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Old 05.07.2009, 16:10
Niranjan
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Lyme disease support

Hi folks,
Perhaps a long shot; I am wondering if you know any family that is fighting Lyme disease advanced stage (late diagnosis).

My ex-Professor’s daughter, a young lady now, she has been an outstanding student, but had been having weird symptoms for the last two and a half years. She was only recently diagnosed by a well-known Lyme specialist based in San Fransicso (Dr. Ralph Stricker ). She is now in Seattle, and the battle will continue from there.

Lyme is a tick borne disease, incurable when diagnosed late (as in the present case) and because of its chronic nature and debatable response to treatment, insurance support is also limited and contentious.

I am writing this post hoping to hear from families wanting to connect and exchange support and information through email, and nothing like it if they are from the same part of the world.

p.s. Some useful forum discussions on prevention and early diagnosed cases exist here and here. (with a sprinkling of wisecracks of course, which I hope not to find in this thread as the family might see it )

Thanks.

Last edited by Niranjan; 07.07.2009 at 22:02. Reason: Spelling
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Old 05.07.2009, 21:13
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Re: Lyme's disease support

Hello Niranjan,

This is my first post - I joined the forum when google alerts brought up your letter.

I worked for a while in Switzerland by the way, in 1972, a long time ago!

Anyway, the main reason I'm here is because I have been fighting Lyme disease for 5 years now, and it is such a tough struggle, we all need to help each other.

I am in a forum called EuroLyme which is all in English, with about 2000 members, most of whom are in the UK, but there are a fair number on there from France, Sweden, Norway, and the US.

It might be a good place to join, because they have a really big list of files and documents, and archives from 2002 of all the messages.
here's the link:

http://health.groups.yahoo.com/group/EuroLyme/

Ralph Stricker is one of the most prestigious doctors, your friend is on the right track with him.

There are good sites to look at in Canada ( www.canlyme.com/ )

and the US at www.lymenet.com/


In California state they are very organised and at the forefront
http://www.lymedisease.org/

Hope this helps.

I would like to hear from other Lyme disease sufferers, because the whole scene is very difficult, with most doctors following the wrong guidelines.
The best medical knowledge is at www.ilads.org/

Our NHS is not very good at testing and even when found positive, there is very limited treatment. Most people have to fund their own doctors and treatment although they have paid into the NHS all of their lives. Very wrong.

Bye for now,
all the best,
Denny
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Old 07.07.2009, 21:11
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Re: Lyme's disease support

Finding this forum has brought back so many lovely memories of Switzerland, mostly of Basel where I stayed for 6 months.
I was there as part of my degree "sandwich" doing training in the labs of Ciba-Geigy, as it was called then.

One thing about Switzerland I noticed even back then in the 70s was that it smelled so nice, with any polluting vehicles stopped on the spot if their exhausts were bad. I remember the smell of Linden blossom most of all.
And the aromatic pine needles up in the mountains.

It was going to be one of the places I would go back and visit, but I guess my life changed when I got bitten by the ticks, when I was on holiday in Scotland. I got more and more ill, with no idea that ticks would have given me such a bad fever a whole month later. All the blood tests for everything were normal, or occasionally a bit off on the white blood cells, so I got labelled as having post-viral fatigue syndrome, then ME or chronic fatigue syndrome as it's sometimes called, and now it's fibromyalgia as well.

Eventually I was too ill to work, my marriage broke down, but I bought my own little house and hoped I would somehow carry on working.
But everything went downhill. I was too young to have thought about private medical insurance or mortgage protection, so I ended up having to sell my house after a few years and I never worked again.

19 years later I heard through a friend of a relative that the blood tests are often negative for Lyme. So I had a couple of private tests and they were highly positive.
5 years after that I'm still on antibiotics and still in a lot of pain.
Sometimes we have to take 2 or 3 antibiotics at the same time, or just after each other, to kill the bugs when they come out of hiding.
The last round of antibiotics seems to be working a lot better than the previous ones at alst I might be on the way to recovery.

I believe it's because the anti-malarial drug Artesunate was added. The tick bites are known to pass on a malaria-like disease called babesia, as well as a bunch of other nasty organisms.

My appologies for going on about disease so much, but there are signs that the disease is spreading. Holland had 70,000 cases last year, Germany at least 80,000 - and while many of them will have been caught early, especially if a rash is noticed, loads of people don't have a rash and don't know they've been bitten.

At least there are more warnings about the dangers now.

All the best,
Denny
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Old 08.07.2009, 10:12
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Re: Lyme disease support

Hi Denny, thank you for joining English Forum to share your knowledge. I am sorry to hear how a tick bite affected your life and it's a reminder to be careful for us all who enjoy going to the forests. I hope your condition improves and if you ever make it to Switzerland again, you're most welcome to join us at a social event.
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Old 09.07.2009, 08:45
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Re: Lyme disease support

Hi Naranjan and Denny

Just wanted to say, I am so sorry to hear about your and your family's ongoing battles with Lyme Disease. I have a close friend who has this - also late stage diagnosis, also originally diagnosed as ME - and know it is a real challenge to live with and also very frustrating to get and make sense of impartial medical advice. My friend has also mentioned the yahoo website Denny cites.

Wishing you much strength!
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Old 14.07.2009, 21:55
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Re: Lyme disease support

Thanks for your kind thoughts, Olivita, Nathu and Niranjan!

I meant to post a few days ago but was having really bad symptoms.
One day, when I beat this illness, I intend to visit Switzerland and take a holiday there, as the first thing that I do.
Perhaps this might be in a year or two, but it will happen I know.

When I left in 1973, there was no Internet and even making a phone call was quite a big deal then so I gradually lost contact with the friends I made in Basel. I wonder where they are now?

If anyone would like any more info on Lyme borreliosis or just wants to compare notes, please feel free to PM me.

All the best,
Denny
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Old 23.05.2011, 22:13
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Re: Lyme disease support

Quote:
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When I left in 1973, there was no Internet and even making a phone call was quite a big deal then so I gradually lost contact with the friends I made in Basel. I wonder where they are now?
I bet there are still one or two in Basel. Name names and between us, we may be able to help find them.
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Old 23.05.2011, 22:32
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Re: Lyme disease support

I wouldn't hold your breath. This thread is two years old and Denny hasn't been around since 2009.
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Old 24.05.2011, 08:31
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Re: Lyme disease support

There is a book: "Borreliose natürlich heilen" by Wolf-Dieter Storl (in German) -about healing lymes disease with natural methods
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