I am booked in to see Prof. de Meirleir in January

[WillowJ]

sorry it's been so rough, but glad to hear you've put on some weight. take care

 

[szenn]

Thanks Justy, yes, things have been pretty tough going,
Things are better than they were a month or two ago though. About a month ago I decided to stop the abx treatment. I did this primarily because I had tried everything else to stop my weight loss and get my UC under control, and I felt the abx were probably contributing to the disease state. If I didn't stop losing weight I was going to have to have lots of tests to see what the cause was as my gastro didnt feel it was due to the UC. I also was at a point where I had been on the abx for ten months without improvement and although I know that Bartonella can take a long time to treat, without initial improvement, I felt like I should have had some sort of positive sign at that point, at least a feeling that treatment was working and improvement would come later - but I didn't really feel this.
Having stopped the abx my weight loss stopped. In fact I have put on a couple of pounds. My bowel movements have improved and my colon feels less inflammed. I would not say that I am in remission yet, but I am going in the right direction slowly and I hope that a couple of months further on I will be there. I still have a couple of weeks of Prednisolone to take and so what happens after that will be important. I hope that I can get in remission without more drugs, but we'll see.
I am actively working on improving my gut flora. My test from before my abx treatment started, showed a lot of dysbiosis, probably consistant with most people with ME/CFS. The abx will have made things worse. So I am working to improve things with diet, probiotics, fermented foods and prebiotics. I think it's all helping, though Its complex and I can probably only achieve so much.

As I'm focused on my gut at the moment there may not be much I can do about the Lyme/Bartonella. I need to research what herbs that can be taken for it will do to gut flora, but as they are aimed mostly at killed the pathogenic bacteria (in the same way as abx are) my feeling is that they probably will also negatively effect gut flora. Fixing my gut flora may have some impact on my immune system of course, but I am not expecting that my immune system will suddenly be able to handle the Bartonella/Lyme.

I'm going to be reluctant to go back on anything that will effect my gut flora really negatively, because I know it could make my UC so much worse again. Tricky situation. I guess I would do it if I felt there was a good chance that it would get rid of those infections, but that hasnt been my experience so far.
I would point out at this point, that some people undoubtably do improve their health with abx to tackle Bartonella/Lyme. Just that others don't, there are no guarentees, and I, unfortunately, appear to be one of these others that don't improve.

I was due to see KDM a couple of weeks ago, but I got a cold and on top of everything else it was too much, I coudln't make it and had to cancel. I've not been great since really, so haven't got around to sorting out what happens next. My intention is to phone this week and try to arrange a telephone consult. I don't know what KDM will be able to do to treat me given these limitations. I'm hoping he has something useful to say regarding improving my gut.

Glad to hear here are some improvements snow, sorry to hear about the lack of success with the abx. would the intravenous abx be better for you

 

[Tito]

@snowathlete
I once read that nicotine patches help UC sufferers. I do not know whether it is true, but it might be worth researching it.
Good luck!

 

[cigana]

Thanks Justy, yes, things have been pretty tough going,
Things are better than they were a month or two ago though. About a month ago I decided to stop the abx treatment. I did this primarily because I had tried everything else to stop my weight loss and get my UC under control, and I felt the abx were probably contributing to the disease state. If I didn't stop losing weight I was going to have to have lots of tests to see what the cause was as my gastro didnt feel it was due to the UC. I also was at a point where I had been on the abx for ten months without improvement and although I know that Bartonella can take a long time to treat, without initial improvement, I felt like I should have had some sort of positive sign at that point, at least a feeling that treatment was working and improvement would come later - but I didn't really feel this.
Having stopped the abx my weight loss stopped. In fact I have put on a couple of pounds. My bowel movements have improved and my colon feels less inflammed. I would not say that I am in remission yet, but I am going in the right direction slowly and I hope that a couple of months further on I will be there. I still have a couple of weeks of Prednisolone to take and so what happens after that will be important. I hope that I can get in remission without more drugs, but we'll see.
I am actively working on improving my gut flora. My test from before my abx treatment started, showed a lot of dysbiosis, probably consistant with most people with ME/CFS. The abx will have made things worse. So I am working to improve things with diet, probiotics, fermented foods and prebiotics. I think it's all helping, though Its complex and I can probably only achieve so much.

As I'm focused on my gut at the moment there may not be much I can do about the Lyme/Bartonella. I need to research what herbs that can be taken for it will do to gut flora, but as they are aimed mostly at killed the pathogenic bacteria (in the same way as abx are) my feeling is that they probably will also negatively effect gut flora. Fixing my gut flora may have some impact on my immune system of course, but I am not expecting that my immune system will suddenly be able to handle the Bartonella/Lyme.

