New Member

Posted July 7, 2006 · July 7, 2006

In a message dated 07/07/2006 11:24:06 GMT Daylight Time,

carole.gillespie@... writes:

behaviours. She has very bad poo and lots of

undigested food (sorry)

>>>Consider Houston enzymes

_www.houstonni.com_ (http://www.houstonni.com)

_www.enzymestuff.com_ (http://www.enzymestuff.com)

She won;t be gettign nutrient uptake if she isn't digesting food and or supps

Mandi in UK

Posted July 7, 2006 · July 7, 2006

In a message dated 07/07/2006 11:24:06 GMT Daylight Time,

carole.gillespie@... writes:

At present she is on the SCD and taking Brainchild vits and minerals,

has been quite emotional since starting these.

>>>That can be die off, as th eBCN will help balance the pH of the gut and

in doing so can upset some of those nasty critters hiding in there. Do ring

and speak to somebody at BCN is she doesn't settle down and they will help you

with dosing until it passes

Mandi in UK

Posted July 7, 2006 · July 7, 2006

Hi Carole,

Welcome to the list. Does your daughter have ANY mercury amalgam dental

fillings? If so, she needs to have them removed by a mercury-free dentist using

proper protocol before she can safely chelate. Have you done a DDI hair

elements test and applied countiing rules? What did it show?

S S

Dear friends

I am new here so please be patient with me!

Our daughter is 8 and is non verbal and has severe learning

difficulties. We tried a homeopathic approach with her for 2 and a

half years with few gains if any.

At present she is on the SCD and taking Brainchild vits and minerals,

has been quite emotional since starting these. She has been getting

PCA Rx for 10 months now as an attempt to remove heavy metals. The

PCA Rx calmed her down quite a bit and increased her attention span

from 0 to a little! She has just started Candex for yeast as she had a

spotty bottom and giggly behaviours. She has very bad poo and lots of

undigested food (sorry)

After speaking to friends on other boards I am very keen to change to

something else for chelation. Any advice - and my other worry - how

do you know when to add a supplement, tackle yeast etc when chelating?

I feel a bit like when I started gfcf all those years ago - clueless

and scared!!!

Any advice gratefully received

best wishes

Carole

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Posted July 7, 2006 · July 7, 2006

Hi and Mandi

Thanks very much for your help. I'm happy to go with the Brainchild just now,

she is

settling down and we are getting some brilliant hugs and " real " smiles - eye

contact and

everything.

Our dd has no mercury fillings and am about to get a hair test done - where is

the best

place to send this in the UK?

Thanks again

Carole

>

> Hi Carole,

> Welcome to the list. Does your daughter have ANY mercury amalgam dental

fillings? If

so, she needs to have them removed by a mercury-free dentist using proper

protocol

before she can safely chelate. Have you done a DDI hair elements test and

applied

countiing rules? What did it show?

> S S

>

> Dear friends

>

> I am new here so please be patient with me!

>

> Our daughter is 8 and is non verbal and has severe learning

> difficulties. We tried a homeopathic approach with her for 2 and a

> half years with few gains if any.

>

> At present she is on the SCD and taking Brainchild vits and minerals,

> has been quite emotional since starting these. She has been getting

> PCA Rx for 10 months now as an attempt to remove heavy metals. The

> PCA Rx calmed her down quite a bit and increased her attention span

> from 0 to a little! She has just started Candex for yeast as she had a

> spotty bottom and giggly behaviours. She has very bad poo and lots of

> undigested food (sorry)

>

> After speaking to friends on other boards I am very keen to change to

> something else for chelation. Any advice - and my other worry - how

> do you know when to add a supplement, tackle yeast etc when chelating?

> I feel a bit like when I started gfcf all those years ago - clueless

> and scared!!!

>

> Any advice gratefully received

>

> best wishes

>

> Carole

>

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> The most personalized portal on the Web!

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Posted July 17, 2006 · July 17, 2006

Welcome Helen,

One thing we have all found to be true with this arthritis thing is that we

know our body. If you feel you have PA you can learn a lot about it here.

