In Belgium to see KDM

[Orchid]

I have the same question Szenn. I have heard stories of people getting well again after being very severely ill with Lyme. If that's cure or remission I don't know. But if KDM claims an 88% success rate in treating Lyme (and he gets the difficult cases!), that sounds encouraging.

It would be great to hear from some of these people - but didn't you mention you met a lad in KDM's waiting room being treated for bartonella, who was cured after a year?

 

[szenn]

Yes, although I can't remember if it was Bart or lyme.
He said he was 100 percent better
I trust KDM but then I read all this stuff on the Internet about people never getting rid of it. Just feeling fragile I guess. Abx making me fragile.

 

[snowathlete]

I'm a bit late to the party with this post, and there are already some good responses from others, but just to throw in my two pennies:
In my experience, you won't get any help or approval from the NHS, when it comes to getting any treatment of any kind, anywhere, unless it is CBT or GET.

Some things on the NHS are OK, but poorly understood chronic illnesses are not one of them and ME/CFS is probably the worst because experts have been ridiculed and rubbished by the press and by psyciatry for decades.

Lyme testing is controversial too. Serology is more readily accepted because it is fairly mainstream but they usually won't trust a lab outside of the NHS. PCR is also a very mainstrem kind of lab test. You have to make your own mind up if it is worth it and about reliability, and weight up the risks, potential benefits, costs etc., against any alternatives you have, including doing nothing. I don't agree with Dr Weir that your Lyme test is 'likely unreliable', only that such tests have not yet been independently validated, so you don't know if it is reliable or not. It's an important distinction in my view.

Same when it comes to treatment.

I don't know as much about Lyme as Bartonella, but certainly it is possible to cure chronic lyme and I have read stuff by people who have made good improvements and who are still on treatment and getting better, as well as people who have come off treatment and are completely better.

 

[szenn]

Thanks Snow. Just a bit overwhelmed as I guess we all are.
Plus my. Stomach hurts and I feel bad today. Started abx six days ago. And have to be at work tomorrow. I know the uk docs won't help. All they have done so far is basically label me as a lunatic
I actually suggested chlamydia pneumonia to my doc seven months ago and he rolled his eyes and said 'whatever next'.
Are you feeling any better snow ?
Did KDM prescribe naproxen daosin and xyal? Do we have to take these as needed or are they required to take everyday.
Just didn't want to overload my system

 

[szenn]

I'm a bit late to the party with this post, and there are already some good responses from others, but just to throw in my two pennies:
In my experience, you won't get any help or approval from the NHS, when it comes to getting any treatment of any kind, anywhere, unless it is CBT or GET.

Some things on the NHS are OK, but poorly understood chronic illnesses are not one of them and ME/CFS is probably the worst because experts have been ridiculed and rubbished by the press and by psyciatry for decades.

Lyme testing is controversial too. Serology is more readily accepted because it is fairly mainstream but they usually won't trust a lab outside of the NHS. PCR is also a very mainstrem kind of lab test. You have to make your own mind up if it is worth it and about reliability, and weight up the risks, potential benefits, costs etc., against any alternatives you have, including doing nothing. I don't agree with Dr Weir that your Lyme test is 'likely unreliable', only that such tests have not yet been independently validated, so you don't know if it is reliable or not. It's an important distinction in my view.

Same when it comes to treatment.

I don't know as much about Lyme as Bartonella, but certainly it is possible to cure chronic lyme and I have read stuff by people who have made good improvements and who are still on treatment and getting better, as well as people who have come off treatment and are completely better.

Ps so glad to hear people are getting better. That is inspiring for all of us with lyme and the co infections xx

 

[Orchid]

Yes, although I can't remember if it was Bart or lyme.
He said he was 100 percent better
I trust KDM but then I read all this stuff on the Internet about people never getting rid of it. Just feeling fragile I guess. Abx making me fragile.

