Any successful treatment of chronic long term lyme disease in Ireland?

mariamurray

Hi,

My boyfriend was diagnosed with Lyme disease last February. We think he has probably had it for a year. the doctor put him on 3 weeks of doxycycline, which hasn't helped at all. Since then he has been working with a herbalist, trying to treat it with herbs.

We heard Jack Lambert in the Mater in Dublin is the top lyme expert in the country. On his website (iddoctor) it says he charges €400 for a 30 minute consultation and prescribes a month of antibiotics. Has anyone been treated by him? Any success stories?

We're also thinking of maybe going to Germany or the US. He is in a lot of pain all of the time, he has terrible fatigue and brain fog. He spends most of his time in bed now and struggles with any relatively normal undertaking.

Any advice on this would be greatly appreciated.

tara73

hey, I'm so sorry what your bf is going through. I can't believe he's diagnosed with Lyme disease and he's not being treated properly.


3 weeks of antibiotics is a joke. I was never 100% diagnosed but I suffered like your bf with symptoms fitting and everything else like rheumy was ruled out.


I live in Germany at the moment and if you are really diagnosed with Lyme disease here you have to take at least antibiotics for three month without a break. They could also apply intravenous antibiotics for up to 4 weeks.


If you want I can give you a name of a doctor who does this. It will cost you around 2000€.

mariamurray

Hi Tara,

Thanks for the info, yes i'm interested in the name of the doctor. Where are you based? Do they offer antibiotics and any complementary treatment? We've been reading about places who treat with antibiotics but also with IVs of various nutrients etc to also try to build the body back up. Sounds like a good idea to treat with antibiotics but also with something to try to build the system back up.

Thanks for the post

Graces7

A terrible situation. Many with Lyme get wrongly diagnosed as with CFS/ME which is as bad but untreatable.

tara73

Graces7 wrote: »

A terrible situation. Many with Lyme get wrongly diagnosed as with CFS/ME which is as bad but untreatable.

Yes, it's horrible and I don't believe in the accepted tests if you have it or not. You know in Germany we have an obligatory health system means it's mandatory to be health insured, it's like a tax, the money (much money) is deducted every month automatically from your salary. It has advantages and disadvantages but that's another story. What I wanted to say is that the tests didn't show antibodies so they were adamant I don't have it. I suffered horribly (pain in every inch of my body, joints and other places) symptoms for more than 3 years, couldn't really work, but the docotors from the public health insurance refused to give and try antibiotics.

It's very possible I was already infected as a child and that I have chronic lyme disease and there are specialists who say that antibodies are not verifiable if you are a chronic case, these bacterias are 'clever' so to say, it's very possible they can 'hide' after such a long time or antibodies might be there but this tests simply are not detecting them, however.

So I had to find a private doctor and pay additionally to the money I pay every month obligatorilly to get treatment with antibiotics. And there are not many, even in Germany, who are specialised in this and giving you antibiotics. I live in a big city and there are a few available, but if you live in a smaller town or even rurally, there's nobody who you can go to.

It was like a miracle, after exactly three month of taking antibiotics the pain and everything was gone! It came back after 9 month and I had another treatment this time intravenous for 3 weeks and it was gone again. Fingers crossed it's gone forever.

So I feel so so bad for the people who seem to have it but don't get proper treatment because I've been through this nightmare. you suffer but doctors say you don't have it or even when it's diagnosed like here don't try a proper treatment. And I don't get it, it's not that difficult to prescribe the right antibiotics for the right amount of time.

P.S. Important to mention, I'm not a fan of antibiotics in general, I never take them if not really necessary and it should prescribed with caution and I know about all the damage it can do and is actaully doing also in the production of it in india and other countries but if you ever suffered like I suffered and obviously many other people, it should be prescribed and as can be seen in my case, it saved my life so to say.

Graces7

tara73 wrote: »

Yes, it's horrible and I don't believe in the accepted tests if you have it or not. You know in Germany we have an obligatory health system means it's mandatory to be health insured, it's like a tax, the money (much money) is deducted every month automatically from your salary. It has advantages and disadvantages but that's another story. What I wanted to say is that the tests didn't show antibodies so they were adamant I don't have it. I suffered horribly (pain in every inch of my body, joints and other places) symptoms for more than 3 years, couldn't really work, but the docotors from the public health insurance refused to give and try antibiotics.