Janet in Ca

Posted July 19, 2006 · July 19, 2006

Welcome. Unfortunately, PA is not something that you can see. I too

sometimes feel bad that others around me are doing things and they

just don't get the fact that I can't. I'm learning my limitations

and most importantly learning to say no without feeling guilt or

trying to be macho about it. You can't help the fact that you feel

like you do so don't feel bad about it- these are the cards your

dealt, make the best of it and don't feel bad to tell someone how you

feel. I also am also tired and by the end of the workday, I can

barely stande to cook dinner. I find a little nap for 1/2 hour helps

me get through the rest of the afternoon. Other medications, as

Kathy said, may make you feel a lot better. I take Humira and find I

can do a lot more that I could on other meds. Good Luck!

>

> You are all so knowledgable, kind and caring. I feel like I know

> many of you after reading the posts. I don't really know how to deal

> with this disease. Since it is so " internal " with few outward

> signs...I am starting to feel like a hypochondriac or just a big

> complainer.

>

> I was diagnosed with " arthritis " when I was 19..but last year, after

> getting a severe eye inflammation (Iritis and Scleritis) they looked

> further and found it to be PA. I have osteoporosis in hip and

> spine, get bursitis regularly and have 2 heart murmurs...all

> attributed to PA. I am currently on Celebrex to help with the

> bursitis that continues to cause swelling and joint pain. I have no

> cartilage in my left hip... all PA caused.... but the thing that

> makes me saddest is how tired I feel, when in the middle of " an

> episode " of inflammation. I have lost my " perky " . Is this how

> everyone feels? Are there better or worse medicines out there? I

> am taking high doses of Omega 3-6-9 and Glucosamin Chondroitin

> Sulfate along with the Celebrex.

>

> [Editor's Note: I think a lot of us have lost a lot of our

perkiness due to the disease but that's probably just as well - perky

people can be annoying, LOL. There are MANY additional medications

out there. Celebrex is relatively mild in comparison to medications

such as methotrexate, Enbrel, Remicade and Humira. Speak to your

rheumatologist about these (if you are not under the care of a

rheumy, get thee to one immediately). This last group of medications

has the ability to slow down the progression of the disease while

Celebrex does not although it can help with the inflammation the

disease causes. The Omega 3-6-9 and glucosamine chondroitin are

helpful for your osteoarthritis but will not do anything to help your

PA. Many of the members here are on some of the drugs I mentioned

and a number of us have seen improvement ranging from slight to life-

changing. Kathy F.]

>

Posted July 19, 2006 · July 19, 2006

Hey Cool mom,

Welcome.

Kathy, you crack me up. This was the first laugh I've had so far today.

Needless to say, I was never one of the " perky " .

Pay close attention to what Kathy F. advises. She is very knowledgeable

about this disease. My rheumy started me on methotrexate on my first visit to

him, and am still on it and my lifestyle has improved quite a lot since

then.(4 years ago) But I still suffer from time to time. Everyone reacts

differently to each medication, so Good luck and find a good Rheumy.

Janet in Ca

Posted July 20, 2006 · July 20, 2006

Hey Mom Previously Known as Perky! You could be in our band just

because you now have funky name. Welcome to the group. I have -

itis and am getting behind in answering and responding lately. I

started Enbrel a few months ago and it pulled me out of a major

flare that had me walking like a Gorilla with a corn cob stuck up

his butt. The Enbrel now has me working...selling cars...or

attempting to sell cars. I started last week and have not sold one

yet. PA has made me determined and has shown me parts of me I did

not know before so I'm not giving up. And I DID get some of my perky

back with the Enbrel too...don't let go of hope. Hope is key to

survival. Welcome to the group....it IS a caring place and has been

a lifesaver for me. -Betz---

[Editor's Note: Don't you give up on the car job either. This is a bad time in

car sales. People are waiting for the huge inventory clearance sales or they

are waiting for the new model year to be on the lot. Even with used cars, once

the 2007s are out, a 1999 becomes a year older and theoretically cheaper

(although the price of a used car doesn't drop so it's all in people's heads,

LOL). Hang in there, Betz. Kathy F.]

In

, " azcoolmom " <azcoolmom@...>

wrote:

>

> You are all so knowledgable, kind and caring. I feel like I know

> many of you after reading the posts. I don't really know how to

deal

> with this disease. Since it is so " internal " with few outward

> signs...I am starting to feel like a hypochondriac or just a big

> complainer.

