Introduction

[Guest guest]

Sharon, None of us likes what the camera shows....but what a great

motivator!! Lean.

[Guest guest]

Sharon,

Welcome aboard! All are welcome here!

~Laury

[Guest guest]

Welcome Lori,

I am glad you found our group. We have a wonderful group that will be here

for whatever you may need.

As far as your question about appetite. It could be a toddler thing, or

symptomatic of a PID. Cassie was a terrible eater. They had her on medicine

to increase her appetite with no luck. She is just small (33 lbs). She is

now 5 1/2.

I hope you find all the information you need. Take care and good luck.

Belinda Rose,

Mom to Cassie, testing right now, asthma, chronic sinusitis

[Guest guest]

Hello Lori!

My son Kody is also small, 36 pounds at 42 inches tall, and very pale with

the dark circles under his eyes. The doctors tell me the circles have nothing

to do with how much sleep he gets, they are allergic shiners. I guess common

with kids that have allergies. Interesting that your daughter didn't respond

to those control tests on her arm. Kody doesn't respond to the control tests

for allergies (antihistamines). No one knows why. Kody also goes through

periods where he doesn't eat much. Then he'll eat you out of house and home

for a couple of days. I try to offer his favorite foods frequently,

fortunately, he isn't a picky eater, he just doesn't eat a lot. And he'll eat

anything with blue cheese dressing on it!

Diane, Mom to Kody age 4, IgG diff. 2 & 3, asthma, and unknown immune problems

[Guest guest]

Belinda,

What medication did the docs try on Cassie to increase

appetite? Did it work?

Jan

rrdgtchr@... wrote:

> Welcome Lori,

>

> I am glad you found our group. We have a wonderful group that will be here

> for whatever you may need.

>

> As far as your question about appetite. It could be a toddler thing, or

> symptomatic of a PID. Cassie was a terrible eater. They had her on medicine

> to increase her appetite with no luck. She is just small (33 lbs). She is

> now 5 1/2.

>

> I hope you find all the information you need. Take care and good luck.

>

> Belinda Rose,

> Mom to Cassie, testing right now, asthma, chronic sinusitis

>

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

> Win $1000 this Friday!

> http://click./1/2860/7/_/480115/_/956197268/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Jan,

They tried her on a drug called Periactin. It did not really work for her.

If she did not want to eat, she would gag if the issue was forced. We

finally just gave up. She is quite small for her age, but she is still

growing along the same curve (5% on weight) so I really am not too concerned

right now. I think I would be more concerned if she started falling off the

curve again. She did that and that's what was a concern with the doctors

initially. She was first diagnosed with " failure to thrive " before all the

immune issues came to play. But, now we have tried many other methods to get

her to put on weight, but she is so picky we have not had any luck. She

seems to pick up on any altered taste to the food and she will not eat it.

We have to be so careful. While I am on the subject, does anyone know of

something I might try that might help? She cannot tolerate milk products,

but if there is other sources, I would love to hear about them. Thanks again.

Belinda Rose,

Mom to Cassie, 5yr old little goose

[Guest guest]

Jan,

Welcome to the group. You will find a wealth of info. If you need anything,

just ask. We are from Corpus Christi, TX. And I have heard many wonderful

things about the medical facilities in Dallas. As a matter of fact, I spoke

with many nurses from the Children's Hospital about the product " Numby. "

They were very helpful.

Belinda Rose,

Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

Jan,

What enzymes is Ben taking? And what is Polycose? I have not really looked

into the issue, but it can't hurt. Cassie sure needs to put on weight. She

is at 33 lbs. and is now 5 1/2. But, she has put on quite a bit in the last

couple of years. She was 18 lbs until about 2 yrs. old and was all skin and

bone.

Hope everyone has a wonderful holiday.

Belinda Rose

[Guest guest]

Lori,

Thanks for the info. We did try Carnation, but Cassie has a tough time with

milk products. I have not tried it for a long time, I might look into it

again. We tried the pediasures and she would literally gag as it went down.

Her gag reflex has gotten better with time. She has done really great with

the Lactaid products. I might start with a high calorie product to add to

the milk in her cereals. I think she has put on all her weight with bean

taquitoes (a south TX. favorite) and chicken nuggets. I too wish I had that

problem of putting on weight. (LOL).

Belinda Rose

[Guest guest]

Jan,

I meant to ask you the last post, What is Shwachman's? Never heard of it.

It is a metabolic disorder?

