Suggestions needed!

[teb0513]

Hello all. It has been a while since I've posted, but I have a question and need some guidance. For the last 3 weeks, I have been struggling with sinus/coughing stuff. It's close to fall here in the U.S. and as such, I'm thinking its allergy related but my allergy meds are not clearing me up and I've been running a low grade fever that will break when I take Tylenol. I just HATE the thought of going to my GP. Any suggestions on how I can get rid of this stuff without going to the GP? As always, I am truly grateful for this community that reaffirms I am not alone in this CLL journey. TEB....

[kathypawpaw]

What is your normal body temperature when you are not having any issues? I do a lot of reading and I read that people with cancer usually have a basil body temperature below 98.6. For me my usual body temp. is 98.4 which isn't too bad but it is ALWAYS low. I read that cancer does not thrive well in high body temperatures so you might look at this as your immune system trying to fight off what ever is going on probably alergies. Lots of folks without cancer have them this time of year. I would mention it to your oncologist. Have you ever tried dandelion root tea? It is very soothing. Three times a day. Tastes great and may help you feel better.

Kathy

[teb0513 in reply to kathypawpaw]

Thanks, Kathy. My normal temperature usually runs around 97.5. I've had 1 IViG treatment earlier this year and have been told by my oncologist that because I have celiac disease (an autoimmune disease) and CLL - both are doing a number on my immune system. I'm going to try the dandelion tea - sounds wonderful.

[kathypawpaw in reply to teb0513]

Good luck I also have skin rashes that have flaired up since I got CLL. No one seems to know what they are just something I have to deal with I guess. Never had rashes before CLL but the doctors really don't have a good explaination of what is going on. I love this tea. I think it tastes good but you could add a little stevia to it if you want to. Best of luck to you.

Kathy

[Cammie]

Whilst you obviously feel you don't want to see a doctor I would advise that you do!

Don't take any chances with any infection as a cll patient you never know how they will affect the immune system especially the lymphocytes or Nuets.

Don't make matters worse by burying your head in the sand !

We need to look after you!

[teb0513 in reply to Cammie]

Thank you, Cammie. Your right - calling the GP this am.

[PaulaS Volunteer]

Hi TEB,

I'm sorry to hear about your 3 week struggle with sinus/coughing. Like you, I would have suspected an allergy, but as your allergy meds are not helping, then I really think you'd be best to get advice from a doctor. It could be that a different allergy med would help... Or maybe you have an infection or something else, that needs to be identified so you can get the right treatment. A fever for 3 weeks, even low grade, is something we as CLLers should not ignore.

I'm wondering why you feel so strongly about not wanting to go to your GP? If you don't feel you'd be listened to, maybe you should look for another GP?

Wishing you well,

Paula

[flutterbye]

I used a nasal spray called xlear. It has xylitol a sugar substitute in it, bacteria doesn't like it. Worked a treat for me and because it is all natural you can use anytime.

BW

Jacqueline

[Cammie]

Teb

How did it go at the doctors?

[Peggy4]

Hi TEB. Sorry to hear you're unwell. My haematologist said not to wait if I felt an infection coming on but to get myself down to the Dr's before it took hold. I would suggest you go. My own GP is great so I am lucky. If yours is not sympathetic, change, we need all the support we can get. Peggy

[teb0513]

I was able to see my internist and I have a nasty sinus infection and bronchitis. Ugh. The twist is that I was running a temperature of 100. My internist has already contacted me to check in on me this evening. The fever breaks with Tylenol but comes back unfortunately. Internist basically said if the antibiotic doesn't kick in by tomorrow will have to get IV antibiotics since I'm ultra sensitive to the more common ones. WBC was 26.3 - my baseline is 17. Fingers and toes crossed that fever goes! Thanks everyone! I can't tell you how much this community has helped me! TEB

[Justasheet1 in reply to teb0513]

What antibiotic did you get put on? Did they give you steroids too?

Get well quick. I know your pain. Unfortunately.

Jeff

[teb0513 in reply to Justasheet1]

Doxycycline 100 mg for 7 days - no steriods. This antibiotic seems to be the only one I can tolerate - zythromycin, penicillin, sulfa, levaquin- I get hives along with anaphylaxis.

I'm just praying it works. I hope your doing ok, Jeff.

[MsLockYourPosts Passed Volunteer]

Ask about having a culture done to determine which antibiotics would be effective or if this might be fungal in nature. You might also ask about whether an expectorant might help or, if the sinuses are not draining, a pred. pack (has other names - a course of prednisone over several days with less each day to shrink swelling and open the sinuses). One thing some of us learn the hard way is to call a doctor at the first sign of a problem and let him/her decide our best course of action.

[Cammie]

Teb

We all have a tendency to shy away from visiting our doctors!

With our condition,however, it is so important to act quickly when an infection of any sort strikes us!

Just a 10 weeks ago I was admitted to hospital with a temperature of 38.5c and a small lesion on the tummy. Grave concern was expressed when I attended triage and my consultant diagnosed a pseudomonas infection.

It appears this germ is common in water and soil and is controlled in normal healthy people by the immune system but to CLLers it can be fatal!

Fortunately I had the sense to visit the leukaemia unit as soon as the temperature spiked and with antibiotics the temp vanished within two days but it took 8 weeks for the lesion to heal!

This and your story about your infection should be a warning to all CLLers do not ignore an infection with a high temperature it can become very serious! Even the simplest problem can escalate to a more serious situation!

Cll comes with a warning on the packet!

Geoff

[teb0513]

Thanks, Cammie. I am glad I went to the internist yesterday and hopeful that the antibiotic starts really working. I have been told/warned by my oncologist and internist who are working together (finally!) that any infection I pick up can be life threatening if I let it go too long. That "talk" got through to me yesterday as well as this community.

It is just beyond me as to how I picked this infection up when I feel that I'm taking precautions to avoid getting an infection -

TEB -