My first appointment with KDM

Daffodil

Daffodil

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snowathlete said:
Thanks Daffodil. Since getting UC I've researched it somewhat, and there is a lot of evidence that some people's UC is certainly caused by abx, and the obvious conclusion is that is because of the friendly bacteria dying off.

I did take the probiotics that KDM prescribed at the time. Not terribly strong, but better than nothing. I woudl strongly suggest anyone on abx take probiotics alongside. However, you can only get a couple of genera as probiotics or fermented food. The vast majority you cannot get, so your abx might kill off 300 genera of your gut flora, and all you are able to do is add 4 or 5 back in. You're still losing 295 of them. So just be aware of the symptoms of IBD, especially passing blood, and if necesary stop the abx rather than doing more damage. It's a real risk. But I also think it is important to also keep in mind that not everyone who takes abx for Lyme develops IBD.

I think fecal transplant is far more promising for IBD (and more promising for UC than Crohn's) than it is for ME/CFS. I would potentially do it, but I am not there yet.

I had some mild food intollerances before starting abx. While on abx I developed much more severe food intollerances. I was on a very strict diet until recently, but even now I have to be careful. If I ate the wrong thing then it made my UC and my ME/CFS worse. I guess that is either down to a more leaky gut now or not having important bacteria present, or both.
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hi snow. yes...i meant fecal tx for the UC..not the CFS

most people with CFS had IBS even before they got CFS, i thought. i certainly did.

i guess i am trading one illness for the risk of another, but what can we do?

i have been taking a probiotic called ALIGN for 2 days so far, and have not developed diarrhea yet. I believe it has no D-Lactate producing bacteria and CFS people have too much D-Lactate usually, so maybe this is why. However, I have a feeling ALIGN might not be all that powerful and I spent most of my time on Abx without any probiotic.

I will ask my doc about this and report what he says in Sept. did KDM say anything about your developing UC??

I hope you continue to feel better.
 
Daffodil

Daffodil

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OH geez.no wonder Align doesnt make me sick..it only has 1 billion bacteria! I spoke to a probiotic chemist once who told me weak probiotics like this are totally useless. ugh.

i want to try Custom Probiotics but they are so expensive
 
snowathlete

snowathlete

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Daffodil said:
OH geez.no wonder Align doesnt make me sick..it only has 1 billion bacteria! I spoke to a probiotic chemist once who told me weak probiotics like this are totally useless. ugh.

i want to try Custom Probiotics but they are so expensive
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Yes, Align may work at the doses in their studies but what they don't tell you is that the doses they sell at retail are only a fraction of that. Absolute swines. I take custom probiotics, they are expensive, but they do at least do something. Last a surprising time too. I was lucky as normally I wouldn't have tried them due to the cost but someone kindly gave me half a jar to try that they had finished with.
 
Daffodil

Daffodil

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@snowathlete ..hi snow. i went ahead and ordered a bottle of custom probiotics without D-Lactate. It was expensive but looks like it will last several months.

there is another brand i wanted to try called GutPro. Apparently this has some D-Lactate producing bacteria strain but this bacteria is supposed to actually help lactic acidosis...but no one ships it to Canada. Looks like it might be cheaper and possibly better than Custom Probiotics, but not sure. It is also marketed to people with autism, CFS, etc etc

so what will you do now? did KDM tell you what to do about CFS treatment? did you try herbals for the Lyme/CFS? You may have told me before but no memory here..

xoxo
 
snowathlete

snowathlete

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Daffodil said:
@snowathlete ..hi snow. i went ahead and ordered a bottle of custom probiotics without D-Lactate. It was expensive but looks like it will last several months.

there is another brand i wanted to try called GutPro. Apparently this has some D-Lactate producing bacteria strain but this bacteria is supposed to actually help lactic acidosis...but no one ships it to Canada. Looks like it might be cheaper and possibly better than Custom Probiotics, but not sure. It is also marketed to people with autism, CFS, etc etc

so what will you do now? did KDM tell you what to do about CFS treatment? did you try herbals for the Lyme/CFS? You may have told me before but no memory here..

xoxo
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Hope it works and turns out to be a good investment for you!

I didn't make my last appointment to KDM a little over a year ago. I got up the morning of the appointment really early to catch the train I'd booked, but I just didn't have it in me to make it there. I didn't rebook it because of the energy it would cost and I dont know I'd get much out of it. I am not sure KDM had a plan b for treating me really that didn't involve herbals and I think they would probably be too much for my gut as well, so not sure I wanted to try that. It's also worth bearing in mind that I was on abx for around 10 months and I had no improvement in that time, only a decline, and although my test results showed there was lots of infammation, it wasn't certain that I had Lyme disease, and even Bartonella which was more likely, was not really certain either. If those diagnosis were more certain then I might have tried herbals, but as it is...And I am still very much living day to day, struggling. I've just recently got over my second flare of UC after the initial one ended a year ago. I still have systemic symptoms, including what is almost certainly arthropothy caused by the colitis - I am in the process of getting that diagnosed. And I am currently coming off my sleep med (amitriptyline) as I became resistant and then I'll be trying Trazodone. I am hoping that more sleep will give me a better chance of getting on top of everything. In the back of my mind I want to try LDN (which is also used in UC) and I have got hold of some but not ready to try that yet. Some chance I may try antivirals at some point, but no certainty that I will.
 
Daffodil

Daffodil

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hi @snowathlete . i have heard that herbals dont affect gut flora...which i suppose doesn't make too much sense if it is antimicrobial, but that is what they seem to think on the message boards. what if you were to ask the manufacturers or Dr. Cowden or something about this? Or even KDM?

