Re

[Guest guest]

Yes, my son is slow to change his habits and he is 6. I figure the only

thing that really bothers him is dairy and this is mostly during the cold

season. He is more likely to get sick if he has been eating dairy. But

it sure is tough for a kid, to change. He does have sweets, but he can

limit himself, and then there are times he cannot. So I do understand

about sending him off to school. If he feels pressured to be " just like

the other kids " he will want to eat as they do. My son wants to eat like

his father, who I am sure is not an O. So anyway, go for the home

schooling. Pam.

[Guest guest]

Hey Pam,

You know what's right for your son. He'll listen to you. Children nowadays

are so strong-willed. Mine are. We homeschool. Anyway, do you think his

father can endorse his eating things which are good for him? Like my kids

are appreciating that they have special foods for A's and they feel unique.

Sometimes i get so frazzled and think no one listens to me, even though i

really know best.. It's a confidence/tiredness problem i think.

Ann

in Florida

[Guest guest]

You know it is funny my Sunday school class was having a party and we

were discussing this. We learned that our senses actually lesson the older we

get, taste, smell all of them. So what the heavy " perfumer " smells is not

what we smell. Same with taste have you ever tasted what your parents say is

seasoned verses what you think it should be. I thought it was kind of

interesting. Steph

[Guest guest]

Heh, re, thank you for the homesite link, I will have to try it. Pam.

[Guest guest]

- RE

Dear , Your life will be radically changed, I know it has been, I KNOW that

my life and that Of my children's have been saved with HBOT. Blood test, and

brain SPECT scans do not lie. Again I owe Dr Harch a Indebtness that I will

never begin to repay in my life time. I tell you the truth that my daughters

entire brain was changed, and their disease Ceased because of the HBOT and the

Willingness to help by Dr Harch MD in 1994.

I am Happy to say that I have found a MD,DO and JD who has taken HBOT courses,

believes in Chelation, gives Vitiamins Shots and DAILY has a treatment of HBOT

for his health and well being with me at the center. This month we were Honored

to treat a Four month old who's MD referred from Texas, with Brain Damage, Early

treatment of this child before the age of 6 months old, we have documented the

fact that she can now use her affected side which she could not when she came

here. Her head has grown in one month over one inch! To see this childs life

alerted by HBOT is a reward that no amount of money can even match! I hope that

you will mail me information about your center, so that we can refer back to one

another. If there is anything that I can do I will gladly share with you. In the

mean time I will pray for a success so that you can help others. More

importantly Share a faith in God that I know you have with others who are in

need both Spiritually and With their health.

Sincerely

Rapid Recovery Hyperbarics

Health Enhancement Center

http://www.hbot4u.com

Rapid Recovery Hyperbarics

Health Enhancement Center

http://www.hbot4u.com

[Guest guest]

I couldn't get my to work either.

ed

" Re "

I looked back to see what your " Re: Free Rife Machine " referred to,

but did not find any post with the subject " Free Rife Machine " for

the " Re " posts to refer to. Evidently it refers to something

mentioned in a previous post, but I could not find it. Wouldn't it be

mopre helpful if the " Re " designation in the title referred to

another Subject and not to something discussed inside a previous post?

I think that possibly the Rife Generator download on Dr. Jon's site

is what was discussed, but I'm not sure. I wanted to read up on it,

because mine does not make any sound that I can hear when I turn it

on. Did anyone else have this problem? Dick

[Guest guest]

Testing address

Re [ ]

>

> --- Matt Hastings <matt_1066@...> wrote:

> > Hi Judy,

> >

> > You shouldn't worry to much about the meds and their

> > side effects. The doc's are aware of the side

> > effects

> > and if they where more severe than the AIH itself

> > then

> > he would thing again. I would strongly advice you to

> > take the meds as prescribed by your doc. Three

> > recent

> > studies (in the USA, Sweden and Germany) have

> > indicated that, for most people with AIH whose

> > disease

> > is well controlled, life expectancy is not

> > significantly different from that in the rest of the

> > population. But if untreated it could be very short,

> > depending on how severe the AIH is.

