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News
Fibromyalgia Research Foundation
The Metabolic Treatment New Book
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October
2, 2002
You mentioned support groups in your talk. What I’d like to know is this: When you were sick with fibromyalgia, did you find any good local support groups? Or did you just go it on your own? I’d like to have an e-mail sort of support with someone who is going through the same things as myself. But to drive long distances would be too difficult. I live in Winlock, WA., and if you know of someone I can get in touch with, this would be great. But if you think it best to wing it on my own, I'll bow to your suggestion since you've been there and know the best way to go about this. Keep up the good work you are doing. Vicky: Thank you for writing me and letting me know you found our presentations valuable. You're an encouragement to me. At the workshop, I asked if anybody in the audience was from a support group for a specific reason. I had contacted several support group leaders in the Seattle area to let them know Dr. Lowe and I were going to be speaking, and I asked if they would share this with their group members. I wasn't surprise when no support group leaders or group members came to the presentations. The reason I wasn't surprised is unfortunate. As we’ve tried to work with these groups, we've consistently found that the leaders: (1) provide their members with information only from rheumatologists or other conventional M.D.s, (2) discourage group members from looking up information on their own to expand their knowledge of fibromyalgia and unconventional treatment options, and (3) censor information that might help some groups members to recover. In addition, some groups leaders are addicted to and promote the use of narcotics to their group members and discourage the members from considering other treatment options. We’re soon going to have more information on drlowe.com about support groups. We’ll provide information on how to avoid groups that are obstacles to getting well, and how to find an helpful group. A support group should discuss all points of view, encourage members to look up information to expand their knowledge, encourage members to be in charge of their own health care, and not censor information the groups' affiliated physicians don't want members to have. When I was ill with fibromyalgia, I didn’t get support from a group. I mostly went about getting well on my own. I learned everything I could on how metabolic rehabilitation works. Dr. Lowe gave me some information by e-mail, but he mainly gave me the confidence I needed to proceed with my self-directed recovery. Although I can’t recommend a local group that will truly help you, you don't need to wing it. From attending our presentations this past weekend, you’re already knowledgeable about metabolic rehabilitation, so you know what you need in the way of proper treatment. What I did at this point (after learning about metabolic rehab), was to adopt a wholesome diet, take nutritional supplements, and exercise to tolerance. Possibly more important, however, I changed how I related to a new doctor. I decided that I was a healthcare consumer looking for a doctor to hire. Then, I went out to find a doctor who would work with me as a team, and who would treat my fibromyalgia symptoms (which are the same as hypothyroid symptoms) and not my lab test results. The next important thing was to work with my doctor so that I got the proper type and dose of thyroid hormone. Share your knowledge with the doctors you consult, and you’ll quickly learn which ones won’t work with you as a team, and the few good ones who will. July
13, 2002
Vicky: I wasn’t able to exercise much before metabolic rehab. When I did exercise, I experienced much pain and fatigue. When I first started metabolic rehab I was able to walk only half a block. That was a great feat for me. I gradually increased my distance as I tolerated it and was careful not to overdo. I did experience some muscle soreness, but it was normal soreness one gets from exercising and not the abnormal pain I experienced before treatment. To help with the soreness I increased my water and vitamin C intake, and I stretched before and after exercise. Massage and chiropractic treatment were especially helpful in decreasing my pain. You asked if my recovery was progressive or happened all at once after reaching my maximum dose of thyroid meds. Four months after beginning metabolic rehab, I reached my maximum dose. At that time, on a scale of 1-to-10 ("1" being least physically active, and "10" being most physically active), my activity level was 7. Three months later, and on the same dose, my activity level reached 10. My dose was the same as at four months, but at seven months, my ability to be physically active had increased. So my improvement was progressive. I hope this answers your question.
