Opinions on FMT donor testing

[DebE13]

I discontinued the robinul/immodium trial. This is about the tenth drug since July that my GI has offered as a solution to my WD. I am just plain burnt out and starting to feel some mental effects which I contribute to the array of drugs in and out of my body that seem to be making everything worse. I do not feel myself at all and feel like I am going nuts. My poor husband..... I need to offer a tribute to his constant attention and support.

We touched on FMTs in previous threads related to my case of MC and I think it is something I'd like to try. I do have concerns about possibly making my condition worse. I've done things before in the past thinking I was doing myself good only to find out later I was impeding my health unintentionally. I pretty much had a major melt down this weekend and my husband told me to order whatever testing needed to be done in order for him to be my safe donor. I actually considered just doing it without but I know that would be incredibly irresponsible.

Gabes, I did run across your comments to another member about the effectiveness of FMTs not being long lasting for MCers due to leaky gut. That makes sense too....... Am I grasping at dangerous straws? Reading success stories of UCers having great results is inspiring but I also know there is a lack of info out there of those who may not have had wonderful experiences. I don't think I'll get around that because there just isn't enough documentation out there.

My husband has no health issues aside from high cholesterol. He has a very limited history of antibiotics which has been years and years ago for the very rare ear infection. He would be considered overweight due to sporting a beer belly (BMI at 29.1). Aside from the belly, he and I have a very similar body type and I've decided if I would put on some extra pounds, I could live with that (praying that results would be favorable).

I've read everything I could get my hands on and was looking for input on the testing. Would the blood serum testing for HIV/Hep A,B,C/STDs really be necessary? We've been together for over 15 years and would think if he did have anything listed, I would already have been exposed to it.

I do believe the stool testing for C-dif and enteric pathogens would be necessary to rule out that he is a carrier of anything that could be passed on to me. I would think if he had C-dif, he'd know it but the others? Which enteric pathogens do you choose to get tested. Is the parasite testing a separate test? I though using the UBiome testing would be a good choice but at $500 I want to be sure I'm not missing anything. The report I received from them about me seemed informative. If my husband did the same and came back with a clean report, would I be good to give it a try? It is a scary thought to think I could potentially cause my condition to worsen. He NEVER gets sick and must have an immune system of steel. I know mine is the opposite. The UBiome report listed all of my beneficial gut bacteria as low. Testing I had done years ago indicated similar results- beneficial gut bacteria as almost non-existent. It seems logical that an FMT would be worth a try. (?)

[tex]

I still think it could possibly help in your case, primarily because of your low bacteria count. This is not like taking a probiotic. His gut bacteria are capable of actually attaching and establishing colonies in your gut. I agree that if he had any major communicable disease you would have caught it by now.

Even if it doesn't work as intended, it may protect you in the future from developing one of the neurodegenerative diseases (Alzheimer's, Parkinson's, ALS) that are associated with unresolved digestive system diseases. Remember though — this is just my opinion.

Tex

[DebE13]

As always, your thoughts are always appreciated. I completely understand I'm on my own with this one. I value everyone's experience and perspective (medical or personal) knowing it may or may not prove beneficial in my particular case but I am really at a dead end. I'm dreading the call-back from my GI because I don't even want to think of what will be thrown at me next. I know they aren't intentionally trying to make me feel worse but I am tempted to just ask for a reprieve from treatment due to the holidays. I'd hate to get kicked out of their practice like I did years ago when I expressed my skepticism of treatment.

I wasn't aware of the neurodegenerative disease risk.... that's good to know.

It would be nice to have a light at the end of the tunnel. I just dropped my husband off at the airport yesterday and he is spending the next ten days in Florida with family to enjoy the holidays. It is difficult knowing I should be with him enjoying a much needed vacation but declined to travel because I knew I would put a damper on just about everything. I felt a bit selfish not wanting him to travel thinking about what bugs he could pick up along the way.

My fatigue has worsened considerably and for the past few months, I am asleep on the couch by seven. It's depressing to feel that I work, come home and make dinner/get ready for the next day, sleep, and start the whole process over again. I am thankful I am able to work but this is not living. I still wonder about optimal thyroid medication but I've switched to Armour and am at the highest dose my doc will allow. I think it's a safer bet, at this point, to focus on the unresolved WD.

[DebE13]

Just got a call from my GI. He wants me to continue with the robinul and try two immodium with it. IT DOESN"T WORK AND MAKES ME FEEL AWFUL!!! Sigh.

I imagine they are as frustrated as I am.

