Home Forums General Discussion Help for GERD from Scleroderma folks plz

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  • #464053
    Mountains
    Participant

    Our 12-year-old daughter’s first Scleroderma symptom was acid reflux. She started with the acid reflux when she was 8 years old. At the time we had no idea that she had Scleroderma and that it was the cause of her GERD, so we had her on everything OTC, Prescription, Alternative, and Natural for the reflux. Then we did diet changes (GF/DairyFree/Garlic/Onion/Tomato/Chocolate/CitrusFree)and enzymes including HCL. No eating after 7pm etc. Nothing has worked. At this point, she has only been on AP for a month and the Raynaud’s is gone which I am VERY grateful for but has anyone with severe GERD gotten rid of that symptom over time on AP? I am very concerned about the damage being done nightly and potential Barrett’s in the future. She is up every night from anywhere around 9 or 10pm to 3 or 4am with horrific acid. The pain is terrible for her. She doesn’t lay down during this time. She sits up the whole time. Then she will pass out from exhaustion around 4am and sleep until 1 or 2pm the next day. This has been our lives since last July. Over time the GERD has built up to this level. Little by little, it has taken over our lives. She sleeps with me (this started when she got really sick w Sclero symptoms a few years ago) of course this means I get little sleep because I can’t sleep in like she can. Not great for my fight with Cancer but what can we do? I just pray that the AP will help her with the GERD. If anyone has resolved or greatly improved the acid reflux once the AP kicked in, plz share your experience. I could use the encouragement. Also, although I know the cause of the GERD is the collagen build up in the esophagus, if any enzymes or supplements have been helpful for your reflux plz share the name. I’m willing to re-try things. Thank you so much!

    #464054
    Martina
    Participant

    Hi Mountains. I’m up late and can’t sleep. I’m so sorry to hear your little one is suffering so much. This is a lonely place to be as a mom of one of these angels… Have you tried to elevate the head of her bed with some wood blocks? I’ve been making my son some homemade sauerkraut and giving him a couple of spoonfuls at each meal when he’s home. I’m hoping to get more probiotics in him with his food. Bovine colostrum helps overall with various symptoms. I’m not sure about HCL. I know there’s a lot of talk about low HCL causing GERD, etc, but I thought that was with older people. HCL does not agree with my husband at all. Could that possibly be too much acid for her?

    #464055
    Mountains
    Participant

    Hi Martina. The HCL was just in the list of things we have tried. She hasn’t been on it for months. She is on Probiotics now and I too try to do some fermented foods weekly. Bubbies sauerkraut is our favorite. Of course, I couldn’t use any probiotics or fermented food for years. The only reason I give them to her now is that she is on AP and as long as she is on antibiotics SIBO (Small Intestinal Overgrowth) will not be a problem. Sierra had gotten food poisoning in Costa Rica at age 8 when this all started and got Small Intestinal Bacterial Overgrowth and H. Pylori as a result. With SIBO, you have too much bacteria in your small intestine and you need to bring those numbers down before taking probiotics to help heal the lining. She only just got her first negative SIBO test back a few months ago. The H. Pylori we got rid of last year. It all took a few years to resolve and with Scleroderma, SIBO and H. Pylori are more common than with the general public. As you probably already know, it is because the slow digestion allows for fermenting to take place where it shouldn’t and for much too long so pathogens thrive. Looking back I feel the reason she was the only one in the group and family to get food poisoning that trip is because the Scleroderma had already slowed her digestion down to the point that the bacteria in food was fermenting longer than normal and that slight disadvantage allowed a serious case of E.Coli to brew. She had an Endoscopy done about 2 months ago. It showed a healthy looking stomach, no H. Pylori seen or on biopsy. As I mentioned the SIBO breath test finally came back clean after 3 years of treatment. The only thing they did see was some damage at the base of the esophagus. A slight change in the cells. She is too young to do the 24 hour acid monitoring test and they didn’t do the pressure test to see if the Lower Esophageal Sphincter is closing properly and with enough pressure. I am glad they gave me pictures and said they see a really normal and healthy looking esophagus except for that slight damage. As I said earlier, we have tried Proton Pump Inhibitors both OTC and prescription and never saw a difference. I gave them to her reluctantly because of the research I had done on the dangers and the fact that they aren’t meant to be given long term. That is why I went back to asking the RB folks about digestive enzymes. It makes sense that if food is fermenting longer, helping the body break it down would lessen the acid. I go round and round trying to figure it out but the wild card is the collagen. Perhaps nothing works because the collagen is changing the structure of the Esophagus or Lower Esophageal Sphincter (LES), perhaps in a way that can’t be seen on camera yet. I still haven’t ruled out the idea that this extra collagen may affect the enzymes released by the pancreas or gallbladder. In that case, looking for the right combo and doses of enzymes should help. Although we did do enzymes for a year before stopping, it was at half the dose on the bottles. This was because of her age and weight. Perhaps she needs an adult amount. As I said, round and round. Thanks for the support. Hope your boy is having a good week!