Belinda Rose,

Mom to Cassie, 5 year old " little goose "

[Guest guest]

Thanks Lori,

I am going to look for it this weekend. Rice Dream Frozen Dessert, the name

even sounds good. Cassie loves things that are cold, i.e.. popsicle, frozen

fruits.

Belinda Rose,

[Guest guest]

Hi Everyone,

I'm Jan. Mom to age 9 with asthma and allergies @

to Ben age 12 with Hypogammaglobulinemia or CVID

and Shwachman's Syndrome. Ben has taken IVIG

since the day of his diagnosis at Baylor Hospital in Dallas, TX.

We now use Children's Hospital in Dallas. We have never been

given much info and are just now finding out about your group.

Jan

mew wrote:

> Belinda,

> What medication did the docs try on Cassie to increase

> appetite? Did it work?

> Jan

>

> rrdgtchr@... wrote:

>

> > Welcome Lori,

> >

> > I am glad you found our group. We have a wonderful group that will be here

> > for whatever you may need.

> >

> > As far as your question about appetite. It could be a toddler thing, or

> > symptomatic of a PID. Cassie was a terrible eater. They had her on

medicine

> > to increase her appetite with no luck. She is just small (33 lbs). She is

> > now 5 1/2.

> >

> > I hope you find all the information you need. Take care and good luck.

> >

> > Belinda Rose,

> > Mom to Cassie, testing right now, asthma, chronic sinusitis

> >

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

> > Win $1000 this Friday!

> > http://click./1/2860/7/_/480115/_/956197268/

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

> >

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

>

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

> Your high school sweetheart-where is he now? With 4.4 million alumni

> already registered at Classmates.com, there's a good chance you'll

> find her here. Visit your online high school class reunion at:

> http://click./1/3139/7/_/480115/_/956254450/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Belinda,

My Ben tried Periactin 2 yrs ago and it made him sleepy

and grumpy and didn't work on the appetite. We tried again

last June and at the 7.5 dose he slept in the day, cried , and

was irritable. We cut the dose way back and slowly worked up

to the 7.5 morning and night and it worked! We were desperate

to get some weight on him or we might not have persued it. The

doc was unhappy with his wt. We homeschooled this year and

fed him when he was hungry and he gained lots of wt. We

actually use the generic. He never had any appetite, gagged on

all textures even ice crystals in ice- cream, and vomited many

times a day. He's come a long way! We have used Polycose

a carbohydrate you add to drinks like kool-aid (not soda).

I also encourage high calorie juices like grape and give

3 snacks a day including bedtime which they can't run off

the calories. Ben can't keep down large quantities at once and

eats slowly. He has to take enzymes to digest food. Thanks for

the info. We live in the TX Panhandle.

Jan

rrdgtchr@... wrote:

> Jan,

>

> They tried her on a drug called Periactin. It did not really work for her.

> If she did not want to eat, she would gag if the issue was forced. We

> finally just gave up. She is quite small for her age, but she is still

> growing along the same curve (5% on weight) so I really am not too concerned

> right now. I think I would be more concerned if she started falling off the

> curve again. She did that and that's what was a concern with the doctors

> initially. She was first diagnosed with " failure to thrive " before all the

> immune issues came to play. But, now we have tried many other methods to get

> her to put on weight, but she is so picky we have not had any luck. She

> seems to pick up on any altered taste to the food and she will not eat it.

> We have to be so careful. While I am on the subject, does anyone know of

> something I might try that might help? She cannot tolerate milk products,

> but if there is other sources, I would love to hear about them. Thanks again.

>

> Belinda Rose,

> Mom to Cassie, 5yr old little goose

>

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

> Enjoy the award-winning journalism of The New York Times with

> convenient home delivery. And for a limited time, get 50% off for the

> first 8 weeks by subscribing. Pay by credit card and receive an

> additional 4 weeks at this low introductory rate.

> http://click./1/3102/7/_/480115/_/956277788/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Belinda Rose-

Have you tried using carnation instant breakfast and

ice cream to make a milkshake? It is delicious, has

some nutritional value and is great for putting on

weight. We use it alot in the hospital for our

debilitated patients that need to gain weight. (Wish

I had that problem, LOL). It helped put weight on Em

after her bout of meningitis and then pneumonia. Good

luck and God bless.

Lori mom to Walt(17!), Adam (11), and ane (3.8

PVL, hearing impaired and ?CVID?)

__________________________________________________

[Guest guest]

Jan,

Do you (or did you) see Dr. Wasserman in Dallas (when he was at Baylor)?

