TOPIC:

John wrote:

P.S. I have been passing some small kidney stones of late. Very painful. I've never experienced this before and there is no family history. I assume my heavy does of supplements the last few months has brought this on.

It is said that prednisone can cause kidney stones because of the leaching of calcium from bones which is then excreted in the urine. I have had three goes with pain from small stones in the past and always when on or soon after steroids.

hi Ann/Joan,

I did not know that kidney stones were a possible side effect of prednisone. No kidney stone is small enough considering the pain, but hopefully this will pass soon enough.

So are the metal supplements contributing to my problem? Or is it the detoxifying effect of this diet? I am not likely to ever know. I just look forward to ending my 8-month prednisone campaign soon.

cheers,

john

My platelet count continues to hold above 300k as my last result was 343k as tested on Oct.18th. I am now down to 5 mg per day prednisone every other day. I will continue with my diet for now.

Testing for endomysial antibodies Gliadin IgA and Gliadin IgG (ie. testing for gluten antibodies) was negative. So I do not have a celiac condition and I assume with this I am not gluten intolerant. We'll have to see how to reintroduce gluten back into my diet and I would only do this very slowly.

I also had my 6th Reiki session this past week. A big thumbs up on this therapy.

One big benefit of the diet has been the positive impact on my cholesterol levels. I just started taking Crestor earlier in the year as my cholesterol was >6 mmol/l and had been creeping higher for a long time. In fact testing this summer showed levels of 7.1. Now my levels are well within the normal range at ~4.0 mmol/l.

cheers,

john

I am off prednisone!!

I stopped taking it about a week ago. My platlet count as tested on Nov. 11th was 283k. My hemoglobin levels, now at 130 g/L, are finally coming into normal levels since my big bleed in early August. It took well over three months for my blood to recover.

I had my 7th bi-monthly Reiki session. I will go to a monthly schedule and keep with the Reiki therapy. I will also stick with the diet until I am sure that my platlets will remain stable. I am now starting the 7th month of this diet.

I had a chat with someone who is involved with the development of new standards and regulations for Canadian Homeopathy. She sits on the council of the College of Homeopaths of Ontario. She seems like a very good local resource for me in the future.

Her thoughts on the Reiki therapy are good, but she qualified that success lies entirely with the ability and skill of the therapist practicing Reiki. What I learned though is that there are many ways to work on the bodies energy system beyond Reiki. I will look closer at homeopathic approaches next year as I am quite certain I can find a cheaper approach for the long run.

To get off prednisone after 9 months is a fantastic milestone this year. My ITP symptoms were as bad if not worse than I experienced just prior to having my spleen removed in '94. I want my spleen back because I am pretty certain that the splenectomy could have been avoided with what I know now!

I'll add that I was not impressed with the new drug alternatives that I learned about at the PDSA Conference in July. Most of these drugs, if successful, appeared to help for only a few years, with no guarantees of longer term success. And some presented severe side effects and health risks. The big problem here in Canada is that many of these new drugs are not covered by government health care, and I would be taking these drugs at tremendous personal cost. A prescription of 200 5mg prednisone pills costs about $18. The new drugs available run tens of thousands of dollars.

I'll report if there is any change (ie. diet, platelet status), but I am hoping that it will be a while from now.

cheers,

john

John wrote:

....but she qualified that success lies entirely with the ability and skill of the therapist practicing Reiki. What I learned though is that there are many ways to work on the bodies energy system beyond Reiki. I will look closer at homeopathic approaches next year as I am quite certain I can find a cheaper approach for the long run.

Wanted to point out that this is true for any profession. Whether it be an MD, ND, OD, Homeopath, acupuncturist, etc. We worked with two homeopaths prior to our current one and they really didn't know what they were doing. I will give the second one credit in that she was right out of school and very green. She was closer then the first one was by miles, but still, skill and experience is essential when dealing with disease (especially especially when doing it naturally).

Congrats on getting off the prednisone. Definitely the h-pathy is cost efficient! It is how I treat my entire family for pretty much everything now as it is inexpensive and works so fast.

I met with a hematologist on Dec. 2nd. It was not inspiring. My platelet count was 276k on the day.

