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Jacki's Story

(from "Chronic Fatigue Syndrome" diagnosis to
MCS diagnosis and improvement at last!)

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Imagine being a very happy, active person with a wonderful career, a wonderful spouse, great friends, a loving family - and then almost overnight becoming so weak, dizzy, exhausted, and "spacy" that you couldn't function any more. Imagine sleeping for 10 to 12 hours a night and waking up every morning feeling just as exhausted as when you went to bed. Imagine going to doctor after doctor, trying to find out what was wrong with you, only to find that the medical community had no clue as to why you were having such bizarre symptoms. Imagine being sent to a psychiatrist because your doctor thinks you're just "depressed" and need to "snap out of it" - force yourself to keep functioning (despite the fact you're happier than you've ever been!). Imagine trying to do just that, only to end up sicker and sicker, until finally you have to quit the job you love so much - as well as virtually every activity you previously had participated in - because you were simply too weak to hold your head up for more than a few minutes at a time. Imagine having to resort to using a wheelchair for going shopping, etc., because you were so dizzy and had such balance problems that it made it difficult to walk.

Well - I don't have to imagine all these horrible things - I've lived through them. This happened to me beginning in December 1989. After almost 2 years of suffering from these disabling symptoms (plus many others), I was finally diagnosed in 1991 with "Chronic Fatigue Syndrome" (CFS) by a reputable Infectious Disease Specialist in Gainesville, Florida. He said there was basically no treatment for CFS and that I would just have to learn to rest and not try to push myself anymore. Following this advice, I suffered for 4 more years with no improvement in my symptoms - I could barely remember what it felt like to feel "good". During this time, I wrote a little poemto express my feelings.

Finally, in September 1995, I read a book called "Tired or Toxic?" by Sherry Rogers - which has totally changed my life! In the pages of this book, I found that every one of my bizarre symptoms could be caused by exposure to toxic chemicals in my environment. I learned that our bodies can only handle so many toxins before our immune systems will "overload" and not be able to process them any more. I started to look at the years just prior to my becoming ill and all the pieces finally fit into place. I had done many things that led to my getting sick - without realizing it. I share this with you, so that maybe you won't have to go through what I have gone through...

Looking back, I realized that my "chemical poisoning" began when I spent over 10 years living in mobile homes. Mobile homes are made of lots of particleboard, glued wallpapers, synthetic carpets, etc. - all of which outgas formaldehyde. Formaldehyde is very toxic and causes many of the symptoms I experienced: dizziness, spaciness, etc. It also weakens the immune system, making you more vulnerable to other toxic chemicals. Formaldehyde is in MANY things these days. It's in most cosmetics - including BABY SHAMPOO and BABY LOTION. Look for "Quaternium-15" on the label - that's formaldehyde in disguise. It's also in the clothes you wear - if they're permanent press or polyester. It's in your polyester/cotton bed sheets. It's even in a lot of the food you eat. And, yes - formaldehyde is the stuff they embalm people with. At this rate, we won't need to be embalmed by the time we die!

I believe now that the beginning of the downfall of my immune system actually occurred before I was even born! My mother was given the drug "DES" while pregnant with me to help her carry me to term since she'd had a lot of trouble conceiving. It is now known that this drug adversely affects the offspring's reproductive and endocrine systems. Also, both my parents were heavy smokers, and back in the 1960's they didn't realize it was not healthy to smoke while pregnant. As a child, I was constantly exposed to the cigarette smoke. I also had many "silver" fillings placed in my mouth, which I now know are made of about 50% MERCURY! Mercury is even more toxic than ARSENIC and yet it's placed in our mouths because it's cheap and easy to use! This mercury leaks out of the fillings and can slowly cause health problems, similar to the way arsenic poisoning happens slowly over time. (NOTE: I recently underwent amalgam removals and hope this will also help improve my health!)

Then in 1987, when Gorden and I got engaged, my doctor prescribed birth control pills for me. I now know that birth control pills also weaken the immune system - especially the ones with high amounts of estrogen. They also lead to candida overgrowth (yeast infections). The candida further weakens the immune system and also releases toxins into the bloodstream. I had immediate reactions to the birth control pills - they totally "confused" my hormonal system. Instead of taking me off them, my doctor kept increasing the dosage, thinking this would help straighten me back out. It did the opposite. At one point, I was taking 3 pills a day of the highest-estrogen pills that were available! I finally got off them since they were only making matters worse - however, my reproductive system never fully recovered. I developed fibroids and endometriosis (both signs of too much estrogen) and eventually had to have a hysterectomy. If I only knew then what I know now...