> >

> > Will I have to stay on the Imuran forever?

> > This will depend partly on how severe your disease

> > was

> > in the first place and how well (and how quickly) it

> > responded to the treatment. Only about 20-30% of

> > people can remain off the drugs for long periods.

> >

> > Try going to the AIH Website at

> > http://autoimmunehepatitis.homestead.com and reading

> > about the drugs and the FAQs.

> >

> > Take care

> >

> > Matt (AIH-95 LT-99)

> >

> >

> > ================================================

> > --- Judy <sewfit418@...> wrote:

> > > Hi Jerry.....I'm just a real worrywart, lol. I

> > > would never not take

> > > the recommended meds. After all the research I've

> > > been doing, I

> > > understand the consequences of leaving the AIH

> > > untreated. I'm just

> > > looking to see if there's anything new in the med

> > > field that would

> > > have less side-effects. The " C " word scares me to

> > > death. I'm also one

> > > of those people that don't believe everything the

> > > doctors tell me.

> > > I've had several bad experiences with having done

> > > that.

> > >

> > > I'm really trying not to worry but that's easier

> > > said than done.

> > >

> > > Another question, will I have to stay on the

> > Imuran

> > > forever? I sure

> > > hope not.

> > >

> > > Thanks for all your caring support & information.

> > I

> > > really do

> > > appreciate it.

> > >

> > > Take Care,

> > > Judy in Va.

> > >

> > >

> > >

> > > > Judy..... any immunosuppressant increases the

> > risk

> > > of contracting

> > > > cancer,

> > > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi ,

I don't think I actually formally introduced myself. My son has been

diagnosed with Primary Immune Deficiency, but has not been tested

specifically yet. Both his Ped and I think it is probably IgA def.--based on

his health issues. Of course, I am worried about all of the infections, but

he may also be facing open heart surgery next summer, so now I am even more

concerned about his weight. That issue will have to be addressed first, as a

precaution before surgery. He could just be small because of all of the

infections combined with his cardiac problems. Many cardiac kids have the

same body--very lean. I just worry that such a small person could do well

during and after such serious surgery. During his first open heart, he was

seven months old--and very small also.

Again, thank you for the information on . It has been very helpful.

has chronic sinusitis, and ear infections (with tubes) and severe

allergies. He cannot attend school at this time because it would be too

risky. So he is tutored through the school district here at home. It's been

a little stressful being stuck at home, so I try to keep him as busy as

possible when he has good days. On bad days (or should I say weeks), I just

pray a lot. I also have a lot of supportive friends. Not to mention, this

group has helped me immensely. I have learned so much reading the e-mails,

and people in this group understand the way others couldn't possibly.

Sandi--Mom to , age 8.

[Guest guest]

Dear Sandi,

I do not write often, but your son and my daughter seem to share some

similarities in their medical history. My daughter has also been through 2

open heart surgeries and has IgA deficiency. She is now 12 years old and has

a pacemaker due to complecations from bacterial endocarditis. You may

already have plans to have your son tested for antibodies to IgA antibodies

because sometimes anaphylactic reactions can occur on blood transfusions for

those that are IgA deficient and have an immune reaction to the small amount

of IgA in the donor blood.

Summer is the wisest time to have an operation for a PID pumpkin because

having a viral infection which are so ubiquitous in the winter may

complicate recovery from the surgery. One thing you may be aware of is that

the new interns, residents and fellows usually start in July or August--you

may want to check when this occurs. We always planned to have surgeries

before the new folks come because on the rare occasion when a phlebotomist

isn't available, the interns, and residents. get to stick and they sometimes

are not as proficient (especially the interns) as we'd like them to be at

this time. Also, sometimes the interns, residents and fellows write the

medical orders for the patient and some being newbees to the hospital at this

time, they don't get it quite right (especially the interns).

I know you are anxious about the upcoming surgery because it is a very

scary thing. But hopefully the surgery will help his heart work more

efficiently which may allow for greater growth and better health.

