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Posted 8/24/2014 8:04 PM (GMT 0)
I stopped my proton pump inhibitors bc they get so much bad press, and they can contribute to c. diff., and sibo, and I am a c. diff. survivor.

I'm doing licorice, Swedish bitters, digestive enzymes, probiotics, and just started a teeny bit of apple cider. Nothing's working.

I wake up in the middle of the night with an intense burning sensation, and I have to take baking soda. I also get sore throats, and I have asthma.

I had my mattress elevated for awhile, but it was giving me neck pain.

I guess I will elevate it again.

I tried Betaine, and that made the burning worse.

Margaret

I think I was once dxed with a hiatal hernia, but the ENT said I didn't need surgery.
Posted 8/24/2014 8:22 PM (GMT 0)
I used apple cider vinegar with baking soda to wean off zantac before bed and two nexium a day. See the earth clinic site for info and testimonials on this.
Posted 8/24/2014 8:31 PM (GMT 0)
dmw,

How did you do this? Ok, I'll check the earth clinic.

I really appreciate any info. Thanks so, M
Posted 8/24/2014 9:13 PM (GMT 0)
Allergies can cause acid reflux that won't necessarily respond to typical acid reflux treatments.

So can Sulfite Sensitivity. In my case, it is sulfites that cause me to experience severe heartburn/acid reflux.

Here's what I do to treat my acid reflux from sulfites:

Tums or chewable calcium tablet

Vitamin B12 oral spray

Molybdenum supplement

If I'm getting an allergic response (anaphylactoid) to sulfites, I add the following to the above:

Antihistamine (Claritin or Benadryl, in my case)

B12 shot

Homeopathic Nux V & homeopathic Ipecac. (NOT the drug store syrup) if I'm experiencing nausea or diarrhea

For routine maintenance, my protocol is:

Vitamin B12 shot at least once a week

Molybdenum supplement (about 3-400mcg/day in my case; YMMV)

Magnesium & Zinc supplement (minerals needed for sulfite processing)

Sulfite avoidance as much as possible

Vegetarian diet (animal flesh is very high in sulfur amino acids, which puts additional stress on the sulfite processing enzyme pathway in the body)

Email me if you want more details.
Posted 8/25/2014 4:45 AM (GMT 0)
Razzle,

You're always full of such great advice!

I don't think I consume anything with added sulfites. Oh, I just reread your post,and see what you're saying about animal flesh.

The thing is, I'm so allergic to so many things, I almost have no choice but to eat some meat.

I guess I will keep using the apple cider vinegar and the baking soda, even though they seem to cancel each other out?

Margaret
Posted 8/25/2014 6:39 AM (GMT 0)
ACV is loaded with sulfites. Anything fermented is high in sulfites.

Air pollution contains sulfites (sulfur dioxide - in car/truck exhaust & some factory emissions, etc.).

Are you able to tolerate MSM as a supplement? If yes, then you don't likely have a sulfite sensitivity.

Sometimes, acid reflux can be a side-effect of other medications.

Also, viral infections can sometimes temporarily mess up gastric motility, leading to reflux, feeling full after only a few bites of food, nausea, and other misc. symptoms. Ginger root tea may help, if you don't have gallbladder issues.
Posted 8/25/2014 9:42 AM (GMT 0)
Sulfur sensitivity often comes from a CBS mutation. If you have that mutation, you can often have high ammonia and taurine levels. Molybdenum and P-5-P are supplements that help with that mutation, but like Razzle said, eating products with less sulfur is what helps.

Access stomach acid often comes from elevated aluminum levels due to metal sequestration from H pyori. The excess acid, allergies, and asthma or breathing difficulty often go hand in hand. Reduce the aluminum level, you reduce the acid. For me, Pectasol-C worked and worked quickly. A scoopful of the powder 3 times a day on an empty stomach decreases stomach acid, urinary inconvenience, and can decrease headaches.

For individuals like you that have many problems (and allergies,) the GI flora is in really bad shape. If I were like you and was treating myself, I would treat the metals, the minerals, and then the microbes. The mineral and microbe treatment can overlap somewhat. A homemade walnut butter made with coconut oil really altered my GI flora. So did a very low fat diet. It takes time, I could only handle one walnut butter sandwich on Ekekial bread a day. Any more caused massive herxes. I started to reduce the metals and eventually I could handle 3 sandwiches a day with no herx. The no fat diet reduced my pathogen load to the point where the herxes weren't felt. I had to increase my Vit K level because it will drop when you go on a low fat diet. Not enough Vit. K is one of our major problems for us insomniacs. E coli converts Vit K1 to Vit K2 and if this doesn't happen, systemic issues like GABA and serotonin imbalances occur. I think the walnut butter sandwiches kills the E coli which may be detrimental to Vit K levels.
Posted 8/25/2014 11:50 AM (GMT 0)
I forget where your allergies are but I have GERD (it comes and goes) and I only take meds if I absolutely have to. You can do liquid carafe, this is by prescription. Milk is really supposed to help. Eating apples. I drink an aloe Vera and wheatgrass drink that I get at whole foods that is really soothing. I stick it in the freezer for a bit so it's super chilled.
Posted 8/25/2014 7:10 PM (GMT 0)
Hi Margaret,

