Edith is back with Part II of naturopathic treatments that have helped her with fibromyalgia. See 17 Years: A Fibromyalgia Naturopathic Story – Part I
The Miracle of Amino Acid Therapy
“Amino acid therapy has been the most beneficial treatment I’ve received in the past 20 years living with FM”
Amino acids are the building blocks of protein. The body needs them to make protein structures that build and maintain the tissue in our bodies. Some amino acids act as neurotransmitters, which is the basis of my successful treatment.
Some, our bodies make, and others called essential amino acids, must come from the food we eat. Now, if you can’t digest properly, especially protein, that can cause you problems, which is a big issue for me. My ND when he first saw me, knew I had digestive problems because of the two sores I had on the corners of my mouth. He immediately put me on a quality digestive enzyme Panplex 2 Phase.
As the years went on and as he reviewed lab tests, I was told to increase my enzymes and then to eat more protein. Then six years ago, he decided that I should have a complete test review of my amino acid status. It consisted of a 24 hour urine collection, that was couriered to a lab. in the USA called Doctor’s Data, Inc.
The extensive report that came back showed that most of my amino acid were rock bottom. The report also included the exact amounts of those amino acids that I needed in milligrams, to be included in my prescription. My ND. got the prescription filled at a compounding pharmacy here in Canada.
The prescription arrived in plastic containers, in the form of white powder. I was to take 1 heaping teaspoon 2 times a day, morning and evening. My ND. also told me to take a B6 tablet with each dose, in the form of P5P, pyridoxal 5 phosphate. Soon, I was sleeping soundly again, and it was like someone had turned on the light switch in my brain. I felt normal again.
Two years later, my ND. wanted me off my amino acid prescription for a month for retesting to adjust the dose. I could not believe how much and how fast I deteriorated. I was okay the second day, but it was all downhill from then on. After the first week I was completely disoriented. I could no longer even read a book and also had to stay away from the computer because It was affecting my own brain waves. I ended up mostly in bed, so it was an extremely long month!
When the test was completed, I was allowed to resume taking my old amino acid prescription until the new one arrived. Within a week, I had regained 80% of my neurological function and life was good again! That short term memory problem that confounds all of us that have FM and ME/CFS, did not improve however. I’m sure some of that problem is due to sleep and pain meds. Amino acid therapy also had no effect on my pain level, but other therapies had helped, which I will cover later. I can always lower my pain level, but how do you get brain function back? So, I’m extremely happy with the results I did get, on my amino acid prescription. 80% is a true miracle.
Cysteine is an amino acid some people with ME/CFS and FM may be low in
I googled “amino acid therapy for fibromyalgia” and later for ME/CFS, and then for Alzheimer’s, and got all kinds of information. Alzheimer’s is a big problem on my mother’s side of the family, but my Dad kept all his faculties till the end. There’s hope, and I’m keeping my finger’s crossed. I did ask my ND. if he was using amino acid therapy for his ME/CFS and Alzheimer’s patients. He said “yes, but it doesn’t help everyone, but for those it did help, their benefits are similar to yours.”
I bought a book on amino acids, and I was left wondering why we are using drugs with serious side effects to treat depression and anxiety etc. when we can be using this natural therapy. It’s worth the read, as it warns that taking too much of a particular amino acid can also have consequences, which tells me to always get tested first.
The amino acid test cost me $400 two years ago, and my particular prescription is about $850 for 6 months, which is what I paid for Celebrex. (Celebrex is now generic, and I paid just $140, the last time I bought it. If you are in the US, I’m sure the test is a lot less expensive)
Amino acid therapy has been the most beneficial treatment I’ve received in the past 20 years living with FM, however I needed all the rest of the therapies to have the quality of life I have today.
Food Allergies and NAET
Since developing fibromyalgia, food allergies have become a big problem, for me. Leaky gut is probably the reason, where food particles cross into the blood stream causing the immune system to see them as invaders and going on the attack. Symptoms can be quite severe, such as irritable bowel and neurological problems, not to mention sleep disruptions. The worst ones for me were dairy and sugar, which my Naturopath doctor took me off of after testing my blood. The dairy was causing my colon to spasm and the sugar was burning my stomach. He told me to eliminate them from my diet and I had immediate relief. As time went on, though, I kept developing more and more food allergies, to the point where I could only eat meat and vegetables, which is all right but awfully boring.
Food allergies were a problem
In the past, at some point, I read about a new way to eliminate allergies of all kinds and the name of the process is called NAET. It was developed by an M.D. who is also a chiropracter and has a Phd in accupuncture. Her name is Devi Nambudripads (www.naet.com).
At that time, I had looked on the Internet to see if I could find a NAET practitioner in my area with no luck. A few years later, an old friend who also has FM happened to mention that she had been seeing a doctor of Chinese Medicine who was clearing her of allergies using NAET. This doctor was only45 minutes away, so it didn’t take me long to phone for an appointment. When I did meet her, she told me that when she had first come from China, she had worked for my Naturopath Doctor, and had had learned so many things from him. He was not aware that she was doing NAET.
NAET combines kinesiology (muscle strength testing) chiropractics and accupuncture, as follows
First Visit: Testing
- As I lie on her examination table, she gives me a tiny tube that holds the substance to be tested and tells me to hold it in the palm of my hand forming a fist.
- I’m told to raise my right arm and she applies pressure to my wrist. If I can hold strong,it’s a sign that I am not allergic to that particular substance. If she can easily overpower my arm, that means I’m allergic to it. I’ve also had NAET done by an accupuncturist that uses thumb touching a finger, forming a circle, and he tries to pry them apart with one of his fingers. I like that method better, as I feel more in control of my own strength. Because of fatigue with my illness, it doesn’t take long for a raised arm to become tired. In any case, both methods work quite well. You are then tested, one tube at a time, for the most common allergents. That takes up the whole time of the first visit.
