New to the group

[Guest guest]

Hi Sue

It's nice to meet u and I want to thank you so much for introducing your self to

me and sharing with me a little about you... It is so nice to finally talk to

someone who understand me... It bothers me when someone asks what's wrong and u

tell them and they act like they understand when really don't have a clue... I

would like to find out all I can about RSD so maybe I can educate people around

here… I am trying to get information sent to me...

Take care

Tammy

new to the group

Hello Every one... My name is Tammy and almost three years ago I fell on the

ice and broke my ankle.. I had surgery and been to pt 4 different times which

really hasent helped that much… I was told by my Dr that I have RSD. my Dr

sent my to a pain management Dr...which after trying different kinds of pain

pills my pain management Dr told my about a procedure that was called a spinal

cord Stimulator [scs] well after do some research I decided to go ahead and try

it... so after going through the trial to see if it

[The entire original message is not included]

[Guest guest]

Tammy

You're welcome, but there's no need to thank me, that's what we're here for.

It's a good feeling to be able to speak to people who truly know what you are

going through,  people who won't judge you. The statement I hate the most

is " but you look too good to be in that much pain " .

Were you able to get on the RSDSA website? They can send you the info that you

are looking for. I use every opportunity I can to educate people about RSD.

Because I also use a cane, people are always questioning me about why I need

one. This gives me the perfect opening to explain to them about RSD. Of course,

most people don't know anything about it, so I try to educate them about it.

Once you learn about the disease yourself, then you can pass the info on to

others. Any questions or info you need, I will try to answer for you. Anytime

you want to talk, I am here for you and everyone else.

Sue C

________________________________

From: Tammy <tammytam20052000@...>

Stimulator

Sent: Monday, July 6, 2009 11:37:40 PM

Subject: RE: new to the group

Hi Sue

It's nice to meet u and I want to thank you so much for introducing your self to

me and sharing with me a little about you... It is so nice to finally talk to

someone who understand me... It bothers me when someone asks what's wrong and u

tell them and they act like they understand when really don't have a clue... I

would like to find out all I can about RSD so maybe I can educate people around

here… I am trying to get information sent to me...

Take care

Tammy

new to the group

Hello Every one... My name is Tammy and almost three years ago I fell on the ice

and broke my ankle.. I had surgery and been to pt 4 different times which really

hasent helped that much… I was told by my Dr that I have RSD. my Dr sent my to

a pain management Dr...which after trying different kinds of pain pills my pain

management Dr told my about a procedure that was called a spinal cord Stimulator

[scs] well after do some research I decided to go ahead and try it... so after

going through the trial to see if it

[The entire original message is not included]

[Guest guest]

Did you have a wrap with your Heller?

>

> Welcome and to your husband, too.

>  

> I had a Hellers Myotomy in January of 2006 and I'm doing really well.

> I wish you successes in finding good information and help here, that's

> what I get, as well as hearing stories of others and how they manage.

> It's an excellent group and Ann from England is a sweetie.

>  

> Best in 2009, Deborah at the beach

>

>

[Guest guest]

Yes Iodine would help you but if you thyroid is low and failing you probably need to address that as well. When you quit taking the thyroid meds your thyroid probably was in the process of dying off and then you switched to your "auxiliary" power which is the adrenals. They are the sprinters and not marathon runners and eventually they die out too and you are in full blown adrenal fatigue. Then your sex hormones drop, anxiety and depression set in as well as weight gain around the middle section from increased cortisol productions. Insomnia is common as well. Thyroid will give you low body temps and weight gain. Try taking your temp under arm before rising and see if it is 97.8 or higher. If it is lower then odds are you are hypothyroid as well.

Steph

new to the group

Hi all! Five years ago I was diagnosed with Graves disease. After beta blockers and radioactive iodine therapy, I then began thyroid replacement pills. (I forget what they are called) Well, apparently the radioactive iodine did not kill my overactive thyroid so I quit taking the pills and have not been to endocrinologist since. I am now afraid my thyroid is not working. Walked and ran on treadmill with no heart rate increase and I was really pushing it. I am tired, depressed and am gaining weight like crazy. Would iodine help me? Thanks in advance for your help, christine

[Guest guest]

you might suffer from adrenal fatigue

>

> Hey Everyone,

>

> I am new to the group and have quickly been absorbing all of the great

knowledge that all of you are passing on. I am hoping there might be someone out

there that can help with my situation.

>

> I have been on Synthroid since 1995 and was always on a low dose. 25 mcgs

until just recently. I am now 38 and have never really felt hypothroid. I don't

suffer from fatigue, depression or weight gain. In fact I have trouble keeping

it on. Which is troublesome. I have been to two different specialist in my area

and just don't feel like they are understanding me. Most recently I complained

that when they increased my dosage to .75mcgs I started having more

palpatations, difficultly sleeping and hair thinning more. But then my recent

labs came back and they said my TSH is still too high and they want to increase

my doasage. I just don't feel comfortable with this and haven't yet. Here's what

it said...

