Hi was just wondering if anyone had any advice - I have for the last 2 years have had recurrent chest/ear infections always needs treatment with antibiotics. When I discussed with the haematologists they have said its unlikely to be down to ET worsening as my platelets remain the same. The platelets are better as was previously on Interferon which reduced my platelets to more normal levels around 600 mark but on the slow increase (was previously 1500). My bone marrow biopsy showed reticulin grade 1-2. My symptoms have worsened but no-one wants to listen.
Are we more likely to get infections or shall I look at another route because I cannot continue being so unwell last chest infection took 2-3 months to recover. This one doesn't seem to want to go.....
Any advice information will be greatly received
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cheeks1
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Personally, I would say that you are caught in a vicious circle as antibiotics will strip your gut which is where a lot of your immunity comes from - they call our gut our second brain so in turn you are weakening your immune system. For me as well as following a plant based lifestyle I make sure I stock up on supplements during the cold and flu season and I swear by organic black elderberry if I feel run down or I may get something coming. I work with homeopaths and kinesiologists to ensure my gut health is on top form. Some people may suggest ensuring you take a probiotic after a course of antibiotics. Equally if you keep getting these, are they all bacterial? Antibiotics don't help with any viruses and in turn will just disrupt your natural immune system. I personally would look at increasing your immune boosting foods and good quality supplements, think zinc and vitamin c, get some black elderberry... and if you get a repeat try to avoid antibiotics as they will not work when you need them most. Also if you consume dairy this is mucus causing and can cause a whole host of health issues.
Thanks I already use probiotic and vitamin supplements and don't eat dairy as a am intolerant to it. Unfortunately I was almost admitted to hospital so needed antibiotics and completely lost my hearing for 3 months at the time they were all bacterial infection started off viral (swab/sputum was taken in the end to ensure I was on the correct antibiotics). I hate taking them and generally avoid but have been unfortunate recently. Thanks for the advice
Are you a candidate for IV IG (intravenous gamma globulin). My Myelofibrosis wore out my immune system so an immunologist tested my immune system and now I get IV IG every three weeks to help me fight infections
What are your white blood cells like? This can sometimes give an idea of what type of infection you have or low white cell not been able to fight infections. Your haematologist should be taking you seriously, any chance of a second opinion?
My white blood cells have always been low to normal, with this infection the WBC are now high. I don't think they want to take me seriously. I just actually want to feel better. He wants me to have a referral to immunologists now.
I get really bad coughs , three times last year and another one since April and they last forever . I have notice that started getting them more since my blood counts changed
Hi I have been on hydroxycarbamide for my ET I’ve had a splenectomy in 2014 I’m on V K penicillin daily 1000 mg but recently got a chest infection in clinic at the Christie hospital guy next to me no mask coughing every where I’ve had doxycycline one week then Amoxicillin one week I’m now on Co Amoxclav and I’m still not clear I’ve emailed my professor at Christies to ask if he wants me to go back in or see my GP this is my first infection since my diagnosis I take supplements and pro biotics daily
Have they checked your white blood cell count, mine is consistently below the norm less than 3, I too find infections take longer to heal although my heam nurse says she is not concerned by this.
Yes it is normally low along with my lymphocytes. When I get a infection the white blood cell count climbs up. They seem not to worry but have had ET for 10 years now and the last 2 years have been awful with recurrent infections.
This last winter I’ve had many bacterial infection. I’ve seen my haemo who doesn’t want me on antibiotics but my gp needs me on antibiotics. I see my haemo next month. I’ll be asking him what I do about bacterial infections.
Hi Cheeks! As my disease was moving along I was getting more and more chest infections. Simple colds would not go away without antibiotics. My body and immune system were failing. 5 x antibiotics in less than 2 years. I was diagnosed at 909.000. I immediately went on an autoimmune diet and have hat just one tiny cold in 19months that went away in 36 hours with a bit of vit C. I was lucky to be able to choose my treatment and I stayed away from interferon, because it gets the immune system. Since I have Hashimoto, theres no question. I take anagrelid.
It sounds like your immune system is very week. Find a goid functional doctor and dietician that will lead you in helping your immune system recover, but do not BOOST the IS! Reset it. The change in my health is huge.
If your doctor doesn’t listen and you’re losing trust, change to one who does. I changed 4 in 16 months and found the one who I trust and I feel safe.
I hope to have helped with some new idea. Cheers Anag
Hello I have just read your post, I would like to share with you my experiences. I have ET and it is treated with Hydroxycarbamide, I work part time in a school, if there are colds, tummy bugs sore throats etc going around I always seem to come down with the illness. I have found it seems to last longer when I have an illness, the haematologist says my white blood count is OK yet I seem to be susceptible to illness. Hope this has helped sharing this. I hope you feel better soon.
Hi, sorry to hear of your recurring illnesses. I'm wondering if it could be your ET medication weakening your immune system as if you are on Hydroxycarbamide, as I am, the leaflet with the Hydroxy states that we should avoid contact with people with infections, as it does have an affect on the immune system. How we are supposed to avoid all the general public, I really don't know as who knows what bugs are floating around. There are some good suggestions in the other posts here,so really hope you feel healthy again soon. Best wishes,Fran
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