I had horrible reflux the first year or so of Lyme thanks to the antibiotics and Doxy burning ulcers in my esophagus! It was so bad that I dreaded eating and always had a hoarse voice, sore throat, and chest pain. Prilosec et al only made things worse and it took me a little while to get past the backlash of coming off of those drugs. I found that the licorice supplement Rhizinate 3x was better at preventing and relieving symptoms, but it wasn't perfect and didn't cure me. What ultimately seemed to help in the most in the longer term was the Xymogen ProBio Max DF probiotic (no idea why that probiotic in particular seemed to be more effective than the others I tried) combined with regular cranio sacral therapy. I think the cranio sacral had an even greater impact than the probiotic. I saw good progress after a couple cranio sacral sessions and was nearly fully cured in a matter of months (maybe 6? My memory is hazy, I've almost forgotten about my horrible reflux days) and I've been reflux free for about 2 years now with no diet restrictions. I just started to get some pain at my sternum last week so wondering if it could be coming back, in which case I'll just go back to my old treatment plan, I'm very confident it will be easy to cure. Oh, and I should mention I didn't find any of the diet restrictions to be helpful in my case, I think combined with the drugs they made it so I had too little stomach acid, which obv isn't good for digestion and can also cause reflux.

I've heard others have had good success with the Apple cider vinegar, I didn't find out about that until after my reflux had resolved, but I have taken it for other things and I'm a supporter of it.

One of my friends (who does not have Lyme) was also diagnosed with a hernia and had HORRIFIC reflux for years- he could barely eat, lost 40lbs, couldn't exercise, it really got in the way of his life much like Lyme. He was all ready to sign up for surgery out of desperation when he found a doctor in Austin TX who gave him a small dose of a drug that used to be used for depression and is now used for a variety of conditions including apparently reflux. It turned out to be a miracle drug for my friend, he can't say enough good things about it. He and his wife both say it is life changing for them- I just saw them this weekend and they couldn't say enough good things about it. After years of misery and restricted diets he's back to eating whatever he wants including coffee and wine. I'll get the name and dosage of the drug and post it here. Best of luck!
Posted 8/25/2014 9:07 PM (GMT 0)
As promised, here is the info from my friend with the heital hernia and debilitating GERD:

He took Nortryptlyne 10 mg. Used to be called Pamelor.
http://en.wikipedia.org/wiki/Nortriptyline

His doctor (whom he loved) was Dr. B. in Austin, TX. Not a Lyme Dr, but I still won't post his name here in case it's an issue. Feel free to email me for the name.

My friend said the drug isn't supposed to work for everyone, but it did wonders for him. Basically, some people have what amounts to seizures in the diaphragm and/or esophageal sphincter. This can fix that. Took him another 9 months after that to get off the acid blockers. First he switched to 20 mg/day, then one every other day. Took 3 months or so on each step. But the GERD was under control, he could sleep again, he could eat again. He calls it magic.

He said the other thing that was effective in his case was he had a chiropractor work to basically pull his heital hernia down. Most chiropractors won't/can't do it. He used a Dr. S in Fairfax, VA. Again I can provide the chiropractors' name if you email me. Incidentally the same chiropractor had been recommended to me by a family friend as someone who might be able to help with Lyme, but I haven't decided if I want to pursue it as I have mixed feelings about chiropractors treating Lyme (apart from the structural, muscular, soft tissue, etc. manifestations) due to a past bad experience with a completely unrelated chiro. But the good news is at least the guy is familiar with Lyme.

Lots of options, some of which are obviously more expensive, invasive, and time consuming than others, but I hope some of it helps!
Posted 8/26/2014 1:15 AM (GMT 0)
Great advice, but whose advice am I to take?

I can't take all of the supps suggested, but I do need something.

Razzle and Georgia, I know you're right about sulfites and aluminum, etc. bc I just read something on Mayo Clinic about reducing protein intake to get rid of aluminum.

The thing is: What am I going to eat? Air and sunshine? I can't eat beans, most grains, or soy. Meanwhile, Paleo is the best thing for gut issues (even though I think the diet itself, and especially its name, is stupid). Eggs are ok, but milk is out. I do eat 2-3 tsp. of Kefir a day.

DC, I tried cranio sacral work, and it made me feel very very strange in the head/brain dept. I'll ask my docs about Nortriptyline. I've heard of that being used for sleep.