Yes - I spent some terrible weeks googling too much stuff. It would be funny if it wasn't so serious. I am trying to wrap my head round the enormous gaps in knowledge when it comes to Lyme and Bartonella. I have studied the official guidelines they use in Holland to treat chronic Lyme, and basically they say: we don't understand it, so we generally don't treat it.
There seems to be a lot of anecdotal evidence, individual cases, of people that got well on long-term antibiotics, but as these don't fit the 'evidence based' scientific model, they aren't included in 'mainstream' medical knowledge. But in the end, for us, it matters whether longterm treatment such as KDM and other ILADS docters prescribe works, whether it is scientifically validated and accepted into the mainstream or not.
But I get you on feeling fragile. As I mentioned, emotionally falling apart along with bizarre insomnia has been the worst symptom of my illness since this spring. The uncertainty and controversy certainly doesn't help.

 

[Lymelight]

Thank you
Hope your other daughter is negative
Why does KDM expect her to have lyme?
Did you have lyme when you were pregnant with your girls?

Got the results today and she's negative too ... such a relief !! We tested her because both my wife and I have been diagnosed with chronic Lyme.

 

[szenn]

Yes - I spent some terrible weeks googling too much stuff. It would be funny if it wasn't so serious. I am trying to wrap my head round the enormous gaps in knowledge when it comes to Lyme and Bartonella. I have studied the official guidelines they use in Holland to treat chronic Lyme, and basically they say: we don't understand it, so we generally don't treat it.
There seems to be a lot of anecdotal evidence, individual cases, of people that got well on long-term antibiotics, but as these don't fit the 'evidence based' scientific model, they aren't included in 'mainstream' medical knowledge. But in the end, for us, it matters whether longterm treatment such as KDM and other ILADS docters prescribe works, whether it is scientifically validated and accepted into the mainstream or not.
But I get you on feeling fragile. As I mentioned, emotionally falling apart along with bizarre insomnia has been the worst symptom of my illness since this spring. The uncertainty and controversy certainly doesn't help.

Yep, I am with you on all of that orchid.
My sleep is the worse feature of this too.
Did have anxiety but it seems to have subsided for the moment .

 

[snowathlete]

Thanks Snow. Just a bit overwhelmed as I guess we all are.
Plus my. Stomach hurts and I feel bad today. Started abx six days ago. And have to be at work tomorrow. I know the uk docs won't help. All they have done so far is basically label me as a lunatic
I actually suggested chlamydia pneumonia to my doc seven months ago and he rolled his eyes and said 'whatever next'.
Are you feeling any better snow ?
Did KDM prescribe naproxen daosin and xyal? Do we have to take these as needed or are they required to take everyday.
Just didn't want to overload my system

Totally understand the feeling of being overwhelmed, and I get exactly the same. At least we have this place to ask, and get opinions, even if they don't always give us clear answers.
What a terrible response from your local doc when you raised chlamydia p. he could have at least responded respectfully. Is it the docs themselves? Their training? Is it the system they work in? I don't know.

Thanks for asking after me; unfortunately I am still very unwell.

I wasn't prescribed naproxen or xyal, I'm afraid, so can't comment. I haven't even read much about them so can't suggest anything useful, but hopefully someone else will pop up who has tried it and give you some feedback.

Lymelight - delighted to hear that your daughter is clear!!

 

[szenn]

Got the results today and she's negative too ... such a relief !! We tested her because both my wife and I have been diagnosed with chronic Lyme.

That is fabulous news, I am really really please for both you and your wife.
Do you know if your wife had chronic lyme when she was pregnant with your girls?

 

[szenn]

Totally understand the feeling of being overwhelmed, and I get exactly the same. At least we have this place to ask, and get opinions, even if they don't always give us clear answers.
What a terrible response from your local doc when you raised chlamydia p. he could have at least responded respectfully. Is it the docs themselves? Their training? Is it the system they work in? I don't know.

