In Belgium to see KDM

[maryb]

I think people will continue to do what they think is right for them when posting about their experiences with ME docs, and also how they view what goes on within the BMA (for us in the UK) with regards to this illness, this is an important aspect of it for me.

I certainly wouldn't ban anyone from saying anything though - its a forum for all.
Anyway I think this thread has been well and truly de-railed........no more from me.

 

[szenn]

Sorry, I thought we were talking about ME/CFS, for which there is definitely no cure at present. What other diagnoses are you referring to? Are you talking about secondary conditions such as hypothyroid or POTS, or specific infections like Lyme Disease or EBV?

I'm finding your posts a little confusing, but maybe we are miscommunicating because I am thinking about what treatments doctors use in the US and you are thinking about what's available at "CFS Clinics" in the UK.

This thread is about Lyme disease and KDM

 

[szenn]

I think people will continue to do what they think is right for them when posting about their experiences with ME docs, and also how they view what goes on within the BMA (for us in the UK) with regards to this illness, this is an important aspect of it for me.

I certainly wouldn't ban anyone from saying anything though - its a forum for all.
Anyway I think this thread has been well and truly de-railed........no more from me.

That's a shame. I started this thread so we could all learn about lyme disease and KDM's treatment of it. We need to learn off each other. and pm's are all very well but i would not known about lyme or kdm if i had not seen snow athlete's threads here.

 

[szenn]

Been on treatment now for nearly seven months. My symptoms in the last week seem to have got worse.
Is this normal. I am seeing KDM on Tuesday

 

[snowathlete]

Been on treatment now for nearly seven months. My symptoms in the last week seem to have got worse.
Is this normal. I am seeing KDM on Tuesday

I don't know, good question. But, after about ten months I've stopped taking the abx. My hand was forced by my continuing weight loss from UC. I need to fix my gut before I go any further. And then I'm going to have to do so with more care for my gut, which might rule abx out.

 

[szenn]

I don't know, good question. But, after about ten months I've stopped taking the abx. My hand was forced by my continuing weight loss from UC. I need to fix my gut before I go any further. And then I'm going to have to do so with more care for my gut, which might rule abx out.

I am sorry to hear that snow, did you never feel better? How are you feeling now? better since being off?

What has e suggested to you?

 

[snowathlete]

I see him on the 20th so don't know what he'll say yet. I didn't consult him about stopping as it often takes a while to get a response as you know, so thought it would just make sense to wait till the 20th or just make the decision on my own, which is what I did this time.
I expect he'll want me to restart them in a few weeks but not sure ill be willing to so that. He knows a lot about the gut so hopefully he'll be willing to help me focus there instead. That's definitely where I want to focus.

 

[szenn]

I saw that you are back on Clarithomycin. Did the doctor treat your gut?

 

[szenn]

Hi

I have been on antibiotics for 11 months and my LLMD has now switched me to a Samento/Banderol regime. I have lyme, chylamydia pneumonia, mycoplasma and suspected Bart ( not a lot then!!) does anyone have experience of these herbs? Do they help with Bart too.

Any advice greatly appreciated.

 

[xrunner]

Hi @szenn
I treated Lyme, Bartonella and CPn.
I have used Samento and Banderol for about 3 months at full dosage but it didn't work for me at all, my mum (Lyme) did not get any results either (but she does well on Cat's Claw).

I know there are a number of well respected LLMD's around the world that use this protocol. I assume they base their decision on an independent study that Eva Sapi did a few years ago for Lyme where it came out as quite effective against pretty much (if I recall this right) any form of Borrelia, including biofilm formation.
The study was however in-vitro. Personally I am not convinced the protocol works as well in-vivo.
Having said that, I think it's worth a shot anyhow.

Regarding Bartonella and Mycoplasma, if you read Buhner's two books respectively on Lyme and the co-infections, the herbs that seem to work against these two microorganisms are others. I have not tried these specific herbs as antibiotics worked for me.

 

[Clodomir]

Hi @szenn ,

I have Lyme. I am on Samento, Banderol and Cumanda (for Bartonella). And for me, it seems to work. I am feeling better, but it will take 3/4 years to be (or try to be) like before... if possible
I didn't take all the drops in one time: I begin slowly as explain by my doctor.
I have a lot of herx (mostly fatigue and some pain but less).
I stopped my ABX IV end of december. so normally, the ABX effects must be "finished". And I still feel better and better (very slowly). Now, I have some projects: going on holiday, meeting people, etc..
I was bed bounded and now, I can do a few things: prepare a meal, going to shops, etc... One thing a day, not everything together. I have some "relapse" but less and less.
I am still like an old woman of 90 (I am half of it), but I am full of hope. I already live the worst, so ...
My husband who is also ill, goes better and is also on burner's protocol.

For us it works, but it is a very long struggle. 3 month is nothing in my case. I count in years...

So don't give up, try at least a year and then you will see.

all the best

Clodomir

 

[szenn]

Hi
I thought I should give an up date.
It has been 17 moths since I have been on treatment for Lyme disease. The first 9 months I was on combination anti biotics and since July 2014 I have been on Banderol and Samento. I have had some really good months, particularly from August until January but am experiencing a bit of a relapse now. I am due back to see KDM in April. My daugher also has Lyme disease and is progressing a lot better than me. How are other people getting on?

