It started with me choking while eating beef stroganoff on 1/25. My throat was sore with swallowing difficulties for a bit, I could only eat soft foods like bananas and applesauce for a couple days after that, then the stomach pains/lack of appetite/acid reflux hit me. I never had heartburn in my life before that.
Went on Nexium, got my appetite back, then chronic constipation happened. I assumed it was a side effect of the ppi, so I went off it, then started getting brain fog, weakness, rubbery legs.
I went to the ER multiple times, got the ELISA test for lyme since I pulled about a dozen ticks out of me in the last couple years, it came up negative. Went on prilosec since the reflux seemed to be never ending.
Soon after I had an incident where I was sitting and my hearing started getting muffled, chest pains, black spots slowly started to take over my vision, and I think I just about passed out for a couple seconds(I was alone so I'm not sure how long).
I've been monitoring my blood pressure since, and it seems to skyrocket after light excersise...hitting 140/114 after some light lifting carrying groceries in. My diastolic shoots up which scares me even more than the almost passing out thing.
My stomach started feeling a little better recently, so I started weening myself off the omazeprole. Last night, I got daring and cooked up some steak-umms. When I touched the meat, my fingers got all dry and wrinkly...and after I ate them the reflux came back a few hours later. Now Mirilax isn't even moving things out. Also, a welt appeared on my face since then.
Certain foods seem to trigger my symptoms: I suspect yogurt, bananas or the applesauce, hard candy(I ate one and my throat got tight), sour cream(tightened throat on this too), baked goods....Chicken and rice seem to be the only things that don't mess me up now. Even spinach and avocados made me feel ill. Not sure what the heck to eat these days.
Doctors tell me it's stress/in my head because my dog died just after Christmas. The GI told me to eat a lozenge and basically refused to do scopes on me. Lyme, or food allergy, or both?!? Not sure what doctor to see next. LLMD, allergist, or cardiologist? Posted by tulips (Member # 44773) on :
You have a lot going on. I can relate to a few of your issues. For constipation, drink a 2 - 4 oz glass of Apple cider. Zieglers Apple Cider is delicious. That's what I use. Apple cider will send you straight to the bathroom. If you get serious acid reflux, take a tsp of sugar. The sugar dissolves the mucous in the throat. I carry white sugar packets in my purse. For difficulty swallowing, carry sugar or Slippery Elm lozenges with you. Are you taking any herbs. I've been taking herbs for Lyme. After a while, I had to go off the capsules and switch over to Tinctures and am taking them now. They don't make me dehydrated. When I no longer have dehydration, I'll go back to powdered herbs.
Posted by NYCrystalDigger (Member # 45477) on :
Thanks yeah sugar doesn't seem to bother me that much. Lyme just seems to be the obvious suspect...I ate plenty of beef before this, now seem suddenly allergic to it. 2/5 people that dig on my property have already been diagnosed with it. I still have the scar from the last tick that got me in August.
Posted by NYCrystalDigger (Member # 45477) on :
No herbs yet really, I have some chlorella, but only take it in tiny amounts. Just magnesium at the moment, and a prilosec every couple days.
Posted by Keebler (Member # 12673) on :
- Glad to see you have posted in "seeking a doctor" for a LLMD. Yes, lyme / other tick borne infections should be considered.
In the meantime, now,
What has worked for me is a dairy-free, gluten-free, all processed foods free approach. Stop beef. Avoid all red meat for a while. There is a reason for this beyond what you might think.
DGL or Slippery Elm rather than Rx stuff was so much better for me, in a million ways. You might want to look over some of the articles here:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy.
[ 03-18-2015, 04:55 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Still, and even if your doctor is demeaning to you, it's important to keep monitoring your blood pressure at home as you have been.
[Although, I'd just not return to any such doctor. Connect with your area lyme support groups for a better GP - or ask when you get a LLMD if they have a suggestion.]
My guess, though, is that some of the food additives could be connected to the skyrocketing but some of the food groups, themselves, may be the underlying causes, too. Dairy & gluten, especially, can cause all kinds of gut troubles.
Trans fats, too.
