Warning: Long story but you must know the FULL picture!
Here is my promised post that talks about what I have found out about allergies in general, my body, what’s happening with me, etc.
I’ll start with some background for those that haven’t known me my whole life. I’m the Girl in the Plastic Bubble (reference to a movie called The Boy n the Plastic Bubble in the 70s, meaning I need to live in one because for 50 yrs this world has been trying to kill me.) Or so it seems.
Normal people have allergies and reactions to things from time to time, maybe a little contact dermatitis or eczema but for me, my reactions have been extreme and unexplainable. I’ve been dealing with an immune system that is totally whack-a-doodle. I’ve had severe nasal and upper respiratory allergies for years and when I say I have dermatitis, I can break out from head to toe in painful rashes and hives that hurt and burn, we’re not talking mild little rash we are talking super-severe. I have never known why this happens. I have been to probably at least 8 dermatologists throughout my life and several primary care docs, and allergists, and in my 20s I tried getting allergy testing and shots for 4 years, and that did nothing for me. I went to an allergy clinic in Atlanta in my 30s and was told I could try shots again but at that time my insurance didn’t cover it and it was hugely expensive, and since I’d tried it before and it hadn’t worked, I’d just throw my hands in the air and try my best to deal with it.
On occasion it had been suggested to me that I might have food allergies but I tried figuring that out on my own and have indeed been chasing that line of inquiry for several years, but never really found a good comprehensive test that gave me any real answers, and the things I was sensitive to, seemed to change every few years.
Alongside all of this, I would have odd things happen, I developed Miniere’s Disease (ringing in the ears, hearing loss and tinnitus) and I once had a rash break out on the bridge of my nose that looked flesh-eating and no doctor could identify it. I would catch any and every thing that came along and seemed to suffer more than most with colds, flus, bugs. All of this, has greatly affected my life, who I am, where I go and what I do. I never feel like I can just wear shorts or short-sleeves, I don’t travel well, etc. I have thyroid disease (under-active) and cannot lose weight well or easily even when on strict diets. I swell and retain water and just have, well TONS of physical challenges on a daily basis. Extremely dry, over-sensitive skin, fatigue, just mess.
So. Here comes 2010 and I decide to go on Nutrisystem, fed up with my inability to lose weight even though I ate healthier than anyone I knew and exercised 3 or 4 times a week, I thought I’d give that a try. Hubby did it, too, and together we lost a bunch of weight (I lost 40 lbs and hubs lost around 90).
Also, note that, although I grew up with pets in the house, after leaving home as an adult I found that my allergies that had been slight before to pets, became more and more severe. On one occasion did I manage to MAKE myself have a dog and I somehow got used to her and she’d only break me out occasionally, and that was our beloved pet Sassy. (We tried with other dogs and it never worked out, but Sassy we had for her whole life.) After she passed away from cancer, by the time we grieved and even thought of getting another pet, I found that my allergies had become even more severe again and I could not be in the same room with any pet without my lungs shutting down, so at that time I just resigned myself to having no pets. (An example, in a recent allergy test, 100 was a large number for a dog allergy and I tested at 300.) I’ve been ordered by all of my docs to stay away from animals. My lungs and skin and sinuses cannot deal.
So this kinda catches you up. Just after doing Nutrisystem in 2010, I remember being on a Z Pack antibiotic, and then about a week later, I began to have odd pain in my hands and feet. Within a couple weeks I became bed-ridden with such intense pain that I literally could not move, could not sleep, feed myself, walk, bathe or even lift my arms. The doctors were baffled.
I went to a rheumatologist and he did all sorts of tests and seemed to just scratch is head and this is when they gave me pan meds and there are a few weeks of my life that I barely remember. I went to a naturopath also who tried to help me with various things, expensive natural treatments, etc, while the doc still scratched his head. I finally went to get a second opinion from a second rheumatologist in Atlanta.
By the time I saw her, I had full-blown RA. I now know and understand that whatever that was that happened initially was NOT RA, but triggered it in my body.
So, nine years go by of me trying out these RA meds, I settled on Rituxan, which is a high-powered biologic which represses the immune system, because, basically, my immune system had become so whacked out that it was attacking every muscle and joint in my body. I took that by infusion (IV) every six months up until October ’18 was the last infusion.
Around this time, I became super ill in my upper respiratory system, chronic ear infections and sinus infections and it moved into my lungs and I was sick for a total of nearly 2 years straight, meaning no antibiotic would keep it at bay (as soon as I’d finish it, the infection would return) and the antibiotics made my face red and hot. They also gave me steroids over and over again, and as soon as I was off them, I was sick again. This was the time frame where I began to what to move to another state/city out of desperation, thinking maybe my allergies were just so bad in Atlanta that I needed to be anywhere else. They do have a horrible air quality there as well. We had visited Central Florida and I began to research areas that were les touristy but near the ocean and we found Palm Coast (where we now live).
Meanwhile my doctors were all at a loss and saying “We cannot continue to give you antibiotics and steroids constantly.” Yet they did not know what to do for me or how to help me- at all. I just wanted help, hope, health, I set my goal to make 2019 my year of Chasing Health. Hubs talked to his boss and got the okay to move out of state and work from home full-time which was HUGE and a big green light.