July 11, 2002 Vicky: My story is similar to yours. Years ago, I was also treated with Synthroid, and the T4 also lowered my TSH level into the normal lab range. I was told that my continuing symptoms weren’t thyroid related and instead they were fibromyalgia. I find it a breach of faith that physicians claim to not know what fibromyalgia is, to trust only in an inadequate blood test, and to completely ignore the patient’s symptoms when they are consistent with hypothyroidism or thyroid hormone resistance. Physicians also ignore the successful treatment, metabolic rehab, that enables some 85% of patients to fully recover, as I did. I call all this a breach of faith because many physicians know of Dr. Lowe's protocol and choose not to use it. As a result, their patients continue to be ill despite using toxic drugs that don't work. When one more TSH test came back in the normal range, I discussed metabolic rehab with my M.D. of eight years. He told me that if I used T3, "You’ll have a heart attack and die!" I then went to a new M.D. He agreed to let me try metabolic rehab on the ground that at least it wouldn’t hurt me. Not only did it not hurt me, it enabled me to get well. I didn't go to Oklahoma for treatment, but Dr. Lowe played a major part in educating me so that I could be treated properly. It’s unfortunate you’ve had to endure years of suffering. If you can't get the proper treatment, I highly recommend that you become a patient of Dr. Honeyman's and Dr. Lowe’s at the Center for Metabolic Health in Boulder, Colorado. April 13, 2002 The Lord seems to continue to guide me in the way of hormonal connections. I’m not familiar with Dr. John Lowe, but I’ve found your website, drlowe.com, quite interesting. Did you use his book, or did you go to see him in person? Any information you can offer will be most helpful. Thanks! Vicky: The Lord definitely guided me to Dr. Lowe's work. There was a lot of opposition when I sought help to use metabolic rehabilitation. My doctor told me I’d have a heart attack and die if I followed through with using the thyroid hormone T3. I then decided to find out as much about it as I could, so I did use Dr. Lowe's book The Metabolic Treatment of Fibromyalgia. I found it to be, to this day, the best resource in my personal library. After communicating with Dr. Lowe, I found a doctor who would prescribe Cytomel, a brand of T3. But I started with Armour Thyroid. I got some dramatic improvements with it, but I still felt there could be more, so the doctor added Cytomel. All of my symptoms then went away. I’m still taking Armour and Cytomel in the same dosages. It wasn't just the thyroid hormone, though, that got me well. A diet of whole natural foods, the suggested nutritional supplements, and exercise to tolerance were major parts of my recovery. I pray this information helps you to find a road to recovery. I’ll be glad to answer any more questions you may have. April
12, 2002 Luckily, I hit upon the connection between fibromyalgia and an under-active thyroid. I hit upon this fairly early in my illness and have been taking Armour Thyroid for about five months. I’m now on three grains per day, having just gone up by ½ grain. I take the Armour first thing in the morning. Since starting Armour, some of my symptoms have improved. My skin is less dry, I’m not as cold, I have more mental clarity and less pain. I also feel lighter and have less tiredness. My tiredness, however, is only a little better, and on some days, I feel very fatigued. My muscle aches are better but definitely still there. I take the recommended nutritional supplements and regularly walk to tolerance. Also, as I have a 3-year old daughter, I get a fair amount of exercise caring for her. Am I being impatient? I just feel that I should improve more, as I still feel very far from normal. Do you have any ideas on why I may not be progressing quickly. I’m seeing a fantastic doctor here in England, but he’s a bit concerned that I'm not improving quickly and slightly baffled about what to do next. Any help would be very much appreciated. Vicky: I’m very glad you find our web site informative. I started metabolic rehabilitation by taking Armour. Like you, my symptoms improved but I still felt that they could improve more. When I discussed this with my doctor, he prescribed Cytomel (T3) to go with the Armour. When I started taking the Cytomel, my symptoms improved dramatically, and this led to my full recovery. Perhaps you should discuss with your doctor a trial of T3 along with the Armour you’re taking. I pray this information helps you. If you have any more questions, I’ll be glad to answer them. I wish you health and wellness. November 21, 2001 Vicky: I’m sorry you experienced so much pain after getting a massage. It’s important for fibromyalgia patients to approach massage therapy cautiously—especially the first and second times, and especially if the patient hasn't taken good care of her health. The massage practitioner should be careful to use gentle techniques to learn how the patient is going to respond to massage. Some patients, such as you, don’t experience pain during the massage, but they experience increased pain afterward. It’s important for