Treatment Plan

[Guest guest]

I'm confused. How does suppressing an already non-existent immune system help

the patient improve?

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]

Dear Sandy,

I just wanted to let you know that I have been thinking of you and your

son. I wanted to let you know that Adam is lucky to have such a terrific mom

not only caring for his day to day needs but one who works hard to evaluate

all the options for his care and choose the best one. Take care of yourself.

Martha (mom to Chrissy,12 IgA deficiency, polysaccharide coated

antibody deficiency, hx of bacterial endocarditis X2, migraines etc.)

[Guest guest]

Sandy--I am so sorry that this is the way that Adam must go--it is really

confusing to know what to do when your child is sick and needs this sort of

medication to help make things better. Autumn gave such an insightful

reply. I know that this may be confusing to you, but we went through

slightly similar times with --if you need to talk, I'm here.

Chemotherapy or immune suppressing drugs can be hard on the body and as

Autumn stated, it is sometimes the only way to get the body working better.

I will be praying for Adam and you. Please keep us updated.

--mom to ,8, dysgammaglobulinemia, leukemia-in remission, etc.

[Guest guest]

Ursula...

This is from the doc's email regarding cyclosprine A

and rituxima. He basically suspsects that his T cells

are misguiding his B cells to self attack...

" I think that the main risks are that his infections

could be aggravated, but I suspect that will not

happen: if his immune system is dysregulated, we are

betting that this treatment will paradoxically, lead

to improvement. We might want to consider treating

him with antibiotics while this is going on. "

=====

Sandy

Mom to Adam

IgA def, chronic lung/sinus disease, diabetes, hypothyroidism, adrenal insuff.,

growth hormone def., refulx, JRA, bone marrow involvement (??), etc.

__________________________________________________

[Guest guest]

Sandy,

We have a family friend that was diagnosed with Sjrojen's (sp?) autoimmune

disorder and she is doing chemo in order to try to stop the progress. I

think it handles the autoimmune aspect of the illnesses.

I will be thinking of you and Adam as you go through this difficult time.

Grace 8/14/97 (IgA def, selective T-cell deficiency,pneumococcal antibody

deficiency, mild asthma, allergies)

Caelan 8/26/99 (IgA def, selective T-cell deficiency, pneumococcal antibody

deficiency, asthma, eosinophilic esophagitis, severe food allergies)

[Guest guest]

Hi all, I've been a member here since last year. Last summer I began a

treatment plan that a naturopath prescribed, and it is the most success

I've ever had with any plan. I thought I might share it with you all in

the hopes that it might help some of you. She began me with Cat's Claw,

Astragulus ligustrum, and Resveratrol. Each week should would up my

dosage and then she also added on Vitamins B12 and B6 as well as Fish

Oil. It might be worth it to ask your doctor whether this might be a

good treatment plan, and have him or her adjust it to your needs. Let

me know if you'd like more information about the dosage. LeeAnn

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