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Does Alternate medicine work? 5 years 2 months ago #56239

  • Badami
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Hi
Was wondering if Alternate medicine works on acute ITP

My 19 year old son has acute and severe ITP

Can any one throw light on the success if alternate medicine.

Im residing in mumbai India.

Would appreciate some contact information for alternate medicine .

Have heard a lot about Chinese Medicine.

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Does Alternate medicine work? 5 years 2 months ago #56300

  • Melinda
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Badami we have had a couple people here who live in India - wish they would see your posts and respond.

I can tell you my acupuncturist told me acupuncture probably wouldn't work on my ITP since I've had it so darn long. She did suggest a couple things to try a few years back but I looked them up and wasn't sure they would be good with ITP so didn't try them. So far that is the extent of my knowledge regarding Chinese Medicine.

What is your son's count, how long has he had ITP?

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Does Alternate medicine work? 5 years 2 months ago #56301

  • Badami
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Hi

He has acute and severe ITP since a month now.

As of now he is on revolade and prednisone so the counts are up.
BLOOD test next week.
I read about Chinese medicine and it's benefits for ITP

But in india it seems difficult to find some good Chinese practitioner

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Does Alternate medicine work? 5 years 2 months ago #56334

  • tamar
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Hi Badami, what do you mean by "acute and severe"? There is no way to know if an ITP eposide is "acute" until it resolves (if it resolves).

If western medicine is working, I would suggest careful consideration before adding anything alternative or complementary. One of the most valuable things to know about ITP is which standard treatments will raise the platelet count (this is my opinion, of course). Changing other variables or adding other "treatments" could just make it hard to know what you can count on in the future.
The following user(s) said Thank You: eklein

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Does Alternate medicine work? 5 years 2 months ago #56340

  • Badami
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Hi Tamar
Thanks for the information.
I have read a lot about alternate medicine.
Since allopathic medicine (steroids)have huge side effects.
Was hoping that the alternate medicine would work.

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Does Alternate medicine work? 5 years 2 months ago #56818

  • John
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:whistle:

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Does Alternate medicine work? 5 years 1 month ago #56832

  • eklein
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I agree with what Tamar said and what John did not appear to read carefully. If you use multiple treatments at one time, you can't tell what works and what doesn't. And if you have a critical need for higher platelets you want to know what treatment can get you there.

Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Does Alternate medicine work? 5 years 1 month ago #56835

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Badami:- I'm a very experienced nurse and 2.5 years down the line with ITP.

I've lost response to every medical treatment I've tried so far.:- Prednisoline, +1 after the other; Azathioprine, MMF, Fostamatinib and Romiplostim and am loathed to try anymore. Now it appears I am losing my response to Pred.

I refuse point blank to have my perfectly health spleen removed so I'm now tapering my steroids and trying to restore my gut microbiome (google 'leaky gut syndrome' for more info) to see if that does any good.

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Does Alternate medicine work? 5 years 1 month ago #56838

  • John
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mrsb04,

I posted this thread some time ago. The original link was rewritten or taken down. But the theme of it remains and is core to understanding ITP. If you do not understand and work with this concept, you will forever be taking drugs and be at the whim of your ITP symptoms.

pdsa.org/forum-sp-534/8-natural-treatment-methods/26927-allergies-that-cause-itp.html

The reason you increasingly do not respond to various treatments is due to your immune system ramping up at ever increasing levels of regulation. The only way to get out of it is to calm your immune system (ie. deregulate it). It takes lots of time and effort and that is why no one really understands what is going on.

There are methods to help you accomplish this. There is no silver bullet or supplement that will change things. Start by understanding your allergens and sensitivities and avoid them. Take high potency probiotics daily. Place yourself on a very strict diet and eliminate sugar. Try Reiki and find a good homeopath. You might find it overwhelming and say what the heck. Take my spleen. But you will be back in the same place as you are now eventually. You have to start somewhere and the road of heavy drug treatments leads to a dead end.

Western medicine will not deal with the underlying problems. It will keep you alive but that is about it. You have to sort through your various issues and it is different for everyone. You need hope, perseverance and patience. Emphasis on patience. It will take a lot of time for your immune system to deregulate if you pursue natural methods. There are no quick pill solutions.

JMHO. And for any challengers to my point of view, my own success is a living example of what can be done. The problem is that it is not easy to get there.

