KDM abx protocol for borrelia

[Mark]

Kina Mark I also haven't really found a forum about lyme that matches the level of this one, a special lyme section here would be awesome.

Thanks for the feedback. We'll certainly looking be looking into the issue of forum sections for a variety of alternative diagnoses / missed diagnoses etc soon; it's the next step we have in mind following the recent upgrade of the forum sections.

It's interesting if there isn't a lyme forum to match PR, but also a little troubling. I would be a little concerned if that means there's a risk that the new forum might be so popular that it attracted a lot of new members in a way that detracted from our main focus on ME/CFS (and NEIDs) since that's our charitable objective. But I have no doubt that all the overlapping and missed diagnoses are highly relevant topics for many of our members, and I do think we need to find the right way to cover those issues.

 

[Allyson]

Hi,

There are more and more people with ME and Lyme. I'd like to have a special place on phoenix where we can share our experience, etc... Instead of having infos everywhere... What do you think?

Have a nice day

Clodomir

Yes a lot of PWME in Australia are now found to have Lyme so I agree a dedicated section fo lyme would be good - the testing is so complex.

I have had Aussie Lyme serology done which is negative but apparently also useless so will be looking into the next steps. Is POTS/OI a major feature of LYme can anyone tell me please> and low blood volume - I have both.

Thanks in advance

Ally

 

[Allyson]

Thanks for the feedback. We'll certainly looking be looking into the issue of forum sections for a variety of alternative diagnoses / missed diagnoses etc soon; it's the next step we have in mind following the recent upgrade of the forum sections.

It's interesting if there isn't a lyme forum to match PR, but also a little troubling. I would be a little concerned if that means there's a risk that the new forum might be so popular that it attracted a lot of new members in a way that detracted from our main focus on ME/CFS (and NEIDs) since that's our charitable objective. But I have no doubt that all the overlapping and missed diagnoses are highly relevant topics for many of our members, and I do think we need to find the right way to cover those issues.

HI Mark,

yes I think that is a good idea you have suggested there.

Interesting point about the charitable objective - could that be extended in any way or changed?
I imagine the ultimate objective is to get people who are very sick the appropriate research and treatment so they are well again.....yet if the major "umbrella" disease starts to get broken down into different diseases that would maybe need to be something to deal with too in some way? Just speculating here.....None of us know where we may land at this stage it seems....

Regards,

Ally

 

[brenda]

There are other Lyme dedicated forums particularly this one flash.lymenet.org

 

[sianrecovery]

filfla4 wow, great news on son! As for your husband, I went through a similar process with an ex-partner - he had a long recovery period, but ultimately regained nearly all of his functioning. BTW, I have used zyflamend on and off for a long time, and my husband uses it in acute episodes of joint inflammation. I found it useful. I don't take it all the time because of the wide mix of stuff in it, but when I do take, I tend to take large doses.
snowathlete - what dose of Kirkman's are you doing?

Everyone re lyme - I guess as more of us test more widely, the significance of bacterial and protozoan infection will emerge with greater clarity. Logically, there has to be a way of reflecting that here, rather than sneaking it in by the back door, because its clearly a part of what many of us are struggling with. Take the point on charitable objectives. Does it not really come under the same umbrella as any other infectious pathnogen? I mean, remember how excited we all were about certain viruses a while back...

 

[snowathlete]

filfla4 wow, great news on son! As for your husband, I went through a similar process with an ex-partner - he had a long recovery period, but ultimately regained nearly all of his functioning. BTW, I have used zyflamend on and off for a long time, and my husband uses it in acute episodes of joint inflammation. I found it useful. I don't take it all the time because of the wide mix of stuff in it, but when I do take, I tend to take large doses.
snowathlete - what dose of Kirkman's are you doing?

Everyone re lyme - I guess as more of us test more widely, the significance of bacterial and protozoan infection will emerge with greater clarity. Logically, there has to be a way of reflecting that here, rather than sneaking it in by the back door, because its clearly a part of what many of us are struggling with. Take the point on charitable objectives. Does it not really come under the same umbrella as any other infectious pathnogen? I mean, remember how excited we all were about certain viruses a while back...

sianrecovery - KDM hasn't put me on Kirkman's biofilm stuff, or any other brand. Maybe he will later? I think he does tend to tailor to each patient depending on the specific test results, so maybe he doesn't think I need it for some reason.

