 34%
* Myers’ Cocktail. 34%
* Acetyl-L-Carnitine. 32%

• • B Vitamins 32%
  • Chinese herbs. 32%

* Eat more produce. 32%
* Liposomal glutathione. 32%
* Anti-Yeast Diet. 31%
* Vitamin D. 31%
* Omega 3. 31%
* Cerefolin. 31%
* Ionized water. 30%
* MSM. 30%
Hormones:
* Testosterone. 37%
* Bioidentical Hormones (e.g. progesterone). 36%
* Cortef. 35%
* DHEA. 33%
* Melatonin. 31%
Antibiotics:
* Doxycycline. 39%
* Antibiotics. 37%
Antidepressants:
* Cymbalta. 38%
* Wellbutrin. 35%
Bodywork:
* Osteopathy. 38%
* Tai Chi. 37%
* Soak feet in cold water. 36%
* Cool shower following exertion. 34%
* Root canal/cavitation removal. 33%
* Reiki. 32%
* Acupuncture. 30%
Other Drugs:
* Guaifenesin. 38%
* Chelation. 36%
* Immunovir. 36%
* Provigil. 35%
* Antihistimines. 34%
* Naproxen. 34%
* Beta Blockers. 31%
* Neurontin. 31%
* Tylenol. 31%
* Benadryl. 30%
Lifestyle:
* Emotional Freedom Technique (EFT). 34%.
* Distract attention from symptoms. 33%

20%+ Effectiveness:
Antidepressants:
* Amitriptyline. 29%
* Trazadone. 28%
* Celexa. 28%
* SSRIs. 25%
* Effexor. 23%
Exercise:
* Mild/Moderate Exercise. 29%
* Regular Exercise Program. 25%
* Orthostatic conditioning. 23%
Supplements/Nutrition:
* Alpha Lipoic Acid. 28%
* Licorice Root Extract. 28%
* CoQ10. 27%
* L-Carnitine. 27%
* Inosine. 26%
* Iodine. 26%
* 5HTP. 25%
* Omega 3, 6, 9. 25%
* Vitamin C (Lypospheric). 24%
* Glucosamine/Chondroitin. 23%
* NADH. 22%
* Undenatured whey. 22%
* Gingko Biloba. 21%
* Vitamin E. 21%
* Fresh Juicing/Smoothies. 20%
Alternative:
* Kinesiology. 28%
* Homeopathy. 27%
Other Drugs:
* Aspirin. 27%
* Caffeine. 25%
Lifestyle:
* Psychotherapy. 25%
* Cognitive-Behavioral Therapy (CBT). 24%
Bodywork:
* Rolfing. 21%

Less Than 20% Effectiveness:
Lifestyle:
* Brainwave Audio CD’s. 19%
* Neurofeedback. 17%
Supplements:
* Olive Leaf Extract. 19%
* SAM-E. 19%
* Cat’s Claw. 17%
* GABA. 17%
* Garlic. 16%
* Vitamin A. 13%
* Monolaurin. 8%
Antidepressants:
* Prozac. 19%
* Zoloft. 16%
* Paroxetine. 15%
Bodywork:
* Skin Brushing. 19%
* Detox Foot Baths. 14%
* Rebounder. 11%
Other Drugs:
* Doxylamine. 18%
* Alcohol. 14%
Exercise:
* Graded Exercise Therapy (CBT). 18%

Treatments with 20%+ Reporting Declines:
Exercise:
* Graded Exercise Therapy (75%)
* Regular Exercise Program (45%)
* Mild/Moderate Exercise (43%)
* Orthostatic Conditioning/Exercise (32%)
Antidepressants:
* Paxil (59%)
* Prozac (46%)
* Zoloft (44%)
* Effexor (43%)
* Elavil (43%)
* SSRI’s (43%)
* Trazodone (40%)
* Wellbutrin (38%)
* Cymbalta (36%)
* Celexa (32%)
Other Drugs:
* Alcohol (57%)
* Caffeine (37%)
* Neurontin (32%)
* Provigil (31%)
* Benadryl (28%)
* SAM-E (23%)
Lifestyle:
* Cognitive/Behavioral Therapy (CBT) 20%

 

[WillowJ]

or put yet another way, here is the second version with +/- side by side:

70%+ Effectiveness:
Lifestyle:
* Spend time in low stimulation environment. 72%
* Take frequent rest breaks. 71%
* Wheelchair. 71%

