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FAHF-2

61 replies [Last post]
By chezscoville on Wed, 05-04-11, 01:21

The last time I tested him was last August. I normally test on a yearly basis, and his peanut allergy has seen significant increase every year for the past three years (even though he hasn't had any peanut exposure that we know of). I was very excited to see the levels go down instead of up. I had stopped giving him the formula, but I think I will start again to see if I can get his levels to go down even more.

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By uma_ru on Wed, 05-04-11, 17:24

The decrease in values is significant. I am really happy for you and I truly hope that the values will go down at the same pace. Good luck to you and your son.

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By Nice1704 on Fri, 09-23-11, 14:04

Hi all! I know this thread is rather old but I have been following it for a while now. I would really, really appreciate it if any of the parents who have seen and/or still seeing Dr. Li can update us of their progress (even if, God forbid, there is little or none). We are taking our 4 yr. old (peanut, egg, coconut and tree nut allergies) to see Dr. Li and I would love to hear from parents who have had experience with FAHF. Thanks in advance!

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By alokorea on Mon, 01-02-12, 16:32

We went to see our allergist in Chicago in Sept, and she told us that there a nationwide clinical trial of FAHF-2 going on for subjects 12 and up.

I then talked to the nurse who is actually running the trial and she said that results have been very promising so far--it works, and what they are looking at mostly is how long to take the pills for, what the maintenance dosage should be, etc.

She said that younger kids, ages 6 and up would be the next group to be studied, but that they were not sure if they would take part in that part of the study since it does involve swallowing something like 20 mini pills a day.

So we contacted Dr Li directly, and made an appt to go to her Chinese medicine clinic in NYC next week. She had us do a bunch of blood work before our visit--liver, kidney enzymes, a panel of allergy blood tests, and also fill out a bunch of other forms with our health history.

She sees patients 2 Saturdays and 1 Wed a month, and it was pretty quick to get an appt once we did all of the blood work.

My 6 yr old daughter has very severe peanut allergy and I decided that I would try it out too, for my seasonal hay fever. After this first visit, it looks like we will do blood work every 3-6 months, and also go to her clinic every 6 months to be checked out.

i guess we could have also just taken the formula from the web and gotten a local Chinese doctor to make it for us, but i was thinking that with Dr Li

a) the purity/source of the herbs is guaranteed (she has a special grower and tests all the herbs in her lab) b) hopefully we will get pills, and not have to drink the super bitter tea and c) we will be under the care of someone who really knows a lot about this particular formula and is an MD and will monitor us regularly for any potential side effects

i have posted below the email we got from the administrative asst who runs her schedule, Sharon Hamlin. Contact info is at the bottom.

i'll post again with more details after our visit next week
**********************************

Good afternoon:

Below you will find the lab work that's needed for the visit once you get all required information please call me to set an appointment. I’m attaching the information forms so that you can fill them out ahead of time and faxed or scanned back to me before your appointment, if you have any questions please feel free to call me at 212-241-1755.

Clinic address: Ming Qi Natural Health Care, 161 Madison Avenue, 12th floor, between 32nd and 33rd Streets.

We will need a copy of your or your child's lab test results before visiting Dr. Li, and we would like to monitor several blood tests every 3-6 months during the traditional Chinese medicine treatment. The lab tests include the followings

1) Liver function tests: AST, ALT
2) Kidney function tests: BUN, Creatinine
3) Total blood counts: white blood cell count, hemoglobin, and platelets
4) Total IgE: total IgE
5) IgE to specific foods and allergens: IgE for example to soy, milk, egg, peanuts, wheat & environmental things like cat, dog, dust mites, and pollens

[note: the formatting of the stuff below got messed up when i copied it from my email]

Food IGE
Environmental IGE
Apple
A. Alternata
Avocado
A. Tenuis
Almond
A. Femigatus
Cashew
Birch
Cod Fish
C. Herbarum
Egg White
Cat Dander
Egg Yolk
Cockroach
Hazel Nut
D. Farinae
Milk
D. Pteronyssinus
Peanut
Dog Dander
Pecan
Dog Epithelia
Pistachio
E. Purpurascens
Shrimp
Elm
Soy bean
F. Monilforme
Walnut
Horse Dander
Wheat
Maple
Sesame Seed
Oak

If diagnosed with asthma, please also send a copy of a recent lung function test.

Please scan or fax the results at your earliest convenience; our fax number is 212-241-9999.

Warmest regards,
Sharon M Hamlin

Sharon M. Hamlin
Administrative Coordinator
Center for Chinese Herbal Therapy for Asthma and Allergy,
NCCAM CERC: Center of Excellence for Research in CAM
Division of Pediatric Allergy & Immunobiology
Mount Sinai School of Medicine; Box 1198
One Gustave L Levy Place
New York, NY 10029-6574
Phone: 212-241-1755
Fax: 212-241-9999
E-mail: sharon.hamlin@mssm.edu

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By uma_ru on Thu, 01-12-12, 21:21

Alokorea - Can you please update us on how the appointment was.