Second Visit: the Treatment
- While holding the small tube of substance you are allergic to in your fist, I’m asked to sit down. The practitioner runs a clicker type of chiropractor instrument up and down both sides of my spine several times.
- I then lie down on my back, still holding the tube and she puts 3 or 4 accupuncture needles on both sides of my legs. I remain like this for 20 minutes, just relaxing.
- When the 20 minutes are up the practitioner comes back into the room and removes the needles.
She tells me I can go home, but I’m to stay far away from the allergen I was just treated for. Now that takes a bit of planning ahead. I’m told ahead what allergy will be cleared, so I make sure it’s not anywhere that I can come in contact with it when I come home. 25 hours later, I can eat that food again, or I can touch that weed or whatever again, and have no reaction. That’s it in a big nutshell.
I get NAET treatments for the foods I can’t live without and just eliminate the other ones from my diet. I’ve substituted dairy and soy for rice cheese, and I found a restaurant that will make me a pizza with it. Life with FM without the allergies has become a lot more pleasant.
In his book “The Fatigue and Fibromyagia Solution”, Dr. Jacob Teitelbaum, MD., says: “Many food allergies settle down after you provide adrenal support and treat candida”.
Arthritis and Spinal Problems
I’ve had spinal problems for many years, aggravated by early degenerative arthritis. At the age of 35, I had my first sign of what was to come. My husband and I owned a general store and one day I lifted a heavy box. The next day I could not get out of bed. I phoned my M.D. and explained to him that it was impossible for me to even come to his office. He was kind enough to call the pharmacy for pain medication for me and I was to come in as soon as I was able. When I did, he told me he wanted me in bed for a month.
Edith’s degenerative arthritis has lead her to see out many alternative treatments for pain
Three months later I was still at home – barely able to get around. I got so fed up one day, that I just decided to go back to the store and catch up on some things. It was fall, and I needed to organize the footwear storage area to make room for the winter boots. I spent the week bending down and then up, down and up, moving stock and by the end of the week all my back pain had disappeared.
After that experience, I realized that it’s okay to rest for a short while, but some targeted exercise is necessary to recover. Spend too much time in bed and your muscles weaken terribly.
I was good for a couple of years, but it happened again.
Chiropracter
This time I decided to see a chiropractor. I had been aware of chiropractors but was afraid they might hurt me. I was not about to go through another 3 months in agony, though, so I got my courage up and made an appointment. After a few adjustments I was as good as new and the treatments were not painful at all. That was the beginning of my long association with chiropractors to this day. They have gotten me through some pretty rough times. I did not tell my MD. way back then as they were wary of chiropractors.
I was born with a slightly shorter right leg which has caused enormous spinal strain, and no doubt, a good candidate for fibromyalgia. A specialist had also diagnosed me with Scoliosis, a curvature of the spine. If my life’s work was to learn everything about pain, I was well on my way to a PHD.
Neural Cranial Restructuring
I happened to mention to my Naturopath Doctor one day that my spine was curving worse than ever. I knew he was also a chiropractor, but I already had my own at home, so I had never asked him for an adjustment before. He told me that he had noticed that my head was sitting too much forward and not aligned properly over my spine. He told me that NCR (Neural Cranial Restructuring) could be of great help. Well the “little chicken” in me, OKAY, the “Big Chicken” in me said No-o-o’, but then I thought: This man has done nothing but good things for me so why not give it a try. It ended up working like a charm and not painful at all. There were 4 treatments, 4 days in a row. (It’s hard for me to explain the procedure. Please go to www.ncrdoctors.com for an accurate account.)
I want to tell you, though, how I knew the treatment worked. When I arrived back home after the first visit, I went up to the kitchen counter to get a glass of water and was immediately struck by the thought that there was something different here. What had happened was that after my NCR treatment my spine had straightened up and I had grown an inch or more.
When I went to the bedroom, I could have sworn that my dresser had shrunk. It was amazing to realize how our brains are always keeping track of our position in relation to everything else, even when we are not consciously aware of it. When I reported this to my doctor, he smiled and said that he’s heard of many similar funny stories from his other patients who have had NCR.
NCR gave me better mobility and relieved a lot of my spinal and referred pain. This is only one example of how my Naturopath Doctor is always staying on the cutting edge of his profession. To think, I only came to see him mainly for vitamin advice!
Immunity
Around the age of 11, I broke out in a body wide rash that looked similar to the measles. I was kept at home for a week till it disappeared. A day or two later, while playing baseball, the rash was back with a vengeance. The doctor could not figure out what it was, as I had already had the measles a few years back. He put me on some type of allergy pills, and I remember being on them for a good while. The rash did disappear, but after that, I was covered in itchy hives whenever I went swimming or entered a skating rink, and that went on to the age of 30. My immune system then settled down for more than 20 years.
My Dad was the caretaker at the court house across the street from where we lived and I remember seeing him wearing a mask spraying the weeds on that whole block of lawn. Us kids were often on that grass passing along messages to him or just watching what he was doing. I also can recall spraying flies in our house with a long tube type sprayer filled with DDT. and I can still picture the cloudy fumes. The instructions were to stay outside for 20 minutes, but the smell was still strong when we re-entered.
DDT has been banned in Canada for many years now, after people realized why there were so many birds dying. In spite of my mother having immune system problems, I can’t help but wonder what role these deadly chemicals have on my present health. Four years ago I was using a new furniture polish and forgot to check the label. It caused me to lose all my energy for a whole month and I had only slits for eyes.