60%+ Effectiveness:
Lifestyle:
* Rest. 64%
* Personal development (learn to say no). 63%
Hormones:
* T3. 65%
Drugs:
* Low Dose Naltrexone (LDN). 62%

50%+ Effectiveness:
Avoidance:
* Avoid allergens. 59%
* Avoid biotoxins. 57%
Lifestyle:
* Ignore people who think ME/CFIDS is not real. 54%
* Mindfulness. 54%
* Meditation. 53%
* Change job. 50%
Diet/Nutrition:
* Diet changes. 52%
* Treat methylation. 51%
Bodywork:
* Invert body position. 56%
* Qi Gong. 52%
Drugs:
* Klonopin. 51%

40%+ Effectiveness:
Avoidance:
* Avoid mold. 49%
* Reduce sugar. 49%
* Avoid gluten. 46%
* Avoid dairy. 44%
* Avoid alcohol. 43%
Bodywork:
* Massage. 49%
* FIR sauna. 47%
* Diaphragmatic breathing. 45%
* Lymphatic Massage. 44%
* Stretching. 43%
* Cranial Sacral. 42%
* Yoga. 41%
* Chiropractic. 40%
Drugs:
* Stimulants. 49%
* Tramadol. 49%
* Ritalin. 47%
* Antivirals. 45%
* Xanax. 42%
* Baclofen. 41%
* Ibuprofen. 41%
Infections:
* Treat yeast. 49%
* Sinus treatments. 43%
Supplements/Nutrition:
* B12 Injections. 46%
* Probiotics. 42%
* Betaine Hcl. 40%
* Electrolyte beverages. 40%
Lifestyle:
* Go to bed early/sleep longer. 43%
* Amygdala retraining. 41%
Alternative:
* Ayurveda. 41%

30%+ Effectiveness
Supplements/Nutrition:
* Oral magnesium. 39%
* Malic acid. 38%
* NAC. 38%
* Stay well-hydrated. 38%
* Sublingual B12. 36%
* Topical magnesium. 36%
* D-Ribose. 34%
* Myers’ Cocktail. 34%
* Acetyl-L-Carnitine. 32%
* B Vitamins 32%
* Chinese herbs. 32%
* Eat more produce. 32%
* Liposomal glutathione. 32%
* Anti-Yeast Diet. 31%
* Vitamin D. 31%
* Omega 3. 31%
* Cerefolin. 31%
* Ionized water. 30%
* MSM. 30%
Hormones:
* Testosterone. 37%
* Bioidentical Hormones (e.g. progesterone). 36%
* Cortef. 35%
* DHEA. 33%
* Melatonin. 31%
Antibiotics:
* Doxycycline. 39%
* Antibiotics. 37%
Antidepressants:
* Cymbalta. 38%+/36%-
* Wellbutrin. 35%+/38%-
Bodywork:
* Osteopathy. 38%
* Tai Chi. 37%
* Soak feet in cold water. 36%
* Cool shower following exertion. 34%
* Root canal/cavitation removal. 33%
* Reiki. 32%
* Acupuncture. 30%
Other Drugs:
* Guaifenesin. 38%
* Chelation. 36%
* Immunovir. 36%
* Provigil. 35%+/31%-
* Antihistimines. 34%
* Naproxen. 34%
* Beta Blockers. 31%
* Neurontin. 31%+/32%-
* Tylenol. 31%
* Benadryl. 30%
Lifestyle:
* Emotional Freedom Technique (EFT). 34%.
* Distract attention from symptoms. 33%

20%+ Effectiveness:
Antidepressants:
* Amitriptyline. 29%
* Trazadone. 28%+/40%-
* Celexa. 28%+/32%-
* SSRIs. 25%+/43%-
* Effexor. 23%+/43%-
Exercise:
* Mild/Moderate Exercise. 29%/ 43%-
* Regular Exercise Program. 25%+/45%-
* Orthostatic conditioning. 23%/ 32%-
Supplements/Nutrition:
* Alpha Lipoic Acid. 28%
* Licorice Root Extract. 28%
* CoQ10. 27%
* L-Carnitine. 27%
* Inosine. 26%
* Iodine. 26%
* 5HTP. 25%
* Omega 3, 6, 9. 25%
* Vitamin C (Lypospheric). 24%
* Glucosamine/Chondroitin. 23%
* NADH. 22%
* Undenatured whey. 22%
* Gingko Biloba. 21%
* Vitamin E. 21%
* Fresh Juicing/Smoothies. 20%
Alternative:
* Kinesiology. 28%
* Homeopathy. 27%
Other Drugs:
* Aspirin. 27%
* Caffeine. 25%+/37%-
Lifestyle:
* Psychotherapy. 25%
* Cognitive-Behavioral Therapy (CBT). 24%+/20%-
Bodywork:
* Rolfing. 21%

