TOPIC:

Wow. Okay. That wasn't the welcoming response I was hoping for. Maybe I had this all wrong. Sorry, I was posting in the natural therapy section so was I wrong? I'm glad the drugs worked for you but why the nasty post? I wasn't knocking you or your recovery. What did I do to you? If you took my post as being derogatory or negative, then I'm sorry, that's not what I had intended. Geesh. I hope I don't run into you on a bad day.

Well, I guess my doctor who diagnosed me was a moron and my "high" count makes me hunky dory. I'll be on my way now because I can see I'm not welcome here.

Good bye/

Joe,

Couple of things. 1)Fungus/candida is the cause of sooooooo many illnesses. And yep, you're right, the majority of doctors are clueless and don't believe it. 2) There are a few naysayers that enjoy coming to the natural board to harass those who believe drugs to be a very bad approach to illness. Apparently, having at least 5 other places to post besides this board isn't enough for them. Ignore it. Your experience is valuable to those of us who do know the natural way works best and is the only real fix that does not produce unwanted side effects.

Melinda, I hate to tell you this, but you very likely have leaky gut from the prednisone and if you eat a processed diet at all, it's all but a guarantee. You may have gotten remission from the steroids, but at what cost? Since you can't see the internal damage they did to your body how can you say there is none? Eventually, what's in the well will come out. And steroids will be part of that damage. It may be in 5yrs, 10yrs, or in your old age. But no drug comes without it's consequences. And that is the risk that one chooses when they take that route. And for you, you decided the risk was worth it to you. But since you really don't care about anything natural, can you find your home on another thread? It's not fair to those that would like civil discourse about healthy alternatives.

Patti, thank you. I almost felt like Melinda was telling me that since my count was so wonderfully high that I wasn't welcome. Almost like a doctor telling a patient just diagnosed with Stage 1 cancer, "no big deal, it's just stage 1, my aunt has stage 4 cancer, so why don't you come back crying when you're really dying."

And again, my fault for not being clearer on the drug issue. I'm saying that for me, right now, I'm not considering drug remedies, although I may one day need them. I don't want to. I hope to never have to make that call. I've seen how my health has improved so greatly by taking a whole approach to health over the last 6 months and hoping to find ways to improve my count naturally.

And I am not one that is new to drugs. I was consistently on anti-biotics, prednisone and other steroids as a child for my asthma, always in and out of the hospital for attacks. I was put on ritalin in college for ADD and paxil for mood disorder. In my personal opinion, those drugs had way more negative side effects than the positive effects they had. Besides, in my personal opinion, it was my own free will that got me out of the years of suffering from depression and lack of concentration. I can say solidly, it wasn't the drugs. That is why I am a solid believer in a natural approach, and using Western medicine when absolutely necessary. There is a balance that must be achieved.

You are right Patti, because candida causes myriad types of symptoms, it is so difficult to diagnose, and I've routinely heard that over 75 million Americans have it and don't even know it. To me, it is fairly easy to believe since the standard American diet is filled with junk.

So with all of that said, what are some of the natural approaches that people have done to help with ITP?

Here you go.. here's the list that all those on this forum have found.

Vitamin C
Vitamin D
Homeopathy
Acupuncture
Meditation
Gluten free diet
Essential oils
Chinese herbs
Physical exercise
Helminthic therapy
Fasting
Bloodwell herbs
Euphorbia hirta
Cayenne pepper
Phycocyanin
Bergamot oil
Colostrum
Transfer factor
Hornbeam
Plantago major
Anamu
Revigor
Goji juice
Blood stim liquescence
Celery
Orange juice
Asparagus
Papaya leaf extract

Don't forget:
Vitamin K
Cell Salts Aka Tissue Salts

Melinda, I wouldn't worry too much about your gut 'leaking'. I can't find any reliable medical information (like, peer reviewed study, medical texts, etc.) that such a condition even exists. I do understand that this is the alternative medicine discussion and it is certainly an appropriate discussion to have here. I would be interested if there was any evidence of 'leaky gut' outside of the alternative medicine arena. My google-fu might be weak today.

