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Worried 2 years 2 months ago #58007

  • Maronese
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Hi Everyone,
I am a new member and would appreciate any suggestions on how to deal with my anxiety regarding ITP. I don't know if all of you felt the same way I am feeling when you were first diagnosed with ITP. Here's my story. I am a 55 year old male who has been dealing with psoriatic arthritis, palmoplanter pustilius psoriasis and other health problems which would be to long to explain. Given my health conditions and dealing with constant pain on a daily basis for the last 5 years, I am being treated with high doses of pain medication , cortosteriod creams and recently put on Humira. I had to stop the Humira after 4 months of treatment given that my Dermatologist/Rhumetologist noticed that my blood work showed a continued drop in my platelets. They went from 149 to 106 in less than one month. My belief is that my next blood work will show another drop. I say this partially because I am a worry wart and have always been a negative thinker. Surprisingly, I am a professional that was responsible for a successful multi million dollar corporation with 2200 employee reports which totally defys logic in how I think now that I had to retire due to the relentless pain I have dealt with. I read my rhumetologist report which clearly stated my thrombocytopenia may be related to the Humira and if my platelet level (106,000) doesn't improve while off the Humira, I will need a work up by an internist/hematologist. Sorry for making this long, so I will cut it short. Symptoms: no bruising outside of my feet which looks like bruising, but more like changes in skin pigmentation due to years of use of steroid creams. I am starting to see the little red dots on my legs, but they look like acne given that they have a white head and I can scratch them off. I have wounds that take forever to heal. I guess the symptoms of ITP are moderate at this time however ,I am afraid and convinced that a work up will show LEUKEMIA. I have to believe that many ITP sufferers on this great forum may have felt the same way I do. I'm curious to know what you all did to deal with how I am feeling. I feel paralyzed and can't function at all because, my mind is constantly thinking about the disease (ITP) and what it can lead to as I noted above. Thank You and I would love to hear any suggestions that may help me unparalyze myself and sorry fot making this so long.

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Worried 2 years 2 months ago #58013

  • wquine
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Anxiety has plagued me all my life so I can relate and I thought I was a goner at first too. But your counts are actually fine and if its the Humira causing a drop then that's even more reason to know its not your body. You really don't even need to think about ITP until 40 or below. What I will say is avoid steroids and be willing to question/research yourself. For me taking the power into my own hands is the only thing that freed me from the bonds of anxiety.
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Worried 2 years 2 months ago #58015

  • Sandi
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Your counts are actually quite good. Anything over 100k is considered to be normal. There is no reason to believe that your counts will continue to drop. They could just as well go right back up. Platelet counts fluctuate, even in healthy people. Medications can sometimes bring counts down. As long as they don't go below a safe level of 30k, treatment may never be needed. I certainly would not say that you have ITP quite yet. With counts as high as yours, I wouldn't expect to see any symptoms such as bruising, bleeding or petechiae. That doesn't happen for most unless they get below 20k.

I know that I can't say much to help you stop worrying, but really, at this point, there isn't much to worry about. Time will tell.

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Worried 2 years 2 months ago #58019

  • D.Mann
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50 year old mostly healthy male here. I was diagnosed in October last year. My counts have fluctuated from >100 to single digits several times since. For me I do not really notice major symptoms until I am in the low teens. A count of 20 and I really don't even bruise much. You will just have to learn the signals your body is giving you for that. After dealing with steroids and the side effects that go with them I will not worry about it if I can maintain 50 any more. I did Rituxan in December and if it is enough to get 50 I am done with all the other stuff. I know when I am low and need some extra boost.
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Worried 2 years 2 months ago #58023