The last time I got the flu shot, quite a few years ago, My FM pain level went “SKY HIGH” for ten days and then returned to its norm. My ND. said that it damaged my immune system but that it would come back. From then on he gave me the flu shot in the form of tiny beads, from small vials which I put under my tongue to melt once a week. It’s called influenzum by the Boiron company, and I get the new doses in the Fall.
Meyers cocktails have been helpful at times
Every 2 years, my ND. likes to check my heavy metal status, through a hair analysis. If I need to drop my levels, he has me take 5 to 6 drops of a product called NDF by Bioray, once a day for a period of time. My aluminum levels were high at one point, so he told me to use a crystal deodorant from a health food store instead of the regular one I was using. I had my doubts, but It works just fine and in no time my aluminum level dropped to normal.
On several occasions, my ND has given me IV infusions of Meyer’s Cocktails which delivers various nutrients directly into the cells. That’s especially helpful for people like me that have trouble digesting our food. My energy would surge after a series of these IVs and they also helped with my severe leg cramps. A few years back he had also given me IVs to help replenish my glutathione levels to be able to detoxify. I got into interesting conversations with some of his other patients while we were having our IVs and I was absolutely amazed at some of the other treatments he was also giving them, and the many benefits they were receiving.
During my years of seeing a Naturopath Doctor, I hadn’t stopped my searching for anything else that might be out there that could help with this complicated illness. Here are a few gems that I found.
Other Naturopathic Treatments For Pain Relief
Infrared Sauna For Muscle Spasms
I have a friend that was selling Far Infrared Domes and she lent me hers for a few days. After that I’ve never wanted to be without this wonderful deep heat for all my sore and spasmodic muscles. It’s 14 inches wide and has wheels for pulling the dome over your body. I like to use it in bed. You can set the timer for 15 to 60 minutes. (Far Infrared Dome are available from www.hteamericas.com. Click on your Country’s flag and search products).
If it’s a bit too warm in the bedroom, I direct a fan my way. I drink a glass of water before and after to keep hydrated and to detox. If there’s an HTE representative in your area, you may be able to try it before buying and the price is the same. This dome releases muscle spasms and I find it works better than massage therapy. It’s called the “The Hot House”.
Revitive Foot Massager For Foot Cramps
The foot massager looks a lot like a scale to weigh yourself. Even though I’m on plenty of magnesium, the minute I would lie down at night in bed the leg spasms or cramps would start. Now, all I do is sit down and put my bare feet on the massager for 30 minutes before bed and I’m not bothered by cramps all night.
The foot massager also increased my circulation and my ankles and feet no longer swell, even during the day. Slowly increase the mid dial till you can feel the electrical impulses go up your leg at a comfortable rate. This machine has been approved by the FDA and Health Canada.
You can find it at a larger pharmacy or online www.revitive.ca for Canada or www.usrevitive.com.for the US.
Laser Treatments
Laser treatments helped with pain
While waiting for a hip replacement, the referred pain to the inside of my leg was extremely difficult to stand as I could not take more pain medication besides the one for FM.
Someone had alerted me to an article about laser treatments and it was done by a physiotherapist. I phoned my Provincial Association of Physiotherapists to see if any of their members did laser and they gave me the name of a new clinic that did. I ended up having 10 treatments that were very helpful and absolutely painless.
I would lay on my good side and the therapist would put a rubber type pad on my bad hip. I stayed like this for 20 to 30 minutes? He then came in and put protective glasses on himself and me as well and did more direct targeted work on my hip. Much of the inflammation in my hip was reduced and in turn, the referred pain to the inside of my leg largely subsided.
Dr. Newton’s glucosamine cream is also exceptional for muscle pain and is odorless if that is important to you www.drnewtons.com It’s fairly expensive, but they do offer specials on their website and E-Mails.
The Power of Distraction For Pain
Life was pretty grim, the first few years with fibromyalgia. When times were particularly bad, I’d phone my son, who lives in the same town, and asked him to bring my young grandchildren over for a visit. The power of distraction is incredible. I recently heard of a scientific study on trying to harness that power for people like us who live day in and day out with chronic pain. It sure would be nice to throw out all those pain pills.
Physiotherapy and Exercise
When I was halfway through writing this series, I started having severe lower back and hip pain because of sitting too long. Even though I have a terrible spine, I decided to go on the treadmill for just 5 minutes a day. What a difference, I needed to move to get those endorphins to do their job and give me some pain relief. I always feel better when I’m more active. It also gives my brain a boost. I also don’t have to turn up the dial as much when I use the Revitive foot massager, which tells me that my circulation has improved (see below). Speaking of moving more, Physiotherapists are great for teaching stretches, plus floor and water exercises.
Others
D-Ribose for Energy
I first heard of this supplement in Dr. Jacob Teitelbaum’s book “From Fatigued to Fantastic” He suggested taking 1 scoop 3 times a day to start and then go to 1 scoop 2 times a day after that if it works for you. Before using D-ribose, my legs felt like they were bound together by a wide rubber band, making it very difficult to walk. Within 2 weeks of taking d-ribose, I was walking normal again. D-ribose increases cellular energy.
The best price I’ve found is at www.endfatigue.com. Click on the products and click supplements link. The brand name is SHINE, towards the end of the list. It’s only $19.50 or $16.00 US auto ship. Amazing, as most cost between $40 & $50 US. You will find most of the supplements you might need on this website. Dr. T gives all his royalty money to charity.
Sleep
The number one most helpful thing I can pass on to everyone with FM & ME/CFS is not to eat before bed, as it absolutely destroys your deep sleep. If I did, I paid a big price the next day, as my brain function was severely affected, and I often had to go back to bed. If I also eat any food I’m sensitive to, goodbye deep sleep as well.