Less Than 20% Effectiveness:
Lifestyle:
* Brainwave Audio CD’s. 19%
* Neurofeedback. 17%
Supplements:
* Olive Leaf Extract. 19%
* SAM-E. 19%
* Cat’s Claw. 17%
* GABA. 17%
* Garlic. 16%
* Vitamin A. 13%
* Monolaurin. 8%
Antidepressants:
* Prozac. 19%/46%-
* Zoloft. 16%+/44%-
* Paroxetine. 15%
Bodywork:
* Skin Brushing. 19%
* Detox Foot Baths. 14%
* Rebounder. 11%
Other Drugs:
* Doxylamine. 18%
* Alcohol. 14%+/57%-
Exercise:
* Graded Exercise Therapy (CBT). 18%+/76%-

Treatments with 20%+ Reporting Declines:
Exercise:
* Graded Exercise Therapy 18%+/75%-
* Regular Exercise Program 25%+/45%-
* Mild/Moderate Exercise 29%+/43%-
* Orthostatic Conditioning/Exercise 23%+/32%-
Antidepressants:
* Paxil 59%-
* Prozac 19%+/46%-
* Zoloft 16%+/44%-
* Effexor 23%+/43%-
* Elavil 43%-
* SSRI’s 25%+/43%-
* Trazodone 28%+/40%-
* Wellbutrin 35%+/38%-
* Cymbalta 38%+/36%-
* Celexa 28%+/32%-
Other Drugs:
* Alcohol 14%+/57%-
* Caffeine 25%+/37%-
* Neurontin 31%+/32%-
* Provigil 35%+/31%-
* Benadryl 28%- (antihistimines 34%+)
* SAM-E 19%+/23%-
Lifestyle:
* Cognitive/Behavioral Therapy (CBT) 24%+/20%-

 

[Little Bluestem]

At first I was surprised to see T3 so high on the list. Then I realized that it would not be prescribed unless the person’s physician thought it could be helpful. That almost makes the 65% seem low. Does anyone know if T3 is available without prescription anywhere in the world?

 

[A.B.]

Ironically, two treatment types frequently suggested for CFS by non-specialists -- anti-depressants and exercise -- appear to be by far the least appropriate for the disease, based on this survey. Relatively few respondents (less than 30%) reported being helped by these treatments, and relatively high percentages (30-75%) who had tried them said that they had been harmed by them.

Psychiatrists are responsible for this. Their entire profession is dysfunctional, and out of touch with reality. It resembles a cult whose members believe that they have supernatural intelligence and intuition with no need for reality checks.

I'm being very harsh here, but it's appropriate. A profession that even after 30 years is unable to tell whether their treatments are helping or harming patients deserves nothing less.

 

[Gemini]

The Cure Together website offers surveys allowing patients with various diseases to rate whether specific treatments were helpful or harmful to them. As of 5/28/13, more than 500 patients had responded to the survey about CFS.

Listed here (compiled by me) are the percentages of people (out of those who tried it) who found each treatment to be of moderate or major effectiveness.

Also listed are treatments in which 20% or more (out of those who tried it) reported that it had made their condition much or moderately worse.

http://curetogether.com/chronic-fatigue-syndrome/treatments/

Slaydragon, thanks for posting a great summary.

Be interesting to compare this data to that collected in the two recent online ME/CFS patient surveys Dr. Lily Chu's & CAA's when they're posted.

PS was IV saline or IV gammaglobulin listed? I don't think I saw them?

 

[slayadragon]

I see that there were three people who had tried IVIG and that they all thought it had had no effect on their CFS. (I personally know one person who periodically gets very small amounts of IVIG and thought that it had been helpful though.)

I don't see saline IV's listed.

 

[rijichouno]

Can anyone elaborate on body inversion? Is it used primarily for pain or does it help with brain fog, or...? It strikes me that it came out as one of the top treatments and yet there seems to be nothing about it online specifically in relation to CFS.

