This post is my first but I've read many of the posts/topics on here since I was first diagnosed with ITP back in January 2014. Since then, I have tried steroid therapy (both the traditional prednisone and the rapid fire dexa), IVIG, had a platelet transfusion (felt terrible for days afterward) and then decided to go a more natural/alternative route since the Rituxin route and the splenectomy just didn't feel like the right choice for me.
Realizing that each individual ITP patient has different outcomes using different methods of treatment, I had to come to terms with the fact that I was just not comfortable pursuing the traditional routes. As someone who tries to eat clean, takes supplements, practices yoga and qi gong, I needed to explore different possibilities as far as treatments went.
I've tried Chinese herbs along with acupuncture back in September and, initially, had a nice rise in my platelet count to almost 50,000. (My count usually hovers between 4,000 - 10,000 when I am not treating my ITP.) In December, I went off the herbs/acupuncture and tried green tea along with woolly grass tea and my count averaged between 4,000-12,000. I also started a meditation class during that time.
In mid-January, I read a post on another board about an ITP patient in India who had successfully raised her count by drinking aloe vera. Around the same time, I read another article about the positive effect that Liposomal vitamin C had on others who suffered with auto-immune diseases. So, I decided to start a new regimen using both the Liposomal Vitamin C and aloe vera along with collodial silver. My blood test the last week in January showed my platelet count at 4,000 after I had been on the new regimen about a week. Though disappointed, I decided that I should give it more time.
I am so glad that I did! Yesterday, I went in for my monthly blood test (I made the decision at the end of December that the stress of weekly blood tests on my veins and on my psyche was just too much and since the numbers never seemed to go above 12,000, subjecting myself to the weekly disappointment of yet another low platelet count couldn't be a positive thing for my health). i got the results today and my platelet count was 110,000! The last time that my count was that high, I was on the dexa rapid fire program last August.
Needless to say, I am ecstatic! But I also realize that this might be a temporary spike so I will keep you updated as to the future monthly blood test results. I just had to share this information, though, because I know how debilitating these low counts can be to a person. Also, I have discontinued the collodial silver for fear that it may destroy the good bacteria in my gut but I did take it twice daily for a month.
Hope this story gives someone else hope that there may be a natural/alternative method out there that can work for them. If anyone is interested, I will be glad to post the brands/dosages/suppliers, etc. of the Vitamin C, aloe vera, and collodial silver that I am using/have used.
I also tried to incorporate grapefruit seed extract into the regimen but was afraid to use it after I read that it could interfere with the armour thyroid that I take. I did use it nightly for about two weeks.
God Bless and thank you for sharing your stories on here!
I agree. I would not suggest to anyone that they take colloidal silver, for multiple reasons. First, it really is scientifically unproven. Second, if it is the colloidal silver working, and it is working by eradicating H. Pylori, antibiotics are a PROVEN way of eradicating H. Pylori. Third, silver can become toxic in larger doses or for extended periods.
Nonetheless, its effectiveness has not been scientifically DISPROVEN, as best I can tell. In fact, its use long precedes the advent of science. Silver in various forms has been used for over 2000 years as an antibiotic and antiseptic. 2000 years of anecdotal evidence does count for something! Some people on this website may be old enough to have had silver nitrate drops in their eyes after birth to prevent blindness caused by bacteria. More recently, there is much work being done on the antibacterial effects of silver nanoparticles, which have been shown to be effective against H. Pylori.
As I said, I would not recommend taking colloidal silver, but dona_w already has, and is no longer taking it. Maybe we can learn something from her experience.
For those of you wanting to know more about Liposomal Vitamin C, I have copied and pasted the following description further down in the message in hopes that it will help explain it. I started reading about the work of Linus Pauling many years ago and was intrigued by his research concerning Vitamin C.
I do not make my own Liposomal Vitatmin C as I doubt my ability to undertake such an endeavor. I buy the Empirical Lab Liposomal Vitamin C brand because it is non-GMO and because, after researching different brands, the reviews indicated that this particular type tasted better (it's a liquid). Hope this helps.
As far as the collodial silver dosing goes, I've also researched it for years and will use it during flu outbreaks. Neither my hematologist nor my general physician would treat me for H-pylori because I didn't show any symptoms of it. I tried discussing the link between H-pylori and ITP but it didn't change either of their minds.
I didn't really start out with the intent to try all four of these different approaches that I mentioned in my previous post, at one time, it just happened. Either way, I am interested in whether or not I am able to sustain the increased platelet counts. I will let you know what my next blood test indicates. It is scheduled for the last week in March.