Eczema
999 cream works great for eczema when used on a regular basis. I paid $5. a tube on Ebay. I also like Neosporin Ezcema Essentials daily moisturizing cream (steroid-free). Buy at a pharmacy.
Saving Money on Medications and Supplements
I’ve spent a small fortune keeping myself well, so it has paid off big time to check around for best prices. For best price on prescription meds. always ask your doctor to prescribe you the generic form, if available. Here’s an example: I was paying $850 for a six month supply of Celebrex. The patent on this drug expired 6 months ago and the price now is just $140 for the same 6 months.
The generic name is Celecoxib. You can go on google and type in the name of the drug and add price check to view on line and retail pharmacy prices. Costco often has the best price, and you don’t need a membership card to buy from their pharmacy.
In the USA my favorite company is www.totalhealthdiscountvitamins.com In Canada I like www.canadian vitaminshop.com, www.healthpalace.ca and www.vitasave.ca. Local health food stores have flyer sales, and some have special sale days or membership discounts. Many health food companies give special discounts on American or Canadian holidays, so check their websites on those days. You may also save shipping costs by checking their minimum order requirements.
How Am I Doing Today?
- Sleepwise – I usually get 8 hours of quality sleep every night (minus a couple of “pit stops). I wake up a bit groggy from the sleep meds, but that soon clears up and I am usually looking at a good day ahead.
- Brainwise – I’m pretty close to normal in sharpness and focus. I recently read about a thyroid supplement that claims to change T4 into T3 and it’s from a company that my ND. says is excellent and to go ahead and add it to the other one I’m on. I was a bit shaky on it the first week, but now it’s working great and my energy and brain power got an extra boost. I’m still doing some “word searching” but my husband, who is well, is doing the same thing too, so that’s pretty normal for our age.
- Pain Level – Well controlled by my pain med. and magnesium citrate, a few minutes on the treadmill every day and trying to be somewhat active, not to sit around a little too much.
- Activity Level – I’m able to do my house work every day, but I do hire someone to do the more difficult things. It’s not that I don’t have the energy to do it, but the harder scrubbing motions can spasm my muscles really badly. My husband had to take over cooking the dinner meal, 20 years ago, and he still loves doing it, bless his soul (how more lucky can I get). I’m the “cleaner upper” after, though. I’m able to drive to the closest city to do a bit of shopping, eating only protein to be sure I don’t run out of energy, once and awhile. I’m a current affairs person and like to keep in touch with Canadian, American and World news. Since I ended up on Health Rising, about 6 months ago, I also check what’s new there every day as well.
- Doctors – I usually see my MD. once a year and my ND. twice a year.
- Most Important For Me Now – To “stick to the program” given to me by my Naturopath Doctor, and I find that easy to do, because who wants to get up in the morning feeling sick!
I ended up on Health Rising’s website by chance about 6 months ago and have been truly amazed at all the current research and other information Cort has made available to us. Thank you to the lady who asked the question, ‘Why is there nothing on natural health?” It got me thinking why don’t I do it as I’m sitting here with 17 years of experience with a Naturopath Doctor and all this information has been accumulating in my head for years.
How can I even begin to thank my amazing Naturopath Doctor? I hate to think where I’d be today, in bed for sure, if here at all, since I was suffering from vitamin deficiencies 17 years ago already.
I owe him my life as he gave me the same care that a specialist in FM & ME/CFS could have provided. Naturopath Doctors are experts at bringing your body back into a healthy balance, by going to the root and correcting each problem, without using just symptom relief. I did not get better overnight, but I slowly improved with each treatment I received from this exceptional Naturopath doctor.
I know that not everyone is in the position to consult with a Naturopath Doctor, but I’m hoping that the information in my story can at least help many in knowing what questions to ask their own doctors and insisting on treatments for the problem.
God bless you all on your journey back to wellness.
- See Part I of Edith’s blog here: 17 Years: A Fibromyalgia Naturopathic Story – Part I
Health Rising is not associated with any of the products mentioned in this blog
I am sorry to be this way but went this way with “Doctor” in 1990’s. He was also a Tietlebaum groupie. “From Fatigue to Fantastic!” I had a ton of tests. He was sure it was Mercury and Yeast. When this HUMONGOUS BILL came in $800 wasn’t covered by insurance. Only HIS Special vitamins would do because all his tests turned up Arsenic in high levels. He had special Chelation Vitamins that would cleanse my blood. I know now there is an extreme medical procedure involved. Anyways more tests for food allergies. B12 shots weekly $40. I later went a real Dr prescribed me a bottle for hubby to give shots, 30 shots per bottle $25. Anyways, $2000 plus and 90 days later with zip result. A chiropractor using a stereo static remover on me. I knew my Drummer hubby has one so tapes played clearer, but that records, last fricking straw. I use vitamins. I watch research. I believe there is a body brain connection because when I get thoroughly raging pi$$ed I feel no pain. When I come down I can’t move for days without moaning inside. That’s me my own experience as a fibromyalgia snowflake. The Snowflake Author I can accept the amino acids. What scares the $#!t out of me is this movement towards having Fibromyalgia Specialist with 6 weeks of training from my Nemesis TIETALBAUM! We are all not the same! One size fits all will never fit us, maybe 6, but not one too many variables.
I’m glad you’ve gotten relief from your many ailments, Edith, but I stand with Deborah on Teitelbaum’s not passing the quack test…lots of expensive arcane blood tests? yup. supplements he can provide? yup. You’ve had a lot of treatments helpful to you that I would not try if paid to. I have had “Elite CBD Compound” 100 mg transdermal salve from Mary’s Nutritionals (no financial interest there) for several months and it is a salve that does work for my fibro tendon and muscle pain, not well for the awful “neuropathic” foot pain, though, for which I’ve started on 50 mg Tramadol, forgot to try acetaminophen with it as suggested here. The neuro pains are tough to deal with, for me.
