AP Protocol for People With Swallowing Difficulties (No Pills)

[hopefulmama]

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

[Jan Lucinda1]

Minocycline comes in a tablet that I think could be chewed.  Doxycycline comes as a liquid.  So does Zithromax.  Minocin has to be swallowed as a capsule.  I don't know if this helps.

[mkbeeliever]

[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

This recent thread may be of some help to you
http://www.rbfbb.org/view_topic.php?id=4540&forum_id=1

I hope you are able to get started soon!

Blessings,
Michelle

[Cheryl F]

Andrea:

Glad to see you here.  The folks who participate on thsi forum are the greatest.  I just did a google search for “minocycline in suspension” and here is a link to the first hit that came up, there were many more.  http://www.rxlist.com/minocin-drug.htm

I know a woman who has been on AP for many years and has difficulty swollowing pills and she uses brand minocin, which is pelleted and she opens the caps and mixes into cream of wheat or apple sauce.

Cheryl

[Kim]

Hi Andrea, and welcome to the Roadback forum. 

I'm guessing you have Scleroderma?  If so, there are lots of success stories around here from people willing to share what has helped them…….me included. 🙂  I'm sure Cheryl has covered the AP basics with you, but just know you can vent, ask questions, whatever…..at any time, and there will be a willing ear from people that “get it.”

Wishing you all the best…….kim

[hopefulmama]

Thank you all so much.  I really needed to hear these positive things right now.  Overall I am doing better but my older brother just called, very worried, and hearing him that concerned about me made me start crying.  I told him all about the AP and how optimistic I am, but of course until I can actually get started I am also really apprehensive.

I also hope that whichever doctor ends up prescribing the antibiotics for me will work with me to find the dose that works because I have a long history of having bad reactions to medication and I really don't want to do anything stupid and make myself even sicker 🙁  I am a little wary of the Herxheimer reaction I keep reading about…

Yes, I do think that the diagnosis will be scleroderma.  My husband refuses to believe it until all of the tests come back.  The reason I think so is from what the radiologist said, trying to explain to me about which part of my esophagus is affected and the way he described it, it isn't achalasia or a situation where outside pressure is restricting the esophagus… instead, it is just the wave motion not working correctly in the lower esophagus.  Just not doing their job.  He said he thought it was autoimmune and then asked me if I get cramping or tingling in my hands.  And since I do have longstanding Raynaud's Phenomenon, it all kind of makes sense.

Is it just me or did you also find the diagnosis period a really difficult time?  I've been to various doctors for almost 9 months now feeling awful and getting test after test done, and none of them ever suggested that my symptoms could be related.  So many doctors have basically insinuated that my problems are all in my head and that I should go on an antidepressant.  Now that my esophagus has stopped working, this is the first time that anyone is actually taking me seriously.  I wish they had done so earlier, I might still be able to swallow solid food if I had gotten treatment in time.

I am praying with all my heart that the path toward wellness is at hand, and that I will get the appointments I need with the doctors who can help me soon.  Last night my three year old son sat in my lap for the 4th of July fireworks and I couldn't help wondering how many more years I would have to do that with him.  It makes me teary just to write about. 

Thank you so much for writing me back.  I feel like you are the only people who understand what I am going through right now.  Sorry if I sound overly emotional.  I am!  LOL 🙂

Warmly,
Andrea

[Kim]

Hey Andrea,

Now I've teared up and have a lump in my throat because your story is all too familiar.  Probably every Sceleroderma patient I know of has been offered anti-depressants because the doctor was unfamiliar with this bizarre set of symptoms and we go mis-diagnosed, or un-diagnosed. :headbang:  Somewhat validating what the doctor is seeing, is that depression is a part of the illness, but that is NOT the basic problem.  You can read my story in the link in my signature line of what all I've done to get better.  It's not quick and it's not easy, but it IS doable.  Please ask as many questions as you need to.  Trust me, someone will have dealt with it before and be willing to weigh in.

Take care…..kim

[Lynne G.SD]

Hi Andrea;
      Yup ! like our Kimmie,I am crying.Having wee ones affected by their moms' diseases turns me into a basket case.Now the good news my  sweet.You are not alone here and almost all of us with SD are doing just fine,thank you very much!.I do not post often as I am super super busy leading a life that would cripple most people that are well..I was in really bad shape when I stumbled onto this board.Today there is not a sighn of SD but as Kimmie,I do have Lyme to thank for this disease.
     I may be hard to reach most of the time as I rarely sit down until at least 22:00 hundred hours but any time you have questions some great soul here will find a fairly good answer for whatever problem might crop up.I joined up 11 years ago and if not for A friend,Richi and Ethel I likely would be 6 feet under a decade ago..
    For me,the only way out of this disease was a lot of study.I was a scientist by education and always used my body as my personal Guinea pig…get the feeling that I am not squeemish?  hehehe.Please forgive my terrible English  as I never studied it,I make excedingly bad mistakes.In other words,if you can't understand me ,let me know.
     By the way,you would never know that I have SD unless you take a very good look at my cuticles.
                      Lynne
               

[Mumof3]

Hi Andrea,

Sorry for taking so long to jump in here. I have been extremely busy with my three little ones and don't get on here as often as I'd like. Your post really hit home with me as I first starting having symptoms when my youngest was a baby. It was shortly after a flu shot as well. I was a complete and utter basketcase when I found out I tested positive for scleroderma. I thought it was a death sentence as well and was terrified I wouldn't live to see my kids grow up.

But fast forward to a year and a half later and I am doing incredibly well. Particularly in the last few months when I discovered I also had Lyme and started getting treatment for it. I also discovered I had some food intolerences (gluten, dairy, sugar) which needed addressing.

