Re: (unknown)

[Guest guest]

Hi Bobby - good to hear you are going well. Bugger with the knee - you

should try the electric soda remedy as it does help heaps and ice pack.

Yes it is a bummer about Lottie - she told me she had been unwell.

Regards,

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Tuesday, 21 July 2009 10:15 AM

Subject: [ ] (unknown)

Hi, anyone ever have bursitis? In the knee? I thought it may be arthritis,

but it came on so suddenly, and was very painful. Saw my rheumatologist

today, got a shot of something he said was more powerful than cortisone,

depo something. Didn't hurt as badly as I thought it would, and I sure hope

it works. Also got labs today, they were all good too, the hgb is 10

something, now would be a good time to get Aranesp shots, but medicare said

I have to pay $1,700/shot. So, will wait til it gets down to 8 and go for

two units of blood, costing $3,700.00.

Besides not feeling well, I believe Lottie is at MDACC today and tomorrow.

Here's wishing her well, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

Bobby,

My mom had bursitis in her hip. It is very painful! Hopefully the shot will take

care of it for you. Sorry to hear about the " dilemma " between Aranesp and

waiting for two units of blood. That is craziness!

Beth

[ ] (unknown)

 

Hi, anyone ever have bursitis?  In the knee?  I thought it may be arthritis,

but it came on so suddenly, and was very painful.  Saw my rheumatologist today,

got a shot of something he said was more powerful than cortisone,  depo

something.  Didn't hurt as badly as I thought it would, and I sure hope it

works.  Also got labs today, they were all good too, the hgb is 10 something,

now would be a good time to get Aranesp shots, but medicare said I have to pay

$1,700/shot.  So, will wait til it gets down to 8 and go for two units of

blood, costing $3,700.00. 

Besides not feeling well, I believe Lottie is at MDACC today and tomorrow.

Here's wishing her well, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08

- CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

[Guest guest]

Bobby,

It is called depo medrol.

[Guest guest]

lol thanks!

From: hdhepper1 <grisley6315@...>

Subject: (unknown)

Hepatitis C

Date: Wednesday, July 22, 2009, 1:26 AM

 

This Troll has been banned!

>

>

> http://docs. google.com/ View?id=dwdc269_ 51cs9tzpvf

>

[Guest guest]

where is the best place to get " probiotics "

From: hdhepper1 <grisley6315@...>

Subject: (unknown)

Hepatitis C

Date: Wednesday, July 22, 2009, 1:26 AM

 

This Troll has been banned!

>

>

> http://docs. google.com/ View?id=dwdc269_ 51cs9tzpvf

>

[Guest guest]

the health food store

(unknown)

Hepatitis C

Date: Wednesday, July 22, 2009, 1:26 AM

This Troll has been banned!

>

>

> http://docs. google.com/ View?id=dwdc269_ 51cs9tzpvf

>

[Guest guest]

Wow, that is so very thoughtful you would share that experience with us. It really helps us all to learn how LDN affects real people.

Thank you very very much.

kind regards david

[low dose naltrexone] (unknown)

I am taking LDN specifically for depression. I was given a tenative diagnosis of MS, but had already started looking into LDN in the hope that it could help with the crippling depression and fatigue I was suffering. It has really helped. I am getting my life back. I've been on LDN for over a month. I started at 3mg and it was too much so I dropped down to 1.5mg and have gradually titered up in .25mg increments. I'm now at 2.25mg. I have had some discomfort with the endorphin rushes that feel kind of like caffeine induced anxiety for a few days each time I increase my dose, but that's about it. I will continue with the LDN. It has done more for me than any SSRI has and without the awful anxiety attacks they caused.

I would like to add that I think it's important to see a therapist to help change the thought process that comes with depression, but I doubt therapy would have helped me much without some medication, and SSRI's and SDRI's did not help me. Wellbutrin ( a SDNRI ) has been the only antidepressant that I was able to take without serious anxiety issues, but I had an allergic reaction to it.

Hope this helps.

Regina

[Guest guest]

I am interested in your schedule of increasing only 0.25 mg

at a time. I find it interesting that even with such a small

increase you still notice some side effects. I have a few

questions if you have time.

When do you take your LDN?

How many hours does the anxiety last?

What time of day do you get the anxiety?

How long do you stay on one dose before you increase your dose?

How long did you stay on 3.0 mg before dropping down to 1.5mg?

Thanks,

Garnet

Regina Bolyard wrote:

>

>

> I am taking LDN specifically for depression. I was given a tenative

> diagnosis of MS, but had already started looking into LDN in the hope

> that it could help with the crippling depression and fatigue I was

> suffering. It has really helped. I am getting my life back. I've been on

> LDN for over a month. I started at 3mg and it was too much so I dropped

> down to 1.5mg and have gradually titered up in .25mg increments. I'm now

> at 2.25mg. I have had some discomfort with the endorphin rushes that

> feel kind of like caffeine induced anxiety for a few days each time I

> increase my dose, but that's about it. I will continue with the LDN.

