TOPIC:

Thomas, do you have a link to the study you mention? If not a link, the title to the study.

I read this under duress so anything you glean from it would be fantastic! www.researchgate.net/publication/49771101_Idiopathic_thrombocytopenia_and_Helicobacter_pylori_infection_Platelet_count_increase_and_early_eradication_therapy

My counts have been around 25-30 for the past year and a half. No steroids, although occasional bruising and mouth blood blisters. I have been taking the Garden of Life Men 50 & Wiser probiotic for the past month and a half with no effect. Taking three a day gives 85 billion cultures. As these are supposed to cure "leaky gut", does anyone know where is a good test for "leaky gut"? There are some shown on the internet, but I'm unsure which to chose.
Also, anyone have any issues with Hepatitis B or C causing low platelets?
I have had the H.Pylori breath test and it came back negative.
How about metal toxicity issues and a test for that?

Thanks in advance for comments.

My understanding is that probiotics alone will not cure leaky gut. Diet also plays a big part. I just watched What The Health on Netflix and it talks about it in the documentary. I don't know about tests for leaky gut but I'd bet that most people have it.

Hep B and C could definitely cause low platelets. Metal toxicity could also cause ITP in which case you'd need a detox. I'd bet most people have that too due to mercury fillings, vaccines and other toxins.

Sandi - Thanks for this response. I, too, watched the "What the Health" on Netflix and, in fact, went on the plant based diet which have now been on for three months. Cholesterol went down from 220 to 150 with corresponding drop in LDL. Unfortunately, my HDL took a drop as well - and - no impact on platelet count.

I just started the plant based diet on Monday. I've snuck in some dairy though, not quite ready to cut it all out. I'll get there.

Good news on the cholesterol! Maybe you can research what will raise the HDL. Just proves that you don't need statins. Why don't doctors teach nutrition instead of taking out the prescription pad?

Our integrative medicine doctor ordered stool test and general food panel igg test. The result says my son is very sensitive to all diary products and eggs and gluten. She also said the stool test shows he has less probiotics than normal, and has "leaky gut". If you are interest, this is the test she ordered:
www.gdx.net/product/gi-effects-comprehensive-stool-test
www.usbiotek.com/Content/Services/Antibody-assessment-IgA%20and%20IgG.html

Hi,
I have heard from a functional medicine doctor that L-glutamine is a good supplement in addition to probiotics and an elimination diet to avoid all foods that may be causing increased immune system stress.
Cindy

I have L-Glutamine on my list of supplements to order. I've read the same thing.

Thanks very much for this feedback. I will review these tests and try to locate a practitioner in our area.

Our integrative medicine doctor was previously the head of pediatrics department in a reliable hospital in our area. Our pediatrician recommended her when I asked, he said he usually does not believe alternative medicine, but if I want to try, this is the person he trusts because she was his former colleague.
I asked our hematologist about the results, they said these are normal reliable tests, and a hospital gi or immunology department can also order it. They also said this is not related to the blood disorder, but our integrative doctor believes they are related. We are doing elimination diet, and probiotics and will see how it goes after several months.

I reviewed the Genova Diagnostics website and they referred me to a doctor in our area that I have contacted with my situation. I will do a bit of vetting and due diligence and see if they are a good fit. I have been on a near plant-based diet for three months (an occasional chicken or fish - no red meat and minimal sweets) but no change in the platelet count.

Sending you good thoughts for increased platelet count! I am taking skate oil my homeopathic said will help increase platelets, fyi. I hear carott juice and pomegrantin juice are good.
Do you think coffee decreases platelets? I am basically not drinking it but need to investigate.

Hello
I was diagnosed 1.5yrs ago. Struggling for the past few months with very low platelets (10-35) as we were trying to wean my prednisone down to 5mg/every other day. Made it to 10mg every other day, but that's when platelets went south, hard. Back up to 15mg/day, platelets at 35 and a splenectomy is on the horizon

Interested in trying some probiotics, but I've stayed away from them because of warnings on the bottle stating that it's contraindicated with prednisone.

Thoughts ?

