just want to share with you my journey treating lpr. i have been doing so much research and self experimentation. i realize everyone is different. but here is what is and is not working for me.
how it started:
i now realize in feb 2014 when i had a bad flu, the laryngospasms i had for 3 nights was the start of lpr. but the laryngospasms did not persist beyond those nights, my cough without any other symptoms lasted like 6 months. and then it went away.
but 6 weeks ago, a few weeks into simultaneously taking a course of both ibuprofen and flexeril prescribed by a doctor for an injury , i started to get stomach pain (gastritis). the doctor told me just eat more when i take the pills. a few days later, i got a cold and day two of the cold i woke up in the middle of the night with laryngospasms and i threw up repeatedly from a choking sensation. and then had tons of signs of lpr mixed with my diminishing cold during the next day. but the day after that my cold was gone, lpr symptoms persisted. the phlegm production was out of control but clear! i stopped the nsaid pills and flexeril after the first laryngospasm. who cares about
pain when you can't breath! this went on for 5 nights. during the day i wasn't so bad only because i didn't have those laryngospasms. i never had any heartburn. actually in my whole life i have never had the symptoms of traditional heartburn.
luckily for me, in the news around the same time obama got diagnosed with lpr. this helped me understand what was wrong right away. i went to an ent 2 days later, who agreed i had lpr after a scope and immediately gave me zantac 150mg and nexium. i am very sensitive to medicine. the zantac immediately caused me to get a terrible headache, caused me to burp which was not a symptom i had previously and caused my arms and feet to tingle and feel intermittently numb. it happened every time i took the pill but luckily tapered off when i didn't. at this time i also elevated my head with a 12" wedge. these things did not stop the laryngospasms. also it was hell for my injury requiring medicines all contraindicated for lpr and sleeping with my my head elevated! but what could i do?
anyway after that zantac interlude the doctor just told me to take nexium and tums and told me "you treat lpr exactly like heartburn," and that was that. i never took a nexium pill. i started the dropping acid diet and 3 days later the laryngopasms stopped. that same day i saw another ent who is awesome!!!! beautiful person! got scoped again, ugh! but the doctor stayed with me 1 hour explaining the condition and my choices. i was dissuaded from trying the natural path but she made a deal with me that if i was doing better in three weeks she would just have me continue using diet, supplements and gaviscon advance. three weeks later she said i had healed better than any patient she has ever seen taking ppis. my nose and throat are still inflamed but significantly better. she was as thrilled as i was and just told me to keep doing what i was doing. she has asked me to keep a record of everything.
how did i approach this? i started combing the internet for all info far and wide and saw a naturopath a few weeks ago (who is wonderful and listens - we have had discussions about
every supplement and diet choice. she has listened to my concerns about
certain supplements and agreed with me or has argued her case well and i then changed my mind. great stuff!). she recommended several things that could've caused trouble for me if i had not researched her recommendations. but a good naturopath is no different than a good doctor. they listen, diagnose, make mistakes, help etc. one day these two modalities must be conjoined. but you must always listen to yourself and do research too.
again 8 days after this started and 3 days into the diet my laryngospasms stopped and never returned. within a week of strictly following the dropping acid diet - except when i eat too much fat for me - all stomach pain stopped, within two weeks the choking feeling stopped, and now six weeks later i sometimes only cough for a minute when i lie down on my 6" wedge and during the day have some awful phlegm moments but not more than a few hours in a day vs all day. i had 2 bad patches of a few hours. i still lose my voice from time to time but its much better. and if i ever have to hack up phlegm stuck in my throat, its only first thing in the morning for a minute or two. i don't know if i have an les issue. i was having terrible sharp ear pain a few days after the laryngospasms, now i still have to blow my nose a few times a day but no pain and ear stuffiness at all. no food gets stuck in my throat now. i burp about
15 minutes total in day especially when i drink water(again this only started with the zantac - don't know if its a coincidence). i might have a slight vagus nerve issue, but after reading "the chronic cough enigma" i see my symptoms are more consistent with acid reflux/lpr.
what did i do?
what worked and didn't:
i react to thing quickly so 6 and up on the list i added every other day to see if i had any negative reactions
yes, i've been going crazy spending time in the kitchen, but it must be done. i am not cooking for anyone else at the moment. luckily another member of my family has taken over all other cooking duties if they can get into the kitchen!