>

> Ferritin 6

> Free T4 1.03

> TSH 10.9

> Vit B-12 1034

> Cortisol 13

> Thyroid Perioxidase AB 74

>

>

> ACTH 19 ?

>

> I guess that's all that seems important. I am going to do the iodine loading

test, but am wondering if you all have anything to add. I am frustrated with the

medical community as a whole.

>

> Thanks,

>

>

[Guest guest]

Hi Kisha,

You must mean 5% lugols not 5mg?

A dropperful isn't a good idea. A normal drop of lugol's 1 drop, is

approximately 6.5mg.

When starting, a lot are nervous and perhaps take 1 drop in a glass of water

until they feel comfortable.

Best is to do some reading, comfort and assurances result from knowing with

a degree of certainty.

Speph has a site, go through it -- knowledge is power

See companion nutrients, this is important

http://www.naturalthyroidchoices.com/IodineSuppl.html

Dr Abraham has a study on iodine and autoimmune thyroditus

www.optimox.com/pics/Iodine/pdfs/IOD22.pdf

His site is http://www.optimox.com/

See Research.

Others will respond as well when they have time/online but this is a good

start I hope.

Bruce

----- Original Message -----

From: kisha

[Guest guest]

I had a gastric by pass 9 years ago. I do know that my achalasia problem

started in my 20's, I'm now 46. My surgery is in a few days. I'm worry

all the way around, partly because of the by pass and it effects on this

surgery. I don't know anyone from this group who is in my same boat. But, I

really feel God blessed me when I found this group. As silly as it is I

feel God whispered in my ear to google achalasia! Anyway I was not much help

here for you, but I did want to answer your post. I very happy for you

that you are doing so will, continued success!

Merilee

Oregon

[Guest guest]

Hello, back at you,

There is a Jeanie in Montana who had weight loss surgery w/ the myotomy. She is

more than happy to talk to those of you facing the same thing. I talked to her,

maybe about a year ago and she was doing well. I'll email her to check in on

the messages here. She went to Seattle for her surgery.

A lot of new people w/ weight issues. It is pretty common for those of us to

have weight issues. Being overweight can cause a lot of problems for everyone,

perhaps it triggered achalasia for us. But it seems like more of us are

overweight than the general population. Many of us continue to have weight

problems even after surgery, maybe because higher fat foods are still a little

easier.

If a doctor is surprised to see one of us w/ achalasia and overweight, then I'd

suggest that doctor hasn't seen many of us. There are a few here that have been

naturally thin all their life, but truthfully, I'd guess 80% of us have had a

weight problem previously, or even continue to have a problem.

Sandy

>

> Hello All,

>

> I'm new to the group and new to achalasia. I had lapband surgery in April

'09. All was great, I was losing weight, the band was doing its trick...until

about 4 or 5 months ago. There were times when I would eat that I could only

eat a few bites and then I was full for hours - so full that I couldn't even

drink. I was thinking that my band was REALLY working well and I was almost

excited that my intake was so restricted because I was losing weight. Well,

then the puking started. I would eat and, more often than not, throw up a few

minutes later. Then the reflux started while I was sleeping. This is what

pushed me to go back to see my surgeon. It was miserable - as soon as I'd fall

asleep I'd get this rush of dinner coming back up. My doctor took all the fluid

out of my band to see if that would fix it, which it didn't. From there I had a

barium swallow, then endoscopy then manometry. He diagnosed it as achalasia.

Over the past couple of months my symptoms became so bad that I was having a

difficult time swallowing water at times.

>

> Last Monday I had my lapband removed, a heller myotomy and a dor

fundoplication. I seem to be recovering well - still pretty sore but able to

keep my limited diet down - he has me on a full liquid diet until I see him

again this Thursday and will hopefully increase me to soft foods. I am

overjoyed to be sleeping again - the whole night!

>

> As sad as I am to have my gastric band removed (still have about 50 pounds to

lose) I'm thankful to not be struggling with eating and drinking. Wondering if

anyone here has a similar story? Since it's such a rare diagnosis to begin with

I can't imagine there are many of us who have had weight loss surgery. I was a

first for my doctor. The odd thing is is that I didn't have symptoms prior to

my weight loss surgery.

>

> Anyway, thanks for this group and to all who post. I've enjoyed reading the

posts and have learned a lot already.

>

> Donna

>

[Guest guest]

Thats interesting. My A started after I quit smoking! I was really frustrated

that my health went downhill after quiting. I actually got diagnosed with A

after a bout of aspiration pneumonia 3 months after quiting smoking. I used to

drink a lot when I was younger too. Still drink occasionally, but beer is very

difficult due to the carbonation. Unfortunately carbonation wreaks havoc with

swallowing for me.