Ann I love that you are keeping a list. Did you catch blueberries and celery?

JustJoe, I can't be sure but I think I helped my ITP when I figured out (with the help of gastro testing to rule out other things and confirm the diagnosis) that I had fructose malabsorption and changed my diet accordingly. I got relief from many many years of IBS, sometimes severe, and I've sustained my ITP remission for 3+ years after my last Rituxan. If you have gut problems that are aggravating your immune system, then clearing them up could help ITP. The ITP experts at the PDSA conference agreed too.
Erica

LEAKY GUT

This is an article written by a doctor (an MD), on Leaky Gut syndrome

www.stopleakygut.com/article

Here are some links to various scientific papers published in Leading Medical Journals discussing intestinal permeability and bacterial translocation issues, which are often loosely referred to as "leaky gut". It’s a very real condition, with very real consequences for health, and it is a condition too many allopathic health care providers don't seem to know about, or refuse to acknowledge.

Inflammatory bowel disease and the apical junctional complex.
www.ncbi.nlm.nih.gov/pubmed/17057204

Tight junctions, Leaky intestines and Pediatric diseases
www.ncbi.nlm.nih.gov/pubmed/16092447

Normalization of leaky gut in chronic fatigue syndrome (CFS) is accompanied by a clinical improvement: effects of age, duration of illness and the translocation of LPS from gram-negative bacteria.
www.ncbi.nlm.nih.gov/pubmed/19112401

Role of the intestinal barrier in inflammatory bowel disease.
www.ncbi.nlm.nih.gov/pubmed/18200662

Regulation of the intestinal epithelial barrier by the apical junctional complex.
www.ncbi.nlm.nih.gov/pubmed/16462161

Tight junctions and cell-cell interactions.
www.ncbi.nlm.nih.gov/pubmed/16799199

The importance of the gastrointestinal system in the pathogenesis of heart failure.
www.ncbi.nlm.nih.gov/pubmed/15980032

Gut inflammation in chronic fatigue syndrome.
www.ncbi.nlm.nih.gov/pubmed/20939923

Microbial-gut interactions in health and disease. Irritable bowel syndrome.
www.ncbi.nlm.nih.gov/pubmed/15123072


While I do believe it's a real condition, I also feel it's one of those catch-all phrases that seems to be highly overdiagnosed

Ah, funny, April. I find amongst my friends and aquaintances it is highly under-diagnosed because so few doctors do understand what it is.

Thanks april, interesting articles.
Erica

Even if Leaky Gut was a bogus claim and didn't exist (let me be clear I believe it is a real medical condition), what makes it so visceral is that why do people end up losing their symptoms associated with LG when they begin to focus and attend to their health and diet through real lifestyle change?

I am living proof that eating the right foods has put me in a position to say that 95% plus of the "medical conditions" (or symptoms) I had are now gone, simply by eating right, taking vitamins and probiotics and aggressively using yeast killers.

So maybe LG doesn't exist. But if my medical conditions (aka: symptoms) are negligible or gone completely simply by eating right, then why don't more doctors advocate eating properly to eliminate specific "symptoms". ...(drug companies)...

That's why I believe I can find a way naturally to improve my platelet count. I understand that the body is highly complex and uniquely individual and thus all treatments, or one-off approachs can fail with some and work with others. Thus claiming failure of natural treatments is a bogus argument (one could easily make the same case for drugs or traditional Western medical treatments too) because of the uniqueness of the individuals condition and specific set of circumstances are 100% different than the person next to them.

Here's a question for the people who believe that foods affect their platelet count. If there are platelet antibodies present in the blood, does the food encourage the production of antibodies and not eating the food means the antibody production will cease, or how might it work?

