Help needed in the Netherlands!

[Joe]

Hello BrainTalk Members,

I need your help. I am a US citizen living in the Netherlands. I have been struggling with Lyme and 3 co-infections for almost 4 years. I have recently learned about the ILADS treatment guidelines. I have spoken in my Dutch doctors about the use of high-doses of antibiotics for longer periods of time. It ends up that it's illegal in the Netherlands for doctors to follow the ILADS treatment guidelines (http://www.lymenet.nl/forum/viewtopic.php?t=2123). My doctors also don't believe that I am ill. They think I'm crazy.

How can I get a prescription for anti-biotics? My insurance company refuses to assist treatments in the US. I have been without a job/income for over 6 months so I can afford many options.

The Netherlands has a serious Lyme Disease epidemic, 13,000 cases a year! (http://www.eurosurveillance.org/ew/2006/060622.asp#2)

Thank you,

Joe

[lymebytes]

Hi Joe. I am sorry you are so sick. Why would it be illegal for your doctor to follow the ILADS guidelines?

You are not crazy. Dealing with these diseases is crazy. Having co-infections definitely complicates treatment and progress.

Go to Euro Lyme Disease Support Group at http://health.groups.yahoo.com/group/EuroLyme/ Hopefully someone there can recommend a doctor for you.

Do not give up okay? Good help is available. Please keep us posted on your progress.

[Joe]

Doctors in the Netherlands have to follow the CBO-richtlijn (medical guidelines) for treating patients. The CBO-richtlijn state that chronic-lyme is treated with the maximum of 4 weeks antibiotics. It’s also impossible to find a doctor who can recognize late stage infections. The Netherlands is strongly against the use of antibiotics in humans but provide their livestock with daily amounts of antibiotics. I would be better off as a cow.

[kpprhd]

Joe

So sorry you are so sick-please know that in the US if you have a hard time finding LLMD's-all other specialist inc. Inf. Dis will only treat for 4weeks. Absurd is it not? Best to you
kpprhd

[Joe]

I wish I could get 4 weeks of antibiotics. I've only been allowed 2 weeks. My vision is nearly lost, my bones are all messed up, nose bleeds, heart complications, no memory of yesterday and the doctors tell me that I'm just stressed.

How do I go about getting antibiotics without robbing a pharmacy? I am looking for options.

[lymebytes]

Hi Joe. Have you posted on Euro Lyme to see if there is a doctor you could see?

[Joe]

Hello lymebytes, I have been searching for a doctor in the Netherlands for the past 3 years. I have finally located the one and only doctor in the Netherlands but he is too busy. Mind you an average year 13,000 people catch Lyme Disease in the Netherlands (http://www.eurosurveillance.org/ew/2006/060622.asp#2). He is too busy for new patients. Other doctors will not put their medical licence on the line to provide me with antibiotics. I located a ILADS doctor in Germany but my insurance company will not cover the cost until I find 2 Dutch doctors willing to write letters explaining my condition and the treatment. Dutch doctors don't agree with ILADS.

I am giving up on doctors. I just need the antibiotics.

Just found out today that a friend's mother caught it last month. She showed 2 different doctors her EM Rash. They both said that it wasn't from a tick but an allergy. She was lucky that she quickly found a third doctor willing to give her one weeks worth of antibiotics.

It's insane how many people suffer from Lyme Disease in the Netherlands.

[Joe]

I have been having seizures, bell palsy and crabbed limbs today. My head aches are intense and my vision keeps fading. The last seizure was just a while ago. It’s been the worst one yet. It happened while I was on the phone with a doctor. He sent me some ibuprofen in a taxi. The only way I have a chance is if I get antibiotics. I can’t get them from a doctor in time nor will they give me enough.

Does anyone know of a good website for buying antibiotics?

Death doesn’t scare me. I’m scared of having to live with unrecoverable brain damage.

[2mag]

hi joe

so sorry to hear of this
you end up having to fight for your health

i was in the same situation a year aglo.
lesions in the brain, muscle stuff clonus, dental problems
and could not get out of the bed
no diagnosis no insurance
prayed for a miracle and tried the herbs ------that was my only alternative

lots of good information out there

2 mag

[Joe]

lots of good information out there



Where is this good information?

[doves-song]

just to say my heart goes out to you.

I too am an American citizen living outside the US. Was finally properly diagnosed after 16 years of misdiagnosis. Despite my positive IGM, my doctors here just rolled their eyes at me. I am very ill with neuro lyme.

I ended up needing to go to the US to see a lyme specialist. My family had to pay, as we are struggling with daily expenses. My doctor will consult via the phone afterwards, but he is very expensive.

Columbia University hospital in New York is doing some kind of study that includes neuro-lyme testing (spect scan, cognitive testing etc.) This is free, and they pay a little towards travelling expenses.

There are conditions of acceptance, one is that the patient will take amoxycillin. I'm allergic, so I can't participate.

If this sounds interesting to you, I will try to find out the info for you.

Good luck!