Steve, I gather from your comment, that you’re having an extremely difficult time. I wish I could help you more, but the only thing I know for sure is my own story and where I found the help. As you do your own research, try to keep an open mind as you may be discounting a lot of things that may be of great help to you. I still stick by Dr. Jacob Teitelbaum MD.100%. I’ve researched dozens of books on FM & ME/CFS throughout the years and in my opinion his are still the most helpful. As I was just mentioning to Debra, you may want to consider a FM support group in your area. I got a lot of help there for myself. I’m rooting for you!
Dr. Teitelbaum’s protocols work very well for some people – and they don’t work for others. I imagine the same is true for CBD; marijuana compounds work very well for some people and they don’t for others. That seems to be par for the course for any treatment. I wouldn’t expect anything different honestly.
Debra, I’m so sorry that you’re not getting the help you need and that you’re suffering so much. My heart goes out to you. May I suggest finding a FM support group in your area and joining. I know of some groups that provide a list of medical professionals that their members have found very helpful. You will also have access to their library for your own research, and also valuable information that their other members can share with you. That’s where I started years ago. Health Rising also keeps us informed on the newest treatments such as low dose naltrexone, antivirals etc… Hope this information will be of help to you. Don’t give up, there is help out there, as you can see from my story.
If there’s one thing I learned since ME then it’s to not judge a treatment by its explanation, I did a NAET-type of thing but with drops which is sort of resetting every formerly infected with EBV, Lyme and a few others cell in my body, of which there are a few so it’s taking ages..
Hi Soph, If you go to Dr. Nambudripad’s website, http://www.naet.com and click on For Patients and then What is Naet, you will see an article: Allergy Elimination Techniques. Read to the very bottom. It sounds like some people are working under the guise of a false Naet protocol. It’s always wise to check out who you’re dealing with. My Naet treatments were done by a Dr. of Chinese Medicine and by an acupuncturist who actually studied under Dr. Nambudripad. I don’t have the knowledge or experience on the treatment you are getting, to even offer a opinion. I’ve got to give you a lot of credit, though, for going out there to find what may help, since we had pretty well been discounted by the “powers that be” up to now. As you’re on Health Rising, you can see, that things are starting to change at last and there are promising treatments being mentioned on this great website. Wishing you the best! Edith
from experience I know that if something is positively mentioned by a few reasonable people then it probably isn’t quackery, but if I go to the site and the first thing I see is that autism is cured then I don’t go “yay!” but roll my eyes a little at them, first cure around 3/4th of all autists and you won’t even have to put it on your own site, believe me.. same with mine, I’m scared to even put the link where it can’t be erased so click on my profile pic if you want to find out anddontlaughatme 😉
wishing you the best back!
sophie
Thanks Phie, for joining in on the conversation. As you can see from my story there are many new discoveries being made on the natural side of medicine that most people have not heard about. It’s very important that we not do the same as what the CDC & NIH did to us who suffer from FM & MECFS. We must keep an open mind because we never know when or from where the next big cure for any illness will come from.
of course not your explanation(s) Edith, which is/are great ;D just in general
Hi Edith, thanks for taking the time to pass on your experiences and how different treatments have/haven’t worked for you. It was an interesting read and I’m sure lots of people will find it very useful.
Thanks Lyn, I really appreciate your support!
I for one think the amino acid results are fascinating. I don’t hear about that kind of treatment a lot. Whitney Dafoe’s amino acids are apparently way, way off. I think it’s one of the few tests that have had really startling results. It’ll be interesting to see how that goes.
Following this blog, I am fascinated by the differing paths to improvement that have been discovered by different people.
The way I have got improvement, includes almost none of the things Edith regards as major contributors to her improvement.
To recap, what has worked for me (in improving a long established fibro condition):
– Low carb diet and weight loss (I was seriously overweight)
– Paced low intensity (fat burning) exercise, lots of it, regularly
– Lots of magnesium
– A routine of muscle stretches in a spa pool daily or nearly daily
– Qi Gong massage from a practitioner who understands fibro
Possibly an important factor is having a low stress, enjoyable occupation – I do piano tuning. This helped me get through the last 15 years or so but the major improvements of the last couple of years are due to the protocol I describe above.
In the category “I use this but don’t know how significant it is”: Guaifenesin; D-Ribose; compression sportswear.
The latest thing I have discovered to bring rapid improvement in a frustrating lingering symptom – my leg muscles have continued to be twitchy and tense on waking in the morning and I have to go slowly for a while if I am to avoid a full-on cramp attack. I am not out of risk till after breakfast and a big dose of mag powder. The large magnesium doses I take includes a large (one a day) tablet at bedtime with lots of water (on top of what I take at breakfast and at mid afternoon). This is necessary to avoid being woken with a painful calf muscle cramp attack. This may be a symptom of ongoing detoxification (calcium excretion?) that will eventually clear up, I certainly hope so. But my latest discovery is spray-on magnesium oil – rubbing this into my legs soon after waking rapidly gives me the relaxation and mobility that I used to have to wait a couple of hours for (until after breakfast and magnesium powder). I wish I had known about spray-on magnesium oil a long time ago! A friend in a nearby rural town I stayed overnight with, told me about it, he uses it (he does not have fibro but suffers from cramp attacks too).
Anyway; I wonder whether those of us like Edith and myself and others who have found differing protocols to help (recently Cort blogged about intensive HBOT being a miracle cure) – are we suffering from different conditions that are all classified as fibro; or do we all have the same condition and there are multiple “accidental” ways of achieving improvement? Maybe someone one day will come up with the common factor that really is the crucial thing in the cause and cure of fibro.
