LymeNet Flash: Pneumonia or another LD symptom misdiagnosis

This is topic Pneumonia or another LD symptom misdiagnosis in forum Medical Questions at LymeNet Flash.

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Posted by Punkie (Member # 5402) on :

Over the last 3 weeks I felt like having really bad flu. Fluctuating fever from 97.5 to 103.7 and really low oxygen saturation (upper 50's to 60% although I'm half of the day attached to 4l/min oxygen).

On Monday the chest pain got me call 911. Third visit to the ER in last 2 weeks. This time the doc said I have Pneumonia, added Levaquin 500mg/day to my Zithromax 500mg/day and told me to take a lot of Motrin to decrease the severe lung swelling the CT scan showed.

I can'n move at all, can't recline, even to touch my rib cage is so painful. This is going on for 2 weeks and I missed my 3rd apointment with LLMD (Dr. C,MO).

So I'm still not under LLMD care, as I can't travel like this.

Next week I have an appointment in NY hospital for Joint Diseases for Pain management evaluation and 18 day in-patient program.

Does anybody got pneumonia while taking IV Rocephin 2g plus 500mg Zithromax orally?

It seems quite strange to me. Thangs God I don't have any cough, that would kill me. Even a small sneeze seems right now deadly.

I'm so frustrated, as every time I have initial apointment with LLMD, I have to cancel due to some stupid something (new blood clot, unconciesness - woke up 3 days after my apointment, etc.). This is my third time.

It start to feel like some higher power is telling me not to go. I'm just hallucinating from all the pain and fever?

How can I get the proper treatment, when I can't get there - my doc won't precsribe oxygen for the flight as he doesn't want me travel in this shape, airline's doc would never agree to have a pneumonia patient on board with recycled air for other patients.

But is it really pneumonia? How should I know? Yesterday's e-mail news even said that LD can mimic pneuminia - that's the first time I saw it in medical document.

I'm so confused what to do. Next to my bed is tons of supplements, abx, rife machine,MP prescriptions, pain meds with no effect, all kind of woo-doo things. Who is supposed to tell me what to do?

I'm sorry to cry on your shoulders, but there is nobody in my life righ now, who would understand.

Please let me know, if you have some experience with pneumonia while on abx, which are the first choice to therat it.

Thanks and wishing you better day than is mine.

Punkie

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Posted by Lenny777 (Member # 5452) on :

Pneumonia with no cough? I had Pneumonia one time and I almost coughed myself inside out.

Posted by treepatrol (Member # 4117) on :

You need a LLMD .

If your not coughing it could be swelling of the paracardial membrain which would make you feel like your lungs are full.

Posted by Laurie (Member # 159) on :

If you have a lowered cough reflex, I guess you could have a lung infection without coughing, maybe, since a cough is the body's natural response to getting stuff out of there? Anyway, the pain you've got sounds like pleurisy pain. But sure, you can get pneumonia while on abx. There are lots of different kinds of pneumonia, some viral. I had mycoplasma pneumonia, but before they knew what kind it was, they gave me Ceclor, which did nothing. After my doc gave me E-Mycin, I finally started getting better. At any rate I'm surprised at the Motrin for swelling. I know it's an anti-inflammatory, but didn't know it was for swelling. I think I would get another pulmonary doc's opinion - even good docs miss serious stuff. And don't worry about getting to the LLMD for the moment - you're already doing some good stuff with the IV and Zithro - you'll get there.

Posted by rosesisland2000 (Member # 2001) on :

Next week I have an appointment in NY hospital for Joint Diseases for Pain management evaluation and 18 day in-patient program.

And, you are going to do this BEFORE you ever see an LLMD? IMO, you could save yourself a lot, and I mean a lot of time and money, not to mention your health, if you would just make another appointment with Dr. C of MO and get the proper treatment for you LD.

When you get to the proper treatment, then your pain will more than likely subside. Also, are you planning on telling those guys in NY that you actually have LD?

I wonder what they will say...

IMO, you are treating the symptoms rather than the disease when you go to that 18-day ordeal in NY.

While you may feel better with less pain, it (LD) will still be there and will continue to cause you pain...so why not treat the cause?

I'm confused...

Rosemary

Posted by Punkie (Member # 5402) on :

Thank you for all of the replies. I'm confused also.

Dr. C, MO has replied to my question about pain control. He is not pain specialist, he is in charge of treating LD only. No pain meds prescriptions should be requested.

If I would see some quick results from abx treatment, I would not be looking for any pain specialist (now I'm on 8 weeks).

I just don't want to spoil my efforts to treat LD. With up to 7 migraines a day, I can't keep anything down in my stomach, including plain water. At those days (about 5 every week) I can't take any oral meds or supplements.

Dr. C is not using IV meds, and most are not even available in IV form. I take Zofran for vomitting, but it's loosing it's effectiveness.Also on these days it seems, that none of the meds are absorbed.

With the severe pain (fm/cfs/migraine and tension headaches/chest pain/both knees with no cartilage left/back pain after 34 spinal taps/etc.) I'm unable to get up from bed, even for personal care. Trip to use the toilet seems harder than marathon I used to run.

I don't know what should I do first. After this week of this misterious pneumonia and pleurisy, I'm at the end of my will to live. Last night I got another attack of the pain - lasted over an hour (choking due to unability to take a breath, shaking - fever F103.7, you get the picture), it was the fourth one that day. So I wrote my family a last note, beeing sure I won't live till the morning. I took multiple doses of Fentanyl and Klonopin, and couln't even fall asleep, so nothing got absorbed. I can't even kill myself.

The nearest pulmonary doc is 3 hours away and I can't even move in bed. I don't think I should be begging them for an appointment if I can't get there.

