I don't know if this might be helpful to you. Sometimes we can get sidetracked with what we think is the correct diagnosis, and miss something else entirely. I had long-term poisoning from formaldehyde fumes (from a new sofa we purchased), that led to a host of autoimmune problems. The formaldehyde isn't necessarily important (although there are several class-action lawsuits from its use in consumer goods), but what IS important is a trigger event...perhaps your vaccination.
In my case, the formaldehyde "awakened" a latent genetic marker for celiac disease, and I've suffered weird, unrelated symptoms for twelve years until discovering this connection just recently. Other people have been crippled by things like carbon monoxide exposure, which led to chronic autoimmune disorders.
I also wonder if it might be possible you were told you were given an HPV vaccine, but given something else entirely as part of a covert medical trial? Are your medical records sealed? Maybe something to look into.
Just trying to help you think outside the box. Seems like you've given this enough time to respond to the therapies you've described...perhaps it's time to think in another direction? Best wishes.
The most serious of the symptoms I began experiencing was chronic migraine. This was back around 2008 (?) or so, when the gluten-free diet began becoming popular. I was so desperate for a solution, because these migraines were constant and didn't respond to most of the usual medications, that I tried going gluten-free at the time. There was no benefit at the time, but what I didn't realize was that I was poisoning myself constantly, daily, on that darn sofa!
I don't travel away from home that often, but after a couple of years, I noticed that I began feeling a little better when, on the rare occasion, I was away from home for a few days. It was then that I noticed a strange odor coming from the sofa -- especially when I had been sitting on it for a few minutes and warming it up with body heat. I purchased a test kit from Amazon, sent it in to the lab for testing, and it verified a dangerous level coming from the sofa...both from the wrinkle-free plush fabric and the polyethylene foam.
I tore the sofa down to the frame and replaced the materials, rebuilding it, so I removed the formaldehyde source. But, as I mentioned, the formaldehyde triggered the latent genetic marker for celiac. There are two types of celiac -- "full-blown" disease, and something else called "silent celiac." Silent celiac is sinister, and no doctor ever suspected or suggested this diagnosis. The migraines over the past decade since the formaldehyde discovery have been crippling, but I also had two other, weird symptoms also associated with silent celiac. One of them is an unexplained chronic rash that failed to respond to any kind of creme or ointment, and the other is/was painful sores inside my mouth and gums. If you are familiar with the diagnosis of ME/CFS, this was the tentative diagnosis given me by a couple of physicians, because I also experienced fatigue and osteoarthritis. I have been on low-dose naltrexone for over ten years, and it helps a bit with my energy and pain level.
I went gluten-free AGAIN six weeks ago because a new doctor had the foresight to do a celiac DNA lab, and my migraines and other symptoms are mostly gone, and I expect further improvement as time goes on. (The rash and sores inside my mouth have also resolved.) I've also discovered that, among other things, I have developed an extreme sensitivity to the airborne neurotoxin from Red Tide, and we have had the worst Red Tide season in history here. It causes migraines so bad that my powerful medications are nearly ineffective.
Also, the formaldehyde caused a couple of troubling food intolerances where none existed before. Tomatoes and yeast will also trigger migraines worse than usual.
You mentioned "eye problems." If, by this, you mean blurry vision, or crust/"sand", this is an indication of a hyper-immune reaction. The tear ducts are one such location where white blood cells are excreted, and they can cause a "thickening" of the mucous layer over the eye causing some blurriness.
It's extraordinarily difficult to summarize all that I've experienced and learned to try to overcome this. Hopefully something here is helpful.
I'm 60, myself. I, too, occasionally had an extreme sensitivity on the inside of my forearms near my elbows, where it was painful for anything to even brush them lightly. Came and went periodically. Other symptoms that told me I had an immune system overload coming on were hot flashes, as well as a "malar rash" (flushing) across my nose and cheeks. Usually, I had a very difficult time regulating my temperature, and was frequently chilled. My normal basal temperature is about 97F. These symptoms continued chronically for years after getting rid of the formaldehyde, so, I believe it's safe to say they were a neurological component of the celiac.