Hi Ann,
Not sure if you were in part referring to my supposition. For me I had severe irritable bowel symptoms for most of my life, and especially bad in the recent years. My intestines actually showed some evidence of scarring and healing in the colonoscopy I had after I changed my diet. A breath test showed that I had fructose malabsorption and the diet changes I made were to address that. The constant inflammation and irritation in my intestines I think may have contributed to my overactive immune system (I have lupus) - my ITP is secondary to my lupus. This is my layman's way of thinking about it - my immune system is sensitive and overreacts. The gut problems stimulated that overreaction. Changing my diet reduced the inflammation dramatically ( my symptoms are usually gone and only flare up now and then when I eat wrong). Thus my immune system is not reacting to that insult. More accurately, I'm producing fewer platelet antibodies I think.

The diet changes I had to make do NOT correspond to what one would usually think of as healthy diet! I had to eliminate most fruits, many vegetables, and a lot of fiber sources. I always have eaten pretty healthy, mostly vegetarian, lots of rice and grains and veg, and I had to back off that somewhat. I feel a whole lot better.

I think it's possible that when people make a variety of changes to their diet and lifestyle, the positive results they experience may be due to a particular change and not all the things they are doing. If you had what I have and quit eating apples and pears you would feel a whole lot better. Probiotics would make my condition worse.

I can't know for sure but it sure isn't worth going back to eating apples and onions and risking a drop in platelets and feeling sick like I used to. I do miss onions though.
Erica

Hi Patti,

You said:

Ah, funny, April. I find amongst my friends and aquaintances it is highly under-diagnosed because so few doctors do understand what it is.

(and I think you meant to say they "do NOT understand it, right?")

It's probably a difference of where we live.Remember, I'm living in Southern California. I remember when I moved here, someone told me this joke:
Q: "How is California like a box of cereal?"
A: "They're both full of flakes, fruits and nuts!"
(Not that there's anything wrong with that, of course, to each his own. But, I'd say there's more than a touch of truth to that joke, as, like Dorothy said, "I don't think we're in Kansas anymore!", which is where I moved from.)


I'm just saying that over the years in my practice as a homeopath, I have had countless number of patients come to me, telling me they have leaky gut (along with they are all riddled with candida, they're gluten intolerant, have parasites, they all have toxic livers and colons). And, many of them have these impressive looking computer printouts and lab tests to show it. But, I have a good number of patients who are coming from the same core group of Naturopaths, and every single one of them has the same 'diagnosis', they're all put on the same regimen, yet each of these persons are very, very different, with a wide variety of complaints. It seems to me it is little different from the allopathic doctor whose answer to 'what ails you' is either antibiotics, Prednisone or Prozac.

Now, I do think all of these things do exist, I think they can contribute to a person's overall health (or lack of), but, from my experience, I don't think these things are generally where the trouble lies, they are not the CAUSE of their disease, they are the SYMPTOMS of their disease, which are two very different things.

I've just seen too many who were diagnosed by various Naturopaths, "Energy" workers, Chiropractors, sometimes even holistic MDs, and for 2 or 3 years (not to mention, $$$ later), they've been eating totally organic, gluten free, casein free, not a speck of sugar crosses their lips-they have very pristine diets. They've done the various detox cleanses, continue to use expensive supplements and probiotics galore. Often times their kids have been put on these same diets. Most of these kids have been on very controlled diets for most of their lives.
(In my twin's classroom, there are so many kids on special diets or who are said to have food sensitivities, that for birthday treats we have to come up with something that contains no gluten, no sugar, no honey, no dairy, no nuts, no mango, strawberries, kiwi or bananas-and the list seems to grow longer each year--Agghh! Organic carrot sticks anyone!? )

The thing is, usually these patients DO feel better than they would if they were eating the standard American diet, but they're still looking for help, because despite all of these efforts, they're still having problems, still not feeling well. They're tired of having to go to such extremes with controlling their diet. And, if leaky gut was really the problem, how can it be that when they get the correct homeopathic remedy, their symptoms often go away within minutes, hours, or a few days? I see that all the time.