As brenda says, there are actually quite a few Lyme forums out there. Lymenet and MDJunction has a big Lyme subforum. There are others too.

I think having a forum for these topics on Phoenix is a good idea still because plenty of people with ME/CFS have these other diagnoses as well. I have Bartonella, and possibly Lyme, but I still have ME/CFS. Maybe we all have a tick borne infection that is causing our ME/CFS - we just dont know, but it's possible. Alternatively, it could just be a coincidental co-infection or a reactivation. Either way, people are talking about these things on Phoenix already anyway, because that overlap exists with ME/CFS and I think we'd rather talk about it here because we may well react differently to others with say Lyme, or Bartonella, because of the ME/CFS - so it makes sense to create a specific space for this stuff to live on Phoenix in my view. I don't think it would mean extending the objectives of Phoneix, unless there was a desire to do that at some point.

Best
Joel

 

[cigana]

Hi has anyone had a diagnosis and treatment from Prof KDM for Lymes disease? Was the diagnosis based on symptoms or tests or both? and Have you been treated, how is it going etc?

I was, based on tests but I think he suspected before the borrelia was positive. I do not know how he decides.
I have been undergoing treatment for about 9 months, no change in my symptoms, except that some are worse. I was also positive for bartonella and rickettsia. However my test results have improved (cytokines, C4a, soluble CD14 and CD57 etc.).

 

[suzanne]

Wow, this topic of borrelia/ lyme and ME really has drawn some debate and experiences. Firstly, I thank all of you for being so genorous in getting back to me on this site, including the PM's.

Just to capture the latest info on what is happening for me, I offer the following snippets:
I have had a fibro/ME diagnosis for 10 years. I live in Australia, where lyme is not recognised as being possible to contract within this country.

My dr has recently done the PCR test and I have a positive result for Borrellia and other co infection tests are yet to come.

I don't want to get all soppy on you all, but I cried all the way home from the drs surgery. The tears represented so many competing emotions- I am sure you guys all get it. Too much suffering; not enough belief system from the medicos; inadequate treatments; and a huge amount of my life having passed by with me trying to limp through as best I can.....blah blah

I have been truly gob smacked by this diagnosis and am still reading furiously about treatment. I am not saying that lyme is going to turn out to be the only feature of what is going on for me but I think it is significant to know about and try and deal with in the process of getting to a better plateau.

It is interesting to me that a 4 years ago I did the Marshal Protocol and was really well fro about 2 years- then I got sick again when I was on that protocol ( low dosed pulsed abx) and now the lyme disease makes so much more sense to me.

I am loathe to go down the abx path again but may have to. I am thinking I will do some of the Jernigan neutraceuticals first and try and get the pathogen load down first and then - if I have to- may need to add the abx. I am kinda hopeful that I can continue to work as I had to give up a wonderful career a few years back and am now loving my part time consulting work.

This is a bit long as a post, but I am so excited by the possibility of reaching a better level of wellness, I thought I should lay this out.

Oh, and I have contacted the Lyme Association in Aus ( I know it seems odd to have an association when the bug is not recognised here) but it seems that a growing body of people are now being recognised as having lyme in Aus. From this, I have found a dr who seems to know about Lyme and has been trained thru Infecto lab in Germany-

The next bit came as a huge surprise. I contacted him over email adn asked if he was willing to take on a new patient- and if he thought he could help. I was shocked when he phoned me the next day!

Yep, you could guess, I cried all the way home again. I was overwhelmed that there may be a dr to treat me in Aus that knows more about my illness than I do. I reckon that the stress of trying to treat myself just lead to a massive sobbing outpouring of emotion- twice in one week.

Getting back to the treatment issue- I am hopeful that if I get the pathogen load down I might tolerate the gcMAF better- for me the GcMAF has been really difficult to take at anything other than nono doses due to the inflammation ( IRIS). Perhaps if the pathogen load is reduced, I might do better...just speculation.

Oh, and I love the idea of a thread on lyme- nnot for Lyme in and of itself, but it may play out as a part of the profile of many ME sufferers.

I'll keep in touch...

 

[sianrecovery]

Great post Suzanne - and good luck with the next stage of the journey. Sounds like you have found some important parts of the jigsaw puzzle for you. That took courage and determination - you have my respect and admiration.

