I've been acutely ill for the last almost two weeks (ill with lyme/bab/bart for years but started treating in oct 2010). It started after i got home from a weekend trip where i drove 8 hours there and back by myself.
started with what felt like the flu, sinus infection and upper respiratory tract infection. High fever, diarrhea, everything.
it started to subside a bit so i went back to work, except my lungs started to hurt a little so i went to a local doc who prescribed a Z pack and inhaler. My LLND said go ahead with Zpack but no inhaler (steroids)
Yesterday I had 1 small amalgam filling replaced but binded with DMSA and some other chelators. shortly after finishing with that (3 hours or so) I started to get the chills. took a bath and my fever spiked to 104.6. I took the first dose ZPack and got so nauseated i felt like i must go to the ER.
i vomited on the way there and that helped me feel a little better. Once I got there though my lung pain shot up, felt like i was being crushed from all angles. they gave me pain killers but as soon as i got home not even an hour later i had to go back because the lung pain had intensified so severely that i couldn't breathe.
they found nothing in the x-ray, nothing in the blood draws, no flu, no strep. just an 11.9 WBC suggesting a bacterial infection in the lungs.
does anyone have any suggestions? thoughts? i am so miserable i can't stand it. can't stand it. want to throw up but i'm so afraid that it'll make things hurt again
Posted by FYRECRACKER (Member # 28568) on :
forgot, they gave me 1 gram IV rocephin which i've never had before
so nauseous from these pain meds but need them otherwise my lungs feel like i'm being run over by a cement truck.
it's vicoprofen. vicodin meets anti-inflammatory ibuprofein i have percocet and tramadol, and OTC MotrinIB.
Posted by 17hens (Member # 23747) on :
I have no words of advice but I am sitting here praying for you, friend. So sorry.
Posted by Lymetoo (Member # 743) on :
Pleurisy?? Did they even consider that? Usually they can hear it with their stethoscope, but a green dr might miss it.
Hope you find an answer. They really should have kept you until the pain was under control.
Posted by philly78 (Member # 31069) on :
Were you discharged? Or are you still there?
Flu swabs are unreliable. I have been told that by the docs I work with. Just sayin'.
I'm sorry you're going through this. Anyway you can get your doc to write a script for zofran? Or if your still there ask for some?
It works really well with nausea and no need to swallow another pill as it dissolves under your tongue.
I hope you feel better soon.
Posted by FYRECRACKER (Member # 28568) on :
discharged, in so much pain after the anti-inflammatory wore off i was back in 1 hour. they loaded me up with iv pain killers and gave me a breathing treatment and sent me home again.
they didn't check for pleurisy i will look into that. for a local doc, he was semi-familiar with lyme and at least seemed interested in helping and open minded.
they also put something in my IV (could've been zofran) for the nausea, but obviously that doesn't help for long. will look into that. for now i have ginger chews and my bed.
thanks for the replies so far. my mom stayed home with me so that way i don't need to get out of bed.
if there is a silver lining, i hope that whenever it is i get better that i will never forget how much agony we go through as lyme/babs/bart patients (and the other co-infections). I really didn't think treatments would be as bad as i read about online and in the books. but now i understand.
thanks for the support and keep any suggestions coming if there are any others out there.
Posted by Lymetoo (Member # 743) on :
Does the pain increase when you breathe more deeply or get out of bed? Sharp knife-like pain?
I had pleurisy at age 5 and I STILL remember the pain!
Posted by FYRECRACKER (Member # 28568) on :
The pain is a constant crushing pain all over, doesn't matter if i'm in or out of bed or breathe deep or shallow. that's when i'm not on pain killers of corse. almost like it starts in stomach/spleen/liver and all the way into lungs and even into neck and head.
during xray they made me breathe deep and i got nauseous and dizzy.
my lyme doc said she really thinks i'm herxing that bad from the byron white's A-BABS formula that i just started. and now that i think of it, the chills and fever started after my evening drop (YES, singular drop!!)
but still.... i got sick last week Sunday, and I didn't start my drops until Monday or Tuesday. its really hard to tell what this is.
Babs can live in the lungs right? i think this is the worst of all the infections i have.
