Chinese herbal medicine

[Chirley]

Hi, I know it's too early to make any conclusions but I was given some herbal medicine by someone who used to be a medical doctor in China. I'm a born sceptic and nearly threw it away, I even suspected it might cause more problems. Anyway, I brewed up a teaspoon of this stuff morning and night and sipped it like a cup of tea. (absolutely foul). It was only enough to last 5 days.

I developed a rash on my arms and body but overall started feeling a lot better. Curiosity got the better of me and I asked my GP for a blood test just to see what was happening.

Hb 97
Retics 119 !!!
WCC 2.4
Neuts 1.24!!!
Lymphs 0.4

These are the best results I have had in years. I have never had a retic count near the upper end of normal let alone above normal. This is so good that I rang and cancelled my blood transfusion booked for next Tuesday.

I know that this may just be a coincidence and perhaps transient but I hope it's the start of a permanent improvement.

Maybe I should open my mind to alternative therapies. I'm really impressed with this herbal medicine, I just wish I had gotten this chinese doctors' last name and address. She also did some acupressure and told me that it would only be a temporary feel good result. She was right. I felt better all that day, back to usual the next day and then an improvement every day after that as the herbs kicked in.

I'll let you know what my next test shows.

Chirley

[Birgitta-A]

Hi Chirley,
Very interesting with your improved count eventually due to herbal tea ! As far as I understand a lot of drugs and food can decrease the platelets. Did this tea have any impact on your platelets? Do you know anything about the herbs in the tea?
Kind regards
Birgitta-A
Last platelet count 33 after treatment with Exjade

[fibogann]

Hi Brigitta

From my private research and subsequent use of herbs in the treatment of my son's AA, a herb commonly available used for treating AA is the astralagus, which is believed to be a natural telomerase activator.

It is generally believed that short telomeres result in chromosome instability, hence there is also a potential mechanism for telomere lengthening to protect against blood diseases such as AA and blood cancers in astralagus.

You can get more details by googling for astralagus or from wikipedia as well.

Some interesting studies on aplastic anemia in relation to tolemerase on this include:

Telomerase Mutations in Aplastic Anemia

Telomerase gene mutation screening in Chinese patients with aplastic anemia

Mutations in telomerase catalytic protein in Japanese children with aplastic anemia"

Regards

[Birgitta-A]

Hi Peter,
Thank you for the info! I have searched Astragalus and not found anything negative for platelets or risk for leucemic transformation - only positive results:
http://www.mskcc.org/mskcc/html/69128.cfm
Kind regards
Birgitta-A

[fibogann]

Hi Brigitta,

Thanks indeed for the very interesting link on astralagus from Sloan Kettering.It was very informative and useful.

I note it does mention a contraindication for the use of astralagus for those on immunosuppresants including cyclosporine. So that should be highlighted to the members here and researched deeper, esp. for anyone contemplating the use of the herb.

However, in the case of my son, the doctor ordered an abrupt stop to the use of cyclosporine a couple of weeks after ATG when a trough test indicate excess cyclosporine until the level reached normal again - and we were given a choice to restart the cyclosporine. We were warned that if we stop the use of cyclosporine, the improving blood counts including platelets might plummet and my son might need to have another round of the ATG later if that occurred.

On the other hand, we had assurances from our complementary master herbalist and MD that the use of the herbs and shark liver oil will sustain the improvement to the blood counts. It was one of the hardest decisions in my life- to restart the cyclosporine or to leave it.

We decided not to re-start the cyclosporine but went along with the herbs and shark liver oil, and indeed in our case,( it might be different in other cases ) we saw the blood counts improving very well instead of plummeting - so that was a great relief to say the least.

Our case might be unorthrodox and the actions we took might even appear "strange" or "bewildering" to others esp those who do not see herbs as a way in assisting in the recovery process, so everyone in need should approach this subject carefully and prayerfully- and with much consideration and discussion with all treating doctors.

Regards,

[Birgitta-A]

Hi Peter,
Very impressing effect of herbs and shark liver oil !

You know I have MDS with pancytopenia (all counts low). This means that I could try Astragalus but not shark liver oil because that kind of drugs increase bleeding.

When I was young more than 50 years ago I worked in a lab where they treated children with leukemia with shark liver oil and the drug had positive effects. Unfortunately the doctor that was leading the trial got very ill and the drug Ecomer was only approved as a supplement. I bought it for a sister with colon cancer and her white blood cells improved during radiation and chemo.

