In Belgium to see Dr de Meirleir

[snowathlete]

Glad you got some answers @Valentijn - wish i could do IV abx. More effective, quicker and less stress for your digestive system!

 

[Hanna]

Also glad you have a path to follow Valentijn. As I live in Israel (but comes from France, which is infasted by tics) , I was advised to see one LLMD who works in the Netherlands but has also a practise here in Israel. Perhaps you know him : he is Dr Durk Meijer ?
I am so sick that I have been postponing for years travelling to Dr De Meirleir, and I don't see a chance in the near future...

 

[Valentijn]

Also glad you have a path to follow Valentijn. As I live in Israel (but comes from France, which is infasted by tics) , I was advised to see one LLMD who works in the Netherlands but has also a practise here in Israel. Perhaps you know him : he is Dr Durk Meijer ?
I am so sick that I have been postponing for years travelling to Dr De Meirleir, and I don't see a chance in the near future...

I haven't heard of him, but I don't really hang out on the Dutch forums.

 

[Hanna]

Thanks Valentijn, I understand.

 

[Thinktank]

He said it's actually easier to do IV antibiotics in the Netherlands than in Belgium, and there'll be no problem with me using the prescription for it here. And since it's several times per week for an extended period of time, that'll be a lot more convenient as well. Hell, the city hospital just moved to a new site that's a 5 minute drive or 10 minute scootmobile ride away

Is it really? From what i've read it's nearly impossible or very difficult to get the proper ILADS IV abx treatment in the Netherlands because you gotta find a Dutch doc. who's willing to follow Dr. Meirleirs treatment plan.
I read a few Dutch blogs from lyme sufferers and the ordeal they have to go through to get treatment is just heartbreaking. I don't want to go through all that hassle so i'm going to do my 12-weeks IV abx treatment abroad.
If you do pull it off to get the IV abx in Amersfoort please do let me know!

 

[maryb]

maryb wins the typo award!!

typo??

 

[PDXhausted]

Glad that you've found something to treat @Valentijn -- I'm really interested to hear your experience as you go. Thanks for sharing with us!

 

[roxie60]

Valentin, I'm glad you finally got a dx. Not happy fr you that it is Lyme. I also have been told there is a strong suspision I have Lyme. My WB tests came back negative according to CDC but because I had a couple of positives and thre INDs a specialist in Lyme (had to strong arm my PCP to consult with this specialist) flt strongly that my WB results made her suspicious that I have late stage lyme (I'm guessing almost ten years now).

@Valentijn I need to know more about this LTT test. Is this available in the USA? I really want a more definitive test results (other than 'suspect' lyme).

I am now on 3000mg/day of amoxicillin. This is my 5th week and though I still have bad days I really think I feel a slight improvement (however I am skeptical since my hopes have been dashed before thinking I wa getting better and it was just a lull before the next crash).

I hope you see improvement. Sorry to se he wants to put you on IV abx. Did he not want to try oral antibiotics?

 

[roxie60]

Seems lately I am seeing more and more members showing up positive for lyme or lyme highly suspected.

 

[Valentijn]

@Valentijn I need to know more about this LTT test. Is this available in the USA? I really want a more definitive test results (other than 'suspect' lyme).

It is available in the US. I think http://www.melisa.org/metals-disease/diseases/borrelialyme-disease offers it, though I don't know where they have the Special Request Form.

Sorry to se he wants to put you on IV abx. Did he not want to try oral antibiotics?

It sounds like the IV antibiotics are more effective on later stage Lyme, and also might have less of an impact on the gut. I think the time needed for treatment also tends to be shorter with the IV - months instead of years?

 

[Katherine]

Seems lately I am seeing more and more members showing up positive for lyme or lyme highly suspected.

Yeah, I'm beginning to wonder if there are any people visiting KDM who don't come away with a Lyme or suspected Lyme diagnosis. That's not an inflammatory remark, just an observation. I have also been to visit KDM. It would just be interesting to know the figures.

Also, why are some patients who have been given a late stage lyme diagnosis being offered IV antibiotics and others not, despite having the same diagnosis?

 

[leela]

I personally don't think it odd at all that people with an acquired immune disease like ME would show a high percentage of nasty infective agents
able to take hold in their bodies. EBV,CMV, Lyme and co's, HSV, VZV, HHV6, mycoplasma, CPn, enterovirus, staph, strep--all are found in high frequency in ME patients in some combination or another. Really not surprising given the state of our immune systems. These pathogens are very common in humans in general, just usually kept in check or more readily treatable.

 

[maryb]

Yeah, I'm beginning to wonder if there are any people visiting KDM who don't come away with a Lyme or suspected Lyme diagnosis. That's not an inflammatory remark, just an observation. I have also been to visit KDM. It would just be interesting to know the figures.

