INFECTIONS:

[5bella5]

Hello everybody:

Would like to know if infections can cause platelets to go down ? If so, are specific infections worse than others in regards to platelet count?

Thank you all for your feedback.

[Lin6]

Hi do you have ITP

Lin

[5bella5 in reply to Lin6]

I've had ITP for about 6 years.

[Lin6 in reply to 5bella5]

O I should be asking you questions, I'm very new too this as only been diagnosed passed few wks.

My consultant only told me not to be near anyone with measles/chickenpox if that helps?

Lin

[5bella5 in reply to Lin6]

Thanks for your reply. I live in Los Angeles, California. Contrary to what you may have heard in the news, there is nobody here who has Chicken Pox or Measles. Children are vaccinated for that in the US. I'm supposed to stay away from people who have Flu, Colds etc., I suggest that you read some of the earlier blogs. There's a great deal of information that could possibly help you. Which country do you live in?

[Lin6 in reply to 5bella5]

I live in (Newcastle) UK.

We seem to have very good ITP consultants here, my next appt is tomorrow am. Yeah forgot he also warned me about the common bugs too.

How low has your platelets been??

[Hblair in reply to 5bella5]

I live in la. Who do you see as your doctor ?

[5bella5 in reply to Hblair]

Hi! I was very upset with my previous Physican, who is a nice man, is very highly respected etc., etc,. But not for me. So after a few months of being unhappy, I found a Hematologist/

Oncologist who is wonderful and I love her. Her name is:

Dr. Alexandra Drakaki, she's located at both

UCLA and Santa Monica office. Good luck.

[Hblair in reply to 5bella5]

I may have to give her a call.

[5bella5 in reply to Hblair]

You won't be sorry that you did !

[5bella5]

Great! Here one sees a Hematologist/Oncologist. Level of expertise,of course, depends on a variety of things. After my experience (which is way too lengthy to go into here) with my first Hematologist, I became very ill and chose to see another Physican. Best thing I ever did. She doesn't mind if her patients take herbs etc., as long as we let her know about it. I've just started taking a Chinese Herbal preparation. Keeping my fingers crossed that it works. So far I've tried two other Herbal meds, neither one worked for me, but my doctor says some of her other patients have had wonderful results & platelets soaring to above 300,000!!

Take care, keep in touch and good luck tomorrow.

P.S. Wanted to add that praying seems to make me calmer and feel more positive. I strongly recommend it to everyone!!!!

[5bella5 in reply to 5bella5]

Forgot to answer your question as to my platelet count. On the high end, without treatment it's been between 50,000-80,000. Low end (after reaction to meds),

25,000 -50,00 0. It varies. Goes up and down. Based on the Italian treatment protocol, I've put myself on a Gluten Free diet. Hope to stop dairy soon. I usually do not consume sugar anyway, otherwise, I would have to give that up as well. I do drink one glass of wine with my dinner each day and that is with my doctors blessings. Take care and Good Luck!!!!

[Lin6 in reply to 5bella5]

Hi 5bella5

my appt went so much better than hoped, my platelets have gone from 7 to 21 up to 141 now 😃 taking the Dexamethasone for 4 days but couldn't repeat it as found it too much so was given 80mgs prednisone daily for passed 2wks must have worked, he has agreed to reduce them to 60mgs 2wks, 40mgs 3wks then another blood test. I was warned there was a 50/50 chance they will drop but keep telling myself positive thinking. Tho I am going to try your idea of gluten/dairy free diet. I will struggle with diary as I just love drinking skim milk!!!!! Strange I know!!

i did discuss with him but as I've read they just don't seem to believe in any other ideas than medication?? So right, lovely man but!!

Thank you for your help hope to keep in touch.

[5bella5 in reply to Lin6]

Congrats!!!! So happy to hear your news! Keep up the good work, and remember to google each and every medication you are given. I guess we have to do all the research to help ourselves.

