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harveyc
03-12-2009, 09:35 PM
Some have caught on that my wife and I have been worried sick over our son Michael's health recently. His platelet levels are low (45,000-60,000 vs. normal range of 150,000-450,000). Last week the doctor examining him at a children's hospital felt that his spleen was enlarged and a second doctor examined him and agreed. Although the doctor didn't believe something such as cancer was likely, my other died nearly five years ago after having cancer found in her spleen (without cancer detected elsewhere, this was unheard of and got attention internationally among researchers).

Today Michael had a ultrasound of his spleen and it appeared completely normal! :D

The most likely cause now appears to be this:

Idiopathic thrombocytopenic purpura (ITP), a condition in which your immune system mistakenly identifies platelets as a threat and forms antibodies that attack them.

We're not out of the woods yet, but greatly relieved.

Thanks again,

Harvey

buzzwinder
03-12-2009, 09:46 PM
Thanks for the update Harvey, Our thoughts and prayers are with you and your family.

saltydad
03-12-2009, 11:16 PM
Harvey, while you said you're not out of the woods yet, the results to date are extremely encouraging. My thoughts and prayers are for all of you. Please keep us posted if it's not too intrusive. Thanks.

chong
03-13-2009, 01:54 AM
We will remember your son and your family in our prayers, and especially at Mass we'll remember you all in our special intentions.

Tog Tan
03-13-2009, 06:27 AM
Harv, we are all with you.

damaclese
03-13-2009, 07:11 AM
Harvey thank you for sharing that with us my hart goes out to you and your family i will pray for your sons speedy recovery don't dishearten there are many new treatments for all sorts of autoimmune disorders thees days
take care
Paul

bepah
03-13-2009, 09:58 AM
Harvey,

Our prayers are with you...

bigdog
03-13-2009, 10:34 AM
Very nice that you have some good news! So sorry that you and your family have been through so much loss and hardships...I'll pray for you.

Frank

austinl01
03-13-2009, 12:43 PM
Harvey, I hope your son's health will be 100% very soon. I'm glad that you got encouraging news. We'll be thinking about you and your family during this difficult time.

Patty in Wisc
03-13-2009, 02:14 PM
Thoughts & prayers coming your way Harvey.
How old is your son?

momoese
03-13-2009, 02:35 PM
Hope your son gets to feeling better soon Harvey, and glad to hear it wasn't cancer!

harveyc
03-13-2009, 02:36 PM
Michael is 11.

The phlebotomist gave Michael a bag of toys, etc. yesterday and his favorite was a wind-up car, though I thought it was pretty cool that he got a sheet of stickers of banana plants, monkeys, and bunches of bananas! :D Of course, I thought of you guys when I saw that!

Thanks,

Harvey

Dalmatiansoap
03-13-2009, 02:45 PM
Everything is going to be just fine!
Chins up Harvey!
You will be in our prayers.

Caloosamusa
03-13-2009, 02:58 PM
Harveyc,

May God watch over and protect your family and especially your son. Your prayers are being answered, in the name of the Lion of Judah.

You and your family will be in our prayers!

Chironex
03-14-2009, 02:11 PM
Harvey, I am praying for your sons recovery and for strength to you and your family. May God's blessings be with your family at this time of uncertainty.

harveyc
04-17-2009, 10:41 AM
Update: Michael went back to Children's Hospital on Wednesday and his platelet level increased to 97,000! :) I had told the doctor back on 3/12 about my plans to try having Michael eat Chinese black bean soup, something Tog had recommended to me (and supported by a local Chinese immigrant last night when I mentioned it to her) and the doctor had said "go for it". She also had said that there was some anecdotal evidence that vitamin C might help so we starting giving that to Michael as well. The nurses and doctors were all pleased to see the increase in platelets and I got the feeling we've got them talking about Chinese black bean soup! LOL Michael also had a bone marrow sample (taken under anesthesia) at 11:30 and preliminary results are all normal (the only way to diagnose ITP is to rule out other possibilities). Michael was discharged at about 1pm and we then drove to Point Reyes and started our backpacking trip, hitting the trail at 4pm and hiking 4.6 miles to set up camp. (The doctors had given this their okay.) We hiked about 9 miles yesterday. We had a blast! :D I'll try to post photos in another thread later when I get time. Hopefully, my old cheapie camera worked okay.

