Lurker

September 23, 1999

Hi Ed,

I am O too and have been on the diet for 41/2 months. Have lost no weight

at all, but feel 100% better. The elimination of dairy and wheat will take

care of what Echinacea was doing.

I eat only the beneficial foods except in the fruit category....I do eat

neutral foods like grapes and bananas. But my weight is staying on. I

have six kids and after the last, I only weighed 125 lbs. (I am 5'8 " ) so I

was skinny. But after my divorce, I started gaining about 2 lbs a month and

the doctors said there was nothing wrong with me. My blood tested as that

of a 22 year old body builder according to my doctor. So even though I am

now plump, not fat (as my children assure me, lol), and not loosing weight,

I am staying on the diet for health reasons alone. It is great and we have

the advantage of lean red meats and shell fish, so other than wheat and yes

the ever so much missed coffee, our diet isn't that bad, and we can have

sweet potatoes. Hey when I eliminated coffee and replaced it with green

and peppermint tea, I didn't get the bad headaches or shakes, and I drank

two to three pots of coffeee a day. I have to keep up with my crew here.

So I was surprised at that. But stick with the diet even if nothing happens

with your weight and you won't be sorry.

Debbie

Lurker

> From: edvanp@...

>

> Greetings everyone-

> I've been catching up on all the posts the last few days. I enjoy reading

what

> everyone has to say. I'm a 34 year old male with 0 neg blood (the local

blood bank loves me . My last year has been spent recovering from Knee

> surgery and then elbow surgery to repair a ruptured biceps tendon.

Needless to

> say, I added 15-20 lbs that I'm trying to lose. I've modified my diet

last

> week when I got the book. My biggest problems were potatoes, peanut

butter,

> bread and coffee. Now that I've modified my diet, I'm feeling better, but

I

> felt pretty good to begin with. I purchased Kelp pills to help with the

> thryoid and I also bought a bottle of Olive Leaf pills based on what was

> written earlier. Will there be any noticeable effect from the Olive Leaf

pills

> that are suppose to kill parasites? I'm going to keep doing this diet for

a

> month and see if I notice any change. One thing I read was that we need

good

> exercise. Well, I lift weights 2-3 times per week and play/coach hockey,

so I

> think I'm covered with that. If I may ask, what does the Bladderwrack and

5-

> HTP help? I was a little disappointed to see that I'm suppose to avoid

> Echinacea. I use this a lot during the allergy season, but maybe the near

> elmination of wheat will help? Thanks for listening!

>

> Ed

>

> >

September 23, 1999

I do believe Bladderwrack is for your thyroid and the 5-HTP is a seratonin

reuptake inhibitor (something like that). I use it as an antidepressant as

I have Fibromyalgia but it has the benefit also of helping to reduce

carbohydrate cravings. Jeanie

> From: edvanp@...

>

> Greetings everyone-

> I've been catching up on all the posts the last few days. I enjoy reading

what

> everyone has to say. I'm a 34 year old male with 0 neg blood (the local

blood bank loves me . My last year has been spent recovering from Knee

> surgery and then elbow surgery to repair a ruptured biceps tendon.

Needless to

> say, I added 15-20 lbs that I'm trying to lose. I've modified my diet

last

> week when I got the book. My biggest problems were potatoes, peanut

butter,

> bread and coffee. Now that I've modified my diet, I'm feeling better, but

I

> felt pretty good to begin with. I purchased Kelp pills to help with the

> thryoid and I also bought a bottle of Olive Leaf pills based on what was

> written earlier. Will there be any noticeable effect from the Olive Leaf

pills

> that are suppose to kill parasites? I'm going to keep doing this diet for

a

> month and see if I notice any change. One thing I read was that we need

good

> exercise. Well, I lift weights 2-3 times per week and play/coach hockey,

so I

> think I'm covered with that. If I may ask, what does the Bladderwrack and

5-

> HTP help? I was a little disappointed to see that I'm suppose to avoid

> Echinacea. I use this a lot during the allergy season, but maybe the near

> elmination of wheat will help? Thanks for listening!

>

> Ed

>

> >

September 23, 1999

Hi Debbie - I have a husband who is very addicted to coffee, and was

wondering how the green tea and peppermint tea helped you off the coffee.

He has tried several times to quit, but its hard. He is a bit attention

deficit and is an A who it is supposed to be beneficial for. However, we

are LDS (Mormon) and its not supposed to be part of our diets. He is also a

sodaholic. I know there are healthier alternatives. Anyway - thanks for

the advice. Jeanie

> From: " Debbie McBurney " <debmcb@...>

>

> Hi Ed,

> I am O too and have been on the diet for 41/2 months. Have lost no weight

> at all, but feel 100% better. The elimination of dairy and wheat will

take

> care of what Echinacea was doing.