It’s a big mystery why some people improve in such different ways. My guess is that there are multiple pathways to FM but that some core end states – as evidenced by the research finding — exist. Perhaps they’re being produced or can be impacted in different ways?
Thanks for passing on the magnesium oil info.
Hi Phil, Thank you for your comment, and so happy for you, that your FM is so well controlled. Our stories illustrate how important it is to do our own research and then try different strategies that may, or may not help us. We can then drop the ones that don’t help and stick with the ones that do. I was very interested in the magnesium oil spray you are using and will try it, especially at night before bed to see if just using it alone can illiminate my nightly muscle spasms. Thanks for that tip! We do have some coping things that are the same, such as D-Ribose which pretty well stops the leg stiffness for me during the day and gives me more energy. I also found that too much carbohydrates does cut my energy. Years ago, I also discovered, that sugar increased my arthritic pain enormously, but I’m off that completely now. Like you, I also do stretching exercises every morning and I also use a lot of magnesium citrate, which greatly loosens my muscles and helps with the pain. As to what may be the one main cause of FM that we have in common, I believe is the genetic defect we carry. As to our varied and different symptoms, I brought to the attention of my Naturopath Doctor, the article on Jarret Younger that was on Health Risings not too long ago. Since my ND. is treating both FM & ME/CFS patients, he agrees with Jarret that our different set of symptoms is due to what kind of noxious messages (neurochemicals) that our microglia is spewing out at us. Thanks again for responding to my article and providing additional coping skills!
Just a comment; you might have missed the point that I do my muscle stretch routine in a hot spa pool. Trying to do muscle stretches just on the floor like a normal person, has always been a nasty experience, the muscles just do not feel like they want to release. Even now with all the improvement I have got, I still get on far better in the spa.
It is not just that the muscles are nicely warmed, it is also that the body weight is supported by water – as you do each stretch, try and find a nice position for your whole body so that you are pretty much just floating. Half the problem with stretching routines, is that while you are stretching one muscle, others are under unnatural load and getting provoked into new tightness and pain!
I also am very aware of POTS type symptoms with certain postures like squatting; and adopting these postures and doing stretches with the weight supported by water, keeps the POTS symptoms less severe. I also believe that stretching and releasing the myofascia is the key to achieving reductions in the POTS symptoms. It has been a long slow process, but I have eventually gained major elasticity in the myofascia in most of the problem spots (eg pecs and armpits, groin area where legs join the body). Again, I only do the myofascia releases in the spa. There is more pain than gain otherwise. I really think I am onto something with this.
Great to hear from you again Phil. Thank you for the additional information you’re giving us. Very interesting and helpful. Your way of doing stretches in a pool is far superior to what I’m doing. I’m about 35 miles from the nearest pool and I’ve never been a pool person. We used to have a pool in our back hard, but removed it when our kids left home. My husband and I never used it and it was so much work keeping it clean. I’ve learned to keep my stretches very light, because like you said, it’s so easy to hurt yourself and end up in worse shape. I just do enough to limber up a bit and it removes a bit of the pain and stiffness. I am so amazed at the length you go to in order to keep yourself well and functional. Though a lot of us are not able to do all you’re doing, you are certainly a role model in courage for all of us. I was just watching the Pan American games final concert in Toronto and it dawned on me that I wished I had asked all the people I was talking to what Country they’re from. So I hope you do so. I hope that’s okay with Cort and Health Rising as they are spreading fast around the world. I’ll miss you all, but I’m sure I will spot you again sometime, giving your comments on other Blogs. Take care all. Edith
I have to concur with the Deborah and Steve about Dr. Teitelbaum. I went to his clinic before he took over completely. They did not take insurance. They required a huge amount of money to get in before I even saw a doctor. The doctor spent most of her time hand-writing prescriptions for vitamins. The hand-writing took longer than typing so that is where most of the time I paid for went.
At one appointment, she gave me a choice of vitamin “cocktails” I could have put into an IV. I got to choose the vitamins- as if I knew what I should use.
I was desperate so I kept coming back. She wanted me to go on Teitelbaum’s protocol. The first product, a vitamin powder, contained sugar. This was a direct opposite of the Candida diet that he and the clinic recommended. I bought the vitamins and came back when they told me to. At one point, I was in so much pain, I cried at my appointment. The doc brushed me off with another vitamin. She told me if I do not feel better, to call her.
The next week, nothing had changed. I was still in excruciating pain. My pain doctor gave me some meds which helped. I called the clinic only to find that the doctor was on vacation and would not be back for a week. The nurse told me she could not help me. She told me to make sure I followed their diet. I did just that. I told her that I went even further and eliminated bananas which are sugary.
I asked them for my records. They would not send them to me. So, I asked them to send them to my primary care doctor. They sent part of the records along with a letter from the doctor saying that I “created my own diet plan” and was “doctor shopping” for pain drugs.
I showed the letter to my pain doctor who advised me to speak with the Ombudsman of that state. I did so. Her advice was, considering how sick I was, that it would be best if I just let it go.The stress was making me more ill.
The fact that Teitelbaum donates any money does not impress me. The amount of money he gets from the clinic and vitamin sales is obscene. Stay away from anything that has to do with him.
Not a great experience Bobby but I don’t think that the outcome – that you spent a lot of money on something that didn’t work – is unusual at all in ME/CFS and FM. In fact I think its more common that uncommon! And there are some people who receive substantial benefit. I spent gobs of money, when I had it, on various doctors including one I’d been pointed to by someone who had been cured! The doctors were all confident — they all had good ideas — their protocols had worked on other patients and none of them, unfortunately were any help to me. I’m sorry though, that you treated improperly, though.
