Lyme validity

[Marky90]

So i had my phone appointment with KDM

In honesty, i had my doubts, but the more i talk to this guy, the more i realise why people rate him

He said looking at my results, he thinks the most sensible approach is to treat my gut first, he said that he wasn't sure if the lyme was an issue or not, he said 4 out of 5 people that test positive dont actually have a problem with it, which opens up a whole different debate over wheather some people who don't look at the whole picture are treating with long courses of ABX needlessley and not seeing improvements.

He said that the results indicate huge levels of bacterioids in my small intestine which are out of balance (not SIBO just too many of the wrong kind), which would have been triggered by an immune assult (which he reffered to as the match) which could be lyme, the vaccine I got at 19, or mumps. He said there was no point going after something like lyme until the fire was put out ("we'll deal with the fire first, then look for the match") He said there is a chance that by bringing my gut health into balance, other things will fall into place.

I was some way relieved as with all the research I was doing (I know being your own google doctor is never recommended, but I just can't help myself when I'm sat around feeling like death!) was pointing towards jumping in at the deep end with long courses of IV ABX... perhaps that will come in the future, but for now, we're treating things sequentially with pulsed targeted antibiotics, probiotics, and things which will raise immune function.

I would go down the natural route, but in honesty, ive done years of things like oregano, olive leaf, neem, monolaurin, etc etc. and have nothing to show for it except an attick FUUULLL of supplement bottles and a collection of amazon reciepts that would make me look insane or like an absolute hypchodriact to a healthy person

Anyway! Just thought I'd keep y'all updated

Much love, hope winter isnt being too hard on any of you!

Thanks for the update!
Such a pain not knowing where to start, but the above approach sounds sensible

By the way I would not rule out ME..
Good luck!

Ps: WInter in norway is really warm, we reap the benefits of global warming.. :S

 

[msf]

Hmm, are you sure he said 4/5 who test positive don´t have a problem with it? Perhaps his understanding of this has changed recently, but a quick straw poll would suggest that, in the past, if you tested positive by LTT then he treated you for Lyme. I´ve found that KDM (like most doctors) often gives short answers to questions, and that these can sometimes give the questioner the wrong idea. For example, he might have given you the idea that Lyme was a less important issue than the gut, when in reality it´s just that the gut needs to be treated first.

Marky90, I´m pretty sure KDM hasn´t ruled out ME either, he has too many ME patients on his hands to be able to see non-ME patients as well.

 

[trickthefox]

Hmm, are you sure he said 4/5 who test positive don´t have a problem with it? Perhaps his understanding of this has changed recently, but a quick straw poll would suggest that, in the past, if you tested positive by LTT then he treated you for Lyme. I´ve found that KDM (like most doctors) often gives short answers to questions, and that these can sometimes give the questioner the wrong idea. For example, he might have given you the idea that Lyme was a less important issue than the gut, when in reality it´s just that the gut needs to be treated first.

Marky90, I´m pretty sure KDM hasn´t ruled out ME either, he has too many ME patients on his hands to be able to see non-ME patients as well.

He said that there were perfectly healthy people walking around who can draw positives on these tests. He did say that it could be a factor, but also said there was a chance that by correcting the gut I could be restored to health, and said we wouldnt know until we got there

He did make out that the problems needed to be adressed sequentially, (when i asked him about VEGF etc. he said that we shoudnt even be thinking about those things yet) and did say it's going to take a while, but he said that from my results, he couldn't say conclusively whether lyme was my issue until we'd adressed the gut

 

[trickthefox]

I suppose if you go see KDM whilst feeling like crap, and you don't have major gut issues or any other major viral infection, and test positive for lyme, it makes the most logical sense to assume that lyme is the culprit

 

[msf]

Ok, it makes more sense now - when he said 4/5 don´t have a problem with it, he was probably talking about the population as a whole, rather than just the ME population. This wouldn´t be as surprising, since we know there are plenty of healthy people who test positive by WB.

 

[digital dog]

Can you let us know the names of the supplements etc he has put you on?

 

[Marky90]

Hmm, are you sure he said 4/5 who test positive don´t have a problem with it? Perhaps his understanding of this has changed recently, but a quick straw poll would suggest that, in the past, if you tested positive by LTT then he treated you for Lyme. I´ve found that KDM (like most doctors) often gives short answers to questions, and that these can sometimes give the questioner the wrong idea. For example, he might have given you the idea that Lyme was a less important issue than the gut, when in reality it´s just that the gut needs to be treated first.