  • Maronese
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Thanks wequine and Sandy.
I am very worried given what my hands and feet look like presently. They say it's the Palmaplanter psoriasis which I have a hard time believing. You would understand if you saw them.
I know the anxiety will never go away, but I would only wish that it could be managed better however, it's family genetics.. As far as the count goes ,the rhumetologist rounded it to 100,000 and actually noted possibly ITP. Bloodwork every two weeks and if it drops below 100,000 a full work up by an internist/hematologist.
Can someone please tell me what to look for in my bloodwork (outside of platelet count 150,000 minimum) results that would also point toward ITP.
What do hematologist look for and conclude an ITP diagnoses?
What I fear the most after reading many of the threads is when your platelet levels drop below serious levels, treatments to bring them back up is through medications which in some cases have serious side effects. Once the levels are stabilized then the process of weaning them off slowly begins . This too causes some side effects? Please correct me if I'm wrong. Since I have Ankalosing Spondilitis ,which is a degenerative spinal disease and causes severe daily pain and requires significant pain medication. The pain medication is opiate based which causes withdrawal symptoms when you start coming off. Keep in mind that the disease is chronic in nature. This means that you don't come off it totally ,because of the pain. This leads me to believe that this medication also contains acetaminophen and taken in high doses could also lead to ITP (my opinion). The question I'm hoping someone can answer is if your weaning off the ITP medication can you continue to take your pain medication for AS or do you have to also wean off. If you have to wean off both, this would be virtually impossible, so what would the work around plan be if there is one.

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Worried 2 years 2 months ago #58025

  • Sandi
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You are putting the cart before the horse. One day at a time, okay? I've had ITP which has been in remission for the past 11 years. Before the remission, I struggled with up and down counts for 8 years. I have problems similar to yours in that I have Lupus and degenerative disk disease. I've had surgery for stenosis twice and am probably looking at another surgery soon. I understand chronic pain...been living with that for 12 years and I also take opiate pain meds.

Although I would not consider my struggle with ITP to have been easy in any way, it was not nearly as debilitating and painful as the problems that I have now. If ITP were to become a problem again, I know I could handle it. I guess what I'm saying is that you are already going through something worse, so try not to see ITP as a horrible thing to deal with. Most of the time, it can be managed and sounds scarier than it is. I've lived through counts below 5k many times and life didn't stop at all. Most people consider ITP to just be a pain in the butt, but it can take time to get to that point. The meds are not fun, but you are already using immunosuppressants. The meds for ITP are no worse and some are even the same.

ITP does not normally need a work-up. There are no special tests to diagnose it; most doctors can tell by the blood smear. A bone marrow biopsy is recommended for those over 60, but some doctors perform them on younger patients anyway. Some doctors will do other tests such as thyroid, etc....but there really isn't anything that is necessary other than a count consistently below 100k. I know that the reference ranges on labs indicate that anything below 150k is abnormal, but the criteria for ITP has been changed to under 100k.

I don't think you need to worry about tapering your pain meds just yet. When a person is struggling with more than one health problem, juggling can be difficult, but most of the time it can be done.
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Worried 2 years 2 months ago #58027

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Thanks Sandi- feeling better every time you show me some light. Curious, when did the criteria for ITP change to under 100k

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Worried 2 years 2 months ago #58029

  • Sandi
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The criteria changed a few years ago. Here is an international consensus from 2010 and I think it was around that time. This was written by THE top ITP experts.

Primary immune thrombocytopenia (ITP) is an acquired immune-mediated disorder characterized by isolated thrombocytopenia, defined as a peripheral blood platelet count less than 100 × 109/L, and the absence of any obvious initiating and/or underlying cause of the thrombocytopenia.
www.bloodjournal.org/content/115/2/168.full?sso-checked=true

The entire article is good and may give you some insight and comfort. Many doctors are not aware of the change in criteria; probably not a Rheumatologist, and there are even many Hemo's who are not aware. If you get caught up in the ITP world, I will tell you right now that there are some who know their stuff if they keep up, and there are some who are so old-school that they have no idea what new treatments are out there and are not up to date on any new info.

This is a very good video to watch. The lecture was given by, in my opinion, the world's leading ITP expert. He is from the UK and has since retired which is such a shame, although I'm sure he is enjoying it.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Please feel free to ask any questions that you might have, okay?