Here's the information on the Liposomal Vitamin C:
Vitamin C is the most used supplement in the world. There is good reason for this as the science behind the many benefits of vitamin C is solid. Dr. Svent Gyorgi and Dr. Linus Pauling performed innumerable experiments proving that man, unlike most animals, is dependent upon vitamin C for a healthy existence. For decades we have relied upon various ascorbic formulas for our supplemental needs, but now a whole new vista opens up with Liposomal technology.
Increase Absorption Dramatically - Regular vitamin C is absorbed at approximately 19%, the balance remains in the gastrointestinal tract to attract water and loosen the bowels. Liposomalized vitamin C is absorbed much more efficiently than traditional delivery methods. A huge advance in both efficiency and effectiveness of supplemental nutrients!
What Are Nanotechnology Liposomes? Nanotechnology refers to creating micro particles of the active material one wishes to coat with liposomes - in this case vitamin C. This requires expensive equipment and considerable time to complete. These micro particles are then inserted into special fat soluble materials resembling micro bubbles just a few millionths of an inch in diameter which are capable of sliding through the gut lining without being digested. The "bubbles" are now in the blood stream and are offered to the cells of the body as needed. As with the gut wall, the cell wall loves liposomes because they are made up of similar material (phosphatydal choline, lecithin, phosphatydal serine, CLA, etc) and the enclosed vitamin C is delivered directly into the cell while the liposomes are used by the cell wall or for other functions within the cell. A huge advance in both efficiency and effectiveness of supplemental nutrients!
Compare The Facts:
1,000 mg vitamin C tablet or capsule
Absorption 19% = 190 mg into blood stream
You can get incredible amounts into the blood stream without the risk of diarrhea which will occur long before you can absorb even 1,500 mg into the blood stream from traditional tablets or capsules.
The ease of use, taking small amounts of a pleasant tasting liquid instead of several large capsules, is Each teaspoonful of liposomal vitamin C contains 1,000 mg of vitamin C.
I was unsuccessful in trying to convince either of my doctors (hematologist and GP) to test for H-pylori since I was displaying no symptoms. I tried to talk with them about it and even provided them with links to various research articles that indicated the possible correlation between ITP and h-pylori infection but they chose not to test me.
The information on liposomal Vitamin C came from the website "Let's Talk Health", a website that carries a consumer protection certificate from DoctorTrusted.org and sells nutritional products. The liposomal Vitamin C that I take is from another company. I just thought the "Let's Talk Health" website did a better job explaining what liposomal vitamin C is/does than any other definition/explanation that I could find. Since the website carried the "DoctorTrusted" certification, I believed that it would be useful information to pass on to others. (Website addresses for both are listed at the end of this message.)
I realize that my experience is anecdotal and may not be sustainable. Unfortunately, the standard medical protocols that my hematologist prescribed and I followed for months were not sustainable either as far as allowing my counts to stabilize above the critical number that she felt comfortable with - 30,000 and above. That is one of the reasons that I decided to pursue natural/alternative routes while backing off from the traditional methods of treatment. Personally, in my case, I found every one of the traditional treatments made me feel worse than just taking the "watchful waiting" approach even though my counts were consistently in the 4000-12,000 range when I was not being treated through traditional methods. It's a personal decision and not endorsed by either of my doctors. I believe that what I am doing is best for me. I was just so excited by the latest blood test result that I felt the need to share it with others since that is the process that led me to try these natural/alternative products - others sharing their results.
Here's to hoping that someday, ITP is a treatable disorder for all who are diagnosed!
There is a fascinating book titled Who Goes First - The Story of Self-Experimentation in Medicine written in 1987 by Lawrence K Altman, MD, Medical Correspondent for the New York Times. The book explores the many cases of researchers experimenting on themselves, at great personal risk and sacrifice, but also at great benefit to medical knowledge. There are serious ethical issues involved.
dona_w, it sounds like you have done your homework, and it sounds like perhaps you have succeeded where the experts had failed. I have seen in alternative medicine that colloidal silver and aloe have been used together to treat H pylori; is liposomal vitamin C also part of a protocol?
Unfortunately, one may never know whether H pylori was the cause and colloidal silver the cure. It is a great shame that you were not able to at least be tested for H pylori beforehand. In some states you can have a screening test for h pylori for $20 without lab orders from a doctor.
Liposomal Vitamin C and Aloe Vera
7 years 9 months ago #46921
Thanks dona_w - I like to be able to go to sites and read for myself (can you tell I'm from the Show-Me State )
I think you are doing an amazing job researching and looking out for yourself! I really don't understand why your doctors would not test you for h-pylori, no skin off their noses for heavens sake. Do you like them? Do you trust them?
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