Hello

Here you can socialize and have fun with other board members, and talk about all sorts of topics that are not related to Lyme disease.
Huck
Posts: 9
Joined: Sun 29 Jul 2007 12:30

Hello

Post by Huck » Sun 29 Jul 2007 12:35

Anybody here? :roll:

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: Hello

Post by Martian » Sun 29 Jul 2007 12:49

Huck wrote:Anybody here? :roll:
Yes, I am here. :)

When a discussion board has just started it needs a few pioneers to get it going. Then the rest will follow. 8-)

Acorn
Posts: 2
Joined: Sun 29 Jul 2007 19:18

Re: Hello

Post by Acorn » Sun 29 Jul 2007 19:20

I'm a pioneer. :D

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: Hello

Post by Martian » Tue 31 Jul 2007 14:20

I have seen several people log in the past days, but almost no new posts. I would be happy to answer some (medical) questions or respond to information.

X-member
Posts: 8349
Joined: Mon 30 Jul 2007 18:18

Re: Hello

Post by X-member » Wed 8 Aug 2007 2:37

Hello!

Since some of the info about me have ended up in the ”wrong topics” I give you the info again, as a presentation of me:

I possibly have had Lyme since summer 1997, I am on full time sick leave since fall 1999, and I am now on Lyme treatment prescribed by an endocrinologist, since our "Lyme experts" have denied me treatment due to a lot of stupid excuses. I give you two of the excuses: "Cystic form of Lyme does not exist" and "everybody have produced Lyme antibodies in their blood after 6-8 weeks" (I am immune deficient, and might not be able to produce any antibodies.)

My treatment for the moment is: 3g/day of Amoxicillin and it is prescribed for 2 months, but I already know that this is not enough.

Why the endocrinologist is treating me, is because I maybe have another secondary disease that could be caused by Lyme, SIADH:

http://www.emedicine.com/emerg/topic784.htm

“Some of the causes of SIADH are listed below:

• Central nervous system disease - Tumor, trauma, infection, cerebrovascular accident, subarachnoid hemorrhage, Guillain-Barré syndrome, delirium tremens, multiple sclerosis”

I have no thyroidproblem (what I know of).

Our Swedish Lyme community/association (you have to be a member to join the Swedish Lyme forum):

http://hem.bredband.net/tbepatientforeningen/index2.htm

The Norwegian Lyme forum/board (I take part in this too):

http://sunshine35446.yuku.com/forum/vie ... /borrelia/

And they also have an English part:

http://sunshine35446.yuku.com/forum/vie ... tags/lyme/

I think the Norwegian doctors (at least one of them) are better in Lyme treatment than the Swedish doctors!
In Norway they combine some medicine that could reach the cystic form of Lyme, with some other antibitotics, and the treatment is much longer in Norway compared to Sweden.

And I have got the result from a Swedish Western blot today (not showing bands), and my IgG was negative but my IgM was IND (indeterminate).

I give you some info about that:

http://www.healingwell.com/community/de ... 0&m=830547

"IND means that it was not enough to be positive, but also not enough to be negative. My LLMD says that you should treat the IND as a positive."

The problem is, I can’t afford to go to USA, and we totally lack LLMD:s in Sweden.

Carina from Sweden

User avatar
Yvonne
Posts: 2421
Joined: Fri 27 Jul 2007 16:02

Re: Hello

Post by Yvonne » Fri 10 Aug 2007 14:20

Carina wrote :

My treatment for the moment is: 3g/day of Amoxicillin and it is prescribed for 2 months
How long are you on this treatment now, do you already have a reaction on it ?
Why the endocrinologist is treating me, is because I maybe have another secondary disease that could be caused by Lyme, SIADH:
That is maybe possible.I have read that by SIADH the pituitary gland is involded and there are more lyme patient who have problems with that (my daughter to)

See also:

A woman who had SIADH caused by lyme borreliosis

http://www.lymenet.nl/forum/viewtopic.php?p=29343#29343

and about the pituitary gland:

http://www.lymenet.nl/forum/viewtopic.p ... sc&start=0

http://www.lymenet.nl/forum/viewtopic.php?p=21576#21576

Do you also have an another treatment for the SIADH besides ABX ?

Last week I have looked on the forums of Sweden.It's a pity that I can't read the language.
I saw that there were people of all of the world on it.

Yvonne
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

User avatar
Yvonne
Posts: 2421
Joined: Fri 27 Jul 2007 16:02

Re: Hello

Post by Yvonne » Fri 10 Aug 2007 14:56

Here are also a presentation of me :)

I'm Yvonne and I'm 45 years old.

I probable have lyme disease for about 28 years now.My husband, 3 children and my grandson have probable LD to.

We all have lyme symptoms and a positive test or specific bands on the WesternBlot.

For our testresults see:

http://www.lymenet.nl/forum/viewtopic.php?p=5075#5075

My treatment up to now:

10 months Doxycycline.Most of the time 200mg. 2 weeks 400mg. and a few weeks 300mg.

Now I'm on clarythromycin 1000 mg. for almost 3 months now and over 10 days I add hydroxychloroquine 400mg. to it.

Some symptoms are reduced

Yvonne
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

X-member
Posts: 8349
Joined: Mon 30 Jul 2007 18:18

Re: Hello

Post by X-member » Sun 19 Aug 2007 12:39

Hello again Yvonne!

We are almost the same age, I am 46.

You asked: ” Do you also have an another treatment for the SIADH besides ABX ?”

No I don’t need another treatment for my SIADH since antibiotics (thank good) still make this go away.

I have recently started a new treatment, and I am now on 300mg/Doxy a day, and 1400mg/Metronidazol 3 days/week. This is prescribed for 2 months (but could be longer), and I already notice that this treatment has effect!

This is a treatment given in Norway, and my Swedish Dr (the endocrinologist) thought we would try it. As you can see in another topic, our Swedish specialists only give 14 days treatment of 200mg Doxy/day.

Carina from Sweden

Ps! I do understand some Dutch, and I have read in the Dutch forum too. But I do not understand all of it. Ds.

cave76
Posts: 3182
Joined: Sun 12 Aug 2007 2:27

Re: Hello

Post by cave76 » Sun 19 Aug 2007 17:23

Hi,

I'm cave76 on the US Lymenet.org forum

I'm here because these TBI's are not confined to one continent or the other,
although the treatments and the doctors may be slightly different.

I obviously can't help with directing people to doctors in Europe.

But the science is the same. And the devastation wreaked by these disease is universal.

I asked a question about Lyme in Finland, but so far haven't received an answer.

I'm hoping this forum will gain numbers as more know about it.

I've had Lyme, Bartonella, anaplasmosis (been sick with) one or all of these for
over a decade.

I'm feeling much better but it's not over.

I've been on an abx (including IV Rocephin) for over 10 years.

wrotek
Posts: 1
Joined: Fri 2 Nov 2007 21:54

Re: Hello

Post by wrotek » Sun 4 Nov 2007 18:38

hello :mrgreen:

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