Is it really ITP?

I was diagnosed in Aug. 2014 with ITP at the age of 38. I feel great. I am having a hard time being convinced it is the correct diagnosis. During a routine blood test, my platelets were at 48. I was heading out of the country and didn't get the results until 3 weeks later. By then, my platelets were at 39. I was told to go to the hospital where they dropped to 25. I was put on a high does of Predisone, and they improved, hitting 170. They even stayed there while I weened my way off. A month after being off, I am down to 56 and dropping fast.

So here is my issue...I don't bleed and only had some slight bruising in June. I always bruise in the summer. I didn't think anything of it.

7 years ago, I was diagnosed with Fibromylsia after months of exhaustion and brain fog. I went on Savella and was symptom free after a year. A year after that, I got off the meds and haven't had any signs of it since.

5 years before that, my lymphnodes swelled for no reason, and I went to doctors for 9 months. Finally they decided it may be lymphoma and took out one to biopsy. Nothing was found and a week later my body went back to normal. (At the age of 7, the same thing happened and biopsy showed nothing.)

For 11 years (from 21-31), I had low IGA levels. Then, they went back into the normal range. Now, my IGA and IGM levels are low, but not terribly. They are calling it Common Variable...even though I have no other symptoms.

At some points, I was also told I had Epstein bar, mono, shingles, measles.

At 22, I had a skin biopsy done showing I have Morphea, and it's the only condition that I truly believe is 100% correct. It is an autoimmune disease.

So that is my history. Tons of weird health events. Is it possible that my body is just acting up again and will go back to normal like it did in the past? Is it possible they are missing some other disease? I think it's strange that I keep going through this and I have even been to an infectious disease specialist and checked for a number of issues, including lyme, lupus, cancer, hiv, etc. Has anyone else experienced multiple health issues like me?

Please let me know what you think. The doctor wants to do a bone marrow biopsy next. I feel like it's a waste of my time.

Alec:

I will tell you exactly what I think, and honestly.

First of all, how you feel is the most important thing. If you feel good, don't worry about another diagnosis. Most other illnesses have symptoms of some sort and lacking that, you probably won't get a diagnosis. Your doctors could do tests until the end of time but if nothing is showing up and you feel good, what are you worrying about? Most of the time, ITP is just ITP.

Now, I will tell you a bit of my story. I was diagnosed with ITP in 1998. I dealt with up and down counts for about 7 years, then went into remission. Right about the time that happened, I began to get a lot of weird symptoms. Feeling flu-like, achy, fevers, fatigue, muscle pain, etc. I saw a Rheumatologist and after some tests, only had an elevated ANA and elevated C3 and C4. I was monitored for a year and a half, then began to have more symptoms (painful, swollen joints, parenthesis and neuropathy) and elevated labs. I ended up with a Lupus diagnosis. ITP can sometimes be the first symptom of Lupus, but it took about 8 years before I was actually diagnosed with it. It can develop slowly.

It's possible that you have some odd autoimmune things going on, but unless you feel bad, I wouldn't worry about it. If something is wrong, it will hit you and you'll know it. Lacking physical symptoms, it's difficult to get any diagnosis. I was fine for many years after the ITP diagnosis (except for the treatments and counts) but I sure knew it when something was really wrong.

Anything is possible in your future, in anyone's future, but there is no point in spending time worrying about it. I sure didn't, not until I had to.

One other thing...Most people (and doctors) don't start treatment until a patient hits 20k or 30k unless they have bleeding symptoms. The hospital is also not necessary unless there is bleeding, no matter what the count. I think you might want to get a second opinion with that Hemo.

I will add that the bone marrow biopsy may not be needed either, given your age. In people over 60, it's needed to rule out leukemias and help confirm ITP.
But for asymptomatic people in your age range, it's not necessary.

Hi,

Low IGs often cause lymphadenopathy and also something like 25% of people with low IGs have an autoimmune disorder, most common of which is ITP. So you probably do have ITP and it is no bad thing that you know that steroids can higher your count in an emergency.