It's because we experience disease when there's a disturbance in the energetic plane of the body, and it requires an energetic medicine to correct it, not a chemical one. Homeopathic remedies are an energetic medicine , as is acupuncture, cranial-sacral, Qigong and probably a few others that I'm not thinking of right now.

An energetic disturbance requires an energetic medicine to cure, Like Cures Likes, it's as simple as that.

Chemically-based drugs, herbs, supplements and food all primarily act on the chemical plane of the body, though even each of them also carry an energetic imprint (as we can see and feel the difference when we eat raw, unprocessed, organically grown vegetables, compared to a heat-sterilized, pesticide grown, can of vegetables, which has virtually no vitality left in it.)

So, my take is that I would suggest continuing a special diet if you notice that you feel better on it. Good nutrition is never wasted, and seems a bit obvious. But, I would not expect diet alone to cure you.

April

April if I lived near you I'd come see you as a patient. I like your attitude and I like that you see two sides to things.

I'm serious Sandi - I would! It's been said by a certain someone here that I don't do or like or whatever [not worth it to me to go back and see exact words] natural. That certain someone makes assumptions, she doesn't know what I've tried but she has judged me and given her verdict.

Oh and if urine is considered a food/natural Ann needs to add that to the list - a person at the old discussion group said drinking his/her own urine & he/she [can't remember gender] was cured!

Yup. I meant "not." Thanks, April. LOL! Okay, love the CA joke. Seriously, though, what you said makes total sense. AND, I can see from working with our ND exactly what you are talking about in terms of diagnosis. I was thinking medical doctors. AND, you are 100% correct regarding diet. After $15,000 and 3yrs with Luke and zero healing until ITP, I totally agree that diet alone (essentially naturopathy) will never heal someone. I must agree with that 100%. I'll just say God has been given our thanks many times over for a very sweet, unbelievably talented beyond belief homeopath.

Melinda (I almost called you Mindy), I knew you were serious. I was smiling at the way the discussion took a turn.

Well time for an update. The last few weeks have not been good.

I had the biggest bleed of my life about 3 weeks ago while at our Quebec cottage. I won't bother with the details. But I have never lost so much blood due to ITP. I was very lucky to avoid hospitalization, never mind driving back to Toronto. Fortunately I still have response to Prednisone and bumping to 50 mg eased me out of the problem. But because I lost so much blood (internally), it has had other consequences. I've never experienced this before and it has given me a stark reminder that riding the edge of low platelets comes with risk.

I decided to undo some of the recent supplement changes and cut back on the probiotics. I also met with my naturopath and she agreed. My homeostasis dropped a bit, where my autonomic nervous system (ANS) dropped right back down. This I am sure is a consequence of the big bleed and the physical stress of it.



I continue with the diet, but I know now that this alone will not get me off prednisone and back to where I was before all this started. There is no doubt that my overall health has greatly improved. I see several signs that I had a major yeast (Candida) overgrowth problem and I am in a major yeast killoff at the moment. But this is not getting at the core of the problem.

I think the comments over the last several weeks that discuss this issue are spot on.

An energetic disturbance requires an energetic medicine to cure, Like Cures Likes, it's as simple as that.

I have decided to try Reiki and had my first session last weekend. I plan on pursuing this as well as regular yoga in the coming months. I have found that practicing the breathing techniques to be very beneficial.

I'll catch up with you in September.

cheers,

john

Wow, that sound really scary. What were your counts? Does anything else work for you besides Prednisone? It's an awful drug. Hope that your recovering well,

Lily

hi Lily,

Back to say hello and provide an update today. But to answer your questions first:

What were your counts?

I didn't get a count done during my crisis at the cottage. But based on symptoms, I'd have to say counts would have been under 5k for sure, probably even under 3k. Not good. I had significant swelling in my throat, mouth, and tongue. My mouth was full of what I call "blood blisters". It took almost a full week for things to stabilize with higher doses of prednisone (50 mg per day).

Does anything else work for you besides Prednisone?