Sorry for such a long message. I just don't know, what to do, as I don't have the experience as most of the people on this forum. I'm trying to do my best, but it's not enough.

Thank you for your support. I really appreciate it.

Punkie

Posted by circuspeanut (Member # 6154) on :

Punkie,

With such severe pain and mobility symptoms (whatever they turn out to be from) it sounds like a brief in-patient stay would be a good idea.

It will at the very least give you some rest and relief from the pain to get your head clear for later treatment decisions. You won't have to worry about preparing food, etc, and they can give you IV feeding if necessary. This kind of care seems pretty critical for you right about now!

Take really good care, please don't forget that you are a precious human being that should not be lost to this world. You WILL get this figured out!
hugs
Peanut

[This message has been edited by circuspeanut (edited 24 September 2004).]

Posted by cbb (Member # 788) on :

If you're on IV Rocephin, Zithromax & Levaquin, do you think you could be having a herxheimer reaction?

If you decide to go to New York for the pain management program, do you think they will prescribe steroids for any of your problems?

Maybe there are exceptions for emergencies, but as a rule, Lyme patients should not be given steroids because they suppress the immune system & give a big advantage to the spirochetes.
Didn't know if you were aware of that.

So sorry you're having such a rough time.
I hope you can get to Dr C soon.

Posted by Tincup (Member # 5829) on :

It sounds like a herx to me.

Has anyone mentioned that possibility to you?

Posted by caat (Member # 2321) on :

yup, sounds like a herx.

And yes, Punkie, a few stronger pain meds would be a very nice thing! Different kinds of pain meds have a limit to the amount of pain they will effect.

tell them you're having a Jarisch-
Herxheimer reaction. OR better yet ask your LLMD to call the pain clinic and explain what it is. They may not know. Here's some more information on herxes;
http://www.angelfire.com/biz/romarkaraoke/Herx.html

or better yet search for "herx" at the search box at the top of the board.

Posted by Carol in PA (Member # 5338) on :

Ye gads, Punky, you are having a miserable time of it.

Despite all of your physical problems, you sound quite lucid.

Hmm...I thought the treatment for pleurisy was steroids.

Question for those in the know: Would a week of steroids exacerbate the Lyme?

If you have severe lung swelling, that should be treated.

I thought that pneumonia caused fluid collection in the lungs, not swelling.

I just read yesterday that Rife machines don't work well when the patient is taking antibiotics.
Just a thought.

You REALLY need someone who can evaluate you and see the WHOLE picture.

Carol

Posted by Laurie (Member # 159) on :

Yeah, I was confused about the lung swelling too -- never heard of that in pneumonia, but then I'm not a pulmonary specialist. I will say that when I had severe pleurisy, which I still get from time to time but less since treatment, the best relief I got was from an old-fashioned hot water bottle. I mean really steaming hot. (Make sure the cap's on tight and the thing's not over full, though -- mine burst in bed one night and burnt my arm!!) That, plus anti-inflammatories. (And since this was when they still thought I had lupus, sometimes they did give me steroids for it. Because they are an immune supressant, steroids aren't recommended for Lyme, of course, but sometimes there are co-conditions for which they are. Anyway, anyone who can't keep anything down including water should be put in the hospital!! If your doctor won't agree with this (and, mind-boggling as it is, we all know there are docs who won't) then you need a medical advocate -- a friend or family member maybe? Incidentally, if the fever's not from infection, I'd say it's from Herxing. Good luck.

Posted by Punkie (Member # 5402) on :

Thank you for all the suggestions. It makes me more confused.

After a week I finaly made it to the bathroom to take a bath and brush my teeth. How did I get to such a point?

I don't know too much about herxing, as I have the same symptoms for almost 10 years.

It just called every time something different. My first dx was stress and depression which turned out to be a meningitis, "female" headache was accualy encephalitis with hydrocephalus requiring shunt.

Psychological counceling was recommended for 3 blood clots in my brain. I was dascharged from a renowen head pain clinic with "enxiety", which were 2 pulmonary emboli. Recently physical therapy was precribed for my blood clot right next to my heart (half inch)! as my left arm got num.

I'm constantly at my doc or in the ER. Dx: hypochondriac, narcotics dependent. Two month ago I took my psychotherapist with me to the doctor one day, next day she brough me to the ER. She doen't take Medicare and my secondary insurance paid 20% out of $5.800,00 she charged me for 4-5 days. I would love to have her with me, but can't afford it.

Nobody reads any of my 3 psychologist's letters, that clearly state, that I have a pain disorder and I'm not a narcotics seeker.

So I really don't know what to do.
punkie

Posted by Carol in PA (Member # 5338) on :

"So I wrote my family a last note, being sure I won't live til the morning. I took multiple doses of Fentanyl and Klonopin, and couldn't even fall asleep, so nothing got absorbed. I can't even kill myself."

Punky,
It's obvious that things are spinning out of control, and you feel like something the cat dragged in. (Um...please ask the cat to drag it back out again.)

What would happen if you discussed your suicide attempt with your psychologist? Would anyone take you more seriously?

Carol

Posted by Laurie (Member # 159) on :

Oh - forgot to say this last post - 7 migraines a day doesn't sound so much like migraines and it does cluster headaches. They're vascular like migraines but they come in clusters that often feel like one big headache that can last a couple of weeks. They're one-sided, but don't have the "aura" that warns of migraine. They usually come on suddenly, and they are much more painful than migraines. My record for cluster headaches is 17 days. They're known, in fact, to trigger suicide in some sufferers! Supposedly men are more prone to them but I don't know. It's ice and many ibuprofen, plus dipping my hands in very hot water to draw the blood away from the brain and into the extremities, that have helped me, also acupressure but not professionally done, just by a friend or family member - there's a pressure point near the wrist.

And, question: have you had that fever, too, for 10 years?