Also, why are some patients who have been given a late stage lyme diagnosis being offered IV antibiotics and others not, despite having the same diagnosis?

I wasn't diagnosed with Lyme and know a couple of other patients who weren't.

I think IV a/biotics are only an option for people either able to get to the clinic or have a healthcare system that actually accepts his diagnosis and treatment recs - also for those of us in Europe which takes notice of the EU - I mean - if Kdm prescribed IV a/biotics for me would my GP go along with it? no........

 

[Katherine]

I wasn't diagnosed with Lyme and know a couple of other patients who weren't.

I think IV a/biotics are only an option for people either able to get to the clinic or have a healthcare system that actually accepts his diagnosis and treatment recs - also for those of us in Europe which takes notice of the EU - I mean - if Kdm prescribed IV a/biotics for me would my GP go along with it? no........

I agree, but the point is that in my case, I wasn't asked if I could get to the clinic or if I had a doctor in the UK that was able to prescribe IV antibiotics. For me, given the option, I can potentially do both. I was just curious if other patients had been given the option or discussed it. I know there are others who were not asked and I wondered if there were any other factors determining whether patients received IV or not.

Mary, what were you diagnosed with if you don't mind me asking?

 

[maryb]

@Katherine
KdM would know that you wouldn't get IV a/biotics in the UK. I suppose its about whether the clinic is in a position at the time to take on new patients wanting IV's - I would ask.
Me? He just found gut bacteria etc. I had to stop going due to personal reasons.

 

[Sushi]

I agree, but the point is that in my case, I wasn't asked if I could get to the clinic or if I had a doctor in the UK that was able to prescribe IV antibiotics. For me, given the option, I can potentially do both. I was just curious if other patients had been given the option or discussed it. I know there are others who were not asked and I wondered if there were any other factors determining whether patients received IV or not.

Mary, what were you diagnosed with if you don't mind me asking?

KDM has had many UK patients try to get IV abx for Borrelia and/or Bartonella. He would assume that since you are in the UK, you could not get them as no one else has succeeded as far as I know.

Sushi

 

[Katherine]

KDM has had many UK patient try to get IV abx for Borrelia and/or Bartonella. He would assume that since you are in the UK, you could not get them as no one else has succeeded as far as I know.

Sushi

Sushi, while I see your point, it is not acceptable to assume that someone cannot get the best treatment available. My doctor has ordered tests that have been deemed impossible to get for other CFS patients. I'm not relying on the NHS either, I have a private doctor and he will work with me on anything within reason. I'm lucky I have a good relationship with him. I think we would all agree that patients should at least be asked first before they proceed with treatment. I'm not pressing the issue, just stating that it's common sense that patients should be asked.

 

[Valentijn]

Yeah, I'm beginning to wonder if there are any people visiting KDM who don't come away with a Lyme or suspected Lyme diagnosis. That's not an inflammatory remark, just an observation. I have also been to visit KDM. It would just be interesting to know the figures.

I think the tests find Bartonella in quite a few patients instead, or other bacterial or viral infections. During our appointment he happened to mention that in about 15% of cases he doesn't find any underlying infections at all. I think there are also KDM patients here on PR who have not had Lyme detected.

Also, why are some patients who have been given a late stage lyme diagnosis being offered IV antibiotics and others not, despite having the same diagnosis?

I'd imagine it's based on the availability of treatments. As Sushi mentioned above, health care doesn't really exist in the UK unless it is approved by a very inflexible and unhelpful system - patients are not going to have their doctors agree to IV antibiotics there. But the situation is supposedly very different here in the Netherlands, and getting IV antibiotics as prescribed by a European doctor shouldn't be any problem. For Americans, cost might be the biggest factor - can the patient afford IV antibiotics, or is oral the only option, and distance to the necessary medical facilities there can also be a major factor.

 

[Katherine]

I'd imagine it's based on the availability of treatments. As Sushi mentioned above, health care doesn't really exist in the UK unless it is approved by a very inflexible and unhelpful system - patients are not going to have their doctors agree to IV antibiotics there. But the situation is supposedly very different here in the Netherlands, and getting IV antibiotics as prescribed by a European doctor shouldn't be any problem. For Americans, cost might be the biggest factor - can the patient afford IV antibiotics, or is oral the only option, and distance to the necessary medical facilities there can also be a major factor.

I agree, all of the above are factors that would influence whether the patient's own situation would enable them to have access to IV antibiotics. My point is that all treatment options should be discussed before prescribing drugs. It's important that each patient is given the choice of exploring what might be available to them, and if IV antibiotics are not presented by the doctor as an option, then it should be explained why. Particularly if it is being offered to other patients with the same diagnosis. I'm not stating anything out of the ordinary here, it's just an observation.

 

[leela]

@Katherine, this sound slike something you might want to discuss directly wth KDMs office, if you feel your own options were not sufficiently addressed there.