For the moment I am trying one tablet of Exjade/day alternating with Desferal - both drugs decrease iron overload (I have got 106 units of packed red blood cells since dx May 2006) - so I won't try Astragalus now but wait till I know what effect this off label combination will have.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, tx dependent, Desferal and Exjade for iron overload and Neupogen 2 injections/week for low white blood cells. Asymptomatic.

[leeslay]

Birgitta-A,

You have iron overload and are only taking one Exjade tablet a day? I am on 11 tablets a day!!! My Dr office hadn't ever checked my levels after numerous transfusions and when they finally checked it it was skyrocketing. I have to tell them to check my levels for some reason, they just can't remember to check it. So it is really frustrating because what else should they be checking thats not being checked?

Anyway I am going to look into the supplements being talked about sounds interesting. My goal right now is to get off the prednisone!!!!

[Birgitta-A]

Hi Lee,
Too bad that your Dr didn't check your ferritin level ! I think 11 tablets/day is high - you should not take more than 30 mg/kg/day. The normal dose is 20 mg/kg/day.

I should take 5 tablets/day and started with 1 tabl the first week with control of WBCs and creatinin. Next week I took 2 tablets a day and so on. When I reached 4 tablets a day my neutrophils decreased and I had to stop taking Exjade.

Exjade had a positive effect on my HGB and my transfusion interval increased from 4 to 6 weeks. I asked my Dr if I could take 1 tablet Exjade/day the days I didn't get Desferal infusion (in Sweden we get Desferal iv from a small home pump during 4 days with transfusions). He said it was OK though it is off label. If the effect is positive I will try 2 tablets/day.

Don't take shark liver oil if your platelets are low - that kind of drugs can increase bleeding. If you will try Astragalus start with a very low dose and don't increase the dose till your counts are controlled because we are all different and everything can have a negative effect on our bone marrow.

Good luck!
Kind regards
Birgitta-A

[Marlene]

Your doc should be monitoring your kidney and liver function as well as your blood counts and iron status while on Exjade. When John first started Exjade, he had blood work done weekly and then went to monthly.

I too am surprised at 11 tablets a day. Like Birgitta says, 20mg per kilogram of weight is the standard. So for example.... if you weighed 150 lbs, that's 68 kilograms. So a standard dose would come out to be 1360 mg. And the highest dose would be 2040 mg.

Take care,
Marlene

[Birgitta-A]

Hi again Lee,
I forgot to ask you if you are taking Exjade 125, 250 or 500 mg? I am taking 250 mg.
Kind regards
Birgitta-A

[leeslay]

Today I went in and asked about my levels again. They haven't checked the iron levels in about 2 months - very frustrating. So they pulled for that today. The bottle says 125 so thats 1375 a day?! I think thats too much. I asked him and he wants to check my levels before he decreases it. I am very frustrated about everything with my Dr.s office. I have to tell them to what to draw for, what levels they need to be keeping track of - cyclosporine levels, etc. If I were better I would go to Denver and see the Dr up there. But its a 4 hour round trip drive and I'm not up to it right now. This time around I am so swollen and bloated I feel like I'm going to pop!! I am going to start decreasing my prednisone to get off completely within the next two weeks. Which is fine with me. I hate prednisone.

[Birgitta-A]

Hi Lee,
Too bad that you have to check everything yourself and can't trust your Doctor !

Your Exjade dose is eventually correct - it depends on your weight. Hope they have controlled your creatinine (kidney function):
http://www.medterms.com/script/main/...ticlekey=12550

Nobody likes Prednisone - I am a member of a forum for patients with low platelets. They all hate Prednisone . They call it Pred or Dread because of all adverse reactions.
Kind regards
Birgitta-A

[Lisa V]

Originally Posted by Birgitta-A

Don't take shark liver oil if your platelets are low - that kind of drugs can increase bleeding.

But isn't that what it is for, to increase platelets?

[Birgitta-A]

Hi Lisa,
You know shark liver oil contains Omega-3 that can increase bleeding as you can see at this warning list for patients with low platelets.
http://www.pdsa.org/itp-information/itp-warnings.html
Kind regards
Birgitta-A

[Marlene]

John's been using omega 3 oils from pre SAA and after treatment. It has never bothered his platelets. At one point, our doc said to stop the omega oil as trial to see if was effecting them and it wasn't, so he went back on it. Essential Fatty acids like omega 3 are so important to so healing and with all his nerve damage, we kept using nutrients to help heal the nerves. That included antioxidants that many times are said to thin the blood also. We also monitored his clotting times from time to time to make sure.