I am from Dallas, and I know for a while he was the only ped

immunologist in the area. Who do you see at Childrens? I seem to

remember that Dr. W stopped seeing patients at Childrens and moved to

the Childrens Hospital at Medical City... but I could be wrong. I was

just trying to see if there's another ped immunologist in town now --

I've been in St. Louis for a couple of years and am out of the loop.

Thanks!

[Guest guest]

Belinda-

Have you ever tasted Pediasure?! I would gag too!!!

Here is a suggestion, the health food store carries

something called Rice Dream Frozen Dessert. It is

made from rice milk (no dairy). It is high in fat and

calories but it actually tasted good. There is

probably milk product in the carnation instant

breakfast, so maybe you could just try the Rice Dream

alone.

Lori

__________________________________________________

[Guest guest]

Belinda - Polycose is a powder you can stir into drinks

and perhaps some foods. It is slightly sweet and adds

calories. I believe it is a form of carbohydrate . We put

it in koolaid and milk. Ben likes Boost and will drink it

from the can with a straw if chocolate and cold. He

takes Pancrease MT 16 for pancreatic insufficiency a part

of Shwachman's.I've enjoyed meeting you and a Texan too!

Jan

rrdgtchr@... wrote:

> Jan,

>

> What enzymes is Ben taking? And what is Polycose? I have not really looked

> into the issue, but it can't hurt. Cassie sure needs to put on weight. She

> is at 33 lbs. and is now 5 1/2. But, she has put on quite a bit in the last

> couple of years. She was 18 lbs until about 2 yrs. old and was all skin and

> bone.

>

> Hope everyone has a wonderful holiday.

>

> Belinda Rose

>

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

> Now the best and coolest websites come right to you based on your

> unique interests. eTour.com is surfing without searching.

> And, it's FREE!

> http://click./1/3013/7/_/480115/_/956280329/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

,

Yes, we saw Dr. Wasserman at Baylor 10 years ago

at Baylor. Our GI and I guess Wasserman left so we go

to Children's to see Dr. Keljo (GI) and Dr. Wasserman.

We sometimes see Wasserman at Medical City just wherever

he is the day we are coming to Dallas. Dr. Sugarman is

in practice with Dr. Wasserman now. We saw him almost

2 years ago. H e gave out more info than Wasserman.Dr.

Wasserman seems to know a lot and takes good care of Ben

I think but gives so little info to me. Have you seen Wasserman?

Were you happy with his care? Do you have good care in

St. Louis. It's hard to know how good the care is when you

don't have anything to compare it too. We don't know anyone

else with Ben's diagnosis (CVID). Ben has been much more well

since beginning IVIG under Dr. Wasserman. Do you miss TX?

Jan

wrote:

> Jan,

>

> Do you (or did you) see Dr. Wasserman in Dallas (when he was at Baylor)?

> I am from Dallas, and I know for a while he was the only ped

> immunologist in the area. Who do you see at Childrens? I seem to

> remember that Dr. W stopped seeing patients at Childrens and moved to

> the Childrens Hospital at Medical City... but I could be wrong. I was

> just trying to see if there's another ped immunologist in town now --

> I've been in St. Louis for a couple of years and am out of the loop.

>

> Thanks!

>

>

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

> Your high school sweetheart-where is he now? With 4.4 million alumni

> already registered at Classmates.com, there's a good chance you'll

> find her here. Visit your online high school class reunion at:

> http://click./1/3139/7/_/480115/_/956281221/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Hi Jan,

Yes, I saw Dr. Wasserman while in Dallas -- he consulted on my case. I

had actually known him for many years, though, as I was a counselor at

the American Lung Assn's Asthma camp for 5 years, and then Asst.

Director for one year, so we had worked together for a number of years

on camp committees and such. I haven't heard of the new guy, but I'm

really happy to know that he explains things more completely!

I have wonderful care here in St. Louis... and unfortunately, I've had

horrible care in other places, so I know it's really good. I am a

medical student, so I think that helps a lot -- we have an excellent

Student Health department (how often do you hear that said!?), and my

internist works carefully with my specialists to make sure I can stay

out of the hospital as much as possible, and do as much of my care at

home as possible, smoothly coordinated with the homecare company and all

the docs involved. I also had excellent care in Dallas, coordinated by

an internist at UT-Southwestern. I've seen a lot of people get horrible

care (both patients that I am involved in the care of, and people I've

known through the internet... I run an adult group for PID patients). I

have really high standards, and I know that I'm really lucky.

