www.curejm.com

[michael's mom]

Has anyone heard of the benefits of Mangosteen juice for boosting the autoimmune system. I read in a local wellness magazine that the benefits are wonderful. Checked with pharmacy and it's pure juice. Very expensive--$ 25-35 a bottle which lasts about 1 week. I have been giving Michael 3 oz a day. Bloodwork improved after 2 weeks--dont know if this had anything to do with in. If you want information go to the Xango website. That's what I bought.

Also, Michael was diagnosed in Sept.- 2001. He went back to playing hockey shortly after which I feel he was blessed. He continues to be on predinose, methotrexate, IVIG, Hydroxichlorine and you all know the rest. Recently had knee pain. May have a bone buise or a bit of osteochronditis in tip of femur. Dying to get back playing. Doctor said rest a month and reevaluate. Has anyone heard of electrostimulation for bone regrowth?

Thanks, Debbie
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Debbie

[Connie]

Debbie -

It is never a good idea to boost the immune system in a patient with an autoimmune disease. You do not want to encourage their immune system to work even harder. I'm surprised the doctor was supportive of trying it.

It's great that he is getting better. What is electrostimulation for bone growth? My child had pamidronate infusions to undo the damage from steroids and it worked very well.

Good luck!
Connie
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Madeleine's mom
diagnosed 2/2004 with JM

[michael's mom]

Maybe boosting is the wrong word. It is supposed to have benefits on the immune system but I really dont understand the terms. It acts as a anti-fungal, anti-bacterial product. I never checked with the doc since it was just basically a fruit juice. I dont know much about electro stimulation either, Im waiting to talk to doc about both. As far as doing well, we seem to do well in one area then another area of concern pops up--such as the possibility of osteonecrosis.
I was reading about some treatments and that popped up. I just wondered if anyone else had.
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Debbie

[michael's mom]

What are the infusions that Madeline had and what were they for? Did the steroids affect her bones? How is she doing now?
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Debbie

[Connie]

Madeleine had pamidronate infusions. Her bone density was severly weakened from all the steroids. This drug worked fairly quickly and was given over a 3 day period every 3 to 4 months. She got it for a year.
Here is a good description:
Pamidronate is in a group of medicines called bisphosphonates (bis FOS fo nayts). It alters the cycle of bone formation and breakdown in the body.
Pamidronate is used to treat bone damage caused by certain types of cancer such as breast cancer or bone marrow cancer. Pamidronate does not treat cancer. Use all other medications your doctor has prescribed for those conditions.

It work very well for Madeleine and her bone density is much better now.

I am still very leary of any thing that works on the immune system. Their immune system is "haywire or over functioning" so you do not want to give anything that is going to alter the immune system. It's going to work against the medications they need to have on board to treat the disease. You want the damage to their muscles and blood vessels to stop.
I hope that makes sense. Always clear any supplement with the doctors - you don't want to take any chances.
Take care,
Connie
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Madeleine's mom
diagnosed 2/2004 with JM

[michael's mom]

I'll trust your word. You seem to be very knowlegeable about the disease and all that goes with it. In fact, I think it was you that mentioned way back that Michael needs to be careful playing travel hockey. While he continued to play up till now, he cant for a month until he is cleared by MRI.
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Debbie

[Jane19]

Hi! I knew that mangosteen is so beneficial. It can help us in so many ways... The mangosteen fruit is high in carbohydrates, fibers and iron but low in vitamins and minerals. Juice provides many benefits that will help improve the immune system and blood circulation, strengthen the body’s ability to fight disease and infection due to its powerful antioxidants and healthy nutrients. It was a good and a super food!

[michael's mom]

I was glad to hear that someone else heard the benefits of mangosteen juice. I ran it by my son's doc. She looked into and said it couldn't hurt. Micahel is now off prednisone and blood work is great. He completed a travel hockey season and won the new York sate and national championship in his division. I will not claim it was the mangosteen alone, but in combination with other treatment and the grace of God, changes were evident in his bloodwork two months after starting it. For some of you it may be worth a try.
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Debbie

[camaromatt]

Just like Michael my daughter Emily has been drinking a juice called mona-vie for about a year and since drinking it we've had 4 blood tests at the DR's and all tests show normal and we hav'nt had to take any meds for a year now just 4oz of juice each day.. A website tab is below this post check it out also is a email tab if you want the whole story.

I'm glad to hear Machael is doing good now and I'm sure its the juice But I do think you should try mona-vie it has more in it for your body and tastes great too..

Matt

[Rhonda]

As many of you already know, treating a child with JM requires the careful prescribing of various medications to get the JM under control. Good and balanced nutrition is always a good idea for anyone and especially our JM kids. Often times, doctors also suggest that a good multivitamin and extra vitamin D is needed, particuarly for those kids still on various forms of steriods due to the potential bone weakening.

The Cure JM Message Board is NOT INTENDED TO ENDORSE ANY PRODUCTS, especially those products in which someone is trying to solicit or sell directly. This message board is provided as a way for families to ask questions and find support by other JM families dealing with the same disease.

I highly encourage anyone to check with their doctor before adding any nutritional or herbal remedy to avoid any unintended consequences. If something sounds too good to be true, it often is.

Rhonda
Chairman, Cure JM
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Mother of Megan
Megan diagnosed at age 2 1/2 in 2002
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