CLL 2 yrs. No treatment yet. Persistent UTI and Sore Tongue - Any ideas for help?

Hi - I'm new to this community. First felt swollen lymph node under jaw, diagnosed CLL Jan 2015 at age 63 female. Shocked at first and scared now, watching my numbers going up moderately fast, and periodic pain in swollen nodes. In watch and wait per my hematologist.

Have had UTIs in the past, then Nov 2015 got UTI and no antibiotic cleared it. Had scope, no problems seen, taking Cranberry Extract, Vit.C, D-Mannose, and acidophilus as prescribed by Urologist, symptoms still persisting then developed a burning rough tongue with raw spots, hard to eat and talk sometimes. Doctors have no solutions.

Also reading as much info, and attending seminars etc. about CLL research and treatments to help me prepare.

Has anyone had any of these problems, any suggestions?

31 Replies

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  • Hi and welcome...

    I would suggest a complete test for Herpes family of viruses... Do you know were your immunuglobulin levels are at?

    I assume they did both bacteria and fungal cultures for UTI? Any autoimmune tests?

    ~chris

  • Hi Clicanada

    I will ask about complete test for Herpes family of viruses - why would they create these symptoms?

    Immunoglobulins

    IgG normal

    IgA normal

    IgM - barely below normal

    Don't know if they tested for fungal cultures - will ask - don't know about autoimmune tests - see hematologist in Jan - What tests would I ask for?

    Thanks

    Barb

  • Hi Barb,

    The herpes family viruses stay resident in the body and occasionally cause problems when they reactivate. Being viruses, antibiotics are useless.

    You don't need to ask for specific auto-immune tests, just ask whether your health challenges could be due to auto-immune complications and let your haematologist consider which tests could be appropriate.

    I hope you can find some answers to what must be a very painful and wearing conditions.

    Neil

  • Hi Neil

    Thanks for your input, will ask my haematologist.

    Barb

  • Suggestions only. My mother suffered from uti in her sixties. She had to give up on baths and only take showers. Are u using hot tubs or public pools. All of those things have been irritants for other women I know. I have a chronic cough with green phlegm that has persisted since I developed the original high lymphocyte count. It waxes and wanes in severity. I have been tested upside down and no explanation. My wise retiring otolaryngologist said once I told him about my CLL last year -your nose has always been a weakness and as you are aging it is a weak point.

    This may be of little help but it might be worth consideration. Have you been a person who suffered from UTI before if so it may be ur weak point. The sores might be from the medication that is not working for your uti.

  • Hi

    Yes I had trouble about 10 years ago with utis then it quit for quite a long time. I have quit having baths and hot tubs. I have used pools at some hi end resorts, not general public pools. I think you might be right about have cll and where ever our weakest point is, that's where we have problems and this might be mine. I quit all med. about 6 months ago, and no change with my tongue.

    Thanks for your help.

    Barb

  • Definitely check for fungal infections but also the bath is also very important not to do. For the UTI did they put you on Bactrim? The other thing I am thinking about is the cough , have they done a CT scan.? I had Bronchiectsis which can only be diagnosed by a CT not by X-ray. Be well.

  • Will get the fungal infection checked and no never been on Bactrim, will ask about that also.

    Thanks

    Barb

  • Sometimes symptoms of a UTI is caused by low estrogen levels, and may be relieved by the application of an estrogen cream applied locally. May be worth discussing with your physician, taking into account any contraindications.

    Regarding the mouth sores, a low hemoglobin level can sometimes cause the tip of the tongue to be sore, red and irritated, and might also cause other mouth sores. Not sure what you have tried, but baking soda rinses and using it instead of toothpaste might be soothing. Also, keeping away from any spicey or salty food or eating or drinking foods that are allowed to cool down a bit might ease some of the discomfort. Just wondering if a discussion with a nutritionist might be helpful. I hope that you can find some relief soon.

    Sandy

  • Thanks will try the baking soda instead of tooth paste. I did switch to a bland tooth paste and it felt better. Also I have stayed away from spicy hot etc for a long time because it does make it worse. Will watch hemoglobin, right now okay.

    Barb

  • Hi

    I think it was the oestrogen that worked for me, as well as strict hygiene.

    Toddler wipes are my new friend!

    Cheers Ottie

  • Thank you. Will ask about oestrogen I have heard the ointment might help.

  • Hi welcome to the family. You are in the best possible place for advice, and support. the good people here will have most of the answers to your questions, or will provide links to professional support.Good luck on your journey.

  • I have found no scientific evidence to back this up but when I developed tongue and gum sores at the start of my FCR treatment one of the chemo nurses suggested I try drinking pineapple juice. I did so and after a few days all the sores had cleared up.

    Worth giving it a try as it will certainly do you no harm.

    Best wishes.

  • Thanks worth a try.

    Barb

  • Hi Jiggs17, great that you've joined us but sorry you've had to :(

    I am currently lying on the couch with a UTI and have found that to be my weak point since my CLL diagnosis 2 years ago. Antibiotics still work for me but I'm guessing they won't if I keep using them! Sorry to hear they're not doing you any good.