(ps hi to all, I'm a newbie here, but originally from the myasthenia gravis board ---I was misdx with MG and was being treated with a high dose of steroids, long story, another time. Hi to all)

[2mag]

here is a good web site to start with

http://www.lymeinfo.net/
and some organizations

Lyme Disease Association (LDA)
International Lyme & Associated Diseases Society (ILADS)
Time For Lyme (TFL)
CA Lyme Disease Association (CALDA)
Lyme Disease Foundation (LDF)
The Wilder Network
Canadian Lyme Disease Foundation


Joe

I have relied on the I LADs guidelines for Lymes disease
http://www.ilads.org/files/burrascano_0905.pdf

Dr B's article - he discusses proper diet and supplements with abx
although i did not have abx - i was able to follow the recommendations

this site is a large board
you can get lots of information
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=029917

there are a few alternative doctors
try neuraltherapy.com
and there are some good books Healing Lyme by Steve Burhner (sp?)

and a movie - documentary that is in the works
you can view the trailer

http://www.openeyepictures.org/auction/


Joe i hope you get more information
and keep us posted as to how things are going for you

mag

[Sonsie]

Here's another source for support in Europe: http://www.lymenet.org/SupportGroups/Europe/
I hope you can find some useful information. Failure to obtain diagnosis and treatment is a global problem. :(

[Joe]

I have contacted many Lyme organizations in the US and the Netherlands throughout the years. Phone call after phone call and email after email.

[Joe]

Tomrrow I have an appointment with a Lyme specialist in Germany.

[Joe]

Well, my transportation to Germany fell through. I'm unable to meet with the Lyme specialist in Germany.

[Joe]

Tuesday I met with Dr Hoffman in Amsterdam. He uses the ILADS treatment guidelines. Thrusday I started my IV treatment.

I feel so relieved. I woke up yesterday and today without any stress of finding a doctor or antibiotics.

[Joe]

I am now 2 weeks into my ILADS treatment with Dr Hoffman. I have been noticing many improvements to my health.

[blimeyitslymie]

So glad you found someone to help you, and more importantly, that you are feeling better.

Is there health insurance coverage in the your country which covers the IV treatments? Do they have restrictions on length of treatment coverage?

Hope you continue to heal swiftly.

Blimey

[2mag]

hi joe

glad to hear you are improving

Did the llmd put you on supplements - probiotics
get well
mags

[Joe]

blimeyitslymie - No my insurance company doesn't cover the treatment.

2mag - Yes the doctor provides Pro-Biotics. It makes a huge difference with the treatment.

I'm having a tough time convincing my parents to help out with the cost. I am not sure if I will be able to complete the treatment.

I don't think my parents believe that I am ill and I don't think they agree with the ILADS treatments. My mother talked to her GP about Lyme and was informed about Post-Lyme.

I am also having a tough time with housing. My roommate wants me out of the appartment before Christmas. I haven't worked since Feb. I can't afford a place on my own. The government housing program doesn't believe that I am ill.

[Joe]

Well, I had to stop my treatment at Dr Hoffman's clinic. My parents have decided not to help me with the cost of the treatment. My insurance doesn't cover the cost of the treatment either. I'm not sure when and if I will be able to start the treatment again.

I'm lossing my place to live in a few weeks. I have applied for housing assistance but I have been declined. I have been living here legally for nearly 6 years so it seems that I should qualify for some assistance.

I'm not very happy :confused:
I want this to end.

[blimeyitslymie]

Joe,

I am so sorry to hear about your situation and all the added stress. Weren't you started on IV abx by Dr. Hoffman (an ILADS doc)? What happened?

Godspeed,
Blimey

[Joe]

I had to stop my IV treatment at Dr Hoffman's clinic. My parents have decided not to help me with the cost of the treatment. My insurance doesn't cover the cost of the treatment either.

[blimeyitslymie]

I am in the same boat...my insurance denied coverage of my IV treatments as well. So sorry.

[Joe]

Medical insurance is a scam! Why do we pay for it? What is it for? :mad: :mad: :mad:

[Joe]

On Tuesday I find out if I am being kicked out of the Netherlands because my immigration attorney didn't have the time to advice me or send a letter of appeal concerning my residency permit. I will have to leave the country on either Thursday or Friday. The attorney hasn't had enough time to advice me on when I have to leave.

I have to find a new place to live! Does anyone know of a country that has an reasonable immigration policy, insures that their insurance companies cover necessary medical treatments and allow doctor to cure Lyme Disease? I now know that the USA nor the Netherlands can offer these items to it's legal residents.

[Joe]

Well, I've relocated to Switzerland hoping the legendary Swiss doctors could sort out my Lyme Disease. Turns out that I'm unable to find any LLMD doctors in Switzerland. No one believes that I am sick.

[Buttons2]

Joe, seems to me if you cannot get continued RX for IV anti-biotics you have no choice but to try the best possible way to cure yourself. What are you doing right now to boost your immune system & have you considered alternative treatments?

I'm thinking there is a doctor in Belguim that treats Lyme but I could be WAY off base! There must be some Lyme patients in Europe however.....have you researched & found any support groups,etc?

Have you seen any improvement in your symptoms?

Not to push aside your hitting brick walls.....but maybe we could help you improve while you wait for some luck with finding a doctor?

And I understand your anger & frustration with insurance & medical profession. I actually got so fed up I dropped my insurance last fall......I asked myself a simple question: "in the past 7-8 yrs had even ONE of the many different doctor's I'd been too actually done ONE thing to help me?" The answer was no, in fact they had made my stress levels over the top & I decided it was time to just get on with my life the best I can.

Never give up hope! And have some faith in your body's ability to heal itself. Your choices are limited right now,go with what you can.....Buttons