> It has done more for me than any SSRI has and without the awful anxiety

> attacks they caused.

>

> I would like to add that I think it's important to see a therapist to

> help change the thought process that comes with depression, but I doubt

> therapy would have helped me much without some medication, and SSRI's

> and SDRI's did not help me. Wellbutrin ( a SDNRI ) has been the only

> antidepressant that I was able to take without serious anxiety issues,

> but I had an allergic reaction to it.

>

> Hope this helps.

>

> Regina

>

>

>

[Guest guest]

Sweating is strongly controlled by ones genes. Some sweat all over some only on the back etc.See if you can find a copy of a classic Japanese book: Perspiration by Kuno and read it. CE Grim MDOn Jul 26, 2009, at 9:52 AM, Hidy wrote: Finally! Someone who shares one of my traits,,,,I do not sweat (or perspire as some would prefer me to call it). People around me may be dripping buckets of salty water, but not me. But the whole temperature regulation system in my body is inoperable as I can never get warm either, and even though I may feel hot I do not sweat. I have been on spiro since 1977 - increasing doses - and since I started on it (for low K mostly but other things also) my lab work when it comes back with everything in normal range except the aldosterone level I am considered to be "in control." All other things that occur to me (like not sweating, or dizzy spells) are just considered side effects of my "unexplainable condition." Any sweating I do is extremely minimal and occurs only in "sequestered areas" - creases in the groin, under the breasts, and occasionally the forehead and/or hairline at the upper neck. I do have to keep the areas of the breasts and the groins well cleaned and dry to avoid rashes and fungi.

[Guest guest]

That's interesting, because I too also get colder than most other people around me. In the heat I sweat very little, if at all, but quickly get weak and nauseated.

From: Hidy <hidypup@...>Subject: (unknown)hyperaldosteronism Date: Sunday, July 26, 2009, 2:52 PM

Finally! Someone who shares one of my traits,,,,I do not sweat (or perspire as some would prefer me to call it). People around me may be dripping buckets of salty water, but not me. But the whole temperature regulation system in my body is inoperable as I can never get warm either, and even though I may feel hot I do not sweat. I have been on spiro since 1977 - increasing doses - and since I started on it (for low K mostly but other things also) my lab work when it comes back with everything in normal range except the aldosterone level I am considered to be "in control." All other things that occur to me (like not sweating, or dizzy spells) are just considered side effects of my "unexplainable condition."

Any sweating I do is extremely minimal and occurs only in "sequestered areas" - creases in the groin, under the breasts, and occasionally the forehead and/or hairline at the upper neck. I do have to keep the areas of the breasts and the groins well cleaned and dry to avoid rashes and fungi.

[Guest guest]

, it is not a religious group but religious. Belief is an important component of many peoples being. They could not. Be themselves if that part were removed. Since this problem fits squarely into their prophecies and philosophies it is natural they would express themselves. Even when their ideas are not my own I find them interesting. I like to receive info from a lot of sources.AnnSent from my Verizon Wireless BlackBerryFrom: Mac Date: Thu, 30 Jul 2009 08:58:17 -0700 (PDT)<no-forced-vaccination >Subject: (unknown) Wow, I wasn't aware that this was a religious group.

[Guest guest]

Hi Dave - If I was in your shoes, if you have not been tested to

see if you have candida antibodies, I would get that test done through Genova

Diagnostics, this is a beast of a disease and needs to be got rid of before

starting thyroid hormone replacement. Read about the association between having

candida and hypothyroidism in our files, and then take it from there.

If there is no candida, I would try a course of HC stopping your

T3 for 7 days and increasing your NAE. (Again, look in our FILES under the Adrenal

FOLDER and look at 'Cortisone Deficiency' and read what Dr Hertoghe has

to say. Also, there is information from Drs' Peatfield and from Jefferies.

Below is a chart on starting HC and how much to take from Hertoghe. Don't stop

your T3 however until you have received the HC in the post.

.

MEN

DEFICIENCY

PRODUCT

7.8am

Noon

4.0pm

Before

bed

Borderline

HYDROCORTISONE

15mg

5mg

Mild

20mg

10mg

Moderate

25mg

10mg

5mg

Severe to total

30mg

10mg

10mg

5mg

Bordeline

PREDNISOLONE

2.5mg

Mild

5mg

Moderate

6-7.5mg

Borderline

METYLPREDNISOLONE

2mg

Mild

4mg

Moderate

6-8mg

WOMEN

Borderline

HYDROCORTISONE

10mg

5mg

Mild

10mg

10mg

Moderate

15mg

10mg

5mg

Severe to total

20mg

10mg

5mg

5mg

Borderline

PREDNISOLONE

2.5mg

Mild

5mg

Moderate

7.5mg

Borderline

METYLPREDNISOLONE

2mg

Mild

4mg

Moderate

6-8mg

Hirsutism

DEXAMETHASONE

0.1-0.5 mg

Both of your posts were very useful and I thank you

kindly.