I am fortunate that prednsione still works for me. I have had my first IVIG in April (and hopefully my last) which did yield a short term boost in my counts. But I didn't see the exercise as all that beneficial. It took 4 days in the hospital and the boost was only very short term. In the end I had to boost my prednisone levels to keep counts in a normal range.

My goal is to get off prednisone soon. I have been taking it since March, and without significant progress with these naturopathic methods I am trying, I will have to take a look at the new drugs available (most of which are not approved for ITP indication in Canada so I have learned).

cheers,

john

I saw my family doctor in early September. A big shocker. My platelet count was 650k when tested on Aug. 23rd. We went away on vacation to Iceland the day after. (BTW, what an raw, rugged place with surreal landscapes).

But my hemoglobin levels are very low at 92 g/L. The normal range is say 140-180 and the reason mine is so low is due to the big bleed I had in August. I'm told it will take a few more weeks to rebuild my blood back to normal levels. What has been the effect of low hemoglobin levels? A walk to the mailbox was a big deal in the first few weeks. Hemoglobin is the protein in red blood cells that carries oxygen from your lungs to your bodies tissues. So I have struggled with any type of exertion due to a lack of oxygen getting to muscles etc.

I then had a CBC done on our return in early September. That result was 400k (Sept. 9). I have been tapering off the prednisone dose from 50 mg in August and currently at 25 mg again.

I saw my naturopath on Sept. 8th. The ES Scan shows stability, but the Autonomic Nervous System (ANS) ranked very poorly again. I think this will improve once my hemoglobin levels get back into a normal range.

I had my second Reiki session last week and this is proving very interesting. It is a very bizarre technique, but I am willing to give it a serious evaluation to see what the benefits might be. If my platelets continue to stay this elevated, I would have to say that the Reiki is having a significant impact. But it is still too early to tell.

I spoke with Joan Young (and read her book) at the PDSA Conference on a couple of occasions. She did rely on the Reiki method to improve her condition and this is where I got the idea to try it.

cheers,

john

I should add a comment about this diet I am on - since that is the original theme of this thread.

Recall that it is a no gluten, no sugar, no caffeine, no alcohol diet.

I have never had a diagnosed allergy to any food, nor a food intolerance that I was aware of. But the ITP flare up this year, the worst since I had my spleen removed in '94, has pushed me to aggressively seek natural alternatives to prednisone or any other drug I may need to consider down the road.

The main goal of the diet is to eliminate "Candida Albicans". Here is a useful site to learn more.

www.theyeastdiet.com/

If you are wondering what symptoms might be relevant, take this test:

www.theyeastdiet.com/candida-test.html

In my case the main symptoms this year were:

Digestive bloating (inflammation of the gut which I did not realize I had),

Fatigue,

Cravings for sugar, breads and carbs (which was causing the start of a weight problem),

A white coating on my tongue which I could not get rid of no matter what I tried,

Joint pain and muscle pain which actually was quite severe earlier this year.

So could all this be due to a severe yeast infection/overgrowth?


Well I will be 4 months into this diet next week. I can report the following:

Most of the above symptoms are gone. The early ES scans were showing colon and small intestine inflammation which is now completely cleared. I also feel the difference in my gut. It is remarkable.

I don't have the cravings and the big benefit is that my weight is well under control now (how could it not be given this diet). I have have actually lost weight despite being on prednisone since March. The joint pain was a real concern earlier this year and that is gone as well. I thought it was the early stages of arthritis.

So I continue with the diet. I miss my red wine big time. But I am very motivated. I'll tell you why.

In April when I was being administered my IVIG for the first time, I shared a room on the cancer ward with two other guys. One had very late stage diabetes and the other had throat cancer (looked like stage 4). In the name of good health, I swore that when I left I would do everything, and I mean everything to avoid being back at that hospital for an IVIG. So far I've managed to do that this summer, but barely.

So onward and forward we go.

cheers,

john

Good news today. I won't high five until I am off prednisone, but things are looking up. I have tapered off to 15 mg prednisone this week. I will continue to reduce by 5 mg per week.

