Stiff Person Syndrome: Part Three

Stiff Person Syndrome
Part Three

This article is continued from Stiff Person Syndrome: Part Two.

Parts One and Two of this article were written in December of 2001. It is now September 2002, and a lot has happened in the past nine months. So it will take three more parts to this article to bring the story to date.

Worsening Condition

To recap, on August 27, 2001 I had been diagnosed with fibromyalgia. This was due to fatigue and generalized torso pain I had been experiencing. Then on December 12th I was diagnosed with stiff person syndrome (SPS). This was due to the way my muscles were becoming progressively stiffer.

In December I had been going to physical therapy. But I finally gave up on it shortly before Christmas. It wasn’t helping at all. In fact, I was getting progressively worse. There were now times when I could barley move at all. Mornings were especially difficult. It was to the point that when I went to bed at night I wasn’t sure if I would be able to get out of bed in the morning or not. Then starting in January 2002, I began to have episodes where I was completely paralyzed for several hours at a time. And when I say completely paralyzed I mean it. Some episodes were so bad I could not move anything except for my eyelids. On other occasions I wasn’t quite so bad; I could move my hand just enough to work the TV remote control, but that was it. What was really scary was when I would be out somewhere and begin to notice I was stiffening up. A couple of times I barely made it home before I became paralyzed. So I was beginning to get afraid to go anywhere.

However, what was instructive about these episodes was they always happened shortly after I was exposed to something I was allergic to. For instance, I was exposed to Comet cleanser one afternoon. Shortly thereafter I began to stiffen up. I barely made it to a chair before I was paralyzed. And I remained that way for several hours. So with allergies obviously causing these flare-ups, it made sense that they were the cause of my increasing stiffness in general. In addition, as my stiffness grew worse so did my food allergies. And eating or even just smelling an allergenic food could cause me to become so congested that I couldn’t sleep at night. And I was sure that allergenic foods were contributing to my increasing stiffness as well. So I was getting afraid to eat or even be around others who were. As a result, I began losing weight that I didn’t need to lose and had to live a rather isolated existence.

Some of the weight I lost was probably because I was no longer working out. The last time I had worked out with any consistency was several months previously, around the middle of the previous summer. And I had stopped working out altogether, or doing hardly any physical activity, since November. So I was losing muscle fast. But I also was losing weight simply from the lack of eating. I know this would sound good to many, but I was not overweight to begin with and was now getting rather underweight. The only real exercise I was able to do at this time was walking. But the best I could manage was to walk about half a mile in 15-16 minutes. The year before I had been walking 3½ miles in an hour, so this was a very short and slow pace for me. But it was the best I could manage with how stiff my muscles were becoming.

Also, I kept trying to do some stretching to help with my stiffness. But this was becoming rather futile. When I was “stretching” I wasn’t able to move hardly at all. For instance, before this whole nightmare began, when doing a modified “hurdler’s stretch” I could easily place my nose on my knee. But now my legs were so tight I couldn’t bend forward at all. So if someone had been watching me, they would have thought I was sitting perfectly still.

Meanwhile, the feeling of pulling muscles continued. It was to the point where doing the simplest activity, such as simply taking a step, could bring on a pain that felt like a pulled muscle. But even with as weak and out of shape as I was becoming, it was hard to believe that I could injure myself so easily. But it sure would feel like I did, and the feeling was very disconcerting to say the least. What was especially disconcerting was that I was to the point where if I lifted more than just a couple of pounds it would feel like I had hurt myself. As mentioned in passing in Part Two of this article, at one time I had been crippled with low back pain. And during that time I couldn’t lift more than two pounds without feeling pain in my back. And now, once again, I was in the same situation, except now, the pain could occur anywhere in my body.

Plus, the fatigue had worsened to the point where I could barely manage to get much of anything done. Just typing on my computer was exhausting. For that matter, just sitting up to read or watch TV could get me exhausted, so I had to lie down frequently. This again, was reminiscent of my back pain when I had to lie down every half an hour or so due to the pain in my back.

