reflux, GERD and atypical treatment

Another question: Does anyone think that many former SDers who find a solution, cure or significant improvement of SD move on and fail to communicate their success to SD groups? It is possible that persons who have episodes of SD which are quickly resolved through atypical treatment and who consequently do not get diagnosed as having SD, do not report on their "cures" I wonder how many such persons there are and how information about them could be gathered?

Glad you did the Search thing - I'm supposing that you did find the past discussions on GERD/reflux. I know there have been many in the last year or so.

There was a question about reflux and SD at the Phoenix Symposium -
Is Reflux involved in SD cases?
Dr. Berke: Simple answer: yes and no. Surprising how many SD have reflux, but it's also surprising how many people in the general population show GERD symptoms. Must treat reflux. AB has more reflux involvement.
Dr. Maragos: Disbeliever of reflux as causative factor. Co-existence is there and it needs to be treated.

I personally believe that SD is a causative factor of reflux, and that many of us don't even know we have it ("how can I have reflux without heartburn or any other obvious symptoms?") I always suspected that my case had "co-existence" and, sure 'nuff, when they scoped me for the Botox injection I was diagnosed with severe (!) reflux. It may not cause SD, but it sure ain't good for the vocal cords.

As for your other question - yes, I think it is very possible that people who are "cured" or otherwise very successful with some type of treatment may get lost out there with the living. I particularly think that we may not hear about the people who have success with atypical treatment.

My thoughts and you are welcome to them. :-)

I wish you well, Robin (AB/So. Calif.)

I think this is a crucial topic and you addressed it
beautifully, Rachel!

My input is this ...

I used to have SD, but no longer do. I had Dr. Berke's
De-Re/SLAD surgery, and am here on this board, NOT disassociating
myself with others who still suffer -- merely because I do not.
There are at *least* two ways of thinking regarding the alienation
of some who have been cured (I, for one, am a prime example of
having great success post-op): 1. Some people wish to pursue
answering questions of those who are still deeply involved in their battle with SD, with hope that their knowledge and wisdom can help others. 2. Others who fought long and hard to rid themselves of SD
and did so, successfully, prefer to "move on" with their lives and
put the whole experience behind them. By doing so they're not
around any longer to be approached. I find neither decision the
"right one," only a matter of personal preference. That's the
long answer to YES, there are MANY people who no longer have SD
and aren't visible anymore.

As for GERD: It's been a hot topic for eons. There's no
scientific PROOF (to my knowledge) that reflux causes SD or
vice versa. As a result of having GERD myself, I know it can
make the symptoms of SD worse, since the effects of the acid can
create MANY difficult health issues, not just intensify SD.
Treatment with Proton Pump Inhibitors such as "Prilosec," "Nexium" or "Prevacid," rank at the top of the charts to treat this
disorder. As a side note, just for safety, I want to add that
it's important for Liver Enzyme Panels to be drawn on patients
who take these drugs to ensure no liver damage has been caused
by any of these potent but often necessary drugs;
at least annually,semi-annually is preferred, depending on the
dosage prescribed). Reflux can and often does cause the loss of
volume of voice, the loss of singing ability and another problem
known as REFLUX LARYNGITIS. That's something to explore ...
Change in diet may prove beneficial (avoid consuming food and
drink that are known to aggravate reflux). Avoid caffeine,
and products that contain caffeine (chocolate, etc.) spicy foods,
alcohol, over eating, and eating too close to bed time. Elevating
ones head at night may help keep stomach acids from coming back
up through the esophagus during sleep.

With regard to diagnostic testing (in Kerry's post) for reflux:
Yes, 24 hour Ph Probe studies and Upper GI testing are common diagnostic tools for physicians to use when trying to determine
the underlying cause for the GERD. Let me add two more tests to
the myriad that's already been mentioned, because they are less
common, and quite useful:

1. Octreotide Scans. This test is performed similarily to an
MRI with contrast. The patient is first injected with
a "tracer" dye, aka: Octreotide, then scanned, painlessly,
(for about two hours). The test is highly advanced and
expensive. For the most part only Gastroenterologists
prescribe them (it's highly specialized). But, this scan
has the ability to detect tumors or other potentially
fatal abnormalities hidden ANYWHERE in the body -- that MAY
be creating symptoms of GERD. A great doctor and cooperative
patient will not rule out having this test done, if the
reflux is severe and therapy with Proton Pump Inhibitors have
failed.