In 1989, I started working in a "sick building". It was a new building with all new carpeting, new paint, new partitions, new furniture, etc. I now know that all these things outgas MANY toxic chemicals. Since my immune system was already weakened, this was too much for it to handle. In November of 1989, I came down with a BAD case of influenza, which lasted many weeks. I was put on several courses of antibiotics over the next several months. I now know that antibiotics weaken the immune system by killing off the "friendly bacteria" that help us, which can lead to candida overgrowth. Doctors are WAY too quick to prescribe antibiotics for their patients - most people will get well without them, unless it's a true case of "bacterial infection". Garlic can be used as a "natural antibiotic" to help us to overcome infections. Large doses of Vitamin C can help as well.

In 1990, my symptoms became severe and chronic - and stayed that way until we made the "chemical connection" in 1996. In 1993 we started spraying our house with Dursban to get rid of fleas. We had no idea this pesticide was as toxic and dangerous as it is! I couldn't tell at the time how much it was affecting my health because I already had such severe symptoms. Looking back, I now see that many "new" symptoms began right around the time we started using the Dursban.

This is the bad news. The GOOD news is that I now know what to DO about my illness! "CFS" was something I had no idea how to treat - it left me a "victim". "MCS" on the other hand, gives me many things I can do to help myself get well. Recovering from this illness involves: cleaning up your environment, avoiding toxic chemicals as much as possible, eating as many organic foods as possible (almost all regular foods are loaded with pesticides), taking nutritional supplements, using "neutralizing" allergy shots, and many other things. The first thing we did was to find an "Environmental Medicine Specialist" here in Florida (Dr. Albert Robbins, recommended by the American Academy of Environmental Medicine). We had to travel 9 hours to Boca Raton to see him, but it was worth it! I went through a week of testing and evaluation, and Dr. Robbins found I was extremely allergic to many substances. This is due to the immune system being so "overloaded" - it can't handle things like it should. He prescribed special allergy shots, which "neutralize" my symptoms, as well as help my immune system to stop over-reacting so much. (See Neutralizing Therapy and Maximum Tolerated Dose Testing and Therapy for more information.) He also gave us instructions as to what all needed to be done to clean up our environment.

While we were there, we stayed at a place called "The Natural Place". It's run by a couple with MCS, and it's totally non-toxic! They allow NO scented products, cigarette smoking, or pesticides on the premises. They have all 100% cotton beds and bedding, no carpeting, solid wood cabinets, etc., and provide air filters for each unit. The most interesting thing happened while we stayed there: MY SYMPTOMS GREATLY IMPROVED!! For the first time in over 6 years, I FELT GOOD!! Being in that "clean" environment allowed my system to "detox" from the overload of chemicals. When I returned home, all my symptoms returned also. This just proved to us that the chemicals had been causing my "CFS" all along. We left Boca with a renewed sense of hope that I would finally get well.

Since that time, we've been really working hard at eliminating as many toxic substances from our home as possible. We've switched to all non-toxic products for cleaning, personal care items, etc. We've gotten rid of all our clothes except for 100% cotton that is not "permanent press". We've also replaced our bed sheets with 100% unbleached, undyed, untreated cotton sheets. We've replaced our toxic foam/polyester pillows with 100% organic cotton/wool or buckwheat hulls. We've replaced our vinyl shower curtains with 100% unbleached cotton ones. We've bought shower filters to remove the chlorine from the showers. We've been buying glass-bottled spring water for drinking. We've eliminated as much plastic as possible (use glass jars for storing food, etc.). We have to air out the newspaper outside for 24 hours before it can come into the house. We've removed our carpeting and replaced it with ceramic tile. We've gotten rid of our particle-board computer desk and replaced it with metal shelving.

