Liz's Case History

Guest · Postby **Guest** » Wed Jan 29, 2003 4:30 pm

I have not yet posted my history despite being on this list and exchanging messages for over 2 years because I am not the typical Cdiff patient, but do have a history of Cdiff, complicated by other pathogens, some known, some not known. As with many of you, I have not been able to return to a "normal" gut function since I was first diagnosed and treated for cdiff and the various other pathogens. But even tho' my history isn't straight Cdiff, I think it's important to share what I've done and learned about all this, as some others of you may have a similar history. And in any case, for those of you who have read the theories and clinical experience of Dr. Borody, he believes that the gut can be totally compromised by not only a Cdiff infection, but by additional ones that may precede, accompany or follow Cdiff. In any case, I had a perfectly healthy gut 9 years ago at age 41. Then I suddenly developed extreme and new sinus pain after my husband and I moved into a new (old) house. I didn't know at the time what was causing the problem and so saw an allergist who of course prescribed antibiotics evn tho' he could see nothing on Xray or in any lab culture that showed infection. I continued to have terrible pain and drainage so kept going back to him month after month and he'd just change the antibiotic. I took at least 10 different ones over the course of a year and by that time knew that something was wrong with his protocol and I also began having G.I. symptoms of diarrhea, cramps, foggy brain, insominia and others. I started looking for other answers and found that there could be a problem in my house, which indeed there turned out to be; we had an air quality expert come in and he found major water damage in the basement and very high counts of mold and yeast in the foundation walls. The spores from that area would float up thru the whole house he said, as they're airborn and i was probably having an allergic reaction which was not an infection at all. But by that time, my gut was toast. I saw a chemical-sensitivity Doctor after learning that my symptoms mirrored that illness. He did a number of tests and found I had several gut pathogens, including Cdiff. Over the next 2 years I was treated for all of them at one time or another; I'd get a specific treatment for one, then retest and get a negative, then do another stool test cuz I kept having all the G.I symptoms and another bug would show up, including H. pylori, Entamoeba histolitica, Pseudomonas, Klebsiella, Yersinia, and several others. But I was never able again to produce a positive Cdiff test. I only could produce antigens to it on saliva testing. The long and short of it is I spent the next 7 years desparately looking for answers. Looked in every possible medical direction; did every test for every gut thing you can imagine, saw numerous docs and "medical healers" both traditional and alternative and did so many "treatment" modalities I don't even like to remember them all. Nothing worked at all. My symptoms slowly got worse and worse over time til this past year I really did not know how I was going to continue. It felt like slow death as I'm sure many of you can relate to. I was lucky in that I never had the extreme, pseudomembranous colitis with bleeding, etc. This was due, I believe, to a total lucky shot in my journey which led me to believe that I had somehow, from these "past" infections, become "allergic" to all carbohydrates. I found a chat site devoted to similar people and started to follow their diet restrictions, which were very strict and had to be absolute or it didn't help. As I later found out from Sharyn Leis at Dr. Borody's, severely reducing, in fact eliminating my carbohydrate intake helped to delay for a long time the growth of the cdiff and whatever other pathogens I have because they are all primarily carbo eaters and that's what helps them get strong and produce so much toxin. They'll learn to adapt however, and will eat protein if they have to. I could somewhat control the diarrhea and sort of control the other symptoms as long as I stayed away from everything that had the slightest sugar or starch in it and that is a lot of different foods. It basically leaves protein and green leafy vegies and a few other vegies like tomatoes, avacado, green beans, etc. No fruits or sugars of any kind either. I know that even Dr. B says that diet doesn't matter with cdiff and maybe it doesnt't. Since I don't know for sure