Can I do anything to stave off persistent winter colds?

[is-sul]

I was diagnosed in early stages two years ago. So far I have had no symptoms and I have 6 monthly blood checks and a telephone discussion with a CLL nurse. However I do get prolonged colds every winter - and that has been happening for about 5 years, other than that I am pretty healthy and fit. Has anyone found a supplement or health food that has helped stave of winter colds?

[Newdawn Administrator]

Obviously question I know is-sul but I presume you've had the flu and pneumonia vaccines?

Newdawn

[AussieNeil Administrator]

Easier said than done, I know, but I've found taking precautions to avoid respiratory infections far far easier than getting over them. If your immunoglobulins are low enough, IVIG infusions can help, but otherwise I too would like to know how to better manage winter's ills. Thankfully summer is fast on its way here!

You haven't said what you mean by prolonged, but I long for the days when a cold lasted 7 days without medication and a week with medication... Nowadays I do well if I get over a cold in 3 weeks, with up to two months not uncommon.

[Cllcanada Top Poster CURE Hero]

Stay away from crowds, kids and hospitals and wash your hands frequently...

There is a Canadian product called COLD FX, that was tested on CLL patients with mixed and rather poor results... but some people swear by it... perhaps the power of placebo, I' don't know.

ncbi.nlm.nih.gov/pmc/articl...

[nHarriett]

Dr. Oz <g> said to use saline nasal mist on air trips because the air in airplanea is very dry and somehow the moisture in the nose can help to ward off viruses from sick passengers. My house air gets very dry from our gas furnace each winter so for the past two winters I have kept a humidifier going 24/7. And, for those two years I have not had a cold. When we turn off the furnace I turn off the humidifier but keep a nasal saline spray in my purse - otherwise my nose gets very dry.

[vepiskop]

take 5,000u vitamin D3 per day

and

if you are in Europe take immiflex which is 1,3/1,6 beta glucan micromolecular (Wellmune WGP) +1,000u vit D3

In the USA search for Wellmune

vepiskop

[AussieNeil Administrator in reply to vepiskop]

Sorry to put a dampener on your well meant advice Vepikop, but while boosting Vitamin D intake at high levels might help our immune systems, I'd tread wearily, particularly when it comes to extended use, at least until Mayo Clinic find out whether higher doses of Vitamin D are safe to take if you have CLL.

Ditto in particular for beta glucan. Chaya Venkat (CLL Topics) warns that beta glucan boosts the effectiveness of Rituximab and that it could potentially precipitate Tumour Lysis Syndrome.

clltopics.org/Phyto/BetaGlu...

so you would definitely want to avoid it while having any treatment that included Rituximab!!

Chaya also states that "Beta-glucan supplements can be real dangerous for people with autoimmune disease."

There's even one variant of CLL where "CLL cells ... proliferate in response to β-(1,6)-glucan"

ncbi.nlm.nih.gov/pubmed/232...

As Chaya concludes: "Seriously folks, I don't want to hear that any off you are rushing off to buy this stuff, and self medicating yourself, without learning about it, and getting help with using it if you think this concept is worth exploring."

This just goes to show that supplements that are beneficial for healthy people can be very dangerous for us and reinforces why you shouldn't take any supplements without informing your CLL specialist and definitely not while you are undergoing treatment!

It seems nothing is easy when trying to work around the impact of CLL on our immune system...

Neil

[vepiskop in reply to AussieNeil]

they have tested 10,000u Vit D3 and it is safe!

There is a publication out there (Mayo Clinical trials). I don't have time to find it.

As for beta glucan WGP and autoimmunity there is a lot more testing and use by the general public since Caya wrote this. There are reports that Wellmune helps asthma and other autoimmune conditions. In addition, autoimmunity is not linked to strong immune system but a defective set of antibodies that cause inflammation. Studies show that WGP boosts the immune system without enhancing inflammation.

I my self have been diagnosed with CLL and I was suffering from persistent colds and other conditions including shingles. I tried everything but when I used immiflex 3 years ago I never got a cold again!!!