I felt like I had taken a big step backwards health-wise. But even worse, with the way things were going there was the very real possibility that I could end up completely and permanently paralyzed. And that thought was horrifying, to say the least.

Changing Doctors

In Part Two of this article I mentioned that I had been to a neurologist and was going to a chiropractor for allergy treatments. As far as the neurologist is concerned, it took six weeks for him to get the results from the anti-GAD (glutamic acid decarboxylase) antibody test. And it ended up being negative. As a result, the neurologist felt that my condition wasn’t within his realm, so he suggested I go see a rheumatologist. Even my PCP thought this was rather strange given that a positive anti-GAD test was not necessary for one to have stiff person syndrome, as mention in parts one and two of this article. What matters is that one has the described symptoms, which I did.

Meanwhile, by mid-January, I had been going to the chiropractor for five months for his allergy treatments. During that time I had undergone a dozen treatments, having gone to him about 2-3 times per month. With as busy as he is, and even with him being nice about trying to squeeze me as often as he could, this seemed to be the most I could get to him. But it was to the point now where I seemed to be allergic to just about everything, so I knew I would never get in treatments for all of my allergies at that rate. However, the chiropractor did remain adamant that allergies were in fact the cause of my problems. And my experiences of getting paralyzed when being exposed to something I was obviously allergic to seemed to confirm this.

Now prior to this time I had been reading the book Allergy Relief by Sylvia Godlfarb, PhD. In it she devotes a chapter to each of seven different alternative allergy treatment methods. I had already tried many of things she mentions, such as various supplements and homeopathy. But these had proven to be worthless wastes of money. However, one of her chapters was on NAET treatments. NAET stands for “Nambudripad’s Allergy Elimination Techniques.” Nambudripad is the name of the doctor who “invented” NAET in the 1980s: Dr. Devi Nambudripad. Given the difficulty of her last name, most people refer to her as “Dr. Devi.”

The chiropractor had never used this term, but it was with the reading of the description of NAET treatments by Goldfarb that I realized that the allergy treatments the chiropractor performs are in fact NAET treatments. But more importantly, Goldfarb’s gives the URL for the NAET Web site. So I decided to check it out to see if there was another doctor in my area who performed NAET treatments. And sure enough there were two chiropractors both working out of the same office who did NAET, so I decided to give them a call.

When I called I talked to one of the chiropractors. I explained to her my health problems and that I had been getting NAET treatments done. I told her was wondering how often she would be able to see me. She said that given the seriousness of my condition, she would make me a priority and would probably be able to see me three items a week. So I went ahead and made an appointment.

[Update: It should be noted that prior to this time I had been to a traditional allergist. In retrospect, I should have pursued allergy shots with him, a real doctor and a proven treatment method, not the quacks using NAET, an unproven, illogical, and unscientific methodology. For details, see the section "Not Getting Proven Treatments" near the end of Dangers of Applied Kinesiology and NAET.]

What is NAET?

What is NAET? Briefly, it is a combination of chiropractic and acupuncture theories. It involves both a testing and a treatment phase. The testing is done using what is called “Applied Kinesiology” or Muscle Response Testing. A muscle is tested as to whether it tests strong or weak in the presence of a suspected allergen. Applied Kinesiology can also be used as a “diagnostic tool” to determine the cause of a patient’s health problems. This is the testing method that the chiropractor had used to determine that allergies were the cause of my various symptoms.

After the testing, if an item is found to be an allergen, the treatment then consists of the patient holding the substance. The practitioner then stimulates trigger points along the spine four times, and then several trigger points in the arms and legs. The patient then holds the substance for another 20 minutes. The practitioner then re-tests to be sure the allergen has cleared. That’s the easy part. The difficult comes next. For the next 25 hours the patient must completely avoid the item that was treated for. The item cannot be touched, eaten, or smelled in any form. And this can be very difficult for some items.

What makes it especially difficult is that a combination of items is usually treated for at once. For instance, the first treatment is generally for the “egg mix.” Along with egg yolk and egg white, this mix also contains chicken, tetracycline (an antibiotic sometimes given to chickens), and feathers. So for the 25-hour avoidance period the patient cannot touch, eat, or smell eggs or anything that contains eggs (which includes a lot of foods), chicken, any food from an animal that might have been given antibiotics (which is basically any commercially raised animal), birds, and anything made with feathers.