2. Gastrin level testing. This is a simple blood test, specifically
drawn on a patient with recalcitrant GERD/reflux. Elevated
Gastrin levels can be indicative of high acid levels within
the body, and require a physicians attention. Note that
PPI's (Proton Pump Inhibitors) can SOMETIMES cause Gastrin
levels to rise, so before being tested, it's wise to stop
any PPI's you're taking for at least 2 weeks, before the
test, to ensure accuracy.

I hope I've added some information for others to sleep on ...

All the best,
Danny

GER=Gastro-Esophageal Reflux. (Gastro=stomach. Esophagus=food tube.)

LPR= Laryngeal-Pharyngeal Reflux. (Larynx=voice box, containing the 2 vocal cords. Pharynx=throat, above the larynx. The larynx is above the trachea/windpipe.)

Reflux=acidic or alkaline stomach material that backs up into the esophagus (food tube), causing any of these problems: VCD/Vocal Cord Dysfunction/Laryngospasm attacks, cough, voice problems, asthma, globus (feeling of lump in throat), constant need to clear throat, worsening of sinus condition, sore throat, pre-cancerous conditions of throat &/or esophagus, etc.

SOME GER/LPR CONTROL THINGS WE DO, that we learned from the excellent book: STOMACH AILMENTS AND DIGESTIVE DISTURBANCES, by Michael T. Murray, N.D. See page 9, References, in my website: http://cantbreathesuspectvcd.com and, also see GER/LPR info on page 5, and on LINKS page.

PLEASE READ THIS GREAT BOOK. It may possibly be bought on-line, from Michael T. Murray’s website.

Some of the following we learned from people &/or other books, &/or other good websites about voice, GER, etc.

(1) DGL (De-Glycyrrhizinated Licorice) is one of our main methods of controlling the GER/LPR. We use Enzymatic Therapy brand DGL, shortly before ALL meals (breakfast, lunch, supper). The DGL does NOT cause high blood pressure, and does NOT cause fluid retention/edema, because the bad (steroidal) part of whole/crude licorice has been removed, leaving the DGL. DGL is available at most health food stores, and at good pharmacies.

The DGL tablet(s) must be chewed, to mix with saliva, to be effective. If it is too dry, one could mash/crush it and mix with a little water, and then chew it up. Chew tablet(s) for about 10 seconds (at least), to thoroughly mix with saliva, shortly before EVERY meal, and if necessary, between meals (Read label directions).

The DGL seems to not only promote healing of throat, esophagus and stomach, but also seems to help prevent OUR reflux.(resulting in no more globus/lump in throat sensation, no more constant throat clearing, excess mucous, excess phlegm, no more NIGHT-TIME VCD/Vocal Cord Dysfunction/Laryngospams attacks, no more laryngitis, etc. for us)

We like the taste of the plain, fructose-free, DGL CHEWABLE tablets, but for those who hate the taste, try mixing the crushed tablet with a tiny bit of mashed organic banana, and then chew thoroughly, to mix with saliva. Avoid any DGL that contains mint. (Mint—in all forms, can cause gastric reflux episodes. AVOID MINT!!).

(2) We use Thayers brand of SLIPPERY ELM Throat Lozenges when we feel the need. (Soothing, coating, healing, nourishing). Slippery Elm (inner bark from a tree) also comes in teabag form, or in bulk, etc. as an herbal supplement.

(3) We drink the occasional small glass of CARROT JUICE (organic, fresh) which soothes, coats, heals the digestive tract, is nourishing, and stimulates the immune system, with beta-carotene, soothing and coating PECTIN (a type of fiber), and other good nutrients. (Carrot soup, cooked carrots are also good. Beta-carotene is heat resistant.) (Beta-carotene later is turned into Vitamin A inside us). Do not overdo. If your skin turns orange, cut back on the carrot juice. Avoid beta-carotene pills -- too potent.