Dalmatiansoap
04-17-2009, 10:46 AM
Bravo!!
:woohoonaner:

Tog Tan
04-17-2009, 11:10 AM
Great to hear things are well. It will get better Harv! I had my sisters to ask their friends to do a run on the Chinese web(we don't read Chinese) and all came back with the positive belief of the effect of Chinese black beans in soup. All the best!

Ueberwinden
04-17-2009, 11:20 AM
Harvey,

Your son is in good hands at Childrens Hospital. When my son was attacked by a siberian husky at age 5, he was taken to Childrens Hospital in Cincinnati. They were very attentive to Derek's needs and to ours as traumatized parents. One of the nurses even took my wifes clothes that were soaked in blood and cleaned them. They were incredible with Derek, today he is a very happy seventeen year old who is about to graduate next school year, the scars are so faint that you can't see them. I have nothing but good things to say about Childrens. I will pray for your son Michael that he will continue to be able to grow up as if nothing was ever wrong in his young life. May the Lord have his hands on you and your family.

Michael

Bob
04-17-2009, 11:23 AM
Glad to hear the good news Harvey. Thanks for the update.

Chironex
04-17-2009, 11:33 AM
That is some fantastic news Harvey. Our continued prayers for your son and your family.
As a side note, I am quite a fan of TCM (traditional Chinese Medicine) and have recently read several articles about its adoption by many western physicians. Often considered as "alternative medicine" here, it is fast becoming more credible as it demonstrates its effectiveness.

JoeReal
04-17-2009, 12:04 PM
Glad to hear that Harvey! Praise God for the recovery. The hike to the Fremont mountains may have helped too, physically and spiritually.

CookieCows
04-17-2009, 02:16 PM
My prayers are with your family Harvey and hope for continued blessings be upon your son!! I love to hear good news.

I think I'll read up on the black bean soup. Maybe it would be something that would help my husband. He has MS and that's another disorder where the immune system goes haywire.

All the Best!
Deb

Mark Hall
04-17-2009, 02:23 PM
Nice one Harvey. Pleased for you :bananas_b

saltydad
04-17-2009, 02:28 PM
Excellent progress! <style>- /* Font Definitions */ @font-face {font-family:Garamond; panose-1:2 2 4 4 3 3 1 1 8 3; mso-font-charset:0; mso-generic-font-family:roman; mso-font-pitch:variable; mso-font-signature:647 0 0 0 159 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <o></o>

May He who blessed our ancestors, bless and heal Michael. May the Holy One in mercy strengthen him and heal him soon, body and soul, together with others who suffer illness. And let us say, amen.<o></o>

Chironex
04-17-2009, 02:29 PM
Excellent progress! <link rel="File-List" href="file:///C:%5CDOCUME%7E1%5CHP_ADM%7E1%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01 %5Cclip_filelist.xml"><!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><style> <!-- /* Font Definitions */ @font-face {font-family:Garamond; panose-1:2 2 4 4 3 3 1 1 8 3; mso-font-charset:0; mso-generic-font-family:roman; mso-font-pitch:variable; mso-font-signature:647 0 0 0 159 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <o>:p> </o>:p>
May He who blessed our ancestors, Abraham, Isaac, and Jacob, Sarah, Rebecca, Rachel, and Leah, bless and heal Michael. May the Holy One in mercy strengthen him and heal him soon, body and soul, together with others who suffer illness. And let us say, amen.<o>:p></o>:p>

Well said Salty. Amen

Patty in Wisc
04-17-2009, 10:21 PM
Harvey, I'm glad things are looking up. Your son is not going to let anything get him down. To go out hiking after all that ...he is just a super cool & tough guy!
Prayers do get answered :)

Bananaman88
04-17-2009, 11:07 PM
Harvey-somehow I missed your original post and did not realize your son had been ill. I'm very happy to hear that he got a good report. I'll add you and your family to my prayers. Take care.

conejov
04-17-2009, 11:52 PM
Harvey, Im glad to hear that your son is doing better. I wish all the best for you.