what combo of bugs I have, I can't suggest that following that diet while ill could help anyone on this list. I just know it helped reduce symptoms for a time for me. But the minute I tried to go back to eating carbos like bread, milk, potatoes, pasta, etc. I would develop urgency and explosive diarrhe with mucuous and was terribly sick. Even on the diet I had loosem foul-smelling stool and gut pain and foggy brain and awful fatigue and achy limbs. And a weird other symptom that was this almost constant pounding heart and rapid pulse, espcially if I accidentally ate anything carbo'd. It kept me up at night or woke me from sleep all the time so I was always sleep-deprived too. Then I finally found this site and the info on Dr. Allen's tx and Dr. Borody. I immidiately decided I wanted to do Dr. B's tx but it just didn't seem possible at the time. Plus my husband was very leary given the methodology. So, I decided to try the less-invasive (in some ways) tx at Dr. Allen's in Kansas City. I was doubtful that a one-time treatment, endoscopic only, and containing only 2 out of literally hundreds of good bacteria in the gut was going to do the trick but I felt I had to try. My husband was comfortable with it cuz it was in the U.S., by a well-known G.I. at a reputable medical center and hospital. So I did that last January (2002). It didn't work, but I did feel great for a few days afterward. As Sharyn also explained, that was probably due to getting the cdiff spores out of my body for a short time as a result of the purge before the tx. But of course they came back cuz they were still there, tho in reduced numbers. Still, from that process I learned a lot about the process of replacing good gut bacteria and I can say without reservation that Dr. Allen and all his nursing staff are the most caring, competent and patient-centered health care providers I've ever encountered. It was truly a remarkable experience in today's healthcare world. So I was determined to then do Dr. B's tx. I could not go to Australia because all the chemical sensitivities that developed from the mold problem do not go away even when you get rid of the mold, or other cause. Something gets permanently "switched off" in the brain and you can't handle "normal" toxic air the way a healthy person can. So I decided to do the home tx, regardless of the doubts of so many people, including my husband. I was so sick I could not give up. I started the search for a donor last Spring and had major difficutly findig a viable one. Every male family member or friend that I had identified either had previous history that ruled them out or were "healthy carriers", a phenomenon where a totally healthy, asymptomatic person carries a really bad, live pathogen in their gut but has no reaction to it. One of my brothers actually tested positive for Cdiff (as well as E. histolitica) and he's as healthy as a horse. Whether this was bad lab work or a false positive, I don't know. Finally, when I was truly desparate having been thru numerous donors and no one else on the horizon, I was so blessed to find a donor who had already done this for someone else and was willing to act as my donor too. I cannot believe such generosity of spirit and person. It has literally saved my life (I think). I am now in my 4th day of tx and am feeling so much better it's hard to believe I was so ill less than a week ago. I'm not yet sure this will "hold", but it's headed in the right direction I think. Sharyn has also checked in with me and has said it looks good given my gut's reactions. I still have 6 days to go and will probably have many weeks before things really settle down, but I'm able to eat anything I want now and not have all the symptoms come back. I do have a bit of rapid pulse shortly after eating heavy carbos like bread, but it soon passes. I'm hoping it will go away entirely soon. So, I think I'm on the mend but will keep you updated on my progress. I cannot say enough about the good work of this site and all who have helped me thru each stage of this journey. There are very special people on this site who do much work and giving to others who, like themselves, are or have been so terribly ill. I thank every one of you and have special thanks to a few who know who you are. I hope more of you who are still ill will consider the Borody tx as it seems to be really working for me and has done so for many others who have posted to this site. I'll keep in touch as this progresses. Keeping fingers crossed..... [Guest Posted by: 'Liz2']