Marky90, I´m pretty sure KDM hasn´t ruled out ME either, he has too many ME patients on his hands to be able to see non-ME patients as well.

Sorry I didn`t mean to imply that he had

 

[trickthefox]

Can you let us know the names of the supplements etc he has put you on?

Sure man, i wont get my treatment plan until next week but I can P.M. you when i do, but also I want to add that im pretty sure he's going to write a plan up taking into account every single test that he's done on me individually, and prescribe abx/supplements accordingly, so the last thing id wana do is write down what im taking, someone else to follow that and get even more sick. We are all kind of guinnie pigs when we're given a diagnosis like M.E.

 

[trickthefox]

Ok, it makes more sense now - when he said 4/5 don´t have a problem with it, he was probably talking about the population as a whole, rather than just the ME population. This wouldn´t be as surprising, since we know there are plenty of healthy people who test positive by WB.

Yeah sorry I should have made that clear! I think he was pointing it out just to make me aware that there was a chance that lyme wasn't necessarily the culprit given i had such high readings for a messed up gut.

(At least thats what im hoping, maybe I just interpreted it that way because thats what i wanted to hear after feeling rather down about lyme ) Anyway, if i make some progress with the pulsed ABX and probiotics ill be sure to let everyone know!

 

[Dufresne]

I'm happy to hear KDM doesn't think being Lyme-positive means that's the primary cause of disease for all of us. There's a number of problems that compound a condition such as ours and I think if you don't identify these and deal with them then antibiotic therapy may be ineffective, or even make you worse. I was beginning to get the impression KDM was a bit too trigger-happy with the antibiotics.

There's not a shred of doubt in my mind that I've borrelia, but I'm fairly confident it doesn't cause even a quarter of my misery. As it stands now, it's the last aspect of my illness I intend to target.

My order of treatment looks something like this:
Diet-done
Gut-done
Ambient toxins-done
Detox-ongoing
Brain tuners and palliatives-ongoing
Babesia-in the process
Borrelia-will address when all the others are a resolved as best they can be

 

[SOC]

... the last thing id wana do is write down what im taking, someone else to follow that and get even more sick. We are all kind of guinnie pigs when we're given a diagnosis like M.E.

That's smart thinking. KDM tests each individual extensively and devises a protocol based on that particular person's situation -- symptoms, pathogens, other test results. The right treatment for you could be very wrong for someone with a different set of gut bacteria or different balance of bacteria.

People need to be cautious about following treatment plans devised for other patients. At present there seems to be a lot of differences in how ME is expressed in us, so what works for me could be bad for another PWME. We can talk about what worked for us, but that shouldn't be taken as encouragement for other people to blindly follow that treatment without the proper testing, evaluation, and follow-up.

 

[trickthefox]

That's smart thinking. KDM tests each individual extensively and devises a protocol based on that particular person's situation -- symptoms, pathogens, other test results. The right treatment for you could be very wrong for someone with a different set of gut bacteria or different balance of bacteria.

People need to be cautious about following treatment plans devised for other patients. At present there seems to be a lot of differences in how ME is expressed in us, so what works for me could be bad for another PWME. We can talk about what worked for us, but that shouldn't be taken as encouragement for other people to blindly follow that treatment without the proper testing, evaluation, and follow-up.

I learnt that the hard way when i first got this illness and would spend time on cure zone, or even looking through these forums in the early days, and read a success story, and be filled with hope thinking it was as simple as just following those protocols, and always ended up disappointed

 

[trickthefox]

I'm happy to hear KDM doesn't think being Lyme-positive means that's the primary cause of disease for all of us. There's a number of problems that compound a condition such as ours and I think if you don't identify these and deal with them then antibiotic therapy may be ineffective, or even make you worse. I was beginning to get the impression KDM was a bit too trigger-happy with the antibiotics.

There's not a shred of doubt in my mind that I've borrelia, but I'm fairly confident it doesn't cause even a quarter of my misery. As it stands now, it's the last aspect of my illness I intend to target.

My order of treatment looks something like this:
Diet-done
Gut-done
Ambient toxins-done
Detox-ongoing
Brain tuners and palliatives-ongoing
Babesia-in the process
Borrelia-will address when all the others are a resolved as best they can be

When you say 'gut - done' just curious how you came about that? treating my gut has been without a doubt the hardest thing, 3 years later (before this I still had M.E. but could enjoy a fat plate of pancakes with no repercussions) and a diet which literally is 70% chicken 20% fat 10% salads (if i differ from this hell breaks loose) and so many different combinations of herbals, probiotics, eliminating all parasites and amoebas, even fecal transplants and other things, it still won't budge, which is why I'm considering pulsed ABX as per KDMs suggestion

 

[Martial]

So nothing has been published?

