Has anyone actually been cured by KDMs lyme treatment?

[SOC]

Antifunglas have just as much rational scientific foundation as antibiotics, otherwise they wouldn't be given to AIDS patients or patients with autoimmune conditions on a regular basis to help control symptoms, and there are countless scientific studies on the fatigue causing effects of ameoba and protoza and the damage they can cause, there are tonnnnnes of studies on gut flora and small intestinal overgrowth and dysbiosis causing malabsorbtion which leads to chronic fatigue ( i believe KDM does a mandatory breath test), and using antibiotics such as rifaximin, and metronidozle in micro biome modulation is a scientifically proven way to resolve issues, and some of the top M.E. reseraches in the world at the moment are focusing specifically on the microbiome and permeable gut membranes (which KDM himself has contributed to countless times in the past), and shifting the immune system using immune modulators like naltrexone, transfer factor, IVIG etc etc. is a go to of many leading fibro and M.E. doctors so i don't think these things are without rational at all...

I think you missed some critical words in @Valentijn's post. I didn't read her saying that NO gut treatments work, or that focused immune modulation doesn't help. I read it as saying the randomly trying therapies without a proper understanding of what's going on doesn't help. I've highlighted below the words I think are critical to understanding the full import of her post.

[I don't think there is much data supporting the use of infra red, most gut-healing protocols, non-specific changes in gut flora, or vaguely shifting the immune system.

 

[trickthefox]

I think you missed some critical words in @Valentijn's post. I didn't read her saying that NO gut treatments work, or that focused immune modulation doesn't help. I read it as saying the randomly trying therapies without a proper understanding of what's going on doesn't help. I've highlighted below the words I think are critical to understanding the full import of her post.

I read it as saying the randomly trying therapies without a proper understanding of what's going on doesn't help too.. i was just a little bit offended that without knowing me or the tests and treatments i've tried that someone would just come to that conclusion lol but all is forgiven

I was mostly referring to 'At any rate, I don't think it's fair to unload your past-random-treatment-baggage' and the implication that i was randomly trying non specific treatments without scientific rational, or that i am just trying things with no understanding about what i'm doing

I'm not critisising doctor KDM, infact im planning to see him, and many of the things I've tried have incorporated some of his ideas, but yes I do feel wary after having seen many specialists and having ended up worse, it's only natural. I dont plan on unloading my bagage (which is a heck of a lot for any M.E. sufferer) I'm just asking for people to give me some good or bad stories about the treatments that they've had with him so that I can make a balanced decision and decide where to go from here

 

[SOC]

I was mostly referring to 'At any rate, I don't think it's fair to unload your past-random-treatment-baggage' and the implication that i was randomly trying treatments without scientific rational

Did you have testing to know what you actually needed to treat? KDM will test to see the status of your gut flora and your immune system, and which pathogens (viruses, bacteria, fungi) you have. He then uses directed treatment for what is actually going on, rather than randomly throwing treatments at the situation without knowing specifically what's needed. I think that's the point. You can't compare extensive testing and specific, focused treatment to taking general OTC treatments not based on your specific condition. What KDM does is nothing like what you've already done. But you don't have to believe that. If you're not comfortable going to see KDM, don't go.

 

[trickthefox]

Did you have testing to know what you actually needed to treat? KDM will test to see the status of your gut flora and your immune system, and which pathogens (viruses, bacteria, fungi) you have. He then uses directed treatment for what is actually going on, rather than randomly throwing treatments at the situation without knowing specifically what's needed. I think that's the point. You can't compare extensive testing and specific, focused treatment to taking general OTC treatments not based on your specific condition. What KDM does is nothing like what you've already done. But you don't have to believe that. If you're not comfortable going to see KDM, don't go.

I'm not quite sure why you're assuming im just throwing things blindly at the problem, or taking over the counter treatments based on a few of my forum posts?