>

> I eat only the beneficial foods except in the fruit category....I do eat

> neutral foods like grapes and bananas. But my weight is staying on. I

> have six kids and after the last, I only weighed 125 lbs. (I am 5'8 " ) so

I

> was skinny. But after my divorce, I started gaining about 2 lbs a month

and

> the doctors said there was nothing wrong with me. My blood tested as that

> of a 22 year old body builder according to my doctor. So even though I am

> now plump, not fat (as my children assure me, lol), and not loosing

weight,

> I am staying on the diet for health reasons alone. It is great and we

have

> the advantage of lean red meats and shell fish, so other than wheat and

yes

> the ever so much missed coffee, our diet isn't that bad, and we can have

> sweet potatoes. Hey when I eliminated coffee and replaced it with green

> and peppermint tea, I didn't get the bad headaches or shakes, and I drank

> two to three pots of coffeee a day. I have to keep up with my crew here.

> So I was surprised at that. But stick with the diet even if nothing

happens

> with your weight and you won't be sorry.

> Debbie

> Lurker

>

> > From: edvanp@...

> >

> > Greetings everyone-

> > I've been catching up on all the posts the last few days. I enjoy

reading

> what

> > everyone has to say. I'm a 34 year old male with 0 neg blood (the

local

> blood bank loves me . My last year has been spent recovering from Knee

> > surgery and then elbow surgery to repair a ruptured biceps tendon.

> Needless to

> > say, I added 15-20 lbs that I'm trying to lose. I've modified my diet

> last

> > week when I got the book. My biggest problems were potatoes, peanut

> butter,

> > bread and coffee. Now that I've modified my diet, I'm feeling better,

but

> I

> > felt pretty good to begin with. I purchased Kelp pills to help with the

> > thryoid and I also bought a bottle of Olive Leaf pills based on what was

> > written earlier. Will there be any noticeable effect from the Olive

Leaf

> pills

> > that are suppose to kill parasites? I'm going to keep doing this diet

for

> a

> > month and see if I notice any change. One thing I read was that we need

> good

> > exercise. Well, I lift weights 2-3 times per week and play/coach

hockey,

> so I

> > think I'm covered with that. If I may ask, what does the Bladderwrack

and

> 5-

> > HTP help? I was a little disappointed to see that I'm suppose to avoid

> > Echinacea. I use this a lot during the allergy season, but maybe the

near

> > elmination of wheat will help? Thanks for listening!

> >

> > Ed

> >

> > >

November 19, 2007

I guess I fit into the lurker catagory since I've just been building a

knowledge base on PA for a number of weeks now. I haven't yet seen a

rheumy although I have an appointment next month. My GP is guessing

based on my symptoms and limited blood work that I have PA. I've had P

for about 10-12 years now. Really limited to the scalp in patchy

locations. About 2-3 months ago I got swelling in one ankle that I

though was a sports injury until I noticed one smaller toe on each foot

swelling and causing me a decent amount of discomfort. After ruling

out Gout he told me to see a reumy as everything was pointing to PA.

He put me on Prednisone which I've been on either 10 or 5 mg for about

6 weeks now. It worked and my swelling is gone and there is no pain

whatsoever. Although I find that when my current prescription runs out

the swelling tends to come back until I call to get it renewed.

So my point and question is ... I'm 32 and doing research on PA tends

to get a new " recipient " a bit overwhelmed and a bit nervous. It just

seems like such a monster of a disease. I understand that PA effects

each individual differently but does anyone have any knowledge base on

whether or not I can hope that my exposure is limited? Is there hope

for a younger guy that wants to one day (when I have them) be able to

run with my children in the back yard and teach them baseball, etc?

This group and the semi-diagnosis that I have PA has really changed my

perspective on life and I appreciate all of you sharing your

experiences! It helps a " newbe " quite a bit.

November 20, 2007

Hi " Fire " ,

You can have a normal life. I'm not sure of your age but, I'm 47 and

have been diagnosed for 5+ years, though I had symptoms 2 years prior

to being diagnosed.

Methotrexate, Enbrel, Humira and possibly other drugs can aid in making

your life fairly normal.

I take 10mg of MTX a week and that allows me to be 99% normal. Before

taking MTX I had multiple swollen joints, constant pain & was barely

able to walk.

