(no subject)

[Guest guest]

Marge, How would you say that Alinia compares with Tindamax, a 2nd

generation of Flagyl? My insurance won't cover Alinia & it's PROHIBITIVELY

expensive. Patrice

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Elfmarge@...

Sent: Saturday, October 07, 2006 9:25 AM

rheumatic

Subject: rheumatic Re: (no subject)

Cookie,

Dr S is experienmenting with Alinia an ABX from Europe and it has the

properties of flagyl..no side effects. Can be pricey but it is covered by

Insurance

and available here.He as wellas Vanderbuilt believe these issues are gut

related..thats why this is an important key he said. Dose is 500 mg 2x aday

for 2

weeks a month or 1 a day .

We have posted some info on the other site.( www.rheumaticsupport.net)

He should be back again soon as we all want to hear more about the new

findings he is getting.

Marge

Marge

[Guest guest]

Wow Marge this sounds so great. I did the whole Flagyl routine and had BAD

side effects. I tried to continue but could not. I sent this to my doc and a

few others who do not belong to our group.

Thank you sooo much

cooky

Dr S is experienmenting with Alinia an ABX from Europe and it has the

properties of flagyl..no side effects. Can be pricey but it is covered by

Insurance

and available here.He as wellas Vanderbuilt believe these issues are gut

related..thats why this is an important key he said. Dose is 500 mg 2x aday

for 2

weeks a month or 1 a day .

We have posted some info on the other site.( www.rheumaticsupport.net)

He should be back again soon as we all want to hear more about the new

findings he is getting.

Marge

[Guest guest]

>

> I have RRMS and have

been on 4.5mg of LDN for

3 years with great

results. 10

> weeks ago I had an

operation and had to come

of my LDN as I was

taking

> morphine and later

codeine. The result was

devastating and I was

back in my

> wheelchair. I have now

been back on LDN for 7

weeks and have improved

markedly.

> However, I can only

walk, with difficulty, a

few steps and have still

to use my

> chair outside. Could

anyone with a similar

experience tell me if I

will get

> back to where I was

before my operation?

>

> Pat

>

==========

You may need physical

therapy. Were you on any

antibiotics during this

time? Give this some

time, anesthesia causes

havock with an MS

person. Try to find

someone in your area who

does scalp acupuncture,

that could possibly help

also. Pool therapy would

be great to do when the

weather turns warm again.

[Guest guest]

Artie,

Thank you for your quick reply. I'm going to keep your e-mail as I do

with all of them from your group. I hope my neurologist won't give me

a hard time after a month if I ask if he could increase the strength

Ann Fredericks

annf02@....AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Luigi,

Thank you for that e-mail I sent in this morning. Another one I'm going to save, it sounds a little risky. Is that done? AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

>

> Annf02: Good Morning I was given a perscription for LDN wed.,

only 3mg.

> Do you think this is strong enough because my MS is very

progressive. Meaning

> the symptoms seem to be getting stronger at a rapid rate. I value

your opinion.

> ann02@...

>

3.0mgs-4.5mgs of LDN is the recommended dosage.

I've had MS for 18 years and in March 2005 I started out with 3.0mgs

and after one month went to 4.5mgs, which is the optimal adult

dosage, and have been there ever since. I also take 20mgs of 4-AP and

1000mgs of DLPA daily, follow a strict diet and take a bunch of

vitamins and other supplements. Stretching and light exercise is

important, too.

Artie

--

[Guest guest]

Hi Ann;

Some of your pills can easily be dissolved in water and then you can increase your dosage to 4.5mg after your body has adapted to the naltrexone. When dissolving make sure mg = ml. Flu like symptoms and headaches are common if you try to increase too quickly. It seems that each person has to find their own "optimal" dosage with 3.0mg/day a minimum and 4.5mg/day recommended.

You have the best medicine now so good luck!

Luigi

[low dose naltrexone] (no subject)

Annf02: Good Morning I was given a perscription for LDN wed., only 3mg. Do you think this is strong enough because my MS is very progressive. Meaning the symptoms seem to be getting stronger at a rapid rate. I value your opinion. ann02@...