By they since January 2013 I am immunocompromised (I have no neutrophils or immunoglobulins). Everybody is sick with colds around me but I don't get sick, and I heal quickly from cuts. I did not used to be like this when I was not immunocompromised and I was not taking immiflex Wellmune. It worked for me!

of course I am anaemic with Hb 90. I have not been treated yet because I am waiting to be included in clinical trial.

I recommended it to lots of friend and relatives. My mom suffers from chronic allergic asthma and used to have lots of respiratory infections. She used to use antibiotics all winter. Since she started taking Wellmune tow years ago, she does not have any lung infections and has not taken antibiotics for a whole year now.

Taking Antibiotics is really BAD, Wellmune is not.

Of course moderation is the key in everything and most importantly in supplements and other drugs.

Please do not scare the people.

Let them ask their doctor first and

Let them try Wellmune and Vit D3. It may work for them.

all the best!

vepiskop

[AussieNeil Administrator in reply to vepiskop]

Hi Vepiskop,

Firstly, I hope you find that trial soon considering how your CLL is suppressing your blood counts and affecting your immunity - I know what that's like.

I agree with you that if members of this community wish to try your recommendation that they should ask their doctors first.

I also agree that Vitamin D is safer in high doses than many other supplements - I take moderate amounts myself. However, we still don't know if high doses of Vitamin D3 can accelerate the growth of B-lymphocytes - we're all hanging out for that Mayo paper that will cover specific research on CLL patients.

Antibiotics can be bad and they can save your life. I've both had my life saved and nearly died from antibiotics used per prescription.

I'm glad that you've had success with this regime but you do need to understand that CLL is a very heterogeneous disease; what works well for you could cause someone else serious complications - even death. Tumour Lysis Syndrome can be fatal; just this year the ABT-199 trial was temporarily halted because two patients died suddenly from TLS. I would rather "scare" people, than find out that someone died because they went ahead and used a supplement, when I was aware from reading reputable CLL sites that there was a quantifiable risk in doing so and didn't give them a link, so they could read it and make their own decision in consultation with their specialist on what to do.

I'm sure members of this community would be very interested in reading more recent references specifically demonstrating the safe use of beta glucan by CLL patients than the 10 year old one from Chaya that I quoted. Likewise any recent studies on how CLL patients fared with high doses of Vitamin D3 would be of great interest to me and others here.

Thanks,

Neil

(Who would also like to find a safe way to significantly reduce the time spent suffering from cold symptoms.)

[PaulaS Volunteer in reply to vepiskop]

Hi Vepiskop,

It's great to know that Wellmune and Vit D has helped you and others you know. But I agree with AussieNeil, that extreme caution is needed - what works well for some people, can be disastrous for others. There are far more unknowns and potential dangers for people with CLL, than for the general population.

As you and Neil both say, let people ask their doctors first.

Best wishes,

Paula

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

Here is the full study on M-CLL and B cell proliferation in response to beta-glucan.

ncbi.nlm.nih.gov/pmc/articl...

[sparkler in reply to Cllcanada]

Thanks for that link Chris.

I've read it but I don't understand it (that's an understatement)!

There isn't any chance that either you or someone else could précis it in simple English, is there?

No worries if it can't be done....no pressure. Lol

sparkler x

[Cllcanada Top Poster CURE Hero in reply to sparkler]

If you are IGHV gene mutated, specifically VH3-7, beta-glucan, can make B cells proliferate according to this lab study. Something else to be careful of are large doses of vitamin C.

Nobody with CLL should be taking anything without the approval of their CLL specialist, this includes various probiotics and some food items.

[sparkler in reply to Cllcanada]

Thank you again Chris.

I was just about to write, saying I can do without a translation, when I saw you'd already done one - you're a star. x

[PaulaS Volunteer in reply to sparkler]

Hi Sparkler, I'm glad you asked for a translation into simple English. I'd read the article and didn't understand it either... So, thanks from me too, Chris.

[ygtgo]

I always use an AirTamer A300 when I am going to be in crowds, especially when I am on public transport, taxis, hospital/doctor visits etc.