I saw my family doctor for test results of a full medical last week. My platelet count was 336k when tested on Sept. 23rd. So I have been stable with a count > 300k for well over a month, post my bleed episode of early August.

But my hemoglobin levels are still very low at 100 g/L (normal range is say 140-180) as is my blood iron. Apparently it will take quite some time to rebuild my blood back to normal levels.

I am still getting more insight to how bad that bleed was in August. I have blood in my urine (and thus my kidneys) discovered during my medical. This is a carry over from the internal bleeding I suffered last month (I knew it was bad, but woah).

I feel the Reiki is having a very positive impact. I will have my 4th session next week. The diet continues and hopefully within a few weeks I can report more success.

cheers,

john

So if your count stays up is it due to the steroids, the diet or the Reiki? How will you know?

So if your count stays up is it due to the steroids, the diet or the Reiki? How will you know?

Ann,

I don't know what your personal experience has been with prednisone, but I have 20+ years with it and always on an interval type basis. The reason I was forced to start a course of prednisone back in March was because my platelets crashed (counts <10k). It has always been my first line of treatment since I had my spleen removed. And normally a course of ~3 weeks would get me back on the straight and narrow and I would be done with my ITP symptoms. But this year has been different. My platelets crashed on three other occasions since while trying to taper off the drug. The only thing that has kept me out of the hospital each time is bumping my prednisone dose back up to the 40 - 50 mg level. So we can say that I have always had and still have a good response with prednisone.

This is the first time this year that my counts are staying high while tapering to low dose levels, and I am now down to only 15 mg. This is a first and I am excited. If I can get off prednisone in the coming weeks, then my conclusion would be very clear. If the combination of this diet and Reiki has gotten me out of this situation, I will be a very happy man.

So what happened in August? I was taking a dose of 25 mg prednsione when my big bleed occurred. That dose level should have kept me stable at the time. I don't really know why I had such an event, but had I not had prednisone with me at the cottage, I probably would have been in really big trouble. Taking 50 mg per day over about a two week period brought my counts back up to that 600k level.

The difference now is that I should be able to taper off the drug and keep my platelet count in a normal range. And that has been the stated goal from the start of this thread.

cheers,

john

Wow John, some pretty good numbers there, I have been watching your story for a while. Good for you, I will high five you now.

I am down to 10 mg per day prednisone. I have not seen any overt signs of my platelet count dropping. I'll get another CBC result this coming week. I also had my 4th Reiki session last week.

Wikipedia provides a fairly decent overview of the Japanese energy therapy. My therapist is a Master/Teacher practising primarily the Usui Reiki Shiki Ryōhō method.

en.wikipedia.org/wiki/Reiki

I found this extremely good article in a past PDSA newsletter. I think this article by Edward Conley (see link below) embodies everything I have been trying to do from a physical health approach (ie. diet change).

www.pdsa.org/assets/pdf/PDSA-Spring06.pdf

cheers,

john

My platelet count continues to hold above 300k as my last result was 355k as tested on Oct.7th. I am down to 5 mg per day prednisone as of today. Things are definitely looking up.

I spoke with my family doctor today and discussed the PDSA article (see previous post) with him. We agreed to pursue some of the testing suggested in the article and I will first have tests for endomysial antibodies Gliadin IgA and Gliadin IgG (ie. testing for gluten antibodies). With this result I will know whether I am on a gluten free diet for the long term or not.

www.celiac.com/articles/20/1/Should-I-just-test-endomysial-antibodies-or-also-do-gliadinreticulin/Page1.html

I also had my 5th Reiki session this past week. I think this healing therapy has had a huge impact on my health. I am starting to feel like my old self again.

cheers,

john

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.

John,

About 10 months after I changed to a much healthier diet I also had some very small kidney stones. They passed and none since in the last 20 years. Perhaps it is part of the cleansing process. Aduki beans can help.