harveyc
04-27-2009, 02:26 AM
I've been trying to figure out what might be in the so-called Chinese black beans that could be benefiting my son. I've been unable to find anything online that mentions a connection between Chinese black bean soup (with or without pork bone) and blood platelet levels. A friend of mine purchased some and noted that these are very firm beans. He cooked them for 9 hours and they were still firm. I told him I usually just stop after 3 hours and figure that is as soft as they will get. By comparison, pinto beans are as soft after cooking an hour or maybe hour and a half, but I usually cook them for a few hours. I mentioned something to my friend that my son's primary doctor indicated the flavanoids in soybeans might provide a benefit and I thought he was confused, but my friend said he thought these might be Chinese black soybeans. After doing some checking online, I'm pretty sure that is what they are. They look just like the beans at Black Soybeans - buy Black Soybeans, manufacturers, exporters, suppliers (http://www.tootoo.com/d-rp11853701-Black_Soybeans/)

http://imgs.tootoo.com/13/80/13808dc7b37189a4d617ccdbfe1c5326.jpg

I did do some quick checking on the label for these black beans and noted that a 1/4 cup (95 gram) serving contains 26g of protein 24g of fiber, and 25% of the recommended daily value of iron (which makes it 4.5mg, I believe). The protein and fiber levels appear to be higher than a pinto bean.

Now, in searching for how black soybeans might affect platelet levels, I've come away from this confused and will need to check into this more tomorrow. Somethings seem to suggest that compounds might actually inhibit platelet aggregation. I'm getting confused on this and will need to read more to see what I might be missing. If anyone has a brain for this sort of thing, please check it out and let me know what you find.

Thanks,

Harvey

chong
04-27-2009, 04:10 AM
Harvey,
I was going to say that I didn't think that the Chinese black beans are the same as black soy beans, but I read the following article: Difference between Asian & Latin black beans (http://www.ochef.com/34.htm) . So, I guess they are black soy beans.

We regularly use salted black beans (called "taosi" - pronounced with the "i" almost silent), in cooked dishes. Dry black beans I believe is called the same (Tog - correct me if I'm wrong on this). We use the boiled dry unsalted black beans for desserts.

How much black beans does your son consume? And in what form?

Tog Tan
04-27-2009, 08:00 AM
Harvey,
I was going to say that I didn't think that the Chinese black beans are the same as black soy beans, but I read the following article: Difference between Asian & Latin black beans (http://www.ochef.com/34.htm) . So, I guess they are black soy beans.

We regularly use salted black beans (called "taosi" - pronounced with the "i" almost silent), in cooked dishes. Dry black beans I believe is called the same (Tog - correct me if I'm wrong on this). We use the boiled dry unsalted black beans for desserts.

How much black beans does your son consume? And in what form?

Chong,

Taosi = Bean in sauce, paste or puree. Tao = bean, Si = (believe it or not!) anything which is the broken down substance like turd. This is the literal Chinese meaning.

Hark Tao = the uncooked form of the bean. Hark = Dark/black.

harveyc
04-27-2009, 09:03 AM
Harvey,
I was going to say that I didn't think that the Chinese black beans are the same as black soy beans, but I read the following article: Difference between Asian & Latin black beans (http://www.ochef.com/34.htm) . So, I guess they are black soy beans.

We regularly use salted black beans (called "taosi" - pronounced with the "i" almost silent), in cooked dishes. Dry black beans I believe is called the same (Tog - correct me if I'm wrong on this). We use the boiled dry unsalted black beans for desserts.

How much black beans does your son consume? And in what form?

Thanks, Chong. I think I may have mentioned before, Michael has been eating Chinese black bean soup cooked with a pork bone (salted). We just boil the beans in water for a few hours with the pork bone, which is supposedly just for flavoring, but this is how the Chinese typically cook the beans, I've been told (the local restaurant owner says we can also add eel or some other things, but that it doesn't matter). Michael ate about half cup to a cup of them, usually with some cheddar cheese on top, about 4-6 times between around 3/12 and 4/5. I was hoping to have him eat them more regularly before his next hospital visit on 5/7 but we have been forgetful. Maybe I'll post myself a note now so we remember tonight. Michael had also been taking vitamin C pills (something the hospital specialist had said we might try), but we have discontinued that as he complained about the bitterness.