what worked:
1. everything on the dropping acid diet list (minus ginger - which caused my stomach - not esophagus or throat - to burn)
2. high ph water. oddly evamor killed my bladder. seriously bad bladder pain (no water ever gave me bladder pain before and it was because my diet was so pure and this was the only new thing i introduced it was easy to see this was the cause). but iceland 8.8ph water is fantastic and an acqua panna every so often is very nice :)
demulcents:
3. dgl licorice - enzymatics brand, sugar free - better than others because it has no sugar (licorice is sweet enough already) and it has the bonus of glycine!
4. 1 cup of slippery elm before bed (i have used the lozenges for years but not the tea) i think the starwest botanicals is not pure because i had an allergic reaction - swollen lips and tongue. too bad because it is organic. now i use the now foods one without problem.
5. fresh aloe vera between meals about
2 oz
i remove all the skin before i eat it. any thread that is yellow and green is a powerful poop inducer and a no-go for me. i use a potato peeler and knife and carefully pare it and i have had no diarrhea problems.
juices:
6. 8-24 oz of cabbage juice a day (green is better - higher in glutamine) and yes after about
4 oz i can barely take it. mixed with either 1/2 an apple or 1/2 a pear or straight or with parsnips (yes parsnips juice is nothing to write home about
, but it like celery has naturally occurring sodium which is good for the stomach). oddly cabbage juice causes phlegm for me when i drink it. but right after the phlegm stops. and overall the results are very positive. i make sure i use dulse and or kelp flakes with meals to hopefully keep my thyroid in balance. supposedly a healthy thyroid will not react negatively to tons of cabbage but you never know!)
7. juice of 1 carrot, 1/2 beet, 1 celery stick before protein meal (celery juice is so salty, but again sodium from food is good for the stomach lining as the wise bernard jensen said)
8. 1 cup of dandelion root and burdock root tea every other day before breakfast and after goat mineral whey. it's kind of a juice.
i've read that dandelion can exacerbate reflux for some people. but honestly combing through the internet i have not been able to find anyone but one person saying it triggered symptoms. for me it reduces phlegm which is great! but check with doctor before doing this. i only have 1 tsp of the root in a tea or 1 tsp of dandy blend a day.
reiterating: sodium from food not salt. other minerals.
supposedly sodium from food is great for the entire digestive tract. i introduced
9. mt capra goat mineral whey and colostrum 2 tbs every morning in cup of water - it tastes kinda like ovaltine. not great tasting. but its great for me so i endure. if i take it any other time during the day i get phlegm. it is not a whey protein supplement. it is a mineral whey. i started at 1 tsp and worked up to two tbs. it can cause gas and diarrhea if you take the full amount right right away.
and see number 7 on list
bernard jensen not perfect but quite brilliant has some very interesting observations about
healing the digestive track with sodium foods and cabbage.
gaviscon advance and sodium in food:
10. kelp noodles! awesome! gaviscon advance's main ingredients is sodium alginate. yes, the same alginate in kelp noodles is in gaviscon advance. i basically have no phlegm after any meal where i eat the noodles! they have a slight sea taste after you rinse them but they easily take on the flavors of the other foods you are eating. they are crunchy out of the bag and soften when mixed with heated food. anyway they are fantastic for my digestion!!!!! (aside: the raw food movement is in someways as techy as the sous-vide movement.)
11. gaviscon advance anise favored liquid from england. i started it 10 days after the lpr started. i only take it at night. the first few nights it made me gag and went into a coughing fit that subsided after i drank water. but by day 6 it no longer caused to me gag. i was concerned i would never be able to use it. i wasn't gagging because of the flavor. its a rare side effect. now that i overcame that, all i can say is it's fantastic. i take one tsp right before bed and usually like clockwork i wake up to take another teaspoon 4 hours later and then go right back to sleep. in the morning i usually clear my throat for a few minutes to not at all. some nights i don't wake up to take another teaspoon. when i don't wake up i have a bit more phlegm first thing in the morning.
toothpaste!