If you don't have children and are considering having them, talk to

your Rheumy about whatever drug you might choose mentioning your plan

to have children, as that might impact and/or limit your choices.

Stay Well,

February 13, 2012

Hi! I will keep him in my thoughts. I understand what you are saying...my 14 yr

old also CVID (as well as my two youngest) and they are all on IVIG monthly and

have been for years. My daughter will NOT tell her boyfriend about the CVID or

the IVIG. I know he must wonder why she disappears to the hospital for a day

every month, but she just says something vague like, " its for my asthma "

(apparently, its ok to have asthma, but not cvid?) Its hard bc as they are

getting older, they have to be able to make these decisions for themselves...but

its hard to watch:(

Over the years, my kids have had different reactions to IVIG. I would ask your

nurse to run it very slowly, since its his first in several years, and also ask

your dr about premeds, such as benedryl, tylenol, or a steroid drip (my youngest

son has to do this prior to every infusion). Things like this can really help

curb a reaction. Also, remind your son to drink a lot this week, its best if

he's well hydrated before he starts his infusion.

good luck,

valarie

mom to 3 w/cvid

>

> Good morning Group-

> I am what you would call a 'lurker.' I read all your posts/ replies and try

to glean information/ insight. I know nobody knows who I am or my story but I

think it's safe to assume that we all have something in common and we all could

use some prayers/ advice/ support from one another.

> My son was diagnosed with PID when he was 6. He received IVIG every three

weeks until he was around 10 when we 'trialed' him off. He failed and was

restarted on the every three weeks protocal. Unfortunately, when he was

restarted, his little body went into almost a shock state. His eyes got really

glassy, he couldn't talk, he pretty much passed out. The IV was stopped until

he came around and it was deemed necessary to stop the infusion for the day.

When the nurse returned three weeks later, he tolerated it quite well. He

continued to receive the IVIG without any problems and decided to 'trial' him

off again in March of 2010. He was doing WONDERUL until the fall of 2011 when

he received 4 sinus infections in a six month period. His immunologist

performed post pneumovax titers and re-assesed his IGG levels and was foud to

have fallen dramatically. His pneumovax titers all fell out of the 'responding'

range and his IGG fell from 530 to 415 in less than a month.

> With that being said, his first IVIG in almost two years is scheduled for this

Friday and I am a total mess. He is 18 now, by the way. I remember quite

vividly how he responded when he was restarted years ago and I am so afraid he

will have the same response. Thankfully, he will have the same nurse he has had

since he started at age 6 but that doesn't put my fears to rest. The only

saving grace is that my son doesn't remember what happened.

> With that being said, would you please keep us in your prayers this Friday as

he is started back on is IVIG. I KNOW it's in his best interest. He is NOT

happy at all about it; he doesn't feel 'normal' when he has to get IVIG every 3

weeks. He really struggles with it. He won't tell his G/F or anyone else. I

can't imagine how he feels being 18 and facing something like this.

> He is by far the bravest young man I know!

> Thank you in advance for your prayers!

> Molly

>

February 13, 2012

I too have a teenager that refuses to tell his GF and even his best friend does

not know. It is hard to know how to help him since he is still in such denial.

He gets SubQ which means we can keep it pretty quiet since he does not have to

go anywhere. I worry about his willingness to continue it after he turns 18. I

have recently begun to step back on purpose with his Drs. and also will

insisting on his infusions. He sometimes gets them late and I am not saying

anything. I have notified his Drs but there is little I can do to make him. I

feel that the natural consequences of feeling bad and getting sick will

hopefully help him to begin doing them on time. He does get sick more often. I

had him come to me for the first time last week and say MOM I NEED MY GAMMA. I

feel it is better to have him mess up now when I can watch and help him than to

wait and have him try this when he is 18. He is a LONG way from being willing to

infuse himself. I feel your pain and worry. Barbie. Lucas CVID SUB Q weekly

From: osdbmom@...

Date: Mon, 13 Feb 2012 15:38:38 +0000

Subject: Re: Lurker

Hi! I will keep him in my thoughts. I understand what you are saying...my

14 yr old also CVID (as well as my two youngest) and they are all on IVIG

monthly and have been for years. My daughter will NOT tell her boyfriend about

the CVID or the IVIG. I know he must wonder why she disappears to the hospital

for a day every month, but she just says something vague like, " its for my

asthma " (apparently, its ok to have asthma, but not cvid?) Its hard bc as they

are getting older, they have to be able to make these decisions for

themselves...but its hard to watch:(