Best for no more beef until you talk with your soon-to-be LLMD about any reactions you may have to that. [Edited to clarify - see DROID's Post below about Red Meat allergy to tick bites)
As for chicken, be sure no additives, free range is best.
VEGETABLES, light steamed and put in home made soups at just the last minute are a good focus.
non-gluten grain-like foods like buckwheat GROATS, Wild Rice, Black & Red Rices . . . Millet . . . and all kinds of legumes may be the way to go.
When you bake a chicken be sure to use the bones for a good broth. Just cover in water, no need for huge pot. Just make it condensed and add more water later with your soups. Your belly will love you for this.
[ 03-18-2015, 06:50 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Read up on articles / books by Stephen Sinatra, MD. Excellent detail on heart health (and blood pressure management). Not a LLMD (although he is very familiar with lyme). This is for food detail.
Glad to see that you have just posted to find a LLMD in NY or the Allentown, PA area.
While you sort that out, any refinements in diet will help. Many LLMDs suggest gluten-free (and some suggest dairy-free) as both can cause severe inflammation and other problems that can impede treatment -- as can all the food additives.
Good luck. -
Posted by Keebler (Member # 12673) on :
Also look up other body systems / functions. Excellent information here.
Though not at all about lyme, this is one of the best reference resources on my bookshelf that has wonderful chapters, many graciously available through their website.
The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et.al.)
He is a doctor of Ayurvedic Medicine; She a doctor of Oriental Medicine and Acupuncturist. The third co-author is a doctor of optometry. -
Posted by Keebler (Member # 12673) on :
- Just one of dozens of articles explaining some of the reactions &/or damage people have experienced from Proton Pump Inhibitors such as Prilosec, Prevacid, Nexium and others in that class of Rx.
- by Roni Caryn Rabin - The New York Times - June 25, 2012
This article could save your life especially how PPI can kill all the good bacteria in the GI Tract and that can cause so much trouble.
Also see some of the over 300 reader comments -- and look around for other health minded authors who have studied and written on this topic.
To see the comments, go back up to the top of the article and click on "322 Comments"
Thanks to Bryan from Poland for this excellent note:
Bryan - Poland - 29 January 2015
Magnesium supplements cured my GERD, LPR (silent reflux), joint pain, muscle tightness, Eustachian tube dysfunction (getting stuck open), slightly high blood pressure, and arthritis in my big toe/knee.
I spent two years suffering from reflux and bouncing around between doctors who told me to take Nexium for the rest of my life.
Nexium helped slightly in the beginning, but I suffered on with a myriad of problems until I started taking vitamin D and later Magnesium. Some of my symptoms cleared in as little as 2 days, but it took a number of weeks for my throat and voice to get back to normal.
Most americans are deficient in Vitamin D and Magnesium - do your own research, but I hope this helps someone. (end Bryan's comment) -
Posted by Keebler (Member # 12673) on :
- You say you take magnesium. Just be sure it's the right form - enough and often enough. And have it on hand in LIQUID form (Re-Mag) for near emergency symptoms. PPIs can strip you of important nutrients / minerals so you may not even be absorbing it.
Many with lyme are deficient in magnesium. And many lyme symptoms can be lessened with magnesium. Therefore, many LLMDs suggest supplementing 3 x a day (it must be spread out, not all at once).
As you read the information here, you will also notice much detail on its influence with blood pressure stability.
[ 03-18-2015, 04:37 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- PROBIOTICS (as the NYT article explained how PPI's can destroy good gut bacteria) be sure to add a good quality DIARY FREE probiotic.
I suggest it being dairy free, at first as it's very important to lay off of dairy as you sort through the cause of the issue in the first place.
As you (hopefully) will read in the NYT articles in the "excitotoxin" thread, Mark Bittman's series "GOT DAIRY?" and see the comments there, too, so many wrote about how they got their lives back when they left dairy out. It's sure worth a trial run.
Gluten & Diary (in addition to gut flora) are the top two considerations when there is any gut trouble.
Good luck. -
[ 03-18-2015, 04:02 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
over 50 reader reviews, a near perfect composite 5 star rating.