>

> I was diagnosed with " arthritis " when I was 19..but last year,

after

> getting a severe eye inflammation (Iritis and Scleritis) they

looked

> further and found it to be PA. I have osteoporosis in hip and

> spine, get bursitis regularly and have 2 heart murmurs...all

> attributed to PA. I am currently on Celebrex to help with the

> bursitis that continues to cause swelling and joint pain. I have

no

> cartilage in my left hip... all PA caused.... but the thing that

> makes me saddest is how tired I feel, when in the middle of " an

> episode " of inflammation. I have lost my " perky " . Is this how

> everyone feels? Are there better or worse medicines out there? I

> am taking high doses of Omega 3-6-9 and Glucosamin Chondroitin

> Sulfate along with the Celebrex.

>

> [Editor's Note: I think a lot of us have lost a lot of our

perkiness due to the disease but that's probably just as well -

perky people can be annoying, LOL. There are MANY additional

medications out there. Celebrex is relatively mild in comparison to

medications such as methotrexate, Enbrel, Remicade and Humira.

Speak to your rheumatologist about these (if you are not under the

care of a rheumy, get thee to one immediately). This last group of

medications has the ability to slow down the progression of the

disease while Celebrex does not although it can help with the

inflammation the disease causes. The Omega 3-6-9 and glucosamine

chondroitin are helpful for your osteoarthritis but will not do

anything to help your PA. Many of the members here are on some of

the drugs I mentioned and a number of us have seen improvement

ranging from slight to life-changing. Kathy F.]

>

Posted July 26, 2006 · July 26, 2006

> I joined this group for support because I feel that the light at the

> end of that tunnel is a train. And sometimes that the train has

> already been running over me for, oh, 4 years or so.

Are you me? You pretty much just expressed what I'm feeling right

now. If I didn't have a sense of humor I'd be a puddle on the floor.

Welcome to the group. I usually lurk but wanted to say hi.

Posted July 29, 2006 · July 29, 2006

Orthomerica makes the STARband and many of us in the group have them -

http://www.starbandkids.com/. My son has been in his for three

months now and we have been very happy with the results so far.

Don't ever doubt that you are making the right choice to band your

son!

Molly

California

Nicolas, 9.5 months, tort & plagio, STARband 4/25/06

>

> Hello,

> My name is . My son, Noah, born 9 weeks early, has developed

> plagio due to tort. I actually self diagnosed him because My Ped.

> didnt catch it at all even though I pointed it out to her early on.

> That has been a very frusturating experience. She along with two

other

> Peds have never heard of helmets and think I'm crazy (and probably

a

> bad parent) for seeking tx. I live in Colorado and am wondering if

> these folks are just behind the times or what. I have found a

> Orthosist who uses ortho america helmets. Has anyone had any

> experience with this helmet. My son is 7 mos. old but really more

like

> 5 mos due to prematurity. I, like so many others, am struggling

with

> the decision to treat or not due to ped's disapproval.

> Thanks!

>

Posted July 29, 2006 · July 29, 2006

Hi , Sorry to here you are experiencing some frustration. Where do you live in CO? We are near Longmont. I applaud you for asking your Dr. for treatment for Noah. My son Cole is 6 1/2 months. His tort was diagnosed at 7 weeks, but his plagio is sort of unspoken. I point it out to his Dr. but it has not been "diagnosed." We have an appointment at Children's in Denver next week. I am skeptical that they will offer us any help. We plan on asking our pediatrician for a helmet too....but it seems as though most of the ladies from CO who post on this site have had to push for the script. I have to say that a good doc will not think of you or I or anyone else as a bad parent when we are looking out for the best interest of our children. I am a school psychologist so I work with kids, parents and teachers all the time. My basic philosophy

is that most parents have good intentions even if their actions are not very effective. Most of the time we are trying to achieve the same goals, even if our methods are completely opposite. So.....in the most frustrating meetings or bad situations I remind myself that parents who are good parents advocate for their kids. Those are the parents who get angry sometimes but care all of the time mom to Cole tort/plagiolisade72 <lisade72@...> wrote: Hello,My name is . My son, Noah, born 9 weeks early, has developed plagio due to tort. I actually self diagnosed him because My Ped. didnt catch it at all even though I pointed it out to her early on. That has been a very frusturating experience. She along with two other Peds have never heard of helmets and think I'm crazy (and probably a bad parent) for seeking tx. I live in Colorado and am wondering if these folks are just behind the times or what. I have found a Orthosist who uses ortho america helmets. Has anyone had any experience with this helmet. My son is 7 mos. old but really more like 5 mos due to prematurity. I, like so many others, am struggling with the decision to treat or not due to ped's disapproval.Thanks!