practitioners to understand that massage that’s too intense for the fibromyalgia patient can cause a flare up. Because of this, the practitioner should start with gentle techniques, such as craniosacral work. The patient can do some things to prepare for massage sessions that may decrease the chances of a flare up afterward. She should eat nutritious foods and take the proper amounts of nutritional supplements. (Dr. John C. Lowe told me he advises fibromyalgia patients to use at least 2,000 mg of vitamin C each day in divided doses to guard against muscle soreness from massage.) Also, the patient should drink plenty of water the day before, the day of, and the day after the massage. You didn't mention what medications you are on. I've found that some patients will take pain medication before a massage so they can better tolerate deep tissue work. This gives the practitioner an unrealistic boundary for the patient's true pain tolerance and tissue response. Some medications can increase pain sensitivity. To learn whether any medication you're taking increases pain sensitivity, get a list of the medicine's contraindications from your pharmacist. It's important to abstain from taking both prescription and over-the-counter medications for at least two hours before a massage. Massage can cause medications to circulate faster. With some medications, this can cause headaches, nausea, and other symptoms. Be sure to check with your doctor first before abstaining from prescription medications. Massage increases the rate of cellular exchange; it increases the rate at which oxygen and nutrients enter cells, and the rate at which wastes leave cells. The more rapid elimination of wastes from our cells can increase the amount of toxins moving through the body. This can contribute to discomfort after massage. Drinking large amounts of water hastens the elimination of the toxins from the body, and this decreases the chances of nausea, pain, headaches, and dizziness after the massage. Keep in mind that unless you get proper metabolic treatment for your fibromyalgia, you’ll continue to be prone to flare ups after massage that’s too intense for you. Until you can get proper metabolic treatment, ask your massage practitioner to use techniques that are gentle enough to avoid flare ups. August 8, 2001 The one question my doctor would like answered is how many patients are currently on the protocol and approximately how many have been helped in some way. I would greatly appreciate any input you could give me on the question of how many patients are currently being helped by Dr. Lowe's and Dr. Honeyman’s protocol. Vicky: On the web page titled "Overview of Fibromyalgia," you’ll find some statistics on the outcome of metabolic rehab. On that page, you’ll find a link to a paper published in a French medical journal. In the paper, Dr. Lowe and Dr. Honeyman explain the percentage of fibromyalgia patients who have thyroid diseases and the percentages who improve or recover. Be sure to read the paper. If you haven’t found a doctor yet who’ll help you with Cytomel, put a note book together, in an organized manner (as I explain on another page). Include the following pages in your notebook: "Overview of Fibromyalgia," "Fibromyalgia and Thyroid Disease," "What We Know About Fibromyalgia," and "But That's Only a Theory." Leave the notebook for your doctor to read. There are doctors out there who’ll work with you. But you’re right—it's not easy to find them sometimes. If you don't feel that your doctor and you can work as a team, you may need to take the time to find a doctor who will work with you. Don't ever give up! July 6, 2001 Vicky: You may not need to travel to find a doctor. What I did to get a doctor to cooperate was to first learn about metabolic rehab and how it relates to fibromyalgia. I organized a notebook with pertinent information from Dr. Lowe's and Mary Shomon's web sites. I took the notebook to a doctor and was prepared to leave it with him. The first doctor I took the information to said that if I took Cytomel, I’d have a heart attack and die. The second doctor I took the information and agreed to prescribe Cytomel. He said it won't hurt me to try it. If this doctor said no, I would have kept searching until I found one who would have cooperated. The bottom line is that, based on the information in my notebook, he treated me based on my hypothyroid-like symptoms rather than my thyroid test results. As a result, I got well. My current doctor said he hasn't had success with other patients using Cytomel. I asked him if he has advised them to take nutritional supplements, weaned them off other prescription drugs, and helped them employ an exercise program. He said no, he had just prescribed Cytomel. But all these treatment methods are required if metabolic rehab is to be successful. For your treatment to be successful, you’ll also have to take control of your own health. You will need to work with your doctor as a team player but let him or her dictate what is best for you. The better informed you are, of course, the better you’ll be as a player on the team. Keep in touch, and if you have trouble finding a cooperative doctor, I’ll help you the best I can.