I should have mentioned initially, I have had both a short

synacthen test and an a.m serum cortisol prior to commencing testosterone

replacement therapy. The short synacthen came back

'normal'. Not a pleasant experience I must admit. I could not get

a copy of the results. The serum cortisol test revealed the

following:

572 nmol /L (218 - 876)

Additionally, prior to commencing testosterone the

following were also taken:

B12: 1017 ng/L (190 - 910)

Folate: >20.0 (2.5 - 20.0)

Ferritin: 253 ng/l 22 - 322

I habitually supplement with D3 at 3,000 IU daily. I

have done so for quite some time. I also take supplemental Zinc 30mg in

the am, and 600mg magnesium citrate in the pm.

My lack of testosterone is indeed secondary; hypogonadotropic

hypogonadism (quite the mouthful). My LH and FSH are low / normal with very

low testosterone production. I have been on treatment for 12 months.

I self administer (with prescription) a testosterone injection,

100mg, in a divided dose throughout the week. My oestradiol is well

controlled. I do take an aromatase inhibitor for this: arimidex, 0.25mg every

other day. I also have HCG (pregnyl) 150 IU every other day too,

so I do not take DHEA. I follow the treatment protocols for this

of Dr Crissler, a US testosterone replacement specialist: www.allthingsmale.com

My testosterone treatment has been excellent thus

far to be honest. I have 3 monthly evaulations with my

endoprat (lol) for the testosterone, FBC and PSA routinely

performed. The testosterone has made a very real and large impact on my

quality of life, but something is still lacking. I have regained sexual

functioning however fatigue and other hypothyroid symptoms persist.

So, do we feel that I should

1. Discontinue the T3

2. Commence hydrocortisone or increrase NAX?

3. re start the t3 at a later date?

I would like to sincerley thank you both. This

has been such a rollercoaster and I would like to do what I can to address

these problems I have. I am still a young guy and would like to put all

this past me.

Thanks everyone,

Dave

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.392 / Virus Database: 270.13.38/2274 - Release Date: 08/02/09

17:56:00

[Guest guest]

Sheila,

Thank you so much for this. I will order candida test on your recommendation

and commence the hydrocortisone. I will also contact Dr P and speak to him

about this.

I will also check those files. Your help is very, very appreciated.

Dave

[Guest guest]

,

All that you have is your name and this 1st E-mail you send to the board,so that is why no responded to it I am sure.

Suzanne

In a message dated 08/03/09 08:44:10 Pacific Daylight Time, denisef822@... writes:

[Guest guest]

Thats interesting.

From: Angelo <tommybad238@...>Subject: [ ] (unknown) Date: Monday, August 3, 2009, 7:46 PM

I buy organic bulk milk thistle seed (1 lb), I run it through a coffee grinder to make one of my numerous teas.. So if you ever find out the potency of one seed let me know.

I read somewhere that milk thistle in tea form doesn't work. It's like when you add milk to green tea you lose the polyphenols or EGCG in it. The silymarin doesn't get absorbed. Research it and I'm sure you'll find it.

[Guest guest]

Can you share what your results have been

From our home to your home, we pray and speak blessings, success and prosperity.

Dr. Walter L. Scheu, Sr. - Pastor

[snip]

[snip]

From: Angelo <tommybad238>

Subject: [ ] (unknown)

Date: Monday, August 3, 2009, 7:46 PM

I buy organic bulk milk thistle seed (1 lb), I run it through a coffee grinder

to make one of my numerous teas.. So if you ever find out the potency of one

seed let me know. 

I read somewhere that milk thistle in tea form doesn't work. It's like when you

add milk to green tea you lose the polyphenols or EGCG in it. The silymarin

doesn't get absorbed. Research it and I'm sure you'll find it.

[Guest guest]

Oh Mini,

I am so sorry to hear about being in the psyph hospital. Been there before and it ain't fun! I take Cymbalta, for my depression with fibro, and Bursbur for anxiety. I also take Hydroxyzpam. If I get overly anxious. I don't take it every day though. Hopefully they can help you. I was on Lyrica for a while and didn't think it did anything for me but put add fat on my body. I tapered off the stopped taking it all together. Prayers to the Creator for them to find you some relief.

 Huggs

Cyn Boyd

Blue Lark Sakima

Cedar Rapids, Iowa

-- (unknown)

Just spent 6 days in the psych hospital. With no meds for 72 hours. Back on 20 mg Lexapro.