Best of luck,
cheers,
john

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Does Alternate medicine work? 5 years 1 month ago #56839

  • John
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Erica,
What you and Tamar don't understand is the fundamental question: Why does an ITP patient progress through multiple treatments in the first place? Why are they increasingly not working. That is the entire point missed by the medical community and hemas that are treating with these hard drugs. If you keep throwing stuff at the wall, eventually something will stick, but only for a while. Great strategy and obviously does not work in the long run.
cheers,
john

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Does Alternate medicine work? 5 years 1 month ago #56841

  • eklein
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Why do some ITP patients have to go through multiple treatments? Because ITP, like, for example, low iron, or bad memory, or aching joints, or kidney stones, is not due to the same cause in all people where it appears. So the same treatment is not going to work on every person. Many here have responded long term to treatment. Sometimes luckily the first treatment. I responded long term to the third one I tried.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Does Alternate medicine work? 5 years 1 month ago #56847

  • John
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You want triggers? 20+ years of learning. No internet to help me figure it out. Cause and effect observation only. Common sense.
1. Chronic stress. Done that more than once.
2. Chlorine exposure (industrial settings to heavily treated public swimming pools). Done that.
3. Flu viruses. Done that.
All these can be simply triggers that put you over the edge. There can be multiple factors involved and that is why it is so hard to figure it all out.

The point is how did we get to the edge in the first place with our ITP?? If you start to break that apart and understand our immunology (eg. identify all allergens and sensitivities and deal with them), one can get somewhere. If we simply ignore the underlying symptoms for many years, we will likely graduate to new immune problems. I was really close to that happening with my ITP but turned it around. I almost think there is a point of no return, once you go past it, it becomes virtually impossible to reverse certain conditions.

And the problem with escalating drug treatments is that we forgo the entire process of trying to understand our natural immunology. We are not as motivated. Look, prednisone worked for years in my case. The only reason why I was in trouble in 2011 was that it stopped working as it should have when I had a relapse. That's when I panicked and started to work on this ITP thing in earnest. It took me 20+ years to realize that that is what I needed to do. Otherwise, it would have been same old same old.

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Does Alternate medicine work? 5 years 1 month ago #56848

  • Badami
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Dear John
Have read your messages.
Frankly very confused with them.

What are you suggesting?

My son has been diagnosed with ITP since Sept 2016.
His platelet's have crashed to 1000 thrice.

I believe that alternative medicine could work with itp.
Since I'm from India we do have quite a bit of influence of ayurveda and homeopathy.
However ITP disorder being rare the ayurveda and homeopathy treatment are not easy to find.
Please share your experience and your journey in ITP.

Badami

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Does Alternate medicine work? 5 years 1 month ago #56849

  • tamar
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Erica,
What you and Tamar don't understand is the fundamental question: Why does an ITP patient progress through multiple treatments in the first place? Why are they increasingly not working. That is the entire point missed by the medical community and hemas that are treating with these hard drugs. If you keep throwing stuff at the wall, eventually something will stick, but only for a while. Great strategy and obviously does not work in the long run.
cheers,
john


Wow, I wish someone had explained it to me sooner! John, it's one thing to not put your own faith in the medical community and your local hematologist, quite another to proclaim you've got the answers.

For others, and as I mentioned in another thread, believe what you read on the Internet at your own peril. And now, back to our regularly scheduled holiday weekend.....

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Does Alternate medicine work? 5 years 1 month ago #56850

  • John
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Thank you Tamar for your comments. I decided to take the high road and deleted my earlier comment to you. LOL

NB

Can't resist. In the spirit of the founder of this website, Joan is the one that inspired me at the very beginning in 2011.

Joan Young | PDSA Founder

Joan Young was diagnosed with ITP in 1992. After failing all the usual medical treatments available at the time, including a splenectomy, and suffering from numerous side effects from the medications, both Joan and her doctors thought she might not live. Joan decided to try the alternative treatments and lifestyle changes she’d read about in the hopes of improving her health. Working with other healthcare professionals, Joan slowly recovered from her ITP. Joan had her life back. When Joan went into remission, she could have walked away and put her frightening ordeal with ITP behind her. But frustrated by the lack ofinformation and support available for others afflicted with this disease, Joan created the Web site www.itppeople.com. Soon, people from all over the world found the Web site, shared their trials and successes, and learned of many options that could help them heal. The response to the Web site prompted Joan to create the Platelet Disorder Support Association and www.pdsa.org. Since the PDSA was founded in 1998, Joan has worked tirelessly on behalf of those individuals and families affected by ITP. She has personally answered thousands of phone calls and emails from people desperate for information, all along offering them hope and inspiration. Joan collaborates with top hematologists, researchers, and pharmaceutical companies working diligently to find new treatments for ITP and, ultimately, a cure.