I sleep on a 4" memory foam pad, that I've had for many years. I had it tested, and it's benign. I know what you're saying about them making the bed more comfortable! It is indispensable for me. Be advised that there are different grades of memory foam. A good pad might cost in the $400-500 range. The cheaper ones aren't really memory foam, and might be more prone to off-gassing toxic compounds. If you had an expensive one, it's too bad you threw it out before having it tested...it may have been OK. You can buy latex foam pads which are completely safe...unless you have a latex allergy.
My diet is so limited right now, I'm having substantial difficulty finding safe things to eat, and to get enough calories each day. (But I'm still overweight by 25 pounds -- figure that one out!!) Once you eliminate tomatoes, yeast, MSG, and gluten, you've eliminated most of the available prepared foods for easy meals. Unless you're powerfully motivated, I might not recommend going gluten-free without something else to go on. You'll have to give it at the very least six weeks. Scan over this webpage, and see if anything rings a bell: https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/ Any doctor can order the DNA test, and it's very simple...any lab can do it. However, just because the DNA test may come back positive for the marker, does not mean you have celiac. The only confirmed method of testing for celiac is the biopsy, which requires sedation and an invasive procedure. If you've been gluten-free, the biopsy method will come back negative.
That said, if you ARE motivated, and want to stay away from doctors and procedures as much as possible, then going gluten-free will give you basically the same information empirically...especially if you end up feeling better over time. There is no treatment for celiac other than going gluten-free. If you have migraines, like me, or other extreme symptoms, there are medications to manage them. One very safe medication that most doctors aren't aware of, for this off-label application, is low-dose doxepin. At 10-20mg daily, it has a completely different profile than its normal use. Used at this dosage it is the most powerful antihistamine known, and in 2-3 days will shut down a hyper-immune reaction. As with all antihistamines, doxepin is prone to tolerance, so, if you do use it, use it sparingly only when necessary.
If you do discover that you have some sort of gluten sensitivity, you may benefit from taking the Qunol liquid CoQ10 (orange-pineapple flavor). I began using it because it is supposed to help with energy and cardiac issues, but very soon after starting, it cured a chronic "constitution" issue I've had for years. I had changed nothing else during that time, so I'm sure it was the Qunol.
I can't remember if I mentioned the chronic rash I had, just below my sternum. My dermatologist had prescribed a cream for candida control (Ketoconazole), which helped somewhat, but never fully resolved it. Within 10 days of going gluten-free, it had completely resolved.
The constellation of possible symptoms for celiac is massive...I've read up to 200 possible symptoms. My recommendation to you would be the same as to the OP...avoid concentrating on a single diagnosis until you're positive, and be open to consider all possibilities. This article describes some of the potential neurological factors: https://kresserinstitute.com/gluten-killing-brain/
I love Italian food, and that has been one of the most painful adjustments I've had to make. However, there are substitutes. I make a marinara sauce out of carrots and beets and spices, which is almost exactly like tomato marinara. Gluten-free pasta choices are limited at this point, but my favorite is the Tinkyada fettucine brown rice pasta...it is excellent. I also make a "no-mato" ketchup. These sauces freeze well, so I make large batches and freeze them into meal-sized containers.
With respect to your spinal issues, I have lost my two bottom discs, and have been investigating surgical intervention. Nothing here happens quickly! I have seen four orthopedic surgeons over a period of two years, and they need all kinds of expensive and involved tests. I've had X-rays, MRIs, CAT scans, and a discography. One surgeon, when he found out I had some sort of autoimmune issue, wouldn't continue consulting until I had a comprehensive skin allergy test to eliminate the possibility of me being allergic to the metals they use in the implants. If you do have a metal sensitivity, they now have a material called "PEEK" which is a bio-safe plastic for rods, screws, etc. Not all surgeons are aware of this material, and not all areas are covered by the sales reps who make it available to the doctors to use. Metal sensitivity complications is a dirty little secret in the orthopedic surgery business.
I have heard about the med-beds, too, and it seems too fantastic to be real. That would truly be remarkable! Let's keep our fingers crossed...