Good luck.

[Lin6 in reply to 5bella5]

Thank you, yeah I had to ask about other meds that I'm on that I had looked into!!!!

Enjoy your wine & take care

[5bella5 in reply to Lin6]

Thanks, you too ! And Good Luck!

[tip-3 in reply to 5bella5]

congrat. to all and 5bella5 is so right when you say google everything as well as the medication ... someone told me I should not read so much; but I think it is important for all of us to educate ourselves and gain as much info and knowledge as we can so we better understand the illness and can take better charge of our bodies as well as make the appropriate decisions and ask the RIGHT QUESTIONS as we all do have a right as a person and patient to do same .... and if the doctors are not going to be forthright with us and explain it fully so we have a better understanding; then by all means research and get all the information one can.

[kered]

I have had ITP for over 4 years and take the immunosuppressant mycophenolate morfetil ,MMF, to get my platelet numbers above 80. Because my immune system is suppressed I have been told to avoid situations where I could become infected and never have live vaccines. If you do not take immunosuppressants, or are elderly or have had a splenectomy, then you need not worry too much about opportunistic infections,just remember that avoidance is the best course of action. You do learn to live a relatively normal life with ITP ,but always treat it with respect. Unusually when I get a common cold my platelet count goes up. We all react differently.

[5bella5]

Thanks very much for your reply!

[sailor]

HI THERE. YES INFECTIONS CAN HAVE AN EFFECT ON YOUR COUNT. Having read your count, what are you worrying about. I have lived for 10+ years with a count of 10 and no medication.

As to splenectomy, Kered has made a mistake. The spleen acts to clean out infections and if you have a splenectomy, then you are MORE likely to have bad reactions to infections and that is why many physicians prescribe anti biotic to be taken daily.

Hope this is helpful.

[gr8tmumof2 in reply to sailor]

You are right sailor, my daughter had her spleen out a little over 3 years now and her Dr told me to even watch who she goes around and to make sure the school knows to call me if there is any cicken pox, upper respiratory infection or anything like pneumoni. She would need to be hospitalized for a while if she got any of those. Oh and before my daughter had her spleen out her counts did not stay over 10,000 for more then a day. Sooo many transfusions. And she took so many different paths before we decided to take her spleen. But in almost 3 years she has been sick once her tonsils have been swollen for a long time and has had tummy pain since about 2 mths after the surgery. If you take care of your self and keep hand sanitizer by your size at all times you should be good

[tennissenior]

I've asked my hematologist over and over why my platelets sometimes go way down. He has no answer. He never mentioned infection. He never told me what to eat to make them go up. He says it's the Lupus and the MDS. My bone marrow just slows down at times. Do you have MDS??? When they go below 50, I get severe headaches and just feel really lousy. If you find the answer - please please let me know! Thanks!

[5bella5 in reply to tennissenior]

Hello:

Sorry to hear about your difficulties. ITP is an Autoimmune illness, so one should follow the diet given for People who have any autoimmune issues. None of my Physican's were aware of Gluten being bad for ITP patients. I guess that we (the patients) have to do our own research and then present it to our Physican's. I read on this site a post from a person who said that she gave up,

Gluten, sugar & dairy. Hope it helps.

[tennissenior in reply to 5bella5]

Bella,

I also have MDS and on Coumadin, so my diet is limited because of medication. I eat dairy and little gluten, but nothing seems work. It's my bone marrow and the SLE. Food is not the answer. I refused steroids. Bottom line is -- there are no answers.

[5bella5 in reply to tennissenior]

Thats the downside, but on a positive side, people have mysteriously gone into remission. My personal feelings(I'm not a Physican) are that since my platelets went from "Normal" to "low" literally overnight, then it can go back to "Normal" again. In the mean time, I do a lot of research, pray a lot and try to stay as positive as possible. I think that the more I focus in my ITP the worse I feel. In closing, I would like to mention that the Master Herbalist I consulted, suggested that I ask my primary Physican to check my Thyroid regularly. Surprise!! It was l o w! Low Thyroids can slow us down and also make us feel sluggish and depressed!! So it's important to have it checked. And last but not least, for those of us who are currently on or have been on steroids, it is very important to get our eyes checked. Steroids can cause Cataracts and other eye problems.