They suggested Cymbalto or Lyrica. I refused.

Depression just attacked and I was powerless.

Suppose to see a psychiatrist next week who will deal with fibro/depression.

Dang this is hard some days/months/years.

HELP!Southern Comfort in Atlanta but going home to Florida Saturday.

MIMI

"Weaved Topography"

Tut: © Elly

Art: Group Share

Font: Casual Contact

Proud Creator For :*A_Journey_into_our_Creations*

*CoolCreations*

*Wizard and Night Owl*

~*~ProudOwner~*~

[Guest guest]

- we'll see what Dr. Furman says but my understanding is that CVP+R is in the same league as CHOP+R, with one less alkylating ingredient. Not often used in basic CLL .

In a message dated 8/7/2009 10:39:09 A.M. Eastern Daylight Time, pucluck@... writes:

Curious , about R-CVP. for first treatment. Dodn't know and havn'theard much about. Would gladly appreiate any input, especillyDr.Furmans. thanks everyone. Puchtel

[Guest guest]

thanks Angelo... have a link to wherever you got that from?

________________________________

From:

[mailto: ] On Behalf Of Angelo

Sent: Friday, August 07, 2009 1:04 AM

Subject: [ ] (unknown)

How to use silymarin

Opt for a standardized silymarin product, extracted from the seeds

(not other parts) of milk thistle. It should be standardized to 70 percent

to 80 percent silymarin. The active constituents of silymarin are

concentrated and therefore more potent, compared with whole milk thistle.

Because silymarin is not water soluble, do not attempt to consume it as a

tea.

[Guest guest]

??????????

Sorry, but I am not getting alot of the original posts from the group - but I am

totally lost on this one! Help me!!  in SC

ltdavis_jrdavis@...

From: G McCarrick <siofra520@...>

Subject: [ ] (unknown)

Date: Saturday, August 8, 2009, 6:40 PM

 

How about having him ask a friend to go too?? and in this financally horrible

year I wouldn't be hesitant to say,,,we  are going to  such and such park and

would like to invite _EDGAR to go with us if he could pay for his ticket in and

park momentos...and we of course would buy the meals ( and thats costly enough).

We did that one year when we were going to Myrtle beach with a teanager over

Easter week no less!!....only we paid for everything but the momentos...(

different year financially! )...and my daughter was never at a loss for

something to do or someone to do it with......and my son came over from his Air

Force base for the week..so that covered them going out at night without an

adult. at 16!  ..if you can talk your brother in to going you can go with

him!!....... everyone had a great time and there was no one was wandering around

saying I bored! or worst,,what do we do next mom????  Mom is going to sit under

that umbrella on the beach and read a good book!!..just me 2 cents! ...jenna

[Guest guest]

,

Sometimes people send private mail to the group by mistake.

To see what mail has made it to the group, you can always visit:

/

Not an MD

On Sat, Aug 8, 2009 at 6:10 PM, <ltdavis_jrdavis@...> wrote:

> ??????????

> Sorry, but I am not getting alot of the original posts from the group - but I

am totally lost on this one! Help me!!  in SC

>

>

[Guest guest]

we travel thata way often, maybe one day we can make a meeting...we live in CANADAmy son is 11 and the only one with BPES Tonikka & ChrisEDMONTON CANADA On 8-Aug-09, at 4:40 PM, bbygirl1623 wrote:I live in the Washington, dc metro area (land). I was wondering if anyone with bpes or that has a child with bpes lives in the same area. My daughter has bpes and I would love to meet someone else with it and talk about their experience.

[Guest guest]

Hi. I actually live in New Jersey, but my sister lives in Potomac, land, which is a bout 7 miles outside of DC. My son, Andy is 5 years old and has BPES. I will be in land visiting my sister this weekend (August 15th) if you are interested in talking. How old is your daughter? Has she had surgery before?Best, Debbie FehlI live in the Washington, dc metro area (land). I was wondering if anyone with bpes or that has a child with bpes lives in the same area. My daughter has bpes and I would love to meet someone else with it and talk about their experience.

[Guest guest]

I live in No Virginia. My daughter just turned 5, we both have it.

contact me off group if you want bethgordon03@...

From: bbygirl1623 <bbygirl1623@...>Subject: blepharophimosis (unknown)blepharophimosis@...Date: Saturday, August 8, 2009, 6:40 PM

I live in the Washington, dc metro area (land). I was wondering if anyone with bpes or that has a child with bpes lives in the same area. My daughter has bpes and I would love to meet someone else with it and talk about their experience.

[Guest guest]

my son aedan ( 7 yrs old ) and our family live in new york city ny, i have a sister down in the bethesda, md area, maybe we all could get together some time, timothy