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Multi-faceted Treatment Approach is Best
13 Replies
larry - February 7

Chronic Fatigue Syndrome (CFIDS) and Fibromyalgia (FM) are illnesses that often coexist and affect millions of Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive problems commonly called brain fog, muscle pain and multiple infections. Unfortunately, many individuals and physicians continue to deny that these syndromes are legitimate diseases. The medical literature is, however, very clear that these are legitimate diseases and individuals with these syndromes have measurable hypothalamic, pituitary, immune and coagulation dysfunction. These abnormalities then result in a cascade of further abnormalities, in which stress plays a role. The pituitary and hypothalamic dysfunction results in multiple hormonal deficiencies that are often not detected with standard blood tests, and autonomic dysfunction, including neurally mediated hypotension. The immune dysfunction, which includes natural killer cell dysfunction, results in opportunistic infections and yeast overgrowth, making the symptoms worse. Recent studies have shown that the coagulation dysfunction is usually initiated by a viral infection and has genetic predisposition. This abnormal coagulation results in increased blood viscosity (slugging) and a deposition of soluble fibrin monomers along the capillary wall. This results in tissue and cellular hypoxia, resulting in fatigue, and decreased cognition (brain fog). Neurotransmitter abnormalities and macro and micro nutrient deficiencies have also been shown to occur with these disorders. (Thus anemia?)

 

larry - February 7

Gulf War Syndrome, which is almost identical to CFIDS and FM, was found to have a parallel cause. The cause was determined to be from multiple vaccinations under stressful conditions in susceptible individuals. These vaccines, which are viral mimics, resulted in the same coagulation cascade and the deposition of fibrin monomers, resulting in the same tissue hypoxia that occurs in FM and CFIDS. These multiple injections are being discontinued by the armed forces.

Current research suggests that many triggers can initiate a cascade of events, causing the hypothalamic, pituitary, immune and coagulation dysfunction. The most common initiating cause is a viral or bacterial infection, which is very commonly Epstein Bar Virus (EBV), Cytomegalovirus (CMV), HHV6, mycoplasma, Chlamydia pneumonia or Lyme's disease. These are found in 80% of CFIDS and FM patients. Many people with these syndromes can pinpoint the start of their disease to a viral infection that never got better. Also, stress seems to be a contributing factor.

 

larry - February 7

Effective treatment, with 80 to 90 percent of individuals achieving significant clinical benefits, can be achieved by simultaneously treating the above problems that an individual is found to have. The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals because of the pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3 is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions.

Adrenal insufficiency and growth hormone deficiency are also very common with these disorders, and supplementation with these hormones can often have profound effects. As with thyroid testing, these deficiencies are, unfortunately, usually not detected with the standard screen blood tests and require more specific testing. When an individual is found to have one of the viruses discussed above, these can be treated with resulting improvement in symptoms. It can require a combination of medications, supplements and sometimes intravenous treatments to eradicate some of the persistent infections.

 

larry - February 7

There is nothing that can be done," or "It is all in your head." ..........................

Although a concept that is sometimes uncomfortable and foreign to traditional medical styles of thinking, the need for multiple interventions is effective when an illness affects a critical control center (such as the hypothalamus), which impacts the multiple systems noted above. Unfortunately, there is not a single treatment that reverses hypothalamic dysfunction directly. Thus, this situation is different from illnesses that affect a single target organ and which can be treated with a single intervention. For example, pituitary dysfunction itself often requires treatment with several hormones. This effect is multiplied in hypothalamic dysfunction, which affects several critical systems in addition to the pituitary gland. An integrated treatment approach based on simultaneously treating the above problems is significantly beneficial in CFIDS and FM. Individuals with these devastating syndromes can "get their lives back" despite the fact that they were previously told, "There is nothing that can be done," or "It is all in your head."

 

JJ1 - February 8

Larry - I agree that a multi-faceted approach is probably needed, but when you try many approaches at once and your condition improves, you don't really know what treatment(s) resulted in your improvement. For example, you have mentioned how liquid oxygen has helped you but the literature seems to support that it is not an effective treatment. It is highly possible that it is some or one of the myriad of other treatments you are receiving at the Fibro and Fatigue centers that has (have) resulted in your improvement. For example, I feel more confident with Dream69's ginger root tea recommendation because it appears she is trying that alone with nothing else and her condition has improved. I don't know this for sure -- there could be other things in her diet or medications or lifestyle that has changed that caused her improvement, but based on her reports here, it sounds like the tea is the only thing going on. There is some advantage to working on one thing at a time when doing a multi-faceted approach.

 

dream69 - February 8

I am a male not a female so please refer to me as a he. Thank you

 

JJ1 - February 8

Dream69 - Sorry about that. It can get confusing on this site, particularly since I believe Larry is a female (right?). Since I also have a genderless name, I am a female in case anyone is wondering.