According to Tog and the local restaurant owner, the Chinese black bean soup (with pork bone, usually) is well known for its benefits of helping increase platelets (Togs words) and/or "making the blood thicker" (local restaurant owner). But I'm surprised to be unable to find anything about this online.

Thanks,

Harvey

Tog Tan
04-27-2009, 09:22 AM
According to Tog and the local restaurant owner, the Chinese black bean soup (with pork bone, usually) is well known for its benefits of helping increase platelets (Togs words) and/or "making the blood thicker" (local restaurant owner). But I'm surprised to be unable to find anything about this online.


Harv,

I doubt you will find anything on line about the effect of the black beans on blood platelets. Even when I had my sis friends check the Chinese web, all they said it was good. Chinese herbal/alternate medicine is not well documented. To us, culturally, it's a believe thingy handed down from generations. The reverse to blood build up to the Chinese is the Green beans. Many people who unknowingly drink this as a popular sweet dessert broth will feel giddy due to the drop of blood pressure.

It's the same when I see my Orang Asli friend who is 60 yrs old but look like 50. He will point out all the different plants to me for one's well being. I just let it go in one ear and come out the other cos of my lack of interest. This guy does daily 20 - 40 miles hikes into rough hilly terrain daily to collect stuff.

momoese
04-27-2009, 09:26 AM
But I'm surprised to be unable to find anything about this online.



Harvey

Maybe that's because your searching in English? Tog may be able to help find something that could then be translated.

Tog Tan
04-27-2009, 09:47 AM
Maybe that's because your searching in English? Tog may be able to help find something that could then be translated.

Mitchel,
Wrong Chinese dude! Me only speaking Chinese but not reading or writing any of it!
When such literature is found, it is very different from the English description of it's food quality. It will go like this; if you eat this...it will help stimulate the...and bring about the...of the ying(of ying-yang) effect of the overcoming of....

You get what I mean? It doesn't go into the detail of the composition of how many % of potassium, etc. I am not making fun of my own language, it's the way it goes. It goes very flowery in its description. I can't dig it so I stayed away from it all.

lorax
04-27-2009, 10:15 AM
Just looking at standard soy nutritional breakdowns, I can tell you the following: the super-high iron levels are aided by the high levels of B6 and Phosphorus - the first accellerates a specific haemoglobin creation pathway (which opens the door to the iron), and the second helps to ameliorate the anti-aggregation effect of the flavins and flavinoids present in the beans. Soy also helps to balance the sodium and potassium in the blood, which (so far as I can recall) doesn't affect the platelet count but does help make sure that the blood behaves properly (ie it clots when it should.) Equally, soy contains alpha-linolineic acid, but not EPA or DHA, which are the two long-chain fatty acids that inhibit clotting action.

If I'm remembering correctly, soy (of any colour) is also a valuable pre-biotic, and encourages the growth of friendly gut bacteria. Just about any doctor will tell you that good health starts in the gut - so it's likely a combination of a number of the effects possible from the soy that's helping.

harveyc
04-27-2009, 10:35 AM
Wow, thanks, Dr. Beth!

Dalmatiansoap
04-27-2009, 11:09 AM
So, my doughter has low Fe in blood and she is blood anemic. So will this soup raise Fe level in her blood?
:woohoonaner:

lorax
04-27-2009, 11:56 AM
It won't hurt, and most likely will help a great deal. I'd start supplementing her diet with the iron-rich foods, and some of the phosphorus-rich ones as well since P helps with iron absorption. Soy (the black has more iron, but regular soybeans are ridiculously high in it as well), beets, red meat (especially liver), and then white fishes (high phosphorus), figs, and coconut.

Dalmatiansoap
04-27-2009, 01:00 PM
THX Lorax,
problem is that we dont use soy here, in fact I have never tryed some. Only soy we have here is used in oil production so I dont know anything about it. Weird right?
But knowing myself I ll learn quick what I consider usefull.
:woohoonaner:

Tog Tan
04-27-2009, 01:15 PM
I guess because traditional Chinese and Asian alternate/herbal medicine has no meaning , like in no definite/logical analysis, it was not taken up seriously by the Western world until some decades ago. It is very much a per se situation whereby the medicine man's words are taken to heart.