Do I miss Dallas... sometimes. My parents still live there, so I go

home on breaks (when I'm not in California, where my boyfriend lives).

Most of my highschool friends have moved away to take jobs or go to grad

school... but we all scattered around the country for college, so we're

pretty used to only seeing each other when we're all home for the major

holidays. I miss our church in Plano, though... haven't found anything

like it anywhere else I've lived. I miss my doc in Dallas, even though

I have a great one here. But we get together when I go home -- I

usually schedule a " catch up " appointment (which is only partly to catch

her up on my health... more on my life!), and we sometimes go to lunch.

I really like St. Louis, though, and I really loved New Hampshire, where

I went to college (except for the medical care), so I'm lucky that I

haven't ended up anywhere I hated and spent all my time wishing I could

go home. I have thought about going back to Dallas for residency at

Childrens (I want to be a pediatrician), but some of that depends on

what happens with my boyfriend... if things become more permanent, I

think I'd move to California, rather than have him relocate. He really

loves it out there, and he just bought a house... and I love it, too.

So Stanford's Packard Childrens Hospital is certainly on the list as

well. So.... we'll see.....

Random fact: did you know that Hamilton (the skater) has

Shwachman's? That's why he's pretty short -- because they didn't know

until pretty late and he had such problems with malabsorption during his

early years that it stunted his growth. But boy has he accomplished a lot!

" I firmly believe that the only disability in life is a bad attitude "

- Hamilton

Gotta head to bed... welcome to the group!

[Guest guest]

,

Thank you for responding. Ben and I do know about

Hamilton and I am currently reading his book. Shwachman's

is a scary disease and so few people know of it. Ben recently had

surgery and I was surprised that no one at the hospital had heard of

it. Ben's pediatrician is very nice. I wonder if she was ill as a youngster

as she has mentioned having a porta cath before. I didn't realize how

limited our info specific to Ben (blood test info,etc.) was until meeting

some others on the Shwachman's Email onelist. I have asked Dr.

Wasserman before and usually he just gives me a general answer like

he doesn't think I could understand the specifics. Maybe not, but I would

study until I figured it out. He does make the decisions himself, not his

nurse and I like that. He takes care of the CVID, allergies,and occasional

asthma problems. Have you heard of Dr. Mamlok in Lubbock, TX? I

(and my daughter ) go to him for allergies and asthma. It is much

closer to where we live. I don't know if Dr. Mamlok knows as much about

immune deficiency so we cont. to make the long trip to Dallas. I think those

who have been ill themselves make the most understanding and wonderful

doctors. We met a neat doctor at a meeting of the PIDsupport group in

Lubbock. He was the speaker and also has immune deficiency himself.

I'm trying to remember his name. I believe he is in S. TX.

Please give me any information you can on getting the best health care

I can for my precious son. Like you and others he has been through so

much.

I'm glad your missing your church, but hope you find a good one since

you may not move back. Good luck with your health, boyfriend and picking

out where to go into your residency.

Jan

wrote:

> Hi Jan,

>

> Yes, I saw Dr. Wasserman while in Dallas -- he consulted on my case. I

> had actually known him for many years, though, as I was a counselor at

> the American Lung Assn's Asthma camp for 5 years, and then Asst.

> Director for one year, so we had worked together for a number of years

> on camp committees and such. I haven't heard of the new guy, but I'm

> really happy to know that he explains things more completely!

>

> I have wonderful care here in St. Louis... and unfortunately, I've had

> horrible care in other places, so I know it's really good. I am a

> medical student, so I think that helps a lot -- we have an excellent

> Student Health department (how often do you hear that said!?), and my

> internist works carefully with my specialists to make sure I can stay

> out of the hospital as much as possible, and do as much of my care at

> home as possible, smoothly coordinated with the homecare company and all

> the docs involved. I also had excellent care in Dallas, coordinated by

> an internist at UT-Southwestern. I've seen a lot of people get horrible

> care (both patients that I am involved in the care of, and people I've

> known through the internet... I run an adult group for PID patients). I

> have really high standards, and I know that I'm really lucky.

>

> Do I miss Dallas... sometimes. My parents still live there, so I go

> home on breaks (when I'm not in California, where my boyfriend lives).

> Most of my highschool friends have moved away to take jobs or go to grad

> school... but we all scattered around the country for college, so we're

> pretty used to only seeing each other when we're all home for the major

> holidays. I miss our church in Plano, though... haven't found anything

> like it anywhere else I've lived. I miss my doc in Dallas, even though

> I have a great one here. But we get together when I go home -- I

> usually schedule a " catch up " appointment (which is only partly to catch

> her up on my health... more on my life!), and we sometimes go to lunch.