Hi Bobby, When I refer to Dr. Teitelbaum, I’m only talking about his books, and how many of his strategies have been helpful to me. I do not have any experience with his clinic. I’m up here in Canada and I can also give you some horror stories to do with inferior medical care. When I’m away from home and need more pain meds., I have also been treated with suspicion, like I was a drug addict, and that really hurts. I’m surprised that your medical system did not pay for your visits if you doctor had a MD. behind his or her name. Here, our government is so proud of their “UNIVERSAL HEALTH CARE” when universal is surely a misnomer in this case as I am now paying out of pocket for all of my health care delivered by my ND. What’s outrageous to me is the fact that we are paying lots of taxes. some going for the care of others. If I was younger and a lawyer I’d be too happy to take on my government as far up as the Supreme Court on my inequality on this matter, and I have no doubt that I’d win. Would you believe that our medical schools are hiring Naturopath Doctors to give classes on basic natural good health, and are still not officially recognizing them publicly! I personally know of 2 of them that are giving those classes. I’ve done enough venting for now as my stress level is climbing! I tell my Medical Doctor what my ND. is doing for me like you’re suppose to do, and he listens respectfully, and I applaud him for that. My help has come from many areas, and I’m extremely thankful for all the help I’ve received. Thank you Bobby for sharing your frustrations and allowing me to do the same.
What is the supplement that helps convert T4 to T3?
Hi Terrt, I did realize that I forgot to give the name of the natural product that is suppose to change T4 into T3 for thyroid problems, but I was pretty sure that someone would bring it up, and here you are. Thanks for that! The name is THROSOL by METAGENICS. I get it on line from a natural supplement co. If you’re in the US, http://www.totalhealthdiscountvitamins.com is carrying it and in Canada, I’m buying it on line at http://www.healthpalace.ca It seems to be working well. I’m giving it a 3 month trial, then I may come off it slowly to see what happens. I then have to decide whether the extra money adding it onto my BMR is worth it or not. I expect to have a few nasty side effects coming off for a week or so, as I had some for that period of time when I first started it.( a bit of a headache and wooziness. THYROSOL is made in California USA http://www.metagenics.com or phone toll free 1-800-692-9400 and if you’re not from the two countries I mentioned, they should be able to tell you where you can buy it closer to your home, if you’re interested in trying it. Edith
Edith – I’d love to know which amino acids you took that made such a difference. I took some a while ago but I can’t for the life of me remember which one it was. Every now and then I read a ‘recovery’ story, and I rush out and buy everything the person says they took, then get extremely depressed when nothing happens. Or, I read something else in a different blog/newspaper telling me that XY or Z supplement is extremely dangerous and should be discontinued immediately. My kitchen cupboard looks like a GNC shelf. It’s so disappointing. One thing, though – my GP is extremely against supplements. Not because he doesn’t believe they work, but because we have no guarantee whatsoever of whats in them. A lot of the companies are owned by Big Pharma themselves anyway, so what’s to stop them putting a certain amount prescription meds into their ‘natural’ pills? . Read this:
http://well.blogs.nytimes.com/2014/01/20/thyroid-supplements-with-a-kick/?_r=0
Scary.
Edith,
Thank you so much for sharing your long, complex journey. You make many important points. The scoliosis may be a very important part of your story – even if it is minor. I hope to write about this if I can get past some of this terrible fatigue and complete inability to function.
I tried d – Ribose and got very sleepy/tired . Anyone else have this reaction? Jane, Yes, I have 2 shoe boxes of supplements/ old meds. Crazy.
Thanks again to everyone who is contributing such interesting potentially valuable info. We just can’t give up !
Hi Jane. I don’t mind sharing what my prescription for my amino acid therapy looks like, but I’m omitting the exact quantities as I’m afraid that someone may use my doses that can end up being harmful to them. Everyone considering this therapy should be seeing a qualified MD. or ND., that can use an accurate lab such as the one that did mine called DOCTOR’S DATA. I’ll start by posting the warnings that came with my prescription. THE SUPPLEMENT SCHEDULE IS NOT INTENDED FOR USE BY PREGNANT FEMALES AND IS STRICKLY CONTRAINDICATED FOR INDIVIDUALS WITH KNOWN RENAL INSUFFICIENCY OR RENAL FAILURE. My prescription contains L-configured Amino Acids containing from 255mgs to 1410mgs, and it contains the following combination; TRIPTOPHAN, ARGININE, HISTIDINE,ISOLEUCINE, LEUCINE, LYSINE, METHIONINE, PHENYLALANINE, THREONINE AND VALINE. IT ALSO CONTAINS B6 IN THE FORM OF PYRIDOXAL-5-PHOSPHATE AND ALPHA-KETOGLUTARATE. The lab, also, recommends that: only pure L-FORM CRYSTALLINE AMINO ACIDS be used and prepared by credible pharmacies or purveyors who specialize in Amino Acid formulations. Also, the Lab. says: in order to get the full benefits of the Amino acid supplementation, one needs to ensure adequate intake of calories and the essential co-factors that permit proper metabolism of the amino acids (eg.B-6,B-12,folate,magnesium). Supplemental cysteine or N-acetylcysteine should not be given to patients who have been diagnosed with intestinal candidiasis. Pretty complicated isn’t it! That’s why we need the proper professional to sort it all out for us. Watch for a separate response on supplements, as I need to get my Lunch to help out my Amino Acids Ha!