Western belief is what is in the actual thing we are consuming in detailed analysis. In the past, most people cannot afford proper medical care and our region is rife with tropical diseases due to its weather. No one goes to a doctor, they all go to see the local sinseh of which the core group were trained in China or were from there. Then there wasn't much in the evolution of bacteria or viruses and the treatment were concentrated on the internal curing of the body system and physical injuries. As people were poor here, they ate whatever they can find and they were able to note the positive properties of the food consumed which in turn became medical cures, so as to say.

If you can remember some time back there was a big story of how a bunch of Chinese athletes outperformed everyone because the coach had them consume a high diet of turtles regularly. Since I was involved with reptiles for a long time, there is great truth in this though I don't advocate it. It's a very long story on its properties and I am just too lazy to tell. In fact one of the Chinese premier, Deng Siao Peng was eating 1 turtle a week (the Coura trifasciata to be exact) to boost his health. This turtle's meat is reputed to be a cancer retardant.

Though I am western/scientifically minded, I do resort to Chinese/Asian herbs when the need arises.

Let me give you guys an illustration on my part;
I was down with Chingkunya, a new viral mosquito borne disease from my jungle hikes last year. It's viral and it makes a person all cramped up, totally immobile cos the blood gets very thick. It has the same symptoms as malaria but when the outbreak came about, there was officially no cure. People infected went to the hospital for 2 weeks on the minimum and put on a drip with anti-biotics and the bill will come up to around $1,000. After that recovery is slow and for a month or two the person is extremely weak. Know what I did? First thing, I didn't want to go to the hospital and spend my money for no cure. I whacked in multiple doses of Neem (Azadiractha indica) tea daily to thin down my blood. Whoa! It made me dizzy like hell. I slept to rest and took cold showers when the high fever came. I got out of it in 1 week! After that I was speedy in my recovery without any weakness felt. I gave the neem tea to one of my plant collectors who stays near the jungle to help him out with his recovery. He told me that not even him but others like the Orang Asli who are bloody tough when infected, just cannot move!

It is something I find that if you were not brought up here, it near impossible to believe or understand! Like the Chinese saying goes; If you don't believe, don't do it! :ha:

Dalmatiansoap
04-27-2009, 01:23 PM
It is something I find that if you were not brought up here, it near impossible to believe or understand! Like the Chinese saying goes; If you don't believe, don't do it! :ha:

I agree, 100% thrue!

harveyc
04-27-2009, 01:49 PM
When I was reading last night and making some comparisons, I saw that pinto beans have about the same level of iron (or slightly higher) than the black soybean (27% of U.S. recommended daily value vs. 25% from 1/2 cup serving, or 95 grams). I did note that the black soybeans have higher protein and fiber levels than the pinto beans, but the other likely differences that might be helping out aren't listed on the package of black soybeans.

I did read that vitamin C helps with the absorption of iron, so that's something you might want to look into Ante.

lorax
04-27-2009, 01:52 PM
Yup, and too much Calcium impedes Iron absorption (and the other way around; beets are not so good for osteoporotics...)

harveyc
04-27-2009, 03:16 PM
Does anybody here have a subscription for an online journal service? If so, I would some details from this (not the entire publication, just an explanation if this is something that pertains to what I'm looking for):

ScienceDirect - Food Chemistry : Characterisation of anthocyanins in the black soybean (Glycine max L.) by HPLC-DAD-ESI/MS analysis (http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T6R-4SKB3J9-2&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=203b9733a9b6f131b822f3c781ec59ee)

The Google search summary says this of the above paper:

Food Chemistry : Characterisation of anthocyanins in the black ...
The black soybean has been used in traditional Chinese medicine in particular, ..... on platelet aggregation and adhesiveness, Fitoterapa 61 (1990), pp. ...
linkinghub.elsevier.com/retrieve/pii/S0308814608006183 - Similar pages -
by JH Lee - 2009

and, in a link below that one (for the same paper):

Food Chemistry : In vitro antioxidant activity of anthocyanins of ...
Black soybean seed coat of Mallika (M) and Cikuray (C) was extracted using ..... Platelet-activating factor acetylhydrolase (PAF-AH) activity in patients ...
linkinghub.elsevier.com/retrieve/pii/S030881460800736X - Similar pages -
by IR Astadi - 2008

I might buy the paper if I really knew it would be useful but these crazy abstracts, etc. give just enough to tease us.