One reader notes: "Conducive to almost all specialty diets out there! GAPS, Paleo, vegetarian, gluten free, dairy free, real food......you name it, you will find a lot on this book for you." -
Posted by Keebler (Member # 12673) on :
- Sorry to hear about your dog going to green pastures about 10 weeks ago. That kind of sadness and loss can have profound effects on your body & psyche.
Although, certainly, this is not at all the main factor in your symptoms as that lazy doctor (did he mention ANY of the suggestions above - or others beyond a PPI? A lactose test? A genetic celiac test? . . .)
& condescending doctor (to say that the loss of a pet is the cause for the "stress all in your head" is just so very wrong - and ignorant)
seemed to think (there are just so many other connections to your symptoms), therapy is still very important and should be helpful in many ways.
You might ask your vet for any grief support groups around. It can make a wonderful difference to work with a professional or in a group with a counselor's guidance.
There's articles all over about it. You are in NY which is highly endemic for lyme, exposure to ticks, blood pressure spikes, gut/stomach issues, etc.....
ELISA testing isn't even 50% accurate.
I definitely suspect lyme.
Posted by Keebler (Member # 12673) on :
- Boing ! Of course. So glad droid brought up the beef / red meat allergy from ticks topic. This possibility should be highlighted & spelled out - as droid's link does so you will know to avoid beef until you consult with the new LLMD (once you find one).
Also to consider: SULFITES.
Many processed meats contain sulfites in addition to who knows what else. Many prepared foods in general can, too. I just happened upon an article about sulfites on prepared salads and it occurred to me they are used in meats to keep the color.
As for why spinach and avocados - and yogurt & bananas seem to trigger symptoms, could be that they are all are fairly high in glutamic acid, which has a stimulating effect.
Beef is high in glutamic acid so there may be some kind of connection there with the allergy reactions in some after a tick bite -- although there can be so much going on to say it's just this or that.
You might Google "Amine foods" and see which ones are high in glutamates & salicylates. See if there are any ah-hah moments. This is not the best list I've seen but for a start, scroll down for a basic list:
[ 03-18-2015, 05:33 PM: Message edited by: Keebler ]
Posted by NYCrystalDigger (Member # 45477) on :
Thanks all MUCH appreciated.
Posted by NYCrystalDigger (Member # 45477) on :
Is Benadryl a bad thing?
Posted by NYCrystalDigger (Member # 45477) on :
I guess so, just read it raises blood pressure.
Posted by Keebler (Member # 12673) on :
- Droid's post brought us around to this possibility. Still, there can be many other things going on all at the same time, too.
There are many good articles on this topic. Just two to offer some more insight & you can search further beyond these.
For the best detail about lyme and tick-borne infections, top two links. The detail about ticks & about lyme / TBD in the all the various allergy articles out there may or may not be accurate so be sure to consult ILADS & ILADS "aware" groups for full details.
Sudden Food Allergy Was a Medical Mystery for Months
- by Sandra G. Boodman - Special to The Washington Post - Oct. 20, 2009 -
Posted by NYCrystalDigger (Member # 45477) on :
within 10 mins of touching the cooked beef my finger tips dried up and these horizontal lines appeared on them. I had to use tea tree oil and vaseline, then wear gloves over them for hours to make it go away. I've been dairy and gluten free for weeks minus that one "test" funny cake. Before the choking incident that started it all, I could eat anything, with regular bowel movements every day. Weirdness.
Posted by Keebler (Member # 12673) on :
- I hope you can find answers. The LLMDs who you consider, you might ask their office manager / head nurse about this matter at the time you schedule an appointment. They may have far better detail for you.
In the meantime . . .
PPIs can make this MUCH worse. In the Wash. Post article above, they speak of the importance of good gut bacteria. PPIs inhibit that.
You might try to track down the person who was head of the study at UVA.
A Resource on the Mammalian Meat Allergy from the University of Virginia
Be sure to scour this site. They've posted no updates for a few years so I would contact one of the two doctors involved to see if there is anything new. From the FAQ:
Galactose-alpha-1,3-galactose (Alpha-Gal) IgE - TESTING -
Posted by NYCrystalDigger (Member # 45477) on :
I wonder if doing nitrous balloons can bring about a sulfite allergy? I did some on New years and it tasted like SULFUR!! lol I suspected it was auto grade, which contains sulfure dioxide....yuck.
