SD causing Gastroparesis

[hawk6868]

My Wife Cindy, was diagnosed with CREST in 1991 at age 40. She suffered quite a bit, 51% lung capacity, liver, and kidneys were failing. We discovered AP treatment from my brother, and my PT person working at the local hospital. She started on AP with Dr. S in 2004. She began to improve after about 6 months. In the next few years her liver and kidneys tested normal, and her lung capacity tested above normal! She was taking generic Minocycline 100mg x 2 a day, every day, all that time, with an occasional Clindamycin iv boost once a year.

Suddenly she had a sharp pain on her side, and then fluid in the lungs in 2009. Later she had spots on the lungs. Doctor drew out the fluid from her lungs, the results were negative. 1 year later she had another iv treatment. Later test showed the fluid was gone, the side pain was weaker, and the spots were smaller. Today the side pain, and spots are gone. I wonder if the Minocycline and iv’s killed the mycoplasma in her lungs, left some fluid, spots, and later the toxins just went away?

In the last 6 months she started having reflux several hours after eating a meal. We found out recently she has gastroparesis, probably caused by her SD. We didn’t expect her problems to stay away forever, but we are very disappointed to have another serious crisis so soon after the lung problems. I want to help my wife get back to normal once again. I have a request and a few questions:
1. Does anyone have some menus for Gastroparesis, or good links on the web for Gastroparesis meal planning?

2. Since the iv treatments apparently reversed her lung, liver, and kidney failures, could it also reverse the gastroparesis problem? Has any SD people had the iv treatment reverse gastroparesis?

3. The generic Minocycline doesn’t seem to be as effective as it once was. Would the brand name Minocin make a big difference in her health? She has always tried not eat 2 hours before and 2 hours after taking the Minocycline to improve absorption.

My wife has a great attitude and is working very hard on the gastroparesis menus, but this is a major life style change, and one I would like to not have her go through.

Sorry for such a long post!

Thanks!
We appreciate everything you peolpe do on this site!

[Parisa]

Bob,

Here’s a link to an article I posted a while back which talks about the role different bugs (lyme, mycoplasma, bartonella, etc.) and their effect on the digestive tract:

http://www.lymeinducedautism.com/images/Belle_s_Palsey_of_the_Gut.pdf

As far as brand name versus generic for minocycline, some people find it makes a huge difference. Do you know if your wife’s generic mino brand has changed or if they have reformulated? She should definitely consider going on brand name minocycline.

[Maz]

@hawk6868 wrote:

1. Does anyone have some menus for Gastroparesis, or good links on the web for Gastroparesis meal planning?

2. Since the iv treatments apparently reversed her lung, liver, and kidney failures, could it also reverse the gastroparesis problem? Has any SD people had the iv treatment reverse gastroparesis?

3. The generic Minocycline doesn’t seem to be as effective as it once was. Would the brand name Minocin make a big difference in her health? She has always tried not eat 2 hours before and 2 hours after taking the Minocycline to improve absorption.

Hawk, so nice to meet you and just so sorry to hear Cindy is facing this new issue of gastroparesis. It’s just fantastic that Cindy has done so well on AP, but I think I’m going to second Parisa’s suggestions to research a little further into infectious causes, as it may well be that she has coinfections that are holding her back.

Lyme disease and coinfections are just one possibility here – so many SDers are finding Lyme to be a component in their infectious mix. However, another spirochetal infection has also just been tied to SD. This one, helicobactor pylori, has also been associated with gastroparesis or slow stomach emptying, causing reflux.

http://www.ncbi.nlm.nih.gov/pubmed/9246707

http://www.ncbi.nlm.nih.gov/pubmed/21145276

The above are pretty ground-breaking studies and, interestingly, when some SDers go on combination abx protocols they do much better than on simple monotherapy with just a tetracycline. The treatments that seem to work well for Lyme and H. Pylori are also great for SDers – E.g. Minocycline (a tetracycline), Azithromycin (a macrolide) and Flagyl or Tinidazole (an anti-parasitic. Interestingly, here’s yet another instance of a particular type of gut problem, pneumatosis cystoides intestinalis, that is also treatable with metronidazole (aka Flagyl) and can cause lung problems as well as seen in celiac disease, a common issue for SDers:

http://emedicine.medscape.com/article/371955-overview

http://www.ncbi.nlm.nih.gov/pubmed/21372514

Just some fellow patient suggestions, of course, but have you considered getting Cindy tested for Lyme and coinfections (IGeneX labs in CA)? If there is some suspicion of Lyme, then getting her to a Lyme Literate MD (LLMD) who would be able to adjust her abx protocols to include a full spectrum treatment to cover the corners on spirochetal offenders, like Lyme and H Pylori could go a long way to nipping these new symptoms in the bud. 😉 If you need any info on how to go about testing or to find a LLMD, we can offer resources here.

Also, would look into the possibility of celiac disease and gluten intolerance as a possible cause of “feeding the bugs” and possibily being imlicated here.

Yes, changing to brand Minocin may help, too. Some folk do seem to do better on brand as some generics contain fillers and dyes to which some people are sensitive. The pelleted variety of Minocin, too, seems to be easier on the stomach for SDers in terms of helping to prevent reflux, as the pellets dissolve lower in the gut than the powdered variety, which can worsen this. IN fact, some folk manage to get the US Wyeth/Triax brand covered by insurance by using the reflux card.

Hawk, hope some of this new research above is of some help to you in your searches to help your lovely wife, Cindy. Please send kind regards to her – you’re terrific to be such a staunch advocate for her, too! 🙂

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