They also scheduled and MRI with IV contrast (dye orally and via IV) for next Monday. Part of me is really not wanting to go through with this. I had and MRI in 2007 when I was initially dx with MC. My husband wants me to get it done but I'm am so tired of procedures that seem to be a waste of time and money. Is it better to just get an updated MRI to confirm nothing has changed?

Isn't that the whole theme of MC? Everything looks normal until you use a microscope? The MRI won't show.......
I just had an upper endoscopy and colonoscopy. Isn't that a pretty good peek at things too?

[Deb]

Deb, I think UBiome is still offering their free (if your insurance doesn't cover it) study. My niece was just looking at it. I know that at least the C-Diff is on it. Sorry for all you're going through. Deb

[tex]

Isn't that the whole theme of MC? Everything looks normal until you use a microscope? The MRI won't show.......
I just had an upper endoscopy and colonoscopy. Isn't that a pretty good peek at things too?

Of course they think they will find something in addition to the MC. Because none of their treatments for MC will work, they naturally assume that something else must be the problem. That's typical of frustrated gastroenterologists who think they know how to treat MC. They're desperate to find a reason why their treatments never work. It's certainly possible that they might find something, but so far I don't recall any cases where something else was found.

In reference to Deb's post, have you been tested, and retested, and retested again for C. diff? It can be hard to find, even in repeated culture tests.

Tex

[DebE13]

Deb, that's how I got my UBiome testing done. I tried to do the same with my husbands information and the site rejected the same insurance information I provided. There was no way around it. I emailed them inquiring about financial hardship (as they advertise to contact them if that situation exists) and I received no reply. I sent another email and haven't heard anything yet. It could be that my insurance won't cover the costs and they somehow block that particular company from future entries. It appears I would need to pay full price.

Tex, I cannot decide what to do. I looked back at my son's records since he is required to have an annual MRI for his liver. It runs around $6K. I was unable to get through to my insurance to get the details of what my out of pocket expenses would be. I am assuming they can give me a ballpark since they have record of what I've paid for deductibles/co-insurance. Even then, I'm not gung-ho to subject myself to needless procedures even if the cost is low on my end. Of course, I do not want to offend by questioning why this is necessary. I am thinking of just telling them the procedure is too expensive and not affordable for me at this time. Remember, the upper endoscopy I just had in October was around $700 out of pocket with another $200 for the breath test for SIBO. I would think they could respect that response since it is non-confrontational. (?)

Tex, I've been tested for C-diff on multiple occasions over the years and most recently in September with the UBiome testing. I am assuming they are reputable. All of the pathogens tested were negative.

[tex]

The scan will detect cancer, cysts, blockages, any deformaties in your GI tract, etc., but the colonoscopies would have caught anything in your colon, and the upper endoscopy would have caught anything past the stomach into the upper duodenum, so this would only be useful for the small intestine or anything outside the GI tract. I agree, it appears to have a limited chance of finding anything. Of course some doctors assume that we have deep pockets, but after a while medical tests can become a mighty deep money pit.

MRI's, especially if they use some older machines, are really irritating tests if you ask me. I went through a couple of scans when I had the stroke last spring, and I'm not sure if the stroke was much worse than that scan. I spent close to 30 minutes inside that machine while it clanged and banged and generally sounded as if it might fly apart any minute. As I recall, I've had at least 3 MRI's of my head, and they've all been mighty unpleasant tests. The worst part is the contrast (dye). I can't help but wonder if they would even notice if I were having a fatal reaction inside the guts of that noisy machine.

If you've been tested at least 3 times for C. diff that should have been enough to catch it.

Tex

[DebE13]

I recall the same experiences. There was nothing pleasant about it. I had the extreme luck of having someone who could not get my IV in. After way too many attempts they asked if I wanted to skip the dye part even though it would be a less accurate test. If I recall I asked why I would want to pay for such imaging and go through this experience only to have a sub par test because they were unable to do their job. They pulled someone out of the ER to put in my IV. She got it on the first try.

Hard news now..... I just spoke with my insurance company and she said imaging is covered at 100% and there will be no out of pocket cost for me. Unusual for most plans. I am switching insurance policies in January since my husband will be retiring soon and I know that coverage will not be there. I don't feel it will reveal anything new. If I had pain it might be another story but then again I could confirm that nothing new has developed since 2007 when I had the last one done.

[brandy]

https://www.kidney.org/atoz/content/Con ... nd-Kidneys

Deb, some of the contrast dyes are hazardous to the kidneys. I think the one that is most hazardous is called gadolinium.