Guest · Postby **Guest** » Fri Feb 07, 2003 1:36 am

I am now done with Dr. B's infusion tx after doing 10 days in a row. I am feeling really well, with no gut symptoms besides the expected bloating and gas as my new "good bugs" try to establish and attach in my gut wall, as Sharyn has said. I can eat just about anything, but in smaller-than-normal quantities. But I think that's cuz I was eating so little by the time I started the tx since everything made me sick. I also have to watch the amount of complex carbos I eat in one sitting or else it feels like I've eaten 3 complete turkey dinners! But all in all, things are going very well and the bloating and gas get less each day. It'll be a few weeks before I'll really feel I'm "safe" and back to normal and I'll get retested about 6 weeks from now. I'll stay in touch. [Guest Posted by: 'Liz2']

Guest · Postby **Guest** » Sun Feb 09, 2003 4:08 pm

It has now been 4 days since my last infusion and I am still doing well, with much less gas and bloating. Only issue is a persistent itching of my skin and scalp that is new since the infusions which may have nothing to do with my new carbo diet or the infusions. Could just be dry, winter-air reaction. I'll be watching this and if necessary, do a trial of switching to non-wheat carbos for example, to see if I've got some kind of persistent allergy to wheat, which many people have. Other than that, I'm really enjoying my return to a regular diet. I drink lots and lots of water every day as the added fiber in my diet which I haven't had for a long time, requires lots of liquids to avoid constipation. [Guest Posted by: 'Liz2']

Guest · Postby **Guest** » Mon Mar 10, 2003 4:26 pm

It's been a month since I posted a hx update and a month and a half since my last infusion. By Feb 25 I was having major symptoms again; gut pain, chronic diarrhea, rapid pulse/heartbeat after eating, dry mouth, bloating and that "hung over" head feeling despite not drinking alcohol. I was very scared and discouraged. Started taking 5-6 Culturelle each day in addition to the home-made yogurt I eat every day. Also stopped eating whole-grain based foods and complex carbos and went to well-soaked dried beans and lentils in soups and salads. After about 4 days things started to improve. But the chronic D and gut pain lasted almost 2 weeks. This is apparently standard in the post-infusion early period as the good and bad bugs go thru their respective life cycles and duke it out in the gut. But now I'm much better; have ok-formed stools, no gut pain and little "hangover" feeling. Still have lots of bloating and gas which is prob'ly as much to do with Culturelle as it is the gut process. I still cannot tolerate "normal amounts" of certain foods like a full meal of noodles and rice or a full plate of pasta and bread. But I'm eating whole-grains again and feeling ok. I think that it just takes a long time, as Sharyn has repeatedly said, for the good bugs to finally and completely take over the gut walls again and in the meantime, we have to expect good and bad days. I did my infusions in late January and she tells me by late June my gut's adjustment should be pretty well complete. In the meantime, I'll continue to have ups and downs. I'm still very hopeful and expect a full recovery. Will post again in a couple weeks.

Guest · Postby **Guest** » Thu Oct 02, 2003 1:49 pm

It has been 6 mos. since I posted an update although I tried to post one in August and for some reason the message just didn't get on the board. I've hesitated to update as my symptoms have returned full bore and I wasn't sure what my next steps would be. But now after a lot of consulation with many people, both medical and like-minded patients, I am pretty sure I'm going to go to Australia to have the full clinical protocol at Dr. Borody's clinic. This is the best way, I think, given my multiple-infection history, including C.diff. and the known difficulty of getting definitive dx here in the U.S. There are many reasons why my home tx with Borody's method seems to have failed, not the least of which is the complication of having more than just C.diff to start with. Also, it would appear that the majority of my C.diff (and possibly other bugs) have lodged in my upper colon, the small colon, and I just could not get enough flora up that high to overwhelm the critters. So, given that Dr.B's clinic gives both the enema and endoscopic forms of flora delivery over multiple days, which we can't get anywhere here in the U.S., it seems my best option, even though it's going to be expensive, would be to go to Sydney. I feel very fortunate that I am able to do this cuz otherwise, I just don't know what I'd do. Also, just for your info, at Dr. Borody's suggestion, I got a Rx for Asacol, which Dr. B uses as an antibacterial for his C.diff patients who can't, for some reason, (insurance or budget or otherwise) do the clinical tx for a time. It has made a big difference in how I feel generally; almost no nausea, very little "head fog" feeling, able to eat a few more food varieties, a bit more energy. It is also an anti-inflamatory as those of you with IBD know and that has helped a lot too. But it does itself cause some D, though I only have to go about once a day (wow!), gives a little dry-mouth and sort of dizzy-sleepy feeling the first several days. Also still have bloating and gas and still feel "overfull" after eating even small meals, but just don't feel so awful all the time. I think this'll help get me thru the getting organized for Sydney. Sharyn has told me of other U.S. patients that ended up coming there and who have done well. So that's encouraging too, since this is a real "last resort" for me. I'll keep you all updated on this but, if I go, I don't plan to leave til the 1st of the year since I have to be there for up to 8 weeks to get every pre-test redone as well as all possible follow-up tx while there.

Liz's Case History

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