Posted July 29, 2006 · July 29, 2006

Hello

Welcome to the group. If I were you I would start with calling the

peds in your area and finding out who is band friendly. Fire your

ped now and get someone that has a bit more knowledge about plagio.

My daughter was 5 wks early and we had a ton of therapy for her and

the helmet and then some, so I know that you must be doing even more

with your baby being 9wks premature. Is Noah ok, or does he have

lasting complications? I hope not.

Please seek a consult and find a ped that will write you a script.

Make sure the ortho knows what he/she is doing first though. You

might want to check out where the next CT is as well.

Good luck

Sandy Willow's Mom

>

> Hello,

> My name is . My son, Noah, born 9 weeks early, has developed

> plagio due to tort. I actually self diagnosed him because My Ped.

> didnt catch it at all even though I pointed it out to her early

on.

> That has been a very frusturating experience. She along with two

other

> Peds have never heard of helmets and think I'm crazy (and probably

a

> bad parent) for seeking tx. I live in Colorado and am wondering if

> these folks are just behind the times or what. I have found a

> Orthosist who uses ortho america helmets. Has anyone had any

> experience with this helmet. My son is 7 mos. old but really more

like

> 5 mos due to prematurity. I, like so many others, am struggling

with

> the decision to treat or not due to ped's disapproval.

> Thanks!

>

Posted July 30, 2006 · July 30, 2006

,

Good for you for using your " mother's instinct! " Someone said to me when I

was starting this journey that you are your child's ONLY advocate so you do

what you need to do!

I also self diagnosed and asked my pediatrician if he thought she would need

a helmet. He laughed and told me that it would round out on its own. I went

to a family friend who happens to be a ped. for a second opinion and he said

I definitely needed a helmet because it would never round out on its own.

After I met with our OT she said she agreed and Madelyn's brachy would have

just gotten worse and worse because it was so bad. Madelyn was 4 weeks early

which also caused her brachy, both our new ped and the OT said that

everything in her head was not where it should be because the flatness just

kept pushing and pushing.

Sorry for all the info, my point is that you know when something doesn't

seem right so you need to go with your gut. Get a second opinion, even if

you need to travel to get it. I joke that the hour I drive once a week is

worth it because it is saving me on therapy bills when Madelyn is a teenage

girl complain about her flat head

>From: " lisade72 " <lisade72@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: New Member

>Date: Sat, 29 Jul 2006 05:28:04 -0000

>

>Hello,

>My name is . My son, Noah, born 9 weeks early, has developed

>plagio due to tort. I actually self diagnosed him because My Ped.

>didnt catch it at all even though I pointed it out to her early on.

>That has been a very frusturating experience. She along with two other

>Peds have never heard of helmets and think I'm crazy (and probably a

>bad parent) for seeking tx. I live in Colorado and am wondering if

>these folks are just behind the times or what. I have found a

>Orthosist who uses ortho america helmets. Has anyone had any

>experience with this helmet. My son is 7 mos. old but really more like

>5 mos due to prematurity. I, like so many others, am struggling with

>the decision to treat or not due to ped's disapproval.

>Thanks!

>

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Posted August 15, 2006 · August 15, 2006

In a message dated 16/07/2006 13:23:10 GMT Daylight Time,

helen01louise01@... writes:

hello all, just want to introduce myself. my name is helen, i have

had psoriasis for nearly 8 years now, and have been diagnosed with

arthritis for over 5 years, at the moment they have not told me that

the two are linked, but i'm thinking thery are.

Hi Helen,

Welcome to the group. I'm glad you found us but sorry that you had to.

Chances are you will be right about the link. What meds do they have you on? I

hope

they are trying to help you even if they have not decided officially what kind

of A it is.

Take care,

Posted August 15, 2006 · August 15, 2006

hello all, just want to introduce myself. my name is helen, i have

had psoriasis for nearly 8 years now, and have been diagnosed with

arthritis for over 5 years, at the moment they have not told me that

the two are linked, but i'm thinking thery are.

