Frustrated in Rhode Island

[solaceh20]

Hello all:

I have been an avid reader of the site since I was first diagnosed with the "lovely" (note sarcasm) c diff bacteria this past March. I was finally able to get an e-mail address compatible with the site to post. So here I am at 26 years old and was relatively healthy until hit with this 6 months ago. Being in the medical research field and with the intent of going to naturopathic medical school down the road, I did everything I could to learn about the condition and advocate for myself. I've struggled now through my 6th course of vanocomycin with relapse after relapse. I'm hoping that I can find a way to try the fecal infusion but so far no one in RI is willing to do this for me. Like others on the site, I am sick of being sick and want my life back. I've had to put school on hold and have suffered financially, physically, and emotionally from this awful disease. I know that I have not had it as long as some others but no matter how long you're affected by c diff it's far too long no matter what!

Anyway, I just needed to get that off my chest. Also, hoping someone in the RI area with successful treatment may read this and have some advice for me. I've already seen Dr. Lamont in Boston but he's suggesting just more vanco. He also said that the hopes of a c diff vaccine are slim because companies just don't see a profit in it!!?!! So at this point, I am on my own trying to figure this all out.

Thanks for reading.

[Nancy1]

Welcome to the group that no one wants to join. It sounds like you've done a lot of reading here already, but in case you haven't, be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas of FAQ that interest you.

Have you tried tapering or pulsing off of vanco? Pulsing is what finally worked for me. Fecal infusions are done by a doc in Minnesota, if you are able to travel there; see the Doctor section for more info. Dr. Kelly in Boston is very knowledgeable about cdiff. Good luck. Let us know how it goes.

[Bobbie]

There are now other options. See "the broth" under Doctors - Dr. Mark Allen in KC.

[solaceh20]

Thanks Bobbie and Nancy for the information. Yes due to my frustration with the illness I have read the website inside and out. I am familiar with the broth method and Dr Aas' reseach in Duluth. I've read Dr. Kelly's research as well. He works under Dr. Lamont and I was not able to get in with him so that was my second choice. However, Dr. Kelly has consulted with my local physician.

I have tried tapering the vanco before and am on a longer one now with pulsing at the end along with Florastor. I am hoping that this will bring some relief as after this I do not know how much more vanco my body can handle. My local physician has agreed to attempt the fecal infusion via enema in the event this taper does not work. Trying to keep the faith...

[solaceh20]

It's been over a year since I was diagnosed with c.diff in 2008. I had the fecal transplant in October and since then with the help of VSL#3 probiotics & immune boosting, I am doing well!!

I want to say thank you to everyone on this site b/c if this site did not exist then I would likely still be suffering.

I am still trying to regain my strength after the battle and antibiotics did a number on my system. Overall, I am grateful and trying to get myself to optimum health.

The bought with c diff put me off track for my schooling a bit but I am almost ready to apply to medical school and hope to educate others about this nasty illness.

YOU WILL GET THROUGH THIS!! If anyone has any questions about what I did or would like referrals to docs in the New England area, let me know.

Namaste.

[beth22]

I would be interested in the contact information.

Beth

[Bobbie]

solaceh20,
Congrats. on finally beating "the beast." Glad you are feeling better; it might take awhile before you are 100% -- it did for many of us.

Please do help educate others in the medical field. There are still so many "experts" who consider C. diff. a "minor infection in the elderly and/or already ill." Once again, the "experts" are not always right.

Glad the site was helpful. Please check in now and then to encourage others and let us know how you are doing.