I'm new to ITP (in the latter stages of getting a confirmed diagnosis) and trying to learn as much as I can. I recently came across mention of this book on the ITP support facebook group - have any of you read this book and can give a review as to the helpfulness of it?
It's not cheap, and the author isn't medically trained but states he is a naturopath whose mother and brother suffered from ITP. He claims he has studied this for 20 years and by following his advice we can manage ITP without steroids or damaging treatments (which I would obviously love to believe).
I've downloaded the first 18 pages which you can get free but it hasn't really got to the juicy stuff yet. The contents page is pretty interesting though, with chapters that seem to focus on the diet quite a bit. The author stresses this has a very big effect on ITP.
I had a major relapse last year. After two months on prednisone, I realized that my ITP condition was going to be more challenging than I had seen in the previous 20+ years. I did a lot of research on the web and found great resources like this PDSA site. I came across Cruz's book offer and read the ebooklet. I never bought it. Instead I bought and read Joan Young's "Wish by Spirit". Joan is the founder of this PDSA site.
I was impressed by her story and how she emerged from a very deep ITP hole. It showed me that it can be done and that you do not necessarily need drugs to accomplish this. So I went on a diet of my own, with the help of a naturopath, which ended up being more of a detox than anything else. But it was very important to do. I also found that Reiki, which Joan had done, could have a great impact.
The diet in my opinion serves two purposes. First it detoxes you. The goal is to remove as many heavy metals and toxins from your body as possible. You should also be very aware of any products in your environment that cause an issue. In my case I was very careful with any chlorine containing cleaners or products as I know this chemical is a very strong oxidant and is a definite ITP trigger for me. Exposure to high levels of chlorine in swim pools or hot tubs is a definite no-no.
The second and very important purpose of a diet is to figure out and eliminate any foods that you are allergic to or cannot tolerate. I have never had an obvious food allergy yet I discovered that I had low tolerance for gluten. Gluten it turns out was giving me major gastric problems and inflammation of my gut. Because it had developed over many years, I just got used to the condition. But once I went gluten free with the diet, there was an enormous change for the good.
BTW, The best article and the essence of what I did in 2011 is described in this great PDSA article published back in '06 titled Possible Underlying Factors of ITP. I cannot stress enough how important it is to understand what this article is trying to convey.
I cannot upload this newsletter and post it. You can find it here under the 2006 issue:
Spring, 2006 - 24-pages. “Possible Underlying Factors of ITP”, “Clinical Trials”, “Are Platelets Released in Your Lungs?”, “Essay: Help Prevent ITP”, “Environmental Triggers of ITP (Letters)”, “Indoor Pollution”, “Treating Refractory Chronic ITP in Children with Rituximab”, “A Different View - Unusual Success Stories From our Mailbox” and more. $5.00
Here's a preview:
Possible Underlying Factors of ITP
By Edward Conley, DO
No one knows the exact cause of
ITP. In my work with over 5000 patients
with autoimmune disease I have come
to believe that the underlying causes are
a combination of genetic and environmental
factors. Why some people
develop lupus when exposed to the same
environmental factors that may trigger
someone else to develop ITP would seem
to point to underlying genetic predisposition.
What I do is focus on the
possible environmental causes or underlying
triggers of autoimmunity and, if
possible, improve or correct those
underlying factors to see if the immune system will calm down. This may
reduce (or occasionally) eliminate the
need for powerful medications that may
cause unwanted side effects.
I focus on the factors that increase
(up-regulate) the immune system. There
are several environmental triggers that
we know cause an immune challenge
and may upregulate immunity on a
chronic basis. Unfortunately these factors
are often over-looked or not adequately
evaluated in all people with ITP. These
factors include, but are not limited to,
chronic allergies and chronic infection.
P.S. I hope this post does not get altered for the above reference..
Here Conley talks about food allergies and intolerances. However he also addresses a seldom discussed issue which is yeast overgrowth. I had a major problem for years and I did not know that it was caused by yeast overgrowth. However, you can eliminate yeast (aka Candida Albicans) through diet and it is very difficult to keep under control. The best way to keep yeast at bay is to maintain a low sugar diet, which I still do today.
There are so many food products offered today that are loaded with sugar. I read the labels and try to avoid all sweets, sugar loaded juices etc.
It is not easy being gluten-free while also maintaining a low sugar diet. But I am fortunate that I no longer have to take these heavy medications which have very bad side effects. I was on prednisone for 9 months last year. I think the worst of it is that it changes your character and makes you so irritable. Fortunately I have a very understanding and loving wife who has always supported me.
Thank you for all this great info John! What you've posted makes so much sense.
I'm so worried about taking steroids as I've read so many horror stories on here. I am self-employed and live alone so only one income and I'm pretty sure I'll have less work if I'm irritable/brain foggy/lethargic etc on top of all the other health problems they bring so I'm willing to try changing my eating habits if that will help.
Your other thread is very informative and interesting. I'm definitely going for the gluten and diary free diet for now, but I may move onto the Paleo diet which I've started reading about (Sandi has recently started a paleo thread). Seems to have a lot of science that backs it and great success stories of people reversing or at least minimising their illnesses.