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. *************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.446 / Virus Database: 268.18.7/710 - Release Date: 3/4/2007 1:58 PM

[Guest guest]

I was on 3.0 for 300 days before trying 4.5 for 38; I found 3.0 better for me and dropped back. 6 mos later I tried 4.5 again for only 12 days, realized the same affects and dropped back to 3.0

See how 3.0 works for you, then deal with your doc to try 4.5 at some point.

I got my fill for 4.5 in 1.5 mg capsules so I could do 3.0 or 4.5, and if doing 3.0 it lasts 3 months instead of 2 when I got 60 day refills.

Good luck to ya... 3.0 should be ok... 4.5 may be better or worse, but 3.0 should be ok

[low dose naltrexone] Re: (no subject)

>> Annf02: Good Morning I was given a perscription for LDN wed., only 3mg. > Do you think this is strong enough because my MS is very progressive. Meaning > the symptoms seem to be getting stronger at a rapid rate. I value your opinion. > ann02@...>3.0mgs-4.5mgs of LDN is the recommended dosage.I've had MS for 18 years and in March 2005 I started out with 3.0mgs and after one month went to 4.5mgs, which is the optimal adult dosage, and have been there ever since. I also take 20mgs of 4-AP and 1000mgs of DLPA daily, follow a strict diet and take a bunch of vitamins and other supplements. Stretching and light exercise is important, too.Artie--

[Guest guest]

My son's naltrexone was prescribed in 50mg pills. He mixes one with 50 ml of water and keeps it in the fridge. I understand others on this site have done the same.

luigi

Re: [low dose naltrexone] (no subject)

Luigi,

Thank you for that e-mail I sent in this morning. Another one I'm going to save, it sounds a little risky. Is that done?

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. **************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.446 / Virus Database: 268.18.7/710 - Release Date: 3/4/2007 1:58 PM

[Guest guest]

Have been doing 50 mg pill in 50 ml of water for nearly 2 years now. Much easier to adjust what I take, if I care to. Seems to work fine for a number of things, so see no need to change to something else. To me it is no big deal and my wife franky perfers it that way as she hates pills (has a hard time swallowing them.)

Bruce Guilmette, PhD

Author: THERE'S MORE TO LIFE THAN JUST LIVING, A Personal Story About Cancer Survival

Survive Cancer Foundation, Inc.

http://survivecancerfoundation.org

Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 (NIV)

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of LuigiSent: Sunday, March 04, 2007 4:38 PMlow dose naltrexone Subject: Re: [low dose naltrexone] (no subject)

My son's naltrexone was prescribed in 50mg pills. He mixes one with 50 ml of water and keeps it in the fridge. I understand others on this site have done the same.

luigi

Re: [low dose naltrexone] (no subject)

Luigi,

Thank you for that e-mail I sent in this morning. Another one I'm going to save, it sounds a little risky. Is that done?

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. **************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.446 / Virus Database: 268.18.7/710 - Release Date: 3/4/2007 1:58 PM

[Guest guest]

> >

> > Please remove me from your list ldn

> > myjimmyleeluv@

> >

> >

> > **************************************

> > AOL now offers

> > free email to everyone. Find out more about what's free from AOL

at

> > http://www.aol.com.

> >

>

> To unsubscribe, send an email to:

>

> low dose naltrexone/join

>

> or go here:

>

> low dose naltrexone-unsubscribe

>

Sorry...got it reversed.

To unsubscribe, send an email to:

low dose naltrexone-unsubscribe

or go here:

low dose naltrexone/join

[Guest guest]

-----Original Message-----From: Plagiocephaly-owner [mailto:Plagiocephaly-owner ] On Behalf Of LLCOLER@...Sent: 16 April 2007 12:20 AMplagiocephaly-owner Subject: (no subject)HI - my name is and my baby daughter has just been diagnosed with plagiocephaly - right side flat and I think she has torticullis. We are going to see a cranial specialist - Dr. Menard at Kaiser in Santa Clara CA - he works woth the Center for INdep. Rehab. Services in Palo Alto - they use Starband. My questions are as follows;1. I have read about potential brain damage and/or dev. delays and I am terrified - what do you know?2. Any ideas about the Dr or center?3. Will her facial asymmetry correct?4. Will her ear displacement correct?Thank you,**************************************See what's free at http://www.aol.com.

