I haven't been here in a long time, but am really hoping someone can help me. I've had food allergies for a long time, but over the past year I've been developing new ones constantly. This past month and a half, I've been bedridden since having a new allergy that put me into a major seizure.
Since then, my immune system is going haywire. It rejects nearly everything that I eat, and I've been living on little more than plain chicken since. I'm dropping weight drastically, and can barely get out of bed to get to the bathroom. I'm so weak that my legs wobble.
My prior LLMD relocated some time back and there isn't anyone else in my area. I'm too weak to travel and don't have any help to do that anyway. I am very scared that I'm going to die soon if I can't find something concrete to get my immune system functioning again.
I've been seeing a doc in my area who specializes in environmental illness, and is somewhat aware of Lyme and has very unorthodox views about medicine (which is usually a good thing for us) - and he deals with food allergies and sensitivities in most of his patients. He has run numerous tests, and doesn't seem to have anything to offer.
I'm hoping that someone on here has experienced this before and has overcome it, and can share his/her experiences and tell me what worked.
Thank you!!!
Posted by Razzle (Member # 30398) on :
You've become a universal reactor (something an environmental medicine doctor should be familiar with). I'm also one.
Have you had methylation testing done?
In my case, I believe the combination of Lyme/coinfections and methylation issues has caused me to become hyper-reactive to many things (sulfites, gluten, many other foods, many chemicals, fragrances, etc.) and prevents the ability of my body to re-learn how to tolerate things again...
The only way to fix this in my opinion is to address both the methylation issues and the infections simultaneously, and once these two issues are under better control, then pursue allergy desensitization (through BioSET, NAET, provocation-neutralization, sublingual, EDS, etc.).
But this is just me - I don't know if this applies to anyone else.
Other things to consider:
I know of others who have discovered parasitic and/or fungal issues causing their body to respond inappropriately to foods.
Treating the parasites and/or fungal issues (Candida, etc.) seemingly decreases their reactivity to foods and/or enables them to successfully be desensitized to those foods.
Mold growing in the home and/or workplace can sometimes cause food allergy problems...cleaning up the mold in one person's home caused their allergic disease to completely disappear (including all their food allergies).
Some find they have terrible times with allergies until they stop eating gluten (wheat, rye, barley, oats). And then after a while they find they no longer react to other foods.
Also, digestive enzyme insufficiency (pancreatic) can lead to issues with food intolerances or allergies. In this case, taking digestive enzymes with meals may help.
Probiotics are also very important for supporting a healthy immune response to one's food/environment. I can't eat dairy products unless I'm also taking probiotics. So if you aren't already taking probiotics, it would be a good idea to discuss this with your LLMD.
I hope this helps...take care,
Posted by jenni-bunnies (Member # 34506) on :
Hi Razzle, and thanks!
I've been fighting Lyme for around 40 yrs, so it's not a surprise that my immune system is about done in.
What is a methylation test? I tried looking it uip online but didnt understand the little bit I saw. I had a ton of blood tests rrun at the new doc, but don't remember if that was on the list.
I know that I have troubble with candida, but I don't think it's the cause as it's been worse years ago. I do take a probiotic daily.
The tough part is that I don'tt have much time left to figure this out. My body is literally starving to death, and I get worse every day.
I didn't eat gluten for aaround 3 or 4 weeks, then one of the foods I tried eating were some organic graham cookie snacks since I had them and didn't have to get up to get them. I ate them fine for 5 or so days, then last night I had a bad reaction to just a small handful of them. Thgey were the one thing that had slowed down the weight loss a little bit.
Not sure what else to try. I don't want to die from this. Anyone else have expereicne wiht this?
Thansk,
Jenni
Posted by tickled1 (Member # 14257) on :
You need the GAPS diet to heal your stomach and rid abnormal flora/yeast to stop the allergies and B Supreme by Designs for Health would help with methylation issues.
Do you have anyone nearby to help you?
When I could barely eat anything and was losing weight a huge life saver for me was "Amy's" gluten freee, soy free, dairy free "Mac and Cheez". High calorie and has coconut oil which is soothing for GI.
Posted by jenni-bunnies (Member # 34506) on :
Thank you, Tickled. I have no help and right now I am allergic to everything. Literally. Plain boiled chicken breast causes the least reaction so I've been eating a little of that each day. I react badly to everything else - seizures, heart palpitations, trouble breathing.
I've been allergic to coconut for several months now, so that product would be bad anyway. But right now I'm trying to only try pure single ingredient foods when I do try something so I know exactly what I'm reaacting to.
I am so desperate for a solution to this so I can eat!!!
Thank you~
ps- still trying to find out what hte methylation is.
Jenni
Posted by Spindleshanks (Member # 32556) on :
Pm sent.
Posted by Kudzuslipper (Member # 31915) on :
I know this isn't going to popular, but if you really think you are going down hill as fast as you are, maybe you should go to the hospital where they can give you the nutrients you need (that get rendered to be non allergenic) Introveiniously. And maybe you even need an immune suppressant as horrible as it is for Lyme. You alllergic response to everything may take precedent right now.