It emits a constant stream of healthy negative ions that force airborne pollutants away from your personal space thereby helping to protect you against harmful airborne pollutants like viruses and allergens. You wear it around your neck, another one is a Fresh Air Buddy.

This year I have added a Snood to my wardrobe, that I will use like a mask when the coughing brigade start up.

In keeping with the winter weather here in Scotland, I have bought a Scandinavian winters coat, base layer clothing, heat holders - thermal socks and gloves and hat.

[splashsplash]

I have found good old fashioned 'steaming' helps with the symptoms of these endless colds.

Boil a kettle pour into a heat proof bowl then sit down and put your head into the steam WITH EYES CLOSED (so you dont scald them) and put a tea towel over your head. Deep breath the steam through your nose as well for one minute. Repeat as often as you can in a day. I heard of one GP who wouldnt give out antibiotics until the patient had at least tried steaming, it is surprisingly effective.

[MsLockYourPosts Passed Volunteer]

I never mention the dose of D3 I'm on, because what people need to get to and stay in a healthy range varies so much. It took two years with checks every 3 months to get my Vitamin d level into a stable, healthy range. for those dealing with real winters It is probably more complicated if you process D from the sun - I apparently don't - as you have to deal with seasonal differences. I don't think the issue is whether 10,000u of D3 is safe. It's what does your body need for good overall health. Some need nothing, others need a small dose, and some require a fairly high dose to stay in the recommended range.

I would never take something because it was recommended on a discussion group. I have asked my doctors to check numbers because of discussions in groups like these, but my doctors have the final say! I know people who have ended up in trouble because they rushed out to buy something that another poster claimed worked for them. Maybe it did, but none of us have the training to be telling others what to take.

Pat

[sparkler]

I have deleted my previous post on this thread, as I think it may have been misinterpreted and I might have been misunderstood.

I was trying to demonstrate that what is right for one person, is not necessarily right for someone else and could be dangerous.

My advice is to always get your Vitamin D3 levels checked by your doctor, before taking any and that when it comes to other supplements, advice should be sought first from your CLL Specialist.

sparkler x

[HAIRBEAR_UK Founder Admin in reply to sparkler]

I recall your first post was good we all say things a little differently. Thank you for sharing Sparkler the message you have provided is an important one.

Nick x

[sparkler in reply to HAIRBEAR_UK]

Cheers NIck

This is a subject I feel strongly about.

I shall take more care in future though, to try and ensure that any message I want to get across, doesn't get lost in the relating of my own personal experience.

sparkler x

[is-sul]

Many thanks to you all for speedy and swift replies. I have checked with my CLL specialist and they say I'm OK to take Immiflex. So I'm going to give it a try. I asked about pneumonia vaccine when I had my flu jab but my practice nurse (UK) said I wasn't on the at risk list, I'll check this out next time I see the doctor.

[sparkler in reply to is-sul]

Hi is-sul.

I'm sorry to say this but you are at risk and do need to have the Pneumonia vaccine.......your practice nurse is incorrect if she thinks otherwise.

If you are not on the risk list, then you need to be and should have the vaccination as soon as you can.

sparkler x

[Cllcanada Top Poster CURE Hero in reply to sparkler]

The new recommendation for immunocompromised patients from the ACIP of the Centers for Disease Control in the U.S., is to have PVC-13 and the PPSV-23 pneumonia vaccines. Print this out an take it to your Consultant. cdc.gov/mmwr/preview/mmwrht...

[AussieNeil Administrator in reply to is-sul]

I'm sure we'd all like to hear how you go on this. Just be aware that testing to see whether your particular variant of CLL is sensitive to beta glucan is only available in a specialist laboratory setting, so the only way you can check that you aren't accelerating your CLL is to check your Absolute Lymphocyte Count doesn't start climbing. It's only a small risk, but it's there. It would be wise to check your Vitamin D3 levels too as 1 Immuniflex tablet contains 25 micrograms of D3 or 1,000IUs.

Given beta glucan is derived from yeast, I can see why it would cause problems in CLL patients where their B-lymphocyte clones are sensitised to a yeast/fungus.

Neil