There are many more scholarly papers published that might be helpful: chinese black soybean platelet - Google Scholar (http://scholar.google.com/scholar?q=chinese+black+soybean+platelet&hl=en&lr=&btnG=Search)

Thanks,

Harvey

Ueberwinden
04-27-2009, 04:08 PM
Tog,

How in the world did you manage to drink neem tea?? The pure neem I use here for white flies and Spider mites smells terrible and looks even worse. I use fabric softener to mask the smell which is kind of garlic like, and it is real thick. I have heard that in India they use neem for all kinds of things, but I never though of drinking it. Yuk!!

Michael

Tog Tan
04-27-2009, 04:56 PM
Tog,

How in the world did you manage to drink neem tea?? The pure neem I use here for white flies and Spider mites smells terrible and looks even worse. I use fabric softener to mask the smell which is kind of garlic like, and it is real thick. I have heard that in India they use neem for all kinds of things, but I never though of drinking it. Yuk!!

Michael

Hi Michael!
You are beginning to be like a 'naner sd! Popping up every now and then...
The first time's no joke. After that, not worse then taking a straight big mug of brandy minus the alcohol vapor and intoxication. Besides, it's great for health. I take 3 days in a row and stop for 2, then go again. Great for the immune system and the cleansing of the liver and lots more. It's a leaf drink, think of bitter tea! :ha:
Pure neem oil? Great for birth control.....not a joke! I don't use it, :ha: but in India it's still being used. :ha::ha::ha:

harveyc
04-27-2009, 06:22 PM
Please, let's stay on black beans here (or other things that may be helpful to my son's low platelet condition). I'm trying to learn more about this. I'm interested in these other TCM discussions, but would rather see it in another thread (or see Tog in person to witness it first-hand).

Thanks in advance,

Harvey

harveyc
05-08-2009, 12:57 AM
Well, today was full of emotions. Michael had a follow-up with his hematologist at the hospital clinic today. He has been eating his black bean soup pretty regularly and we were somewhat hopeful that his platelet levels would be even higher than the 97,000 level on 4/15. We waited longer than normal to see the hematologist and eventually the counselor came to visit us. When the hematologist came in she told us the platelet levels had dropped to 35,000. Gah! She said she was still waiting to see the blood smear (slide) to take a look and then came in later to say the lab indicated there was clumping in the tissue so even the platelet count was inaccurate. They know there were more than 35,000, but there is no way for them to tell how much more. Since the lab there was already closed, we would have had to go to another lab and hope that they would have better success (sometimes a different preservative can be used in the sample to reduce clumping). The doctor didn't see a need to do that since Michael isn't showing any symptoms so we just decided to wait until a follow-up visit next month.

The hematologist did say that this is acting as if it is a case of chronic ITP so we are hoping mostly that Michael's case just remains somewhat mild.

Thanks,

Harvey

Caloosamusa
05-08-2009, 06:08 AM
May the healing touch of the living God continue to be upon your son and your family, in the name of the lion of the tribe of Judah. :2239:

banfan
05-08-2009, 03:38 PM
Hopefully an herbal remedy will bring relief. My neighbor has many Anamu plants growing on his property. Anamu is reported to help the liver and has many other benefits. After you Google ANAMU and check with the doctor who is providing care to your son, and wish to try it, I would be able to provide you with seeds so you could grow your own. I chew and swallow a few leaves several times each week. It also has a garlic flavor but is not objectionable.

Patty in Wisc
05-08-2009, 09:23 PM
Hope all goes well Harvey. Your son is a real trooper!
Hang in there.

harveyc
05-09-2009, 01:16 AM
Hopefully an herbal remedy will bring relief. My neighbor has many Anamu plants growing on his property. Anamu is reported to help the liver and has many other benefits. After you Google ANAMU and check with the doctor who is providing care to your son, and wish to try it, I would be able to provide you with seeds so you could grow your own. I chew and swallow a few leaves several times each week. It also has a garlic flavor but is not objectionable.

