Nancy and Bee Venom Therapy
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Hello to all PWCs! My name is Nancy and I became ill on 10/25/94. I am writing to all who are interested in what has led me on my road to recovery from this debilitating illness.
Early on I decided to learn as much as I could about this baffling illness so I could make informed decisions about my treatment. It wasn't easy the first year because I had severe cognitive problems along with all the other symptoms that all of you are so familiar with. I also decided not to try to take a lot of medicines to treat each symptom. The first thing I tried was hypnotherapy which helped a little with the muscle aches and recharged my batteries. The only problem I had with that was getting dressed and driving to the doctor's office was such a chore that the benefits I gained by each session were minimal by the time I got home. I solved that problem by using a guided meditation tape and using visualization techniques on my own on a daily basis. To date, I continue this practice.
In November 1995 my doctor and I read about the Johns Hopkins study and decided on a one week trial of .1mg Florinef daily without the tilt test. The multiple attacks of total brain fog and feeling like someone just pulled out my plug and must lie down gradually went away. I have been taking .1mg Florinef every day. I was now partially functioning but the fatigue and muscle aches were still the most debilitating symptoms.
I read about bee venom therapy (BVT) being used successfully to treat patients with arthritis and multiple sclerosis. CFIDS and MS have similar symptoms. One of the beneficial effects of bee venom is that it stimulates the adrenal glands to produce cortisol and is effective in treating illnesses that respond to cortisone without the undesirable side effects of the synthetic form. I searched the internet under "apitherapy" and found The American Apitherapy Society . There I found a paper written by Dr. Theodore Cherbuliez, the President of AAS on treating chronic illness with BVT which also mentioned CFIDS. I was lucky to live about 30 miles from his office located at 1209 Post Rd. Scarsdale, N.Y. 10583 and immediately called him at (914) 723-0920 to make an appointment.
This wonderful, generous man devotes a lot of his time to teaching Apitherapy (the healing use of the products of the hive such as honey, pollen, royal jelly, propolis and bee venom) free of charge to the medical profession and the general public. During my one hour appointment, he took my medical history, explained the benefits of BVT and possible allergic reactions to it, and answered all my questions. He told me that I could have one test sting to make sure I was not allergic to bee venom and wrote a prescription for an epi kit. He also warned me to always have it nearby when I practice BVT at home (a small percentage of the population could go into anaphlactic shock when stung by a bee and having an epi-pen and some Benadryl nearby and staying calm will reverse the symptoms.)
Yes, you understood correctly, BVT is done with live honeybees! After my first test sting, when he felt confident that I was not allergic, he told me that I was entitled to two more stings if I wished. I agreed, and he cooled the area to be stung with a small metal can from the freezer. He demonstrated how to pick up a live bee from a jar he kept on his desk, by the thorax, using long tweezers and as soon as he placed the bee on my skin, the bee stung me. He left each stinger in for five minutes to allow all the venom to be released, and gently removed them with tweezers. I made an appointment for the following week, and he gave me his home telephone number in case I needed to get in touch with him. Now that's a dedicated doctor-- and all this for free!
I went back the following week and he told me that I could increase two more stings each time, so this time I chose to do five. That evening I began to feel sick and all eight areas that had been stung were hot and very swollen. I had read that this is a very desirable reaction called a "healing crisis" and that the immune system is waking up. The next morning I had a fever of 102 and called Dr. Cherbuliez at his home on a Sunday. He assured me that as long as the fever is under 104 not to be concerned and that this was a desirable reaction. He also suggested that I start taking one teaspoon of royal jelly, two teaspoons of pollen and ten drops of propolis every morning for at least two years. The propolis has antiviral and antibacterial properties and the pollen and royal jelly have lots of nutrients that would help me. By the next morning I felt better and continued the stings on my own (bees can be shipped by mail -- 60 bees for $12.50 or free of charge from a local beekeeper) building up to six stings every other day for six months.
BVT is not a cure, but for me it has given me my life back. I no longer wake up feeling like I've been hit by a truck - my muscle aches are gone and I have a lot more energy. Even after I stopped BVT I continued to improve along with occasional setbacks, especially around the time I am due for my period. In May of this year, during a mild relapse, I started B12 shots every month. After about two months I began to feel "normal". For four glorious months I was symptom free!
About a month ago I started to get that old feeling in my arms and legs and feeling a little tired. Before my symptoms were full blown, I began stinging again and am feeling good again. I will continue to do BVT until I feel confident that I am in remission. I know I have written too long, but it's with the hope that it can be of help to fellow PWCs who are still searching for a miracle cure. Some of you may think it's bizarre or too good to be true, but the MS Association of America was granted a new drug approval status by the Food and Drug Association to begin a new Phase I study of BVT. The study will be done in conjunction with the Georgetown University Medical Center with Dr. Joseph Bellanti. Anyone interested in more information could email Dr. Cherbuliez or contact him at the above address and telephone number and log into the American Apitherapy Society site I have mentioned above.