 

larry - February 9

Yes JJ1, I am a female, my name is Kathy and Larry is my husband. You have a great question on how do I know what is working is working and what is not. The reason that the fibro centers approach is multi-faceted is because of the scientific evidence that has been gathered over the years that this syndrome is multi-faceted. Ie, When fixing your car, if you put in a new engine and the tires are flat and the starter is blown, your car will still not run. So you must fix all facets. I get results in the form of measured bloodwork to show improvement in either adrenal hormones, viral levels, coagulation levels, etc. The multi facet approach is broken into 6 components over 6 months. I felt better immediately within the first month (carpal tunnel went away, painful feet, muscle stiffness) and attritubed this to getting the hormone levels adjusted because that is all I did the first month. It isn't always that easy though for me to tell and I don't really care which of the medicines/supplements is helping as long as I know they are helping how I feel and I am getting better. I don't have to "try" things on my own or teach the doctor. They have healed thousands of of patients with their proven medical protocol. Additionally ,the fibro center works with patients on a clinical level as well, meaning they will adjust your supplements and levels based on your symptoms and not dismiss you like conventional doctors do that place more emphasis on the test results which are inaccurate 90% of the time when It comes to the Thyroid-Adrenal-pitutary-hypothalmus. A perfect case & point- my husband has been diabetic since he was 5 years old, now he is 49. He visits his endochrinologist EVERY 3 months for the past 25 years. Well my hubbie has similar symptoms to what I had -low body temp, getting tired easily, dry skin, pain through out the body, losing memory, getting sick more often, IBS, weight gain, white coating on wide, fat tongue, etc I suggested that he ask for a complete thyroid panel as well as the pit, adrenal, hypothalmus, etc., the next time he visited his doctor. SO he did and his doctor called on Tuesday telling us that his thyroid is fine. Since I read Mary Shomon's books I knew to check for the ranges and for which hormones were tested. I was suspicious as my husbands symptoms mirror classic hypothyroidism if not full blown fibro (actually nearly 100% of fibro patients are hypothyroid). I took my husbands tests results with me to the fibro center as I had my 5th month appt. yesterday. My doc confirmed what I learned from Mary's books. Several years ago The American Association of Endochrinologists changed the ranges of TSH level taking from a 5 down to a 3. To be considered hypothyroid your TSH level now only needs to be a 3, instead of waiting a longer period of time and getting sicker until your TSH reaches 5. My husbands TSH is 2.9 which means if this Endochrinologist (supposedly the BEST in Westchester county) got updated and used the new standards that were set several years ago my husband would be considered Hypothyroid. Additionally, this doctor never checked for t3 and t3 reverse as well as never looked at the complete picture with the hypothalamus-adrenal-thyroid-pitutary. This example is unfortunately what is happening EVERYday to thousands of sick people going to their endochrinologist, they get a doctor that says your thyroid is fine based on outdated standards and inaccurate testing and complete dismissal of your symptoms. There are many, many books on this. As far as your question about the liquid oxygen and how do I know if the liquid oxygen is what makes me feel better- well it is like when you drink a warm cup of cammoille tea and you get calm or sleepy or when you drink a strong cup of coffee and you get buzzed, when I put my own oxygen in my water or drink at my own strength (I don’t buy oxygenated drinks) I feel very alert, it increases my energy and stamina and I get a lot done that day. So when I feel fatigued it makes an immediate difference.. I will post some additional info for you to understand, oxygen therapies have been around for 5,000 years but not well known in the US. We are a bit behind.

 

larry - February 9

100 years, sorry-

 

Iinda - March 2

Hi Kathy. I haven't been around in a while, so I thought I'd drop a note here to say hello. It's good to see that you are still posting your successes and helpful information on the forum! How is your treatment going at Fibro & Fatigue Centres these days? Love to hear from you. Take care, Linda.

 

larry - March 9

Hi Linda. Good to hear from you ! I am doing very well. I go for my 6 month appt. to my Fibro and Fatigue next week!! I also have not been around in awhile. I get tired of just reading about symptoms and I have nothing to contribute on the symptoms posts anymore. I have no more brain fog, no more pain, no more heart paplipations, no more insommina, no more anemia, no more carpal tunnel syndrome, no more fatigue, etc. Let me know how you are making out. How long hae been going to the Fibro and Fatigue Centers now? How are you feeling? Did you get the results yet from the infections and diseases yet? And did it blow your mind? let me know how you are.................

 

Iinda - March 11

Hi Kathy, I do not go to Fibro Fatigue Centres..... but its nice to hear that you are doing so well. Take care.

 

skidoo - March 11

I am wondering if anyone has **completed** treatment at the Fibro and Fatigue Center? All of the testimonials I have seen on various discussions sites are from people who are at some point in the middle of the process. I would like to know this from those who have completed all 6 steps: 1. How long did it take?__________________ 2. What was the total cost for everything (including lab tests and supplements)?______________ 3. How much of this was covered by your insurance and who is your insurance?______________ 4. What is the frequency and cost of follow up visits after you have completed the process?________________ ---I fully understand that this process is different for each and every individual but I would like to know these answers how they pertain to an individual.___________ ---If there is no one who has completed the process can anyone tell me who is going there now: 1. How long have you been going? _______________2. What step are you on?_______________ 3. What is your total cost so far?______________ 4. How much of the total cost was covered by insurance and who is your insurance carrier?

 

larry - March 11

Sorry about that Linda. I also participate on the forum at http://www.fibromyalgia.md/ where there are alot of people there getting well at the Fibro and Fatigue Centers. One of the ladies there shared with me that her real name is Linda and that she has also posted on this web site-so I thought you were her. My apologies.

 

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