AP Protocol for People With Swallowing Difficulties (No Pills)

[paper tiger]

Am wondering, with respect to difficulty swallowing… those of you who are in remission (or very near), have your esophageal difficulties resolved themselves?

[hopefulmama]

Paper Tiger,

Have you noticed improvement since you went on the Doxy?  We have the same symptoms… hoping for good news 🙂  I'm looking to get on the AP as soon as I can.

[paper tiger]

None whatsoever, though I've been really lazy with AP. I've missed pills for days at a time and I only really had a doctor put 2 and 2 together (that my swallowing problems are SD-related) a few weeks ago. So now I'm being better about taking my pills and I'm hoping that eventually, my esophageal problems at the very least improve a bit.

[hopefulmama]

Oh, I see.  I'm not really expecting the minocycline to help my esophageal motility – I kind of assumed that once the muscle stops functioning, it probably isn't coming back.  I'm going to see an esophageal specialist for that part.

Has your SD gotten worse since starting the doxy?  My greatest hope is that when I go on AP, it will at least stop symptoms from worsening.  If I can simply stop the progression of the illness and stick around for my kids, that will be a miracle.

[paper tiger]

It hasn't changed at all, actually. I have shiny skin around my cuticles, but apart from that, it's really just a loose lower esophagus and Raynaud's. The radiologist explained that my food passes through my upper esophagus just fine and then just drops once it hits my LES, because it's too wide to actually squeeze the food down.

My SD hasn't been very aggressive, and for that I count my lucky stars. I'm just keeping an eye on my body, getting every small thing checked out. Whereas in the past, I'd put off a doctor's appointment, now, if anything feels off, I check in with my rheumatologist.

[Kim]

[user=2523]hopefulmama[/user] wrote:

Oh, I see.  I'm not really expecting the minocycline to help my esophageal motility – I kind of assumed that once the muscle stops functioning, it probably isn't coming back.  I'm going to see an esophageal specialist for that part.

Has your SD gotten worse since starting the doxy?  My greatest hope is that when I go on AP, it will at least stop symptoms from worsening.  If I can simply stop the progression of the illness and stick around for my kids, that will be a miracle.

Whoa, let's set those goals a little higher! :roll-laugh:  Stopping the progression is Step 1, but reversal of symptoms is possible too.

I had swallowing issues early on that have cleared up as I got better.  Remember, SD is a connective tissue disease, so it could be any connective tissue that works in conjunction with the esophagus that has collagen build-up causing the problem.  My fibrosis has always been primarily muscle fibrosis, and when you swallow a lot of muscles are involved.  The use of Neprinol and sauna have done wonders for me to thin blood, dissolve fibrosis, reduce inflammation, and improve circulation.  These are all things that have to be addressed with SD.

An esophageal specialist may likely suggest stretching your esophagus which I personally would not do until I had exhausted every other option first.  Most doctors don't understand that every procedure could have scarring consequences for people with SD, so even if you had temporary relief, it could leave you worse off in the longrun.  Always better to treat the source and not the symptom, if possible. 😉

Take care…..kim

[hopefulmama]

Kim,

I love your positivity!  It just just what I needed today 🙂  Thank you.  I'm so happy to know that your swallowing troubles improved as the disease began to go into remission… that is very encouraging. 

Based on your recommendation I went for my first infrared sauna today, and I could really tell afterward how much difference it made in the aching of my muscles.  How much water do you typically drink after going?  I was there for 20 minutes and left a little light headed, even though I drank 2 glasses of water after.  Maybe it will just take time for my body to get used to the process.

Hoping the neprinol will arrive tomorrow.  Read both Scammell books cover to cover over the weekend and felt really encouraged.  I just wish I could meet with Dr. F tomorrow, rather than a month from now.  Tomorrow I'll get the Lyme testing done though, so that will help… and going to get thyroid labs back this week as well so maybe improving my thyroid will improve some symptoms too.  Did you say you have Hashimoto's also? 

Hope you have had a wonderful weekend.  I spent most of last night reading through the Bodri book about natural things to assist in scleroderma healing process, thank you so much.  Ordered the “Unique E” to go along with the neprinol 🙂 

Putting my whole heart into this process!  I believe it can and will work.  I just can't go onto the Inspire board anymore for now, because it makes me too sad.  So thankful for the kindness of everyone on this board.  You are a band of angels.