Posted by Keebler (Member # 12673) on :
- Assuming you'll likely avoid all processed foods as it's hard to know exactly what's in most of them and until you know more it's just best to avoid any hint of beef, lamb, pork. {You say you do okay with chicken but I'd not have it every day.]
However, you may not consider gelatin in capsules for many Rx, OTC & supplements. VEGGIE caps would be the way to go, but you'd want to be certain.
Gelatin is usually from beef. A search for "hidden" meat ingredients may be in order, too, although the site above likely has some detail on this matter to hold you over.
I find the reader comments to offer some good tidbits as well. -
Posted by Keebler (Member # 12673) on :
- What in the world are nitrous balloons? Do I even want to know?
I just found out. Several articles from a search of "nitrous balloons"
Well, uh . . . this sounds VERY dangerous, indeed and sure looks like it could lead to damaging effects long after the event, too. -
Posted by NYCrystalDigger (Member # 45477) on :
laughing gas, the dentist knocks you out with it.
Posted by Keebler (Member # 12673) on :
- Yes, it can be very bad for a body to do "nitrous balloons" and it's of great concern that you suspect it was "auto grade". And it could explain a whole lot. Thank you for that information.
I assume you read all about it first, or afterward. If not, do read up on it on educational / medical sites.
Any doctor with whom you work, though, really needs to know about this so they have the important information BEFORE they start thinking about all other possibilities.
Of course, with all the tick bites, still seek out avenues there. Stay safe. -
Posted by Keebler (Member # 12673) on :
Dangers of Nitrous Oxide -
Posted by NYCrystalDigger (Member # 45477) on :
Thanks, yeah I've been honest about that with all of them, and my past cannabis consumption, which I do miss. This diet thing has been tough, but I can do it.
Posted by Keebler (Member # 12673) on :
- It's appalling that none of the doctors you've seen did anything to help you "recover" from what could be damage from the "nitrous balloons" -- however, this kind of doctor has that kind of skill.
Best if you can find a LL ND, yet for starters, to help undo some of the effects of the oxygen deprivation to your brain and the immunological effects that can linger, you might find a ND close to you and then later see if you can find one who is also Lyme Literate. Take care.
Find a Naturopathic Doctor - NY State Assoc. -
Posted by NYCrystalDigger (Member # 45477) on :
Thanks, just did a little reading on it, and I would have had severe breathing problems within hours of doing it(plus everyone around me did a lot more than me and are all fine), which is probably why the docs wrote it off. Long term effects usually have respritory distress as a main symtptom....besides panic attacks I haven't really had any breathing problems. I'll probably go to a naturopath soon though too, since they actually listen and aren't trying to rush you out the door
Posted by Keebler (Member # 12673) on :
- You mention a restrictive diet being tough. Yeah, the transition can be a bit daunting and leave one feeling deprived. But do not allow that.
Depriving your body of essential nutrients and great flavor won't work out any better than depriving your brain of oxygen (as with nitrous balloons - even one time, it's depriving brain of oxygen and causing trouble in the body in other ways that may not be apparent at the time).
Branch out. Explore. Embrace - healthful foods, spices (not too spicy hot for you right now, though) and culinary herbs. Start with onions, leeks, shallots and add all kinds of vegetables, chicken, beans, etc.
Find Christina Cooks website. She really knows how to make a vegan diet delicious. Just work around wheat or too much rice syrup of which she is fond. Go for a good quality Stevia instead for sweetness. Otherwise, she will wake up your cells to fabulous foods. -
Posted by Keebler (Member # 12673) on :
over 50 reader reviews, a near perfect composite 5 star rating.
One reader notes: "Conducive to almost all specialty diets out there! GAPS, Paleo, vegetarian, gluten free, dairy free, real food......you name it, you will find a lot on this book for you." -
Posted by Robin123 (Member # 9197) on :
A good amount of mangosteen juice can help prevent constipation. Found in healthstores and online.
