Post Lyme Dysbiosis

[footguy24]

I was diagnosed with Lyme disease in 2010 and treated by a lyme literate physician for nearly two years. I had been ill for many years before figuring out the reason. I did reasonably well and was able to continue my medical practice for several years before retiring in 2013. I diagnosed one of my 6 daughters with Lyme disease and associated co-infections nearly 4 years ago. I treated her with a combination of I.V. and oral medications for several years. She initially did well but has since gotten to the point where she cant work and had to drop out of nursing school. I was involved for 6 months with a "Lyme Mentoring" program by zoom in which I participated on a weekly basis for 6 months. The Lyme expert teaching the program spent an entire session talking about FMT. At the time I thought it was interesting but had no idea how to proceed. Recently I searched the internet in pursuit of additional info about FMT and have read everything I can find about the science behind the procedure. My daughter is only in her early forties and suffers from high cortisol levels, hypertension, pre diabetes, sleep apnea, restless leg syndrome, uncontrollable weight gain and abdominal distress. several G.I. scope procedures have revealed nothing abnormal. I have been considering putting her back on an aggressive antibiotic protocol but dont feel that is really the right course of action. I am convinced that the only viable option for her if FMT.
I had been considering using a family member as a donor but dont want to pass on any genetic predisposition to the same thing my daughter is dealing with.
I would greatly appreciate any recommendations for moving to the next stage of possible treatment.

Sincerely,
B.T.

 

[SFBayFMT5]

I have been considering putting her back on an aggressive antibiotic protocol but dont feel that is really the right course of action. I am convinced that the only viable option for her if FMT.

I 100% agree that FMT is a FAR more promising option than more of an aggressive antibiotic protocol. I was on antibiotics for Lyme for almost six years, four of them straight (continuous) under the care of a LLMD (the first two years where I was on and off were a combination of an infectious disease specialist and a pediatrician). All of the improvement was within the first year of care by the LLMD, the rest didn't help anything.

Then, years later, I was back on antibiotics for suspected Bartonella. This helped somewhat again as they were completely different antibiotics, however it was the FMT for C. diff that I acquired when going off this final course that was almost magic in what it did, far exceeding anything that those antibiotics did.

It is very difficult to tell the effect of Lyme and coinfections themselves from the effect of a damaged microbiome--and obviously antibiotics contribute to, not cure, the latter. Even if the same issues are present that originally emerged with Lyme, it's quite possible that now they're being driven by a damaged microbiome. That's something I learned way too late.

I had been considering using a family member as a donor but dont want to pass on any genetic predisposition to the same thing my daughter is dealing with.

Well, any Lyme and coinfections she had would obviously not be from her family. But it's quite possible that genetics and starting gut microbiome had something to do with the hypertension, diabetes, etc., even if the Lyme was the final stress that precipitated them.

Obviously, it's easier to use family members, especially if they live nearby, as you already know them and they are more likely to be willing. On the other hand, be open to the possibility that the best donors might be unrelated, and so don't give up just because related donors don't help.

 

[Michael Harrop]

My daughter is only in her early forties and suffers from high cortisol levels, hypertension, pre diabetes, sleep apnea, restless leg syndrome, uncontrollable weight gain and abdominal distress

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The evidence in the wiki strongly suggests that these conditions all stem from gut dysbiosis, and thus FMT is the solution.

I would greatly appreciate any recommendations for moving to the next stage of possible treatment.

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You'll have to read this and get involved: https://forum.humanmicrobiome.info/threads/the-fda-and-fmt-regulation-part-2-jul-2024-humanmicrobes-org-i-met-wit.520/post-1370. We need more doctors getting involved, taking action, and recruiting others.

Antibiotics are not a solution https://humanmicrobiome.info/antibiotics.

 

[footguy24]

I 100% agree that FMT is a FAR more promising option than more of an aggressive antibiotic protocol. I was on antibiotics for Lyme for almost six years

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Thank you for responding to my post and
For the helpful information. The real issue for me at the present is not so much continuing to accumulate info about FMT as it is to move forward to the logical next step for my daughter and possibly for my wife who has been suffering from MS for the last forty years.