[jlane1111]

[user=2523]hopefulmama[/user] wrote:

Hello,

This is my first post.  I want to thank Cheryl F so much for explaining the AP to me and giving me the encouragement to believe that rheumatic disease is not going to be a death sentence for me.  I am a 34 year old mother of three kids under the age of five, so this is obviously important 🙂

I wanted to ask for advice about taking minocycline or other antibiotic for people with esophageal difficulties.  I have been diagnosed as of last week with a “lazy esophagus”, or esophageal motility disorder.  I am on a possibly permanent liquid diet – can get down thick soups but no solids.  They saw on x-ray barium swallow that they were literally getting stuck in the lower esophagus due to lack of coordinated wave motion.  I will be seeing a doctor specializing in the esophagus but honestly, have never been able to swallow a pill in my life and have always chewed them.

Is there anyone on the forum who could comment about getting started on the AP with GI troubles like these?  So far the GI and Raynaud's are my only issues, and I am determined not to let the esophageal trouble stand in the way between myself and getting treatment that will enable me to be the mother my kids need.

Thank you so much for your time!

Sincerely,
Andrea

Hi Andrea

My husband has significant swallowing difficulties with the scleroderma and is on a liquid diet. We have yet to do any barium swallows. I would be interested in hearing what treatment or direction your doctor is proposing.

Jo 

 

 

[hopefulmama]

Hi Jo,

I will be very happy to report back to tell you what the esophageal doctor says.  Kim warned me not to let them stretch my throat as it may cause later troubles with scar tissue.  I would rather continue on the liquid diet indefinitely rather than deal with something worse down the road. 

However, I do think there may be some hope here as the dr I am seeing has invented a medical device that can manually control the upper esophageal sphincter and is working on a comprehensive swallow propulsion system.  I'm not sure whether I will be eligible for any of these things but it is very exciting to me to hear that he is working on this kind of invention, and maybe someday that can help people like myself and your husband.

I have faith that the AP is going to really help the rest of the disease, at least stopping its progression, and maybe this esophageal dr can help get us the rest of the way back to “normal” 🙂

Take care and I'll keep you posted.
A

[Kim]

Andrea and Jo,

My mother-in-law was hospitalized recently with food in her lungs from swallowing problems.  The swallowing-specialist was having her tuck her chin in towards her chest before swallowing to open up the esophagus more.  I tried it with water and it does make a difference so you may want to experiment and see if it helps at all for you.

Take care…..kim

[hopefulmama]

Jo,

I wanted to let you know that I found out about a process that my esophageal doctor has written a lot about that can help swallowing even in patients with systemic scleroderma.  It is non-invasive and shown to be effective in several studies. 

I am enclosing information that you may want to share with your doctor or maybe find someone in your area to consult with.  Hope this helps.  I myself am very excited that my doctor specializes in this and I now have great confidence that someday I may be able to eat solid food again 🙂

Successful Treatment of Esophageal Dysmotility and Raynaud's Phenomenon in Systemic Sclerosis and Achalasia by Transcutaneous Nerve Stimulation: Increase in Plasma VIP Concentration  Author: B. Kaada^a Affiliation:   ^a Laboratory of Clinical Neurophysiology, Rogaland Central Hospital, Stavanger, Norway DOI: 10.3109/00365528708991971 Publication Frequency: 12 issues per year Published in: Scandinavian Journal of Gastroenterology, Volume http://www.informaworld.com/smpp/title%7Edb=all%7Econtent=t713690387%7Etab=issueslist%7Ebranches=22#v2222, Issue 9 November 1987 , pages 1137 – 1146