Hi Tess,
Before you get a splenectomy, yes try Probiotics!
I do take them, a 90 billion count capsule a day. I did take them while I was on Prednisone.
Just have to suggest that if you were out of the country right before you were diagnosed that you get rid of any parasites, virus or bacteria that you might have picked up. I got diagnosed with ITP right after a trip to Costa Rica and after 5 months of ITP rollercoaster got treated for possible parasites, etc and am now cautiously optimistic that my platelets will stay stable. I am now at 262,000 on Promacta 25mg 3xa week.
If this out of the country part doesn't pertain to you, please disregard it but in case it did I wanted to share.
Best,
Cindy

Thanks, Cindy

I haven't been out of country, so parasites shouldn't be an issue.

I was hoping that you might have more info with regards to the safety of using probiotics while on long term steroid use other than your own personal experience.

But thank you for your response,
Tess

Alrighty. Have the go ahead from my Doc to try high dose probiotics in a last ditch effort to avoid a splenectomy.
I'm no longer responding well to prednisone as my platelets are spiralling down even with a higher dose. He's put in the referral to the group of surgeons for a splenectomy, so fingers crossed. I'll begin the probiotics today ....

Tess wrote:

Alrighty. Have the go ahead from my Doc to try high dose probiotics in a last ditch effort to avoid a splenectomy.
I'm no longer responding well to prednisone as my platelets are spiralling down even with a higher dose. He's put in the referral to the group of surgeons for a splenectomy, so fingers crossed. I'll begin the probiotics today ....

Hi Tess,
I certainly hope that probiotics do something good for you. I gave those a go and didn't see any effect in my counts.

Regarding your splenectomy, if I'm reading what you have said correctly, you have only tried steroids (prednisone)? Are you not interested in trying any of the current ITP treatments like Promacta or NPlate? Or rituxan? Or any of the other options? You may have researched those and decided that you didn't want to pursue any of them, I haven't been reading all of the posts closely.

Most people here do not go back to normal just after trying steroids (most of us have counts increase while on the medication (for people who actually get an increase from steroids, that is!), then decrease as we get off of the medication). I was given a splenectomy as a child (there were not so many treatment options back in the 1980s), and it didn't work for me and I'm still working my way through ITP treatments as an adult. Just something to keep in mind before you go removing healthy organs! If you have done all your research and don't want to try other treatments, more power to you, but just wanted to put that out there as you consider your options. If you are one who has a hematologist who has only tried prednisone and is acting like the immediate next choice is splenectomy (there are lots of these old-school types floating around out there), then you might want to try for a second opinion.

Best of luck!

Thanks for your input, momto3boys. Unfortunately, I live in Saskatoon, Saskatchewan, Canada ..... unless I pay completely out of pocket, with no reimbursement.
Up here, I won't have access to the treatments you suggest until the 'fourth line' of therapy. After splenectomy fails. it is,
First line ... steroids
Second line ... splenectomy
Third line ... steroids again
Fourth line ... 'experimental' drugs

Oi.

There is just something SO wrong about that. ^^^^^

Yup

Well for what it's worth (not much, totally untested), I'd ask my doc to give me Tamiflu (while taking steroids) in an attempt to regain a good steroid response.

Necessity is the mother of invention.

Tess wrote:

Thanks for your input, momto3boys. Unfortunately, I live in Saskatoon, Saskatchewan, Canada ..... unless I pay completely out of pocket, with no reimbursement.
Up here, I won't have access to the treatments you suggest until the 'fourth line' of therapy. After splenectomy fails. it is,
First line ... steroids
Second line ... splenectomy
Third line ... steroids again
Fourth line ... 'experimental' drugs

Oi.

Okay that's pretty horrible. I'm sorry to hear that you don't have any options outside of this really outdated order of treatments. Someone needs to update that list for modern ITP treatment ideas, but that's obviously out of your hands.

It's funny that the main ITP drugs are considered fourth line and experimental. *sigh* Sadly, they are definitely NOT cheap, so out of pocket is probably a nonstarter.

If you do end up with a splenectomy, it's not the end of the world of course I had mine 30+ years ago and I'm still here and kicking with my ITP. You have to do what you have to do, and maybe you'll be one of the people it works for if you have to go that route!

