Earache

[hawk6868]

My wife Cindy (61 years of age) has CREST syndrome (1991), SD is most severe. She started on 200 mg Minocycline (2004) with Dr S. She made great progress, Lung capacity incresed from 51% to above normal (2009).

Then (2011) she developed Gastroparesis and Esophageal dysmotility. It takes 14 hours for her stomach to empty. She is complaining of a tightness in the upper part of her Esophagus.

Now both ears started aching after she eats. They continue to ache most of the day.

Has anyone else had this earache problem? Could the Gastro or Dysmotility be causing this problem?

Has anyone ever solved this problem?

Cindy has recently switched to 200 mg of Doxycycline from Minocycline just to lose some black spots on her face, but this was after the gastroparesis had already started. Dr S has also started giving Cindy 5 days of Clindamycin IV’s every 6 months.

How did she get Gastroparesis after taking 200 mg Minocycline for 7 years? Does the Minocycline lose its effectiveness over time? Do we need to find a Dr that prescribes multiple antibiotic treatments? Dr S is a great doctor and person, but I don’t think he will prescribe multiple antibiotics.

If we should be looking at multiple antibiotic solutions does anyone know of a good Dr for this? We are currently in Texas but could travel anywhere in the U.S.

Thanks!

[Maz]

@hawk6868 wrote:

How did she get Gastroparesis after taking 200 mg Minocycline for 7 years? Does the Minocycline lose its effectiveness over time? Do we need to find a Dr that prescribes multiple antibiotic treatments? Dr S is a great doctor and person, but I don’t think he will prescribe multiple antibiotics.

If we should be looking at multiple antibiotic solutions does anyone know of a good Dr for this? We are currently in Texas but could travel anywhere in the U.S.

Hawk, so sorry, but haven’t heard of the ear problem with SD here, per say, but as the saying goes around here, “Anything is possible with these diseases.”

Yes, after 5 years, it is often considered appropriate to rotate to a different tetracycline – either doxy or tetracycline. This is mentioned under #10 at the following link regarding plateaus and non-responders on the main website:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

“10. Does the drug need to be rotated? Antibiotic therapy is a long-term therapy, months and years in most, – even for a lifetime in some. After 5-6 years, a patient can become tolerant of an antibiotic. Rotating to another antibiotic even within the same drug class can keep response optimal and avoid plateaus.”

So, what Dr. S. has done, changed Cindy’s protocol up to doxy, is not a bad idea for a bit. However, this said, sometimes later into treatment other opportunistic bugs within one’s pathogen load may rise to the surface and many experienced AP docs will add in a second and sometimes third abx. This may include, for instance, a macrolide (like biaxin or azithromycin to be taken in-between clindamycin rounds and not at same time) and an anti-fungal (is Cindy using probiotics?), or an anti-fungal and an azole (like tinidazole or flagyl).

There is an excellent AP doc in Lufkin, TX, I can send you info on. As far as I know, she does not use IV clindy, so you may need to continue seeing Dr. S. for these, but she is experienced in using oral combos and is especially keen on seeing her patients on special diets that remove all gluten, dairy and sometimes red meat. This AP doc in TX is the “most experienced” in the lower mid-west, but you’d likely be looking at traveling to the west or east coasts otherwise.

I have heard of Dr. S. prescribing azithromycin in addition to a tetracycline, so it may be worth asking if he would add this to your wife’s current doxy regimen as a boost and to see how she goes, before considering extensive travel to another new doc. May just save you some angst in this regard. Dr. S. trained under Dr. Brown and so he should be pretty aware that Dr. Brown used a number of anti-microbials in addition to the tetra class of abx.

I will send you a PM (private message) with Dr. R. K’s contact info. To retrieve it, just click above beside your User Control Panel, where it will say (1 new message). Hope this helps a bit, Hawk. Maybe some SDers will chime in with their personal insights for you.

[hawk6868]

Thanks MAZ we will check with Dr S and Dr R. K. !!!

I will report back on Cindy’s progress.

[Maz]

Thanks, Hawk…look fwd to hearing back on you go! Best to Cindy from your RBF friends! 🙂

[marypart]

I started with an AP doctor because I developed foot pain and terrible pain in the calf and thigh muscles of my left leg… this was after having had bad shoulder and neck pain.

Mine turned out to most likely be Lyme or Bartonella– both tick borne infections– but my doctor also said it could have been chronic strep infections.

At any rate, about 4 months into treatment I developed a terrible gastroparesis and dropped 17 pounds in one month. I could only eat a tiny breakfast and a few bites for dinner. I also had bad bouts of constipation.

I got better in about 3 months with some help from my GI but also help from my Lyme doctor. Lyme is a known cause of gastroparesis.

Things that helped me: Miralax twice a day; Bethanechol (an old drug that sometimes helps with gastric emptying, although most people use Reglan now); tums, prilosec and/or mylanta for acid reflux– between meals; digestive enzymes and betaine hcl with meals to help digest food. And then, when I kept getting esophageal spasms– Levsin.