Your yeast overgrowth has struck a chord with me. I quite often suffer with a yeast infection, I wonder if that has something to do with my diet/sugar too. I'll cut out my sugar content and see if there is an improvement. Thank you for bringing this up, would never have thought of this myself.
And I'm glad you have a loving wife to support you on this journey, hopefully I'll find someone right for me soon. I'm a lovely person!
I don't do the weird diets or any other thing but I have to say that when I was on steroids, I didn't behave in any extraordinary ways at work. It isn't mandatory that you react in a weird way with other people. I certainly didn't. So please don't think it's inevitable.
I am convinced that my ITP was caused my yeast overgrowth in combination with weakened immune system from stress and poor diet (high sugar/carb). Its been 8 months since I started probiotics, low sugar/carb diet and vitamin c (6,000mg per day). I recovered in 2 weeks and still have high numbers. I will never go back to that old lifestyle! I encourage everyone to try this approach because it is simple and effective (in my case). It may not be helpful for every case, but I believe it can help some.
If anyone else reads this and suspects chlorine as a "trigger" mechanism that has anything to do with their ITP please respond and explain why you came to that conclusion. I work with chlorine everyday and I have reoccurring episodes of chronic low platelets with all of the usual symptoms for 10 years now.
I had purchased the book and had some success with it.
The best thing that i liked about the book was the structured approach that it had to the causes and the structured approach it had to remedying the situation. For the first time, i thought that i was beginning to understand the disease .
I did get some success with testing myself for H.Pylori and eradicating it. Subsequently, my platelet counts went up from the mid-30's to the high 50's.
I tried some other solutions in the book, however, did not get the kind of success that i was looking for. I've yet to try all the solutions that the book recommends. Every patient is different and what's going to work for one, might not work for the other. So i'd recommend purchasing the book and trying out it's different solutions.
I received an email early this week from a poster here. Thought I'd share my response with the forum. I'm extremely well these days and much of that is thanks to april on this board. I suffered a really bad winter and had two bad setbacks, but now I am as good as ever. I'll update with some platelet counts etc. this fall after my annual physical. I haven't bothered with any blood work since Feb. because things are going so well.
I've been away the last two weeks. Just read your email tonight.
IMO, I believe it takes several allergens to get you to the point of ITP blowout symptoms (petechiae, bruising, blood blisters in mouth etc.). I've been in that situation many times and fortunately I have managed to turn things around with prednisone as first line treatment followed by alternative treatments (ie. Diet, Reiki, and Homeopathy). Two years ago I learned that I had a gluten intolerance and I only discovered this by trying a strict diet. This gluten intolerance caused all kinds of inflammation in my gut. There was no outward sign of a problem. This is just one example of an allergen or something that causes inflammation (which is bad for us ITPers).
I've had ITP for well over 20 years. I learned of my chlorine sensitivity strictly through cause and effect. It took me some time to associate some of my ITP episodes with heavy public pool use (and associated high levels of chlorine).
Prolonged stress can also be a major factor. Our international moves created a lot of change and I found organizing the moves very stressful. Stress can present itself in many ways. Simply a lack of proper sleep over long durations is equally problematic.
So then let's say you combine all the above. Throw in some other allergen that you may be unaware of, but is causing you a problem, and suddenly you have several factors working against you. This is what I believe really brings on a full ITP blowout (my term for extreme symptoms). And once your body is in this state, it takes a hell of a lot to calm down your immune system. By the time the hematologist sees you like that, extreme measures like ivig, Rituxan and other heavy drugs are the only viable options.
If you read through some of my PDSA forum posts, I have been hell bent to get away from prednisone and any other second or third line treatments. I've done the diets, detoxed, tried Reiki and this year I started homeopathy. The diets and Reiki got me so far. I would recommend you try homeopathy and go gluten free for starters. I have been working with April Bowen who posts as "april" on the PDSA site. She has been a great help to me this year.
In my experience, doctors and hematologists are not much help to you in the long run. They will keep you alive during ITP blowouts, but the real answer is to sort out your immune system and figure out what it is reacting to (and avoid these things). Homeopathy will help you restore your body back to the way it was before everything went beserk. I still don't fully understand how homeopathy really works. But I know it works and this comes from a one-time skeptic with a science background.
Good luck and feel free to contact me if you have any more thoughts.
My son has low platlets this is very hard to deal with I want to get the book but want to make sure there just not wanting my money.is this book good? My son is 4 I found out he had low platlets when he was 4 months old.he is in and out of the hospital.the lowest his platlets have been was 10 he had to get a platlets transfusion that was very hard.its hard to explain this desease to him right now he has a helmet made for him for when he goes to daycare, the park, riding his bike.I just want to hear good reviews on the book maybe it can help my son
Ebook "Conquer Low Platelets" by Louis Cruz
8 years 7 months ago #40900
If I had a young son with ITP like you do I would go down to the section titled "Parents of Children with ITP" and talk there - they have children with ITP and know more about young ones with ITP than us adults with ITP do.
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