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Possible Underlying Factors of ITP

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #28647 by Sandi
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.

Chronic Allergies

We know through countless medical studies that allergies up-regulate the immune system. What I look for, in the patients I see, are chronic “hidden” food allergies that may cause this upregulation. The person with ITP is usually unaware that they have these allergies and therefore continues to expose him/herself to the offending agent.

Many people have had the traditional skin testing for IgE inhalant allergies including dust mite, dog, cat, and mold. Some people have had skin testing for food allergies as well. IgE skin testing detects immediate (or fast acting) allergies. Many patients I have interviewed have been told by the allergist that their test was negative yet when they got home and went to get in the shower discovered that their back was a mass of red blotches. These people may have food allergies but reacted more slowly than the allergist expected. In my experience these food allergies can decimate health.

It is very rare that I see a patient with an autoimmune disease who doesn’t have some significant food allergies. What is often over-looked by most allergists are delayed food hypersensitivities caused by IgG (IgG is a slower acting immune globulin that may respond in minutes to hours as opposed to the fast acting IgE which may cause a response in seconds to minutes). A typical IgE response would be difficulty breathing due to exposure to shellfish. This response is usually immediate (seconds) and severe. A typical IgG response could be abdominal pain due to eating wheat. This response may occur within minutes but may take hours. This makes identification of the allergy more difficult since obviously you know that the shellfish caused your breathing problem but if your stomach is aching this afternoon you don’t think back and connect that ache to the bread you ate at lunch.

These hidden food allergies are usually caused by the foods you eat most often. In the U.S. the most common food allergies are: milk, eggs, wheat, corn and citrus. That having been said, any food that you eat a lot of may be an offending agent. (If you only eat a food a few times per year or if you dislike a food then it is very unlikely you are allergic to that particular food regardless of how common it is in everybody else).

Every patient with ITP or any autoimmune disease seen in my clinic will get extensive testing for both types of food allergy IgE and IgG. (We will not go into detail the exact mechanism of how food allergy increases inflammation and up-regulates the immune system. Elevated immune globulins trigger the inflammatory cascade through their upregulation of several inflammatory cytokines. Chronic elevation of these inflammatory cytokines will upregulate the immune system day after day, year after year until the offending food is removed from the diet).

Remember your body now attacks these food particles as if they were foreign substances producing large amounts of inflammatory intermediates which upregulate immunity and over the course of time may contribute to your body losing its ability for self recognition.

Stool Infections

It has long been suspected that parasitic infections can be a triggering event in the development of autoimmunity. Due to improper hygiene parasitic infections were common, yet we tend not to think of parasites in modern America. In the U.S. parasitic infections are far more common than we think. In my practice I see three reasons for this: 1. Food preparation is usually one of the lowest jobs available, therefore it is common for people from the third world to take these jobs upon arriving in the U.S. If these people have parasites and do not wash their hands properly they may infect many people (even at very expensive restaurants). 2. Americans are traveling to the second and third world in record numbers. Asia, Latin America, Mexico, and Africa are all very hot destinations for American tourists and if they are not careful and make one mistake they can become infected. 3. Resort cabins: Many people have resort cabins on lakes where the well water has become contaminated by sewage and they pick up a parasite from their water.

Detection of parasites is much more difficult than you would think. Often routine stool tests do not detect the parasites and in depth stool studies are needed. That’s why I do extensive specialized stool studies on all patients with autoimmune disease. Even these special tests, done by the best lab in U.S only find a minority of the parasites that may be there. Estimates are that regular hospital labs may miss the majority of the parasites that are in the bowel. The reasons for this are many fold including: They are looking for a “needle in a haystack” there is a lot of stool and parasites are small and easily missed. Second it’s not the most sought after job in the lab and therefore the person doing the studies may not have the experience or expertise required. In addition to visual stool evaluation I also order parasite EIA studies on the stool. The EIA detects antigen to certain parasites that although you don’t see the actual parasite, if you find antigen it’s a good bet that the person is infected.

