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Posted

I was reading this on the POTS website:

POTS patients may have a form of hidden anemia where the standard tests, such as hemoglobin and hematocrit, are relatively normal even though the patient has a severe anemia (Raj, Biaggioni, Yamhure, Black, Paranjape, Byrne & Robertson, 2005). A formal radioisotope dilution assessment of blood volumes was required to discover the red blood cell volume deficit documented in a 2005 study of POTS patients (Raj, et. al, 2005). The authors of this study state that it is possible a deficit in erythropoietin production might play a pathophysiological role in POTS, although this is not yet clear.

This has alwasy interested me because my cousin suffers from a type of anemia and her symptoms and mine are often very similar. She gets standing tachycardia from anemia.

Which lead me on to this chinese herb that is often used for Chronic fatigue syndrome and to 'build blood'. Not saying anyone should go out and just eat it, but this may be of interest:

http://www.ergo-log.com/dangguibuxuetang.html

Danggui Buxue Tang is a mixture of extracts from Radix astragali and Radix angelicae sinensis. It’s even mentioned in the Neiwaishang Bianhuo Lun handbook, written in 1247, where it is claimed to supplement the Qi – or life energy – and ‘feed the blood’. The researchers make it clear in their article that they interpret this quite literally. If you make up the supplement according to the ancient recipes, then it will boost EPO production.
Posted

Hi Rama,

I know this sounds odd but I looked up some of the herbal supplements on the market for horses that are labeled to help "blood" issues and sure enough they have Astragalus as one of the ingredients in two well respected brands. I bring this up because many of the common supplements these days that we use for people have been marketed for horses for many years before being approved for humans (glucosamine for example was used for almost 20 years in performance horses before being approved for human use.) It is amazing how much science is out there for our pets (horses in particular) that is not really publicized. I can often find much more info on herbal remedies when I look them up for horses because this is a much less regulated industry. "Blood Builders" are commonly sought for performance horses, particularly race horses, to maximize their performance so there is quite a lot of info and research out there if you are willing to make the leap from human to horse lingo.

Katie

Posted

My mom is anemic and took Epo for years. I wouldn't be surprised if related. I believe EPO was found to be dangerous in the US and is now only prescribed to cancer patients and not for regular anemia.

Posted

For a whle it was used for POTS here in Aus but they stopped due to safety concerns. But if they prove that its low in POTS then it would probably be less risky? HJust thinking out allowed here :)

Ive actually taken a herbal mixtuyre in the past that contained astragalus. But the TCM doc took it out after a while and I didnt notice any difference.

Posted

There was this study on erythropoietin in POTS patients: http://journals.lww.com/americantherapeutics/Abstract/publishahead/Erythropoietin_in_the_Treatment_of_Postural.99689.aspx?WT.mc_id=HPxADx20100319xMP

I only get the abstract to the study so I don't know why out of 200 patients they only selected 39 to study. But in that population of 39 patients it showed that 79% improved. Also it took about 6 months before they noticed their improvement. I don't think it would be easy to get this treatment, is there another way we can boost our EPO levels by ourselves?

Posted

In my case, part of my "Chinese" diagnosis is blood deficiency. I have not taken this formula though, since the underlying presentation was at a deeper level. I have been taking herbs that support the kidney which in turn supports the "sea of marrow" and the generation of blood. I think that this formula would be a "bandaid" or quick fix instead of addressing the real issue for many of us. These herbs aren't considered dangerous, but they are synergistic and effective only with the proper preparation like most of these formulas.

Posted

They have such diverse actions as well. As an example some of the herbs that I was taking were helping POTs but flaring up my Ank Spond through some sort of strange immune system activation.

I still believe that TCM offers so many interesting potentials for investigation, but caution is definately advised and a TCM specialist's involvements also a must.

I know a lot of CFS pateints just dive in and try stuff. Cats Claw, Rhodiola rosea, licorice, etc. When I told my doc way back that Id tried butchers broom without asking him he was quite annoyed with me. The fact that there are no know toxicitiy studies was the first point.

But to recall a quote from John F Kennedy after reportedly receiving a shot of amphetimine he used to treat his own fatigue and postural hypotension from Addison's disease, 'I dont care if its Horse %^&*! if it works!'

I think more research on EPO is warranted in POTS and gets too little attention. Its very expensive as a preparation but if there are herbal ways to boost it then it is interesting. Echinacea at very large doses also boosts EPO.

Posted

Most definately Chinese people would probably adopt TCM if they have no success with conventional medical treatments. I work with mainly chinese people and most of them take various TCM herbals daily, some for nothinbg in particular.

Posted

"Do people from Asian origins get this? Maybe they are treating people differently?"

I am in the Southern US and happened to find a really good acupuncturist/Oriental medicine doctor. It isn't just an Asian thing. As with all our doctors, it takes looking and interviewing. There are a lot of poorly trained TCM practitioners out there too, and they can do as much damage as any MD. I got really lucky and still ended up doing a lot of my own research for him. It has also taken me well over a year to see the gradual improvement that I have. Though my POTS is better, I have a whole bunch of other stuff that is screwed up endocrine-wise. My MDs were stumped, so I moved away from "traditional medicine" and to TCM.

Posted

My husband is Chinese, thus my children are half chinese all 3 have ANS dysfunction, we have tried many TCM, some have helped a little others not. My father in law was a village healer in the new territories in Hong Kong, he used some ancient form of hands on healing on many of the village folk, I think he was quite good at all this. Ironically he came down with a condition the main stream Dr.'s said was like Parkinson's, (lost in translation) but we now believe it was actually PAF. Unfortunately, due to the family basically having to chose Western medicine over TCM, we will never knew whether TCM might have helped reduce his symptoms or have helped him go on longer.

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