> I really like St. Louis, though, and I really loved New Hampshire, where

> I went to college (except for the medical care), so I'm lucky that I

> haven't ended up anywhere I hated and spent all my time wishing I could

> go home. I have thought about going back to Dallas for residency at

> Childrens (I want to be a pediatrician), but some of that depends on

> what happens with my boyfriend... if things become more permanent, I

> think I'd move to California, rather than have him relocate. He really

> loves it out there, and he just bought a house... and I love it, too.

> So Stanford's Packard Childrens Hospital is certainly on the list as

> well. So.... we'll see.....

>

> Random fact: did you know that Hamilton (the skater) has

> Shwachman's? That's why he's pretty short -- because they didn't know

> until pretty late and he had such problems with malabsorption during his

> early years that it stunted his growth. But boy has he accomplished a lot!

>

> " I firmly believe that the only disability in life is a bad attitude "

> - Hamilton

>

> Gotta head to bed... welcome to the group!

>

>

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

> Your high school sweetheart-where is he now? With 4.4 million alumni

> already registered at Classmates.com, there's a good chance you'll

> find her here. Visit your online high school class reunion at:

> http://click./1/3139/7/_/480115/_/956304591/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Jan,

We too have tried to take Cassie off of the IVIG about 2 years ago without

any luck. The immuno wants to try it one more time and he says if she does

not respond then we probably won't be checking again for at least a few

years. Also, I think the insurance co. requires that the levels be checked

every once in a while. We are hoping for the best.

She used to scream everytime we drove by the hospital which is difficult to

avoid since it is right near all her doctors and we live not even a mile

away. But, she has got much better. She actually loves to go and visit with

the nurse. Her good friend who is her age also is there with us and they

play a lot so it is not too difficult now.

Hope everyone has a wonderful weekend. Take care.

Belinda Rose,

Mom to Cassie, my little goose

[Guest guest]

Belinda,

Ben did his first year of IVIG in the hospital and I

hated it. There was nothing for a 2 year old to do that

was hooked up. He cried whenever we drove down the

major street that the hospital was on. He would beg, " Turn

off Mommy. " The Mall was also on that street. He had so

many IV's and bloodtests. When my 2nd baby was born

they wouldn't let her on the floor of the hospital so we were

one of the first patients here to do IVIG homecare. Its very

common now I think. It is so much more comfortable and the

risk of catching something is greatly reduced.. I used to rent

videos and now I rent video games and he is happy after the

the medicene is flowing fine. I insist on the same nurse whenever

possible as he is shy and just needs to know that they know him

and know how to stick.

Is Cassie being tested to see if her immune problem is outgrown?

Ben went off twice for 3 months to check that at age 5 and age 7.

They also checked if he made antibodies to a shot. (No) The doctor

now thinks he will never outgrow it and need IVIG for life probably.

It was kind of scary to me to be off for 3 months, but we so hoped he

had outgrown it. Apparently, the IVIG was just doing a good job of

keeping him well as his sickness rate was low then. I hope Cassie

has better luck. Let me know.

Jan

> Jan,

>

> Thanks for asking. Cassie is doing okay. She has been off IVIG for almost 8

> weeks. We have had low grade fevers and a slight cough, but nothing we can't

> contend with. We have to be off the IVIG for at least another 4 weeks before

> they start any of the pre vaccination bloodwork. We are on Ampicillin,

> Flovent, Serevent, Flonase, and Extendryl. She has been so happy that we

> don't have to go sit for hours on end at the hospital. But, so is everyone

> else.

>

> I hope everyone is doing fine. Summer is almost here. We are 13 more days

> until the end of school.

>

> Take Care,

> Belinda Rose,

> Mom to Cassie, my little goose

>

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

> You have a voice mail message waiting for you at iHello.com:

> http://click./1/3555/7/_/480115/_/957482846/

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

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Diane,

I am so grateful to the list for giving me some hope that other people

can understand what it's like to be a parent of a child who is

constantly sick.

Autumn has been sick since I can remember. This past year has been

especially difficult with ear infections, sinusitis more times than I

can count, and newer antibiotics. I have resorted to a list (updated

weekly) placed on my refrigerator so I can remember what to give her and

when. She is taking Ceftin 2Xday until next week when I hope we can

drop it. She is also on Claritin, Nasonex, and Intal. As a nutrition

enhancement, I also see that she gets a multivitamin and 500mg of extra

vitamin C. I realize that vitamin C may not help for everyone, but for

the past month she has been adding it, her illnesses have slowly

decreased in severity.