I'm going to be reluctant to go back on anything that will effect my gut flora really negatively, because I know it could make my UC so much worse again. Tricky situation. I guess I would do it if I felt there was a good chance that it would get rid of those infections, but that hasnt been my experience so far.
I would point out at this point, that some people undoubtably do improve their health with abx to tackle Bartonella/Lyme. Just that others don't, there are no guarentees, and I, unfortunately, appear to be one of these others that don't improve.

I was due to see KDM a couple of weeks ago, but I got a cold and on top of everything else it was too much, I coudln't make it and had to cancel. I've not been great since really, so haven't got around to sorting out what happens next. My intention is to phone this week and try to arrange a telephone consult. I don't know what KDM will be able to do to treat me given these limitations. I'm hoping he has something useful to say regarding improving my gut.

Hi Snowathlete,
Sorry to hear that the treatment is no turning out as you'd hope. I am in a very similar situation to you (though without the problem of UC). I've been diagnosed with Lyme/Bart by KDM and have been on abx for a very long time, also around 10months (not counting the breaks), but I have seen zero improvement as a result.
And that makes it really hard to continue. If I had any positive sign that they were helping I would carry on, but right now I feel like there's no point.
The strange thing is that in the past (about 2.5 years ago) I did have a very positive response from high strength abx (at the time I did not know I had Lyme/Bart), but that does not seem to be happening any more, so I wonder if the disease has moved into a different stage.
I was also positive for Rickettsia.

 

[maryb]

@cigana
don't want to depress you but I'm sure I read 3yrs of oral a/biotics vs 6months IV for Lyme.

 

[cigana]

@cigana
don't want to depress you but I'm sure I read 3yrs of oral a/biotics vs 6months IV for Lyme.

Yeah I've read similar. But I think that people who go for 3yrs feel the positive benefits earlier than 10months. I've never read of anyone who felt absolutely nothing for 2.5years on abx then suddenly responded.
If I could find a single person who felt nothing for ages then suddenly improved, I'd be convinced enough to carry on for sure.
Problem is, very few people share their experiences

 

[maryb]

that is depressing I agree. I suppose one way would be to ask have you got worse? I have slowly over the past 3 years without proper treatment.

In addition I also think in my case the bacteria is hijacking the mercury as each time I have an amalgam out I get worse and don't recover back to where I was.

and yes I agree - wish more people would share instead of us having to hunt around for experiences positive or otherwise. I have seen people say the IV a/biotics have helped but then others @Jenny ?? they didn't, maybe have the wrong person, or @brenda
@Clodomir says definitely feeling better after IV and is now on herbal protocol from KdM.
See if they can offer any info.

 

[cigana]

that is depressing I agree. I suppose one way would be to ask have you got worse? I have slowly over the past 3 years without proper treatment.

In addition I also think in my case the bacteria is hijacking the mercury as each time I have an amalgam out I get worse and don't recover back to where I was.

and yes I agree - wish more people would share instead of us having to hunt around for experiences positive or otherwise. I have seen people say the IV a/biotics have helped but then others @Jenny ?? they didn't, maybe have the wrong person, or @brenda
@Clodomir says definitely feeling better after IV and is now on herbal protocol from KdM.
See if they can offer any info.

Thanks for the links to others - I'll definitely check their threads!
Would be interesting to know why @Clodomir went on IV and how long it took before he felt any improvement.

@snowathlete are you considering IV? That would obviously bypass the gut and therefore be a better option for you. But then I know you're in the UK and that is problematic.

EDIT: no I have not got worse, but then I was always able to be partially active. The biggest improvement to my health came when I switched location, somehow that now seems to be a bigger issue than Lyme treatment.

 

[maryb]

Yes changing location has helped many - something about the mould connection , using the same channels as bacteria, so if you alleviate one the body can try to fight the other rather than both of them - if you understand what I mean....... my ME brain

On my biggie list to move house but - with 30yrs of stuff - its a big throw out and needs more than me to do it unfortunately.

 

[snowathlete]

@snowathlete
I once read that nicotine patches help UC sufferers. I do not know whether it is true, but it might be worth researching it.
Good luck!

It seems that people who smoke are somewhat protected against developing UC. But of course the risks associated with smoking are greater than the benefits. I've heard of using patches like you mentioned, but i havent looked into it yet. I probably will look into it at some point.
My Gastro still wants my full body CT scan though so i have that to go through first and see where i am. The colitis recovery is certainly two steps forward one step back, so hard to judge things, but still some slow progress i guess.

