Hello all i hope you are all doing well
Since my diagnosis of fnhl in 2016 on w & w i have had chest infection after
chest infection
One doctor says its copd another says its the nhl
I am at my wits end with it all as im losing so many days being ill
Also should i be taking vitamin D
Im confused as to whats right or wrong & get very upset & depressed
Would appreciate your comments
Many thanks
A lot of people do have low Vit D levels. Also were you a smoker and where are your nodules?
I feel your pain. Before and after my diagnosis I've gone from one infection to another. I'm being proactive now so I take vitamin D (which I believe is giving me more energy) wheatgrass, turmeric and circuit, plus I try and eat green leafy veg or salad every day. Eating a healthy diet is also useful. When I feel a bug coming on I take apple cider vinegar ( usually add it to hot lemon and honey). It helps plus it's more natural than antibiotics,which I try and avoid as much as I can.
Circumin not circuit.... 🙄
Thank you that is very useful
I have heard apple cider vinegar is good for all sorts but was never sure how to take it
I mix lemon juice, honeyand apple cider vinegar ( about a teaspoon) with hot water ❤
Chronic infections are one symptom of low immunoglobulins. Please talk with your doctor about getting an immunoglobulin blood test.
Evidence that Vitamin D status is crucial for our health and immunity is getting stronger all the time.The only way to find out if you need to supplement is to have a blood test to check your levels. They don't do a routine vit D test where I live, so I had to get a private test and my levels came back at 32ng per ml which is low normal. I now take vitamin D and will get tested again after 3 months to make sure I'm taking the right amount.
If your doctor will test you, that would be much better as they can prescribe a large loading dose if you're deficient and when that's done you can go on a maintenance dose to keep healthy levels. It's important to mention Vitamin D to your oncologist or haemotologist as they used to be cautious about advising it to lymphoma patients but recent studies seem to have somewhat allayed that fear.
If you'd like to read up a bit on vitamin D - this is a good website: vitamindcouncil.org/about-v...
Don't worry about being confused - we're all just finding our way through this condition - and even the doctors can't know everything. They would have to do a scan to know for definite whether there are nodes up in your lungs. Hope this is of some help.
Yes i have asked my oncologist about vit D but he simply ignored my question!
I will speak to my own doctor when i get blood tests on Monday
Thankyou
After diagnosis and treatment I heard coworkers talk about getting vit. D for their SAD. (Seasonal affective disorder). I got checked and was way below normal... I was put on 50,000 a week. Small green pill. Plus multi vitamin with d. After 3 or 4 years I thought maybe I had enough. I was tested and was in the range range. I was told I should take 1,000 more per day. I got afib within a week and soon after went off the extra 1,000. My blood test at my next appt. Showed high calcium. I think afib is associated with high calcium? My new doctor took me off d for 6 weeks to see how I do. I feel like something is wrong, less energy after 6 weeks. Appt. Next week. I take essiac/ezzaec (herbal tea medicine) every day to help my immune system. I used to get sick often without and when I would run out. I don't run out any more. I did get pneumonia with my cousin waiting for lung transplant with pneumonia. Should have taken extra during those visit days or not visit.
Dlindquist - How long were you on the 50,000 ius a week? It does seem like an awful lot if taken for a long time. I take 3,000 iu's a day since (February) which is 21,000 a week but if my results show that I'm up around 50ng per ml, I will drop down to a maintenance dose of 2,000 ius a day. I'll post here when I've had the test.
Diagnosis results Splenic Marginal Zone Lymphoma. Bone marrow shows mutation MYD88 L265p
What does this results mean? Do I have cancer or is there any chance of getting it in future? 
Really bad cough