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Does Alternate medicine work? 5 years 1 month ago #56851

  • John
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The following user(s) said Thank You: Badami

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Does Alternate medicine work? 5 years 1 month ago #56852

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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John
My ITP was almost certainly caused by by a bout of severe viral sinusitis.

Did you follow this link posted by ananta last week regarding the gut microbiome?

www.pdsa.org/forum-sp-534/6-general-itp-discussion/29444-new-series-tonight.html#56701

I did and watched all of them.

The physiology involved made perfect sense to me which is why I am trying it.
It might work it might not but I'm prepared to give it a go especially if it means I can get off higher dose steroids.

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Does Alternate medicine work? 5 years 1 month ago #56853

  • John
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Hi mrsb04,
Thank you for the link. I don't lurk here that often but stop in from time to time, so I did miss the post and link. The message is there. I strongly believe in the functional medicine theme discussed.
My biggest fear when I was battling a raging ITP condition in 2011, was that it would progress to another chronic disease in the long run (ie. cancer). I will watch the remainder of the series. It is long but I want to learn everything I can.
cheers,
john

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Does Alternate medicine work? 5 years 1 month ago #56854

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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John, would it be safe to say that removing gluten from your diet was the silver bullet to better counts ?

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Does Alternate medicine work? 5 years 1 month ago #56855

  • tamar
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Thank you Tamar for your comments. I decided to take the high road and deleted my earlier comment to you. LOL

NB

Can't resist. In the spirit of the founder of this website, Joan is the one that inspired me at the very beginning in 2011.

Joan Young | PDSA Founder

Joan Young was diagnosed with ITP in 1992. After failing all the usual medical treatments available at the time, including a splenectomy, and suffering from numerous side effects from the medications, both Joan and her doctors thought she might not live. Joan decided to try the alternative treatments and lifestyle changes she’d read about in the hopes of improving her health. Working with other healthcare professionals, Joan slowly recovered from her ITP. Joan had her life back. When Joan went into remission, she could have walked away and put her frightening ordeal with ITP behind her. But frustrated by the lack ofinformation and support available for others afflicted with this disease, Joan created the Web site www.itppeople.com. Soon, people from all over the world found the Web site, shared their trials and successes, and learned of many options that could help them heal. The response to the Web site prompted Joan to create the Platelet Disorder Support Association and www.pdsa.org. Since the PDSA was founded in 1998, Joan has worked tirelessly on behalf of those individuals and families affected by ITP. She has personally answered thousands of phone calls and emails from people desperate for information, all along offering them hope and inspiration. Joan collaborates with top hematologists, researchers, and pharmaceutical companies working diligently to find new treatments for ITP and, ultimately, a cure.


all fine and good, and glad you decided to take the high road! Here's a page that explains my position on this. It is up to everyone to decide for themselves what they are going to believe: www.sciencebasedmedicine.org/the-role-of-anecdotes-in-science-based-medicine/

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Does Alternate medicine work? 5 years 1 month ago #56856

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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I found episodes 2 & 3 the most interesting

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Does Alternate medicine work? 5 years 1 month ago #56857

  • John
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Hi Hal,
I don't believe there is a silver bullet to autoimmune diseases. There are multiple factors. That is just my opinion and experience of course. I tried many things starting with diet (which was gluten free) and then progressing through other alternative approaches. At the very end homeopathy was a big help. I was lucky to find a good practitioner who provided me with a personal remedy that works.
If you had asked me 10 years ago if I needed or should do any of this stuff, I would have said no. That I did not see the need for it. My taking prednisone was working when I got in trouble and that was good enough for me. It has been a long journey to discover better health and very well worth taking. I hope and wish everyone here eventually discovers the same for themselves. GL.
cheers,
john

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Does Alternate medicine work? 5 years 1 month ago #56858

  • John
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Tamar,

I get it. I have been there. Years ago my sister was big into homeopathy for her children's ear aches. I won't say I looked at the idea of using homeopathy with disdain, but I can say that I never tried to pursue any of her remedies for my children. I didn't think there was anything of value there. That was then.

While attending a lecture by a naturopath at my institution I had the opportunity to ask the following question: given the extreme scientific implausibility of homeopathy, and the overall negative clinical evidence, why do you continue to prescribe homeopathic remedies? The answer, as much as my question, exposed a core difference between scientific and sectarian health care providers. She said, “Because I have seen it work in my practice.”