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Worried 2 years 2 months ago #58030

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Great Sandi, I don't know if you wish to disclose where you are from as I am from Canada and our health system is different than other countries such as the US. Thanks again. Maronese

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Worried 2 years 2 months ago #58034

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Hi, Maronese! I'm from Canada too. We have a few Canadians on here. Where are you from?

I was diagnosed in 2004 and have been in remission since 2011. I will admit, I never really took my ITP seriously.
It was just something I had to deal with. I will say dealing with it does get easier. There is a fountain of information on here and lots of experienced people.

Welcome to the group!

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Worried 2 years 2 months ago #58035

  • Sandi
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Maronese - I live in the US. The payment for treatments are different, but the treatments are pretty much the same in the US and Canada.

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Worried 2 years 2 months ago #58036

  • Maronese
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Hi CindyL
Thanks for reaching out. I'm from Toronto. Nice to know I have neighbors. I should also thank Sandi who was one of the first to reach out and settle me down. I am still having a hard time settling down given that I still don't know if it's ITP or something worse. To add ,I noticed this morning that it looks like I have the red dots (peeteechi? I still can't spell it, forgive me). I spoke to my Dermatologist who told me to go to my GP but I can use the cream they gave me when I last saw him for a rash on my chest at the time. I have an appointment with a internist/Hematologist at the end of the month. I'm waiting for my GP to call as I left a message with her today. I don't know about yous but, with all of the ailments I have all I have been doing is spending my days in Doctors offices and now this crept up on me. No disrespect to any of you, especially Sandi. Sorry Cindy, I don't know if you have any other health issues, but Sandi, I don't know about you however, I am totally exhausted these last few years spending my days in different Dr's. offices. If it not for my wife I probably would have said the heck with all these appts, so she literally had to drag me out. I know that you need lots of patience when you have all these issues but I'd be lieing if I said forget about this appt, forget about that appt. I think you get my drift? How do you change this attitude, which I know is poor. I guess if there was light at the end of the tunnel I would go freely and willing however, when you feel like the light at end of the tunnel is a freight train coming at you, you lose all motivation. I am trying to change my attitude thanks to my wife however, I don't know if you get what i'm saying. Maronese

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Worried 2 years 2 months ago #58039

  • Sandi
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If the spots that you have are truly petechiae, then a cream will not help. Petechiae are small broken blood vessels. If your counts are still around 100k, then I would doubt that you have petechiae. That is nearly a normal count.

I spent last week in doctors offices and having tests done, but I've been blowing most of it off lately. I've been busy dealing with my mom who has dementia and also in the middle of a divorce. My health has had to take a back seat for the past year. I used to have anxiety about it, but even that has been put on the back burner because I'm not sure which thing to be upset about the most. I've become numb, I guess. Yes, I get what you are saying. All I can tell you is one day at a time. That's all I do.

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Worried 2 years 2 months ago #58040

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I'm in NB. There is someone closer to you on here.
I have low thyroid, carry the BRCA gene, fibromyalgia and a couple plus a couple of other issues. Nothing I have to keep going to the doctor for. All I can say is try and stay calm and let us know how you make out with the hematolagist at the end of the month. Good luck!

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Worried 2 years 2 months ago #58046

  • Maronese
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Hey Sandi,
I agree with what you are saying about Petechiae however, I would guess my count has dropped below 100. I called my Dermatologist who is a very good Dr, however, this is where I get frustrated. I spoke to his nurse about the red dots and she goes back to when I went in for the rash I had on my chest that they diagnosed as acne and they gave me a cream that cleared it up. I told her today these look different, but she could not get me in to see him as he was leaving for holidays, but I should go to my GP and see what she says. Let's be honest how many GPS know the difference between Petechaie and a rash? I find that the more you bother them the less they treat you seriously. They go by their appointments you have with them and that's it. Meanwhile, we sit on pins and needles. This is where I find the pay for use health system works better for these kind of situations. Just a point I wanted to make.