No one can come to our home without first "detoxing" themselves from as many chemicals as possible - they can't wear any scented products and have to wash their clothes in baking soda instead of scented detergent, or I could have a "reaction". My reactions include everything from facial redness and "hotness", dizziness, balance problems, fatigue, blurred vision, burning lips and tongue - all the way to having hallucinations and being temporariliy "paralyzed" due to leg weakness. For a long time, I had to wear a mask or use a "personal air purifier" whenever I'd go anywhere other than my home. This has improved quite a bit now that my immune system has had many years to "recover"! I am thankful to God for His healing...

Has this totally changed our lives? YES! But the good news is that now I'm experiencing a "boost" in my well-being again! With each toxic item we removed from the house, I got a little bit better and better! I now mainly feel bad after an exposure to certain chemicals instead of all the time. We still have some changes to make - we need to replace our mattress with a 100% organic cotton mattress. We need to get rid of the particle-board kitchen and bathroom cabinets (or at least seal them). I may even have to go through a medically-supervised "sauna detox" program to get the stored toxins out of my fat cells. However, what we've done so far has enabled me to improve quite drastically! I've gone from being virtually bedridden (or chair-ridden) to being able to function fairly normally during the day - doing light chores, such as laundry and cooking - as long as I get enough rest! I'm also able to walk 20 minutes every night now - that is, when the air outside doesn't reek of DOWNY from the neighbors' dryer exhausts! I have to hold my breath until Gorden tells me the smell has blown away! I sure wish people realized how toxic fabric softeners and dryer sheets are! They even have chemicals that say not to ever heat them!! (See the Fabric Softener Information page.)

The only step we've taken that I truly regret is when I had all my "silver" (amalgam) fillings in my teeth replaced (22 fillings, involving 14 teeth). I do know of people that this has helped, but it hasn't helped me at all health-wise and has left me with over a year of constant pain in my teeth. I lost 1 tooth that had to be pulled, as well. The problem was that the dentist did not warn me about just how excruciating the pain could be before I had this done - they said it was similar to getting a filling - and that I'd probably have "a little sensitivity" afterwards. Was THAT ever an understatement! I had to take strong pain-killers daily for a solid two months after the removals, and that just barely kept me comfortable! The other problem is they talked me into having all 4 quadrants of my teeth done the same week - in 4 consecutive days. This was probably the biggest mistake we made. I had no problems with the exposures during the removals - they did follow the recommended protocol for removing the amalgams. However, the pain and problems with chewing I have suffered since then were just unbearable. For almost a year I was not able to chew anything even slightly crunchy - even pickles or onions - and absolutely nothing to eat or drink that was colder than room temperature! If something cold hit those teeth - it would almost make me say dirty words it would hurt so bad! I even had to brush my teeth with warm water only. I'm just now starting to be able to chew regularly again - nuts are still out, but it's getting better all the time. Also, the filling material they used on me was a "composite" and they're not lasting at all. I've already had to have 2 crowns and a bridge (involving 3 teeth) because the fillings started cracking the minute I was finally able to start chewing on those back teeth. I'm just putting this out there because I feel I wasn't given complete information before making the decision to go ahead with my removals. I now would tell people to try absolutely EVERY other way to reduce their toxic exposures first (cleaning their environment, switching to non-toxic products, etc.) before making the decision to have their fillings removed and replaced. And even then - only if you're still really disabled from your condition...

It does makes me quite angry that we're having to do all this to "undo" the damage that modern-day living has done to me. If I had only known that I was being poisoned, I might not ever have become so sick. Please listen to my story and don't let the same thing happen to you! It's like playing "Russian Roulette" - you never know how long your immune system can hold out before breaking down.

What has kept me going through all these struggles is a deep faith in God. I have put all my trust in Him, and He has never let me down. He constantly reminds me that He is still in control and still cares for me. If you'd like to learn more about our faith and trust in God, please see "Our Christian Faith"pages.

We went back to Boca Raton in November of 1997 for retesting and discovered that most of my allergies had been reduced by about 50%! This just confirmed that what we did was working and that I will continue to get better! We are so thankful for this. Now my goal is to help other sufferers who think they have "CFS" or "Fibromyalgia" to "make the connection" and get better too - as well as to help to educate others about the health risks of using certain products so they can learn to protect themselves. I hope my story has given you hope and encouragement if you are sick, and enlightenment if you are still healthy!

 


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