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By alokorea on Sun, 04-15-12, 02:46

sorry it's taken me so long to post, but the appt was very good. Dr. Li is super nice. Spent lots of time with us explaining how the treatment works and what we could expect. Made it clear that this was not some kind of magic bullet--she advised us to think of it as a 2-year plan, where we would try it out, and see what kind of results happened. Showed us some pretty convincing data from patients whose ige levels went from 10,000 to 2,000, or 4000 down to 800 within two years.

In a case like ours however, where the peanut allergy is relatively speaking mild (my daughter's ige has been below 100 for 4 years, and climbed just above 100 in the latest test), she explained that we might expect to see the levels continue to rise, but that hopefully the rate of rise would moderate, and then slowly go back down. that was the case with another patient, a younger child who came in with levels around 200, her levels continued to climb for 18 months up to 300, and then turned back around and went down

we were debating whether to try enrolling our daughter in a clinical trial, but decided that we would wait for oral immunotherapy. after learning that being on the herbs would NOT disqualify her from oral immunotherapy [apparently you just have to be off treatment for 12 months to qualify for the trial, if and when it happens], we decided to go ahead with the fahf-2

the treatment protocol is pretty involved. there are granules you have to pour into their nightly bath; a claylike greyish lotion to be put on daily, and then a zillion different pills.

the pills come in two types: largish capsules, and smaller pills. my daughter actually has no prob with the capusules, cause they are coated, but we had to experiment a bit with the best way to take the pills. they are small, but not coated so they dissolve on your tongue and taste bitter. finally, we figured that just putting one or two in a spoonful of yogurt was the best way to get them down. i also decided to try herbal treatment for my seasonal allergies and have been drinking special tea and taking a different series of pills (10 pills/ 2x day).

all told, it wasn't cheap--we paid $800 that day for 2 appts and a roughly 3 month supply of pills for both of us. i have since spent another $1300 on herbs which should last through the summer [we live far away and so ordered up a big delivery]. but considering how much we spend on buying special food and epipens and doctor's visits, it seemed like it was worth a shot. just being able to go to a birthday party or easter egg hunt or ice cream shop and not worry about accidental ingestion would be worth every dime.

you are supposed to retake the allergy tests every 3 months to see how things are going; since we delayed the start of treatment we haven't done this yet, but at least anecdotally, i can say that my seasonal allergies do seem better than they have been in years past. over the past two years, i have had to go on a course of prendisone in the spring when things got bad and this year, knock on wood, i haven't had to yet. but who knows--that could be due to a million other factors like the weather or whatever.

apparently there is some research in the works about combining fahf-2 with oral immunotherapy, the same way they have been trying to see if xolair or sublingual or other things can help in the prep stage and make the oral immunotherapy go better.

we were also a little wary at first of trying something so new, and also where there were few long term studies (like what if it cures you of allergies, but gives you cancer late in life or something like that?) but the other doctors we consulted did not seem too concerned about these long term safety concerns, so we decided to give it a shot--

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By ditadiya on Sun, 01-01-12, 06:19

Hi

My 12 year old has very severe egg(off the charts) and some tree nut allergy..
I stumbled across this board while trying to look for some medicine that would atleast reduce her reaction in case of accidental ingestion.

Can someone pleaase share their experience with FAHF-2 and if it did help your kid outgrow their allergies?

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By Samsdad on Wed, 05-16-12, 21:40

Hi, I'm brand new to these types of forum. I would love to know whether Dr. Li and MSSM treat children such as my son to increase tolerance or whether she only does so as part of her clinical trials?

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By uma_ru on Mon, 10-15-12, 00:52

Hi alokorea - Thank you very much for post and explainign in detail about the appointment. How is your daughter doing with the pills ? Have you got the blood work again ?

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By alokorea on Tue, 10-16-12, 02:09

we figured out how to take the pills and she can swallow them all just with a glass of milk now. no real change in her overall ige level or peanut ige levels, yet, but last time we went to NYC we met another mom in the waiting room who had very good results after 18 months with her 4 year old boy. his milk, cashew, and peanut ige levels all decreased sharply over that time period. so we are hopeful. it has only been 6 months so far

the nighttime routine is quite elaborate; we now have two additional creams to administer since dr. li said that one of the issues is actually getting the drugs to the cells that need them. so in addition to ingesting the stuff, they also use the skin as a means of delivery.

and yes, dr. li will treat people in her clinic who are not enrolled in a trial

for those of you who are interested in how the fahf-2 clinical trials are going, check out this blog by a mother whose son is in the trial in chicago:

http://foodallergybitch.blogspot.com/2012_10_01_archive.html

very encouraging news on that end!

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By uma_ru on Tue, 10-16-12, 17:21

Hi Alokorea - Thank you very much for the update.
Please update again when you get the blood work done next time.

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