Posted by NYCrystalDigger (Member # 45477) on :
Thanks, my diet before this was pretty bad....lots of sugar, pizza, McDonald's, fried foods....very little fruits and veggies. I was also concerned about mold exposure since our basement flooded in the past and I spent a lot of time in there this Winter(docs dismissed that too without any tests, refusing me when I asked them to write a script for a blood test). SO many things it could be, but the tick bites were at the top of my list. I got bit by so many in the last few years, and will probably get bitten by a lot more as I'm moving onto my wooded property which is full of them.
Posted by NYCrystalDigger (Member # 45477) on :
Thanks Robin, I'm a bit opposite of constipated now due to the mirilax, and am scared to do the reglan I was prescribed after reading the side effects of it.
Posted by NYCrystalDigger (Member # 45477) on :
My property has TONS of leeks/ramps Keebler, I was selling them at an Amish auction this past Summer(though they brought in next to nothing). I haven't tried them yet, but will soon.
Posted by Keebler (Member # 12673) on :
- Miralax is Polyethylene glycol. If you are the "opposite of constipated" there is no need to continue it. And there are more healthful ways to approach a balance.
Magnesium (some forms) or Mangosteen Juice are far better options to relieve constipation - or to establish a good routine.
Not only do they help relieve various OTHER rough symptoms (so they quadruple their value), they are excellent nutrients that help build our cells.
They help correct an imbalance that causes constipation. It is food. Food can be our medicine, to a good degree, anyway, in many aspects. -
Posted by Keebler (Member # 12673) on :
Back in December of 2011, the FDA placed MiraLAX — a polyethylene glycol-containing blockbuster drug marketed by Merck & Co — on its Adverse Event Reporting System (AERS) in connection to “neuropsychiatric events.”. . .
. . . Polyethylene glycol is made by stringing together molecules of ethylene glycol into a large polymer chain, hence the prefix poly-, Greek for many.
On its own, ethylene glycol is used in automotive antifreeze and brake fluid. According to the National Institute for Occupational Safety and Health, it is an extremely toxic substance:
“Ethylene glycol is chemically broken down in the body into toxic compounds. It and its toxic byproducts first affect the central nervous system (CNS), then the heart, and finally the kidneys. Ingestion of sufficient amounts [as little as 30 ml — KM] can be fatal.” [2]
The term “neuropsychiatric events” in the FDA's safety alert refers to neurologic disorders of the central and peripheral nervous systems such as autism, dementia, depression . . . .
. . . These conditions result from PEG's direct (through cellular damage) and indirect (through malnutrition of essential micronutrients) neurotoxicity. . . . [cont'd at link above.] -
Posted by NYCrystalDigger (Member # 45477) on :
i just have mg oxide now, I ordered the chelated mg pictured below on eBay but it hasn't gotten here yet. I read somewhere that that is the highest absorbed, is the liquid better? There's nothing I'd like more than to get off the PPI's, the week I went off them in the beginning was utter hell, though. I will try that juice for sure.
[ 03-19-2015, 01:02 AM: Message edited by: NYCrystalDigger ]
Posted by NYCrystalDigger (Member # 45477) on :
Update: I think the wrinkled hands seem to be a form of Raynaud's Syndrome....they wrinkle up whenever they get cold...I noticed last year I had an intolerance to cold in my hands and feet? ....so possible Scleroderma or CREST?!? Can a tick bite cause that?
I'm off the Prilosec, haven't had any bad reflux like in February, though maybe I'm just not noticing it and its silent? Still battling the constipation....still decreased sweating and I bust my ass digging trenches when I mine crystals....severe back pain seems to appear when I do that now. If I lie down for a few hours I'm fine, then rinse/repeat.
![[confused]](graemlins/confused.gif)
![[Smile]](smile.gif)
yeah sugar doesn't seem to bother me that much. Lyme just seems to be the obvious suspect...I ate plenty of beef before this, now seem suddenly allergic to it. 2/5 people that dig on my property have already been diagnosed with it. I still have the scar from the last tick that got me in August.
