From Chronic Fatigue Syndrome to Multiple Chemical Sensitivity Diagnosis and Improvement at Last!
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 "spacey" that you couldn't function any more. Imagine sleeping for 10–12 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"—to 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 special high-back wheelchair for going to church, shopping, etc., because you were so dizzy and had such balance problems that it made it difficult to walk and you were to weak to hold your head up unsupported…
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 two 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 at Shands Hospital in Gainesville, Florida, 3.5 hours away from our home. 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. We were so happy to finally have a diagnosis—even such a disheartening one—that we went out to eat to celebrate the relief of at least knowing there was a REAL illness that I had and that it wasn't just in my head like those uninformed doctors had tried to make me believe.
It's quite ironic that the same year I got sick there was a two-part episode on The Golden Girls entitled Sick and Tired all about Dorothy's struggle with Chronic Fatigue Syndrome and getting a proper diagnosis! You can see the entire episode on Amazon or DVD, but the clip that had every CFS patient cheering when it aired is below:
After my visit with the specialist, I followed his advice to rest as much as I could and let my symptoms dictate my activities. When you get sick like this, you never dream you're going to STAY sick! I had originally tried to continue working—eventually being forced to take a 7-week leave of absence to go into a complete rest to see if I'd get any better. Finally in June of 1991 I had to quit the job I loved so very much. I suffered for 4 more years with no improvement in my symptoms—I could barely remember what it felt like to feel "good."
A few years later—and still no better—I wrote a poem to 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 anymore. 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 even 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 fertility drug Diethylstilbestrol (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 1960s 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 eventually underwent amalgam removals in the attempt to 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; however, 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 at age 36; therefore, we were not able to have children. If I only knew then what I know now… (NOTE: I've since learned that this condition of estrogen-dominance can be alleviated by using natural progesterone. For more information on this, as well as on hormones in general, please visit Dr. John Lee's web site.)
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! Chronic Fatigue Syndrome was something I had no idea how to treat—it left me a "victim." Multiple Chemical Sensitivity, on the other hand, gave me many things I could 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 "neutralized" my symptoms, as well as helping my immune system to stop overreacting so much. (See The Case for Neutralizing (Optimal Dose) Immunotherapy and The Maximum Intradermally Tolerated Dose (MITD) Method of Food Allergy Testing and Immunotherapy: New Concepts 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 nontoxic! 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 nontoxic 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 (using 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 particleboard 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 temporarily "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… (UPDATE: Since so much time has gone by and I have recovered more and more, we have been able to not be quite as strict about these things—with the exception of fragranced products! Those can still do me in very quickly, so if at all possible, we still avoid them.)
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 particleboard 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 nontoxic 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.
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 chemical 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 and not get sick in the first place! I hope my story has given you hope and encouragement if you are sick and enlightenment if you are still healthy!
This is where Jacki's original story of CFS and MCS ended. See below for a major update and "the rest of the story!"
The Journey Continues!
(an update on Jacki's journey towards healing and health)
Over the years, I was tested for Lyme Disease by a few different doctors who suspected it based on my symptoms—many of which overlap those of Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, and Fibromyalgia. The tests always came back negative, so I disregarded Lyme Disease as a possibility. I had no idea that false negatives are quite common with Lyme Disease!
In the summer of 2010 a visitor to our web site read my story and contacted me—quite insistent that she felt I should look into Lyme Disease, even though I kept insisting I'd already been tested and did not have it! At her persistence, I started reading about it online and discovered that indeed out of some 65 symptoms I found on one site—I had 58!!
I contacted my local integrative nurse practitioner and asked about further testing (she had been one of those who'd tested me previously), and she said she had some newer tests available that might be beneficial. She explained that most of the usual testing they do for Lyme Disease is not very accurate and misses a lot of cases. So I went back to her and had the testing done. The day we got the results—which were POSITIVE—felt very similar to when I got my first Chronic Fatigue Syndrome diagnosis! We went out and celebrated, because now we had a new enemy—and this time it was one we could FIGHT!