Abstract Dysphagia has been successfully treated by low-frequency transcutaneous nerve stimulation (TNS) in two patients with achalasia and in six patients with systemic sclerosis. A 30- to 45-min stimulation session was followed by augmentation of peristalsis in the lower half of the esophagus and relaxation of the gastroesophageal sphincter, with relief of dysphagia. The sclerotic patients were also relieved of invaliding Raynaud's phenomenon. One 30-min daily stimulation session, and later one session every 2nd or 3rd day, was sufficient to prevent relapse. After months or years of TNS treatment the stimulation could in three patients be withdrawn with no recurrence. A stimulation session produced about 30% increase in plasma vasoactive intestinal polypeptides. Activation of this neurornodulator is considered to be the cause of the beneficial effects on dysphagia and Raynaud's phenomenon. Keywords: Achalasia; dysphagia; esophageal sphincter; systemic sclerosis; transcutaneous nerve stimulation; vasoactive intestinal polypeptides
_________________________________________________________________________________________
Transcutaneous electrical stimulation versus traditional dysphagia therapy: a nonconcurrent cohort study
OBJECTIVE: The purpose of this investigation was to critically evaluate the efficacy of electrical stimulation (ES) in treating persons with dysphagia and aspiration. STUDY DESIGN: Nonconcurrent cohort study. METHODOLOGY: The charts of 40 consecutive individuals undergoing ES and 40 consecutive persons undergoing traditional dysphagia therapy (TDT) were reviewed. Pre- and post-therapy treatment success was compared utilizing a previously described swallow severity scale. A linear regression analysis was employed to adjust for potential confounding variables. RESULTS: The swallow severity scale improved from 0.50 to 1.48 in the TDT group (P < 0.05) and from 0.28 to 3.23 in the ES group (P < 0.001). After adjusting for potential confounding factors, persons receiving ES did significantly better in regard to improvement in their swallowing function than persons receiving TDT (P = 0.003). CONCLUSIONS: The results of this nonconcurrent cohort study suggest that dysphagia therapy with transcutaneous electrical stimulation is superior to traditional dysphagia therapy alone in individuals in a long-term acute care facility.

[jlane1111]

[user=2523]hopefulmama[/user] wrote:

Jo,

I wanted to let you know that I found out about a process that my esophageal doctor has written a lot about that can help swallowing even in patients with systemic scleroderma.  It is non-invasive and shown to be effective in several studies. 

I am enclosing information that you may want to share with your doctor or maybe find someone in your area to consult with.  Hope this helps.  I myself am very excited that my doctor specializes in this and I now have great confidence that someday I may be able to eat solid food again 🙂

Successful Treatment of Esophageal Dysmotility and Raynaud's Phenomenon in Systemic Sclerosis and Achalasia by Transcutaneous Nerve Stimulation: Increase in Plasma VIP Concentration  Author: B. Kaada^a Affiliation:   ^a Laboratory of Clinical Neurophysiology, Rogaland Central Hospital, Stavanger, Norway DOI: 10.3109/00365528708991971 Publication Frequency: 12 issues per year Published in: Scandinavian Journal of Gastroenterology, Volume 22, Issue 9November 1987 , pages 1137 – 1146

Abstract Dysphagia has been successfully treated by low-frequency transcutaneous nerve stimulation (TNS) in two patients with achalasia and in six patients with systemic sclerosis. A 30- to 45-min stimulation session was followed by augmentation of peristalsis in the lower half of the esophagus and relaxation of the gastroesophageal sphincter, with relief of dysphagia. The sclerotic patients were also relieved of invaliding Raynaud's phenomenon. One 30-min daily stimulation session, and later one session every 2nd or 3rd day, was sufficient to prevent relapse. After months or years of TNS treatment the stimulation could in three patients be withdrawn with no recurrence. A stimulation session produced about 30% increase in plasma vasoactive intestinal polypeptides. Activation of this neurornodulator is considered to be the cause of the beneficial effects on dysphagia and Raynaud's phenomenon. Keywords: Achalasia; dysphagia; esophageal sphincter; systemic sclerosis; transcutaneous nerve stimulation; vasoactive intestinal polypeptides
_________________________________________________________________________________________
Transcutaneous electrical stimulation versus traditional dysphagia therapy: a nonconcurrent cohort study
OBJECTIVE: The purpose of this investigation was to critically evaluate the efficacy of electrical stimulation (ES) in treating persons with dysphagia and aspiration. STUDY DESIGN: Nonconcurrent cohort study. METHODOLOGY: The charts of 40 consecutive individuals undergoing ES and 40 consecutive persons undergoing traditional dysphagia therapy (TDT) were reviewed. Pre- and post-therapy treatment success was compared utilizing a previously described swallow severity scale. A linear regression analysis was employed to adjust for potential confounding variables. RESULTS: The swallow severity scale improved from 0.50 to 1.48 in the TDT group (P < 0.05) and from 0.28 to 3.23 in the ES group (P < 0.001). After adjusting for potential confounding factors, persons receiving ES did significantly better in regard to improvement in their swallowing function than persons receiving TDT (P = 0.003). CONCLUSIONS: The results of this nonconcurrent cohort study suggest that dysphagia therapy with transcutaneous electrical stimulation is superior to traditional dysphagia therapy alone in individuals in a long-term acute care facility.

Hopefulmama

This sounds great. If you could email me your doctor's name  I would love to follow-up to see if this could help my husband.

Many thanks!

Joanne 

[Author]

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