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No drugs for 4 years: my story / encouragement 8 years 7 months ago #41078

  • JazzenJanzen
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I like telling my story.. if it can help even one person, it's all worth it...
So here's the super duper nut shell version thus far:

March 2010:
  • Diagnosed with a count of 14.
  • Hospital docs give me 60mg of Pred.
  • With no insurance or Hema, I ween myself off of Pred over 2 months.
  • Go sailing with a count of 11K...I'm done with obsessing over a number and not living.

May 2010:
  • Finally get a Hema who wants to try other drugs and take my spleen out. I say "no.. I want to do nothing and see what happens... because I have ZERO bleeding symptoms"
  • Hema is nervous, but I put my stubborn foot down and am getting peeved that no one is looking at ME..just a piece of paper with a number on it. :angry:

July 2010:
  • Latest count: 16
  • Do a supervised 2 week water fast (Yes...water *only*...This is a whole other story in itself)
  • After that, my count starts living in the high 20's/low 30's.

And stays there....
And stays there..........
Aaaaaannnnnd....... 2 years later....

March 2012:
  • I have a cranial sacrial session that's *very* intense with lots of emotional release... count bounces up to 66k. :woohoo:
  • A month later...drops back into the high 20's/low 30's

And stays there....
Aaaaaaannnnddd fast forward to...

July 2012:
  • I meet a man who does personal growth work (which I had never heard of before)

August 2012- Present (April 2014):
  • I've been working with him on all kinds of emotional release, dealing with past issues, old habits, etc.... Every time I have a major break though, my count bounces up into the 60's, and then dips again.

In super summery:
After 2 years of my platelets being rock solid stubborn and not moving an inch, they're finally moving and bouncing about. And the only thing that seems to be doing that is the personal growth work. (And it's serious work)

I eat well: I'm gluten free, eat lots of veggies, salad, fruit, and beans. Very little dairy (if any), and very little meat.

I also tried homeopathy... Where some folks have had great success in this vein of treatment, I've had none. (At first I thought it was working...but then figured out it was the personal growth work I was doing).

So there you have it! That's my story up till now. I truly hope everyone is treating the PERSON and not the number. For me, my thought is: if I'm not having any bleeding symptoms & clot just as well as anyone else, than why obsess over a piece of paper that says nothing about my body? So I bleed 5 minutes more than Joe Shmoe...and?... What?

My last count was 33 a month ago.... and I'm about to do TWO workshops this next week (almost back to back! Phew! They're called Embracing Emotions, and Finding Your "NO"... Oh yeah.. good stuff). It'll be interesting to see if my count goes up.... it'll all depend on what kind of breakthrough I have (if any....though I'm sure I'll have a few!).

It may sound crazy to some, but I honestly feel like all these years of not being able to say "no" to people, suppressing my feelings and emotions, etc... it's all come to a head, and now my body's reaction is just a metaphor for what's going on emotionally/spiritually/whatever-you-want-to-call-it.

I love sharing my struggles, my triumphs, my fears, my joys... everything. If anyone has any questions, feel free to ask away! :)

~ Kate
The following user(s) said Thank You: Nitin, bobgeorge

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No drugs for 4 years: my story / encouragement 8 years 7 months ago #41115

  • GhostRider
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I do believe that both emotional and physical stress plays a huge part in our overall well being, whatever condition you may have.

I know that when I am under a prolong period of major stress (months) that my platelets are effected.

I was diagnosed with ITP back when I was 17 after knee surgery. ITP played no role in my life until I was 32 (now 34).

I had been suffering with a LTRI for nearly 6 months as my GP refused to admit that my cough was due to anything other than a virus and would not send me for any tests or prescribe me any antibiotics.

In that time period I had lost 3 inches of my waistline because I was coughing so hard I couldn't keep anything in my stomach for long.

Also during this six months period my wife was going though a very difficult pregnancy which resulted in her have to be induced 2 weeks early, having a emergency caesarean followed by an emergency hysterectomy, She was in surgery for 6 hours and had lost 8 units of blood, to say it was the the scariest moment of my life is an understatement.

I do not find it a coincident that before this 6 months I had no issues with my ITP at all and then all of a sudden my count is at 3 and I am taking 85mg of Pred and a 5 days course of IVIG.