Posted by LymeGoAway (Member # 25041) on :
You might also ask about something called Bornholm disease.
It's caused by the coxsackie b virus. Symptoms include chest pain, upper abdominal pain, pain that worsens on deep breathing, flu-like symptoms (GI and respiratory), fever, headache and rib muscle tenderness.
Posted by lpkayak (Member # 5230) on :
i don't know-i've never heard of a herx like that
but i haven't heard of the byrons white thing either
make sure you don't miss something else by blaming it on lyme
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lpkayak:
make sure you don't miss something else by blaming it on lyme
- true
Posted by FYRECRACKER (Member # 28568) on :
i believe coxsackie popped up on an EDS scan at one point long ago. I will look into that.
i got some zofran today, seems like it upset my stomach but it could've been the pain coming back i'm not sure. i'm a mess and i feel like i'm not in the care of anyone that knows what they are doing. still feeling nauseous even after zofran. don't know what to do anymore i have so much nausea but id rather have that than the bone crushing chest pain. and I HATE nausea.
i almost want to ask to be admitted to the hospital overnight or something. this is not like me.
Posted by momindeep (Member # 7618) on :
It is okay to ask to be admitted to the hospital.
Posted by FYRECRACKER (Member # 28568) on :
i just don't know what they can do for me besides give me Liquid IV's and maybe IV rocephin. my lungs actually felt worse than before I went in yesterday so I don't even know if what they did helped or made it worse. I am so lost.
All I know is whatever is going on is not good.
Posted by philly78 (Member # 31069) on :
I'm surprised they even discharged you.
If you are really feeling that bad, there is no shame in going back and asking to be admitted. I work in the ER and let me tell you....that happens more than you would think.
It will usually say on your discharge instructions to go back if things get worse. Well....seems like your lung pain is getting worse.
YOU know your body best....not the docs and not the nurses. As someone else already stated, you don't want to miss something by assuming it is lyme/herx.
I hope you feel better soon. Keep us posted.
Posted by FYRECRACKER (Member # 28568) on :
thanks everyone. hospital stays are so expensive i can't believe the amount they charge. i have health insurance but my deductible is $5K.
maybe I'll go throw up or lay down and if it persists after that I think I'll admit myself.
Posted by METALLlC BLUE (Member # 6628) on :
Sounds like a septic bacterial infection, possibly PICC related, though unknown. Given the pain in the area, it's likely an inflammatory response affecting the lining of the chest cavity or the lung itself. An inflammatory response may affect nerves without provoking a clinical finding. In English: Inflammation may irritate the nerve, but no scan or observation will identify it. I could be wrong, but it really does sound like pleurisy.
Either way, they gave you antibiotics and anti-inflammatory drugs. Since the pain subsided with the anti-inflammatory drugs, we can assume the pain is driven by inflammation and if an infection is causing it, hopefully it will be sensitive to the antibiotic they chose to give you. Hopefully within the next 24 hours you'll know.
I hope you're able to figure it out.
Posted by seibertneurolyme (Member # 6416) on :
Several things -- first, please go to the ER next time when your fever goes above 102. For adults it is really not safe to wait to see if it will go higher than that. You don't want to end up with permanent brain damage.
Next -- you can negotiate with the hospital later about payment -- even if you have insurance. Most hospitals will offer no interest payment plans and often they may lower the amount you owe if you provide documentation that you can't pay based on income.
Yes -- theoretically you could run a fever that high with babs. But I personally don't think the Byron White formulas are really that strong. I have read about the ingredients, but hubby has not tried that particular formula so we do not have first hand experience.
I would probably be looking for some other bacteria as the cause of the lung pain.
Hubby is currently in the hospital (again) and his nurses were getting really concerned last night when his fever spiked to 102.7 He had already had tylenol and is on IV antibiotics. They called his doc and asked what to do if the fever went higher. Instructions were to try tylenol suppositories.
Hubby got some test results today which explain why he is still running fevers. His blood slide from Clongen (done a week ago) showed a blood borne protozoa which is probably babesia (PCR testing not available yet) and the hospital had stopped his babs meds due to the positive blood cultures for a bacteria. So he has both a bacteria infection and babesia which are both active at the same time.
So as someone else said do not always assume it is tickborne, but also do not ignore the tickborne component.