Did you start doing anything differently 6 weeks ago? New meds? Anything that could have thrown you into this spin?
Good luck to you. Keep us posted.
Posted by mlg (Member # 35383) on :
Hi,
Have you tried histamine meds such as phenergan or benadryl. I couldn't tolerate or was having a bad reaction to certain foods such as milk, have lost like 60 lbs in the last year. When I added histamine meds dropped to 1 antibiotics and did more natural things IR, ND, or accupuncture. It seemed to help. Also garlic. Probably treating for parasites.
Posted by pug7 (Member # 36995) on :
I am heading where you are. I can still eat some foods, but the list of those I cannot eat is long, and new ones pop up all the time. I eat a lot of rice and rice cereal, and for a variety or reasons, have a bad yeast thing going right now, so without the rice, I have little to eat.
Also, fragrances etc.and most meds, whether injected, inhaled or by mouth.
It is scary. I try not to think of potential scenarios that could be dangerous, like an asthma attack from an allergen, when I can no longer tolerate inhalers.
I don't have anything to offer. I wish I still had good health insurance. If you do, then try to find a functional medicine doctor who is good with allergies (integrative, naturopathic, but we liked an MD who called himself "functional" and was covered by some insurances).
Treating yeast does help, but most docs will give you 3 days of fluconazole, tops. I just got 10 days, and am doing probiotics, garlic and dietary changes as well.
Posted by jenni-bunnies (Member # 34506) on :
Thank you all!
I did go to the hospital, and was having a major seizure when I arrived. The seizure had lessened but was still there when the doctor came in, and all they would do was draw blood, do a CBC and basic mineral panel, and sent me home. I've given up on them.
I cannot take an immunosuppressant, I took one dose of a steroid some years back and I know they suppress the immune system, I was sicker after that one dose than I'd ever been at that point. I think it would kill me at this stage of Lyme.
I have very bad reactions to Benadrayl, but I do take Allegra - when the reactions to foods were less severe, the Allegra would stop them, but now it just takes a bit of the edge off. The environmental doc gave me something called tri-salts, and told me that if I had a reaction I should mix a bit of the powder in water and drink it, and the reaction would stop. That has not worked at all, and today he told me over the phone that no, it works for everyone. I felt that he didn't believe me. Frustrating!!!
Oh, and I've been highly allergic to garlic for a couple of years. Sad, because I used to love garlic!!!
I've been doing probiotics for a long while, and before this worsened 6 weeks ago I was taking oregano oil for candida, which kept it in check. Siince I'm reacting to everything now, I'm afraid to take it.
The environmental doc wants me to start allergy testing that would take 2-3 days, starting Monday. But all they would tell me is that it's expensive, no actual pricing, no specific timing which I need for lining up somoene to get me there, and I'm feeling very skeptical of this doc.
No fun!!! At least the reaction from Wed evening is lessening now, 52 hours later!
Thanks~
Jenni
Posted by Pocono Lyme (Member # 5939) on :
Hi Jenni,
I know of no food allergies that I have but since being infected and my immune system tanking, I have plenty of environmental allergies.
Such a strong reaction, the allergist won't do shots due to risk of anaphylaxis/death.
I looked into Gigi's post on allergy/immune but the brain can't manage the info.
I most probably am going to do SLIT in the future. Sublingual Immunotherapy. Another method although I don't know if that's for food allergies or not.
Good luck. Allergies are Miserable.
Posted by WPinVA (Member # 33581) on :
Hi Jenni -
There are formulas called Elecare and Neocate that are specially formulated for people who are allergic to all foods. These formulas are often used for people who have a condition called Eosinophilic Esophagitis. More info here: www.apfed.org.
That may not be what you have, but whatever is causing this, it sounds like the first step is getting you some nutrition.
Then, once you are stabilized, the next step would be to work with an allergist to see what foods you can add back in, one at a time.
Posted by Robin123 (Member # 9197) on :
Are you also chemical-sensitive? I have no idea whether this test would be helpful - the detoxigenomic liver test done by Genova Labs in NC - it tests for 8 detox pathways in Phase I and 4 main detox pathways out of 10 in Phase II liver detox. It shows whether we can detox.
I am currently using an FIR portable sauna detox tent to sweat out the body's toxin load.
Again, I don't know if this is the correct category of medicine for you.
Posted by sickmate (Member # 31502) on :
First its important to find out: Do your allergies come from gut or immune system. Surprisingly i found out mine come from the gut (h2 tests), ige and iggs are fine. Maybe too many abx caused a leaky gut in my case. How does your gut feel?
Posted by Kudzuslipper (Member # 31915) on :
Hi Jenni, I wanted to reiterate what WAinVA posted. There are many brands of these hypoallergenic nutrition drinks... The best you probably have to get through your doctor. But this page explains how they render them hypoallergenic.