Sorry But I don't know if I Welcomed you or not, if not

WELCOME TO THE GROUP HELEN...

Love and Peace Always

Shaun and Barb

Posted August 15, 2006 · August 15, 2006

In a message dated 19/07/2006 13:04:06 GMT Daylight Time,

azcoolmom@... writes:

I was diagnosed with " arthritis " when I was 19..but last year, after

getting a severe eye inflammation (Iritis and Scleritis) they looked

further and found it to be PA.

Hi azcoolmom,

Welcome to the group. I'm sorry that you have so much going on with this but

hopefully the fact that you will now be in touch with people who have similar

problems will help you. Maybe you could ask your Rheumy (Do you have one?)

about the drugs Kathy mentioned.

Good luck,

Posted August 17, 2006 · August 17, 2006

> Actually I just received my prescription and hope that someone can

> give me a source pharmacy for LDN 3.0 mg in San Francisco, CA.The

> lowest dose I can find so far is 50 mg.

,

Many of us prefer to get the drug in 50 mg formulation as our

insurance covers it that way and it is widely available at any local

pharmacy. Those of us who do it this way mix a 50mg pill in 50 ml of

water and take 1.5 ml, 3 ml, or 4.5 ml per night to get 1.5 mg, 3.0

mg, or 4.5 mg of naltrexone.

As far as LDN goes, my experience has been good. MRI results confirm

what I felt long before seeing those results, that disease activity in

my brain has essentially stopped. I feel great physically and am

filled with hope.

Good luck obtaining the drug. LDN can be a miracle.

Posted August 17, 2006 · August 17, 2006

you need a compounding pharmacy and you really need to find a pharmacy that has

been involved in ldn and knows what they are doing what the deal is and what the

doses are

you can go to www.low dose naltrexone.org and find the approved pharmacies and

call them and get prices and see who you like.

you can have it mailed to your door and have a pharmacist at the other end that

actually undersstands what your going through and will help you.

cyndi

[low dose naltrexone] Re: New Member

>

>> Actually I just received my prescription and hope that someone can

>> give me a source pharmacy for LDN 3.0 mg in San Francisco, CA.The

>> lowest dose I can find so far is 50 mg.

>

>,

>

>Many of us prefer to get the drug in 50 mg formulation as our

>insurance covers it that way and it is widely available at any local

>pharmacy. Those of us who do it this way mix a 50mg pill in 50 ml of

>water and take 1.5 ml, 3 ml, or 4.5 ml per night to get 1.5 mg, 3.0

>mg, or 4.5 mg of naltrexone.

>

>As far as LDN goes, my experience has been good. MRI results confirm

>what I felt long before seeing those results, that disease activity in

>my brain has essentially stopped. I feel great physically and am

>filled with hope.

>

>Good luck obtaining the drug. LDN can be a miracle.

>

Posted August 17, 2006 · August 17, 2006

>

> Hello everyone:

> I'm excited to become a member of this group and hear how people are

> doing on LDN. I will be starting LDN within a week and am looking

> forward to good results, which I will gladly report.

>

> Actually I just received my prescription and hope that someone can

> give me a source pharmacy for LDN 3.0 mg in San Francisco, CA.The

> lowest dose I can find so far is 50 mg.

>

> Thanks for your help

>

======

Go to the LDN website and on the site is a list of reliable LDN compounding

pharmacies, choose one and call that pharmacy and set up payment and shipping of

your capsules. Do not let any compounding pharmacy use any calcium

carbonate(CC) as a filler in your capsules as CC can cause LDN to release slow

and LDN must release fast to work. The best fillers are...Lactose, non-dairy

non-refrigerate Acidophilus, Gelatin, Avicel(cellulose)if you are allergic to

Avicel symptoms can be headache, nausea, vomiting. If you are lactose

intolerant choose one of the other fillers. To get LDN prepared properly you

must use a compounding pharmacy. Read the compounding pharmacy section on the

LDN website about how some compounding pharmacies are not reliable in mixing LDN

correctly. Learn the LDN website like the back of your hand and you'll have a

greater understanding about LDN.