It looks like less of a risk if your eGFR and creatinine are good on your yearly bloodwork i.e. if your kidneys are in good shape.

If your kidney's are in good shape the dies particularly the gadolinium can make the kidney's less good and if your kidneys are in bad shape then it can make the kidneys worse.

[brandy]

https://robbwolf.com/2017/01/13/what-ha ... ransplant/

Just a story but he had low Ubiome counts before fecal transplant.

[brandy]

https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0076449/

[DebE13]

Thanks Brandy.... all good links. I've been trying to read everything I can find just to make a more educated decision. I do have a horseshoe kidney that was found in 2007 with my first CT scan. No symptoms and no further follow up. As far as I know I don't have comprised kidney function (but I really don't know). I feel like a ping pong ball. I keep going back and forth- yes, no, no maybe. Everything is already approved and there will be no cost to me out of pocket so it is rather enticing. My husband is encouraging me to just have it done and then continue with the FMT plans when he returns from vacation. All he said is it is my choice but what if......

Tex, I was wrong in saying MRI- it's a CT scan with oral and IV contrast of the abdomen and pelvis. I've had an MRI before- one of my brain for reasons I no longer remember possibly back in my headache days. It was quite a racket.

Brandy one of the links about the dye also listed diarrhea as a common side effect from the contrast. Just what I need. I wish I had the type of relationship with my GI in which I could just honestly say without worry of being kicked out of his practice that I simply need a break from treatment. Six months of aggravation on my body with no glimmer of hope does not want me to jump into the CT scanner and add a little more insult to injury.

I will not get another opportunity (if that's a good word for it) to have it done without costs involved but at the same time I don't like the idea of the dyes or radiation. We're still monitoring that suspicious lymph node in my neck. Although I do find it comical that I once again declined x-rays at my dental cleaning this week and just had x-rays done at my chiropractor's office the following day and now this.......


Oh yeah, I forgot I have scoliosis. It hasn't improved any. I've developed such an ache in my shoulder and tenseness in my neck that I can no longer sleep worth a darn. I've got the zombie dark lines under my eyes. I haven't had an adjustment since 2011 and oh boy, did that feel good. Now that is worth spending money on. I still blame my thyroid condition for the shoulder/neck issues but hopefully the adjustments will offer some relief. I ordered a bottle of melatonin and it arrived today. Most likely more money the flush down the toilet but I thought it would be worth a try. I thought is was just sleep related and was unaware of its involvement with the GI system.

Good news on the UBiome billing. For whatever reason, the site will not accept our insurance information but I did find a promo code that reduces the price from $399 to $89. That I can afford. It will cover testing for the following pathogens:

Bacteroides fragilis
Fusobacterium
Campylobacter
Ruminococcus
Clostridium
Salmonella enterica
Clostridium difficile
Veillonella
Desulfovibrio piger
Vibrio cholerae
Escherichia-Shigella

In addition it will give us a snapshot of what his good gut bacteria look like.

I'm wondering if this will suffice or if I should look for another test that screens for parasites. Although, wouldn't it be likely that I would share the same ones when you are comparing intimate partners sharing the same living space? Can one be a carrier of a parasite without knowing it?

[brandy]

Hi Deb,

Chronic digestive issues (over years) is not good for the bones either.

Your husband will be getting some great weather by the way. It is not too hot and not too cold.

Brandy

[DebE13]

Both my mom and son have osteopenia and both have GI issues. It was refreshing to talk with my chiropractor again. Treating the body as a whole is a soothing concept. They also practice functional medicine and I can't wait until the day when it is accepted by insurance companies. I often though about contacting my insurance provider and have them review the long list of drugs and procedures...... they will cover those expenses yet not a visit to FM doc. I can't grasp the logic behind that. Although knowing that they do not freely dispense drugs to mask problems explains it all. Not that FM doesn't have its faults, it's been nearly six years since I gave that a try. The blood test for food sensitivities wasn't totally accurate (didn't know about Enterolab at the time) and the copious amounts of supplements didn't help my case either. I'm sure their studies have evolved and improved. My GI doesn't seem to place much weight on the fact that I also have thyroid issues, Lymes, and that I destroyed my guts with NSAIDS and other medications. Same old story.......

The weather sounds gorgeous. I could handle 73 degrees right now. Although I was getting complaints that it was muggy- of course I had no sympathy for that being at home in 18 degree weather and at work. I love the sunshine but I don't think I would do well with the humidity.