 

[saint]

I am very grateful that you took the time to post that. I have been struggling with fibromyalgia for far too long. I keep thinking: if I try this, it will work, if I try that, it will work. I've tried a lot of the above and I'm still sore and tired.

What else is there? There HAVE to be people cured of this. Where are they? How can we find them and follow what they did?

 

[WillowJ]

I am very grateful that you took the time to post that. I have been struggling with fibromyalgia for far too long. I keep thinking: if I try this, it will work, if I try that, it will work. I've tried a lot of the above and I'm still sore and tired.

What else is there? There HAVE to be people cured of this. Where are they? How can we find them and follow what they did?

Even when using a more specific definition for ME, we suspect the situation might be that there are at least two groups (we keep coming up with a 2/3 to 1/3 split: 2/3 responders to rituxan, two groups of mRNA expression in the Light studies, etc.), and possibly lots of groups. Things that work for one person will not necessarily work for others. Nonetheless, good research is being published and more is coming.

In fibro, they are making advances studying nerve endings in the skin. These are small studies but very interesting. Once they step away from a central sensitization (as primary) model and look for more substantial pathology, they should get on better. There is also some data showing a few people (again 1/3?) diagnosed with fibro respond to antimicrobial treatment (not sure if it was antivirals or antibacterials... not that a virus is technically a 'microbe', but somehow when the two types are lumped together it becomes 'antimicrobial', though that could cover antifungal, too).

Some people are having some success with various treatments on that list above (e.g. low dose naltrexone, methylation, antivirals, antivirals and immune modulators, mold avoidance) but this may or may not work for others and we don't have enough science yet to say which people will respond to what treatment.

all the best

 

[alex3619]

The real trick will be identifying responder biomarkers. There will come a day when a patient can have some tests, fill in a few forms, and the docs can confidently predict what treatments will work. Sadly that day will not be soon. It still comes down to the lemon rule: suck it and see. It least with some survey data we have an idea of what to try first - and what to avoid.

 

[saint]

Even when using a more specific definition for ME, we suspect the situation might be that there are at least two groups (we keep coming up with a 2/3 to 1/3 split: 2/3 responders to rituxan, two groups of mRNA expression in the Light studies, etc.), and possibly lots of groups. Things that work for one person will not necessarily work for others. Nonetheless, good research is being published and more is coming.

In fibro, they are making advances studying nerve endings in the skin. These are small studies but very interesting. Once they step away from a central sensitization (as primary) model and look for more substantial pathology, they should get on better. There is also some data showing a few people (again 1/3?) diagnosed with fibro respond to antimicrobial treatment (not sure if it was antivirals or antibacterials... not that a virus is technically a 'microbe', but somehow when the two types are lumped together it becomes 'antimicrobial', though that could cover antifungal, too).

Some people are having some success with various treatments on that list above (e.g. low dose naltrexone, methylation, antivirals, antivirals and immune modulators, mold avoidance) but this may or may not work for others and we don't have enough science yet to say which people will respond to what treatment.

all the best

Thanks. I am really bottoming out. Went on Famvir & Celebrex (Doc Pridgen protocol) then went off morphine (anyone been to hell yet? Try getting off morphine)

Went on LDN and it's doing NOTHING - have read many good things about but I'm on 3rd night & feel TERRIBLE. Yesterday those old thoughts of just signing out crept back. So very very tired of trying to fight this.

Has anyone tried the Mast Cell products that are supposed to help?

 

[saint]

Thanks. I am really bottoming out. Went on Famvir & Celebrex (Doc Pridgen protocol) then went off morphine (anyone been to hell yet? Try getting off morphine)

Went on LDN and it's doing NOTHING - have read many good things about but I'm on 3rd night & feel TERRIBLE. Yesterday those old thoughts of just signing out crept back. So very very tired of trying to fight this.

Has anyone tried the Mast Cell products that are supposed to help?

Can you possibly provide me with a link to the studies on fibro where they are having success treating it? thx

 

[alex3619]

Overdosing on LDN will always cause an increase in pain and discomfort. This is particularly the case for Naltrexone rather than LDN, or if high doses are used. Naltrexone must be sustained release and very very low doses.

LDN does not work on everyone though. In me I got slight benefit, but not enough to justify continued use.

 

[saint]

I didn't overdose on LDN - I was put on low dose. When did you know that it wasn't going to work for you? I can't take this pain.

Did anything work for you?