12. toothpaste is so important! i am using the old formula biotene and that has helped me tremendously. and i alternate with weleda salt toothpaste. weleda salt toothpaste has a really strong mint flavor. i am careful not to swallow it. these both increase mouth saliva. which keeps the reflux at bay. the old biotene is formulated with enzymes to increase saliva production and xylitol.
the new biotene formula is just horrible for me. it actually dried out my mouth! i tried dr squigle but my mouth thought it was meh. but for others it might be great. anyway i recommend trying toothpastes.
supplements
13. vitamin d. in 5 weeks i've gone from a level 27 to 45 since using 5000iu of thorne vitamin d drops a day. google elena lpr to see her journey with vitamin d and lpr.
14. i use digestive enzymes. i switch between 2 different types. digest gold and absorbaid. i am not sure anyone of these is the best. i find that using carrot celery and beet juice about
3 ounces before my high protein lunch helps along digesting.
15, pepzin. zinc & l-carnosine i only take two a day of the swanson brand. i don't take a dose high enough to cure an ulcer, but i find it soothing. the japanese use a much higher dosage of this combo as a prescript
ion and its successful about
65% of the time. which is high for any medicine! i think about
20-30% success rate without deadly side effects is what passes the fda.
16. i take 4 capsules of seacure throughout the day. its a stinky fermented white fish supplement that once you get past the stink i actually think is calming down my stomach a lot. it's coating it and giving me a bit of good fish oil in food form.
17. a chewable 1000mcg b12 by natural factor that i dissolve under the tongue. it's the only one i found that doesnt have citric acid, it has lactose still but that's better than citric acid. and i dissolve it just before i eat to avoid phlegm.
18. trisalts. sodium bicarbonate meets tums minus the sodium. for me only to be used in emergency like tums or sodium bicarbonate, but it really does the trick. it's composition is Calcium Carbonate 450 mg‚ Magnesium Carbonate 250 mg‚ Potassium 99 mg. it's a powder you mix with a glass of water. if you double the dose the magnesium might cause diarrhea. but you can also add calcium carbonate powder which is active ingredient of tums.
19. probiotics. daily i am using 1 bacillus coagulans, 1 culturelle, 1 florastor, 1/2 a packet of genestra replete and 2 weeks ago i added bio-k original (i love yogurt and happy to be able to have 3.5 oz a day). in 2 months i will cut out the genestra.
foods:
20. only using olive oil. coconut oil made my stomach hurt. haven't tried anything else. i started only being able to tolerate a tsp. i'm now up to 1 1/2 tablespoons a day.
21. every morning i use a coffee grinder and pulverize seeds. sesame, flax and/or pumpkin. i find this easy to digest and delicious. i don't pulverize them into butters. just until dusty and throw it my morning gruel - pearl barley(not pearled), oatmeal, cream of buckwheat or millet. with my third meal i throw chestnuts on top.
22. can eat 4-6 oz pieces of chicken or fish at a time. 2 weeks ago i tried an 8 oz piece of salmon and that was unpleasant. a week ago i tried to eat sardines and that was also rough. we know it's a slow process. and fats are definitely hard for me.
22. eat dandelion greens several times a week. mix it up with every green under the sun. the only raw greens i eat are the herbs parsley and cilantro as well as arugula and boston lettuce.
23. i use a nutrininja, but any blender will do (warning: my hand blender couldn't pulverize the beets), and i'm making chunky raw sauces for my kelp noodles with 1/2 a beet, a parsnip, 1 medium size carrot, 1 celery stick, parsley and a bit of water
for vitamins i use
besides vitamin d and b12
powdered buffered c not in capsules so i can take smaller doses. it doesn't hurt my stomach at all
lewis labs brewers yeast and lots of glutamine ( the only one with a sane amount of b vitamins - the other brands have way too much) i use 2 tbsp in a day.
wheat germ for minerals and b vitamins
rice bran for minerals and b vitamins
kelp and dulse flakes for iodine
teas
buckwheat tea aka sobacha you can find it in japanese or korean stores (i don't know the name in korean)
barley tea
chamomile i use egyptian because of flavor, but i think it's the german one that has been studied for its digestive benefits
i love rooibus, but i hate how it discolors my teeth.
dandelion but test it. may cause worse lpr, reflux symptoms for some. see entry above
burdock supposedly it might increase reflux for some but i haven't found any complaints online from individuals actually reporting burdock to increase reflux. see entry above
dandy blend - a yummy easy to make coffee/tea substitute
slippery elm
all these thing reduce phlegm for me
my 2nd to last drink every night for me is a true phlegm killer and it is delicious.
actually it has now become my last!
hot carob!