Wishing everybody a beautiful week and much good health !!

[Lin6 in reply to 5bella5]

Yes I've noticed this passed wk my eyes are so tired and see loads of floaters,

[tennissenior]

I'm 71 - my chances of going into remission are slim and none. I've done the Dex; I've tried eating lots of protein, but I have so many issues that all I can do is fight to survive. I also am hypothyroid - on 125 mcg of Synthroid. That was my first "sign" of having an autoimmune condition. I'm struggling to be active and continue to try and play tennis 3-4 times a week. If anyone has any "uplifting remarks" now would be a good time. The last two days have not been good ones.....the good ones seem to be getting less and less.

[5bella5 in reply to tennissenior]

Believing in Miracles, large and small can uplift us. Also being grateful for everything we have, including each and everyday of life really helps. Take care , I'm holding you in good thoughts. God bless.

[bige54 in reply to tennissenior]

Who said that because you are 71 that you have little chance of remission? Nonsense. Age has nothing to do with it, your mindset however might. Take a look at me. While I am a bit younger than you (61), I have just been through some interesting times. I was diagnosed with Non--Hodgkin's Lymphoma almost 3 years ago. 4 months after that, I was in remission. Then, a few month later a regular checkup found that my platelets had plummeted to 2! After some tests, they diagnosed me with ITP. Well , it took a while, a couple of hospitalizations, and the removal of my spleen, but as of a few months ago I am in remission for that too, As of now I am not on any medications for cancer or ITP Never say never!!

[5bella5 in reply to bige54]

Congratulations! Wishing you the very best of everything! A positive attitude always helps!

[tennissenior in reply to bige54]

Honestly - my doctor. I was diagnosed in May 2011 - not long after I took a shingles shot. Maybe I was in remission for years but until I took the live virus - that's when all my problems began. I did ask my doctor how I would know if I were going into remission. He said the labs would be normal or close to normal. I really appreciate your support. It's a Catch-22. When one is diagnosed at a young age, their chances of remission are excellent. But..they are sick for many more years than I have been. The down side is the aging process wears the body down - do I am fighting many demons. I gave up hoping for a cure a long time ago. I asked my doctor about clinical trials and he said absolutely no. I asked about a bone marrow transplant (I have twin brothers) he said absolutely no. I was too old. So...its day by day. I also have the anticoagulant factor, thus, the Coumadin for life. Two years ago, my entire leg and one lung had blood clots. I survived that - barely. I can't eat the wonderful veggies I used to love. I am slim now and don't look 71 - but the worst part is - I don't look sick. No one sees my labs or can tell how I feel.

[scaryteacher in reply to tennissenior]

Why no veggies? I've had ITP for 20 years, and no-one has ever suggested that I change my diet.

[5bella5 in reply to scaryteacher]

The person who's veggies are restricted is because (as she mentioned), has OTHER health issues.

[tennissenior in reply to 5bella5]

Sheila -- Thanks! I have to take Coumadin, as I have the Lupus anticoagulant factor, and I've had DVT's twice. The last was 2012. My entire leg and the bottom of one lung had DVT's in them. I am afraid to "cheat" on the Coumadin diet, as I am thinking "Three strikes and you're out!." When you've gone thru the pain from hell from DVT's and can't walk for 7 weeks, you don't gamble on cheating on the Coumadin diet. No cruciferous veggies, only iceberg lettuce in salads. There are a few veggies which are allowed, but the selection is not great. The bottom line is it's the Lupus that causes all of the other issues. The ITP is related to MDS, a disease that affects the bone marrow, which makes platelets. It's very important to learn about the various issues that can arise when you have Lupus. It's a very misunderstood disease. The effects of the disease can affect every part of your body, organs, eyes, and even teeth! I've gone to the dentist several times complaining of a toothache. The Xrays show nothing. Lupus even affects your gums, and the inflammation can cause a toothache. I recommend each of you on this forum read up on all of this.....I've been doing that for 4 years now. If you are here - you need to know everything about it!