 

Dan in Chicago

 

From: Eley <melly.elly@...>

Subject: New to the group

achalasia

Date: Monday, February 8, 2010, 8:36 AM

 

Having seen my husband being faffed about with 2 botox and 6 dilations, and

reading articles, visiting this group, I'd hazard a semi educated guess at

going for myotomy and staying as clear as poss from dilations and botox which by

all accounts are short lived and can create problems, like death 5% (dilation).

Hubby is a smoker, doesn't drink much but as a young lad, he did. He gave up

drinking & smoking for 8 months to see if made A any better. Coincidence or not,

A got worse, so he started smoking again.

 

Good luck with your tests.

[Guest guest]

Dan, I am also in that boat. Quit smoking about 5 years ago and my problems

started about a year after that. I wonder if there is a relationship, actually

I am confident there is. I am not going to take up smoking again, but i wonder

if there is something that could simulate the effects on the nervous system.

>

>

> From: Eley <melly.elly@...>

> Subject: New to the group

> achalasia

> Date: Monday, February 8, 2010, 8:36 AM

>

>

>  

>

>

>

> Having seen my husband being faffed about with 2 botox and 6 dilations, and

reading articles, visiting this group, I'd hazard a semi educated guess at

going for myotomy and staying as clear as poss from dilations and botox which by

all accounts are short lived and can create problems, like death 5% (dilation).

> Hubby is a smoker, doesn't drink much but as a young lad, he did. He gave up

drinking & smoking for 8 months to see if made A any better. Coincidence or not,

A got worse, so he started smoking again.

>  

> Good luck with your tests.

>

>

[Guest guest]

This is a good place to chat and get connected with other with the

disease.  There are many people here that are willing to listen and support

you.  You can contact me anytime if you would like to talk or ask any

questions.

in Georgia

mt4mar@...

 <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

________________________________

From: uncanny_nanny <sereenachurch@...>

achalasia

Sent: Wed, March 3, 2010 8:47:12 AM

Subject: New to the group

 

Hi all! I am new to this group. I am 4 1/2 weeks post-op with Heller Myotomy.

Scheduled to go back to work tomorrow and I am eating and feeling much better. I

am interested in the link with voice issues and the achalasia. My specialist has

told me that the two are related but I am not sure how. I am a high school

teacher and my voice issues are a major concern. Any ideas?

[Guest guest]

Thanks! There are so few people to talk to that understand this disorder. Even

the nurses in the hospital didn't have a clue about what was going on. I look

forward to chatting with you all.

Sereena

Virginia

>

> This is a good place to chat and get connected with other with the

disease.  There are many people here that are willing to listen and support

you.  You can contact me anytime if you would like to talk or ask any

questions.

>

> in Georgia

> mt4mar@...

>  <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia

</FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

>

>

>

>

> ________________________________

> From: uncanny_nanny <sereenachurch@...>

> achalasia

> Sent: Wed, March 3, 2010 8:47:12 AM

> Subject: New to the group

>

>  

> Hi all! I am new to this group. I am 4 1/2 weeks post-op with Heller Myotomy.

Scheduled to go back to work tomorrow and I am eating and feeling much better. I

am interested in the link with voice issues and the achalasia. My specialist has

told me that the two are related but I am not sure how. I am a high school

teacher and my voice issues are a major concern. Any ideas?

>

>

>

>

>

>

>

>

[Guest guest]

>

>

>

Are you going to Mt. Sinai hospital in Toronto?

[Guest guest]

Hi Bobbi,

Welcome, it's great you are seeking answers since you're clearly not

getting them from your doctors. This actually isn't really the list that

can best help you with your needs. This list discusses the iodine protocol,

and you need help with figuring out your thyroid issues. I'm not sure

which list is best to recommend.

Can people recommend the (whole-thyroid), helpful thyroid lists that Bobbi

could turn to for help? I don't know which is the best one to recommend

where she can get some detailed attention for her situation. If possible,

can people provide a link for Bobbi to make is easy on her? The search

capacity on is not very good.

--

At 07:03 PM 4/21/2010, you wrote:

>Hello everyone my name is Bobbi I live in Delaware and I have thyroid

>issues so please let me know if I post something wrong as I can not recall

>all in the rules

>I am 45 had left thyroid removed in 2005 no meds and about 8 mo ago I

>could not get out of the bed had to really force myself , finally called

>doc and he at first was not going to do anything till I reminded him he

>took a tsh test and so did my diabetes doc he compared and I was right

>thyroid was off he put me on 0.025 mg of levothyroxine and it works ever

>so often , my new doc as I fired old doc took test last wk and said i was

>fine but my symptoms are still there no interest in anything. tired not

>hungry legs swelling losing hair rash etc what test do I need him to give

>me to get this right I can not afford the self paying test (disability)

>

>

>

>------------------------------------

>

>All off topic posts should go to the IodineOT

>group IodineOT/

>

>

>Commonly asked questions: http://tinyurl.com/yhnds5e

[Guest guest]

Hi Bobbi,

I hope you continue on this group to learn about the Iodine protocol.

has asked that you also be referred to a Thyroid group and two I am on

are Thyroidless and Natural Thyroid Hormones. Both are active, helpful,

informative.