1/2 oat milk
1/2 almond milk (use whatever grain, nut, seed or dairy milk that is safe for you)
1 tbs of roasted carob powder,
a generous dusting of powdered ceylon cinnamon
sometimes i let the cinnamon stick lie in the liquid like 20 minutes before i add the carob powder and ceylon cinnamon
i whisk the ingredients in and then i slowly heat it up until its warm, not hot or boiling, so when i add honey at the end, i don't kill all its good properties. it's a satisfying desert and it helps my digestion and phlegm tremendously.
at the very end i add a light dusting of some cardamom (which fortunately doesn't bother me) and a light dusting of nutmeg (which fortunately doesn't bother me) and of course manuka honey.
what didn't work:
i get migraines.
amazingly 2g l-glutamine straight up in water caused migraines
seems fine if its in food
1 tea bag of fenugreek tea caused migraines
too bad
rx vitamins acid block which is the similar to gaviscon advance from england or canada but made in the us with the added benefits of dgl licorice and slippery elm. unfortunately for me it made me gag. i went into a gagging fit for several hours. i thought i had gone backwards in my healing. the next day i had a sore throat but it was better the day after. it is a rare side effect of gaviscon advance too. i'm always the person who gets the rare side effect. like i said the gagging did not subside after i drank water which you are supposed to do when you take it. it took several hours for the gagging to die down. again what happened to me is rare. the ingredients are fantastic. and shouldn't be a problem for 99% of lpr sufferers.
eco-dent bicarbonate cinnamon gum. it burned my throat. maybe it won't burn yours. an amazon reviewer who has lpr loves it.
garden of life acid defense is great. it helped me get over my gagging fit with the rx vitamins acid block, but its just about
the only thing i've ever put in my mouth whose flavor profile i could not overcome.
desert harvest freeze dried aloe vera. it is supposedly a great aloe vera product but did nothing for me at all! and if that didn't work i figure nothing else in a pill or bottle of aloe vera will, so i use the fresh leaves only.
tums - can i just say yuck! constipating, stuck to me teeth. rebound effect, but does help.
zantac 150 or 75 because of side effects. tingling, numbness and headaches.
when i get a migraine this isn't a great thing to do, but it works:
i take 500mg of magnesium carbonate
i get a bit of rebound effect and i get gassy, but it doesn't exacerbate the reflux and it kills the migraine!
all of the classic triggers are still my triggers
but its only a little over 6 weeks.
i have not lost weight which is a disappointing. i'd like to lose 15 lbs.
but a rash i had connected to some foods has completely cleared up. this was a mysterious rash whose origin didn't show up in either extensive allergy patch or blood tests.
this is so much information. i'm using multiple modalities. there isn't a silver bullet. but i'm improving. it's slow to heal from this. but i'm definitely healing. in a few weeks i am stopping the cabbage juice and the zinc l-carnosine. and we will see where i am at then.
if the herb is green and not a chili or peppermint i eat it ( i now don't go crazy eating basil because it is so closely related to peppermint).
in the future:
i am starting alfalfa green tablets today. they are not from the sprouts or seeds which both seems to have serious side effects if taken for a long period of time. let's see how this goes.
i want to try melatonin but can't get those laryngospasms out of mind.
i am looking into digestive bitters. perhaps in a few months as my throat improves. i'll try that urban moonshine chamomile blend recommended for pregnant women. swedish bitters look like a no-go because of the ingredient senna.
i am going to experiment with sous-vide cooking and making what i'll call gaviscon advance "faux caviar." i have all the ingredients. it is an elegantly presented gaviscon advance. look it up!
question:
has anyone found a brand of chicken stock or broth that doesn't have some irritating ingredient in it. or perhaps has anyone not been irritated by pacific foods organic chicken stock or better than chicken chicken stock?
Post Edited (lprsufferer) : 1/19/2015 1:38:45 PM (GMT-7)