Have you had the LTT ELISPOT test? I guess you must have if you saw KDM within the last few years.

I understand your not being sure you even have Lyme..I feel the same way myself many times.

I cannot remember how long you have been ill, but 10 months is rarely enough to see improvement. KDM told me it would take 4 years for me! My inflammatory markers also went very high in the middle of treatment..I am told this is common.

Anyway, I hope somehow you are able to try herbals one day.

May I ask which probiotics KDM was recommending while you were on abx?

xoxoxoxoxo
 
snowathlete

snowathlete

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Daffodil said:
hi @snowathlete . i have heard that herbals dont affect gut flora...which i suppose doesn't make too much sense if it is antimicrobial, but that is what they seem to think on the message boards. what if you were to ask the manufacturers or Dr. Cowden or something about this? Or even KDM?

Have you had the LTT ELISPOT test? I guess you must have if you saw KDM within the last few years.

I understand your not being sure you even have Lyme..I feel the same way myself many times.

I cannot remember how long you have been ill, but 10 months is rarely enough to see improvement. KDM told me it would take 4 years for me! My inflammatory markers also went very high in the middle of treatment..I am told this is common.

Anyway, I hope somehow you are able to try herbals one day.

May I ask which probiotics KDM was recommending while you were on abx?

xoxoxoxoxo
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I know with some of the people I was in contact with at the time I was having treatment, people who were ahead of me in treatment, for some it did take more than 5 or 6 months for an improvement to begin, but I think I recall that most, perhaps all, had seen some kind of positive reaction soon after that point. I stretched it out to around 10 months and at that point didn't really feel it was going to happen.

I heard that about herbals too but honestly it doesn't make sense to me - as you point out, you're taking them to kill a bacteria, so the idea that they don't kill other good bacteria...well, I have my doubts about that and probably enough that I wont be able to risk it because of the UC.

My LLT came back 2, 2, 1 I think (from memory) which was at best borderline. My diagnosis of Bartonella seemed more reasonable because symptom wise I had a lot of Bartonella symptoms.

I was on these ones the whole time I was on the abx:
http://www.farmaline.co.uk/health/order/vitafytea-bififlor-forte-30-tablets/
 
Daffodil

Daffodil

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@snowathlete hi snow. thanks for letting me know. thats odd cuz it says that probiotic has lactic acid bacteria and apparently, we have too much lactic acid
 
snowathlete

snowathlete

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Daffodil said:
@snowathlete hi snow. thanks for letting me know. thats odd cuz it says that probiotic has lactic acid bacteria and apparently, we have too much lactic acid
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I only take a bifido one now which helped my gut somewhat. I tried one with lactobacillus and streptococcus and it quickly made my UC worse. So maybe this one KDM prescribed me wasn't the best option in the first place. Did he prescribe you a different one?
 
Daffodil

Daffodil

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snowathlete said:
I only take a bifido one now which helped my gut somewhat. I tried one with lactobacillus and streptococcus and it quickly made my UC worse. So maybe this one KDM prescribed me wasn't the best option in the first place. Did he prescribe you a different one?
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hi @snowathlete ...he prescribed VSL#3 which i could not take. After that, he recommended one i could not get here but i think it was a very weak one. now i regret spending so much on custom probiotics...i have a feeling i wasn't even tolerating Align! UGH my gut is very messed up. I dread what will happen a few yrs down the road. UC runs in my family even!
 
snowathlete

snowathlete

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Daffodil said:
hi @snowathlete ...he prescribed VSL#3 which i could not take. After that, he recommended one i could not get here but i think it was a very weak one. now i regret spending so much on custom probiotics...i have a feeling i wasn't even tolerating Align! UGH my gut is very messed up. I dread what will happen a few yrs down the road. UC runs in my family even!
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Go slow on the new probiotics when you start them and see how you go. You never know, might be fine. I hope so. It is so hard with our guts being such a mess and everything being so expensive to try and uncertain. I have so many supps I have tried and not got on with.
 
Daffodil

Daffodil

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snowathlete said:
Go slow on the new probiotics when you start them and see how you go. You never know, might be fine. I hope so. It is so hard with our guts being such a mess and everything being so expensive to try and uncertain. I have so many supps I have tried and not got on with.
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hi snow. well, i started getting diarrhea with Align so I am pretty sure I just wasted $120 on Custom Probiotics....very bad. I wasnt sure if it was Align causing it or the Tetralysal but now I am pretty sure it was Align. That really makes no sense if Align has only 1 billion bacteria....ugh I wish someone knew a lot about this so I could ask them what is going on.
 
snowathlete

snowathlete

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Daffodil said:
hi snow. well, i started getting diarrhea with Align so I am pretty sure I just wasted $120 on Custom Probiotics....very bad. I wasnt sure if it was Align causing it or the Tetralysal but now I am pretty sure it was Align. That really makes no sense if Align has only 1 billion bacteria....ugh I wish someone knew a lot about this so I could ask them what is going on.
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Align isn't a strain that will populate the gut, it just passes through so maybe that was why?

Another possibility is what fillers they put in with it?

@msf i take custom probiotics 4 or 5 strain bifido.
 
Daffodil

Daffodil

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@snowathlete ....yes, maybe. there is also that pesky controversy about people with leaky gut taking bacteria cuz of it leaking into bloodstream.

now i wonder if i should have ordered the same one you take.

anyway, i do hope your UC continues to improve.
xox
 
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