There it is. She and many other practitioners of dubious modalities are compelled by anecdotal experience while I am not.


So now I am a believer. Why? Because homeopathy worked for me. Plain and simple. Sometimes there are things in life that we see but don't understand. I am a technical, scientific person, so it takes something tangible to convince me. It worked for me. If it did the same for you, you would change your opinion too.

cheers,
john

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Does Alternate medicine work? 5 years 1 month ago #56859

  • eklein
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If I wearing garlic necklaces and my platelet counts improved, I wouldn't assume the garlic necklaces caused my counts to improve. I would assume there were other reasons for the platelet count change. I tend to prefer research where n is greater than one.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Does Alternate medicine work? 5 years 1 month ago #56860

  • 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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I've been watching this thread. Thanks for staying civil! :woohoo:

I was a hard believer in traditional medicine only (since 1998) until the past year and a half. When I read stories about diet changing health for the better or any other kind of alternative method, I laughed to myself. I clung to the notion that only doctors can fix medical problems.

After nearly 19 years of battling many issues, I realized that nothing was getting fixed and in fact, things were getting worse. The meds were causing permanent side effects which only added to debilitation. I stopped trying new meds after using an arsenal. I began to hear great stories from people who had success with diet changes and tried it myself. Eliminating gluten and eating organic did make a difference when nothing else had. It's hard work though and very time consuming, so keeping with it is a challenge at times. Right now, I can't focus on myself due to other responsibilities but I hope to get back to it again soon.

My point is that being closed-minded, for me, was a bad idea. I wish I had listened sooner because some of my problems are now irreversible. I believed that nothing could be done about the assault on our bodies except using pharmaceuticals. I still use them, but I also eat as healthy as I can, NO fast food, few sweets, non-GMO, free-range, grass-fed, etc. The difference in taste is also amazing! As some of you well know, I strongly believe that there are reasons for the exploding health issues society is having other than genetic predisposition.

The bottom line is...there is no harm in changing eating habits for the better. Nothing bad could possibly come of it. Sadly, there is no money in researching diet changes so there never will be any studies. Follow the money....

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Does Alternate medicine work? 5 years 1 month ago #56861

  • John
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Erica,

Give me a little credit. I am not anyone's fool. I beat this ITP thing after a very hard struggle. I know enough to know what I know. No doctor or hematologist helped me get there.

I have posted a number of threads and highlighted many ways to make a change in our ITP conditions. If you cannot see value in that, then perhaps it is time to leave this forum alone. I don't think Joan Young would approve of your comment. The spirit has to be one of hope and progress.

There will be no magic drug for you Erica and your autoimmune conditions. You will be waiting a long time if that is what you are looking for.

cheers,
john

If I wearing garlic necklaces and my platelet counts improved, I wouldn't assume the garlic necklaces caused my counts to improve. I would assume there were other reasons for the platelet count change. I tend to prefer research where n is greater than one.
Erica

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Does Alternate medicine work? 5 years 1 month ago #56862

  • eklein
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I've been in remission since 2009. I guess I won't know if I 'beat this ITP' until I die before it comes back. Some of the likely explanations for my remission include Rituxan, dietary changes that I've written about on the forum (that were triggering auto immune flares) and luck.

I'm not sure if John is trying to put a curse on me or what ("there will be no magic drug for you Erica") but I don't look for or believe in magic, and in this thread all I've spoken out about is 1)caution about using multiple treatments because you can't tell what works and 2)caution about using personal experience and individual or anecdotal instances over scientific research that studies many individuals.

We have an informal agreement on this forum not to argue about 'alternative' treatments in this folder and I think I've honored that. In fact I only jumped in when I saw a personal attack (later deleted) Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Does Alternate medicine work? 5 years 1 month ago #56865

  • John
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Erica,
I am glad you are in remission and that Rituxan worked for you. BTW, are sure it was the Rituxan? :huh:
And the title of this thread is what?? The answer is yes it can. Notice the qualifier. I will be curious to know the next time you are faced with an autoimmune crisis - just what will you do? And don't forget that most readers of this thread and forum likely face this dilemma.

cheers,
john

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Does Alternate medicine work? 5 years 1 month ago #56868

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
  • Posts: 1929
  • Karma: 7
  • Thank you received: 556

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Does Alternate medicine work? 5 years 1 month ago #56892

  • Hal9000
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John, what I was asking about is what worked for you, and only you. Looking through old posts it sounded like eliminating gluten was, at least, influential. Have you found more beneficial influences?

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