(4) We tried elevating the head of the bed a few inches, by putting 6 inch to 8 inch BLOCKS, ON THE FLOOR, under the head end of the bed. This creates a slant (tilt), where the head is 6 to 8 inches higher than the feet. This helps some people, but not all people. (Check with a pediatric Gastro-enterologist, about raising the head end of a bed of a child, or a crib of an infant). Also, see (16) about a special GERD PILLOW, for adults.

(5) We try NOT TO BEND OVER too often, and we try to AVOID STRAINING (Valsalva maneuver). We AVOID LIFTING HEAVY objects. (No weight lifting!) (at least until after no more reflux symptoms for 3 months).

(a) If CONSTIPATION is causing any straining, see Ref.15,18,23,24,25 on page 9 for ideas about gently treating constipation, including eating whole grains, not white (de-natured ones), etc. For us, exercise, increased water intake, acidophilus/bifidus, digestive enzymes, avoiding junk food, improved diet, chewing slowly (takes will power!), eating when not under stress or angry, etc., all are helpful.

(6) NO MORE TIGHT pants, belt, corset,--AVOID TIGHT CLOTHING etc.

(7) We try to not eat too much junk food. Some people avoid acidic food, while others need to eat acidic food, if their stomach is not producing any (or enough) acid. (It is good to avoid acid, if one has an ulcer.) These gastric reflux tips methods often can help to heal ulcers. Some people need betaine hydrochloride supplements, which becomes HCl/hydrochloric acid, or, some use vinegar (acetic acid) in salads, or mixed with water, while others need to avoid eating excess acid. Each person is unique. We avoid all artificial sweeteners. Anyone with diabetes might want to look at the excellent book Reversing Diabetes, by Dr. Julian Whittaker, M.D..

Diet soda pop contains the harmful artificial sweetener Aspartame (Equal/Nutrasweet), which can cause WEIGHT GAIN, HEADACHES, UPSET STOMACH, BLURRED VISION, BLINDNESS, TWITCHING, SEIZURES, BRAIN TUMORS, HYPERACTIVITY, MOOD SWINGS, ETC., and soda pop often has strong acids, plus other harmful artificial ingredients. Plain water, gentle herb teas, certain fruit juices, brown rice-milk, etc. are healthier substitutes for soda pops.

We try to avoid all artificial ingredients, including fake fats (like Olean, Olestra, etc.), because these can destroy the digestive system, and prevent absorption of vital nutrients, such as fat-soluble vitamins (A, D, E, K) from foods. These fake fats also prevent digestion and absorption of needed fats & oils, used to repair myelin nerve cell sheaths (made of fatty material, mostly cholesterol). Hormones are also made of mostly cholesterol.

See the rest of these tips in the next message.

I hope these help!

(8) We try to drink more water, to prevent chronic dehydration. We like hard (nicely mineralized) well or spring water.
We do not drink distilled water (soft water, no minerals), because it can leach minerals out of our bones, possibly contributing to osteoporosis. (See Ref.18,23, on page 9.) We avoid water softeners (chemicals) because they can be toxic, and because good minerals help keep us healthy. People with KIDNEY PROBLEMS &/or GLAUCOMA, etc. should ask their docs how much water is safe to drink, since too much water can be dangerous for them! (But, dehydration can cause problems also.)

(9) We use ACIDOPHILUS/BIFIDUS ( edible beneficial bacteria which keep bad YEASTS away, such as Candida Albicans, formerly called Monilia). ACIDOPHILUS/BIFIDUS also can eat or control some bad bacteria, and some viruses. The acidophilus/bifidus are also called PRO-BIOTICS and are beneficial intestinal flora (mainly for the large intestine). We keep the jars refrigerated, but not too cold. These are available at health food stores & pharmacies. (See Ref.14,15,23,24,25, on page 9).

Acidophilus/bifidus can re-populate the large intestine, with good bacteria, after antibiotics &/or steroids, etc. have killed off these good bacteria! Some of us have to continue eating the acidophilus/bifidus (daily, or from time to time), but the results seem worth the effort to us.