Hi again Jane, Regarding Natural supplements, I agree with your Doctor that you don’t really know what’s in most supplements. There are excellent companies though that have their supplement contents and quality checked by independent labs. I also agree that some supplements should only be available to professionals in the health field, like my thyroid medications. When I spoke about that thyroid med., I did say that I consulted my ND. before starting on it and would not have used it, if he told me no, I’m adding that now. I’m also on some supplements that are not available to the general public except from DRs like my ND. I wish that the squabbling would just stop. The Medical Doctors and pharmacists are the experts on Drugs and Naturopath Doctors are the experts on Herbs, homeopathic medicines, supplements etc. and their only concern should be to provide the very best information in their area of expertise for the good of their patients. I’ve got to tell you here, that I have never heard my MD. say anything derogatory about my ND’s care and visa versa, which I admire them for. I did read the article that you refer to in your comment. I was concerned at the following statement “UNDER THE DIETARY SUPPLEMENT AND EDUCATION ACT OF 1994, SUPPLEMENT MANUFACTURERS ARE REQUIRED TO ENSURE THAT PRODUCTS ARE SAFE BEFORE PUTTING THEM ON THE MARKET.” That’s the crux of the problem! Who’s keeping tabs on them. Drugs also get on the market with serious side effects, if you turn on the TV, you’ll see commercials in which drug companies have to state their side effects and I’ve seen some that say “MAY CAUSE DEATH”. Who is looking out for us??? IT’s very much like the fox was put in charge of the Hen house. All I can offer is ” BE CAREFULL OUT THERE!!! Edith
I just wanted to share a couple of things. I didn’t have any success with the magnesium spray – it really caused a stinging/burning sensation on my skin and didn’t help with muscle cramping. One thing that does work if you get a severe spasm (Charley horse) it to press on an acupressure point on your upper lip. I saw this on Dr. Oz I think it was. As soon as the cramp starts, put your thumb inside your mouth above your upper lip and place your index finger on the outside of your upper opposite your thumb and press very hard pushing the two together. The cramp should start to subside immediately. It has worked every time for me. I take a lot of oral magnesium glycinate, but still battle tight muscles all over.
Hi Tanja My first reaction to a Charlie horse is to shoot right out of bed! ha! I’ll try your cure as I’m running around. I will still try the magnesium oil and see what happens. There is a great article on various types of magnesium on http://www.globalhealingcenter.com on 9 common types of magnesium explained. Magnesium citrate works great for me and I take the 150mg capsule so I can add more if I need. I read somewhere that taking a bit more at bedtime. helps a person to relax, so I take 300mgs at that time and found it works great. I noticed that I was more relaxed as well when I woke up in the morning. I tried magnesium malate once and it did not work at all. Hope that article mentioned above will help you with you’re decision. Thanks for your helpful information.
I had a huge improvement once I started on phenylalanine. My need for this was discovered when my osteopath (also trained as a naturopath) did some kinesiology testing on me and I added in a block of chocolate. I knew that chocolate made a huge difference but he laughed at the thought of it helping. He laughed even more when he discovered that it DID help. Of course, the sugar and dairy in it were also doing bad things. He then tested me for various components of chocolate and came up with phenylalanine. It made a huge difference to me.
After reading this article I am now wondering about other amino acids, but I don’t know who could test me for them.
Hi Diane. My test was done through my Naturopath Doctor, and it was only a 24 hour collection that was sent to DOCTOR’S DATA INC. 3755 ILLINOIS AVE.,ST CHARLES,IL. I see on the report that they are a MEDICARE PROVIDER NO 148453. I also see that my ND. has a client number with them, which tells me that your health care provider has to make prior arrangements with Doctor’s Data for the test. If your Naturopath is actually a Doctor like mine, He/She, would no doubt, be able to access that test. If not, and there is a difference between just a Naturopath and a Naturopath Doctor, your MD. should be able to do it. An ND. is like a MD., but on the natural side. I did not check the internet, to see if I could get more information on Doctor’s Data, so that may be something you can try. Good Luck.
Thanks so much for all these details Edith. I should have said that I am in the UK, so the systems are all very different. I don’t believe my naturopath is an ND. As for my GP, I would have a lot of trouble persuading her to try anything like this!
The phenylalanine made a huge difference to me and I would describe myself as ‘walking wounded’. Next week I’m going on a cruise. I won’t do much in the day but I plan to dance in the evenings (hopefully about every fourth dance). I am well enough to make such choices, but not well enough to do everything.
I tried substituting tyrosine for some of the phenylalanine but could not get the dosage right. It interfered with my sleep. That’s where your test would be so helpful. My naturopath could tell me that my body needed more tyrosine, but not what quantity of it.
Hi Diane. Thank you for bringing up important questions that I regret not including in my blog. If you google Labs in the UK that do Amino Acid testing, you’ll find various ones that do and I’m sure would be able to answer all your questions. For those in another Country, drop the UK and add the name of your own. I did go onto http://www.doctorsdata.com and gathered the following information especially for those who do not have a computer. This is the Lab. that did my test. You need to be a LICENCED PHYSICIAN and create an account with them. I’m adding here, that my Naturopath Doctor qualifies and probably Holistic Doctors and Integrative Doctors and Doctors of Chinese Medicine would qualify. There may also be others that I’m not familiar with, especially in other Countries. You will get that information from the Lab. you are considering closest to you. For the USA & CANADA, phone toll free 1-800-323-2784. When it comes to your GP, ask her. You may want to bring to her, the information in my article on Amino Acid treatment and the incredible benefits I received. If she says no, at least you know where she stands, and you can find someone else that will get the test done for you. Check with your health care insurer to see which DR. is covered and you may not have to pay for the test, as it’s expensive. Let me know if you have any other questions. Enjoy your cruise and go dance girl!
I would love to get the information on who your naturopath was as they sound wonderful! Thanks