[scaryteacher in reply to 5bella5]

Pardon me for asking. As it hasn't been mentioned on this thread, there is no need to be snotty.

[5bella5 in reply to scaryteacher]

Hello scaryteach. Your perception of my reply Is inaccurate! I am not snotty AND I feel that your attack on me is beyond snotty. Before attacking people try to understand what somebody means. We are all trying to uplift each other, not to be brought down with acid posts like yours!

[scaryteacher in reply to 5bella5]

I don't think my perception is inaccurate at all, given the shouting in your response with the capital letters, which is considered to be rude, and the dig in parentheses that I hadn't trawled all the other threads to see what was wrong. If you can't explain why simply, then don't bother.

Speak for yourself about trying to be 'uplifting'; that is not the primary purpose of the forum, or hasn't been over the last few years, but to inform and give practical and concrete advice.

As for acid posts, I suggest you reread your original response to me and think, pot, kettle, black.

[emailkevin]

There are several articles and highly regarded studies that associate ITP with parasites, namely H. Plylori. I read a few articles and studies that associate ITP with H. Pylori. I got test for H. Pylori and was found positive. I am still in treatment now.

Here's a Google search

google.com/search?site=&sou...

Thanks

Kevin

[5bella5 in reply to emailkevin]

Hello:

Thank you so much for your post. I have been debating as to whether I should get tested for H. Pylori myself. Can you please tell me which type of test you were given and what the treatment is ?

P.S. Which country are you located in?

Thanks & good luck

[emailkevin in reply to 5bella5]

You just need to get a stool test for H. Pylori. You will never be able to afford or endure the many tests for all the different other parasites so don't waste time going theis route. Instead focus on riddening yourself all parasites in general by creating an environment in your digestive system which is not favorable to parasites with herbs and take plenty probiotics, as well as, eat as natural as you can. Beware that most strong antibiotics will lower platelets. Avoid them if possible.

I am in the US, Denver.

Regards

Kev

[5bella5 in reply to emailkevin]

Glad to hear you are in the US. Sorry to keep asking questions, how did you find out which herbs to take? Further more , H. Pylori is a Bacteria and the parasites are something else, so did you get tested for both ? And have your platelets increased? How long is the treatment ? Recently I had an ear infection and my doctor prescribed antibiotics that didn't lower platelets, or so he said. And last but not least, which type of doctor (specialty) did you have to see for the test?

Thank you so much for taking the time to answer my questions, I really appreciate it.

Kind regards.

[emailkevin]

I found out about the herbs to take in 3 ways: chinese doctor, naturopath, and my own research.

Check the Platelet Disorder website for info on alternative treatments and for platelet lowering meds. They list specific antibiotics to avoid. Drs don't always worry about this especially if you are taking treatment to increase platelets at the same time.

pdsa.org/treatments/complem...

pdsa.org/treatments/convent...

I have been doing alternative treatments for years. They take much longer to work, but are less damaging. Also, their use requires lifestyle changes.

I don't get blood work as often so I don't know my progress. I feel great, though, and do not display ITP symptoms. Being too attentive and worried about platelets in itself can act to lower them. Check inti Nocebol Effect.

en.m.wikipedia.org/wiki/Nocebo

Regards,

Kevi

[5bella5 in reply to emailkevin]

Thanks very much for your reply, it really helped. Good luck.

[emailkevin in reply to 5bella5]

No problem. I love sharing my experience and hearing of other's.

Warm Regards,

Kev