LDN website

http://www.ldninfo.org

Posted August 17, 2006 · August 17, 2006

Hello everyone:I'm excited to become a member of this group and hear how people are doing on LDN. I will be starting LDN within a week and am looking forward to good results, which I will gladly report.Actually I just received my prescription and hope that someone can give me a source pharmacy for LDN 3.0 mg in San Francisco, CA.The lowest dose I can find so far is 50 mg.Thanks for your help

Posted August 25, 2006 · August 25, 2006

My son did not do well in Montessori. There was not enough structure for him.

---- UmmAbdAllah <eldohirifamily@...> wrote:

> Hi to all.

>

> I am going through the process of having my almost 5 year old son

> evaluated. Asperger's is suspected but we still have final details to

> finish before the diagnosis is made.

>

> We are looking into schools for my son. I was wondering if anyone has

> any info about Montessori Schools and also if anyone has tried putting

> their Apserger's children in this type of setting. It caught my eye

> becsause it is all hands on learning and also they progress at an

> individual level. Any input would be greatly appreciated.

>

> Thanks

>

Posted August 27, 2006 · August 27, 2006

Montessori schools can vary greatly as the term " montessori " is not a regulated

one. My Aspie son has been in a Montessori school since he was 3. He is now 9,

starting his 4th grade year there. It has been a great fit for him, but part of

that was his teachers' willingness to adapt to him, coupled with the structured

materials, peaceful environment and facilitated socialization. I know it

doesn't work for every child. But, if you can visualize your son in the

environment, that may be the best predictor. I would also check to see that the

school is experienced with spectrum kids. There's actually a Montessori school

in Dallas that is specifically geared to kids with dyslexia and ADHD, but also

inclusive of spectrum disorders. It's called the Shelton School, I believe.

Leah

mom to 9yr AS son and 8 yr NT daughter

-------------- Original message ----------------------

From: <acpatton1@...>

> My son did not do well in Montessori. There was not enough structure for him.

> ---- UmmAbdAllah <eldohirifamily@...> wrote:

> > Hi to all.

> >

> > I am going through the process of having my almost 5 year old son

> > evaluated. Asperger's is suspected but we still have final details to

> > finish before the diagnosis is made.

> >

> > We are looking into schools for my son. I was wondering if anyone has

> > any info about Montessori Schools and also if anyone has tried putting

> > their Apserger's children in this type of setting. It caught my eye

> > becsause it is all hands on learning and also they progress at an

> > individual level. Any input would be greatly appreciated.

> >

> > Thanks

> >

>

Posted August 27, 2006 · August 27, 2006

Welcome Selma,

Do you know we have a city in US named Selma? It is somewhat well-

known, being the site of a famous civil rights march in the 1960's.

(in Alabama)

Anyway...since you're from Switzerland, do you know what is the

general state of Lyme there?

As far as general awareness, as far as how prevalent it is?

I'm curious.

regards,

ellen

-- In , " selmanaka " <hardynaka@...>

wrote:

>

> I see a lot of known names here from other forums!

> I'm glad to have entered the forum then!

>

> I'm Selma, I live in Switzerland, been sick since June 2005 with

> lyme, babesia and bartonella.

>

> I'm a fan of Buhner's herbs, they helped me tons. I just feel one

has

> to add a lot of cleansing and metal detox herbs to his protocols

to

> become almost perfect!! And the amount he suggests are way too

high

> for me (but I'm a thin person, and very sensitive to herbs/

> homeopathics).

>

> I'm on his protocol since about December (started slowly!). Now

I'm

> on a very reduced protocol and still improving. Wishing to let go

> andrographis one day, but still haven't done it for more than a

> couple of days (and got my symptoms back...).

>

> My 2 year old daughter has been bitten by 3 ticks this summer, I

had

> given her antibiotics, but I start to regret having done that. It

> destroyed her intestines. She's ART tested positive for borrelia,

> bartonela, ehrlichia and rikettsia.

>

> I've never taken Buhner's herbs in tincture, but will start now (I

> mean, my daughter will) as she can't ingest capsules and a few

herbs

> taste too horrible for a 2 year old. Next time she's bitten, I'll

do

> then differently.

>

> Would like to share my own experience with the herbs, and to get

> information about his herbs with young children.

>

> I find Buhner so nice, I don't know how he has time to answer

> questions of the hundreds of people who write him. So this forum

may

> help his email box to be less full!!