    #464056
    Martina
    Participant

    He’s doing better. The z-pack helped even though the coughing didn’t seem to be bacterial.
    The small amount of his sputum expectorated was clear. I started to wonder if perhaps he too was aspirating causing the inflammation in his bronchi. The head of his bed is on wood blocks to try and help prevent aspirating. I’m trying to get his dinner over by 7:00 but he always wants to snack before he goes to bed :/

    Is you doctor open to putting your daughter on minocycline?

    #464057
    Luck20
    Participant

    So sorry to hear your daughter is going through this. (You too) Has she tried sleeping in a recliner? She can lay on her side even in it and it might really help with the reflux.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

    #464058
    Mountains
    Participant

    I forgot to reply about the bed. Yes, it’s elevated and she is also on a wedge. The doctor is doing Azithromycin with Alinia pulsed in to start. Once she is older or if we can’t find a combo that works well soon I would definitely be up for trying Minocycline even though she is only 12 and still has several baby teeth (some on sides and all her molars are originals). We start the Alinia in about a week. Even though it’s very early I am hopeful because of seeing the immediate impact on resolving the Raynaud’s. It means we are on the right track. Now the hard part, fine-tune meds, be patient, and understand there will still be setbacks throughout this journey to healing!

    #464059
    Suzanne
    Participant

    I have always found The People’s Pharmacy to be a great resource. A quick check found this article, but I’m sure there is more info elsewhere, too: https://www.peoplespharmacy.com/2019/01/07/will-apple-cider-vinegar-cure-your-heartburn/ ACV gave my mother terrible heartburn, though! There are also a lot of comments from people on things they found they to be their causes of heartburn and what worked for them.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #464075
    Mountains
    Participant

    Thanks for the article Suzanne. It was very kind of you to take the time. I appreciate it. Yes, we have tried Baking Soda and it works for about 20 mins, then the acid continues. We also tried the ACV but you are right about that burn. When you are already damaged from years of acid you just can’t swallow the ACV even when diluted. We tried ACV pills to try to avoid that burn and HCL pills since the idea is to build the stomach acid. Everything we have tried does seem to give her very short-lived relief, like maybe 20 to 30 mins or sometimes we see the acid is pushed back to start later at night but nothing has really worked. I am back to the drawing board although now that I’m back to thinking things through, the fact that it did have some effect, although small means maybe we are on the right track. Three of the top GI Specialist in the area have been useless in helping us figure this out. I feel I really need to understand what is happening at night during the Migrating Motor Complex Phase. Why is the stomach acid being kicked up? Sleep is a rest and repair phase of digestion so is the problem that she doesn’t have enough enzymes and acids to clean and repair? Although we have tried replacing them for long periods of time we were giving her child doses. Now she is 12, skinny but 12, perhaps she is so deficient that she needs adult dosing. Also, which enzymes are the repair ones? Are they different than the ones for digestion, if in fact there are ones that do the repair? The questions also lead to trying to understand how much of the reflux is affected by the Migrating Motor Complex cleaning waves that naturally occur throughout the day and more vigorously at night. Over time in Scleroderma the collagen delays or interrupts the natural movement of the esophagus and entire digestive tract so this would probably not be affected by increasing acid or enzymes. You will see I have more questions than answers. I need my own personal scientist and test group. LOL! I have to keep trying. Perhaps increased enzymes will be part the answer so we’ve started trying it yesterday. I gave her 2 tablets at each meal of high-quality digestive enzymes. I will post what works so maybe it will help the next person dealing with horrific reflux. Thanks to you all!