I did check this out and it seems to reduce clumping of platelets which, I believe, would not be a good thing. ITP patients have fewer platelets but their platelets are characterized by being newer, larger, and stickier, so the increased clumping helps compensate for their lower levels.

harveyc
06-19-2009, 03:11 PM
After reading comments on an ITP support forum last month, I took a look at Michael's blood test results more closely and noted that his tests were performed from 31 minutes to over an hour after the sample was drawn. Even people with normal blood counts will have their samples start clumping to a degree after 20 minutes but it can be especially problematic for ITP patients. To avoid this problem, some hematologists run their own samples and I've heard from a couple of patients who say they get their results in 2 minutes. Another option is using a sample tube with citric acid as a preservative as this helps prevent clumping. These tubes usually have a blue top, vs. a purple top tube normally being used. Michael had said they had been putting his blood samples in tubes with purple tops.

Michael had to have a biopsy performed on a suspicious mole last week and in preparation for that his primary doctor wanted him to have an updated blood test. I suggested to the doctor that he write a lab order requesting the blue top tube and he agreed. The phlebotomist initially ignored that when we went in to the lab on 6/5 until I brought it to her attention. We received the results on 6/9 and Michael's count jumped up to 177,000! This is above the lower range of normal (150,000-450,000). I was hesitant to mention it to too many folks since Michael also had some immunization shots on 5/19 and I had wondered if this might have temporarily boosted his platelet count (though sometimes MMR shots are thought to be something that may lead to ITP).

I got word to Michael's hematologist earlier this week about the good report earlier this month and to ask if we could get a similar lab order from her in preparation for today's visit. She agreed to write a standing order for samples to be placed in both blue topped and purple topped tubes and for the tests to be performed STAT (run in the hospital vs. sent out to a contract lab). Today we visited the hematologist and learned that Michael's reading from yesterday's sample was 162,000! :D The doctor had wanted counts from both tubes to make a comparison but they could only print out one report. They made a call and, if I understood correctly, one sample read at 174,000. They're going to discuss this procedure with the lab further.

The hematologist suggested we have another test run on 7/2 before Michael goes to Boy Scout summer camp to help reduce any anxiety we may have and said that we can probably cut back to tests every 3-6 months if they remain at these levels.

The hematologist asked if we had done anything differently other than Tog's Chinese black bean soup and I told her that was it, along with vitamin C. I also told her about the death of my dear friend Tog earlier this week and we would remember him each time Michael ate these black beans. We're still not sure if the black beans have helped and how much of the earlier low counts were due to poor testing.

Thanks again for the support,

Harv*

*Only some of my close friends like Tog have called me Harv. Another good friend, a college buddy who was my best man, also always calls me Harv. His birthday is also on 6/23 just like Tog (but 1957, vs. 1956).

momoese
06-19-2009, 03:28 PM
That's awesome and also great news for others having the same tests! Way to go Harvey. This has me wondering about the recent tests on one of our dogs. I'll talk to my wife about it later as she works for a doctor and does lots of blood work.

Whether or not Tog's Black Bean soup is making the difference, it's still very cool that you will be able to remember him for something far more important than bananas.

harveyc
06-28-2009, 10:26 PM
FYI - Michael also had a suspicious-looking mole removed a couple of weeks ago and the biopsy side was sent off to UCSF for a second opinion. That gave us more worries, though we were told that is pretty common. Thankfully, we got the final report (while we were off hiking) and it came back benign. :D Our worry levels are about the lowest they've been for four months now.

Thanks again,

Harvey

saltydad
06-28-2009, 10:37 PM
That's great news!

Bananaman88
06-29-2009, 06:32 AM
Harvey- we continue to wish the best for your family.

island cassie
06-29-2009, 08:27 AM
Thanks for keeping us posted Harvey - sounds like things are taking a turn for the better! Our thoughts are with you!