 

[Clodomir]

sianrecovery - KDM hasn't put me on Kirkman's biofilm stuff, or any other brand. Maybe he will later? I think he does tend to tailor to each patient depending on the specific test results, so maybe he doesn't think I need it for some reason.

Hi Snow,

KDM just put me on kirkman's biofilm after a month of clarithromycin, but it was because we didn't have the product in belgium. Now it is available. It is a supplement. Very expensive in belgium, a little less in UK, half the price in USA, but if I want to by it in US, I have to pay huge customs taxes....
If you want to know the exact name of the supplement ( My husband order it, but I don't remenber the exact name and my papers are downstairs, and I am tired... Sorry), go on kalida website and then, try to find the same on a british website.

Have a nice day

Clodomir

 

[self]

Hi All!
Ive had a positive LTT for borrelia from infectolab and KDM says i have a Lymes infection. But my GP does not accept this as proof that i have a Lymes infection, she did the usual NHS tests for Lymes and they were negative??. She also says that the the Clarithromycin 500mg per day is not the way they treat Lymes in Uk. I cant even get my pharmacist to dispense the Clarithromycin with the script from KDM, (even if Im paying as a private patient). Has anyone else had this problem and did Kdm help? Im writing to him to get a letter with a more detailed explanation of his diagnosis or maybe to get him to speak to them.
Also has anyone been on the Clarithromycin and did they have any side effects? did it make you feel worse than usual etc. Thanks for any help PLease!!!

 

[heapsreal]

Hi All!
Ive had a positive LTT for borrelia from infectolab and KDM says i have a Lymes infection. But my GP does not accept this as proof that i have a Lymes infection, she did the usual NHS tests for Lymes and they were negative??. She also says that the the Clarithromycin 500mg per day is not the way they treat Lymes in Uk. I cant even get my pharmacist to dispense the Clarithromycin with the script from KDM, (even if Im paying as a private patient). Has anyone else had this problem and did Kdm help? Im writing to him to get a letter with a more detailed explanation of his diagnosis or maybe to get him to speak to them.
Also has anyone been on the Clarithromycin and did they have any side effects? did it make you feel worse than usual etc. Thanks for any help PLease!!!

Im sure theres some online pharmacys that would help.

 

[snowathlete]

Hi All!
Ive had a positive LTT for borrelia from infectolab and KDM says i have a Lymes infection. But my GP does not accept this as proof that i have a Lymes infection, she did the usual NHS tests for Lymes and they were negative??. She also says that the the Clarithromycin 500mg per day is not the way they treat Lymes in Uk. I cant even get my pharmacist to dispense the Clarithromycin with the script from KDM, (even if Im paying as a private patient). Has anyone else had this problem and did Kdm help? Im writing to him to get a letter with a more detailed explanation of his diagnosis or maybe to get him to speak to them.
Also has anyone been on the Clarithromycin and did they have any side effects? did it make you feel worse than usual etc. Thanks for any help PLease!!!

The NHS are pretty useless in my experience. They don't deal with chronic cases very often and when they do they don't treat them properly. Though admitedly, a rare few do get lucky with their GP; but mine are a waste of time.

I am a patient of KDMs too, and have Bartonella and possible Lyme (just had LTT test, waiting for results).
I was on Clarithromycin for Bart and got it at a UK pharmacy eventually. You have to persist and specifically you must ask them to look in their rule book because it states in there in black and white that any EU prescription is legal and should be filled. It even lists the individual countries; Belgium, etc. The only requirement is that the prescribing doctor is registered in their country and they can check that. The licence number and contact details are on the prescription form for that purpose. I got mine from Boots. They all say no at first because they don't know the rules and most often have never seen a prescription from outside the UK before. Just explain that you are very sick you've seen a qualified and registered specialist and need the medicine he has prescribed that they can legally sell you if they check their rules. Be politely persistent and you will get there. Don't let them fob you off.

I was prescribed Clarithromycin and Rifampicin initially and after two months so far have felt pretty crap. Worse than before treatment. But this is expected (at least for Bartonella - I am not sure about Borrelia). If you take it and feel worse then contact KDMs clinic to check it is a typical reaction.

