Ayurveda
 

Hello Everyone,

I am pretty new to this forum and I was overwhelmed to see the kind of information we have in this forum. My father who is 71yr old was diagnosed with low risk MDS RCMD in March 2011. His Hb was around 9.2 at the time of diagnosis and has been falling constantly since then. Couple of months back he had to take 2units of transfusion as his HB fell to 7.5. Currently it is at 8.2 and rest of his counts have been pretty stable. His bone marrow blast was 4% when he was diagnosed last year and couple of months back it was around 3%.He has been taking the generic brand of Erythropoeitin injections 200mcg ( Cresp ) every week since past 6months and we havent seen any improvement. He is also taking Danazol 600mg everyday and we believe might be helping him in keeping the blood counts stable.

He has been complaining about pain in the shoulders and back of his knee. Not sure if this has anything to do with MDS ? Entire family is pretty tensed and we fear the worst everyday. We consulted an Ayurveda doctor who thinks he can treat his problem. Basically he uses heavy metals as part of his treatment which includes silver and mercury. Was wondering if this is the right time to take this risk? Any suggestions are welcome.

Vikas

Vikas,
My mother is undergoing treatment in India.
Her Hematologist was against Ayurvedic medicines for the very reason that it contains metals which can be toxic and moreover there is no research to study the side effects / risks of ayurvedic medicines.He however did not raise any objections for any Homeopathic treatment.
Hope your Dad feels better and his counts remain stable.
take care,
RP

Vikas,

I'm sorry that your father has MDS, but I can honestly say that things could be a lot worse. Even though MDS is a serious condition, his MDS is the lower risk variety. His counts are stable, and that's very important. His blasts haven't increased, and 3% or 4% can be considered normal. His hemoglobin is low but not extremely low so if it doesn't drop much further you may be able to continue as you are now, with an occasional transfusion. Even though his diagnosis was stressful for the whole family, these are reasons to be optimistic.

The doctors are unlikely to consider aggressive treatments that could do more harm than good. The goal isn't to cure the MDS but to help your father maintain his life as it is now.

General pain can have so many causes that it's hard to judge its connection to his MDS. MDS itself doesn't hurt, although some pain can result from low blood counts. It's common for any 71-year-old, with or without MDS, to complain of pain around the joints, so you can certainly ask a doctor how best to identify the cause or treat it. If somebody other than his MDS doctor treats the pain in his shoulder and knee, be sure to let his MDS doctor know about it.

Iron level
 

Neil,

Thanks for the response. His ferritin level after transfusion went upto 1430 from 400 level. Is that something to worry about?

Thanks,
Vikas

Vikas;
Ferritin (iron in the blood) should be carefully watched. Too much iron can cause internal organ damage if left to go extremely high. There are chelating agents (gets rid of the iron) that can be prescribed by the Dr, but some are quite expensive. My husband gets Desferal after every transfusion to help rid his body of excess iron. He has received 176 units of blood since the 13th of August of 2011 - and many platelet transfusions as well.
I agree with Neil regarding his blood levels. Earl has to be transfused if his Hemoglobin is 8.5 or below, and today it was 7.4, so we are off to the hospital in the early AM to get 2 more units of blood and the Desferal afterward. Good Luck with your Dad.

Beth

Ferritin level
 

Beth,

I am so sorry to hear about your husband. My wishes are with him and i really hope he gets well soon. Does Desferal come with it's own side effects? Secondly, are there major side effects of using Arnesp on a regular basis?

Thanks,
Vikas

Vikas,

Doctors can monitor iron levels with simple serum ferritin or serum transferrin saturation tests. The most accurate test is a liver biopsy, but you want to avoid an invasive test like that unless it's absolutely necessary.

I'm repeatedly surprised at the variety of answers you'll hear from doctors about when to be concerned about iron buildup and when to start treatment. There seems to be no general consensus on how high is "too high".

You are welcome to read or post in the threads in the Transfusions and Iron Overload forum or start your own thread if you like. For example, there's a thread named Iron Overload and When to Start Treatment.

I don't have any experience of Ayurveda but am interested in alternative medicine (my specialism is nutrition) and everything I have ever read suggests that heavy metals are bad. One haematologist recently warned me to carefully check the origin of any herbal remedies in case they contain heavy metals, and many supplements traditionally used to improve health and immunity contain substances alleged to help chelate heavy metals - for instance wheatgrass, chlorella, IP6, and (according to my kinesiologist) shark liver oil. Colloidal silver is used by some alternative practitioners as a natural antibiotic, however in large amounts it can cause a condition called Argyria which turns your skin grey!

Some gentle yoga or physiotherapy may help with his joint pains, also I would be looking at the ergonomics of the furniture he is using, e.g. is he spending a lot of time on an uncomfortable chair or settee, is the chair the correct height, has he got enough lumbar support (which can affect shoulders and neck - I know from experience!) and is his bed comfortable.

Good luck

Did you have any success with Ayurvedic Doctor?
 

My father in law (77 years) is suffering from MDS with 10% blasts, RBC 0f 8 and Platelets of 55K. He also had heart surgery CABG(7 years back) & was fully normal. Recently he had Left ventrical dysfunction and is very weak & almost bed ridden now and is resting in the house.
Due to these multliple issues, heart specialist has adviced him not to go for chemotherapy.

Do you advise any good Ayurvedic Doctor who has succeeded in treating MDS & is preferably nearer to Bangalore.

The Banerji Protocol came up on another thread. I don't how close you are to their clinic though.

http://www.pbhrfindia.org/

Thanks Marlene for posting the reply.
Unfortunately this clinic is 2000kms away from my place.

Thanks once again.

How's your mom now and where is she treated in India? My mom is also battling mds. thanks

Is this just another medical scam? If so, why is this given any exposure? If it were as good as presented, it would be given mainstream consideration as a primary medication.

I am very ignorant of this treatment and have no personal opinion. However, my ex haem who is Indian warned me very clearly NEVER to have anything to do with this type of treatment. This warning just came out of the blue, it's not as if I had mentioned it or considered it.

It's not as if my haem was strictly main stream either. He used alternative medicine such as diet and supplements in conjunction with mainstream treatments.