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Hello everyone -
I have been on these boards for years now. From being newly diagnosed and scared to trying conventional treatments and none of them working but almost killing me.

I then switched to natural treatments. I tried homeopathy, it brought platelets up temporarily but we never found my exact remedy so I was getting partial success. Then I tried nutritional balancing. Worked the best for me but was a lot of supplements to take (customized for my situation) and some of the supplements did not go so well with me. So after trying a lot I decided to take a break. Had 2 healthy babies after but with treatments during pregnancy as ITP flared up. So after baby #2 and struggling with platelets, I decided to give my body a break and stop all treatments. I was out of ideas at this point and splenectomy or promacta was what the Dr was really urging me to do. I wasn't ready yet.

So I decided to really analyze my situation (I get paid professionally to analyze things so why not my body?). As far back as my memory goes I have always had either digestive issues, or not being tolerant to one food or the other or yeast overgrowth..etc. My own analysis led me to the path of my digestive system needing some kind of support. I was already taking a one a day vitamin. So I decided to get back on probiotics a more potent form and see if I would get good results and also minimized my sugar and carb intake. I picked a brand I trusted and started with 25 billion organisms. Instantly I started feeling better, my monthly lab counts went to the 70's (from teens to twenties where I had been stuck for a while). After a couple of months I increased my probiotics potency to 50 billion organisms. Then my kids fell ill from daycare and I caught whatever they had . I knew my platelets will go back down to zero as they normally do when I fight infections. To my surprise my platelets were at 69 while I was so sick. My eyes opened wide. I could be on to something. So I increased my dose to 90 billion organisms and felt super. 90 billion is the best potency for me, won't be increasing anymore. To put things in perspective, our gut has about 100 trillion bacteria that helps us fight bad stuff.

So far I haven't had to see my doctor in 6 months. Haven't been doing the monthly lab counts as I haven't been bruising. Occasionally I start to bruise when I eat certain wheat products so I stay away from them. I have taken probiotics before but much lower doses and combined with a lot of other supplements that it wasn't working. Now I just do a one a day vitamin, try to eat mostly cooked veggies, avoid sugar (it encourages yeast growth) and take my probiotics

This is probably NOT a cure but it is keeping my counts high enough so I don't get treatment. I believe fixing my gut will completely make this go away. It is worth a try. If this post can help just 1 person then will be happy. My quality of life is much better now, don't have to obsess over bruises and constant blood draws. ITP sucks

Hey there! Nice to see you back!

I am also a believer in probiotics. I take one with 30 billion twice a day right now, I may increase it based on your post. Vitamin C is also very beneficial. I posted a video by Dr. Suzanne Humphries and she has me convinced.

Congrats on the babies!

Thank you for sharing this!!!!!! My sister has ITP and doing everything to help her..

Thanks for posting!!! What brand of probiotics did you use? Oh, and do you think the other supplements were interfering with the probiotics working before?

Hi
I use Renew Life Ultimate Flora. It has to be put in the refrigerator

Oh about the other supplements interfering, I Think it was that or maybe the brand of probiotics. I really believe the type you put in the fridge works better. Back then I was taking just the type that's on the shelf (not refrigerated). I would highly recommend nutritional balancing for anyone that wants to try something new. I did that and it helped balance me for a while. You send in a hair sample and the lab can tell you what your body is lacking and where your health is trending.

I had to post a response to this. I have been on a roller coaster of ups and downs with my platelets for the last year and a half.
I have been on a low dose of Prednisone which gets my counts up to safe, but when I have tried to taper below 20mg, my count has dropped way down. The last dip was 27K in August when I was at 5 mg. I had blood blisters and petechiae, so I went back up to the 20 mg. Count went up and I tapered down to 15 mg. The goal is to get me to a safe count at the lowest dose possible of Prednisone.

So, I read your post and I remembered with my last relapse of ITP about 10 years ago, I started taking probiotics and I completely recovered and counts returned to normal. (Normally, I run high in the 400K range, so until I see those high counts, I know that I haven't fully stabilized yet. I have no spleen, hence the high numbers when not dealing with active ITP.) When my counts returned to normal 10 years ago, I was only taking the probiotics to counter the negative affects of the Prednisone (like candida overgrowth), but at the time I picked up the book Patient Heal Thyself from Jordan Rubin and I realized it must have been the probiotics that did it. He tells the amazing story of his battle with Crohn's Disease (which is auto-immune) and how he was dying and how after all other treatments failed, his father received these packets in the mail from a friend who was a chiropractor or naturopath or something like that. It turns out that the packets were full of probitoics made from soil. When he took the HSO probiotics, they brought him back from the brink of death and not only healed his gut, but his health completely turned around.

Anyway, to my point...I ordered some of the most potent probiotics I could find through Garden of Life the end of August....and within 3 weeks, I have gone from a platelet count of 176K to 462K! Also, for the first time since this began, my neutrophils and lymphocytes have evened out. I usually have high neutrophils and low lymphocytes with the low platelet count. I know that Prednisone can sometimes affect your other counts, but I haven't changed my dose much to experience such a drastic affect.