Getting some of the other stuff can be tricky too, assumign you have been prescribed other stuff, so if you're stuck and need help them drop me a private message.

Best
Joel

 

[self]

The NHS are pretty useless in my experience. They don't deal with chronic cases very often and when they do they don't treat them properly. Though admitedly, a rare few do get lucky with their GP; but mine are a waste of time.

I am a patient of KDMs too, and have Bartonella and possible Lyme (just had LTT test, waiting for results).
I was on Clarithromycin for Bart and got it at a UK pharmacy eventually. You have to persist and specifically you must ask them to look in their rule book because it states in there in black and white that any EU prescription is legal and should be filled. It even lists the individual countries; Belgium, etc. The only requirement is that the prescribing doctor is registered in their country and they can check that. The licence number and contact details are on the prescription form for that purpose. I got mine from Boots. They all say no at first because they don't know the rules and most often have never seen a prescription from outside the UK before. Just explain that you are very sick you've seen a qualified and registered specialist and need the medicine he has prescribed that they can legally sell you if they check their rules. Be politely persistent and you will get there. Don't let them fob you off.

I was prescribed Clarithromycin and Rifampicin initially and after two months so far have felt pretty crap. Worse than before treatment. But this is expected (at least for Bartonella - I am not sure about Borrelia). If you take it and feel worse then contact KDMs clinic to check it is a typical reaction.

Getting some of the other stuff can be tricky too, assumign you have been prescribed other stuff, so if you're stuck and need help them drop me a private message.

Best
Joel

Hi Joel
Thanks so much for your help. This might sound stupid but how do i send you a private message??

 

[self]

Hi Joel
Do you know if I can use my EHC card to get the pharmacists in the EU to dispense a prescription from a fellow member country free of charge??
The pharmacist here was telling me that if I go to an Eire GP, the GP will then write me an Eire prescription equaivalent to KDMs, which I could then bring back and get free of charge???
Does this make sense? Why would the Eire GPs prescription allow me to get it free ?? while Id have to pay for KDMs. Anyway I did go to an Eire GP and thats where the conroversy started , she wants to do more tests for Lymes and says that Clarithromycin isnt the right treatment.

 

[john66]

Regarding the biofilms-when I was going to a naturopath, I was taking a product called Allicidin to supposedly break up biofilms. I dont know of any scientific validity to those claims. J

 

[Sushi]

Hi Joel
Thanks so much for your help. This might sound stupid but how do i send you a private message??

I don't know if someone answered you privately, but an easy way is to click on snowathlete's avatar, a box will pop up and in the middle of the box are some options: one is "start a conversation." Click on this and a new page will open, give the conversation (private message) a title, then when finished, click on "Start Conversation" at the bottom of the page. Joel will get an alert in his inbox.

Sushi

 

[snowathlete]

Hi Joel
Do you know if I can use my EHC card to get the pharmacists in the EU to dispense a prescription from a fellow member country free of charge??

Good question. Interestingly, I was asked if I had my card with me when I was there and bought the prescription. But I was so tired that I didn't realise she was referring to this until afterward. She said she could give me a small number (not the two months I needed) with that, or the whole lot privately. It's funny cause we have more luck getting it for free via that method in another country than getting it in the UK (my GP wouldn't write me a UK copy prescription when i asked previously which i thought was an injustice really - UK specialist? no problem. a foreigner? oh no, cant trust those on the continent! So well worth asking in Europe though privately it was not expensive either.

The pharmacist here was telling me that if I go to an Eire GP, the GP will then write me an Eire prescription equaivalent to KDMs, which I could then bring back and get free of charge???
Does this make sense? Why would the Eire GPs prescription allow me to get it free ?? while Id have to pay for KDMs. Anyway I did go to an Eire GP and thats where the conroversy started , she wants to do more tests for Lymes and says that Clarithromycin isnt the right treatment.

I'd let them do more tests (why not - but make sure they inderstand the tests limitations, i.e. what species it foes and fors mot cover) but I doubt they will give you sufficient antibiotics for a chronic infection. Interestingly though in the UK when I got my first prescription filled months ago, which was for two months worth, the pharmacist asked what I had and when I told him he replied "this isn't enough" and I agreed and explained that my specialist would see me then to review treatment and prescribe more. So some do get it, but most do not.