I've also heard of the chiropractor thing. I think my ND might know about it. I'll have to ask her.

I just talked to someone who has GERD-related chronic coughing today, and she was raving about Omeprazole. Go figure!!

I'm ok for now, but I think my ENT doc would shoot me if he knew I was downing apple-cider vinegar.

And hey guys, what about LEMON water? Is that too acidic?

I can never get it straight: Acid, basic, meat, vegetarian, what have you.

I had to straighten my bed when I had head and neck pain.

I will be tilting mattress again soon, hopefully.

Ok, so sorry, this is turning into a rant!!!

So one more little weeny rant: My insurance won't pay for my asthma medicine! X#$%@@@

Margaret
Posted 8/26/2014 2:05 AM (GMT 0)
Margaret, the mattress thing...are you bending the actual mattress? If so, can you lift the entire bed from the headboard end about six inches or so?

I have acid reflux and that's what I did; I found some pieces of wood and put them under the headboard legs to raise the bed. It helped a lot!

I have heard stories of people waking up on the bottom side or the covers sliding down but y wife and I have had no such problems. As a matter of fact, you get so used to it that when you sleep in a different bed (i.e hotel) you can't sleep because it feels different.

I have not had issues with my neck by raising the bed so that is why I dared to ask you.
Posted 8/26/2014 2:27 AM (GMT 0)
Georgia, I think you are absolutely right.

I now have the (so sorry, "ick factor") the green ammonia diarrhea.

I'm stopping my treatments (although I think ammonia is, to some degree, a sign that they are working, along with the nasty herxing, which is REALLY a sign they're working).

Ok, so metals, minerals, and microbes. Georgia, I hope you have an email.

If you don't, could you email me?

What is Pectasol-C? I'll Google it. What do you do for minerals?

Aren't walnuts and coconut oil high in fat?

Healing 98, I put a foam wedge under the mattress, but I sliced it so that the angle was less acute. It worked pretty well until I got neck pain, but I'm going to put it back tonight.

I have no clue how to put something under the bed, although I've heard of that before. I guess I have to find some strong men.

Why shouldn't you ask me? Ask me anything you want. :)

I know what you mean about the beds in the hotel room. It's nice to be flat for awhile, until you get post-nasal drip and reflux!!

Margaret
Posted 8/26/2014 10:46 AM (GMT 0)
I have a lot of training in archaeology/anthropology and I can tell you about the Paleo Diet. Those peoples ate meat when they could, and that was whenever they killed something. In all likelihood, they only ate meat a couple times a week. IMO, meat was not intended to be eaten every meal.

I can't tell you what to eat, but I do the best I can to eat the same things over and over. For breakfast, I either eat Panda Puffs cereal in an organic non-dairy drink (sometimes coconut milk)and cinnamon or oatmeal with cinnamon. I eat either organic peanut butter and homemade preserves (or walnut butter) on Ezekial bread with raw spinach leaves 3 times a day and a salad or baked vegetables for supper. I try to limit my fat intake. Peanut butter has fat but I limit the amount and only eat 1 sandwich at a time. I strive for under 35 grams a day of fat. If I take Nopal Cactus, that amount goes down a lot and it has negative consequences. Walnut butter and coconut are both high in fat, but using the Trojan Horse principle, it has been effective in defeating a lot of the biofilms. Coconut is a catechin and walnuts are a napthoquinone derivative. Parasites don't like either. The body must have some fat absorption for proper functioning and Vit. K absorption. Raw, organic spinach is one of the best foods I can eat. It's not filling, but it does wonders for my system. It is high in Vit K. Cook it slightly and the Vit K content goes way up.

As for supplements, I think I have about all of them. I don't take them unless I see a need and that isn't always a good thing. I do take Vit D3 quite often and will take Molybdenum if I will be eating more meat. I take Dr Yasko's All-in-One multivitamin. I've supplemented to bypass my MTHFR limitations and have been taking Pectasol-C for 3 or 4 months. The most dramatic improvements have come initially from the Pectasol-C and the Nopal Cactus. No adverse reactions that I could determine from the Pectasol-C but the Nopal Cactus can sure throw you a curve ball. As good as it works, I wouldn't feel right suggesting to take it unless under knowledgeable supervision. The same applies to the Walnut butter. It hit me pretty hard.

Post Edited (Georgia Hunter) : 8/26/2014 4:49:20 AM (GMT-6)

Posted 8/26/2014 3:55 PM (GMT 0)
Since Lyme and the co infections I've also had gut and stomach problems, one being severe acid reflux and no matter what i do it doesn't help. NOTHING has helped and I've tried it ALL i the past 9 years! The ONLY thing that helps me is Prilosec. The Dr. said its safer to take that than end up with cancer or Barrett's Esophagus from the acid in my esophagus.
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