TOPIC:

On October 2020, I celebrated my 3 year anniversary since my last IVIG which was on 10/16/17. It has been about 2.5 years since needing to do Promacta, prednisone, etc. I am wanting to share my story in case it helps even one person with ITP; I no longer have ITP.

I came back from a trip to Costa Rica and within 2 weeks developed life threatening, crashing platelets so bad that for 7 months I needed IVIG every 10 days along with daily Promacta, etc, (except for the month I was on heavy duty antibiotics). I feel compelled to reach out in case I can help anyone else become ITP free.

I'm 99% sure I got rid of the ITP problem after getting parasites out of my system. I took 2 weeks of Parasite Destroying Pills (from the vitamin store) and 2 Rife ultrasound treatments that targeted and destroyed the parasite cell membrane walls. I got well within one month after these two treatments and never needed IVIG again. I am ITP free since October 2017.

I understand every situation is different, but in the off chance that my story could help cure you or have you look into some other unusual cause for your ITP, it is worth reaching out. I even went to Mayo Clinic and they said there was no cure for my ITP. After Mayo Clinic, I was discouraged and had given up on ever getting rid of ITP until the next month a friend suggested that perhaps I had an undetectable parasite. Even though I had done several stool cultures that did not find any parasites, I decided I might as well give the parasite destroying medicine a 2 week try, what did I have to loose? And thankfully, I did try the medicine and Rife and within a month I was ITP free. My body was no longer attacking my plateletes that it had mistook for the parasites because the undetectable parasites were killed off.

I spent 7 plus months dealing with ITP: life threatening crashing platelets, steroids, Promacta and IVIG and I know how difficult it is. I am sending you all my good thoughts and strength as you navigate your ITP situation. Again, I know this might not be helpful to many of you but just in case anyone can benefit from my story, I am wanting to try and help. Please reach out to me with any questions or comments.

Best,
Cindy

Hi. I began to learn of your ITP management after your story posted on the warrior page. TY for being a voice in this area. Since 2006, I've been deeply involved in microbiome research. The microbiome contains bacteria, fungus, parasites, and more. The gut, having the largest microbiota load in our body, impacts 70% of our immune system. That your treatment targeted parasites would have also coincidentally modified other microbiota within the microbiome. That your platelets improved to normal limits with balance of the microbiome is fabulous. You are ahead of the curve in experimenting with, and now understanding, the power of the microbiome for ITP. In this regard, this paper caught my eye, recently published 2020 Zhang, Gut Microbiome and Metabolome Were Altered and Strongly Associated With Platelet Count in Adult Patients With Primary Immune Thrombocytopenia. If microbiome is associated with ITP, at least subgroups, diet and lifestyle can alter the microbiome in health promoting ways. We see this for other autoimmune conditions; IBD agruably is farthest along being studied were we use diet to induce remission, wean off medications, or improve response to medications. Here is the link to the ITP|microbiome paper I noted: www.ncbi.nlm.nih.gov/pmc/articles/PMC7360729/

Hi Patc393,
Your research article is looking at ITP and a possible cure in a whole new light. That is an amzing article of research that has shown ITP patients have problems at the gut level. It makes me feel like there is momentum in a new direction that can hopefully help many with ITP at the gut level and cure them. It is terrible to just receive paliative care if the ITP can be cured. I must admit it is a long article and I have only read a bit at this point but it appears very promising. Thanks so much for sharing it with us.
Best,
Cindy

I read the article a while back. An interesting theory which admits further investigation is necessary.
About 5 years ago there was an online functional medicine series called Betrayal. PDSA members were given free access to it. It was fascinating, all about improving the gut microbiome.
I changed my diet to a much healthier one and have been consuming a vastly increased amount of probiotics ever since. From a digestive system point of view things have been great but it hasn't made any difference to my ITP I'm afraid.

Hi Cindy, I found your post very interesting as I’ve felt that my ITP is somehow connected to my gut too, although no one’s listening to me. So sick of telling the consultants my symptoms and getting no reaction at all.
When you say parasite destroying pills are you meaning pills to get rid of worms or something stronger. I’m in Southern Ireland so maybe the language used is different? At this point I’m up for trying anything.