This doctor prescribed the IVIG I had back in April. I had not seen him since. He could not figure out how I had such a big bleed in early August and then return to normal platelet counts. It was a one-sided conversation and I was glad to leave. I will maintain the contact and respect that when/if I run into trouble, I need a hematologist as backup.

I met with my naturopath yesterday. The ES Scan result was very good.



N.B. Normal score is above 20 - 24, max is 30.

I continue on the diet. I have lost +10 lbs since I began and I am now at what I would consider a good weight. I have been able to reduce my betablocker from 10 to 5 mg. I hope to stop taking high blood pressure pills altogether (I started taking them in 2003).

I have come to the conclusion that I will have to remain gluten free for the long term. I have tried to reintroduce gluten in small quantities and I notice problems within my gut inside of 2 days. While the gluten antibody test showed that I do not have a celiac condition (genetically), there is an intolerance that I have to be mindful of.

I also had a Reiki session today and will have them on a monthly basis until I can figure out an alternative longer term.

It has been an interesting year for my ITP condition. The most challenging since I had my spleen removed in '94.

Have a Merry Christmas all!

cheers,

john

John,

Congrats on tackling this naturally! In so many ways it takes more patience and perserverence to treat oneself naturally. It takes lots of tweaking, adjusting and learning and many people give up way too soon. Well done!

patti

Do you have the option of "firing" that hematologist and getting a new one, one you trust & may respect? That's what I would do - why see a doctor one doesn't like or trust.

Nice platelet count.

I met with my hematologist mid. Feb and this past week. Since the last update I have been thoroughly checked out which I will explain further. My bloods are still stable with a platelet count of 276k and hemoglobin of 130 mid-Feb, and this week platelet levels a bit lower at 184k and hemoglobin of 140. I am glad to see the latter result is finally well within normal range (it took more than 6 months to climb from the 70 level).

My hematologist had ordered a CT scan (with dyes) and a lymph node biopsy (because it was enlarged). Everything checked out normal. I had the same lymph node biopsy in '93. I saw a cardiologist because I had heart palpations in August/September. An EKG and his examination revealed that everything was normal. We concluded the heart was stressed last year due to the big bleed and very low hemoglobin levels. I also saw a urologist due to the kidney stone episodes last fall. The CT scan showed no remaining stones which is a relief.

My hematologist felt there wasn't any follow up required with my platelet counts now stable for several months. He did think that Rituxan was a future option if ever I run into the same trouble as last year. He did confirm that Rituxan is not covered by Ontario Health care for ITP. It would be about $16,000 for a four dose injection administered weekly. I hope I don't ever have to go there.

I continue with my diet, although I have started to drink a coffee every couple of days and a 1/2 bottle of wine once a week. But I remain gluten free and sugar free as best as I can.

I go for my monthly Reiki session next week and I feel I need the recharge. I don't have time right now to pursue other homeopathic alternatives, but I am grateful that Reiki has helped improve my management of ITP.

cheers,

john

P.S. It will be a year ago next week when I was admitted to hospital for my first (and hopefully last) IVIG.

I read your first post about stress triggering your platelet count to decrease ... I believe I'm on the same boat . I've been stressed out , I'm a single mother of a soon to be two year old ... Stress factor #1 ... I lost my job stress factor two ... I'm behind on my bills #3 ... I lost my mother recently ... And I've always had an issue with depression and being diagnosed with ITP ... Being hospitalized and away from my daughter for two weeks surely took a toll on me . The side effect from
The prednisone cause stress and countless other things , dealing with this ITP thing is so stressful and discouraging . I think it would take a lot for me to escape the stress level of it all .

april,

You have to start somewhere.

Reiki was key to my healing and recovery last year. It also helped me to better manage any stress. If you cannot afford this type of treatment, I would strongly recommend yoga (and take classes to learn it properly). Yoga is a great stress reliever once you learn the breathing techniques and acquire a meditation routine as part of your sessions.

There is no quick fix and no fast way out if you want to consider natural methods. They all take time and patience.