--Martha

[Guest guest]

,

also had bacterial (staph) endocarditis, after his open heart

surgery. I think the plan is to hook him up to an ambulatory EKG for a while

before he has surgery. If he needs a pacemaker, they can do it at the same

time. He will be receiving a pulmonary valve which he currently does not

have. The one he was born with was simply too primitive and not functioning

at all, so the surgeon removed it. I have just kept hoping these last seven

years that he won't EVER need the valve.

I do have one question, answer whenever you get the chance--it's not an

immediate need. If Bri would react to a blood transfusion, would he already

have had problems with transfusions with the first surgery? He was so young,

and I'm not sure the immune problems were evident yet. At seven months old,

he didn't have any bad reactions--but I want to take every precaution.

Thanks for the advice about having him tested first.

Take care!

Sandi--'s Mom

[Guest guest]

I also waited until the Summer before Maya had planned surgery. Too

many bugs around this time of year and I think their immune system is

alreay under threat. She tolerated the surgery very well and didn`t

need to go into Intensive Care. Hope all goes well for him.

> Dear Sandi,

> I do not write often, but your son and my daughter seem to

share some

> similarities in their medical history. My daughter has also been

through 2

> open heart surgeries and has IgA deficiency. She is now 12 years

old and has

> a pacemaker due to complecations from bacterial endocarditis. You

may

> already have plans to have your son tested for antibodies to IgA

antibodies

> because sometimes anaphylactic reactions can occur on blood

transfusions for

> those that are IgA deficient and have an immune reaction to the

small amount

> of IgA in the donor blood.

> Summer is the wisest time to have an operation for a PID

pumpkin because

> having a viral infection which are so ubiquitous in the winter may

> complicate recovery from the surgery. One thing you may be aware

of is that

> the new interns, residents and fellows usually start in July or

August--you

> may want to check when this occurs. We always planned to have

surgeries

> before the new folks come because on the rare occasion when a

phlebotomist

> isn't available, the interns, and residents. get to stick and they

sometimes

> are not as proficient (especially the interns) as we'd like them to

be at

> this time. Also, sometimes the interns, residents and fellows

write the

> medical orders for the patient and some being newbees to the

hospital at this

> time, they don't get it quite right (especially the interns).

> I know you are anxious about the upcoming surgery because it is

a very

> scary thing. But hopefully the surgery will help his heart work

more

> efficiently which may allow for greater growth and better health.

>

> --Martha

>

>

>

>

[Guest guest]

Sandi - better safe than sorry. I would ask that he be given only irradiated

blood. Here at our local children's

hospital all patients under 14 are only given irradiated blood. It keeps him

safe either way.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus,colonic inertia)

http://maceyh.home.att.net

[Guest guest]

In a message dated 4/11/02 2:33:56 PM Pacific Daylight Time, writes:

Message: 15

Date: Thu, 11 Apr 2002 12:18:10 -0400 (EDT)

From: "" <jcando@...>

Subject: past member/maria?

Does anyone know whatever happened to a member who I think went by ? She had Esophogeal Varacies, had a boyfriend who was helping her and I think was a recoving alcoholic.... I haven't seen a post from her in at least a year or so and I might have the name and circumstances wrong.

You have the name right -- , who was with Greg. I haven't heard from her for quite a while.

Harper

[Guest guest]

,

Hello, I hope everyone at your house it better. I was also alarmed that

you weren't at the hospital with a PE. Have they put in an " umbrella " ?

Also some people don't respond as well with the Coumadin. Have they talked

of switching to something else? Don't worry about being off topic, we are

concerned about you, too.

I was feeling so badly yesterday that the thought of going to the hospital

sounded GOOD. Now, I am a single parent, and my only thought was, " Who could

take care of while I'm gone? " It occurred to me that I have a few

friends who could " watch " him, but they wouldn't know about his meds, his

Nebulizer, when he needs to go to the Peds, etc. It just seemed easier to

stay home--is that anything like what goes through your mind?

If you ever want to e-mail me--please feel free. I had a roommate who I

took care of--he experienced several PE's. One I was able to catch, and they

put in the " umbrella " . But his condition took constant monitoring, and so

please take care of yourself.

