posted
When I was six I got a strain of pneumonia that didn't respond to regular antibiotics; if a new experimental antibiotic hadn't just come out the pneumonia would have killed me.
When I was 47 I got stage 1 prostate cancer; surgery to remove it was successful; my urologist told me he regarded me as "cured" from cancer. It hasn't recurred.
When I was 52 a cecal volvulus (twisted intestine)would have killed me if my wife hadn't gotten me to the ER promptly.
Today I'm 57. I have an ever-increasing number of delayed food allergies. The only things my doc is aware of that are effective against delayed food allergies are vitamin C and quercetin/flavonoids. I'm allergic to both. Other antihistamines don't help these types of allergies because histamine isn't involved with them.
An abundance of recurrent gut infections (c. diff, h.pylori, parasites, and all the usual players), in combination with digestive deficiencies (low pancreatic enzymes, stomach acid, etc.)makes me become allergic to new foods all the time.
I'm running out of food to eat that doesn't give me these kind of reactions, which are burning headaches that last for several days afterwards.
I've already sensitized to most ordinary foods. There's a website (blackwing.com) that sells a bunch of unusual meats, including goat, camel, kangaroo, and others. There's a company (Dr. Adorable)on Amazon.com that sells all kinds of unusual oils. When I sensitize to these meats and oils, and I will, the headaches will be too much.
I spend every minute of every day aware, at the back of my head, that my time is limited and counting down. Every time I do something with my wife, I think it may be the last time.
There are five stages of grief -- denial, anger, depression, bargaining, and acceptance. As I run out of foods, I find myself constantly cycling between those stages. I may spend a morning angry at my body and my situation -- a form of denial, followed by an evening in tears at the thought of my 35-year old relationship with my wife ending, and the entirety of the next day overwhelmed by pain intense enough that accepting death is not only easy but dying is all I want if nothing else will stop the pain.
It's human nature not to appreciate something until you lose it. I'm withing sight of losing my life, and I've never appreciated it more. All I want is another 20 ordinary years with my wife and our dogs, and I can't have them. For me all stages of grief are bittersweet.
GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
GVS
It seems you have had a guardian angel watching over you through the years. Ask him/her for help, they never leave you side.
I’m so very sorry for your suffering. Life is so precious.
I found this for you. It’s called FARE (Food Allergy Research and Education). There are support groups, clinical trials, health providers, current research, treatments and much more. You respect and treasure life and deserve to have one. Sending healing wishes.
posted
P.s. -- Thanks, Lymetoo, for suggesting Nasalcrom on past posts.
Although it is expensive -- as someone with a Medicare Advantage plan, it puts me in the "doughnut hole" from May forward every year -- it helps my immediate allergies, the ones associated with histamine, a lot. It isn't a magic bullet, but it makes a difference that justifies the expense. It's powerful juju.
If I could find a couple more things like it, my immediate allergies would calm down a lot, and I could tolerate more of the supplements that help my digestive and immune problems.
The catch-22, all these years, basically since 2003 when I got Lyme, is that my digestive and immune problems make me allergic to so many things that I can't take the things I need to take to turn around my digestive and immune problems.
GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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posted
P.P.S. -- And thanks, Bonnie, for your kind and supportive posts. I hope the website offers useful info. -- GVS
Posts: 242 | From durham, nc | Registered: Oct 2016
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posted
Hi, GVS... I hope you find the key to how to manage this problem. There are thousands on the MCAS sites on FB that are down to 4-5 foods and they continue to be "OK."
Some resort to feeding tubes, but many things can be done to save your life. Don't despair just yet!!
So are you referring to nasalcrom or gastrocom?
Cromolyn sodium is gastrocom.
Nasalcrom (a nasal spray) is over the counter and if you aren't doing that one, it might help a little.
I take antihistamines and Pepcid twice a day so I am able to eat. You could also ask your doctor about ketotifen. It helps patients gain foods back in many cases. You have to get it compounded and it's way cheaper than cromolyn sodium.
Enjoy every minute of life .. just as God intended us to do, because not one of us is guaranteed another day.
God bless!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Lymetoo, I'm also interested to hear more about what you know about ketotifen helping.
Re the food allergies, I'm wondering whether you could benefit from doing some research and communication with gut experts. If you're interested, let me know, since I watch health summits, including having watched a lot of gut ones, and would have a lot of expert referrals for you.
In general, I'd say, don't give up! Keep looking, keep reaching out, including to a vast community of people involved in the health field. Like ask people for referrals to people they think might have some useful info. We'll all trying to solve our health puzzles.
Posts: 13116 | From San Francisco | Registered: May 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
GVS, There's a product that might (or might not) offer you major help. It saved a friend's life, no exaggeration, but that's another story because her symptom were not the same as yours -- even more serious, actually -- namely painful bloody diarrhea for which she had to take long-term steroids for temporary relief, with no hope of any long-term cure in sight.
My friend is totally well now, and has remained well without relapse for probably 5-10 years, after she decided to take a chance on an elemental liquid diet which she stuck to strictly for over a year. In fact, she didn't even have to quit her job although she did take a nap in her office daily for ~6 months.
This is not a prescription product, but perhaps your insurance might help with cost if you were to get an Rx for it. (There are other similar Rx liquid diets out there, but they taste awful and aren't cheap either.)
My friend did not eat any solid food at all for at least a full year although her symptoms were cured after about 6 months because she was too afraid of relapse.
The one exception was that she bought an electric juicer and drank freshly made juices (no fiber at all, discard or compost it) from organic veggies which they grew in their garden, added to a base of fresh carrot juice from carrots bought at our local farmer's market.
Here's another link to a companion website where you can learn even more about this dietary program. (I have no financial connection whatsoever to this product.)
You don't recognize me since I'm not a frequent poster here at LymeNet anymore because our daughter is a recovered Lyme patient without relapse for >10 years, and we are both so burned out on Lyme that neither of us wants to think about Lyme anymore.
Also, do not overlook the possibility of celiac (the genetic form of gluten intolerance) which is life-long once it has been triggered. No one knows what triggers celiac, but I'm guessing that Lyme could easily be one of the culprits for activating the celiac gene, based on our daughter's experience and her eventual full recovery.
PS -- I'm editing to add that our daughter never used Absorb Plus during her Lyme recovery because we did not know about it back then, but she keeps it on the shelf now for occasional use whenever she starts having any minor GI problems at all.
Prior to her recovery from Lyme and celiac, she suffered severe mold allergies, MCS bordering on MCAS for which she took gastrocrom, and all of the other cerebral symptoms of neuro-Lyme, which are not uncommon in celiac patients also, including severe depression with suicidal ideation.
These distressing symptoms return immediately if she ingests even a tiny trace of gluten accidentally, so she is never tempted to cheat on her 100% strictly gluten-fre diet.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
GVS.. Ketotifen makes many people sleepy but some say it solves so many problems that they feel BETTER. I have not tried it yet.
Robin .. I don't listen to any of those any more because their recommendations always include herbal treatments. They have never addressed salicylate sensitivity, that I know of.
TXLymeMom .. I will check out the items you posted. Thank you!
PS to GVS .. are you SURE to take the gastrocrom on an empty stomach and wait 30 minutes before eating? You take it with WATER only and in 8 oz of it?
**editing to add: TXLM .. I remember checking out that product before. I can't do artificial flavorings**
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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