Yogurt and buttermilk contain similar beneficial bacteria, but are milk products, so see (11) below about milk products.

(10) We use DIGESTIVE ENZYMES. My husband likes Acid-Ease by Prevail, which contains Slippery Elm (inner bark), Marshmallow Root, Gamma-Oryzanol (from Rice Bran Oil), and the plant enzymes Amylase (digests starch), Lipase II (digests fat), and Cellulase I (digests cellulose from plant cell walls). The Acid-Ease does not contain Protease, which can be very irritating to ulcer/GER folks.

The Acid-Ease is NOT an acid blocker. It is not an antacid. It soothes, coats, nourishes, and promotes healing. Its enzymes help with leaky gut syndrome.

I use Total Enzymes (which does have Protease, a protein digesting enzyme) by Nutri-West, a company that sells only to health practitioners (Chiropracters, Physicians, and others). One could ask their physician to order, at cost, for them, by having physician call 1-307-358-5066.

Digestive enzymes are NOT FOR EVERYBODY.

(11) My husband has found that AVOIDING MILK PRODUCTS helps him feel less congested, with less mucous in throat. Milk and milk products can cause gastric reflux episodes. Brown-Rice Milk (look for gluten-free) can substitute for milk (but not for babies!).

Gluten is in wheat (includes spelt & kamut), rye, oats, barley, & buckwheat. Read labels to avoid hidden gluten, in some soy sauces, gravies, grain alcohols, beer (barley malt), etc. People with Celiac Disease need to avoid all foods containing gluten. BROWN RICE (organic) is gluten-free. Corn is gluten free, but is very allergenic (allergy causing), so avoid corn. Avoid millet, at first, because there is disagreement about whether millet is safe or not, for Celiac patients.

MILK MAY CAUSE MORE ACID to be produced, IN THE STOMACH.

I occasionally eat milk products, like yogurt, cheese, whipped cream, or my ACIDOPHILUS/BIFIDUS, which is mixed with goat milk powder. So, at these times, I take LACTASE ENZYMES, to digest (break down into easily absorbed small molecules) the milk-sugar called LACTOSE. Many people (due to heredity &/or disease) have Lactose intolerance, where the small intestine does not secrete the lactase enzyme. Result is that the milk-sugar (lactose) travels further down the small intestine than it should. Then, bad bacteria eat the lactose, giving off lots of gas (a by-product of the digestion of bad bacteria), and this causes folks to get bloated, gassy, have diarrhea, and cramping. I use Lactaid brand lactase enzymes, and it works for me. Ordering direct from them can save money.

(12) Using the above methods has almost completely freed my husband of needing to use Tums, and seems to be nicely controlling his and my GER/LPR. We have never used acid blockers.

ACID BLOCKERS CAN HAVE DANGEROUS SIDE EFFECTS: Some examples are:

Acid must be present in the stomach, in order for the stomach to make a substance called Intrinsic Factor. Intrinsic factor must be present with Vitamin B 12, in the stomach, for absorption of Vitamin B 12 to happen, in the ileum (last part of the small intestine), I believe.

Acid blockers therefore prevent absorption of Vitamin B 12. Malabsorption (lack of absorption) of Vitamin B 12, causes NERVE DAMAGE (pain, numbness, pins & needles sensation, etc.) in the peripheral nerves (outside the brain & spinal cord). This is called PERIPHERAL NEUROPATHY. For details about this problem, see the Peripheral Neuropathy forum at http://www.braintalk.org

If Vitamin B 12 continues to NOT be absorbed, eventually there can be NERVE DAMAGE to the Central nervous system (brain & spinal cord).

ALSO, the minerals calcium, iron, zinc, other minerals, and important trace minerals, etc. cannot be properly absorbed, when there is no acid in the stomach (due to acid blockers, etc.).

AND, protein does not get properly digested (broken down--eventually into amino acids), in the stomach, when there is no acid in the stomach.