 

[Clodomir]

Hi Szenn,

It is now more than a year that I began KDM treatment, and I am better, with some ups and down. I slow down with the buhner's protocol and lots of herx disappear. My husband has also Lyme and he is much much better, but I was very ill. So maybe in 2 or 3 year, I will be back to normal. Unfortunately, I lost my job and could never work again: i was retired...
But i am happy, because i am so much better and i have some hope...

Have a nice day

Clodomir

 

[szenn]

I am so glad you are progressing Clod. It is reassuring to know there is hope for us all.

To be honest, I felt heaps better after having a name put on what was wrong with me. I felt mad in the first months of my illness and everyone around me thought likewise.

It still is a struggle, I work full time as a lecturer and tutor after school every day plus I am a single parent with two children.

Most days I feel like death warmed up. It hurts to move and my co ordonation and muddled speech make me look weird. I have already changed my job to a college with less students but lately I feel like I just can't work anymore. I am so tired all the time.Nobody understands Lyme in the UK so I often feel people think my illness is a bit psychsomatic.

I think I would have progressed better if I didn't work like a fool but someone's got to pay for the blood tests. I also eat badly and smoke; ridiculous and insane behaviour I know. I'm a Self saboteur who is ruining her treatment's good work.

So if I wasn't so silly, I'd probably be heaps better and that is thanks to KDM.
He is a funny chap: borderline rude, mildly aspergus in attitude but then he can be funny and engaging. I do think he cares a lot. he just doesn't do small talk.

Ultimately, he was the first to treat me with respect when I was ill. He diagnosed Lyme. He flagged up my daughter and he remains the only non virtual person I know who understands this illness.

I have improved, more importantly so has my daughter.

I really thank him for that.

Sorry about the long rant. But when I was first I'll, I wanted to see KDM stories that had a beginning middle and end. All the posts were about first visits so I was unsure about making an appointment.

So if there are any newbies out there, don't hesitate to ask questions and be assured that KDM is good.

 

[Daffodil]

about 2 years with KDM here; have seen him in person 3 times and will be seeing him again soon for more testing.

had some good days but only tests will show if there is positive change. very hard to tell after 21 years. treatment will undoubtedly take years.

if you ask if i think i am moving forward, i would say 'yes'.

have also come to believe prof garth nicholson in that most 'autoimmunity' is caused by intracellular bacteria.

 

[Folk]

I
I think I would have progressed better if I didn't work like a fool but someone's got to pay for the blood tests. I also eat badly and smoke; ridiculous and insane behaviour I know. I'm a Self saboteur who is ruining her treatment's good work.

So if I wasn't so silly, I'd probably be heaps better and that is thanks to KDM.
He is a funny chap: borderline rude, mildly aspergus in attitude but then he can be funny and engaging. I do think he cares a lot. he just doesn't do small talk.

Ultimately, he was the first to treat me with respect when I was ill. He diagnosed Lyme. He flagged up my daughter and he remains the only non virtual person I know who understands this illness.

I have improved, more importantly so has my daughter.

I really thank him for that.

Sorry about the long rant. But when I was first I'll, I wanted to see KDM stories that had a beginning middle and end. All the posts were about first visits so I was unsure about making an appointment.

So if there are any newbies out there, don't hesitate to ask questions and be assured that KDM is good.

I'm in the same position you were... I have an appt in april with KDM and am trying to figure it out if I really should spend all my money on that try. I've always heard him saying that he gets at least 50% of his patients to full remision (without even needing to return for check ups). And also that people under 30 should get at least 90% improvment with the treatment (and at least 50% for people over 50).

But when we read the stories here they don't really really match those claims hehehe... But I also know that most people who get remission don't keep posting on forums about it...


I gotta say, that lately I've been talking to patients and after seeing the treatments they are getting with remedies I've never even heard before but, wich made total sense, and after watching some lectures of his, I'm finding him everytime more briliant... But still with that doubt behind me! Would you send me a PM with the medications he prescribed (other than the abx)? That would be lovely

Can you tell us about your daughter and how's it going for her? Stuff like how old is she and what was her symptoms.


Plus: Damn if you just could stop smoking... I bet that it would make at least a 20% improvement difference... Perhaps I feel that way because just standing near someone smoking I get nauseous, headaches, stiff neck. Imagine if I were smoking everyday... And also, I'm in no way judging you, we all have our Achilles' heel, but at least try not smoking arround your daughter who's also recovering from the disease (probably you already do that and I'm just being obvious hehe).

My best wish for you
Good luck I really hope you and your daughter get better!
And since you already are getting better, let's be logical and think that it should only keep on going!

 

[Sushi]

I've always hear him saying that he gets at least 50% of his patients to full remision (without even needing to return for check ups).

I've never heard the "not needing to return for check ups" part as he asks his European patients to have return appointments every 3 months and the course of treatment is usually several years.

Sushi

 

[Folk]

I've never heard the "not needing to return for check ups" part as he asks his European patients to have return appointments every 3 months and the course of treatment is usually several years.

Sushi

He says it in this interview:

I'm not sure if it is on this part.. but it's in this interview.

 

[Sushi]

I'm not sure if in this part.. but it's in this interview.

It is not in this section. I'll look through the others later.

Sushi

 

[Sushi]

@Folk

I've always hear him saying that he gets at least 50% of his patients to full remision (without even needing to return for check ups).

Here is what he says on ME/CFS Alerts # 42:

I see them initially for a work up and then every 3 months.... 50% of the patients don’t need me anymore after a while.... They are better and don’t need any treatment any more.

Knowing a lot of his patients, "a while" is years unless you are a newly ill teenager.

Best,
Sushi