We moved and at that time (almost exactly one year ago) I was on 3 breathing treatments a day, several oral meds, rescue inhaler, steroid inhalers, etc. Began finding docs here, they by and large thought and said the same things. Here are some steroids, here are some antibiotics, we can’t keep giving you these. But no answers as to what I should do. I was at the end of my rope and feeling utterly hopeless. I assumed I’d just have to keep taking these drugs until I eventually died.
I started eating super strictly and healthy (even more than I already had been—I’d been off white sugar and flour for some time, no soda, no sweets, no fried or fast foods etc, for some time). I began to experiment with foods and try to gauge reactions, writing things down, etc. I kept up exercising but here in Florida (I had sold my treadmill for the move) but I would go outside and walk, we go to the ocean every weekend and walk near the water and sit and enjoy the ocean and the air, etc. The air quality, temps, etc are far better here, and for likely the first time in my life, I began to enjoy being outside. I was having horrible allergies anyway so I didn’t let that stop me from going out and park-walking, etc. (Some of the docs did suggest hiding up inside the house and never going outside where others told me to get out and get fresh air.) Fresh air has been amazing for me BTW.
So then. After finding my first RA doc here, he told me I wasn’t having any symptoms and to come see him if/when the RA seemed to e flaring and we’d take care of it but I was basically in remission for RA. This happened almost immediately. The 6 month infusion I’d taken in October wore off but I felt fine. Awesome sauce. I felt I was making some little progress. I finally convinced myself to find one more allergist and pursue allergy testing and shots or whatever they suggested – again.
Enter Dr. Dantini. So, in August I had his patented food allergy blood test which tests for more food allergies than any doc or test I’ve ever found. I have over 20 things I now have to avoid. Been doing that (to the degree that one can KNOW what is in everything ya eat- eating out or whatever), and I experienced some measure of relief. Of the 20 items, corn and yeast products seem to be the worst things for me and make me break out head to toe and start clawing my skin off. But I have cut them all out. Y’all may remember me saying that COFFEE, my beloved java juice, was on this list. I cut it totally out for 6 weeks or so, then “challenged” it (where I try having something on my AVOID list and seeing how I react.) I had stomach acid-like reactions but didn’t notice any immediate skin reaction-but sometimes it takes days. I still don’t know for sure if coffee is affecting my skin, but staying away for the most part to be safe, at least for now. It is my ONE thing, so I will keep trying to get the best organic shade-grown low acid coffee and having it as a treat, but will wait til I am past this last EPISODE which I am about to tell you about. So, I also got environmental (scratch-tests) done and a few things popped there. Pets, and ragweed are probably the worst from that angle. I began taking allergy shots in August twice a week.
Now, by Thanksgiving, we had decided to go to see our kids in GA and VA and eat our holiday dinner in VA with our son and his family there. I was already having some off and on itching before we left. I tried to explain my allergies to my sweet DIL but in the end, I said don’t worry about it too much, it’s one meal, I’ll cheat, whatever. How bad could it get??? (Mistake!)
By the time I was on my way home, I was super-dried out from the cold harsh weather, my skin was chapped and raw, I was broke out in rashes and hives by the time we got back to our hotel in SC on the way. I was in tears. I got home and saw my dermatologist PA who freaked and biopsied my skin (by this time it looked like I had radiation burns.) The next day I saw Dr. Dantini the allergist and he explained that the missing of 2 shots, the change in the environment, the little cheats here and there with coffee and the other things I’d ingested knowingly and unknowingly along the way, had swarmed and had caused this massive reaction. I had to get on steroids. He also said “There is something else afoot here and we need to find out what it is. Some underlying illness or disease.” We discussed that horrible incident back in 2010 when I was bedridden and he put in for a huge battery of blood tests. He just knew that there was some underlying cause, virus or bacteria at play.
NOW. This brings us current. Yesterday, I got my blood test results. I have EBV and Fifth’s Disease. These are not rare diseases and are in the same family or category of DNA diseases as Chicken Pox, Shingles, and several others that ALL of us get exposed to every day. But knowing I had these turned on a lightbulb for him.
He explained that about 1/3 of all humans on planet earth do not have enough Natural Killer Cells in our guts (our immune cells). For whatever reason we 100 million or so folks, do not have them. So, if I (who do not have them) get exposed to these common viruses, my immune system FREAKS. It cannot handle it. I begin to exhibit whacked out allergic-reactions to tons of things, and the things I react to can change at will. My current allergy-test results are a good indicator of WHAT I am reacting to right NOW. But my system, and those like me (and he is the same) cannot deal with these viruses, we are not equipped. The guy next to me, like my husband for example, exposed to the same viruses but has ZERO reaction.
There’s meds for this. I’m on 2 anti-viral meds. Common anti-viral meds. He says I WILL get better.
JAW dropping AHA moment. For the first time in fifty years of suffering, I have hope. (The molecules I have mentioned before that are all natural that I take also help build immune system and also work on these Natural Killer Cells.)
WTF. WHY DID NOBODY EVER TELL ME THIS IN FIFTY YEARS??!! I kept shouting this in my car on the way home. I have hope, y’all. And it’s a powerful thing.
It is my truest hope that this info will help you or someone you know, too.