I learned that for the best possible treatment of Chronic Lyme Disease (which is what I had since it had been there since 1989!) you really need to locate a Lyme-Literate Medical Doctor or LLMD. We found one in Tampa that took our insurance and scheduled an appointment. He did further testing, which also came back positive! I was in shock! Why did all the other testing say I didn't have it over the years?! He explained you have to have the right tests AND the right labs or it will be missed! Most people think you will know if you have Lyme Disease because you will see the tick and/or the typical "bull's-eye rash" that people get (see photo). However, the tick is so tiny (the size of a period at the end of a sentence), and about 60% never get the rash! Interestingly, I went back and looked at our old journals from 1989—the year I got sick—and found that we had gone camping just 1.5 months before all my crazy symptoms started! I felt like this was the final piece of the puzzle! Even though I didn't realize it at the time, I must have gotten bitten by a tick during that trip…
When Lyme Disease is caught early, it can be quite easily treated—as long as the treating physician understands that it takes more than a 2-week course of antibiotics, that is! One problem that occurs is that if someone who's been bitten by a tick and exposed to the Lyme bacteria (Borrelia burgdorferi, a spirochete) gets tested too soon, they will not have had time to build up antibodies and will test negative! At the other end of the spectrum is someone who is tested years later when the bacteria has already "gone into hiding" and the immune system can't detect its presence any more. Unfortunately, this is what happened in my case, and once you've had Lyme for years and years, it is MUCH harder to treat!
My Lyme doctor (LLMD) also detected that I had two of the Lyme co-infections—Babesiosis and Bartonella—so we had to treat those as well in order to get rid of all the problems. I ventured on a long-term course of IV antibiotics—giving myself infusions twice a day for 3 months at a time, trying different antibiotics to find one that might work for me. I had to get PICC line placed in my arm so I wouldn't have to get an IV over and over since this wasn't practical. I was also taking oral antimicrobials for the co-infections. After over a year of trying various treatments, we finally hit on one that worked wonders—Rocephin! After about 6 weeks on this one I literally felt like I'd come out of a 25-year COMA! I felt wide awake, alert, energetic, clear-headed… It was amazing! I went around asking, "Is THIS what NORMAL feels like?!" But sadly, it didn't last long. My doctor wanted to see if I would hold after stopping the treatment, but when we stopped, I crashed again and never have recovered since, despite trying other antibiotics that were even stronger (like Vancomycin). In 2014 my LLMD retired, leaving me with no good Lyme doctor for the time being. We are still considering finding a new LLMD and restarting treatment at some point, but over the past couple of years I had other health problems to deal with—such as 5 surgeries in 2015 (including having both knees replaced)!!
In summary… My journey has been trying, as you can tell! I now believe that everything explained above that weakened my immune system is what left me vulnerable to the Lyme bacteria. My husband has been bitten by ticks MANY times more than I have, and yet he is not sick! I believe that I do still have both Chronic Fatigue Syndrome, as well as Multiple Chemical Sensitivity—but now I believe that these were secondary to the Lyme Disease. In fact it is becoming a widely-held belief that as many as 80% of those diagnosed with Fibromyalgia really have Lyme Disease! Lyme Disease (like Syphilis, the other illness caused by a spirochete) is often called "The Great Imitator" because it mimicks many other illnesses—including Parkinsons, ALS, multiple sclerosis, autism, etc.
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.
To learn more about Lyme Disease—especially Chronic Lyme Disease (which is controversial in the medical field), please see the following web sites:
International Lyme And Associated Diseases Society —ILADS can help you find a doctor
LymeDisease.org – Advocacy, Education, and Research—includes a symptom checklist!
Children's Lyme Disease Network – lots of great information about Lyme Disease (not just for children with Lyme!)
Under Our Skin – a Lyme Documentary (see trailer below)
In the 1970s, a mysterious and deadly illness began infecting children in a small town in Connecticut. Today it's a global epidemic. A real-life thriller, this Academy Award semifinalist exposes the controversy surrounding the growing and hidden epidemic of Lyme disease.
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