Sandi, 's Mom

[Guest guest]

Hi , Has anyone come up with why you have the DTs. I just wondered

because one of the symptoms of Behcets is also phlebitis deep vein

thrombosis. A little suspicious with all that is going on in your family.

We got a pretty wonderful Genetics 101 overview at the recent IDF retreat and

became a bit interested in the family genetic variances. ( Actually, it was

better than my college genetics course, I have a major in Biochemistry).

What I understand is that with as much as you are seeing in your family it

may do well to have someone do an genetic workup through your family line.

If nothing else it would be interesting to see how it is being passed down

for and in the future. Because Lucas is adopted we cannot

track any of that information.

I also received a good bit of information regarding stem cell transplants

and the new mini-bone marrow transplants they are doing . The did not

discourage the collection of stem cells to be used in the future. ( It would

require us to contact the young birth parents to see if they have another

child to save the cord blood.

Just a thought for you also . They just extract the cord blood after

delivery and freeze it. No harm to anyone. It is usually discarded. It can

be very valuable in certain circumstances. Mixed racial children are the

most difficult to type. ( Lucas is French, Italian, Mexican, Spanish and

Chinese. It makes for a gorgeous kid but not good for transplants. The issue

is we do not know what the future of stem cell transplants. We may have some

amazing breakthroughs in the next 10-20 years. It may be one way we can help

our kids particularly non CVID kids. Being that I am in the science field it

is always amazing to me to see what is on the horizon to bring hope. I was

able to meet several kids with SCID that had mini bone marrow transplants

that are doing wonderfully. But again these are generally not available for

CVID kids. My understanding is that our kids have too may variations in the

immune system. XLA is another possibility on the horizon that either stem

cells or gene therapy may change the whole world of possibilities. I keep

remembering how fortunate we all are with our kids. My immuno has said

several times that Lucas would not be alive 30 years ago and if we did not

have the antibiotics and IVIG there would be minimal hope for the future.

The main issue is the long-term organ damage from constant infection. BARBIE

(Lucas, hypogamm, dysgamm, Asthma,SID, Bipolar, etc. )

[Guest guest]

Hi ,

Sorry, I don't know which site I was reading in regard to Behcet's. I

found it through a Google Search--it was one of the first few that popped up.

Anything really complicated, I usually look up using Google!

is okay, still fighting the usual--sinus and ear infections. So far,

not having a very good summer--too many infections. But, he is still

smiling. I don't know if I have Lupus or Sjogren's Syndrome (acts like

Lupus) yet. I see the Rheumatologist on the 12th. However, they just sent

me info, and it looks like they want the full amount UP FRONT, and I have

Medicare--which pays for 80%. I will call the office tomorrow, if they

insist on this policy, I will be seeing another Rheum. I've been kind of

going through another flare, I think, as there is just not enough sleep in

the world for me right now. I need my energy, so I am going to be assertive

with whatever Doc I end up seeing!

How is it going with " your time " ? Have you had any at all?

Sandi, 's Mom

[Guest guest]

,

is sick again--both ears and sinus. We are going to try an adult

Pneumovax, so see if it helps. I hope so. I should help his ears, and will

also help his sinus. If it does help, you know I'm going to march in there

and say, WHY DIDN'T WE DO THIS SOONER???? Hang in there. Monday I broke up

with my boyfriend of two years, so between that and the sinus/ears Bri is a

little on the grumpy side. I'm trying to keep him distracted.

Sandi

[Guest guest]

Ray,

Thanks for the kind words. It's hard to keep telling that we will be

just fine (I know we well) when it doesn't feel like it!! Because he's nine,

I am dealing with both of our emotions. And then there's the sinus infection

behavior...

Sandi

[Guest guest]

Sandi,

So sorry to hear is sick again. I know it's got to be rough on him.

Also, sorry to hear about your personal situation. Distraction is good for

kids, but not so easy to do for us as parents. Hang in there. (((HUGS)))

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (15 months)

[Guest guest]

RE

Hi ,

I tested pos for EBV and CMV and HepC viruses almost 10 yrs ago. For a couple

of years I was bedridden and very sick. After a couple of years of being

treated by an orthomolecular immunologist, I began to improve via diet and

supplement protocol.