Going with various lines of treatment for ITP that modern medicine offers takes you down a certain path (that many on this site are familiar with). If you want to change that outcome, YOU have to make it happen. No one is going to be able to do it for you.

cheers,

john

Hi John,
Your story is interesting to me. In my case, I started to use Probiotics, Spirula, and Astragulus a month ago. The platelet count when I start to use these is 66. After 3 weeks, my count is down to 9, but on the blood test result looks better than before. Everything is in the range, except platelet count, such as cholesterol level, triglycerine, glucose which were not before. Due to the count is low (9) I had to go to hospital. They tranfuse 1 unit of IVIG, and release me next day when the count was 26. I will have a blood test this friday. Now I am taking 60 mg prednisone everyday.
It is a fluctuation in the count. How do you think John?
Thank you.

hi thuathien,

You sound like you are in a situation much like I was last summer. I had started on this very strict diet and my overall health was improving significantly. Yet my platelets were still very low. Then I had my big bleed in early Aug. last year despite being on 25 mg. prednisone daily. There seemed no way out.

I did three things. I stayed away from the hospital (that meant no more ivig) and bumped up my prednisone to 50 mg per day. I continued on my diet as per the previous three months. And I tried Reiki immediately thereafter. My platelet counts soared and I never looked back. I tapered slowly off prednisone last Nov. I and I have been good since.

What I learned from this experience is that diet alone will not necessarily get you out of this jam. Diet works on the chemical plane and helps bring the body back into balance (ie. low cholesterol etc.), but it does not impact the energy plane. Reiki was able to bring my body's energy into equilibrium. I don't understand how it works. But this distinction must be clear and many have been referring to it in this Natural Treatment Methods section. Homeopathic methods can accomplish the same thing if you find the right remedy with a good practitioner.

Don't give up on the diet. Rather try homeopathy or Reiki as a next step. Stay on prednisone until you can safely taper off the drug. Above all, give it time. GL.

cheers,

john

Hi John,
Thanks for your replying. I got the blood test result this morning (8/20/12) with platelet count is 320K. I am very happy because it is never with this range since I had this desease in Oct 2010. However, I think I get this number because I had 1 unit of IVIG at the hospital on 8/7/12, and then 2 other infuses of WINRHO (8/9/12 and 8/16/12) at my hematologist's office. I am also taking 60mg prednisone daily. As you know, the IVIG increase platelet count temporarily (~ 2 weeks), winrho may keep it a month. I wonder that how to maintain this number when I tapper down prednisone. Through your experience, how slowly you dropped down prednisone (down 10 mg, 5mg or 2.5 mg per week). Your ITP treament is successful because you can maintain your very good count without taking any medicine.
Thank you.

hi thuathien,

You've had enough medication to bring up your platelets. It seems almost like overkill. That aside, I tapered off 5 mg per week. I would follow the advice of your doctor when tapering of prednisone.

Real success is having a platelet count like you have now without medication. It can be done, but you are going to have to try something very different (as I did in my experience) for that to happen.

GL.

cheers,

john

Hi John,
I stopped using Probiotics, Spirulina, Astragulus... since I was admitted in hospital due to the platelet count reducing from 66 to 9. I wonder that should I take them again or not. I have changed my diet more than a year with more fish, brown rice, vegetables, fruit. No to beef, candy, bread... I practice YOGA about 1 hour everyday except sundays.
My Hematologist wanted me to reduce Prednisone from 60mg to 40 mg because my PC is now is 320K. I think it is tappered down rather fast, so I just reduce to 50mg for a week, and then reduce to 40mg for another week...
I try to modify your suceessful plan into my case. Hopefully it works!
Thank you.

I hate I did not jump on here sooner.. I had ITP back in 2010 for about 3 months or so. I was one of those who couldn't get out of critical levels very easy. The Dr. I was seeing seem to get annoyed with me after asking questions more and more about how I could possible treat this with diet. I understand some just don't want to deal with you but by the textbook. I for one did not like the answer of taking any type of chemo or taking my spleen out.