>

> glad to have joined the forum!

> Selma

>

Posted August 27, 2006 · August 27, 2006

HI Ellen,

Thanks for the welcome.

Yes I knew there was a city called Selma in the US, but had no idea

it was soooo important!!! Lol! Good to know.

Do you mean, the situation of infections or of treatment in

Switzerland? Well, both are pretty bad. I think the worst country for

intections is Croatia, second is then most of Western European

countries and many other Eastern countries including northern

countries, with 'red' area pockets here and there (where I live is

one of the worst areas).

I think safer contries are Italy and Greece, but borrelia is also

there in lower numbers.

Some articles said the rate of infections here are worse than the US.

But these are just my memories of what I've been reading since I got

sick.

Doctors here are very misinformed. Patients are left with minimum

treatment and said 'cured', or no treatment at all (my case, Western

blot positive, considered 'cured' BEFORE symtpoms really appeared,

with 2 week of doxy, 100mg). When symptoms appeared after treatment,

they say: " you have something else, but this is not lyme " . Ot this

is 'post lyme syndrome'.

" Babesiosis? Impossible you have it. Only people with no spleen catch

it. "

GPs tell me though that the number of people coming with erithema

migrans increase every year, and that's clear.

Almost no one tests for co-infections. I went to tropical disease

specialists, they tested me for some, everything came negative of

course. Non sensitive tests.

Well, I'm glad I read Buhner's book in time (when I still had energy

to do so). Now I'm doing very fine, going back to life again!

Selma

>

> Welcome Selma,

> Do you know we have a city in US named Selma? It is somewhat well-

> known, being the site of a famous civil rights march in the 1960's.

> (in Alabama)

> Anyway...since you're from Switzerland, do you know what is the

> general state of Lyme there?

> As far as general awareness, as far as how prevalent it is?

>

> I'm curious.

>

> regards,

> ellen

>

Posted August 28, 2006 · August 28, 2006

Hi Selma,

jeesh! Your info (below) sounds so depressingly familiar!

At least things are slowly improving, due to the super efforts of

individuals- who fight their doctor while they fight the disease-

and to the efforts of those doctors and scientists who put their

conscience before the Almighty Dollar and 'Prestige' and being

popular. If we left it to the medical establishment, forget it.

ellen

(who actually visited Selma, AL. At least I won't forget your name!)

>

> HI Ellen,

>

> Thanks for the welcome.

> Yes I knew there was a city called Selma in the US, but had no

idea

> it was soooo important!!! Lol! Good to know.

>

> Do you mean, the situation of infections or of treatment in

> Switzerland? Well, both are pretty bad. I think the worst country

for

> intections is Croatia, second is then most of Western European

> countries and many other Eastern countries including northern

> countries, with 'red' area pockets here and there (where I live is

> one of the worst areas).

>

> I think safer contries are Italy and Greece, but borrelia is also

> there in lower numbers.

>

> Some articles said the rate of infections here are worse than the

US.

> But these are just my memories of what I've been reading since I

got

> sick.

>

> Doctors here are very misinformed. Patients are left with minimum

> treatment and said 'cured', or no treatment at all (my case,

Western

> blot positive, considered 'cured' BEFORE symtpoms really appeared,

> with 2 week of doxy, 100mg). When symptoms appeared after

treatment,

> they say: " you have something else, but this is not lyme " . Ot this

> is 'post lyme syndrome'.

>

> " Babesiosis? Impossible you have it. Only people with no spleen

catch

> it. "

>

> GPs tell me though that the number of people coming with erithema

> migrans increase every year, and that's clear.

>

> Almost no one tests for co-infections. I went to tropical disease

> specialists, they tested me for some, everything came negative of

> course. Non sensitive tests.

>

> Well, I'm glad I read Buhner's book in time (when I still had

energy

> to do so). Now I'm doing very fine, going back to life again!

>

> Selma

>

> >

> > Welcome Selma,

> > Do you know we have a city in US named Selma? It is somewhat

well-

> > known, being the site of a famous civil rights march in the

1960's.

> > (in Alabama)

> > Anyway...since you're from Switzerland, do you know what is the

> > general state of Lyme there?

> > As far as general awareness, as far as how prevalent it is?

> >

> > I'm curious.

> >

> > regards,

> > ellen

> >

>

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