You sound like a fighter like a lot of us on here. Keep up the fight and keep the faith. I truly believe attitude is everything. When you get a chance, think about getting tested for Lyme as a lot of people with SD also have Lyme. You may also want to get tested for food sensitivities. Post often and ask lots of questions. The people on here are wonderful and so knowledgeable. They are what got me through some of the darkest days in the beginning.

Take care!

[hopefulmama]

Thank you so much, Mumof3.  It means so much to know that 1.5 years in, you are doing well.  Thanks to the good advice on the boards here and through private messages from you amazing ladies, I have already ordered the IgeneX test and found two doctors who will sign off on it for me. 

My main difficulty right now is how exhausted I am and how much my body hurts.  I know I have the aggressive diffuse kind because of where it is presenting on my body (my lower back) and I have never felt this kind of bone deep aching before.  My fear right now is that it will spread too fast before I can get on the AP.  My appt is in mid-August and I think it takes a few weeks before they get you started on treatment.  I don't know where my body will be by September.  Hopefully not too much worse.

It's tough to keep going when I'm this worn out, but my kids need me and I need to be there for them.  My husband has to leave on business tomorrow for three days and I don't know how I'm going to make it through… but I will.  You're right, I am a fighter and I am not going to give up on myself or the healing process.  I'm going to do whatever it takes.

Thank you so much for responding.  You do know exactly what I am going through right now, and that means the world.

[Kim]

Andrea,

That is ridiculous to have to wait until September for a prescription. :headbang:  Can you ask your family doc to write one, or dermatologist?  Print off the protocol from the “Home” section, “Physician's Pages” and they will see you're not asking for anything that they would be uncomfortable prescribing.  Minocin is what they prescribe for kids with acne all the time. 

Scleroderma can spread like wildfire ~ you don't wait and see.

Take care…..kim

[Mumof3]

Boy do I remember those days well! My husband also travels and it was tough in the beginning when he was away. One thing I learned was to accept some help which was very hard for me. But people were willing and I welcomed the break. But hang in there. You sound like you are a strong person and your determination will get you through it.

That's great that you are getting tested for Lyme. But I second what Kim says. If you can get on AP before August/September, I would definitely do it. Is there another doctor that can prescribe minocin before your appt. in August? What about your family doctor?

[hopefulmama]

Hi Kim and Mumof3,

I had thought about doing that… asking my GP to prescribe the minocycline (I can't take the minocin because of the swallowing problem) but then I read on Dr. F's website that they prefer you to not take abx before seeing them as it could affect the results of the testing.  I'm not sure if this would apply to me though since I have already tested positive for the mycoplasma?  But maybe it would affect things if they wanted to test again to find out what strain?

I guess I could call back the dr's office again (Dr F) and ask.  I think they aren't allowed to give advice or recommendations until I am officially one of his patients.

But, I hear what you are saying.  I'll get the bloodwork back for ANA and SD antibodies and assuming it is positive, maybe I will ask my GP if she would give me the beginning prescription for the minocycline. 

Feeling a little overwhelmed today.  Dr. just signed off on and is sending out Lyme testing kit though so I'll get that done on Monday.

Thanks for everything

[hopefulmama]

Here's from the website:

**Important message from (Dr.F), MD**
I often find that patients that come to see me for diagnosis and treatment for rheumatic diseases have already started on antibiotic treatment. Although this may be helpful to the patient, it would be best when applicable to have the appropriate work-up PRIOR to starting on antibiotic treatment. I am referring especially to the mycoplasma and chlamydia PCR test (genetic fingerprint).
Antibiotics may render this test negative and thereby often making useless this great diagnostic tool, especially in view of the fact that patients will be obliged to use antibiotics for several years exposing themselves to some potential toxic side effects. If you have already started antibiotics, you should continue and consider going off for 4 weeks prior to your visit to the Center, or your physician's office where these tests may be ordered.
If it is possible to do the above, you will increase your chances of confirming the infectious cause of your rheumatic disease. Even more so by doing the test prior too initiating antibiotic treatment, your insurance company will be more likely to authorize and pay for IV treatment if you have a positive mycoplasma PCR test.

[Maz]

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

Feeling a little overwhelmed today.  Dr. just signed off on and is sending out Lyme testing kit though so I'll get that done on Monday.

Hi Andrea,

You may have missed my post to you of last night on a different thread, but if you do find out you have Lyme when your IGeneX labs are returned, then Dr. F. may not be the doc for you, anyway, as he's not Lyme Literate and you'd need to see an experienced LLMD. That said, some folk will see Dr. F (for IV clindy and other rheumy drugs as a kind of one-stop doc for rheumatic disease and AP) and a LLMD (for abx combos to hit all the infections in the Lyme mix), like Maria, our other volunteer, for example.

All this said, would not hang around waiting to have labs drawn for Dr. F to get started on mino by any means. Whatever the tests reveal, mino works for scleroderma and works well, especially when caught in the early stages. 🙂

Can completely understand your feelings of being overwhelmed. Any young Mom would feel that way with 3 small ones (they're all adorable!!) and feeling healthy, let alone dealing with sclero. Rest when you can, research when you can and just take each day at a time. You have lots of supporters here to cheer you on and you will get well again…and the sooner you can start mino the better.

Peace, Maz

PS Just a suggestion, but I'd also set up an appt with an LLMD for about a month's time, because if the labs do return suspicious for Lyme, you would not need to wait to see this type of doc. You can always cancel the appt later, when results are returned, if needs be. 😉 It's just that LLMDs tend to be very backed up and it could be a while before you could get in to see one.

[Author]

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