Low WBC, fevers, night sweats, and so on

[genko_b]

For almost a month now I've been dealing with a succession of issues that are piling up.

It started with a bladder infection, which seemed to go away with the first two antibiotics. Then my monthly blood work came back with a WBC of 1.8. After that I developed a low grade fever that has gradually become less than low grade - averaging about 102 - paired with night sweats. I can bring it down if I take a huge dose of Tylenol, but it comes right back up again after about an hour.

Now I have added some sort of lung issue (persistent dry cough, shortness of breath). The chest x-ray today something in the lower part of my left lung. The doctor said she "hoped" it was an atypical pneumonia, and prescribed yet another antibiotic just in case, but she also said she thought this was all a progression of the Sjogren's.

They have been repeating the blood work each week and the WBC has come up a bit, but not into anything near a safe range. So I'm having to minimize contact with folks. Needless to say I'm off the CellCept and methotrexate until things stabilize a bit.

Has anyone else had an experience like this? The fever sucks - I'm usually around 97.3. I feel like I could sleep all around the clock.

Genko

[eyeamdry]

Genko, sorry I can't be of help on this.  I know what they all are except I never seem to get fevers.  I hope someone will come along and give more helpful info.    Lucy

[genko_b]

I never used to get fevers, either.

I should hear back about some of the test results today, so perhaps I'll know more after that.

Genko

[jazzlover]

Get tested for mycoplasma for sure. Ehrlichiosis also causes low WBC and fevers. Hope you feel better soon!!!!!

[Navigator]

I don't like the idea of "hoped".   Breathlessness, night sweats, weight loss (which you do not have you've said) and a shadow more near the sternum could be lymphoma.  You need to push your doctor to see a specialist and get it checked out.  It is usually slow growing and treatable in us if it is the SJS complication.

[jazzlover]

Good point, navigator.

[genko_b]

We have talked about the possibility of lymphoma, and that will be next on the list if this antibiotic doesn't help. That is why they are "hoping for pneumonia," as opposed to lymphoma.

Genko

[jazzlover]

Mycoplasma is basically walking pneumonia. Hope that is it...though it can become chronic. Stay with it.

[Bucky]

Genko - sorry you haven't been feeling well.     I hope this latest round of antibiotics does the trick.

Hope you feel better real soon.

Bucky

[irish]

genko, I have severely low T Cells and had Mycobacterium kansasii back in 2005. I was treated with 3 different antibiotics (total of 8 pills a day) for one year. This mycobacterium is a form of TB that is noncontagious and is often found in people with compromised immune systems.

The symptoms that you are describing are like those of a mycobacterium infection. Did they do an acid fast bacteria culture of your sputum??? It takes about 8-10 weeks for the results to come back. I was diagnosed "accidently" during a cat scan for another issue. I had the tubercles or infectious lesions in my lungs, liver and spleen. Boy, were the docs surprised.

I didn't feel good but wasn't running a fever. If you were on the cellcept and methotrexate your white cells probably declined and set you up for an infection of some kind. If I remember correctly you have some WBC issues anyway. Then, of course, like you said, the sjogrens can affect the blood cells.

There are many of these mycobacterium and I was diagnosed with another one called mycobacterium gordonae which is usually not considered to be problematic. I have never been treated for that one per doctors decisions. The meds for these infections can be hard on a persons body, but one does what is needed. I hope you get some information and get starated on treatment that will help. Good luck to you. Irish

[genko_b]

Hi Irish:

I'll ask about mycobacterium when I go in to the doctor again on Monday. I'm checked for TB every 6 months because of my work at the prisons and also with dual diagnosis HIV/Aids and drug addicted clients. So I'm in a pretty heady brew of potential bugs anyway. Needless to say I've been forbidden contact with any of these groups until I get this sorted out.

Genko

[genko_b]

Just returned from the doctor's office yet again. The WBC is back in the low normal range, which is wonderful. However four rounds of antibiotics have still not rooted out whatever the lung infection is - they are calling it viral and/or atypical pneumonia. Most likely I picked it up at one of the prisons or with the group who are dual diagnosis drug addict/HIV/AIDS. Needless to say, all those groups are still off limits to me.

Still have the cough, shortness of breath, fever, and night sweats.

I'm off all immunosuppressant therapies (CellCept, methotrexate) until I'm stabilized in a halfway safe space.

I think it got very entrenched when my white count was down and now they are not able to stop it.

Anyway, that's my report. A good thing I'm too pooped to get into trouble!

Take care,

Genko

[Bucky]

((Genko)) - I'm glad your WBC is within the low normal range, but I'm sorry you are still feeling rotten and can't seem to shake your lung infection.

What's the plan of action from the doctors now?  Wait and see?

Sounds like you need some R & R in your gardens.

Thinking of you and wishing you a speedy recovery.

Bucky

[genko_b]

Thanks, Bucky. Other than essentially being quarantined, the docs have not given me any other ideas, except some stronger cough suppressant since it is not a productive cough. That helps with the cough and the pain as well.

Mainly I'm just resting on the couch, watching tornadoes and storm rescues on The Weather Channel.

Hopefully the doc will call tomorrow with the latest test results and see if we want to try yet another round of antibiotics. Both lungs are heavily affected.

I wish I could get out in my garden, but it's out of the question. The air is too cold and I have zero energy. I can't even stand at the window to look at the garden right now.

Take care,

Genko

[irish]

I think at this point if I were you I would ask for a referral to an infectious disease doc. I was seen by rheumatology when they found the lesions on my lungs, etc and they sent me to infectious disease who took care of me during the whole year I was on the meds. I was seen often.

I can't believe that they haven't done an acid fast sputum on you yet. That is the only way to get a good diagnosis on a TB (the regular kind which is also in the mycobacterium family) or the mycobacterium kansasii which is the noncontagious kind. There are quite a few other mycobacterium infections.

I am surprised that they let you continue working with the HIV/AIDS and others at the prison while you are on the cellcept, etc. Anyone on those medications is high risk for infection and the prison population is really rampant with all these bugs, both diagnosed and undiagnosed.

I was placed on rifampin plus the 2 other drugs given for TB for that year.  Ethambutol and INH is what I was also on. After about 2 months I became allergic to the Rifampin and it was replaced by Biaxin. Hope you get to feeling better and please keep us updated on your condition. Irish