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Worried 2 years 2 months ago #58051

  • Sandi
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The only way to know for sure is to get a CBC. A doctor should know the difference between petechiae and a rash though. Rashes can be raised and itchy; petechiae are flat and not itchy. I'm sure there are other things that can look like petechiae, such as cellulitis, and if it cannot be diagnosed a biopsy would be in order. Is it possible to just call your GP and ask for a script for a CBC?

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Worried 2 years 2 months ago #58052

  • Sandi
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Do you have any bruising or bleeding (gums, nose)?

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Worried 2 years 2 months ago #58058

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Thanks Sandi no bleeding gums or nose bleeds. If there bruising it would look like I may have bruising on my feet or the psoriasis that has been treated with topical steriod creams for years. You can see the plaque buildup which I will not take off given that it turns red after the plaque comes off and becomes firing red and burns like cracy. They did a complete CBC, and outside of my platelet level, she told me it came back normal. I went online and I was able to see the results. White and Red blood counts were normal. There were a couple that I can't recall that were a tick over normal, very minor however, when my first platelet count came back at 149 they paid no attention to it until this last lab work. This is when it came in at 106. I'm actually off to the drs.
Thanks

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Worried 2 years 2 months ago #58063

  • Sandi
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Let me know how it goes. Good luck!

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Worried 2 years 2 months ago #58066

  • Maronese
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Thanks for following up (what time are you on? I'm on EST)
GP says that it's not Petechiae however, the little wound that was a pimple which I squeezed and kept picking is a form of Petechiae??? It is taking forever to heal. My feet which looks like bruising, she said was from the psoriasis, the topical steroids I have been using ,and the swelling that came down. It changed my skin pigmentation. She said it wasn't bruising. Is bruising suppose to hurt with ITP? Any she gave me a blood requisition form for 4 weeks out. Maronese

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Worried 2 years 2 months ago #58069

  • Sandi
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Scratching the skin can cause petechiae even with normal counts, especially if the skin is thin.

Most people with ITP report that bruises do not hurt if they are spontaneous bruises. If they bump themselves, then yes, the bruises will hurt. When I had bruising from low counts, the bruises were nearly black in color, sometimes very dark purple.

I'm EST.
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Worried 2 years 2 months ago #58088

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Hi everyone, I guess when one has times on his hands there's lots of time to dwell. A couple of quick questions. 1. Petechaie, will usually clear up and then return when platletes are low? If you scratch Petechaie you will bleed if your plateletes are low enough? Scratching Petachaies will cause bleeding and/or possible infection? Also amount of bleeding will depend on how low platletes are? Are there any symptoms outside of their looks with Petechaie? Is medically induced ITP reversible by stopping the medication ie(years of strong pain medication). Low platelets are a first sign that there is something wront with your immune system? Any other information that will help ease the anxiety? Blood platelet count has now dropped to 84. Waiting now even more anxietly for Internist/hemotologist appt at end of month. Thanks Maronese

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Worried 2 years 2 months ago #58093

  • Sandi
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Petechiae can come and go depending on counts. Some people never have petechiae with low counts, and some get them with higher counts. You cannot depend on that to figure out what your counts might be. If you scratch petechiae, you might bleed. Or you might not. They are not itchy, so you shouldn't scratch it. If scratching does cause bleeding, it wouldn't be much since you're not opening up an artery or anything. Petechiae do not have any symptoms other than the red dots that you can see.

Drug-induced ITP does not always go away when the drug is stopped. No, I wouldn't say that low platelets are a first sign that something is wrong with the immune system. There are many things that can go wrong with the immune system and most of the time, ITP isn't even in the picture. It sounds like you already have an autoimmune disorder that appeared long before the ITP.

You're worrying about petechiae too much. Bleeding is the main thing to look out for...nose, gums, urine....and even that doesn't mean that anything serious is going to happen. 84k is still a very safe count.

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petechiae 2 years 2 months ago #58095

  • Maronese
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Sandi, thanks again! Your one tough cookie, able to always be the first to answer members questions and concerns with all the personal stuff you have going on in your life. God bless you and Good luck. Maronese.