Here are my recent counts:

8/21
Platelets 99K
Neutrophils 81.1
Lymphocytes 13.2

9/1
Platelets 176K
Neutophils 77.9
Lymphocytes 13.2

9/27
Platelets 462K
Neutrophils 48.7
Lymphocytes 37.2

So, the doctor asked me what I was doing when I went this week. I told her all I did was start taking some probiotics and she told me to keep taking them. I am tapering the Prednisone down again and we will see what happens, but for me, this is great news!

So happy for you mommabear!!!!! Probiotics are awesome. Now I believe what some people say that 80% of our immune system is in our gut and if we can fix our gut, we will be in better health.

My platelets are still holding up nicely. I am taking my probiotics religiously and not on any other treatment.

Wow, that is amazing how well the probiotics work for you! Thanks for the detail on what to take. I am going to start taking 90 billion tomorrow. I have been taking ones that don't need to be in the fridge. Fingers Crossed.
Stay Well,
Cindy

I spent 3 hours wading into the probiotic maze and settled on the renew life 90 billion mens and ordered it from amazon. I based my decision on the above discussion, 4.5 star product reviews, their 14 strains are listed on the bottle and seems complete, and I want to go big and see if there is any immediate or near term change in my health or platelet response. I will give it 30 days for sure! I had been taking amoxicillin when diagnosed and have been experiencing some digestive and regularity issues so this 30 day trial seems like a no brainer. I will post any significant changes in my CBC or lack there of.

I am not sure whether buying from amazon is a good idea if it needs to be in refrigerator. I once looked another probiotics review and someone said they got the package without ice pack, and it was warm because of traveling in the delivery truck whole day.

Let us know how it goes Cindy. I am so happy Probiotics are helping some of us

thomaskm wrote:

I spent 3 hours wading into the probiotic maze and settled on the renew life 90 billion mens and ordered it from amazon. I based my decision on the above discussion, 4.5 star product reviews, their 14 strains are listed on the bottle and seems complete, and I want to go big and see if there is any immediate or near term change in my health or platelet response. I will give it 30 days for sure! I had been taking amoxicillin when diagnosed and have been experiencing some digestive and regularity issues so this 30 day trial seems like a no brainer. I will post any significant changes in my CBC or lack there of.

I have tried different brands and different types of probiotics (refrigerated vs unrefrigerated). I have found the type you put in the fridge to be more effective. I wouldn't order from amazon if I was you. If you have a vitamin shoppe or Whole Foods around where you live, they carry refrigerated brands. The Garden of Life brand works wonders for some people but it didn't do much for me. I like the renew life brand. Its just trial and error till you find a brand that works well with your system. If you are new to probiotics, you may get some gas the first few weeks of taking it. Good luck and here's to more platelets for all of us.

Sandi wrote:

Hey there! Nice to see you back!

I am also a believer in probiotics. I take one with 30 billion twice a day right now, I may increase it based on your post. Vitamin C is also very beneficial. I posted a video by Dr. Suzanne Humphries and she has me convinced.

Congrats on the babies!

Hi Sandy!!! These forums really helped me when I was new to this whole ITP thing. I have heard about Vitamin C being really helpful for immune problems. Will give it a shot too

Have you heard the latest report about probiotics? A cardiologist is telling everyone to stop taking them immediately! I missed the story and will have to look for it.

Sandi wrote:

Have you heard the latest report about probiotics? A cardiologist is telling everyone to stop taking them immediately! I missed the story and will have to look for it.

Hmmm why? Probiotics are in yoghurt, kefir etc. yeah would like to see the article. I don't see how probiotics can cause any harm when it's basically a tiny fraction of good bacteria that is going in to support the gut.

I'll try to find the story, but I won't stop using them. You know how things like this go. Sometimes it's nothing but hype.

Hi MD Gal,
Thanks for checking in on me.

I just completed this timeline I wanted to share.
Time between IVIG Treatment for low platelet count since my ITP started 5/1/17.
5/9 to 5/20 11 day period
5/20 to 7/12 7 weeks
7/12 to 7/28 16 days
7/28-to 8/12 15 days
8/12 to 8/26 14 days
9/4 to 9/22 18 days
9/22 to ?????? 20 days and counting.......103,000 platelets as of 10/12 , but was 170,000 on 10/6.
For me ITP is like a box of chocolates...never know what tomorrow will bring but I am hopeful. I am on VSL 102 billion probiotics, and for 2 weeks now A bunch of homeopathics, and eating gluten free. Also since 9/14 on 75mg Promacta from 50mg
WBC 8/14 till present WBC have ranged from 1.8 to 4. So they did a bone marrow biopsy to check it out. They say that beieve it will show no bone marrow or cancer issue. Results in 1 week.
Be Well,
Cindy

Cindy1 wrote:

...
For me ITP is like a box of chocolates...never know what tomorrow will bring but I am hopeful. I am on VSL 102 billion probiotics, and for 2 weeks now A bunch of homeopathics, and eating gluten free. Also since 9/14 on 75mg Promacta from 50mg
...