I haven't had any insurance difficulties yet, but I am bracing for

them. I work for a nonprofit organization that has to renew its

insurance each year, sometimes with different companies. While none of

her illnesses can be excluded, we could have to pay as much as 67% more

in premiums if we have to change companies again! Not a pretty sight.

, mother to Tabitha age 4 and Autumn age 2 (IgG def., asthma,

chronic sinusitis, and allergies--unknown origin)

[Guest guest]

Re: I'll be taking policosanol and then added some heart

healthy l-arginine, hawthorne berry, garlic-cayenne combo

(currently taking 3 gms garlic/day), a reservatrol complex

and increased my usual coQ-10 to 120mg/day (from 60).

Hi Geri,

Use caution with Hawthorn as it can interact with other

supplements and prescription drugs.

These are the most common side effects and interactions:

Hawthorn side effects:

At therapeutic dosages, hawthorn may cause a mild rash,

headache, sweating, dizziness, palpitations, sleepiness, agitation,

and gastrointestinal symptoms.

Drug Interactions:

Hawthorn may interact with vasodilating medications and may

potentiate or inhibit the actions of drugs used for heart failure,

hypertension, angina, and arrhythmias.

Source:

http://www.raysahelian.com/hawthorn.html

Fran

[Guest guest]

Hi, Everyone,>> Hi Geri,

I just joined ;-). Been lurking for a while, I think I'll learn a lot from this group. >>Nice to meet you:-)

First had my cholesterol measured at age 21, over 30 years ago - and it was 280. It's been between 212 and 280 for most of that time. Just had it measured 2 weeks ago and it's 322. HDL is 62, LDL is 212 (normally, 130-160); triglyceride 240 (typical for me). Only got it measured because my blood pressure - for an unknown reason - has been going from 130's/80's to over 160/100 over the past month. Luckily, it doesn't stay that high very long, but under stress (doctors office), it has reached 180/110. Also confirmed I'm not currently diabetic (family history of that and heart disease). >>Geri, I just want to point out...since by your name you sound female;-)...that all the ladies I know, have had increases of stuff like this from menopause related things. For instance, my BP has gone up alot. They used to never be able to find it, joking i must be dead:-) Now it fluctuates alot.and has maintained a higher norm now. My cholesterol also has risen since meno. I personally think itis normal for these things to do that, or they wouldn't.

I found me a new doctor fast (was in-between internists), we did a lot of blood work and the good news is that homocysteine is good (4.0); CRP is high, 5.0, but I also have several autoimmune diseases, so it could be due to inflammation.>> I have the same problem, in fact first time I had it checked it was 23. Now my cardiologist told me to not even look at that particluar test for me, because it is not indicitive of heart stuff, only the auto immune stuff.

I've successfully been treating psoriatic arthritis, fibromyalgia and myofascial syndrome with vitamins, supplements and exercise, so didn't want to immediately go on prescription drugs. Me too:-)

Thankfully, my new doctor will work with me on this (for a limited amount of time). That is good news.

I just ordered some supplements to help lower LDL, total cholesterol and triglycerides, focusing on the first one. If I lowered it 52 points, then all of those readings would be normal for me. Of course, that may or may not mean I'll die of heart disease sooner rather than later, don't know. I'm altering my diet to reduce saturated fats (already eat lots of nuts, and take 'good oils'). I'll be taking policosanol and then added some heart healthy l-arginine, hawthorne berry, garlic-cayenne combo (currently taking 3 gms garlic/day), a reservatrol complex and increased my usual coQ-10 to 120mg/day (from 60). I've been meaning to try ashwagandha to reduce my other inflammatory stuff, so added that, too, since inflammation could affect heart and arteries. I take tumeric also for inflammation. Plus the MSM/Chondroiton/glucosamine.

I'll be getting an EKG and CVB next week, and probably an echocardiogram sometime after that. Next blood test is in January, so my fingers are crossed that there is some improvement in the blood tests. With my history of side effects and drug sensitivities (and insensitivities), I really don't want to have to take a statin. Weaned myself from all prescription drugs and painkillers 3 years ago - and want to keep it that way.

Sorry this is long, I'm a detail person ;-). I'm glad you are here, it's real hard accepting that I've yet another set of medical things to deal with!

Hope you are having or had a great turkey day! Nice to meet you Geri, neighbors just stopped by so have to cut this short.., Jill

Geri