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petechiae 2 years 2 months ago #58096

  • Sandi
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That's the good thing about the Internet though....you can get on and off when it's convenient. When I'm not in the mood, I do something else. Answering questions isn't hard, and I enjoy helping people when I can.

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Worried 2 years 1 month ago #58357

  • Maronese
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Hi Sandi and all,
I need some advice please. My Hemotologist confirmed that I have thrombocytolopenia over the phone. Very unprofessional I feel. My psoriasis has severely flared up on my feet and hands. My body is now showing breakout of spots all over, specifically on my feet and legs. The spots are hard to describe. My concern when I first joined this very helpful forum was petechaie and how everyone dealt with ITP. Well now I don't know if it's gone beyond petechaie. Some look like petechaie and some don't. Anytime I call one of my specialists to get some questions answered, if I get a call back it takes 3 to 4 days and then they push my question on to the next specialist and so on. In the end they make me see my Family GP. As Sandi has said my blood counts are not bad at all 149, 106 and then 137 after I went off the hmira. The 137 was the count when I did my CBC. The H pylori could not be done given they did not give me a special form and I could not have the ultrasounds done because I was feeling under the weather. My CBC came back normal outside of my platelets 137. Has anyone on this forum gone to a Homeopathic Dr? I know this is a very sensitive route to take however, I feel like I'm not getting answers. When I go for my appointments I leave confused.

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Worried 2 years 1 month ago #58358

  • Maronese
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Hi Sandi and all,
I need some advice please. My Hemotologist confirmed that I have thrombocytolopenia over the phone. Very unprofessional I feel. My psoriasis has severely flared up on my feet and hands. My body is now showing breakout of spots all over, specifically on my feet and legs. The spots are hard to describe. My concern when I first joined this very helpful forum was petechaie and how everyone dealt with ITP. Well now I don't know if it's gone beyond petechaie. Some look like petechaie and some don't. Anytime I call one of my specialists to get some questions answered, if I get a call back it takes 3 to 4 days and then they push my question on to the next specialist and so on. In the end they make me see my Family GP. As Sandi has said my blood counts are not bad at all 149, 106 and then 137 after I went off the hmira. The 137 was the count when I did my CBC. The H pylori could not be done given they did not give me a special form and I could not have the ultrasounds done because I was feeling under the weather. My CBC came back normal outside of my platelets 137. Has anyone on this forum gone to a Homeopathic Dr? I know this is a very sensitive route to take however, I feel like I'm not getting answers. When I go for my appointments I leave confused.

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Worried 2 years 1 month ago #58359

  • Maronese
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Sorry, just to add to the bottom of my message. I may be taking this to far but, I wonder sometimes do Dr's have preconceived notions when they see you take opiates for pain? As my GP said that some Specialist do look at that. If that's the case, I would like them to be me for a day and tell me how they like it. Thoughts from all please. Thanks Maronese

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Worried 2 years 1 month ago #58361

  • Sandi
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Maronese:

I don't think that you are being put off because you take opiates. I just think that there is some confusion about what is going on with your rash. I think your best bet would be to see a dermatologist and have it biopsied. It would be highly unlikely to be petechiae unless your counts have dropped significantly. If that were the case, you'd probably see bruising or have gum bleeds when you brush. I just think that the doctors that you've seen are not sure what it is and are passing you around. You can look up pictures of petechiae and see if that is comparable to what you have. Keep in mind, they are not raised, are never itchy and are never scaly....just flat, pin point red dots.

As for homeopathy, there are some posts in the Natural Section that you can look at. It is a controversial subject, but each person has to make their own decisions.

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Worried 2 years 1 month ago #58367

  • midwest6708
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I was seeing a homeopathic MD [licensed MD] who literally shrugged at my report of severe, spontaneous bruising and who told me my platelet count of 33 was "perfectly normal". I hate to think what a homeopath without a medical degree/license might have said.
My advice is to stick with mainstream medicine for now.
And for what it's worth, I wouldn't be giving counts like yours a second thought.

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