So sorry to hear of your health difficulties!
I don't know if this might be helpful to you. Sometimes we can get sidetracked with what we think is the correct diagnosis, and miss something else entirely. I had long-term poisoning from formaldehyde fumes (from a new sofa we purchased), that led to a host of autoimmune problems. The formaldehyde isn't necessarily important (although there are several class-action lawsuits from its use in consumer goods), but what IS important is a trigger event...perhaps your vaccination.
In my case, the formaldehyde "awakened" a latent genetic marker for celiac disease, and I've suffered weird, unrelated symptoms for twelve years until discovering this connection just recently. Other people have been crippled by things like carbon monoxide exposure, which led to chronic autoimmune disorders.
I also wonder if it might be possible you were told you were given an HPV vaccine, but given something else entirely as part of a covert medical trial? Are your medical records sealed? Maybe something to look into.
Just trying to help you think outside the box. Seems like you've given this enough time to respond to the therapies you've described...perhaps it's time to think in another direction? Best wishes.
The most serious of the symptoms I began experiencing was chronic migraine. This was back around 2008 (?) or so, when the gluten-free diet began becoming popular. I was so desperate for a solution, because these migraines were constant and didn't respond to most of the usual medications, that I tried going gluten-free at the time. There was no benefit at the time, but what I didn't realize was that I was poisoning myself constantly, daily, on that darn sofa!
I don't travel away from home that often, but after a couple of years, I noticed that I began feeling a little better when, on the rare occasion, I was away from home for a few days. It was then that I noticed a strange odor coming from the sofa -- especially when I had been sitting on it for a few minutes and warming it up with body heat. I purchased a test kit from Amazon, sent it in to the lab for testing, and it verified a dangerous level coming from the sofa...both from the wrinkle-free plush fabric and the polyethylene foam.
I tore the sofa down to the frame and replaced the materials, rebuilding it, so I removed the formaldehyde source. But, as I mentioned, the formaldehyde triggered the latent genetic marker for celiac. There are two types of celiac -- "full-blown" disease, and something else called "silent celiac." Silent celiac is sinister, and no doctor ever suspected or suggested this diagnosis. The migraines over the past decade since the formaldehyde discovery have been crippling, but I also had two other, weird symptoms also associated with silent celiac. One of them is an unexplained chronic rash that failed to respond to any kind of creme or ointment, and the other is/was painful sores inside my mouth and gums. If you are familiar with the diagnosis of ME/CFS, this was the tentative diagnosis given me by a couple of physicians, because I also experienced fatigue and osteoarthritis. I have been on low-dose naltrexone for over ten years, and it helps a bit with my energy and pain level.
I went gluten-free AGAIN six weeks ago because a new doctor had the foresight to do a celiac DNA lab, and my migraines and other symptoms are mostly gone, and I expect further improvement as time goes on. (The rash and sores inside my mouth have also resolved.) I've also discovered that, among other things, I have developed an extreme sensitivity to the airborne neurotoxin from Red Tide, and we have had the worst Red Tide season in history here. It causes migraines so bad that my powerful medications are nearly ineffective.
Also, the formaldehyde caused a couple of troubling food intolerances where none existed before. Tomatoes and yeast will also trigger migraines worse than usual.
You mentioned "eye problems." If, by this, you mean blurry vision, or crust/"sand", this is an indication of a hyper-immune reaction. The tear ducts are one such location where white blood cells are excreted, and they can cause a "thickening" of the mucous layer over the eye causing some blurriness.
It's extraordinarily difficult to summarize all that I've experienced and learned to try to overcome this. Hopefully something here is helpful.
I'm 60, myself. I, too, occasionally had an extreme sensitivity on the inside of my forearms near my elbows, where it was painful for anything to even brush them lightly. Came and went periodically. Other symptoms that told me I had an immune system overload coming on were hot flashes, as well as a "malar rash" (flushing) across my nose and cheeks. Usually, I had a very difficult time regulating my temperature, and was frequently chilled. My normal basal temperature is about 97F. These symptoms continued chronically for years after getting rid of the formaldehyde, so, I believe it's safe to say they were a neurological component of the celiac.