No, nothing of significance, but the results from patient response are what matters to me. And in that regard herbs seem to be an extremely steller treatment to facilitate full recovery. You can however find herbs for use as antimicrobials in other studies, and in treatment of other infection with success. At the end of the day vitro dish use doesn't really account for much either. Nothing wrong with antibiotics but there is definitely more then one approach that can be utilized.

 

[digital dog]

I would never follow someone else's protocol (or ANY protocol for that matter) but it would be interesting to see what this doctor recommends.

 

[bertiedog]

When you say 'gut - done' just curious how you came about that? treating my gut has been without a doubt the hardest thing, 3 years later (before this I still had M.E. but could enjoy a fat plate of pancakes with no repercussions) and a diet which literally is 70% chicken 20% fat 10% salads (if i differ from this hell breaks loose) and so many different combinations of herbals, probiotics, eliminating all parasites and amoebas, even fecal transplants and other things, it still won't budge, which is why I'm considering pulsed ABX as per KDMs suggestion

Did KDM talk about Rimfaximin at all for SIBO? Just interested cos it seems to come up quite often when everything else to do with improving the gut seems to fail.

Pam

 

[Dufresne]

When you say 'gut - done' just curious how you came about that? treating my gut has been without a doubt the hardest thing, 3 years later (before this I still had M.E. but could enjoy a fat plate of pancakes with no repercussions) and a diet which literally is 70% chicken 20% fat 10% salads (if i differ from this hell breaks loose) and so many different combinations of herbals, probiotics, eliminating all parasites and amoebas, even fecal transplants and other things, it still won't budge, which is why I'm considering pulsed ABX as per KDMs suggestion

I'd had terrible brain fog from early childhood. Dozens of courses of antibiotics for recurrent strep throat and ear infections, a high sugar diet, unaddressed wheat sensitivity, and nascent Lyme/ME really took their toll on my gut ecology. At thirty-two I cut sugar and carbs from my diet and started eating a lot of garlic. I experienced considerable die-off of what I believe was candida. I'd wake up, without fail, drooling and not knowing where I was. This was bad for a couple months and then recurred whenever I'd eat sugar/carbs and then garlic for the next year or so. I also took Nystatin and tried ketoconazole but don't feel these treatments were nearly as strong. Nowadays I don't have any gut problems from eating sugar in reasonable quantity.

I've done several parasite cleanses. RenewLife makes a good one, in my oopinion, called Paragone, which also led to me discovering wormwood which did great things for me. I also used a parasite nosode (homeopathy) which produced die-off for some time. In fact this is the only homeopathic to continue working for me past a couple doses.

I did a fourteen day course of Rifaxamin which helped the first time around, but didn't seem to do much of anything the second time I tried it.

I've experimented with most probiotics and am not sure which, if any, have helped. However I find probiotics to be really interesting as a single dose can produce fairly profound mental/mood changes. Unfortunately this almost always burns out my energy as a stimulant might. Though I think I'd go back to experimentation if I can stabilize my energy/redox. I've also consumed all sorts of fermented foods at different times.

Addressing food sensitivities will also go a long way toward fixing your gut. A rotation diet continues to pay off for me.

Lastly moving from a moldy house reduced my gut inflammation/reactivity. I think if you can control gut inflammation your gut immunity will actually have a chance to settle down. Binders like chlorella, cholestyramine, bentonite, and activated charcoal might be worth a try.

I still do very poorly, for whatever reason, on a diet with even moderate amounts of complex carbs in it. I eat a lot of protein, loads of veggies, and a bit of sugar (usually in fruit).

My Metametrix GI panel came back normal except for "parasite present, taxonomy unknown" which they claim is quite common and nothing to worry about.

I'm taking antibiotics and antimalarials these days and should really go back to the fermented foods, but I haven't had any resurgence of gut problems thus far.

Do you have many GI symptoms?

 

[trickthefox]

Did KDM talk about Rimfaximin at all for SIBO? Just interested cos it seems to come up quite often when everything else to do with improving the gut seems to fail.

Pam

I havnt actually got SIBO, just way to many bacteriods (45% when it should be 10%) i took rifaximin once before and it didnt help, i think were going to choose antibiotics which go after bacterioids!