June 23, 2001 Vicky: It took me about a week to start noticing improvement. Within four months of starting metabolic rehab, I was able to go on all-day ski trips. For years before, I hadn’t been able to do things such as that. Within six months of starting treatment, all my symptoms were gone. I take 60 mg (one grain) of Armour Thyroid and 20 mcg of Cytomel. The effective and safe dose isn’t the same for everyone. Some people need much more than others. I want to share with you that merely taking Armour and Cytomel isn't what got me well. I was also diligent at taking my nutritional supplements, improving my diet, and exercising to tolerance. Had I not been diligent in these ways, I probably wouldn’t have gotten well. I also used charts and graphs to record my improvement. Seeing my improvement and eventual recovery on the graphs helped a lot. Eventually, the charts and graphs may be available on drlowe.com. Meanwhile, if you want blank copies of them, I can e-mail them to you. I wish you well. May 1, 2001 Vicky: I didn't go to Dr. Lowe for treatment. He played a major part in educating me, however, so that I could find treatment here in Washington. He and I first communicated by e-mail and later by telephone. With what I learned from our communications, I was able to recover, but only because I overcome the major obstacle to being treated properly—finding a doctor who would prescribe a thyroid hormone preparation containing enough T3. Dr. Lowe's studies show that to improve or recover, the thyroid hormone dose must be adjusted by the patient’s tissue responses to the hormone. Because of this requirement, thyroid function tests, such as the TSH, have been a hindrance to patients getting well. The reason is this: A dose of thyroid hormone that’s large enough to eliminate symptoms of fibromyalgia is likely to produce thyroid test results that are considered typical of hyperthyroidism. The TSH level, for example, will be low by lab standards. Many doctors mistakenly interpret these lab results to mean the patient has hyperthyroidism. But despite low TSH levels, most patients aren't over-stimulated with these doses. Instead, they are well. You asked how long it took for me to start feeling well again. I started improving right away. It seemed like every day my health improved. At four months, I was able to ski. But it took about six months before I fully recovered. You also asked if it was hard to change my lifestyle. It was difficult, as it is for most anyone. To make is as easier, I established priorities and set goals to achieve. I strongly recommend this approach for other patients. The priorities I started with were diet change and nutritional supplements. When I began metabolic rehab, I was already eating a whole food diet and avoiding sugar, and I was taking nutritional supplements. Also, I was abstaining from prescription drugs usually prescribed for fibromyalgia. With the addition of a high enough dose of thyroid hormone and exercise, I as able to recover. Making dietary changes, taking nutritional supplements, and sticking with an exercise routine, of course, can be demanding. To help, I strongly recommend that patients make these changes priorities, and to strive for the goal of making these a part of their new lifestyle. April
13, 2001 Vicky: Studies have shown that most fibromyalgia patients don’t benefit much from T4 alone. The studies show that a thyroid hormone preparation with a high enough amount of T3 usually does work. Most patients improve or recover only when their thyroid hormone dosage is adjusted according to their tissue responses to the hormone. Thyroid function tests such as the TSH have been a real hindrance in this respect. The reason is that when the thyroid hormone dose is large enough to eliminate symptoms of fibromyalgia, the TSH level is low, and many doctors mistakenly interpret this as hyperthyroidism. Despite the low TSH level, most patients aren’t over-stimulated. Instead, they are well. Some doctors, such as yours, argue the dangers of T3 therapy and won't prescribe it. This is outrageous because the side effects of T3 therapy are simply "No adverse side effects." In contrast, the side effects of the standard prescription drugs, such as those you mentioned, are so dangerous that patients need to watch for kidney, liver, and other internal organ damage, seizures, tremors, abnormal heart rhythm, chemical imbalances, nausea, addiction, and more.
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