Yes i did have testing, thousands of pounds worth through breakspear and dr myhill, virus scanning, bacteria, white cells, allergies, immune reactions, breath tests, biopsies etc. etc. The main problem that showed was an ameoba which i succesfully treated with multiple courses of antibiotics and probably as a results I have an overgrowth in mostly sulfur reducing bacteria, with hugley reduced beneficial bacteria populations and have used various labs to confirm this (mainly streptococous, pretevoella, and desulfovibro) which goes hand in hand with my intollerence of sulfur and thiols, and negative reaction to supplements like NAC. To tackle this I have used rifaximin which has a somewhat wider range of antibiotic action and works well against strep, and bile salts which are effective against the pretevoella which has quite a high antibiotic resistant rate, along with supplementing non histamine producing probiotics like mutaflor, lactobacilus rhamnosus, and the bifidobacteria family. I'm tackling biofilm too using interfase just because the imbalance has been there so long, and the viridians species streptococous are known for making biofilms. I have candida IGG IGA and IGM antibodies for which I am using nystatin and occasionally more systemic antifungals, although i don't use these often for my livers sake. Using LDN to help with the pain, and brain fog which seems to be helping. Because I have been fighting gut issues for the better part of the past two years and have not made as much progress as I'd like i'm looking more into a stealth pathogen or bacteria like Lyme as being the cause, but for that i really need a doctor who understands this like KDM which is why im looking into him. I've had the western blot for lymes which turned out negative but know that can be notoriously inaccurate. I feel i need to say this again, I am not critising KDM, I'm not trying to say his methods are questionable, nor am I saying I don't believe that he is good at what he does, i just want to hear other peoples opinions.

I'm planning to go and see him, but what i really wanted was peoples personal positive accounts of visits with him so I can feel better about saving that much money for so long

 

[msf]

No offence, trickthefox, but you seem a little conflicted: you seem to want us to tell you that the treatments KDM prescribes are likely to be more effective than the treatments you've had so far, but when we tell you that and offer you reasons why this might be so, you tell us that the treatments you've had so far were reasonable, and presumably therefore had a reasonable chance of working...

 

[msf]

Oh, and again, no offence meant, but I would put all my money on KDM being a better doctor than you.

 

[maryb]

I do understand where you're coming from @trickthefox
Its so hard to remain positive about what doctors can offer, in a way we want a guarantee that 'this/the next' doctor will actually be able to help and not make us worse. Unfortunately it doesn't work like that, all we can do is as much research as we are able to, listen to the stories of other patients and then make our choice. KdM has helped many patients, as @justy said , some not, many others we don't know about from across Europe and further. All I know is he'll do his best to find the answers for you as an individual. But as I said no guarantees.
I wish you luck with your quest for recovery as I do with all those suffering.

 

[trickthefox]

I'm not trying to say I'm a better doctor than anybody @msf lol, I think you're completley missing my point, either that or I'm explaining myself badly. I'm just trying to say that the things i've tried are not just random, they were targeted treatments and did have rationale behind them, some did improve my quality of life and some really didn't.

Just because i think the treatments that i've tried were reasonable and rational, how does that conflict with the fact i think that KDMs treatments might have a good chance of helping too?

I'm not conflicted, in fact i really want a good doctor because having to do so much research without a good medical professional supporting me is overwhelming. I just want help

 

[msf]

Well then, my advice is to see KDM.

 

[trickthefox]

I kind of feel like we've gone in a big circle lol, but i love you all the same, if theres anyone who has any more KDM experiences i'd be grateful to hear them!

 

[msf]

That was the point I was trying to make. I suggest you try searching 'KDM lyme treatment.' Most of the people who spend lots of time on this forum will have ME, so I wouldn't be too surprised if you don't hear from anyone who has been cured.

 

[TiredSam]

I'm planning to go and see him, but what i really wanted was peoples personal positive accounts of visits with him so I can feel better about saving that much money for so long

That's what I thought you were doing, and to be honest I think that's how we all make decisions - do what feels right and then find some evidence to back it up and reassure ourselves that we're making the right decision. That's certainly how I came to my decision not to go. I think you've explained yourself very well, and are clearly very well informed and also honest with yourself. I wish you the very best of luck and hope you manage to improve your condition.