Thank you, Sandi, Hal9000 and momto3boys.

At times I am very discouraged. But your words are kind of like long distance hugs - for what it's worth, I feel less alone.

I think I should start a new thread about my journey tho, as I've hijacked this one long enough, Lol

Thanks again
Tess

Hi Tess,

My brother was diagnosed with ITP 3 months back. His platelets had gone down to 4k. He was immediately admitted and put through a course of medications.

The count rose to 50k but within 3 days dropped to 10k. He was readmitted. In the meantime while searching the net , found an accupressure treatment based on TCM.
Accordingly applied small magnets at some specific energy points. Within a week platelet count increased to 400,000. Then stopped the treatment.
Last week they drpped to 150000 so again applied the magnets and the count has started increasing.

I think u can try the above treatment. It is hundred percent safe and costs nothing. Kindly let me know so that I could send u the details.
Best of luck for your health.

Sanjay

Hi there,
Nice meeting you here! And congrats that you see some positive outcome from taking prebiotics. I am having ITP for more than a decade and have gone through the treatments most ITP people have. No obvious results in getting the count up so far. I was recently told by some friend to take prebiotics on a regular basis and am still wondering whether it will have any side effects. Do you feel uncomfortable after taking 900 billion dosage? E.g. faster heart beat or seeing more spots/bruise on your body?
I am so happy for you that you've got two babies!!! Wow!! That's really awesome!
Take care and look forward to hearing from you!

lipnose wrote:

Hi there,
Nice meeting you here! And congrats that you see some positive outcome from taking prebiotics. I am having ITP for more than a decade and have gone through the treatments most ITP people have. No obvious results in getting the count up so far. I was recently told by some friend to take prebiotics on a regular basis and am still wondering whether it will have any side effects. Do you feel uncomfortable after taking 900 billion dosage? E.g. faster heart beat or seeing more spots/bruise on your body?
I am so happy for you that you've got two babies!!! Wow!! That's really awesome!
Take care and look forward to hearing from you!

Hi lipnose -
My platelets have been doing fantastic. I have made it to a little over 100K platelets and I attribute this to the probiotics. Now, I am no longer taking the very high potency 90 billion. I am taking only 50 billion. My goal is to help my body heal so I don't have to take a lot of supplements.

900 billion is TOO HIGH. I would not advise anyone to take that much probiotics. Matter of fact it took me a lot to even go up to 90 billion. Please start small, try 15 billion then work you way up to a comfortable amount but I would not advise you to go over 100 billion. Do other things also to help you gut get healthy. Just google: Leaky Gut Syndrome. When the gut gets so damaged, they are holes that are formed and when certain food particles get through those holes our body reacts. Regardless of what your cause for ITP is, healing your gut goes a long way to improve your overall health. Try to avoid sugar as much as you can. Eat lots of cooked vegetables and healthy proteins. Good luck.

I had a platelet count of 0 before so I have been to the bottom and back and probiotics are really helping me. I also try to work out twice a week.

Hey MDgal,
Thank you so much for your quick response. I am taking 36 billion per day now and will see how it works. Also thank you for your suggestion regarding keeping a healthy gut function. I will definitely look that up and pay more attentions.
What kind of exercise are you having? Ever since I was diagnosed, I rarely have any exercises, either because it is easy for me to get very tired and the count drops dramatically, or being afraid of getting wounded and bleed.
Take care!

That is great to hear that the probiotics are really helping. I had a platelet count of 1,000 and was on the every 2 week platelet crash cycle where I needed IVIG and dex. Then in September I started seeing a homeopathic dr. I was taking 90 billion Probiotics at first (he told me that was too high a dose) now 30 or 60 billion but I make sure it is the one for healthy gut/intestines. In September, I went gluten free and low dairy and think that has helped me stay 150-200. On Promacta 25mg 3 times a week and hope to lower that soon. Also am on immuno modulators from my homeopathic dr.
Going to take my probiotic now and go to sleep.
Be Well

That is amazing! How is he doing now?
Thanks,
Cindy