I'm recently diagnosed with CLL and have two children (ages 10 and 11) and one young adult (22) living at home with me and my partner. I'd be interested in any advice on how to stay healthy/minimize risk of infections.
Minimizing the risk of infections: I'm recently... - CLL Support
Lewisham, welcome and here is a ready-made Pinned Post in regard to self-care for you to peruse.
Thank you cllady and JigFetter for your quick responses and very useful information. Here is a very specific question: I know that my nearest and dearest should have the flu vac but my two youngest (ages 10 and 11) are needle phobic. They will have the nasal spray, but that is a live virus. How much precaution do you think I need to take; should I leave home for ten days?
I have not had the experience of living with one who has had the live flu vaccine/intranasal---so, I can't give first hand info.
The following site may help:
It suggests 7 days isolated---I would suggest you ask your Dr. because we are all different in our levels of immunity. Also, others who are in your situation will most likely come to answer your question.
If you don't get more responses say by tomorrow, it would help to post the specific question in another posting to catch the eye of others.
I hope you will find support, guidance and comfort here.
cllady01 has just pipped me to the post! There is indeed much guidance that is worth reading with care.
Much of the infection avoidance, in addition to vaccinations, is about understanding infection. Virus, bacteria, fungal... and how they are transmitted.
Keeping fit and eating well is essential. Both needs to be worked on. No diet cures CLL, a healthy diet will help us cope with CLL and treatments to come.
I am not sure which country you reside in. I know the UK system.
Do ask anything you need to. Someone on the Forum will have a view.
Routine flu shots and pneumococci and the new shingles vaccine for a start.
I assume Lewisham is in the UK ? ( that’s a London Borough ) and Shingrex is not given on the NHS and as far as I am aware still only available in one pharmacy, and expensive.
Lewisham I checked with my Consultant as to what vaccinations to have, sorry a long time ago. And every so often I get my GP to check they don’t need topping up.
Wishing you years without treatment 🙂
My family dr. stressed washing hands often and carrying a purse sized hand sanitizer with me.
I myself have small kids and also work as a teacher so I asked my doctor the same question and she told me it was fine and did not need any precautions - I was diagnosed recently like you. Having said that, she might not have given the same answer to someone else. If your numbers are generally good/within a normal range, it should be ok. If you do live in London, you might have been given a number for a specialist nurse - try to call them.
Hi. I have a busy class of 28 five year olds. In addition, 5 grandchildren. When originally diagnosed I thought I’d have to give up my job but my consultant said it was fine until my numbers declined. The thing about working with little people is that they’re over the contagious stage before you realise what they’ve got. For the last 4.5 years I’ve been next to chicken pox etc.... without knowing it. Also every year I’m exposed to a whole class of children who’ve had the nasal spray. I’m scrupulous at washing my hands and no longer volunteer to look at every child’s rash that comes my way but other than that it’s business as usual.
Of course, I don’t know your numbers and wouldn’t dream of giving you advice but that’s how it is for me. My main problems are fatigue and chest infections but these have nothing to do with school (well ok, maybe the fatigue!🤣)
Discuss with your doctor or specialist nurse.
Welcome to the forum!
The post started by JigFettler a few weeks ago gives a whole load of answers from folk on this site, about ways to minimise risk of infection. Well worth reading. healthunlocked.com/cllsuppo....
Re your specific question re the flu vaccine, it would make things much simpler if your children could be persuaded to have the injected non- live vaccine rather than live nasal spray. (Assuming that there is a children's version of the non-live version). "NOTE that children who are vaccinated are given ‘live’ attenuated virus via a nasal spray and these children shed the virus for a few days afterwards, perhaps up to a week. Public Health England have stated that this virus is less able to spread from person to person and is shed at levels unlikely to cause infection. However, CLL patients can be severely immunocompromised and it may be prudent to avoid children who have been vaccinated for the period during which they are shedding the virus." healthunlocked.com/cllsuppo...
If you're in early stages of CLL and still have a reasonable immune system then there would probably be no problem, but best to ask your doctors about this.
I use gloves to minimize contacts. I wear gloves outside in public. It likely helps somewhat. There are inexpensive white dermatological gloves and also the nitril gloves that medical personnel wears. All are inexpensive and by the box on the internet. For housework I wear foodhandlers vinyl gloves, which cost about $25 for 1000.