I am much better than I was, but still only at a tolerable plateau.

I've been taking " Lauricidin " about 6 mo now and my dr believes it's going to

get rid of all *my* viruses. It's a potent form of Monolaurin sold by a Dr

Kabara (do google search) in MI, at Med Chem Labs.

My titers for the EBV and CMV are just about nil, and viral load of hep also

lower. My LFT's (Liver Function Tests) are also normal for the 1st time in 10

years.

In response to your frustration I share all this and hope it is of some help.

Feel free to write off list for more info if you want to.

Hope springs eternal,

June

> Hi,

>

> Ok, I am going to scream!! I just got back yet ANOTHER positive EBV and

> sackie B's test results!! Even after I am taking tons of Lysine,

> Monolaurin, Wobenzym N, and Vitamin A. I mean what else can I do to get

> these test scores to go down to normal?? I know it means that there is

> most

> likely something else going on in my system to make these stay high but

> still

> you'd think they would go down some. Any suggestions, this is miserable.

> Thank you,

>

>

[Guest guest]

In a message dated 11/16/02 2:26:57 PM Pacific Standard Time,

jbclem@... writes:

> prove via diet and

> supplement protocol.

> I am much better than I was, but still only at a tolerable plateau.

> I've been taking " Lauricidin " about 6 mo now and my dr believes it's

> going to

> get rid of all *my* viruses. It's a potent form of Monolaurin sold by a

> Dr

> Kabara (do google search) in MI, at Med Chem Labs.

> My titers for the EBV and CMV are just about nil, and viral load of hep

> also

> lower. My LFT's (Liver Function Tests) are also normal for the 1st time

> in 10

> years.

> In response to your frustration I share all this and hope it is of some

> help.

> Feel free to write off list for more info if you want to.

> Hope springs eternal,

> June

Thank you June, this is the same stuff I takea and I think I should start

upping my dose..maybe I am not taking enough to make a difference. Thanks

again,

[Guest guest]

Hi,

There is great help for very apraxia. Speech therapy, preferably

individually, works very well. It takes time - sometimes, a few years, but,

then, no one

can tell a difference. Asher's expressive language has now caught up with his

receptive language and he is actually almost a year ahead of his age in both

now. Before, there was a huge gap between what he could understand and what he

could say. In 'regular' kids, there's a gap between these, but it's usually

much smaller. A good evaluation by a speech therapist should be able to diagnose

it, but be certain that they have considerable knowledge of verbal apraxia.

I've been told that it has to be treated differently than other speech

disorders.

Anne R.

[Guest guest]

woops... I meant to say " there is great help for verbal apraxia " ; hmmm -

maybe I have writer's apraxia, just kidding!

Anne R.

[Guest guest]

woops... I meant to say " there is great help for verbal apraxia " ; hmmm -

maybe I have writer's apraxia, just kidding!

Anne R.

[Guest guest]

re

Hi Tat.Glad yre doing ok.I always knew.No bride,I proposed to the Doc. but he.s

married to the group and besides that he does.nt practise the love which dare

not speak it.s name.My former bride,the Italian god!,just ended a three months

spell in jail for robbing a tourist,snatching handback.He has been a coke addict

all the time,I only discovered that too late.He walks the streets of Amsterdam

now,homeless and refuses all help from authorities.I hve done enough.The human

mind is one of the most difficult things to understand,why do people certain

things?I.am alone again and getting very close to mat cat poeki,it seems that he

understands,can.t explain.I saw a broadcast on TV about after death

experiences.Is the spirit really something complete independent and moves out of

our bodies when our bodies decay?????.You.re doing fine Tat,nice job and

responding,strong caracter and so many living things around you and take care

of.Wonderfull.Hope Carol will get that damn treatment,in a hemis

llions of dollars on arms a woman who is in need of a few bucks cannot be

helped.FUCK all politicians.Liefs .