Another common and tragically overlooked infection of the bowel is pathogenic bacteria or yeast overgrowth. We know that many species of yeast have been shown to up-regulate immunity. Many researchers now believe we have a symbiotic relationship with the yeast in our bowel. A small amount of yeast may actually help our health since it improves our immunity and may help us fight off other more serious infections. What happens however is too much of a good thing. Yeast or fungal overgrowth may cause over stimulation of the immune system. This chronic up-regulation combined with certain genetic factors may trigger the immune system to start attacking you, the person it was meant to protect, and in some people the system that gets attacked are the platelets.

What causes yeast/fungal overgrowth in the bowel? For the vast majority of Americans it is due to over use of antibiotics. Antibiotics are not evil but they are also not species specific, they kill all bacteria that are sensitive to them good or bad. While they are reducing the bacteria we want to kill, let’s say in your lungs, they are also killing the good bacteria that your bowel needs to be healthy. It is these good bacteria that help control other possible pathogenic “bad” bacteria and yeast. So if you have had repeated courses of antibiotics or have had strong antibiotics for a prolonged period of time (several weeks) for a serious infection your bowel bacteria can become decimated.

The reduced amount of “good” bacteria in the bowel allows other “bad” bacteria and/or yeast to overgrow. Your body then recognizes this as an infection and attacks the pathogenic bacteria and yeast producing large amounts of inflammatory cytokines which upregulate your immune system. Since a large percentage of your immune cells are centered near your bowel this attack can be powerful. Our immune system has trouble killing these tough “bad” bacteria and yeast so you can wind up with a chronic immune stimulation that releases large amounts of inflammatory cytokines causing chronic immune upregulation and eventually contributing to autoimmunity.

The overgrowth of yeast/fungus in the bowel is controversial since we were not taught about it in medical school or residency yet since baby boomers were the first generation routinely exposed to antibiotics this is a relatively new phenomenon. If you have had multiple courses of antibiotics or have had long term antibiotics for acne or other infections then in my opinion you should have evaluation for pathogenic bacteria and/or yeast overgrowth of the bowel and appropriate therapy where indicated.

The appropriate evaluation by a physician experienced in the evaluation of bowel overgrowth and the treatment of that overgrowth, if present, is extremely important. Most people can proceed with this evaluation and treatment of parasitic, bacterial or fungal bowel infections while they are on other medications which are required to control their ITP.

Gluten Sensitivity

Research done on patients with bowel inflammation suggests that gluten may be a significant trigger of autoimmunity. Of the thousands of people I have seen with autoimmunity most have not been adequately screened for gluten intolerance/sensitivity. I have also seen other patients that have “borderline” positive gluten antibodies yet their doctors did not recommend removal of gluten from their diet.

In my opinion every person with ITP must have a work up for gluten sensitivity. If the antibodies are positive, borderline, or even high positive a gluten free diet should be given a several month clinical trial. In my experience one must watch the platelet count for several months after instituting a gluten free diet to determine the success or failure of this intervention. Gluten appears to be an increasing source of immune stimulation in the U.S. and the elimination of gluten (if warranted) may prove to be an important step in down regulating immunity in the person with ITP.

SUMMARY

In my opinion evaluation of food allergies, bowel dysbiosis (overgrowth of abnormal bacteria or yeast) and gluten intolerance should be considered in every person with autoimmune disease. This evaluation can be completed without altering the patient’s current therapy and, if found, treatment can be instituted without withdrawing the patient from medications.

In my clinical experience reducing these possible immune triggers from the environment often reduces immune stimulation, therefore reducing the production of pro-inflammatory cytokines. This, when combined with ongoing immune therapy, may produce a more desirable outcome than medications alone.

This is especially valuable in the difficult to control case of autoimmunity or ITP. Diagnostic procedures would include a complete digestive stool analysis, IgE and IgG food allergy evaluation, and anti-gliadin antibodies looking for gluten sensitivity. All of these studies are easily done and in experienced hands can provide a tool for evaluation and reduction of possible immune triggers that could exacerbate or be an underlying factor in the development of ITP.