Sorry to hear yr recent diagnosis, but welcome to the club. I would research GcMAF yogurt which reboots your micrbiome and immune system. My white blood cell count keeps dropping over the last 4 months of eating this yogurt made with colostrum and a probiotic powder with 300 strains of bacteria. The company has branches in Switzerland, Australia, USA and UK and they sell "kits" for making this yogurt. I would try the five day kit first to see if it works for you. Then test your white blood cell count again. You can use the yogurt to make more yogurt but it loses efficacy over time. So for your five day kit you may be able to stretch it out to ten days by adding more milk and colostrum to your yogurt. Read the whole website because near the end of the site there is a further recipe for a smoothie or a list of ingredients you should add to your yogurt which is potassium (or banana), minerals (a supplement), fiber (green leaves or flax meal), aminos (raw eggyolk or coconut aminos), cold pressed olive oil or MCT oil or flaxseed oil or black seed oil (which tastes like terpentine so use a supplement). I put several types of oils in my GcMAF yogurt. Then before you eat the yogurt take vitamin D3 always with vitamin k in the form of old-fashioned cod liver oil. Emerson at the Weston Price foundation insists that it is better than plain vitamin D3. They also advocate raw milk, and I was able to get RAW colostrum from our local farm. Weston Price also had a recipe for GcMAF yogurt but had to take it off their website. Somebody argued with them, it may be back by now. Weston price has a GcMAF yogurt recipe also using a different probiotic of 34 strains only and 400 billion bugs. This is the recipe I used but then the recipe got taken down, their choice of probiotic needs to be sent overnight with a cold pack and loses potency in the refrigerator as I make the yogurt every other day. And Emerson who wrote the article also admitted that the greatest number of strains, variety is better than quantity of bugs/beneficial bacteria.
Research online about nutrition and what ingredients are anti inflammation. Start with green tea, matcha, turmeric with pepper, ginger, CBD oil, etc
Get the toxins out of your environment especially the ones that may have caused your CLL which are radiation, petroleum based products and cigarettes. Filter yr water.
Read a book called "N of 1" by Jason about how he cured himself of CLL with weight lifting and nutrition, and know that if he cured himself, you can too.
Read about intermittent fasting...drink teas made of spices and herbs and forage for diverse phyto nutrients. Reduce sugar and grains to lower the glycemic index of your food. No sugar, use stevia powder or extract.
The GcMAF yogurt is working for me because I know that my vitamin D levels in my blood are on the rock bottom edge of normal and Block of the Block Foundation advised Jason of book "N of 1" that he needed to bring his vitamin D levels up. And Jason reckons this was part of his cure. My white blood cell count has dropped 7 points in the last four months on this yogurt. Aussie Niel on this forum recommends that I not get overexcited by my drop in white blood cell count, I guess there have been false alarms before. But I will add here that I have had another test yesterday after continued use of GcMAF yogurt with all the recommended ingredients and 10,000 IU of vitamin D3 with K in the form of codliver oil, etc and my white blood cell count dropped another two points. The drop is slowing down now probably because I ordered two jars of the probiotic powder to save on delivery and the efficacy of the powder waiting in the fridge has diminished it's strength. It is important to keep testing vitamin D levels in yr blood to make sure we don't poison ourselves with too much vitamin D.
There is a new book out "Mitochondria and the Future of Medicine" by Lee Know, about restoring mitochondrial function and broken DNA with a "cocktail" of COQ10 with ubiquinol, vitamin E, vitamin C, R-fraction alpha lipoic acid, L-carnitine and D-ribose before exercise. This is good for all cancers and general health but is not what is bringing my white blood cell count down.
I don't mean to get people's hopes up only to be dashed down. But my hopes were up and are still up with this remedy because I am experiencing continued benefits. I do exercise often, walking, sailing, mountain climbing, lifting granite stones to build a fireplace, and joyous hikes forest bathing where oxygen ratios are higher than in gyms, and sun walking on Rocky shores of Maine and Antigua. I stopped sharing my husband's work clothes (we were the same size) because I feel that the third hand cigarette smoke clings to the fabric and caused my CLL.
When my white blood cell count was going up last year mostly from the radiation from a CT scan, my health was getting worse with blood in stool indicating a polyp needed removal with colonoscopy. Grains and sugar weaken the cell integrity of intestinal tract. Leaky gut syndrome. I avoid sugar and grains to minimize leaky gut which we all have to optimize nutrients absorption. I'm not sure which got rid of the blood in stool and polyp, the yogurt or the reduced grains. (Possibly it was the organic food) But we need to work on all around general health because one organ does rely on the others.
The purpose of this forum is to help each other. My oncologist said our white blood cell count goes up and down. I said I am taking note what makes my white blood cell count go down while I watch and wait. I would be remiss if I did not note on this site what works for me.
Good luck, have faith and walk in the sun with your children!
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