With that said, some may disagree, but when I was in my church and people prayed for me, a church member who happened to be a chiropractor/nutritionist felt God wanted him to talk to me about my diet. I accepted that due to not having any other alternatives and I believe in Jesus Christ. Anyway, he researched ITP and came up with a solution of vitamins through Standard Process. So, all my vitamins are whole food vitamins, which seem to make a huge difference. I started those and also started the Standard Process purification diet that goes for 3 weeks. I followed that and 8 days into the diet, my platelets jumped into normal range.. which was great since prednisone only got me to 59k at my highest point. I can say I literally hate prednisone, but it helped me get through the purification diet. I'd eat cardboard at that point. Since that time in late 2010, I haven't had any more problems. Again, being a believer, I was informed by God through a prophet that I wasn't going to have any more problems with it. Take it for what it is worth, but I feel that my obedience doing this diet made a huge difference in my life.

One thing to note, is that my nutritionist wanted to stay away from fish oil. As fish oil thins your blood. I've seen my nutritionist help many people gain a healthy body back. Their website is yourpremierhealth.com. While he doesn't guarantee a cure.. he focuses on feeding the problem organs that may be struggling. I can admit I had the typical SAD diet.. Standard American Diet.. eating crap foods all the time, thinking I was invincible to disease. Even though I was a healthy looking male at the age of 30 at the time, my insides were taking a beating.

Again, this is my story and I have wanted to share it for so long, just typical excuse of being too busy with work to do so. I have full confidence that Dr. Bruce Wahler and Dr. Suzanne Wahler can offer you great nutrition advice. Dr. Bruce has history of working with hematology so that's a big plus when dealing with something like ITP. I hope that someone out there could benefit from this. Overall, for all those who have had this, I feel your pain. It's an aggravating autoimmune disease for people to get. Honestly, I believe diets like the purification diet set you on a path of getting over this. I have done the purification twice now.. did it not long ago, just for the health benefits of it. I admit, it's not easy to do.. but I now eat my fruits and veggies. I do still eat some take out and stuff.. but I still take my supplements along with Super Green Food I get from Earthfare.

I hope and pray for everyone on here to get over this horrible mess.

Good luck,

Jamie B.

Went for a physical 2 weeks ago and got my platelet count. 208K.

Things have been really good. To think where I was when I started this thread over 3 years ago. I think the biggest thing in all of this was to have been able to avoid the heavy drug therapies. It was not easy as I had many severe platelet crashes and should have been going to the hospital on each occasion for treatment (instead just stayed on Prednisone and tried to taper many times). If I had gone to a hematologist I knew what that was going to lead to (Rituxin). Instead I toughed it out with low counts and worked it out with natural methods. It can be done.

cheers,

john

John - I'm confused about your story. You said that you stayed on Prednisone instead of going to the hospital for treatment. Many people do that. I've done that; it's not unusual. If you were on Prednisone, you were treating ITP with medications. Where does the natural part come in?

I'm glad that you were able to avoid Rituxan and other harsher treatments, but I think I'm missing something.

Hi Sandi,

In 2011, there were times when my counts were below 10k, probably 5k for days. I simply treated with Prednisone until things stabilized. The massive bleed I had in August 2011 was unreal as I was actually on Prednisone at the time and I could not reverse the slide.

In past times, I have usually done what you say, but never with counts so low for so long. If I had gone to my hema he would have been pushing like crazy to treat very hard. And what was different about the entire 2011 experience was that I could not taper off prednisone. Was on it for 9 months in 2011. That's when I first thought it was the end of the line for this line of treatment.

That's what pushed me to try everything that I've tried. And only going that far did I find ways to avoid these drug treatments all together. Hope you are well.

cheers,

john

Ok. That clarifies things a bit.

Time for an update. Went for a medical this week. Just got the results online (new and I really like that). Platelets were 262K.

Its like it never happened, 2011 that is. Totally, and I mean totally normal these days. Getting very physical once again and that is the best.

I can't express my gratitude and humbleness. I realized in the last while that someone has been with me through all this. I've changed in big ways. I've learned so much.

My new BIG thing is KALE!! I grew this in my garden this summer for the first time and have enjoyed it for months. What a home run! This stuff is so easy to grow and the nutritional benefits are crazy.

My best wishes to everyone here on the forum.

cheers,
john