Also– I was treated for h. pylori– the cause of ulcers– because my doc thought my heartburn could be that, even though I never tested positive for it.

The thing that really got my stomach moving… was Zitromax. I was on antibiotics for Lyme, and my doc gave me Zitromax because it helps– as a side effect– gastric motility.

I used a lot of liquids or very chopped food– just to make things easier. I stayed away from gluten for awhile.

Also, when I was down to nothing but heartburn, my brother told me that his heartburn was allergy related so I started taking 1-2 benedryl at night at bed…and that actually took care of the heartburn.. Now I only get it if I eat too much tomato.

So, now, maybe once or twice a month I take miralax, but other than that I’m off all meds and the gastroparesis is gone.

Hope this helps.
Mary

[cavalier]

“Then (2011) she developed Gastroparesis and Esophageal dysmotility.”

Hi Hawk – This is something that can happen either from SD or from Lyme it can be hard to know but in either event since i recently went into remission in my blood markers from SD yet I still got small bowel partial obstruction felt to be caused by dysmotility doc’s have gone back & forth it is from my lyme which it could be or from SD which can also do this – in either event I happened to get this while on Zithromax but I was also on 2 other AP’s by mouth when I had to abdandon all AP end of Aug. I have only started back in with Zith only by mouth since last week while waiting for the IV’s to get started but stomach is still ot always the best. We think it means it calls for a revamp in which AP to use and to go IV route for a bit to bypass the GI more. I do know Dr S. will change up AP – he did for me i was on mino & after 6 months had to change he agreed with me it just stopped working for me that is when he gave me zithromax M,W & F. For me having Lyme though I need to cover this from more than one angle to get more help in battling lyme to get that down.
Bottom line is yes you can get a flare up and you can get less help after a time being on one certain AP.
Glad you have some options Dr S is great no doubt – one thing just to confuse things some of us who have a Rheumatic disease can have also Lyme and not always have it diagnosed – not all of us for sure but there are a few on here who had SD only to find out they have Lyme I got the SD into remission but the Lyme is still ongoing. Lynnie i believe is another. Now others only have SD I dont know in your Wife’s case but i felt i needed to be sure as I felt in my gut I might have had Lyme due to I knew I had 2 ticks back in 05 & one left a bull’s eye rash – my doc blew me off saying no Lyme in TN – he was wrong and the CDC does not agree with him but some doc’s dont recognize Lyme. For me a big part in why I got SD to begin with was due to my immune was just haywire & the cries for help if not addressed properly then over time things get worse to more diseases coming forward – Lyme is called the great imitator in mimicking other diseases. For me I am better off knowing this so i can work on getting fully better. Hope i am not confusing you.
For some of us we have more than one thing going on – it’s hard to believe but it can/ does happen sometimes – others just truly have the one disease which is plenty I agree. 🙂
Best – Jill Lyme

[cavalier]

Forgot to mention my left ear aches alot but I have no idea if related or not – although a few yr’s back this same ear had a extra piece of collagen in the ear drum this was before I knew I had SD but this was going on during that time, it was removed. The recent earaches I dont know if it is simply tension related to my jaw or not. I had a good ENT doc but she retired last yr but that maybe a good place for your wife to get it checked out or just see how it goes. I think of the body it’s possible to make scar tissue or build up of fibrin or collagen almost anywhere. New excaberations can indicate as Maz says it’s time to consider changing AP. That’s a challenge for many of us. The ear could be as simple as builld up of wax, see if a ENT doc can pinpoint anything.

Best Jill Lyme

[hawk6868]

Thank you very much Jill for both of your replies. My wife Cindy and I found them very interesting. We did visit a good ENT Doc in Ft Worth. He did look in both of Cindy’s ears and didn’t find anything wrong, but did see purple streaks on her eardrums. He was educated on Cindy’s disease CREST syndrome, and we all agreed the purple streaks were probably due to Hyperpigmentation from taking mino for 7 years. Cindy also has black above her upper lip, and black pigmentation on both of her lower legs. Dr S has switched her recently to Doxcy, so the pigmentation should improve over time.

The Doc pressed on both of Cindy’s outside jaws near her ears and she screamed! He feels strongly that her constant earaches are caused by TMJ. He explained the the nerve for the ear routes directly over the jaw joint and she must have inflamation in both jaw joints. So she will take inflamatory medicine to solve the problem.

We do plan to discuss with Dr S about adding another AP.

Thanks again Jill!

[cavalier]

Hey Bob – glad you got somewhere with the ENT there is a direct connection between the ear drums & the jaw why I casually mentioned it as I do have some jaw pain from clenching at nite I am trying to remember to wear my night guard – and my ears act up so i figure yes.

Happy Thanksgiving & I hope you can get the AP combo worked out.
Jill Lyme

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