It's very possible I was already infected as a child and that I have chronic lyme disease and there are specialists who say that antibodies are not verifiable if you are a chronic case, these bacterias are 'clever' so to say, it's very possible they can 'hide' after such a long time or antibodies might be there but this tests simply are not detecting them, however.

So I had to find a private doctor and pay additionally to the money I pay every month obligatorilly to get treatment with antibiotics. And there are not many, even in Germany, who are specialised in this and giving you antibiotics. I live in a big city and there are a few available, but if you live in a smaller town or even rurally, there's nobody who you can go to.

It was like a miracle, after exactly three month of taking antibiotics the pain and everything was gone! It came back after 9 month and I had another treatment this time intravenous for 3 weeks and it was gone again. Fingers crossed it's gone forever.


So I feel so so bad for the people who seem to have it but don't get proper treatment because I've been through this nightmare. you suffer but doctors say you don't have it or even when it's diagnosed like here don't try a proper treatment. And I don't get it, it's not that difficult to prescribe the right antibiotics for the right amount of time.

Rejoicing with and for you; thank you for an inspiring post.. cheers me!

took ill in my 20s and that was way back in the UK.
Just thought too; had been on a long foreign camping holiday all summer.. Got all kinds of bites.
Nothing on basic tests so over to the psychs; one report mentioned I had many real physical symptoms but they had no idea what that meant.

Nothing was known re ME and even now; well you will know. It took 30 wasted years to get to the truth and then it was " well, nothing we can do... yawn..." Lost my career, child bearing years, family. I SURVIVED.

But I picked myself up, got my medical notes fixed as in " Was never mentally ill ; was always M.E" and fled to ireland. New policy here; I make the running. NO works when asked to do beyond my slender strength.
I ask for serious pain relief for serious pain and live my life within my limits and am as at peace as I can be. at very late 70s I am winding down visibly but so much joy still. ( see my home page for my weblog)

My life is bed focussed with various forays! An d Living on a small peaceful safe island is a blessing and a healing.
Does not matter for me now: and that is fine. Prefer not to bang my head against any more brick walls!i

But to hear of young folk not getting the help that IS there makes me ... such a waste and inexcusable.

Wish i could do something... prayer here of course.

tara73

@Graces7, so sorry to hear your story.

surely, that was the case too, doctors telling me it's all psychosomatic. Always a great 'excuse' if they don't know what's going on or can't (not allowed) to think outside the box. I think they fear if they prescribe something for what is not 100% diagnosed the'll get a law case and lose their license. But then, why can private doctors prescribe it and don't fear being sued. They must be under some kind of regulation too?

I hope there will be more research and proper insight in the condition of chronic lyme disease in the following years as I also think it's doing the society and also the economy (and that's what it's all about, us bringing in the money, isn't it..:rolleyes:) a lot of damage with a lot of people who are not able to work because they are so sick and don't get treatment.

did you ever hear of the blue bellied lizard, native in california? google 'blue lizard lyme disease', it's so fascinating. You find everything you need in the nature, maybe we don't need antibiotics for this, just a beautiful blue bellied lizard would do the trick!:)

Graces7

tara73 wrote: »

@Graces7, so sorry to hear your story.

surely, that was the case too, doctors telling me it's all psychosomatic. Always a great 'excuse' if they don't know what's going on or can't (not allowed) to think outside the box. I think they fear if they prescribe something for what is not 100% diagnosed the'll get a law case and lose their license. But then, why can private doctors prescribe it and don't fear being sued. They must be under some kind of regulation too?

I hope there will be more research and proper insight in the condition of chronic lyme disease in the following years as I also think it's doing the society and also the economy (and that's what it's all about, us bringing in the money, isn't it..:rolleyes:) a lot of damage with a lot of people who are not able to work because they are so sick and don't get treatment.

did you ever hear of the blue bellied lizard, native in california? google 'blue lizard lyme disease', it's so fascinating. You find everything you need in the nature, maybe we don't need antibiotics for this, just a beautiful blue bellied lizard would do the trick!:)

Same story as with M.E. The consultant who finally twigged used the term, "post viral fatigue" and it was only on the ferry home when I was chatting to a neighbour and told him .. he said, " Oh that means M.E!"

While I was appalled it was such a controversial illness the relief! I had the internet by then and went into hiding for a year getting off all the psych meds . knowledge is power. The only " good " thing was that I was already on UK disability or as they called it incapacity and mobility allowance and o f course that stayed.

That lizard is amazing...