 

[SFBayFMT5]

Thank you for responding to my post and
For the helpful information. The real issue for me at the present is not so much continuing to accumulate info about FMT as it is to move forward to the logical next step for my daughter and possibly for my wife who has been suffering from MS for the last forty years.

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That's exactly what I was trying to advise about. Given my experience, and the experience of nearly everyone I've heard about going through it, the answer is almost certainly NOT more aggressive Lyme treatment. I noted that even you yourself said "I did reasonably well", not "I was cured of everything, it was a miracle".

 

[footguy24]

I say reasonably well because I am left with long-term myalgic encephalomyelitis, as well as mitochondrial damage.

 

[SFBayFMT5]

I say reasonably well because I am left with long-term myalgic encephalomyelitis, as well as mitochondrial damage.

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That's precisely what I'm saying--you don't know how much of the fact that you have residual symptoms has to do with the effect that Lyme treatment had on your gut, vs. the effect of the Lyme itself. In my experience, going down the road of "it's all still Lyme" is a recipe for getting progressively more messed up over time.

Your own situation is your own business, and you obviously feel like you were better off after Lyme treatment than before. That's OK. However, I strongly urge you to NOT "inflict" more of this treatment on other people who definitely are NOT well after years of Lyme treatment, hoping they will get better, especially without making sure that their guts aren't the main issue at this point. The fact that one of them has enough GI distress to have undergone multiple endoscopies is a major red flag! The fact that the scopes reveal nothing means that the GI tract is structurally fine, but that doesn't show dysbiosis, which I wouldn't be at all surprised if your daughter has.

 

[footguy24]

I agree with everything you have said. I am 75 years old and no longer in practice thus i do not treat Lyme disease.
Unfortunately, it appears that I will need to search out other potential FMT providers as well.

 

[SFBayFMT5]

I feel the need to make another post clarifying what I said above.

I do NOT oppose in any way the timely treatment of Lyme disease (with antibiotics) for a standard amount of time, possibly slightly longer (up to maybe 6 months in cases that were caught late), provided the patient actually tests positive for the disease rather than just being diagnosed clinically based on nonspecific symptoms (i.e. NOT a bull's-eye rash or arthritis, but things like fatigue, brain fog, flulike symptoms, etc. on their own). Even prophylactically after a tick bite, like my mother was bitten about a week ago by a tick that had burrowed deep inside, and she's currently on a 10-day doxycycline course to make sure she doesn't get infected. Even with that she already has GI upset and can hardly eat anything, but it's worth it to her to endure ten days of that to avoid possibly years of issues down the line. This is all prudent. Also prudent is checking your pants legs after walking through tall grass in the spring and summer. We don't want to go back to missing Lyme cases (like happened to me at first as well).

What I'm talking about is treatment by LLMDs that in the vast majority of cases goes on long after there stop being improvements. 2-3 years is only half of what I went through, but still well past the point where I stopped improving. And they do this at times with patients who have never even had a positive Lyme test. Then when they develop a litany of new issues that they didn't have before the treatment, and end up seeing other doctors who now are at a loss figuring out what went wrong, there is often no accountability whatsoever on the part of the LLMDs. Near the end of my treatment I had some symptoms that could indicate yeast overgrowth, yet when I asked my LLMD for treatment, he prescribed one single pill of Diflucan. Getting something like FMT to truly fix the gut is something the patients are totally stuck with doing on their own.

 

[Michael Harrop]

Unfortunately, it appears that I will need to search out other potential FMT providers as well.

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There are no other safe and effective sources of FMT. Which is the whole reason I started Human Microbes: for my own health. It appears that you'd rather give your daughter FMT from the easiest-to-obtain, low-quality, risky source, rather than put any effort into making safe & effective sources available.

Thus, it is clear that you should not be trying to treat your daughter yourself, because you're going to harm her even more. Your judgment and ability to process information are poor.

 

[footguy24]

See personal email.
Enough said.