Re: Mito patient with immune problems, will supplements help?

[Guest guest]

My son Conner has an immune disorder (and mito) -he just started treatment

on Monday- and I just saw information from the Immune Deficiency Foundation

last week that patients with immune disorders should absolutely NOT take any

supplements to enhance the immune system without checking with an

immunologist first. Evidentally, people with immunodeficiencies can have

abnormal responses to echinacea and other supplements, they can actually

turn on the part of the immune system that causes auto-immune disorders.

Basically it can make the body attack itself. Unfortunately, most general

physicians and pediatricians don't know much about immunology, otherwise I'd

say you should check with your ped.

Good luck with the immunologist! Have you done any specific testing for

immune disorders yet (immunoglobulin levels, vaccine titers, etc)?

Here are a couple of websites to check out:

www.jmfworld.org

www.primaryimmune.org

Mom to Conner (10, Asperger's, MD, partial seizures, asthma, GERD, and

immunodeficiency-CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

>

>Reply-To: Mito

>To: Mito

>Subject: Mito patient with immune problems, will supplements help?

>Date: Wed, 13 Oct 2004 21:45:29 -0000

>

>

>My 15 year old daughter has a mito disorder. She is having a hard

>time getting over a virus that she got on top of an ear infection

>she took 2 weeks to get over. Her ped. started her on multivitamin,

>garlic pill, zinc, and Echinacea to help boost her immune system.

>Does anyone know if this helps? Have any of you tried this stuff?

>She is already on Carnitor, CoQ10, and B2 for the Mito. She has an

>appointment next week in Nashville with an immunologist to see if

>she is a good candidate for the immuglobulin therapy.

>

>She has been out of school three weeks, what started as an ear

>infection that took two different antibiotics to take care of it.

>She then started with a headache that won't go away. They tried

>pain pills on her but they never really did much. The headache

>never completly goes away, comes on bad at times. They checked her

>sinuses thinking it was that but they were fine. We have had to put

>her back on homebound schooling. Has anyone else had these kind of

>problems? Any information would be greatly appreciated.

>

>Pat

>

>

>

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[Guest guest]

We have that.... Acyclovir and/or Olive Leaf Extract work.

Cindy-GA

Mito patient with immune problems, will supplements help?

My 15 year old daughter has a mito disorder. She is having a hard time getting over a virus that she got on top of an ear infection she took 2 weeks to get over. Her ped. started her on multivitamin, garlic pill, zinc, and Echinacea to help boost her immune system. Does anyone know if this helps? Have any of you tried this stuff? She is already on Carnitor, CoQ10, and B2 for the Mito. She has an appointment next week in Nashville with an immunologist to see if she is a good candidate for the immuglobulin therapy. She has been out of school three weeks, what started as an ear infection that took two different antibiotics to take care of it. She then started with a headache that won't go away. They tried pain pills on her but they never really did much. The headache never completly goes away, comes on bad at times. They checked her sinuses thinking it was that but they were fine. We have had to put her back on homebound schooling. Has anyone else had these kind of problems? Any information would be greatly appreciated.Pat

[Guest guest]

My 16 year old was just diagnosed with mito last week. He has been

wheelchair bound 6 times in the past 16 months. He was very fatigued

and could barely walk at all. This has happened after being sick even

with a minor cold. He was started on periactin for his headaches and

it seems to be helping. His doctor also added a B-multi (in addition

to b-2)and added CoQ10 and increased his carnitor. His younger

brother also has a mito diagnosis.

Zinc and echinacea are both good for the immune system, but people who

are allergic to ragweed esp. this time of year should not take echinacea.

[Guest guest]

Hi,

Someone already mentioned the dangers of echinacea if there is a confirmed

immune deficiency (partic. an IgA deficiency). From what I've read, (my family

has multiple primary immune deficiencies), it is true that echinacea can rev up

the immune system (in those with a tendency toward autoimmune problems - like

IgA deficiency)and it ends up attacking itself and creating more autoimmune

problems. Just an FYI.

Anne R