[Guest guest]

Hi -

My son saw Dr. Menard at Kaiser and we just loved him! We had actually seen a dr. in Richmond and went to Dr. Menard for a second opinion. Dr. Menard was great, much better than the first one that we saw. He took measurements of Nicolas' head and reviewed the STARscan report that I had taken a few weeks earlier. He said that Nicolas' measurements were borderline mild/moderate but that given his torticollis he recommended that we go ahead with getting the STARband for him. I know someone else who saw the same doctor for an evaluation and in her case he recommended not to get the band. (I think part of the reason why I wanted to see this particular doctor was that I was hoping he would say that my son didn't need a band either) This makes me feel confident that he doesn't automatically recommend banding every child with plagio. We ended up getting our STARband from CIRS in Oakland (we live in Marin so Oakland was more convenient than Palo Alto). We had a great experience at the Oakland and office and I've heard great things about the Palo Alto office. You'll be in good hands there if you decide to get a band.

Are you concerned about brain damage or developmental delays if you get the band? The opposite is actually true, you're more like to have problems if you don't band. You can see this post with all sorts of links regarding what medical issues plagio causes - Plagiocephaly/message/154335

Regarding facial and ear asymmetry, the band will help with that. However, if your daughter has torticollis that needs to be treated as well with physical therapy. With facial and ear asymmetry it is difficult to tell if it caused by the plagio or torticollis so you want to treat both. With the band and physical therapy you should get good correction.

Molly

Novato, California

Nicolas, 18 months, tort & plagio, STARband 4/25/06-9/12/06, Graduate!

, 4

, 7.5

-----Original Message-----From: Plagiocephaly-owner [mailto:Plagiocephaly-owner ] On Behalf Of LLCOLER@...Sent: 16 April 2007 12:20 AMplagiocephaly-owner Subject: (no subject)HI - my name is and my baby daughter has just been diagnosed with plagiocephaly - right side flat and I think she has torticullis. We are going to see a cranial specialist - Dr. Menard at Kaiser in Santa Clara CA - he works woth the Center for INdep. Rehab. Services in Palo Alto - they use Starband. My questions are as follows;1. I have read about potential brain damage and/or dev. delays and I am terrified - what do you know?2. Any ideas about the Dr or center?3. Will her facial asymmetry correct?4. Will her ear displacement correct?Thank you,**************************************See what's free at http://www.aol.com.

[Guest guest]

Hi ,

Welcome! I have to second everything Molly said - Dr. Menard was

great! We saw him for a second opinion at around 13 months. If you

suspect your daughter has torticollis, demand a referral to a

pediatric physical therapist - if nothing else, just for a consult.

My son had a very minor case of torticollis that went untreated

until he was 12 months that wound up causing some of his facial

asymmetry (hence my desire for a second opinion). I've also heard

very good things about CIRS in Palo Alto, so if you wind up needing

a band you're in good hands. As for developmental delays, my son

had severe plagio and moderate brachy and wore a band for over a

year and is doing just fine. He has some issues with motor

development, but I blame that on the untreated tort, not the band or

plagio. Good luck!

Sheila, mom to , 19 months

>

> Hi -

>

> My son saw Dr. Menard at Kaiser and we just loved him! We had

actually seen

> a dr. in Richmond and went to Dr. Menard for a second opinion.

Dr. Menard

> was great, much better than the first one that we saw. He took

measurements

> of Nicolas' head and reviewed the STARscan report that I had taken

a few

> weeks earlier. He said that Nicolas' measurements were borderline

> mild/moderate but that given his torticollis he recommended that

we go ahead

> with getting the STARband for him. I know someone else who saw

the same

> doctor for an evaluation and in her case he recommended not to get

the band.

> (I think part of the reason why I wanted to see this particular

doctor was

> that I was hoping he would say that my son didn't need a band

either) This

> makes me feel confident that he doesn't automatically recommend

banding

> every child with plagio. We ended up getting our STARband from

CIRS in

> Oakland (we live in Marin so Oakland was more convenient than Palo

Alto).

> We had a great experience at the Oakland and office and I've heard

great

> things about the Palo Alto office. You'll be in good hands there

if you

> decide to get a band.

>

> Are you concerned about brain damage or developmental delays if

you get the

> band? The opposite is actually true, you're more like to have

problems if

> you don't band. You can see this post with all sorts of links

regarding

> what medical issues plagio causes -

> Plagiocephaly/message/154335

>

> Regarding facial and ear asymmetry, the band will help with that.