Dr. Edward Conley is an Assistant Clinical Professor of Medicine, Michigan State University and Medical Director of the Fatigue, Fibromyalgia, and Autoimmune Clinic of Michigan. Phone: 810-230-8677 Web: www.cfids.com
The following user(s) said Thank You: Lady Elly, firkins, kym, adengen814, Becounted, khatibj1@gmail.com, mhprice2000@msn.com, Vancouver40, durgama, Painter13

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #28648 by Sandi
Replied by Sandi on topic Possible Underlying Factors of ITP
I think this is a good article, but is missing other important possible underlying factors.
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12 years 3 months ago #28782 by firkins
Replied by firkins on topic Possible Underlying Factors of ITP
Sandi, is there a link on this site to OTHER possible underlying factors? thanks!

Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #28787 by Sandi
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12 years 3 months ago #28830 by firkins
Replied by firkins on topic Possible Underlying Factors of ITP
Sandi -- thanks so much. Sorry for the rather late reply -- for some reason this went into my spam filter. Very grateful. Dense reading but excellent. Firkins

Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 3 months ago #28855 by Sandi
Replied by Sandi on topic Possible Underlying Factors of ITP
You're welcome!

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11 years 3 months ago #37511 by runnershirl
Replied by runnershirl on topic Possible Underlying Factors of ITP
Thanks for this info...So very useful. I noticed shortly after my 3yo was diagnosed that she LOVES "gogurt". Being of the belief that it ws good for the intestines, and likely better than "junk food snacks" we would let her eat up to 3 a day, if she requested (but would eventually have to put our foot down, when seh wanted more.) We noticed, or thought we did anyhow, that after she would eat a lot of it, her #'s would tank shortly thereafter. I'd withhold the dairy (which consequently, both me and hubby were allergic to as babies) and whallah...improvement.

I've inquired with our hemo on:

1) could dairy affect her platelets or be her root cause of ITP (short version)
2) could celiac be a root cause
3) could my thyroid condition be a root cause, if she were to indeed develop it since both parents have thyroid conditions, and she was born 11.3oz
4) could she have inherited other autoimmune disases such as psoriases, which could be her root cause?
5) Is there a diet that is better for ppl with ITP (eliminate ....)?

The answers to all of my inquiries have been the same...no tests for that, no proof that it's related, and essentially blew me off like I was grasping. So, it's quite relieving to see that I'm not grasping that hard afterall, these things could potentially be related, and in essence, if there's a test available to detect if she has one of these conditions, what is it, and if its a simple lab, why can't we do it? (PS..I'm also allergic to dust mites, so if she inherited that too, that could be another contributory factor.)

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10 years 3 months ago #44841 by Falcons1
Replied by Falcons1 on topic Possible Underlying Factors of ITP
I have been diagnosed with ITP about a year and a half ago. Had a bone marrow biospey two months ago to confirm platelets being made in the bone marrow and being destroyed later. When I read your article I was really interested in the allergies. I am a 64 year old male and get a bad cough almost every year sometimes more than that. Everyone thinks I am a smoker for the way I cough but never had smoked. It lasts not for days but sometime for a couple of months. I get to the point where I cough so much I almost lose my breath. I have seen the doctors about it but no luck, been to a ENT with no luck either. Tried allergy pills no luck. Is this something I should mention to my hematologist.

thank you

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 3 months ago #44842 by Sandi
Replied by Sandi on topic Possible Underlying Factors of ITP
Falcons:

Hi there. A bone marrow biopsy does not prove that platelet production is adequate. That is a common misconception that most doctors believe. Most people with ITP do in fact have production problems in addition to destruction. That has been known for several years but that info has not seemed to trickle down.

pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

As far as the cough, it most likely isn't related. I get the same thing every year, sometimes twice a year. It's basically bronchitis and it does last months. I usually go through two or three rounds of antibiotics. Have to sleep sitting up, can barely walk from one room to another. I chalk it up to some irritant that I cannot identify, but once you get it, you become more susceptible to getting it again due to lung damage. I've had pneumonia also. You could mention it to your Hemo, but more than likely, he will not think much of it as far as ITP goes.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 1 week ago #46158 by EmilyK
Replied by EmilyK on topic Possible Underlying Factors of ITP
How does one find someone to do this testing locally. I live in the Phoenix Arizona area. I was diagnosed only a few weeks ago, but apparently have a severe case and so far nothing, other than daily steriod injections, has allowed my platelets to stay about 13,000. Looking for help.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 1 week ago #46168 by Sandi
Replied by Sandi on topic Possible Underlying Factors of ITP
What kind of testing? What treatments have you tried so far?