Most allergies can be cleared with just one treatment, but very serious allergies sometimes require two or more treatments. But once an allergen has fully cleared, the patient should no longer be allergic to it and should be able to freely eat or be exposed to it without problems.

It should also be noted that the NAET definition of allergy is rather loose. A person can be considered to be “allergic” or “sensitive” to just about anything, not just commonly thought of things like foods and pollen. For instance, the second treatment is for the “calcium mix.” Yes, calcium. In NAET theory one can be allergic to common and necessary nutrients. And being so can have serious health implications. Since calcium is so widespread in foods, being allergic to calcium would mean one would be reactive to a wide range of foods. This would also mean there would be very few foods one could eat during the 25 hour avoidance period.

Moreover, NAET theory states that if one is allergic to a nutrient or a food that contains it, then one’s body is not able to properly absorb and utilize that nutrient. As a result, even with adequate intake one could end up deficient in that nutrient. And a deficiency in any necessary nutrient can have serious health consequences. So the NAET practice is to first treat the allergy to the nutrient then to recommend eating a healthy diet and supplementing with that nutrient to build back up ones levels of the nutrient.

For a more detailed description of NAET theory and practice, see the items listed at NAET and Applied Kinesiology. See also the NAET Web site and the two books by Dr. Devi: The NAET Guide Book and Say Goodbye to Illness.

Decision to Try NAET

To learn as much as I could about NAET, I spent quite a bit of time on the NAET Web site. At that time, it had a discussion board, and I participated in it quite regularly. Unfortunately, that discussion board has since been closed down. And that is a shame given that it was reading comments by people who had undergone NAET that encouraged me that this just might work. Many people posted messages saying that even very serious allergies had been cured with NAET. And more importantly, there were many testimonies of people who had fibromyalgia and various autoimmune disorders that had been helped with NAET. But one discouraging thing was the number of treatments most people said they needed. It seemed that most people had received as many as 30-40 treatments and a couple as many as 100.

This was discouraging for a couple reasons. First, even with going three times a week, it would take a quite a while for me to receive this many treatments. And I was getting rather desperate for immediate relief. I had considered going ahead and taking a drug like Prednisone to get some immediate symptomatic relief. Then I could phase off of it when I figured I had received enough treatments to make a difference. But the problem with this was I didn’t want to start two things at once. If I did get some relief I wouldn’t know which treatment it was providing the relief. I was also leery of the side effects of drugs like Prednisone.

The second reason the number of treatments was discouraging was the treatments wouldn’t be covered by insurance. So I could easily be looking at spending as much as $2000. This was a lot of money to spend on something I still wasn’t really sure would work or not. But it did seem like the best option for a couple of reasons.

First, it did seem clear at this point that allergies were the cause of my problems. Second, if NAET worked “as advertised” then I should be able to just spend this money, get the treatments, and then go on with my life. But if I were to go the drug route, then I would have the ongoing expense of these drugs the rest of my life. So in the long run I would probably end up spending even more than $2000. Plus, there would be the fact that I would be dependant on these drugs thereafter, and would have possible ongoing side effects to deal with as well.

So with some hesitancy, but with hope as well, I decided to go ahead and make an appointment with the doctor. I knew I was in for an expensive and long haul even if it did work. But it seemed like the best option. [But a big mistake. I did not just "go on with my life. I am still dealing with the negative aftereffects of the NAET treatments now over a decade later].

This article is continued at Stiff Person Syndrome - Part Four.

Disclaimer: The material presented in this article is intended for educational purposes only. The author is not offering medical or legal advice. Accuracy of information is attempted but not guaranteed. Before undertaking any diet, exercise, or health improvement program, one should consult your doctor. The author is in no way responsible or liable for any bodily harm, physical, mental, or emotional, that results from following any of the advice in this article.

The above article was posted on this Web site September 21, 2002.
The bracketed updates were added February 2, 2015.

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