    The only thing I can say is that I don't eat much sugar - pretty much no refined sugar in an effort to assist my health - and I seem to get UTI flare ups on the rare occasions when I do eat sugar, which is on special occasions or holidays eg now after Christmas. I can't say that the sugar is responsible but it is a pattern I have noticed.

    Also I read somewhere that cranberry can make things worse for some people and I think I'm one of them. I know that is probably just confusing you and not helpful at all but just in case that's you too it may be worth sharing.

    Not sure that's any good to you but I do sympathize as a fellow UTI sufferer!

    Wishing you comfort and less pain!

    Stay in touch

    Firefly x

  • Hi

    Thanks for your info, I'm sorry you have another UTI as well. I have been wondering about the sugar myself, I'm going to try going back to little or no refined sugar -

    And I think I will try no cranberry maybe that makes it worse

    Thanks

    Barb

  • Thanks hugely neurodervish, I will get my paws on some D-Mannose post haste! Hopefully it will be of some help!

    Wishing you wellness!

    Firefly x

  • Actually the D-mannose et al take the edge off the UTI so I'm grateful for that, was hoping to find a complete fix or if anyone seen an correlation between UTI and/or sore burning cracked tongue.

    I sure appreciate all the feed back lots of helpful ideas.

  • TMI

    Thanks for the websit you sent is excellent, I didn't know anything about the menopause #27. Read the whole article, on the burning tongue, I have been doing a lot of the suggestions, only by accident, avoiding what felt worse, but have added B12 to my supplements. and will look into Macafem and Black cohosh.

    As for the hormone cream locally, prescribed temporarily by urologist, but maybe I should ask him again about it. Thanks Sandybeaches

    I went to an E.N.T. specialist, she diagnosed me with burning tongue and geographic tongue, but my raw spots are very sore, but thank goodness they move around. She suggested reading this short half page notation to read and good bye.

    You gave me a better resource, far more informative and helpful with suggestions. Thank you every so much.

    I've tagged that website for future reference.

    Barb

  • I also have had sore mouth which we treated with vitamin B 12 injections which helped. I use icy hot with lidocaine under my jaws. I know it sounds crazy but it will help for a while!

  • I went right out and got B12 tablets started yesterday. I'm also trying baking soda and no more tooth paste, see if I can get some relief.

    Thanks

  • Please have your doctor test your B12 and folate levels...if you have no intrinsic factor (IF)... you won't have much B12 uptake from pills... they just pass on by...

    en.m.wikipedia.org/wiki/Int...

    ~chris

  • I am learning so much. Thank you Chris I will ask Dr. about my levels and (IF)

    I am so grateful I found this site and this wonderful group of CLL buddies.

    And so much more to learn as we progress on this CLL journey.

    Barb

  • Hang in there!

  • In regards to Cranberries.... and UT Iinfections

    jamanetwork.com/journals/ja...

    Also...

    Alternatives to Fluoroquinolones

    jamanetwork.com/journals/ja...

  • My aunt-in-law was also having the same problems as yours. She is 65 and was having recurrent UTI almost every month. She had been diagnosed with CLL and is on Wait and watch method for 2 years now. I took her to my friend who is an oncologist specialised in hematology and my aunt -in-law is now much better without taking any chemotherapy drug but an antibiotic inj only. She has not had any UTI for anout 3 months now and even her reports have improved. You may send me your reports, specially Flow cytometry CLL panel along with CBC and Urine C/S. I can show the same to this friend of mine. I am sure she will be happy to help you with her opinion and you may then discuss with your hematologist on the same.

  • Hi Arunima,

    It's encouraging to hear that you were able to help your aunt-in-law and that she is doing much better.

    I appreciate your offers to help some of our community by offering the services of your friend oncologist/haematologist. If your friend is interested in voluntarily assisting members of this community, the appropriate means of engaging her and showing our members that she has approval to do so, is to put her in contact with the CLL Support Association's Board for their approval of her voluntary membership and support of this community. I'm happy to facilitate that if your friend is interested. Until then, on the basis of having continuity of care from known medically qualified personnel who can physically examine members and who would have on record what prescriptions members are taking and what antibiotics they can tolerate, I strongly recommend that a more appropriate way to help our members is for you to let our members know what worked for your aunt-in-law so they can suggest that as an option to their doctor/specialist.

    Thanks for your understanding,

    Neil

  • Yes. Of course. I will surely talk to her on this and get back to you.

  • Ask your doc to consider giving you an Rx for Chlorhexidine Gluconate oral rinse - it is more usually prescribed by oral surgeons and dentists so internists and family practice docs are not always aware but it can help reduce mouth sores and is relatively inexpensive.

    Regarding your infections, I am going to have two monthly infusions of IVIG to help clear up a sinus infections that I've had for several months - it has caused several lymph nodes in my neck and jaw area to enlarge and start to bother me. My blood counts are not high enough for chemo treatments so this is just symptom management. This past year I have also had a couple of UTI's and other infections - all of which I would only have had very rarely in the past.

  • Hi Thanks for your suggest about the rinse. I will ask Dr. next visit. They had thought I might need an infusion, but Hematologist wants to wait to see if my system can work though it first. Last culture showed tolerable levels of bacteria so continuing with the D-Mannose, Cranberry, Vit. C, and Probiotics. they seen to help with the systems.

    Good luck with the Infusion. Keep us updated. Thanks again.

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