I've never heard of steroid injections for ITP.

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5 years 3 days ago #68521 by Gkm1
Replied by Gkm1 on topic Splenectomy
Hi Sandi. Is splenectomy an ultimate solution for ITP patient

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  • Vancouver40
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  • Received diagnosis of ITP in July of 2016 after going to emergency in Vancouver, BC, Canada and finding I had 3 platelets at that moment. Repeatedly had crashes every 3 to 6 months. In 2019, one crash & 2020, after an imminent crash, raised them naturally
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4 years 7 months ago - 4 years 7 months ago #69418 by Vancouver40
Replied by Vancouver40 on topic Possible Underlying Factors of ITP
Is Visceral Leishmania(sis) a very real potential cause of ITP? It is a parasite that impacts the spleen, liver and bone marrow specifically, which are all organs impacted significantly by ITP.

After having being diagnosed with ITP in July 2016, I've been able to naturally increase my platelets twice this year 2020 by taking daily natural supplements Monolaurin (3xdaily w meals), Probiotic by Renew Life (80 billion Bacteria, Once daily), Multi-mineral supplement EMP plus by TrueHope (two pills x 2 daily w meals), as well as drink electrolyte beverage Pedialyte (Unflavored, 500mL-1L daily only for a couple consecutive days until numbers pick up). I also take Zinc (50mg) several times a week and Vitamin D3 (50K IU) & K2 (15K Mcg) once a week. They increase my platelet count and have remained up on two occasions this year when they declined.

After finding out about Visceral Leishmaniasis from the show Monsters Inside Me (Season 6, Episode 4, #50, Animal Kingdom) where the person had traveled to Spain (As I did in November 2015) and got bitten from an infected Sand Fly. He was hospitalized after 6 months with an enlarged spleen and it was removed. When they ran further tests on the spleen, they discovered the single celled parasite Visceral Leishmania(sis). After further research, this parasite replicates by being introduced from a bite of a sand fly and when it is consumed by a human's white blood cell, which is normal for eliminating foreign organisms intruding the body, it then goes to the spleen to be eliminated. There the parasite continues replicating inside the white blood cell until the white blood cell explodes, destroying the white blood cell and then also expanding the spleen in the same fashion, since there are so many exploding white blood cells inside.

From the research I did this week on learning about this parasite, a study showed patients with Visceral Leishmaniasis have very low levels of electrolytes. Hence why the electrolyte beverage Pedialyte potentially worked to increase my platelet count dramatically in a short time for me this year and one reason why my platelets increased naturally I think.

Lastly, I learned about Visceral Leishmaniasis this past week and will be calling my hematologist on Monday July 13th 2020 to ask if a Leishmania(sis) Serology test was done when I was hospitalized the numerous times over the past 4 years. If not, I will be asking to take one immediately this week to get results. As for treatment if my test comes back positive, my research shows that Miltefosine, an oral medication taken over 28 days, will help eliminate the parasite 90-95% of the time.

Has anyone had any experience with Visceral Leishmaniasis? Please comment if you have as that would be very helpful.

Wishing good health, strong platelets for everyone. God Bless.

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3 years 10 months ago #71095 by Painter13
Replied by Painter13 on topic Possible Underlying Factors of ITP
Wow! I have often wondered if yeast infections could have caused me many problems and now ITP or at least a significant factor! A friend of mine said tackle the yeast in your system and see if you don’t feel better! How do I go about finding help? Still probably have to stay on course with my Doctor! Good info!

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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3 years 2 months ago #71952 by Cindy1
Replied by Cindy1 on topic Possible Underlying Factors of ITP
Hi All,
I have been cured of ITP for 4 years!
The underlying factor of my ITP were microbes like parasites in my gut. Once I was treated with Parasite destroyong pills for about a 3 week period of time along with 3 electromagnetic frequency treatments targeting eradicating parasites, my ITP rollercoaster of 7 months was cured in October 2017. 