However,

> if your daughter has torticollis that needs to be treated as well

with

> physical therapy. With facial and ear asymmetry it is difficult

to tell if

> it caused by the plagio or torticollis so you want to treat both.

With the

> band and physical therapy you should get good correction.

>

> Molly

> Novato, California

> Nicolas, 18 months, tort & plagio, STARband 4/25/06-9/12/06,

Graduate!

> , 4

> , 7.5

>

> (no subject)

>

>

> HI - my name is and my baby daughter has just been diagnosed

with

> plagiocephaly - right side flat and I think she has torticullis.

We are

> going to see a cranial specialist - Dr. Menard at Kaiser in

Santa

> Clara CA - he works woth the Center for INdep. Rehab. Services in

Palo Alto

> - they use Starband. My questions are as follows;

> 1. I have read about potential brain damage and/or dev. delays and

I am

> terrified - what do you know?

> 2. Any ideas about the Dr or center?

> 3. Will her facial asymmetry correct?

> 4. Will her ear displacement correct?

> Thank you,

>

>

>

> **************************************

> See what's free at http://www.aol.com.

>

[Guest guest]

Dear Sheila - thanks so very very much for writing me. My phone no. is

209-931-0676. How long was he in the band?? Can you recommend a therapist. My

baby is 5 mo - I am so so so sad and scared. I am at work - will be home after

3pm.

PS did the asymmetry and ear dislocation get better????

[Guest guest]

>

> I read all the emails that I get from this website, but no one

writes on any

> autoimmune diseases. I am loaded with autoimmune diseases but I do

not have

> MS and I am taking LDN for over a month now and I don't see any

progress. I

> need to know if LDN helps autoimmune diseases or not. Can someone

please

> help me? I am also looking for an aggressive doctor in the Bronx

or

> Westchester New York.

>

> Thank you.

>

>

> Charlene

=============

LDN's main purpose is to stop the progression of autoimmune diseases,

not improve symptoms. Only about two thirds may get symptom

improvement. Some people got improvement in a symptom or two at the

very start and others 6 months to a year after being on LDN and still

some do not see any symptom improvement but still get a halt in

disease progression.

It's now time to find an alternatve medicine doctor who will helpyou

compliment the LDN with detox programs for your body by detoxing,

yeast, mold and viruses. You can start by eliminating sugar, all

dairy, all gluten from your diet. It will take gluten at least 6

months to get out of your system. From a healthfood store or internet

you need to get anti-fungals of Olive Leaf Extract, Oil of Oregano,

Garlinase(do a google search), Caprylic Acid, Acidophilus. Anti-

virals, L-Lysine 500mg take as directed for 6 months then switch to

ViraStop(do google search) for 6 months.

If you would be interested in checkng out the Advanced Naturals detox

kits that I've used or am currently using let me know.

Take extra potassium and magnesium and drink plenty of distilled water

per day while detoxing.

Detoxing is no fun, do a google search on symptoms of detoxing the

body.

/Bren

[Guest guest]

Hello Charlene: what type of autoimmune diseases do you have? I have been taking ldn since Feb for an autoimmune disease, Polymyositis and it appears to be helping a great deal. I am not the only one taking ldn for something other than MS. Some here take it for cancer and Chron's and other diseases. I think if you will give the ldn at least 6-9 months you will see improvement. Perhaps if you can tell the group which diseases you are suffering from and your symptoms, someone may be able to offer more pertinent advice, but as far as the ldn goes, I don't think 1 month is long enough to see results. What other meds are you taking? These sometimes can interfere with ldn's effectiveness. Everyone here is very helpful, so please give a little more information about what you are struggling with.

Best wishes, Betty

[Guest guest]

Re:(no subject)

Hello Charlene: what type of autoimmune diseases do you have? I have been taking ldn since Feb for an autoimmune disease, Polymyositis and it appears to be helping a great deal. I am not the only one taking ldn for something other than MS. Some here take it for cancer and Chron's and other diseases. I think if you will give the ldn at least 6-9 months you will see improvement. Perhaps if you can tell the group which diseases you are suffering from and your symptoms, someone may be able to offer more pertinent advice, but as far as the ldn goes, I don't think 1 month is long enough to see results. What other meds are you taking? These sometimes can interfere with ldn's effectiveness. Everyone here is very helpful, so please give a little more information about what you are struggling with.