NaturalThyroidHormones/?yguid=434327201

NaturalThyroidHormones/?yguid=434327201

I invite you to join those. Start a new post there so your message dont get

" lost " in older posts.

Post any Lab results you have. Especially remember to post the RANGES of those

labs.

I have Grave's Disease, Hashimoto's and have had RAI. The Rai " fixed " the hyper

part of Graves, but I still am loaded with antibodies and therefore using the

Iodine Protocol to stop/reduce them.

Welcome to the group.

Val M.

>

> Hello everyone my name is Bobbi I live in Delaware and I have thyroid issues

so please let me know if I post something wrong as I can not recall all in the

rules

> I am 45 had left thyroid removed in 2005 no meds and about 8 mo ago I could

not get out of the bed had to really force myself , finally called doc and he at

first was not going to do anything till I reminded him he took a tsh test and so

did my diabetes doc he compared and I was right thyroid was off he put me on

0.025 mg of levothyroxine and it works ever so often , my new doc as I fired old

doc took test last wk and said i was fine but my symptoms are still there no

interest in anything. tired not hungry legs swelling losing hair rash etc what

test do I need him to give me to get this right I can not afford the self paying

test (disability)

[Guest guest]

Hi Bobbi,

I hope I didn't sound like I wasn't welcoming you. It's just that our sole

focus is not thyroid, and you really need that focus. Please do stay and

learn about iodine, absolutely! I'm quite the enthusiast and have

Hashi's and fibromyalgia, so I really understand the need to get your

thyroid stuff sorted out.

with best wishes,

--

At 12:40 AM 4/22/2010, you wrote:

>Hi Bobbi,

>I hope you continue on this group to learn about the Iodine protocol.

>

> has asked that you also be referred to a Thyroid group and two I

>am on are Thyroidless and Natural Thyroid Hormones. Both are active,

>helpful, informative.

>

>NaturalThyroidHormones/?yguid=434327201

>

>NaturalThyroidHormones/?yguid=434327201

>

>I invite you to join those. Start a new post there so your message dont

>get " lost " in older posts.

>Post any Lab results you have. Especially remember to post the RANGES of

>those labs.

>

>I have Grave's Disease, Hashimoto's and have had RAI. The Rai " fixed " the

>hyper part of Graves, but I still am loaded with antibodies and therefore

>using the Iodine Protocol to stop/reduce them.

>

>Welcome to the group.

>

>Val M.

>

>

> >

> > Hello everyone my name is Bobbi I live in Delaware and I have thyroid

> issues so please let me know if I post something wrong as I can not

> recall all in the rules

> > I am 45 had left thyroid removed in 2005 no meds and about 8 mo ago I

> could not get out of the bed had to really force myself , finally called

> doc and he at first was not going to do anything till I reminded him he

> took a tsh test and so did my diabetes doc he compared and I was right

> thyroid was off he put me on 0.025 mg of levothyroxine and it works ever

> so often , my new doc as I fired old doc took test last wk and said i was

> fine but my symptoms are still there no interest in anything. tired not

> hungry legs swelling losing hair rash etc what test do I need him to give

> me to get this right I can not afford the self paying test (disability)

>

>

>

>

>------------------------------------

>

>All off topic posts should go to the IodineOT

>group IodineOT/

>

>

>Commonly asked questions: http://tinyurl.com/yhnds5e

[Guest guest]

Welcome ,My name is Steve Best, I am a special education teacher and Brain Gym Instructor in East Tennessee. I am in training for the Masgutova Method. My understanding is limited with epilepsy, my experience is more relevant. I have a child in my class that I work with daily for the last 2 years. When she first came to me she was like the energizer bunny, she would run from one wall, bump into it and then run to the opposite wall and bump into it. The play ground was cause for myself, PT's and attendants heart attacks, she would access playground equipment with no fear of falling and ineffective fall protection or fear of heights. She had grand mal seizures when she started school two years ago, around Thanksgiving 08 she had the corpus colostomy surgery. Progress was limited although the seizures were greatly reduced.I attended Postural and Dynamic Reflexes and Tactile Integration this school year, . At this point she averages maybe 2 petite seizures per week and is on one medication. colonapen (sp) But this is not my point. The tactile work that I do as well as Brain Gym seems to help. Two years ago she had a vocabulary of about 10 words and randomly used them. My speech therapist told me last month that she spoke over 50 new words that month. This month she is saying more two work phrases. Her vocabulary has greatly improved since I took the Tactile Integration course. She tends to be hypersensitive to touch so I have to be very careful what I do / where I touch her. As I stated I am in training for this Masgutova Method but what I have experienced is almost beyond my expectation. Everyone that has followed her for the last two years comments on the progress she has made. I am attending the Kelowna Conference for further training and looking forward to next year, for me I have not been so excited as a Special Education Teacher in my career. Best RegardsSteveOn Apr 27, 2010, at 8:35 PM, Mcgillivray wrote:

Hi everyone,My name is McGillivray. I am from Oakville, Ontario, Canada. It was highly recommended that I join your group to help me connect with other parents with special needs children and who have tried Dr. Svetlana's methods.I have two children with special needs. My son, Spencer is 12 and has cerebral palsy due to a problem during pregnancy with his identical twin that stopped developing at 17 weeks gestation. Spencer was diagnosed with spastic quadriplegia C.P. at 8 months old. He has difficulty with his speech but not his vocabulary. People who don't know him find it very difficult to understand him which is a shame because he is very sociable and loves to talk. He uses a walker, wheelchair, stander and A.F.O.'s. He can walk without a walker if we hold on to him

and has been doing this since he was 2 years old.Over the course of 11 years, we have done M.E.D.E.K. therapy, Conductive Education from the March of Dimes, Hippotherapy, osteopathy, chiropractic, traditional physio, swimming, some Brain Gym and have a kinesiologist who has worked with him for the past 3 years doing neuro development work.A week ago Friday, we had the privilege of meeting Dr. Svetlana Masgutova in Guelph, Ontario where Spencer was assessed and given a home program. I was so impressed with the work, as well as with her beautiful personality. We have been doing the home program with our kinesiologist ever since and are noticing some subtle changes already. I am strongly considering going to the family conference this July in Kelowna for 5 days. I'm wondering if anybody else is going or has been to a family conference before and if so, was it worth it.I also have an 8 year old daughter, , who has intractible

epilepsy. After 9 different meds, naturopathy, osteopathy, chiropractic, healers, Reiki and neuro development work, her seizures are still not controlled and continue to be daily. Dr. Svetlana had some advice for me for and is going to keep in contact and there is a good possibility that her method could be helpful. There is a study that is or will soon be done in the U.S. over the course of 3-4 years to determine the effectiveness of her method for epileptics.If there is anybody who has any advice or additional info. that would be helpful, I would greatly appreciate it. Sincerely, McGillivray

Best Ed.S Sp. Ed. Brain Gym instructor/consultant537 McJunkin RdTellico Plains, TN 37385423-261-2279423-261-4228 cellwww.mindbodyconnects.netwww.braingym.org

[Guest guest]

Hi Steve,Thanks for all the wonderful info. and experience with your student. I will have to look into taking that course and others as well.We too are attending the Kelowna conference in July. We're all looking forward to it. I can't wait to see the progress that Spencer will make since we've already noticed some changes in only 2 weeks. All the knowledge I acquire I will be able to use on my daughter as well so it's a win-win. Hope to meet you there,From: Best <scbest@...> Sent: Wed, April 28, 2010 6:38:37 PMSubject: Re: New to the group

Welcome ,My name is Steve Best, I am a special education teacher and Brain Gym Instructor in East Tennessee. I am in training for the Masgutova Method. My understanding is limited with epilepsy, my experience is more relevant. I have a child in my class that I work with daily for the last 2 years. When she first came to me she was like the energizer bunny, she would run from one wall, bump into it and then run to the opposite wall and bump into it. The play ground was cause for myself, PT's and attendants heart attacks, she would access playground equipment with no fear of falling and ineffective fall protection or fear of heights. She had grand mal seizures when she started school two years ago, around Thanksgiving 08 she had the corpus colostomy

surgery. Progress was limited although the seizures were greatly reduced.I attended Postural and Dynamic Reflexes and Tactile Integration this school year, . At this point she averages maybe 2 petite seizures per week and is on one medication. colonapen (sp) But this is not my point. The tactile work that I do as well as Brain Gym seems to help. Two years ago she had a vocabulary of about 10 words and randomly used them. My speech therapist told me last month that she spoke over 50 new words that month. This month she is saying more two work phrases. Her vocabulary has greatly improved since I took the Tactile Integration course. She tends to be hypersensitive to touch so I have to be very careful what I do / where I touch her. As I stated I am in training for this Masgutova Method but what I have

experienced is almost beyond my expectation. Everyone that has followed her for the last two years comments on the progress she has made. I am attending the Kelowna Conference for further training and looking forward to next year, for me I have not been so excited as a Special Education Teacher in my career. Best RegardsSteveOn Apr 27, 2010, at 8:35 PM, Mcgillivray wrote:

Hi everyone,My name is McGillivray. I am from Oakville, Ontario, Canada. It was highly recommended that I join your group to help me connect with other parents with special needs children and who have tried Dr. Svetlana's methods.I have two children with special needs. My son, Spencer is 12 and has cerebral palsy due to a problem during pregnancy with his identical twin that stopped developing at 17 weeks gestation. Spencer was diagnosed with spastic quadriplegia C.P. at 8 months old. He has difficulty with his speech but not his vocabulary. People who don't know him find it very difficult to understand him which is a shame because he is very sociable and loves to talk. He uses a walker, wheelchair, stander and A.F.O.'s. He can walk without a walker if we hold on to him

and has been doing this since he was 2 years old.Over the course of 11 years, we have done M.E.D.E.K. therapy, Conductive Education from the March of Dimes, Hippotherapy, osteopathy, chiropractic, traditional physio, swimming, some Brain Gym and have a kinesiologist who has worked with him for the past 3 years doing neuro development work.A week ago Friday, we had the privilege of meeting Dr. Svetlana Masgutova in Guelph, Ontario where Spencer was assessed and given a home program. I was so impressed with the work, as well as with her beautiful personality. We have been doing the home program with our kinesiologist ever since and are noticing some subtle changes already. I am strongly considering going to the family conference this July in Kelowna for 5 days. I'm wondering if anybody else is going or has been to a family conference before and if so, was it worth it.I also have an 8 year old daughter, , who has intractible

epilepsy. After 9 different meds, naturopathy, osteopathy, chiropractic, healers, Reiki and neuro development work, her seizures are still not controlled and continue to be daily. Dr. Svetlana had some advice for me for and is going to keep in contact and there is a good possibility that her method could be helpful. There is a study that is or will soon be done in the U.S. over the course of 3-4 years to determine the effectiveness of her method for epileptics.If there is anybody who has any advice or additional info. that would be helpful, I would greatly appreciate it. Sincerely, McGillivray

Best Ed.S Sp. Ed. Brain Gym instructor/consulta nt537 McJunkin RdTellico Plains, TN 37385423-261-2279423-261-4228 cellwww.mindbodyconnect s.netwww.braingym. org

[Guest guest]

I would suggest going to lymphoma.org/booklets an ordering a copy of the CLL booklet as a starter. It sounds like you need at the very least a hematologist familiar with CLL, preferably a CLL specialist.. If you give your general location others on the list can recommend doctors who might be near you.

PatOn Tue, May 11, 2010 at 7:45 PM, <denickite@...> wrote:

 

I found out I had CLL a year ago after a blood test. The doctor said I had stress. Prior to that I had been in three times in two months with a huge lump under my arm, a horrible cold that wouldn't go away, and finally a headache that lasted for over a week. The doctor finally ordered a blood test. The oncon that I see now basically orders blood work and I go in about every two months. I'm 58. He believes that I have had this for a about three or more years. Anyway, would appreciate suggestions as to questions to ask and if there is a treatment? My white count continues to raise after each test.

denise

[Guest guest]

I would also advise that you visit http://cllforum.com  and   http://www.clltopics.org/index.phpThe forum is a large group of individuals with CLL and have all kinds of experience with CLL.  The clltopics is a list of CLL related topics.

On Tue, May 11, 2010 at 10:45 PM, <denickite@...> wrote:

 

I found out I had CLL a year ago after a blood test. The doctor said I had stress. Prior to that I had been in three times in two months with a huge lump under my arm, a horrible cold that wouldn't go away, and finally a headache that lasted for over a week. The doctor finally ordered a blood test. The oncon that I see now basically orders blood work and I go in about every two months. I'm 58. He believes that I have had this for a about three or more years. Anyway, would appreciate suggestions as to questions to ask and if there is a treatment? My white count continues to raise after each test.

denise

[Guest guest]

Bill,

Sorry that you are here but welcome! I've been in the group for about a year and have learned a great deal from the postings of the other members.

You will see that there are more 40 and 50 year olds than the stats would indicate. Also, many members, including myself (aunt on my dad's side), have family members with cll.

(52, male, dx ~12/08)

From: w_meeker <w_meeker@...>Subject: New to the group Date: Thursday, May 13, 2010, 2:53 PM

Hi all! I was diagnosed with Stage IA SLL three months ago (February 2010). I also am a member of the autoimmune disease club, as I also am presumed (confirmed auto-immune disorder)to have Systemic Lupus Erythematosis (Lupus) as well. I'm currently in relatively good health and am in "watchful waiting" mode. I am a 53 year old male (living in San Francisco, California) whose mother was treated for CLL from 1968 until her death in 1979 (I was 23 at the time of her death). Here I am 31 years later with what is essentially the same disease; so though I'm a "newby" in terms of my direct personal experience with the disease, I do have a bit more knowledge having observed my mother's travails over her eleven years with CLL. I'm attempting to keep my head "screwed on straight" and not let my diagnosis rule my life, particularly since I am quite healthy at the moment; though I know that at some point in the future active treatment will begin. For the time

being, I'll be checking in on the group periodically to learn from others' experiences. I hope everyone is doing well at the moment! Bill

[Guest guest]