 

[liverock]

@saint A study checking the gut for Small Intestinal Bacteria Overgrowth (SIBO), with a Lactulose Breath Test in 42 women with Fibro showed !00% correlation. There was also a high level of infection which accounts for the high pain level.

http://syontix.com/fibromyalgia-irritable-bowel-syndrome-and-endotoxemia/

I think you should get your doctor to do the test and prescribe a suitable antibiotic protocol if positive. Show him this study from Cedars-Sinai Hospital if he needs convincing.

http://www.ncbi.nlm.nih.gov/pubmed/15020342

Ann Rheum Dis. 2004 Apr;63(4):450-2.
A link between irritable bowel syndrome and fibromyalgia may be related to findings on lactulose breath testing.
Pimentel M1, Wallace D, Hallegua D, Chow E, Kong Y, Park S, Lin HC.
Author information

• 1GI Motility Program, Divisions of Gastroenterology and Rheumatology, Department of Medicine, Cedars-Sinai Medical Center, CSMC Burns & Allen Research Institute, Los Angeles, California 90048, USA.

Abstract
BACKGROUND:
An association between irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO) has been found.
OBJECTIVE:
To compare the prevalence and test results for bacterial overgrowth between IBS and fibromyalgia.
METHODS:
Subjects with independent fibromyalgia and IBS were compared with controls in a double blind study. Participants completed a questionnaire, and a lactulose hydrogen breath test was used to determine the presence of SIBO. The prevalence of an abnormal breath test was compared between study participants. Hydrogen production on the breath test was compared between subjects with IBS and fibromyalgia. The somatic pain visual analogue score of subjects with fibromyalgia was compared with their degree of hydrogen production.
RESULTS:
3/15 (20%) controls had an abnormal breath test compared with 93/111 (84%) subjects with IBS (p<0.01) and 42/42 (100%) with fibromyalgia (p<0.0001 v controls, p<0.05 v IBS). Subjects with fibromyalgia had higher hydrogen profiles (p<0.01), peak hydrogen (p<0.0001), and area under the curve (p<0.01) than subjects with IBS. This was not dependent on the higher prevalence of an abnormal breath test. The degree of somatic pain in fibromyalgia correlated significantly with the hydrogen level seen on the breath test (r = 0.42, p<0.01).
CONCLUSIONS:
An abnormal lactulose breath test is more common in fibromyalgia than IBS. In contrast with IBS, the degree of abnormality on breath test is greater in subjects with fibromyalgia and correlates with somatic pain.
PMID:15020342
[PubMed - indexed for MEDLINE]

If your not already on a Gluten free diet you should try it and check the difference.

http://syontix.com/fibromyalgia-and-non-celiac-gluten-sensitivity/

.

 

[saint]

Thanks very much for that information. I immediately emailed the links to my doctor and asked for a test for it. I have been on so many antibiotics, I don't know how anything could be left alive in me. Since my immune system was down (my blood tests showed a 2 - dr. said I have almost no immune system & no adrenal function).

I kept getting sore throats from germs anyone who entered my house brought in. I use an air cleaner, but had to go on repeated doses of antibiotics. That was one of the reasons I asked my dr. to go on LDN - it shoots your immune system up, but it isn't providing ANY pain relief. Radio mentioned SIBO several times & I recall Dr. Myhill writing about & recommending to disinfect with large doses of vitamin C.

I just got an order in the other day of powdered vitamin C & I'll try that until I hear back from my doctor.

I emailed Dr. Nicholson and he sent me an attachment about the role of infections in fibromyalgia. It was very technical & I am not at my best right now.

Do you know if there are other natural things that work against SIBO, or must they be treated by antibiotics? Maybe the antibiotics I was on don't kill the particular pathogens in SIBO.

I have been on a completely gluten-free diet.

I would appreciate any more information. I think I bit off more than I could chew with doing the famvir/ celebrex, then going off pain meds to try LDN. I read such glowing things about LDN I thought "that" was my answer. So sick of blind alleys.

 

[alex3619]

I didn't overdose on LDN - I was put on low dose. When did you know that it wasn't going to work for you? I can't take this pain.

Did anything work for you?

I tried it for a year.

Some patients have to start on really tiny doses, the initial response is variable. They then titrate the doses slowly. Starting doses should never exceed 1.5mg, but eventually it should rise (if tolerated) to about 4.5 mg. Some patients however have to start on 0.1 mg or so. It varies.