    #464076
    Suzanne
    Participant

    Maybe it wasn’t just h. pylori? From Dr. Mirkin:
    https://www.drmirkin.com/morehealth/g122.html

    Also, I know you already follow some strict diets, but maybe there is still something that doesn’t agree with her that causes this. My family goes through bushels of bananas, and they refuse to believe how much I suffer if I eat one. Everybody is different.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #464077
    Suzanne
    Participant

    Another cause from Dr. Mirkin:
    https://www.drmirkin.com/morehealth/9065.html

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #464078
    Suzanne
    Participant

    Last one from Dr. Mirkin re:scleroderma (I get caught up every time I visit his site!):
    https://www.drmirkin.com/morehealth/g163.html
    “I prescribe minocycline 100 mg twice a day (some doctors use higher doses). I tell my patients to restrict sunlight as it increases their chances of being sunburned, take the pills with plenty of water and eat afterwards to push the pills down into the stomach as they can cause an irritation of the esophagus, and to stop the medication and call me if they suffer diarrhea or other possible side effects. 50% of people with localized scleroderma or morphea have blood evidence of infection with Lyme disease. Many can be cured with a long course of doxycycline, azithromycin or clarithromycin. However, this is controversial and not accepted by many doctors; discuss it with your doctor.”

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #464079
    Mountains
    Participant

    Good point Suzanne. It could be another bacteria or parasite for that matter. We have done parasite testing but as you know that is very limited. If it is another bacteria I’m afraid I wouldn’t even know if we could test for it but maybe the fact that she has started the Azithromycin and will be starting the Alinia it may help kill the bacteria if that is the problem. I also know that Erythromycin is a prokinetic and Azithromycin is in the same group of drugs so I wonder if giving her the Azithromycin later in the day or in the evening would be best so it can help gastric emptying or as I mentioned earlier, help the natural cleaning waves (Migrating Motor Complex) that the slow build-up of collagen or bacteria might be affecting. Actually, now that I think about it the Erythromycin has to be given at about 50mg, an extremely low dose so that it doesn’t act on the immune system as an antibiotic but rather solely as a prokinetic agent. Our next Doctor visit I’m going to ask about pursuing this low dose antibiotic and see if that help in gastric emptying will help her GERD. Thanks so much for the input. There is power in numbers and many times it’s the collective thoughts that lead to the answer.

    #464080
    Lynne G.SD
    Participant

    Hi Mountains;
    I had bad SD with all the problems that come with it but have been just fine for almost 16 years with partial remission for the previous 4.It took 2 years to get my body back to normal and almost 4 to uncurl my hands and get full finger dexterity.I did have terribly slow motility which led to bloatin,gas and gerd.I tried many enzymes before hitting the right one for me and this was some time before I found out about AP
    The best enzyme mix I found was made by GFNC,there are at least 16 different enzymes,one for cellulose,one for dairy etc. etc.Within 2 weeks there was a big difference and at the one month mark I had no symptoms at all.Food that sits in your stomach starts to putrify which causes gass.The enzymes made the food move to the gut so much faster and since there was nothing in my stomach by the time I went to bed I did not have much reflux and eventually solved that problem by taking 1/2 teaspoon of soda in water just before bed.PROBLEM SOLVED!

    #464081
    Lynne G.SD
    Participant

    Forgot to mention that I take 2 capsules with a meal and one with a snack.The big blue or beige bottle of 240 capsules only costs around 30$.Hubby uses them also because as we get older the body makes less and less digestive acid and this is why you will see old folks eating Tuma like candy.

    #464082
    Luck20
    Participant

    My reflux has greatly improved, but at its worst, things like cucumbers, beans, potatoes and even some fruits would really set it off. I closely followed the Plant Paradox diet for a long time and I did notice some of the same foods they tell you to stay away from, really provoked my reflux. Its possible some people are sensitive to lectins and the reflux might be a sign of that. I know its a crazy, restrictive diet, but it might be worth checking out if even just for awhile. Months later I started to reintroduce foods and many of them no longer seem to provoke my reflux now. I also notice that I no longer ever feel bloated regardless of what I eat.

    Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
    Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

    Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

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