About 2 years before my cLL diagnosis I started to get bad reactions to insect bites. First noticed it in Miami where I got bitten by a bed bug. Following on from that I would get bitten on every trip, and all most every time I would react badly and end up on IV antibiotics because they got infected. Since starting Ibrutinib I noticed that I wasn’t reacting quite as much to bites received in the UK…..hallelujah I thought. Well I just returned from the Med, where I got 10 mosquito bites, had a bad reaction and one got infected. Luckily I had some Flucloxacillin left over, and was able to take it quickly before the infection took hold.
When I mention insect bites to all the consultants they don’t really have any explanation. Before cLL I never reacted, and in fact never ever noticed bites when I travelled across east Asia and India. Im getting to the point when travelling anywhere is difficult. Insurance is probably going to stop covering me soon because of the claims. IV antibiotics is not cheap.
I’m thinking of seeing an allergist to try and get some advice or at least a view of what I can do to prevent the reactions. Maybe this is just part and parcel of CLL and my broken immune system?
If anyone has any advise (apart from preventing bites, I do everything to avoid them) I would like to hear it. Is there any research or documentation?
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809123
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Very bad reactions pre diagnosis. Then stopped when I started Ibrutinib about three years ago but now suddenly being attacked again. I also have tried everything but last week my Physiotherapist suggested tea tree oil. It doesn’t prevent them but a few drops mixed with a carrier oil is soothing.
If you ever find the secret do please let me know.
I use it to calm the itching (I use the cream from Nelson's), and find it helps on those unidentifiable itches that happen with CLL. And for a bonus it is good for relieving athlete's foot!
Thanks I had forgotten about Nelsons so will look at their website.Sadly I think mine might be flea bites from 🐈🐈 even though they have the treatment from the vets and I spray wherever they sleep I am being attacked badly. A friend who has two dogs is experiencing the same and says it’s the worst he has ever had. I wonder if heat,rain and repeat is contributing to their voracity. 🤔
I’m sure you are right - I know there is a time of year when fleas are very active (vet said), but can’t remember when. We haven’t had any pets since our dog died.
Hope so and keeping 🤞 that they don’t get infected.
Sorry to hear about your dog. I always like to have a cat around, though mine have moved into the neighbours garden while they and the dog are on holiday. Their seats are more comfortable, but amazingly they return for food 🤔
SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed" .
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I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping treat your sores will be part of that care.
That's interesting - I'd love it if B12 could help, I was taking B12 every day already at doctor advice. I went into an area with 'skeeters' and got bit up and down my legs, the only thing that stopped them was spraying myself with Off. Then I could spend time helping non-sprayed relative with swatting them off of relative. Also, what helped with the itch was cortisone cream and not touching the bite, no matter how itchy as it helped it heal faster. If you touch it you can still Re-Ignite the itch a week later.
Since how much CO2 we give off seems to be the best predictor of "who attracts mosquitos", the only scientific correlations I am aware of are that heavier people, and those with higher resting metabolic rates, seem to attract them more. It also stands to reason if you are thin-skinned, you are more likely to be bit, because the mosquito can. Thicker skinned people may not report as many bites, because the bugs can't get through. The suggestions for B-12 and things like Avon's Skin So Soft are more anecdotal, and don't have "hard science" behind them. Like a number of things, it may work only in certain people. Because I have been a mosquito magnet my entire life until I started B-12, but I know a number of people who tried it based on my experience and it didn't work. Like Avon's Skin So Soft didn't work as a repellant for me, but I know some people who swear by it!
Hi 809123, for what it's worth, I use Mosiguard Anti Mosquito spray. It was recommeded by the Surgeon General, British Army, last April, to be used by Troops involved in the 'Covid' crisis. It is not used as a cure or positive preventitive, but as an addition to the other steps we take to minimise 'Covid Infection. it is good enough for If it's good enough for the army, then it's good enough for me. I also find that it is effective against everything buzzy and stingy, but I do appreciate that each individual is different. It's worth a bit of research and if you like what you read, you may want to give it a try. Hope this helps. Ron
I have a similar issues. Am 69, male, diagnosed with CLL is early 2013; currently on W&W. Shortly after diagnosis, I retired from work and moved from Connecticut to Tennessee. Apparently, I am very susceptable to ticks and what is called " no-see-ems" or "chiggers", down here in Tennessee. If I get bit by one of these bugs, the bite area will swell up and last for well over 6 months to a year. I do used bug repellent but once I get bit, I have a prescription from the U.S. Veterans Administration called "Triamcinolone Acetonide" which I apply to the bite area; it seems to accelerate the healing and reducing the swelling and itching.