Hi Del, T4 starting to work and then running out is typical of insufficient doseage- you're still on 50mcg? a full replacement dose is usually about 125-150mcg. What may have happenes is that taking T4 has shut down your resirual thyroid function,but there is insufficient yet to fully take over- T4 may still be the right med for you- so it is easier to try foe the max it can give you before dipping into the troubled waters of seeking natrual dessicated thyroid or T3 supplementation. You also need your vits and minerals sufficeintly high to absorb and convert your T4 properly . Iron zinc copper selenium are particularly important. Try also to get FT3 tested- then you will know if you can conver T4 to the active hormone T3. > thyroid treatment > From: delytheirwyn@...> Date: Fri, 18 Jun 2010 09:54:38 +0000> Subject: New to the group> > Hello everyone,> > I am new to the group and wanted to introduce myself.> > I was diagnosed hypothyroid in January 2010 and have been riding on an emotional roller coaster ever since. In the year preceding my diagnosis I had been nursing my step-father, who died of lung cancer last September. So, all-in-all a rather life-changing year and a half.> > When I was diagnosed initially, I was given 25 mcg of Levothyroxine. The main symptom that sent me to the doctor at first was my persistent bleeding, my menstrual cycle wouldn't stop. I thought this was due to the stress I was under, but my thyroid problems were the cause of that. This stopped within a week of my first dose of Levothyroxine. I was excited that I might be one of the lucky people, that Synthroid would be okay for me. (I had already read about the delicate nature of this condition on various websites)> > Despite my menstrual cycle being sorted, I still felt tiredness, aches, depression and a lack of clarity in my head. But I put this all down to the grief that I was in the middle of.> > I went back to my home town, having helped my mum as much as I could, and went to see my own doctor (I had initially been seen by my mum's doctor at my step-dad's surgery). My doctor told me that my bloods were now fine and that my thyroid was okay - but that I was anemic and needed iron tablets. I told him I was feeling terrible - and he replied that I would be feeling awful for at least a couple of months. He turned his back and wrote a prescription - and that was it.> > The iron tablets were horrid. I felt sick, ill from the thyroid and had awful boils on my skin. I didn't want to leave the house. I was constantly in tears.> > I suffered like this for a month, until it was time to see the doctor again. I made an appointment with the other doc at the surgery - who agreed with me that I wasn't well, that the bloods showed that I was still hypo and that I needed 50mcg of Levothyroxine. I left feeling relieved that I might get somewhere.> > After two weeks of 50 mcg, I started to feel ecstatic - I was beginning to feel normal again. The cloud in front of my eyes was dispersing and I was feeling a lightness about me. My skin was still awful, huge boils on my face, but they were getting less and I was hoping that they would go once the effect of the iron was gone. The next check with my doc was after three weeks - the bloods were good. TSH was down to 0.3, T4 looked good. I was feeling great.> > Feeling this good didn't last long. It may have been about a month later when I started to feel the symptoms creeping back. It was my irritability that was the major sign. I wasn't able to tolerate the smallest things and would find myself in a constant battle with myself to keep my anger under control. As the weeks have gone on, I am now having days where my energy levels are almost as low as when I was on 25mcg. The tears are never far away. My skin is a mess. I am depressed.> > I have made an appointment to see my doctor - he is away on holiday for two weeks. I will see the other doc at the surgery, the one who has no idea how to treat my condition.> > Things are spiralling out of control. I have now bought Armour over the internet. It hasn't arrived yet, but I am considering self-medication, which scares me a bit. I have started to take Nutri Adrenal Extra, figuring that this is only a bunch of vitamins. I am desperate. I have been in tears for almost a week - and I need to try and sort myself out, somehow.> > My mum insists that I go to see a specialist. I will ask the doc on Monday for a referral to a private doctor. Dr is in Cardiff and is a specialist in thyroid conditions, apparently.> > I'm sorry to have gone on and on - but I wanted to get all the details down here. Any advice would be great.> > Thank you for reading.> > Del> > > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Thank you so much for your reply, .

I've been spending most of the day fighting the tears - and you have helped to

make me feel a little more positive. It could be as simple as that - more

Levothyroxine. That won't be too difficult to get my doctor to help me with!

Thanks again - your response is very much appreciated. I'll be looking into the

suggestions you make.

Del

>

>

> Hi Del,

> T4 starting to work and then running out is typical of insufficient

doseage- you're still on 50mcg? a full replacement dose is usually about

125-150mcg. What may have happenes is that taking T4 has shut down your resirual

thyroid function,but there is insufficient yet to fully take over- T4 may still

be the right med for you- so it is easier to try foe the max it can give you

before dipping into the troubled waters of seeking natrual dessicated thyroid or

T3 supplementation.

> You also need your vits and minerals sufficeintly high to absorb and convert

your T4 properly . Iron zinc copper selenium are particularly important. Try

also to get FT3 tested- then you will know if you can conver T4 to the active

hormone T3.

>

>

> > thyroid treatment

> > From: delytheirwyn@...

> > Date: Fri, 18 Jun 2010 09:54:38 +0000

> > Subject: New to the group

> >

> > Hello everyone,

> >

> > I am new to the group and wanted to introduce myself.

