I'm looking for input from anyone on our site who might have had trouble with the organism Haemophilus Influenzae; or, anyone who is otherwise knowledgeable about it.
I've just finished a fight with an upper respiratory illness over six weeks, and it was very similar to one I fought back in January. It started both times with sore throat that blossomed into head cold, produced a cough that lasted most of the entire time until I recovered, and ultimately went into ears and eyes. The first time, after it went into my ears, I was given an oral antibiotic and also six day steroid pills. Then when it went into the eyes, an Opthalmologist prescribed antibiotic eye drops and eye drops that were steroids. This time it went from May 20th until a week ago, and I had doxycycline and again a six day steroid set of pills. When it wasn't over with a little over a week ago, my Primary asked me to get a Sputum Sample. I dropped it off at their office, went away for our anniversary for a week, and just got back. They called today and said the culture had a lot of Haemophilus Influenzae, and referred me to call an Infectious Disease doctor. I just called but don't have an appointment yet; they want to see the lab report which I faxed to them.
I'm asking for input on our site because I did my usual Google research, and saw some scary things about Haemophilus Influenzae; especially, when it is what mine is which is Beta Lactamase Positive. I read that it is one of two organisms that people with CLL can have much trouble with, but in normal people it lives in our upper respiratory tract and is kept in check. Those of us with CLL however can be endangered by it.
Any input for me from our group?
Carl
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wizzard166
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Hi there Carl, I’m currently struggling with an unknown respiratory virus. I was recently in Turkey on a coach tour and nearly all on the coach caught it. I wore a mask as much as possible, but in saying our goodbyes to everyone I succumbed to the virus. The symptoms sound very similar to what you have mentioned. It started with a terrible sore throat, loss of voice, runny nose, conjunctivitis type eyes, fluid in the ears, and horrendous cough. I was initially given Augmentin Forte, antibiotic eye and ear drops, Bisolvyn Cough Mixture, Dymista Nose inhaler, Ventolin puffer. Despite a very slight reduction in symptoms, it has still lingered on. I have had several visits to the GP and an E.N T Specialist. I have had it now for six weeks, with very little improvement. Today the ENT Dr started me on high dose oral Prednisone for seven days, titrating the dosage. Here’s hoping it will get on top of it. I had negative RATs and Neg PCR for Covid, Influenza A and B, and RSV. I wondered if they might do a sputum culture, but so far, it has not been mentioned. I’m currently having monthly IVIG infusions too. Hopefully you will soon have an appointment with Infectious Diseases Specialist. Wishing you all the best. Please keep in touch if you have anymore info. 😊
Thank you Indie for the input, and I have a feeling your organism is the same as mine. I'm a lot better now and perhaps over the hump for now with this particular bug; however, it is a true danger to those of us with CLL. It is totally resistant to many of the typical antibiotics they treat for more normal infections. I found an article that points out the danger of Haemophilus Influenzae specifically for CLL patients. Here is an article that specifically talks about this: mdpi.com/2077-0383/8/6/861
If in fact your organism is this particular bug, there is only a few types of antibiotics that would work. I found this information on those antibiotics in the Merck Manual:
Meningitis must be treated as soon as possible. An antibiotic—usually, ceftriaxone or cefotaxime—is given intravenously. Corticosteroids may help prevent brain damage.
Epiglottitis must also be treated as soon as possible. People may need help breathing. An artificial airway, such as a breathing tube, may be inserted or, rarely, an opening may be made in the windpipe (a procedure called tracheostomy). An antibiotic, such as ceftriaxone, cefotaxime, or cefuroxime, is given.
Other infections due to Haemophilus influenzae are treated with various antibiotics given by mouth. They include amoxicillin/clavulanate, azithromycin, cephalosporins, fluoroquinolones, omadacycline, lefamulin, and clarithromycin.
Carl, if the sample is still in the lab, see if MIC's can be run on it. Arrange to get a sample to a lab that does MIC's. The ID doctor would likely order that. I have had to drive samples to a lab to drop off, my docs in-system lab (Labcorb) does not offer them. lf there is a university or large health care system near you, they likely have the ability to either do it or easily send out to have this done. If you are anywhere near Buffalo, NY the Pharmacokinetics Institute at Millard Fillmore is arguably the best in the US.
If your insurance won't pay for MIC's because any labs doing them are not approved, consider spending the money to get them done. Knowing this information about the bug that's specifically inside you, instead of averages based on how this bug acts in population averages, is the highest standard of care. If your insurance initially denies, argue back that you are immune compromised/have CLL. According to physician's CME training, the risk of antibiotic resistance can be high, so in immune compromised people we really must have MIC's.
If the sample is tossed, see if your GP can order culture/sensitivity with MIC's to have ready for the ID doc. Mine did this for me, when I had the recurring MRSA. I figured the ID doc would want them, and I was correct. Having the MIC reports ready at my initial ID appointment moved things along faster.
Thank you Sofia. I'm sure the sample is already gone, because the report was available online on July 6. The Infectious Disease doctor's office called today, and I'm going in for my first visit at 1pm.
I live in South Florida. It rang a bell however when you mentioned the Millard Fillmore. When I was very young I was employed in Hospital Administration in Buffalo. My last position was Assistant Director of the Erie County Medical Center (Formerly called the Meyer Memorial). I started in a small Hospital in January '75, moved up to the job at the ECMC and left in January '79. I have fond memories of living in Buffalo.
Hello Carl, I’ve just finished a year of V+O and basically had repeated infections with Haemophilus influenzae throughout. Symptoms of sore throat, severe headache, sinusitis and productive cough. I coughed from start to finish of the treatment. Repeated prescriptions for Doxycycline, only completely cleared now I’m off treatment. Hope you feel better soon. Carol
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