Ok, just to be clear. There are no probiotics in chocolates

Whatever keeps the evil IVIG rescue monster away is what matters. Cheers to Probiotics, No Gluten, and not to forget: Promacta !

Hi Hal,
Thanks for the laugh!
Have a great weekend!
Cindy

Time between IVIG Treatment for low platelet count
5/9 to 5/20 11 day period
5/20 to 7/12 7 weeks I believe due to triple antibiotic therapy
7/12 to 7/28 16 days
7/28-to 8/12 15 days
8/12 to 8/26 14 days
9/4 to 9/22 18 days
9/22 to 10/16 so far 24 days on 10/16 back down to 5,000??? 172,000 on 10/6, 103,000 on 10/12.
I am on Promacta 75 since 9/22 and started gluten free and homeopathics 2 weeks ago. I am on VSL 112 billion probiotics.
Oct 12, 2017 bone marrow biopsy. Preliminary results no cancer . My WBCs have been ranging between about 1.8 to 3.7 over the past couple of months.
Oct 16 got IVIG and am on a 40mgX4day Dex burst.

They think I have an autoimmune ITP. However it started 4/15/17, Fifteen days after I returned from Costa Rica. I still think it was infection of some kind especially since I had a 7 week remission on antibiotic therapy. I think my next step is getting an upper gi and pray they find something on the biopsy. All the infectious disease doctors say they have no reason to put me on antibiotics again?!?

The only other thing they are telling me to do now is Rituxin but I'm gonna wait till after I get an Upper GI.

Any thoughts would be appreciated.

Cindy

What are they looking for with the upper GI? I'm not sure how that fits in.

I don't think you want them to find something on the biopsy. It probably wouldn't be good and could be worse than ITP.

I want them to find hpylori or something that they can treat with antibiotics. I just read the newsletter and 40% of ITP patients have hpylori that improves with antibiotic treatment. But sometimes hpylori needs to be retreated. I had that positive blood test back in May and was treated with antibiotics and had remission for 7.5 weeks.

I just posted a note about Lupus questions. I am thinking you might have some insights....
Thanks!

Are you in Lupus remission?

Finding H-pylori antigens in your blood indicates you had, but may not still have H-pylori. "However, breath and stool tests are better at detecting active H. pylori infections than is a blood test. May 17, 2017"
Yesterday while waiting for my Nplate shot (a 98 day!) I was reading about the H. pylori / ITP connection (because of this probiotic thread..lol). I was not happy with what I found. A Japanese study that basically concluded that it was the "Treatment" for H. pylori that caused remission even in patients that never had H. pylori in the exact same ratio as active H. pylori patients. Leaving me to believe that a course of H. pylori antibiotics should be given to all diagnosed ITP patients immediately upon diagnosis. The article went on to state speed was of the essence as the T-cells rather quickly morph into platelet killers. That what I got from it.... Leads me to believe the protocol for new ITP patients should not be "test for H. pylori" but "Treat for H. pylori". This healthy gut thread has my wife and I jumping thru hoops as she developed a candida overgrowth that has her sick and a huge bright red rash in her armpit. This week we stocked up on our probiotics.

Cindy - No, I am not in remission from Lupus. I haven't been lucky enough to have one since diagnosed in 2006.
Most of the studies done in the US have shown that treating H. Pylori does not help ITP. Japanese studies have shown that it does, but it is assumed that they may have a different strain that responds to antibiotic treatment. It never hurts to try though.

Cindy1 wrote:

I want them to find hpylori or something that they can treat with antibiotics. I just read the newsletter and 40% of ITP patients have hpylori that improves with antibiotic treatment. But sometimes hpylori needs to be retreated. I had that positive blood test back in May and was treated with antibiotics and had remission for 7.5 weeks.

I just posted a note about Lupus questions. I am thinking you might have some insights....
Thanks!

Hi Cindy-
When I was newly diagnosed, I asked them to check for h pylori and it came back positive. With all the steroids I was given my platelets were still so low. During the antibiotic treatment for the hpylori my counts went back to normal, to mid 200's. Unfortunately it only stayed there while I was taking the antibiotics. As soon as I finished the treatment, the platelets tanked.

I had a 7.5 week remission from ITP when I had triple antibiotic therapy for hpylori. Other than that I have had 14 to basicall 4 day remission. I know it is hard to erradicate hpylori so I have begged doctors to give me more antibiotics with no success. I am getting the Upper GI in hopes he can biopsy something. That article you found is quite interesting, never saw that all ITP pts should be treated.

I had them give me triple abx treatment flagyl, clindamycin and amoxicillin and peptobismol for 2- 3 weeks I think. My platelets went up to a million. I was on prednisone and had IVIG too. But I had that stuff almost every crash minus the antibiotics.

Sucks no Lupus remission!
I get what you are saying regarding the Japanese vs our strain.