Thanks for asking after me; unfortunately I am still very unwell.

I wasn't prescribed naproxen or xyal, I'm afraid, so can't comment. I haven't even read much about them so can't suggest anything useful, but hopefully someone else will pop up who has tried it and give you some feedback.

Lymelight - delighted to hear that your daughter is clear!!

It's been about four months now Snow hasn't it?
Poor you
What symptoms are you having? And when do you next see KDM

 

[szenn]

Found a Lyme forum:

http://www.mdjunction.com/forums/lyme-disease-support-forums

Some success stories there plus loads on diet natural remedies etc

Plus a yahoo support group called Eurolyme

http://groups.yahoo.com/neo/groups/EuroLyme/info

 

[szenn]

Hi,

Just found out my children have Lyme
I tested positive for Borrelia burgdorferi Elispot LTT from Infectolab

With red laboratories, I was negative on western blot and PCR
Positive for Chlamydia pneumonia on serology

My results:
Borrelia burg. Fully Antigen: +7
Borrelia OSP- MIX (OSPA/OSPC/DbpA: +6
Borrelia LFA-1:+ 2

Now I have found out that my children have it. At least I am certain my daughter has it. Not sure about my son. Can anybody interpret these results?
Are they reliable? Are infectolabs reliable?
What am I going to do?

I saw this doctor in England two months ago when I recently told him my results, he said the tests were rubbish so i know i will not get my case transferred to the NHS.
My children seem healthy, I am not
I am so confused

My daughter's results she is nearly 5
Borrelia burg. Fully Antigen:+5
Borrelia OSP- MIX (OSPA/OSPC/DbpA: 2
Borrelia LFA-1:+2

MY Son's results he is nearly 17:
Borrelia burg. Fully Antigen: + 2
Borrelia OSP- MIX (OSPA/OSPC/DbpA: +2
Borrelia LFA-1: 1

Other relevant results for me:

Relative lymhopenia
panel igG/igm and pcr zoonoses negative
nagalese activity: slightly increased
chlamydia pneumonia IgG positive
PGE2 increased
CD57+ lymphocytes: low in number
C4a:low
C3a:normal
soluble CD4: normal
cytokines in the serum: il-8 increased
urine nerotoxin: negative
foodstats normal
faecal microbial analysis: high gram positive/gramnegative bacterial ratio low% bifidobacterium


Should I trust these results?
Can anybody advise me?

 

[Daffodil]

Hi Szenn. I am wondering if you could clarify...your daughter has a positive ELISPOT for Borrelia from infectolabs but is not sick?

I am on antibiotics now for Borrelia beacuse of positive ELISPOT.

Thank you

 

[szenn]

Yes, my daughter has it but I am not sure if my son has it. The results are hard to interpret.
They only got tested last week, so results were super quick...don't know why. i waited 2 months.
No, she is not ill, apart from many upset tummies

 

[Sushi]

Yes, my daughter has it but I am not sure if my son has it. The results are hard to interpret.
They only got tested last week, so results were super quick...don't know why. i waited 2 months.
No, she is not ill, apart from many upset tummies

The numbers on the Infectolab LTT test seem to be what counts. Did they indicate whether they found your son't test positive or negative? My numbers were so low that it was a clear negative.

Sushi

 

[szenn]

No, they are the only numbers I saw
Someone on mdjunction said all our results are low and my son is borderline. Guess, I'll know more when I can get to speak to KDM

 

[Lala]

No, they are the only numbers I saw
Someone on mdjunction said all out results are low and my son is borderline. Guess, I'll know more when I can get to speak to KDM

Unfortunately the results of your son are positive, too. Mine were 0, 1, 2 and they were interpreted as positive. 2 is borderline but infectolab considers everything above 1 positive.

 

[Lala]

You can write directly to the lab and they will reply.

 

[szenn]

You can write directly to the lab and they will reply.

thanks lala
Are our results low?
are you on treatment