Caloosamusa
06-29-2009, 09:01 AM
Our prayers are for you and your family. They have been answered! :2239:

harveyc
10-16-2009, 07:39 PM
Here is a final update on Michael’s case of “low platelets”, previously tentatively diagnosed as “ITP” (Idiopathic thrombocytopenic purpura, if you insist).

Back around May or so when I noticed that Michael’s lab results run a little slower than others were giving lower platelet count numbers, we have been getting lab tests done using a tube with a blue top containing a different preservative (citric acid) as this prevents clumping and helps ensure accurate platelet counts (the machine counting the platelets can’t count them accurately if they are clumped together). We’ve had several good tests since then, but could never say for sure if the increase was due solely to the prevention of clumping or if his platelet levels had indeed increased somewhat.

I took Michael to John Muir Hospital for his blood draw on Wednesday in preparation for an appointment for today with his hematologist from Children’s Hospital (she comes to John Muir once a month). Since the lab also collects a sample into a purple topped tube at the same time for other data (this is the standard sample tube used for everyone), I asked if they could wait about an hour and provide us with a platelet count from that tube as well. After getting the chance to speak to several people at the lab and explaining my desire to get a definitive answer on this, they told me that issuing two numbers would require two reports and this would require the doctor requesting it. They called up Children’s Hospital and someone from there (don’t know who, it wasn’t Michael’s doctor) did fax an order over requesting the procedures I had asked for. Yesterday Michael’s hematologist called me and said she was surprised to see two lab reports so I explained what had happened. She said that the tests do show very clearly that the low counts all along were due to clumping problems, not because of actual low platelet levels. Michael’s count from Wednesday was 230 with the blue tube, 38 with the purple tube. Normal is 150-450. The hematologist explained that some people will have antibodies that will react differently and cause clumping more readily and that there was no need for further follow-up. Unfortunately, there was really never any need for Michaels ultrasound in February and bone marrow sample in April. We’re relieved, but also frustrated that we (Michael especially) had to go through all of this.

If you ever know of someone with a low platelet count, suggest to them to ask the doctor to tell the lab to look for clumping and to consider using a blue topped tube. Michael’s lab results dropped a great deal (97,000 to 44,000) from April to May but we waited at the hospital for over an hour for those results. When I asked the doctor back then if the problem could have been clumping, she called the lab and they acknowledged there was significant clumping and that the results were invalid. Still, they had already issued a report with bad numbers. I’ve had a career in “questioning numbers” (I'm retired from auditing in agricultural lending) so maybe that helped resolve Michael’s case.

Thanks for all of the prayers and good wishes,

Harvey, Linda, and Michael

damaclese
10-17-2009, 07:14 AM
I'm so happy that you discovered this it makes sense to me it just gos to show you that as a patient you have to be active in your relationships with medical people you cant just site back idle wile they make all the life altering decisions about your health care

i had a surgeon tell me this long ago when i was under treatment for my mastectomy it was a lesson i learned in the face of some pretty grim treatment by another surgeon whom was a dumb ass in my opinion

Just as an interesting side note Living in Nevada I'm 3 times more likely to be misdiagnosed or even treated for a condition i don't have accordering to the New England Journal of medicine scary! a

I don't mean to sound paranoid but after a mager illness you learn pretty quickly to take what people tell you with a grain of salt

harveyc
10-17-2009, 10:15 AM
A friend of mine is an attorney working for a very large company in the labor division with disabilities, etc. and says he's worked with suits due to doctor malpractice all the time. He doesn't trust many doctors after all he has seen. He also shared an experience where his barber diagnosed his young son's condition of eczema as being due to a vitamin D deficiency while the son's doctor had offered drugs and suggested they get rid of their cat which was of no help.

I really think if we have government managed health care this would just get worse.

Patty in Wisc
10-17-2009, 03:28 PM
Harvey, I'm proud of you for persuing this & doing your own investigation! If not for you, Michael would've gone thru more crap. Sometimes, ppl are too dependant on what the doctor says. Too bad you guys had to go thru all that. Glad things are looking up & thanks for posting the info of what you learned :)

harveyc
10-17-2009, 03:38 PM
And Linda thinks I'm just stubborn to be cause trouble! LOL