I sleep on a 4" memory foam pad, that I've had for many years. I had it tested, and it's benign. I know what you're saying about them making the bed more comfortable! It is indispensable for me. Be advised that there are different grades of memory foam. A good pad might cost in the $400-500 range. The cheaper ones aren't really memory foam, and might be more prone to off-gassing toxic compounds. If you had an expensive one, it's too bad you threw it out before having it tested...it may have been OK. You can buy latex foam pads which are completely safe...unless you have a latex allergy.
My diet is so limited right now, I'm having substantial difficulty finding safe things to eat, and to get enough calories each day. (But I'm still overweight by 25 pounds -- figure that one out!!) Once you eliminate tomatoes, yeast, MSG, and gluten, you've eliminated most of the available prepared foods for easy meals. Unless you're powerfully motivated, I might not recommend going gluten-free without something else to go on. You'll have to give it at the very least six weeks. Scan over this webpage, and see if anything rings a bell: https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/ Any doctor can order the DNA test, and it's very simple...any lab can do it. However, just because the DNA test may come back positive for the marker, does not mean you have celiac. The only confirmed method of testing for celiac is the biopsy, which requires sedation and an invasive procedure. If you've been gluten-free, the biopsy method will come back negative.
That said, if you ARE motivated, and want to stay away from doctors and procedures as much as possible, then going gluten-free will give you basically the same information empirically...especially if you end up feeling better over time. There is no treatment for celiac other than going gluten-free. If you have migraines, like me, or other extreme symptoms, there are medications to manage them. One very safe medication that most doctors aren't aware of, for this off-label application, is low-dose doxepin. At 10-20mg daily, it has a completely different profile than its normal use. Used at this dosage it is the most powerful antihistamine known, and in 2-3 days will shut down a hyper-immune reaction. As with all antihistamines, doxepin is prone to tolerance, so, if you do use it, use it sparingly only when necessary.
If you do discover that you have some sort of gluten sensitivity, you may benefit from taking the Qunol liquid CoQ10 (orange-pineapple flavor). I began using it because it is supposed to help with energy and cardiac issues, but very soon after starting, it cured a chronic "constitution" issue I've had for years. I had changed nothing else during that time, so I'm sure it was the Qunol.
I can't remember if I mentioned the chronic rash I had, just below my sternum. My dermatologist had prescribed a cream for candida control (Ketoconazole), which helped somewhat, but never fully resolved it. Within 10 days of going gluten-free, it had completely resolved.
The constellation of possible symptoms for celiac is massive...I've read up to 200 possible symptoms. My recommendation to you would be the same as to the OP...avoid concentrating on a single diagnosis until you're positive, and be open to consider all possibilities. This article describes some of the potential neurological factors: https://kresserinstitute.com/gluten-killing-brain/
I love Italian food, and that has been one of the most painful adjustments I've had to make. However, there are substitutes. I make a marinara sauce out of carrots and beets and spices, which is almost exactly like tomato marinara. Gluten-free pasta choices are limited at this point, but my favorite is the Tinkyada fettucine brown rice pasta...it is excellent. I also make a "no-mato" ketchup. These sauces freeze well, so I make large batches and freeze them into meal-sized containers.
With respect to your spinal issues, I have lost my two bottom discs, and have been investigating surgical intervention. Nothing here happens quickly! I have seen four orthopedic surgeons over a period of two years, and they need all kinds of expensive and involved tests. I've had X-rays, MRIs, CAT scans, and a discography. One surgeon, when he found out I had some sort of autoimmune issue, wouldn't continue consulting until I had a comprehensive skin allergy test to eliminate the possibility of me being allergic to the metals they use in the implants. If you do have a metal sensitivity, they now have a material called "PEEK" which is a bio-safe plastic for rods, screws, etc. Not all surgeons are aware of this material, and not all areas are covered by the sales reps who make it available to the doctors to use. Metal sensitivity complications is a dirty little secret in the orthopedic surgery business.
I have heard about the med-beds, too, and it seems too fantastic to be real. That would truly be remarkable! Let's keep our fingers crossed...