At one point, he did try shark oil but it did not have effect on his platelet. We have found that no supplement makes a difference in his CBC either way and stopped trying to find something that does and just focus improving overall health.

Once John was able to sustain 8K platelets on his own, we found that his own 8K platelets worked better than 30K of someone else's.

It's kind of funny in that before we knew he had SAA, he was having lots of headaches. He was taking aspirin once or twice a day!!!! Yikes!!! His platelets back then were 10K and he still didn't have bleeding. He did have petichia on his lower legs though but we were clueless as to what that was.

[Birgitta-A]

Hi Marlene,
Yes, we are all different. I get small bleedings (petechiaes) round the eyes if I drink green tea - a present some years ago. Then I can't eat garlic or onion without getting these small bleeding.

John must have well functioning platelets - mine are few and dysfunctional.
Kind regards
Birgitta-A

[Marlene]

Hi Birgitta-A,

Yes, it's amazing how well he did such low platelets. And I too agree, they functioned really well for him. As did his immune system when his ANC was below 1 for about a year and half after treatment. I cannot imagine not using onions or garlic!!! Not a day goes by that one or both go into lunch or dinner for us.

Take care,

Marlene

[fibogann]

Originally Posted by Birgitta-A

Hi Lisa,
You know shark liver oil contains Omega-3 that can increase bleeding as you can see at this warning list for patients with low platelets.
http://www.pdsa.org/itp-information/itp-warnings.html
Kind regards
Birgitta-A

The essential part of shark liver oil (SLO) which is believed to assist in increasing platelets is squalene and alkoxyglycerols which is present in far more quantities than the trace presence of Omega-3 fatty acids.

In contrast, commercial Fish Oils ( not shark liver oils) would contain essentially Omega-3 which can lead to blood thinning and increased risk of bleeding, and which has to be carefully considered if used by aplastic anemia patients, as far as I know of.

One note of interest though - it has been stated that SLO has no side effects in dosages of 100 mg three times daily. However, a report on SLO-induced pneumonia in pigs has been described, as well as a case report concerning shark oil pneumonia.

Following are extracts detailing some interactions of shark liver oil

Interactions of Shark Liver Oil ( Extract from American Cancer Society)

Although many people have taken shark liver oil, the issue of potential toxicity at the usual doses has not been well studied. Some mild digestive problems such as nausea, upset stomach, and diarrhea have been reported. Some animal studies have found that shark liver oil and its components may raise blood cholesterol levels. A Japanese study found some shark liver oil supplements to be contaminated with polychlorinated biphenyls (PCBs) and polybrominated diphenyl ethers (PBDEs). PCBs can have harmful effects in humans and may increase the risk of some types of cancer. People with seafood allergies may also react to shark liver oil.

Relying on this type of treatment alone and avoiding or delaying conventional medical care for cancer may have serious health consequences.


Fish Oils Interactions with Drugs and Herbal Supplements(Extract from drugs.com)

Interactions with Drugs

In theory, omega-3 fatty acids may increase the risk of bleeding when taken with drugs that increase the risk of bleeding. Some examples include aspirin, anticoagulants ("blood thinners") such as warfarin (Coumadin®) or heparin, anti-platelet drugs such as clopidogrel (Plavix®), and non-steroidal anti-inflammatory drugs such as ibuprofen (Motrin®, Advil®) or naproxen (Naprosyn®, Aleve®).

Based on human studies, omega-3 fatty acids may lower blood pressure and add to the effects of drugs that may also affect blood pressure.

Fish oil supplements may lower blood sugar levels a small amount. Caution is advised when using medications that may also lower blood sugar. Patients taking drugs for diabetes by mouth or insulin should be monitored closely by a qualified healthcare provider. Medication adjustments may be necessary.

Omega-3 fatty acids lower triglyceride levels, but can actually increase (worsen) low-density lipoprotein (LDL/"bad cholesterol") levels by a small amount. Therefore, omega-3 fatty acids may add to the triglyceride-lowering effects of agents like niacin/nicotinic acid, fibrates such as gemfibrozil (Lopid®), or resins such as cholestyramine (Questran®). However, omega-3 fatty acids may work against the LDL-lowering properties of "statin" drugs like atorvastatin (Lipitor®) and lovastatin (Mevacor®).