I have had a huge ramp up in inflammation the last couple of weeks though. It coincided with stopping the prednisolone, and i guess it will be a while till my body readjusts. I have had pretty bad acne, which only started after the steroids stopped, but thats actually fairly common from what ive read. And my pomphlox on my hands and feet have flared right up, the worst ever on my hands. My knees feel arthritis like alongside all of this and i generally feel crap. So, still a way to go for me, but i am hoping that things will calm down over the next couple of weeks.
To make things harder for me - why not, right? - I am working on bringing my sleep forward to more normal times. My 3am was becoming 4am and that's when I decided i had to try and do something about it, so i'm now managing to be in bed, trying to sleep between 1 and 2am. I feel pretty pleased with myself for having managed that the last few nights so far. My ultimate aim would be to make midnight my bedtime. We'll see.

@cigana - thanks. Sorry things are similar for you. I know what you feel like. It's so frustrating because some people do get improvement, and it sucks if you are not in that group. I think IV can be an option for some if you can afford it (i can't) but my guess would be that if oral didnt work at all, then why would IV? IV also does effect the gut flora, so it doesn't spare them. This alone means that for me, it is practically impossible.

Basically, I'm screwed. Well, until Rituximab (hopefully) works out. Or until someone/or some people, donate the missing $1M to Lipkin so he can take a good look at our guts. Or until someone else (hopefully) finds out what the heck is causing all our grief. Till then, I'm back in the waiting room I think.

 

[Sushi]

I've been on abx for Bartonella for about 2 months now--early days, I know! And I am getting a roller coaster response with some very tough days, followed by some very good days (better than before starting abx). I know this is a long haul but I seem to be responding to the drugs.

I will begin adding in Cowden herbals soon.

Sushi

 

[Jenny]

that is depressing I agree. I suppose one way would be to ask have you got worse? I have slowly over the past 3 years without proper treatment.

In addition I also think in my case the bacteria is hijacking the mercury as each time I have an amalgam out I get worse and don't recover back to where I was.

and yes I agree - wish more people would share instead of us having to hunt around for experiences positive or otherwise. I have seen people say the IV a/biotics have helped but then others @Jenny ?? they didn't, maybe have the wrong person, or @brenda
@Clodomir says definitely feeling better after IV and is now on herbal protocol from KdM.
See if they can offer any info.

Yes, I had 12 weeks of IV ceftriaxone some years ago, and 3 years of a variety of other abx before and after. They didn't do a thing.

 

[cigana]

Basically, I'm screwed. Well, until Rituximab (hopefully) works out. Or until someone/or some people, donate the missing $1M to Lipkin so he can take a good look at our guts. Or until someone else (hopefully) finds out what the heck is causing all our grief. Till then, I'm back in the waiting room I think.

What about trying "extreme avoidance"? Seems right now better than other options.

 

[maryb]

@Jenny
thanks for replying, were you diagnosed with Lyme?
Seems the choice of antibiotic is critical if treatment is to succeed.

 

[Thomas]

Honestly, if you carry any of the lyme and/or mold susceptible genetic HLA DR haplotypes that Dr. Shoemaker has identified you can be on antibiotics for lyme and co-infections for 25 years and will unlikely improve on antibiotics alone.

Sad but true. It's too bad KDM is just throwing antibiotics at all his lyme patients without checking their haplotypes.

 

[cigana]

Honestly, if you carry any of the lyme and/or mold susceptible genetic HLA DR haplotypes that Dr. Shoemaker has identified you can be on antibiotics for lyme and co-infections for 25 years and will unlikely improve on antibiotics alone.

Sad but true. It's too bad KDM is just throwing antibiotics at all his lyme patients without checking their haplotypes.

How does Shoemaker treat Lyme patients that have the "bad" haplotypes? Is it the same way he treats mold patients (Questran, Creatine, Nasal Staph, VIP)?

 

[Thomas]

@cigana his exact protocol would depend on exposure and other lab work but yes the items you mentioned would be in there. It seems to me that those in the ME community have the toughest time with it.

I'm not saying I have the answers - I'm a patient just like everyone else here that's looking for ways to get better. What I am saying though, is someone as smart as KDM should not be throwing long and high doses of antibiotics to lyme folks without knowing their genetic type and likely response (or lack of response) to antibiotics alone.

 

[Sushi]

Honestly, if you carry any of the lyme and/or mold susceptible genetic HLA DR haplotypes that Dr. Shoemaker has identified you can be on antibiotics for lyme and co-infections for 25 years and will unlikely improve on antibiotics alone.

Sad but true. It's too bad KDM is just throwing antibiotics at all his lyme patients without checking their haplotypes.

He checks their haplotypes. (my bolding)

Sushi

 

[Thomas]

@Sushi @cigana I stand corrected. My apologies. Did he comment as to which haplotype subset may be associated with those patients who have recovered with his treatment vs those who haven't? I have the multi susceptible 11-3-52b. So do most "hypermobile" types.

 

[cigana]

He checks their haplotypes. (my bolding)

Sushi

Hi Sushi,
Do you know which lab he uses and which genes he checks? I was not offered this, but I would like it.