> >

> >

> >

>

> _________________________________________________________________

> http://clk.atdmt.com/UKM/go/197222280/direct/01/

> Do you have a story that started on Hotmail? Tell us now

>

[Guest guest]

Hello Del - welcome

to our forum and I hope you get the help and support you need.

Being prescribed

50mcgs levothyroxine only is a very low dose. Your doctor should be treating

your SYMPTOMS and not your blood results, which he is obviously doing. You need

to increase your dose by 25mcgs every 6 to 8 weeks until your symptoms have

gone and you feel good. The average dose is 125 to 150mcgs, so I would ask your

doctor to give you a trial of another 25mcgs. There are many problems with

blood tests, the main one that all these show is the level of thyroid hormone

that is in your BLOOD. They do not show what is happening at cellular level -

i.e. is the thyroid hormone actually getting into your cells.

Thyroxine is a

mainly INACTIVE hormone that MUST convert to the ACTIVE thyroid hormone T3. It

is T3 every cell in your body and brain needs to make them function. You should

discuss this with your doctor - I bet he has never even considered thyroid

hormone deficiency in the cells. There are many, many people unable to convert

T4 to T3, and they need the thyroid hormone T3 (or Cytomel). The even better

thyroid hormone is natural desiccated thyroid extract because it contains all

the thyroid hormones a normal body needs.

However, be aware

that many sufferers of hypothyroidism also suffer with some of the associated

conditions. These are low adrenal reserve, systemic candidiasis, mercury

poisoning caused through amalgam fillings. Or any of the following might be low

in the reference range: ferritin, vitamin B12, vitamin D3, magnesium, folate, copper

or zinc - and any one of these could stop your thyroid hormone from being

absorbed by the cells. Whatever you find to be low, you would have to

supplement.

Do you think it

might be worth giving your doctor another chance? If so, write him a letter

setting out all your present symptoms and signs. Tell him you are no longer

prepared to put up with feeling so bad when you know there are other forms of

thyroid hormone replacement available which are the 'active' hormones and what

your body needs to make every cell function. Ask him to do the blood tests

mentioned, though I doubt they would test for low adrenal reserve, they ONLY

test to see whether you have 's disease (too low or no cortisol

secretion), or Cushing's Syndrome (too high a level of cortisol). They don't

even know about adrenal fatigue. However, you can get this tested private via a

24 hour salivary adrenal profile that tests the level of cortisol and DHEA at

four specific times during the day. Ask your GP to refer you to an

endocrinologist, preferably one who's specialty is thyroid disease, as opposed

to diabetes. Ask for your letter of requests to be placed into your medical

notes. Often doctors pay more attention to you when you put things in writing.

Go to our FILES section

(you will find this in the Menu on the Home Page of this forum web site). On

the Page that opens, click on the FOLDER 'Armour' and scroll down until you see

one entitled " How to Use Armour Thyroid " . This information is the

same for whatever brand of desiccated thyroid extract you use, Nature Throid,

Westhroid, Erfa 'Thyroid' or Armour Thyroid. The only difference is that the

Armour formulae has changed since I put out this document, and you can no

longer take it sublingually. The ONLY brand you can now take sublingually is

the Erfa 'Thyroid'. Make sure you understand every word before starting it

yourself, but PLEASE be aware, that you should check whether you have adrenal

fatigue first, because you should not start any form of thyroid hormone

replacement until you have started taking adrenal glandulars for one week at

least.

Nutri Adrenal Extra

is to help boost your adrenal action, which is what we recommend people take.

Let us know what your GP says about your referral, and I hope the doctor you

mention is good - because we have learned that so many within the NHS are too

afraid to diagnose and treat outside of the NHS guidance.

Luv - Sheila

Things are spiralling out of control. I have now bought Armour over the

internet. It hasn't arrived yet, but I am considering self-medication, which

scares me a bit. I have started to take Nutri Adrenal Extra, figuring that this

is only a bunch of vitamins. I am desperate. I have been in tears for almost a

week - and I need to try and sort myself out, somehow.

My mum insists that I go to see a specialist. I will ask the doc on Monday for

a referral to a private doctor. Dr is in Cardiff and is a

specialist in thyroid conditions, apparently.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

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18:35:00

[Guest guest]

Sheila - just wanted to thank you so much for your detailed response. I don't

feel quite so afraid now that I know there is a support network here. Thanks so

much.

There are many things to consider now that I have been equipped with more

knowledge. The panic seems to have eased a fair bit - I'm very grateful to you.

I'll be seeing my doctor a week Monday. Fingers crossed that he turns out to be

a good one!

Del

>

> Hello Del - welcome to our forum and I hope you get the help and support you

> need.

>

> Let us know what your GP says about your referral,

> and I hope the doctor you mention is good - because we have learned that so

> many within the NHS are too afraid to diagnose and treat outside of the NHS

> guidance.

>