I was also diagnosed with bored line CVID.

I was surprised by this because other then 1 case of shingles at 15 (mild case) bronchitis when I was 19 and the occasional dodgy stomach (most likely caused by day after kebabs and cold pizza :laugh: ) I rarely was ever sick.

So now after 6 of the most stressful period of my life as well as having to deal with doctors who refused to treat my LTRI I am now classed as having CVID.

My count crashed again recently (April) to 5 and I have been taking 80mg of Preds for the last 2 weeks. Last count was at 19 and going in today so fingers crossed.

Apparently my CVID count is also down however I refuse to have any treatment because I am convinced that both drops are due to stress again.

Back in November I was suffering with terrible pains in my chest, upper and lower back, shoulders and arms.

I called it my Magic ball of pain as it would move about my upper body and hit me at random times and at different strengths.

I went to my GP in November and she said "It could be shingles".. I know

This started a procession of my going back every couple of weeks and being given a different diagnose each time.

I had been told that it could be shingles, kidney infection, nothing they could do until the pain got worse, pulled muscle, IBS and fibromyalgia.

In between of this the pain got so bad at one point that I actually believed I was having a heart attack and had to go to A&E.

As time went one I was becoming more and more convinced that I had something very serious and my doctors were doing nothing to elevate that worry.

Luckily I was due for a Physio appointment for my knee and she took one look at me and immediately pointed at my back.

1 very quick examination later and she had diagnosed a thoracic problem. 10 minutes later and most of the pain had gone. I will need some more treatment on my back but all that worry was for nothing.

Unfortunately the stress had already done its damage.

So yes, I do believe there at times were maybe saying no whilst you have no symptoms for a short period of time is of more benefit then taking treatment.

On both occasions where my count has gone below 10 I have had no bleeding, only a small amount of Petechiae. The bruising was more severe the first time round however ironically I looked a hell of a lot worse after the doctors and nurses got there hands on me.

Sometimes it can be very hard to say no if your Hemo is the kind of person who just keeps telling you that below 10 your head is going to explode due to all the haemorrhaging that about to happen at any minute.

Looking back at both of these occasions has left me saying that next time my count does drop again, unless I am having symptoms like bleeding or serious bruising, Petechiae etc that I will wait a little while before having any treatment to give my body a chance to recover itself.
The following user(s) said Thank You: bobgeorge

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No drugs for 4 years: my story / encouragement 8 years 5 months ago #41890

  • daffymable
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Hi Kate,

Very encouraging. I am also going through stress and some rejections. I did not believe that my platelet would come low below 5000 within a week of my rejection and stress. Went for steroids and got stabilize within a week. This happened feb 2014. And now the platelets again started to drop down from 2Lakh to 1Lakh. The doc was asking me to remove the spleen. But i am not going to do that.

Hoping to cope up with this problem soon and get well soon.


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No drugs for 4 years: my story / encouragement 8 years 3 months ago #43217

  • pattilustig
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Thanks for sharing your story. I have been at 5,000 or below since December of 2012. I have tried Homeopathy with no results. I just moved to Florida and found an MD who does natural medicine. He works with Oxygenation and other therapies I haven't tried before and he thinks I have a virus associated with Chronic Fatigue and Fibromyalgia. The treatments he encourages are very expensive so I am trying to decided whether to take the risk. I am curious what type of emotional work you are doing and with whom? I would like to try that method.

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No drugs for 4 years: my story / encouragement 8 years 3 months ago #43230

  • John
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Hi Kate et al.,

Thanks for sharing. I have been there too and battled through with very low platelet counts. It takes some nerve to endure the low counts and go against the medical advice for second/third line treatments.

My only comment is that for homeopathy to work, you need to find the right personal or "constitutional" remedy. In my case I take kalium bichromicum and it works like a charm. The right remedy can be very powerful and it blows my mind to think how it has reset my body and well being.

For homeopathy to help with your ITP, you need to find a very experienced practitioner to help you find the remedy that is unique to you (I don't suggest you try my personal remedy without consultation). GL.



PS I am glad to see members talking about the effect of prolonged stress as a factor for ITP. I've talked about this since I started posting at PDSA forums. Prolonged stress or chronic stress promotes the body to produce cortisol, which can cause major health problems if not mitigated.

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