Good health to all,
Written December 20, 1999
Eleanor and the Blood Type Diet
I credit my remission/recovery? almost completely to following the Blood Type Diet. (BTW, I'm type O.) I've been experimenting with the diet on and off for two years - it's not easy to make a big change in your eating habits, especially with CFS like an albatross around your neck! But I've finally figured out how to make it work for me. The hardest part is that you have to change your whole attitude to food.
Actually, I guess I should start by talking about celiac disease. Bear with me, this will make sense in a minute!
Before I found out about the blood type idea, the first step to relieving my CFS symptoms was eliminating gluten (wheat, rye, oats and barley) from my diet. I did this on a hunch, after noticing that wheat exacerbated the digestive problems I was having at the time. It seemed to help. I felt a bit better when I wasn't eating gluten, and felt much worse right away when I tried adding it back.
Now, there's a medically recognized condition where your immune system reacts to gluten. It's called Celiac Disease (CD). It used to be considered a rare digestive disease of childhood. In the last few years, however, it's been shown that at least 1 in 250 Western Europeans and North Americans have CD. Most of them have no digestive symptoms, and it usually starts in adulthood.
There are many manifestations of CD, but among the most prevalent are fatigue, bizarre neurological symptoms, "fuzzy-minded" feeling, depression, and mood swings. The mechanism isn't clear, but it involves a wonky immune system (I think that's the technical term
Is any of this starting to sound familiar?
Unfortunately, the diagnostic tests for CD (blood test and/or intestinal biopsy) only work if they're done before you start the diet for healing CD. So there are a lot of people, myself included, who almost certainly have it but are stuck in diagnostic limbo. But on the other hand, if you walk into your doctor's office and say "I feel tired all the time; maybe I have celiac disease", they'll almost certainly laugh in your face. A real catch-22.
So, if you think this might apply to you, there's a recent article from the British Medical Journal which you can check out. I'd suggest you print it out and discuss it with your doctor. The BMJ is a very mainstream publication, and there are several other recent studies supporting what they're saying.
Hope this wasn't too long-winded. I really don't like having to present myself as an authority, but I'm coming to the conclusion that I know as much as anyone about the celiac/CFS connection as anyone. Also, the Blood Type O diet is wheat-free and very low in gluten, and would almost certainly screw up the test results should you ever want to get tested for CD.
Back on topic:
After going gluten-free, I recovered about 75%, but still had relapses and generally felt unwell most of the time. I started thinking I might have CFS (as well as, or because of, or instead of, CD), but figured I'd be better off dealing with it on my own, as the doctors had been extremely unhelpful up to that point. I wanted to support my immune system by following an optimal diet, but I needed a new standard, now that I was going against the grain of most nutritional advice (pun intended). When I noticed Eat Right For Your Blood Type (ER4YT for short), it appealed to me for a few reasons:
- it says that we all have different dietary needs
- it says that as a type O, I shouldn't eat wheat
- the science looked interesting
- it just seemed sensible and balanced
Dr. D'Adamo suggests that most people will be fine if they follow the diet 75-80%, but that seriously ill people may need to follow it 95-100%.
Unfortunately, I guess I'm in the latter category. I experimented with the diet for a while, but didn't see a dramatic improvement until I followed it 100%, with the additional restrictions of:
no gluten grain [ER4YT allows spelt, oats, rye and barley]
no caffeine [ER4YT allows green tea]
no concentrated sugars [ER4YT allows them in moderation]
and keeping my intake of the allowed grains to a minimum.
That was the plan I came up with two years ago. I found it very difficult, especially since I was working full-time. But, a week into it, I was much better, mentally and physically, than I'd ever been in my life! I really felt like a new person, constantly happy, relaxed and energetic.
It was really hard to sustain, though, mostly because food is such a cultural thing, and I couldn't really eat anything with other people. Family and friends are unlikely to support you in such a weird diet, especially when they don't really believe that you're sick to begin with. :( :( I also love to cook and bake, and have an extensive cookbook collection, but the diet doesn't really give much scope for this activity. It tends to consist of very simple (but tasty) food.
So I've been trying less-strict variations of the diet ever since (e.g. just excluding gluten, dairy and corn), but they haven't worked nearly as well as the original plan. The sugar thing in particular gets me every time. I must be a bona fide addict, since it seems like I can't ever have "just a little". (Right now, I'm in a mini-crash, precipitated by having too many pieces of the flourless chocolate cake I made for a dinner party last weekend. But at least I can give dinner parties! I'm not complaining.)
I think that as the diet catches on, which it seems to be doing, it will become less "weird" and alienating, and thus easier to stick to. If it weren't for the discussion boards at the Eat Right for Your Type Diet Website, I might not have been able to stay with it at all.
If you have any questions, please feel free to ask! My knowledge of the A, AB and B diets is pretty limited, but if you're an O, I've written out some instructions and advice, including a few very easy recipes, which I'd be happy to send to you.
I've also been taking Cat's Claw recently, and it seems to help balance my mood and energy levels, which used to swing between semi-hyper and semi-crashed. Best of all, I even think it's helping me tolerate foods I've been avoiding for months, because they trigger my CFS symptoms, including wheat and sugar.
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