I used to have a strong adverse reaction to insect bites, which was a problem as I travelled extensively in mozzie prevalent areas, this has diminished greatly as I have aged. (There has to be some good news to accompany the growing list of aches and pains!) I managed the bites with medication. Twenty years ago I was prescribed "Telfast", a real game changer. This was discontinued and I now use Fexofenadine Hydrochloride with the same good results; on prescription in the UK. The sooner I take the meds post bite the faster and better the results.All the usual caveats; this works for me, on medical advice. It might work for you.
What do you mean you do everything to prevent mosquito bites? As far as I know there's only one way to prevent these.DEET based mosquito sprays. They cost about $20 and are highly efficient. Once you spray yourself all over they won't bite you for 10 to 15 hours.
I have suffered from extreme reaction to insect bites for 10 years. That is two years longer than my diagnosis with CLL in 2013. It is not only mosquitoes that plaque me but any little insect can leave me with a bite that itches and becomes uncomfortable. It is amazing how many insects can bite you, I never knew that before! I have written before about what I do as prevention but I can add here that at the moment I take antihistamines on a daily basis and have a strong cortisone cream to apply when I do get bitten. This seems to reduce the swelling but if I get bitten by a mosquito I still have at least two days of great discomfort. The burning sensation, more than the itching , can keep my awake at night. I have not discovered yet what to do about that, although I have experimented with partial success with compresses with cider vinegar, or applications of green clay mixed with tea tree and lavender essential oils. Here , in southern France, they swear by applying drops of undiluted lavender oil straight on the bite immediately after being bitten, but I have not found relief from that. At the moment I am not sure what else to do to relieve this discomfort. It certainly is not a B12 shortage since I had absurdly high levels of B12 in my last blood test.This allergy seriously interferes with my life as in summer I am reluctant to go outside. The only time I risk it ( after having sprayed my skin ) is in the early morning when it is too cool for insects. After that I stay indoors as much as possible. If I do need to be outside I have to spray my whole body. Even so they often find a small spot that I have overlooked! Long sleeved mosquito proof clothing is very helpful but can be very uncomfortable to wear in the heat that we get. I have found a thin net over my face helpful in the heat, you can buy these on Amazon as part of a selection for those who like fishing.
I hope you will find something that will work for you. Please let us know if you come across something that has not been mentioned before . All the best
My issue with sprays (deet or whatever) is that they say not to spray under clothing- that is of course where the blighters go, or through! I have invested (at sale time) in insect repellent clothing and have wraps, trousers and tops that contain a washable (30c) impregnated insect repellent called ‘NosiLife’.
I still spray waist band cuff and ankle areas and anything exposed at regular intervals and feel I can go out.
I also bought (great hilarity from my family) an insect repellent net structure that I can put my chair in and sit and read in the garden unmolested. The cat finds it very puzzling as she can’t get in but that’s the least of my worries!
I was always a mosquito magnet, and also had 2 Lyme disease tick bites 20 years ago. I'd get 100 skeeter bites in minutes without DEET, then would swell up. Some would blister and get infected, and it would take weeks for each bite to heal. If I missed any skin or clothing the mosquitos would feast.
For the itch and pain, I've bought every bite remedy but nothing worked for me. I was on vacation in Canada, when my head was bit at least 50 times by black flies, and I finally discovered quick and long lasting relief. I used a blow dryer on high for about a minute, all around the bite area. It would completely relieve the pain and itch, even for the worst of bites. The purplish swelling remainsed and I would have to repeat heat a few times daily, but it would allow me to sleep and get on with my day without pain and itching.
Then last season I came across my cure for bites, completely DEET-free. I was already taking Vitamin B12 and my blood levels are high normal. Also tried garlic oil, but no relief. Then I read last year about Vitamin B1 (Thiamine) 250mg -500 mg daily. It's cheap with many anecdotal reports online that convinced me to try it. I've not had one bite in the past 2 summers, but not for a lack of mosquitos.
Hope you find relief from the bites, pain and infections.
I too get terrible reactions to mosquito and other insect bites since I’ve had CLLThe Simms Bugstopper clothing has worked wonders for prevention for me. I use Repel lemon eucalyptus oil spray with the clothes. I live in the woods and garden and fish extensively. I hope this helps you too. Tony
I used to be a mosquito magnet. But since I started eating whole foods plant based diet the mosquitoes don't bother me much anymore. I also get a bad reaction to bites. My husband (who is a retired physician) once read a scientific article about leukemia patients and reactions to bug bites. Here's a wee JAMA report mentioning it. It doesn't say much more than yes, we have more of a reaction. I had a heightened reaction before I was diagnosed with CLL. jamanetwork.com/journals/ja...
Have you tried over the counter non-drowsy antihistamines? Benedryl is the most effective but it knocks me out. I still have to cover up, protect any exposed skin with a DEET based spray and use hydrocortisone cream post bite, but they help to damp down the huge swellings. My Hematologist is perfectly fine with me taking this too.
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