Fish oil taken for many months may cause a deficiency of vitamin E, and therefore vitamin E is added to many commercial fish oil products. As a result, regular use of vitamin E-enriched products may lead to elevated levels of this fat-soluble vitamin. Fish liver oil contains the fat-soluble vitamins A and D, and therefore fish liver oil products (such as cod liver oil) may increase the risk of vitamin A or D toxicity. Since fat-soluble vitamins can build up in the body and cause toxicity, patients taking multiple vitamins regularly or in high doses should discuss this risk with their healthcare practitioners

[Birgitta-A]

Hi Peter,
Thank you for all info about shark liver oil and omega-3 fatty acids - I have seen very good results with shark liver oil myself in children with leukemia many year ago but I dare not take it myself due to the low potential risk for bleeding. You know infections and bleedings are the two main death causes in MDS.
Kind regards
Birgitta-A

[fibogann]

Originally Posted by Birgitta-A

Hi Peter,
Thank you for all info about shark liver oil and omega-3 fatty acids - I have seen very good results with shark liver oil myself in children with leukemia many year ago but I dare not take it myself due to the low potential risk for bleeding. You know infections and bleedings are the two main death causes in MDS.
Kind regards
Birgitta-A

Hi Birgitta-A,

Thank you for your post.

I can understand your reasons why you do not use shark liver oil(SLO) in MDS owing to the fear of bleeding.

I have observed in at least one case of AML where the patient finally subcummed to pneumonia as a related disease, and he was trying a lot of other things in the last week as he was deemed terminal, and that included taking shark liver oil and a host of other supplements. To this day, I'm reminded of the reports of SLO induced pneumonia in pigs and had always wondered whether the SLO was in any way a contributory factor in this case. However, I have also read about the better response to the use of SLO in many reports and especially that of squalene. To this day, my son takes 1000mg of SLO daily as a supplement and has rarely been sick.

I wish the best of health to everyone on this forum

[lotusbud]

Personally I consider everything going into my mouth as "food". Just some foods have better nutritional value than others. So I have always kept away from foods that look like a chemical soup (read the ingredients).
Is it not drug a very concentrated substance?
So too, oranges have a lot of vitamin-C.
I have always played with various alternatives, according to what I feel. Now the internet is such an excellent source of information.
There are a lot food/fruits out there considered "superfoods". Anybody has experience with those? Supposed to be packed with antioxidants, vitamins, cancer-wiping compounds, like noni-fruit.

[Robi1Knobi]

I read your post on superfoods and thought u might be interested in looking at the studies on www.helpyourselfwithjuiceplus.com.

[fibogann]

Originally Posted by Robi1Knobi

I read your post on superfoods and thought u might be interested in looking at the studies on www.helpyourselfwithjuiceplus.com.

During a recent visit to Malaysia, I was introduced by a food nutritionist ( and a vegetarian) to a book called " "Eat Right For Your Blood Type" by Dr Peter D'Adamo. While the ideas might seem "a little strange or even revolutionary" ( my own comments ), there are within the pages of the book, stories of people with various medical conditions and blood diseases who received help from matching the eating of various foods to their blood group. You may like to check that book out as well if you are looking at superfoods and matching foods to your condition.

[glitterandlace]

Bridgette can you p[lease share the info of the site for people with low platelets. I would like to visit that site.... Thanxxxx.=-)

[joesmith]

Originally Posted by Birgitta-A

Hi Peter,
Very impressing effect of herbs and shark liver oil !

You know I have MDS with pancytopenia (all counts low). This means that I could try Astragalus but not shark liver oil because that kind of drugs increase bleeding.

When I was young more than 50 years ago I worked in a lab where they treated children with leukemia with shark liver oil and the drug had positive effects. Unfortunately the doctor that was leading the trial got very ill and the drug Ecomer was only approved as a supplement. I bought it for a sister with colon cancer and her white blood cells improved during radiation and chemo.

For the moment I am trying one tablet of Exjade/day alternating with Desferal - both drugs decrease iron overload (I have got 106 units of packed red blood cells since dx May 2006) - so I won't try Astragalus now but wait till I know what effect this off label combination will have.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, tx dependent, Desferal and Exjade for iron overload and Neupogen 2 injections/week for low white blood cells. Asymptomatic.

Hi Birgitta - Did Astragalus help you with your low WBC count? If so what dosage and brand did you take.