 

[trickthefox]

@TiredSam thanks bro You too, hope you get the answers and health you're looking for

 

[geraldt52]

...I'm not conflicted, in fact i really want a good doctor because having to do so much research without a good medical professional supporting me is overwhelming. I just want help

Have you considered waiting until some of the high quality research that is currently going on yields some results? All of us want help but to be truthful 30 years of seeing CFS specialists has yielded absolutely nothing for me...they have little to offer because they really have no idea what they are "treating".

That may change soon. I'm saving my money for that. In the meantime, I'll continue to do the only things that have ever really helped...being very careful and observant about what I eat, and being very careful about pacing.

5 years from now, I would put my money on you being no worse off for not having seen a CFS specialist now, with what they know now. JMO, of course, and good luck with whatever you do.

 

[trickthefox]

Y

Have you considered waiting until some of the high quality research that is currently going on yields some results? All of us want help but to be truthful 30 years of seeing CFS specialists has yielded absolutely nothing for me...they have little to offer because they really have no idea what they are "treating".

That may change soon. I'm saving my money for that. In the meantime, I'll continue to do the only things that have ever really helped...being very careful and observant about what I eat, and being very careful about pacing.

5 years from now, I would put my money on you being no worse off for not having seen a CFS specialist now, with what they know now. JMO, of course, and good luck with whatever you do.

Yep i've considered the acceptance and wait route too, i got very good at it last year infact! it's when my health started declining and progressing that I started panicing and looking for treatments, if it was a case of stable health I think i'd be much happier to wait and see, last year i was able to go to the gym, yoga, go swimming in the sea, and i could have happily lived like that until something better came along but this year some days i can barley go down stairs to make breakfast, and my food intolerences are progressivley getting worse meaning I can only eat about 5 things these days, but I very much get your point too and it's certainly something that comes into my thoughts, at the moment it just very much feels like i'm dying and i suppose it's human nature to resist that.

What i certainly am doing is trying to raise as much awareness as possible so that there can be some better funding for a cure for all of us! I might have landed myself a spot on the One Show to talk about M.E. so waiting to hear how that goes, and doing as much blogging and making as much videos and stuff as I can about M.E. just in hope that one day the right person or people might see it and feel compelled to act

this is some stuff i've been doing

 

[Scarecrow]

I might have landed myself a spot on the One Show to talk about M.E. so waiting to hear how that goes

That's great! Keep us updated.

 

[Scarecrow]

this is something I made last year

That's the best short I've seen on ME. Terrific quality.

 

[Sasha]

Excellent video, @trickthefox!

 

[Sasha]

That's the best short I've seen on ME. Terrific quality.

Me too! Top stuff.

 

[justy]

I understand entirely how you feel about trying to decide what to do. It's so hard for all of us here to know which is the right way to turn. Since seeing KDM and finding out I have at least 4 bacterial infections and have now added in MCAS into the mix I really wish I had gone and had treatment years ago. All the years of waiting and doing nothing has resulted in me losing a LOT of functioning. I also now have a mitral valve prolapse with regurgitation and am completely reliant on my wheelchair to go out of the house. Like you just going downstairs for breaksfast and putting my clothes on can do me in for the day.

I have let the infections I do have take even more of a hold and become even harder to treat by leaving it so long. Now I have so many other problems, that I didn't even know where possible 2 years ago, that I can't tolerate most treatments on offer, or they just make me worse.

I feel now that if I don't try I will eventually die from this illness, but on the other hand treatments often make me worse. I'm giving it 2- 3years to see how it goes. If I don't get ANY improvement I will stop and try and accept and spend my money on an easier house and off road wheelchair etc.

I had an appt at Breakspear last winter and I wasn't very happy with how it went - I felt they wanted ot push autonomic testing and immunotherapy which wasn't what I wanted to pursue. In fact immunotherapy is actually dangerous if you have MCAS, but they didn't seem to know this.