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

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

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.

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

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.

Has anyone mentioned that possibility to you?

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

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

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.

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