Best wishes, Betty

[Guest guest]

I am not really sure but it might be possible. Do you see a therapist

for the stretches? If not insist on a referral to a PT experienced

with tort. If you are already going are you happy with that person? if

not switch. If you like your therapist ask them about your perception

that it is worse.

Also are you seeing good correction from the head otherwise? It is

possible to get a bad fitting helmet that makes things worse. Luckily

this is not common but can happen with an inexperienced ortho.

-christine

sydney 16 mo starband grad

>

> HI - does anyone know if the face asym can get worse even when one

is doing

> phys therapy stretches for the tort and has a band???

> It just seems to be worse in teh mirror - or I am examining to close???

> - 6 mo

>

>

> **************************************

> See what's free at

> http://www.aol.com.

>

[Guest guest]

Reply from our wonderful president.........LOL......just what I expectedGet a sneak peek of the all-new AOL.com.

On behalf of President Bush, thank you for your correspondence.

We appreciate hearing your views and welcome your suggestions.

Due to the large volume of e-mail received, the White House cannot respond to

every message.

Thank you again for taking the time to write.

[Guest guest]

Thank you for clarifying, I must have missed that msg to Vicki, never read that

comment to her...but I did wonder when I saw your post what I missed.

Debbie

rheumatic (no subject)

I don't think my message was clear. I was disappointed in the comment made to

Vicki that she was being sour and having a pity party. I believe she is

sincerely looking and searching like the rest of us and deserves support for

as

long as it takes. Keep going Vicki. I'm thinking about you and praying for

you.

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Can you post a picture?

Thanks,

>

>

> I was wondering whether anyone knows whether the

parallelogram/lopsided look

> to the skull and front of the face goes away with time after the

helmet comes

> off?

> Thanks,

>

>

>

>

> **************************************

> See what's new at http://www.aol.com

>

[Guest guest]

- thanks for your honesty and I too hope for more rounding etc for both our children - and all of them. I really think pediatrician's need to let us know about this so much sooner. I have 3 older kids and they never had this - but it was back in the day when we were told to rotate them side to side - SO SMART - even tort cases - mild ones worked out and did not linger as they do with back to sleep.

laura************************************** See what's new at http://www.aol.com

[Guest guest]

I think your daughter's headshape may have been very similar to my

daughter's. All of the descriptions you have posted over the last few

months have sounded like it. We are set to graduate in 2 weeks and yes,

I still do see the parallelogram. I think I may always see it but I am

not sure if others are drawn to it the same way. It does not help that

her hair parts naturally to the side and accentuates it! I think we

went from a parallelogram that had two very obtuse angles to one that

is closer to a square but not quite there! My daughters eyes have

corrected with the band but her ears are still a little off and

probably always will be. A few have said they saw some post band

rounding, but many others have said no. It is interesting to note

though that people who never do the band will tell you their kids

rounded out. So the answer to your question is maybe /maybe not. I

don't think anyone would be able to tell you yes it will round out for

sure. I really hope it does for your daughter and mine but for now I

know I have to move on and stop looking at it. My daughter got great

correction and hopefully hair will cover the rest. I know that is not

the anwswer you wanted to hear but it is the best I have got as I am in

the same situation.

>

>

> I was wondering whether anyone knows whether the

parallelogram/lopsided look

> to the skull and front of the face goes away with time after the

helmet comes

> off?

> Thanks,

>

>

>

>

> **************************************

> See what's new at http://www.aol.com

>

[Guest guest]

Patty

You are welcome. I collected tons and tons

of information for about 8 years. I was going

to write a book ........" Behind Closed Doors"

the truth doctors hide behind ........

I have lots of things I am not suposed to.

I was so angry at how I was treated and what all

I went thru with the silicone and the rupture, I

was ready to snag them by the balls. I actually

had some hate in there. This is why I decided to

not write the book at the time. I knew that this

was not me, and I didnt want to be a part of hate.

So, I boxed it all up, and set it aside. The truths

still need to be told, but in an educational manner,

or a story manner, not with hate in my heart.

I no longer have that hate, I just dont know how I

want to approach it.

Love DedeSee AOL's top rated recipes and easy ways to stay in shape for winter.