Doctors and pharmacists can advise about gradual(slow) tapering down (weaning) schedules (when and if safe) for the acid blockers. Some acid blockers, when stopped too quickly, can cause rebound acid secretion in the stomach, resulting in excess hydrochloric acid secretion.

ALSO, SOME FORMS OF REFLUX ARE NOT ACID REFLUX, but are ALKALINE REFLUX, (bile is alkaline). Besides refluxed stomach acid (HCl/hydrochloric acid), Pepsin (an acidic proteolytic/protein digesting, enzyme) & bile (alkaline) can irritate & damage: the esophagus, throat, vocal cords, & lungs.

(13) Do not drink ICY COLD DRINKS, and AVOID VERY HOT DRINKS. Use room temperature drinks, or slightly cool, or warm, but not ultra-hot. Extremely cold or hot liquids can irritate the stomach, which is bad for ulcers &/or gastric reflux.

The tips are continued on the next message.

I hope these help!

(14) Ask physical therapists, chiropractors, osteopaths, etc. if they know any safe adjustments that might lessen GER/LPR, if you wish.

(15) Read (by Dr. James A. Koufman) PATIENT INFORMATION SHEET ON REFLUX by Center for Voice Disorders of Wake Forest University. Here’s a link: http://www.bgsm.edu/voice/pt_info.html Dr. Koufman was a pioneer in showing the connection between stomach reflux (can be acid reflux OR alkaline reflux) and breathing problems!

(16) Some have found a special (large) GERD pillow helpful for preventing GERD episodes while sleeping and while lying down. Here is a link to the Prop up pillow website: http://www.propuppillow.com

(17) Avoid harmful chemical air pollution, which can aggravate gastric reflux. See page 5 of VCD website for more about this.

(18) Using the above methods, in addition to the SINUS SURVIVAL tips, has helped us to prevent VCD attacks, in us.

(19) Please check with your doctor, in advance, to be sure that it is OK for you to try these tips, in your particular case. Also, please get monitored by your doctor, to be sure that no more damage to the throat, esophagus, stomach, vocal cords, lungs, etc. is happening, from possible SILENT gastric reflux.

Pregnant or nursing ladies should check with their doctors, before trying any of these tips.

Avoid any herbs, foods, etc. that you may be allergic to.

Check with your doctor and pharmacist, to be sure that there would be no harmful interactions between any of your medications, diet that you may be on, and any herbs, foods, etc. mentioned in these tips.

Check with your doctor, to be sure that these tips would not interact badly with any medical condition you may have.

These tips help my husband and me (adults). Some of these tips may be OK for children, and others may not be OK for children. Check with your doctor! Babies with gastric reflux need DIFFERENT treatments, not these tips (except for raising the head end of the crib, if your doctor says it is OK to do this, etc.). Check with your doctor!

It was a lengthy posting, but--I hope these tips help! :-)

Rachel

The surgical treatment for GERD you're probably referring to is called a (Neissen) FUNDOPLICATION. This procedure is drastic, life-altering and does not have outstanding long term results. I would live with GERD for the rest of my natural life before succumbing to THAT specific sugery.

If you ever are interested in trying some of the Gastric Reflux "tips" (without acid blockers), you could check with your doctor, to be sure that these "tips" are compatible with your particular health situation, and then, try the tips for 2 weeks.

Several people who tried these tips for a couple of weeks, have told me that they were very surprised (pleasantly surprised) at how effective these "tips" were, for their reflux. Almost all of these people told me, that after about 2 weeks of using ALL the tips, they were able to successfully SLOWLY wean off the acid blockers, while continuing with the "tips".

Conservative methods (like the "tips") should be tried before resorting to surgery, when possible. These tips are medically sound, and in fact, an Emergency Room doctor (MD) in California, having VCD (Vocal Cord Dysfunction/Laryngospasm) due to GERD, tried these same tips, and was amazed at how much they helped him. A nurse located in my state (Colorado) had similar excellent results! My husband and I had good results, and we use the tips every day.

If you ever do decide to try them, let me know how they help. :-)

Sincerely, Carol
http://cantbreathesuspectvcd.com