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  • GrouchoMarx
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  • I would never recommend an illness that choses people like me.
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3 years 1 month ago #72026 by GrouchoMarx
Replied by GrouchoMarx on topic Possible Underlying Factors of ITP
healthpath.com/gut-health/parasite-testing-need-to-know/

Apparently only through a PCR test the parasites can be detected. Normal H Pylori test will not. My itp came out just after a mission in a developing country. Btw after I took Hpylori killer my itp raised without medication but it didn't last a month.

Why doctors are not exploring this path?
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3 years 1 month ago #72036 by MelA
Replied by MelA on topic Possible Underlying Factors of ITP
I just don't get the undetectable parasites - and I wouldn't treat anything that isn't detected [that would be like getting chemo for undetected cancer].    I don't mean to be ugly, if I am I apologize.  But it doesn't make sense.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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2 years 11 months ago #72202 by Toby-Wan-Kenoby
Replied by Toby-Wan-Kenoby on topic Possible Underlying Factors of ITP
H. P. Is iradicated by antibiotics. Whenever I have to take antibiotics my platelets increase significantly. This points to some gut bacteria causing the immune trigger. 

Diagnosed 7/2019 let the fun begin...

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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2 years 11 months ago #72206 by Cindy1
Replied by Cindy1 on topic Possible Underlying Factors of ITP
Toby-Wan Kenoby,
So excited to read your post and hope that you can get rid of your ITP!  Also, I really hope your post will enlighten people with ITP to use this information to get well. Additionally, I hope that research will be done to prove this correlation of antibiotic therapy and the platelets stabilizing to within normal limits. However as noted below, I needed RIFE treatments and parasite destroying pills to finally rid me of my ITP in October 2017. Unfortunately, the organism that was inside of me could not be eradicated by antibiotics.

But what happened to you when you took antibiotics is exactly what happened to me. After my platelets crashing every 7-10 days from April 2017 to June 2017, I convinced a doctor to treat me for h-pylori. She gave me triple antibiotics and during my 4 week course of antibiotics my platelets did not crash to levels necessitating my usual every 7-10 day IVIG and dex burst.  During the 4 weeks of antibiotic therapy the platelets first shot up to 1 million (due to N-plate shot and Promacta) then moved to within normal limits until after the antibiotics course was completed. Unfortunately, then they quickly crashed back down to dangerously low levels and IVIG and dex bursts were resumed every 7-10 days for my crashing platelets.

This next platelet crashing cycle went on from July 2017 until Oct 2017. The important point is that my platelets stopped crashing after I had 2 RIFE machine treatments, took a two week course of anti parasite pills from the vitamin store and had some homeopathic remedies for a variety of organisms.
To this day I can not tell you what organism was inside of me that triggered my body to attack its own platelets from April 2017 until Oct 2017.  What I can tell you is that I have been free of ITP since October 2017, one month after I did RIFE and antiparasite pills.
Thanks for sharing your experience of antibiotics improving your platelet count and your hypothesis of some gut bacteria causing the immune trigger.
Cindy

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2 years 11 months ago #72222 by JJ
Replied by JJ on topic Possible Underlying Factors of ITP
The UK ITP Association financed a study into gut biome and ITP. I took part in it. Unfortunately no connection was shown. That doesn't mean there isn't one, just that none could be shown.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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2 years 11 months ago - 2 years 11 months ago #72225 by mrsb04
Replied by mrsb04 on topic Possible Underlying Factors of ITP
JJ
I was at the ITP Association Conference the year  Prof Hunter presented his findings. 

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2 years 10 months ago #72257 by JJ
Replied by JJ on topic Possible Underlying Factors of ITP
The conference is on line again this year. See you there!


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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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1 year 1 month ago #73442 by Cindy1
Replied by Cindy1 on topic Possible Underlying Factors of ITP
Hi,
Did you ever take Parasite destroying medicine from a Vitamin Store? If so, are you free of ITP?  I hope so!
You recall, soon after the course of Parasite medicine (along with other homeopathics) that I took, I never needed IVIG again. I have been free of ITP since 2018.

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  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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2 months 1 week ago #73757 by Cindy1
Replied by Cindy1 on topic Possible Underlying Factors of ITP
Hi GrouchoMarx,
Just checking in. I hope you are doing well.
Cindy1

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