Clarry123

Have you been tested for H pylori at all?

Yes, mrsb04, I asked to be tested and it was negative. I live next to a forest with deer in it and we have a big tick problem so thought it was feasible. I've also been tested for Lymes but that was negative too.

Hi clarry123,
I too was so exhausted from trying to convince doctors that my problem was either virus or gut related.  And as you know, I pretty much gave up after the doctor at a very famous clinic in USA told me that I had ITP and that is that. Then my friend told me to go get RIFE treatment and that practitioner told me to get parasite cleanse pills at the vitamin store. I took Parastroy, parasite eradicating pills for a few weeks as instructed on the pill package. Does that explain it better? If not please ask me whatever questions you have. 

I wanted to share a bit more info with you so I cut and pasted a paragraph below to explain how Rife works:  You could find much more info if you google Rife. Also people have said they used the spooky2 machine instead of the Rife machine. But you can just try the parasite eradicating pills as a first step.  Always check with your doctor to make sure that the pills are safe for you before taking them.
  
Dr. Rife compared his experiments to an opera singer who breaks a wine glass by using her vocal cords. The sound made from striking and holding the correct musical note (frequency) would interact with the glass, causing it to vibrate and shatter.Everything in the world has its own natural frequency. The rife machine was designed to detect the natural frequency of bacteria, viruses,.... Like the opera singer and the glass, the rife machine emits a frequency to target the cells and causes them to die.

Sending you great healaing thoughts.  Please keep me posted if you try this and your ITP is cured because I am keeping a list of people who are helped. I am hoping to make this more accepted and used as a first line treatment for ITP patients.

Thanks and Best,
Cindy

Hi clarry123,
You may want to look at the following topic "Cured from Virus, parasite or bacteria that triggered low plts! Now free of ITP" under the All Topics tab on this website.  There is a lot more info and posts from various other PDSA members.  They mention they have used the Healy frequency machine and PEMF Machines with success.   
Cured from Virus, parasite or bacteria that triggered low plts! Now free of ITP

Cindy,
I hope you all had a good Christmas and New Year in these strange times.
I haven’t asked my doctor about the parasite killing herbs/drugs yet but definitely will be chasing it up now that Christmas is over with. Especially after yesterday getting a copy of my blood test results from 2015, a month after returning from Thailand. My platelets were 112, WBC 4.0 and neutrophils 1.70! If I was told I have no recollection and I can’t remember the symptoms but from the tests it looks like I was worried about malaria. The previous blood results taken a year earlier were all perfectly normal.
We’d stayed at an Elephant sanctuary for a week where I was badly bitten on my legs through thin trousers while cleaning out the elephant enclosures. The bites were red hot, raised and really itchy. I’d gone to 1st aid and was given antihistamines which I’d never taken before. So took them every 4 hours as I was told, until I ran out and went to a chemist were I was told I should’ve been taking only 1 a day! So I inadvertently overdosed myself and had withdrawals (itching etc) when I stopped taking them.
I’m quite shocked that it appears I’ve had this problem for nearly 7 years without knowing but at least I have another Avenue to explore. Something either happened due to the tropical vaccines I had to go to Thailand or while I was there. I have an appointment with a private Haematologist on Tuesday so will put it to her and let you know how I get on.
All the best
Clarissa

Hi Clarissa,
I was so happy to get your note. All your information about the elephants and blood results point to an infection or organism from your trip abroad. I did have incredibly itchy insect bites that lasted several days when I got back from Costa Rica.  I so hope that you can do something as simple as Rife Machine type electromagnetic currents and/or parasite destroying supplements and rid yourself of undetectable organisms and get rid of your ITP. For me once I got rid of whatever was triggering the ITP, I then needed several months to get my body back in balance. For example, slow weaning from prednisone and I took some homeopathics to get my adrenals stronger, etc.
Please keep me posted how your appointment went but please do not be disappointed if they tell you "you have ITP and get used to it."  That is what every hematologist told me.  I almost gave up until my friend directed me to the complementary medicine route which is how I ultimately got cured.
Sending you support and good healing thoughts!
Cindy