Have you been seen by a clinical immunologist? They would be able to look at the subsections of IGs, IgG1, 2, 3 and 4 as well as M and A and also look at the Specific Antibody levels to see what is really happening. It's a good idea to know because if the ITP ever does need treating, it's good to know what you want to use and don't want to use.

Hi, your story sounds similar to people in the lyme groups that I'm in who were born with lyme disease. It can be passed congenitally in utero.

I think modern medicine has a hard time making sense of the fact that our bodies host a variety of bacteria. Our digestive system has bacteria that helps us digest food. The concept of probiotics seems to be understood and appreciated. It doesn't seem to be accepted yet medically that we can also host bacteria that can be problematic and they can cause disease. Some people think fibromyalgia, als, autoimmune diseases, parkinsons, alzheimers, etc. all can be caused by various bacterial infections. It doesn't seem like a huge stretch of the imagination to me. I don't know why invasive bacterial infections aren't given more consideration.

You might not necessarily have congenital Lyme. There are a lot of other infections people get along side lyme that cause similar problems. Babesia, Bartonella, ehrlichia, mycoplasma, etc. etc. It might be helpful to think in terms of possibly having an infection that is causing problems traveling throughout your body affecting multiple systems. That sounds anxiety provoking to say the least but if you just look at it from a medical perspective it may be helpful because it is thinking somewhat outside the box. And the box doesn't hold a lot of answers for people with hard to diagnose illnesses.

This book by Richard Horowitz called Why Can't I get Better approaches patients with Lyme as having a multi-systemic infectious disease. Often people have more than one infection with symptoms all over the board.

www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400

Below is a bunch of info that I give to people who think they may have Lyme disease. A good Lyme Dr. should be able to evaluate you for various infections. They're all hard to test for though. You may want to look in that direction and see if you find any more answers.

Also get a copy of your Lyme test. Not the Dr.'s office copy that doesn't have any info besides your negative result. Get your medical record copy and see if you have any bands positive for Lyme.

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Here are some resources for finding a local Lyme Literate MD.

Each state has a lyme yahoo group. Type Lyme and your state in the yahoo group search bar.
groups.yahoo.com/neo/dir/1600106012

These are two helpful organizations that will send you Dr.'s names in your area.
ilads.org/ilads_media/physician-referral/

tbdalliance.org/treatment/find-a-medical-professional

This is an active online Lyme discussion group. They have a special sections specifically for asking for Dr.'s contact info.

flash.lymenet.org/scripts/ultimatebb.cgi

www.igenex.com/Website/ Igenex. This lab specializes in testing for Lyme. The company will send you the test kit but you need a Dr. or chiropractor to order the test/blood draw. You just need to order these two tests. It's $200. 188 IgM Western Blot, 189 IgG Western Blot

With the average test that your Dr. runs you need five bands on a western blot lyme test to be considered positive according to CDC guidelines. They test you for like 13 different bands. Each band represents an antibody that your immune system produced to fight Lyme. They can't detect the Lyme bacteria in your blood so they look for signs that your body is fighting it.

People in the lyme community disagree entirely with the CDC criteria that you need to have five different types of antibodies fighting lyme in order to be considered positive and qualify for treatment. There's no scientific proof that people with that many antibodies are sick and people with less than that are not.

Given that the tests for lyme are not that accurate to begin with Dr.'s are supposed to diagnose and treat you based more on symptoms anyway. That's what a clinical diagnosis is.

To your original question....it sure sounds like ITP, and it might be. That doesn't mean you have to treat it. If you feel good, and don't have bleeding symptoms, then just let it be and watch.

I've no doubt I have ITP. My platelet counts have been mostly between 40-60 for the past 2 years. A few weeks ago they were down to 29, so I will be watching a little closer and may consider treatment (my hematologist believes that below 30K treatment should be considered). It won't be prednisone, though....I hate that stuff!


EDIT: Since you respond to prednisone, I don't think a bone marrow biopsy is indicated. I would get a second opinion on that.