Hope you feel better soon.
If you have some resveratrol -- then you could try that. Here is a link showing that that supplement could potentially prevent or lessen the severity of pneumonia.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by Pinelady (Member # 18524) on :
Hyper reaction? I would try a few doses of Benedryl every 3 hrs. to see if that helps. I know it sounds crazy but I just went thru this crazy hyper allery...The Benedryl got me thru whatever it was....
Posted by FYRECRACKER (Member # 28568) on :
No Piccline here. (if thats what u were thinking Metallic?) Yesterday was my first and only rendezvous with IV Rocephin. My LLND was happy they gave it to me and they both suggested that I continue with the Z pack, but I am so sensitive in my tummy I just don't want to throw it up.
No pneumonia (thats what they say). My chest xrays were clear. Will consider the benadryl.
right now I am so tired, I'm hoping i sleep through the night. im afraid i will wake up in the middle of the night and need to get to the hospital or will have the severe lung pain again
All the doc at the hospital said he could do is recommend i stay on top of the pain. my stomach cannot handle all this right now. and it doesn't seem like the anti-nausea Zofran is working. I was able to keep half a sandwich down and i got a tiny bit of water down, but I could totally go start coughing, gagging and stick my finger down my throat to make me get anything out. seems like that would make me feel better.
this is absolute hell . Thanks all for helping, these suggestions are truly helpful in this confusing time for me.
Posted by little_olive (Member # 28063) on :
Be VERY careful taking Zithro with Zofran, it can mess up your heart rhythm!!!
quote:Originally posted by FYRECRACKER: Yesterday I had 1 small amalgam filling replaced but binded with DMSA and some other chelators. shortly after finishing with that (3 hours or so) I started to get the chills.
Has anyone ever mentioned that you're supposed to be on antibiotics before dental work? It's recommended for even routine dental work like tooth cleanings, for people who have heart defects or a hisotry of endocarditis, even...
This is because dental work causes a massive flood of bacteria into the bloodstream! Please research this, I'm near positive that is what sent you over the egde!
I've had this happen and so has a friend of mine. We DID take antibiotics before our dental procedures, but it just doesn't matter; we still had the worst day of our lives in the following hours and especially the next day. People with these lyme/babs/bart infections + dental work, they just do not mix, not at all, ebcause we are ALREADY so overloaded with bacteria.
I think METALLIC BLUE is right, you were having sepsis, i.e., bacteria in the bloodsteam...caused by the dental work. A 11.9 WBC doesn't indicate a lung infection, it indicates a massive immune response to an intruder, and is one of the clinical markers of a septic reaction.
I have no idea what to say to make this better for you, but maybe knowing what most likely initiated it, will help a little.
little olive
Posted by Rumigirl (Member # 15091) on :
For heaven's sake, it does sound like you should be in the hospital, and they should not have discharged you! Much as any of us wouldn't love to be in the hospital.
With a fever that high, the lung pain, etc., that' not something you can likely handle on your own. (I know, I try to handle most things on my own, too, but there comes a point where it isn't safe).
It does sound like either a lung infection or what little olive said or both. You may need IV abx and pain and nausea meds and whatever nutrition supplied via IV. Be careful of toughing it out on your own.
Worry about paying for it later. You could certainly negotiate something later. $5K deductible---ouch!!
Let us know what happens.
Posted by philly78 (Member # 31069) on :
How are you feeling today? Any better?
I'm still surprised that the ER discharged you. It kinda ****es me off! You just don't send someone in your shape home to fight this on their own.
When the x-ray showed nothing, they should have done a CT-scan of the chest and admitted you for at least 24 hours. I just don't get it.
Question...now that people are mentioning sepsis. Did they even draw blood cultures on you? With that high of a temp, they should have.
I hope you're feeling better today.
Posted by FYRECRACKER (Member # 28568) on :
they did draw blood cultures, yes.
i made it through the night and am feeling a little better. eating crackers and having some sparkling water.
i am trying to make my way in to a new MD in town that i've heard is at least a little more open minded. waiting to hear if he will accept me. i didn't tell them about lyme, only babesia since thats what i'm currently treating for. I said i have a specialty doc treating me for fibro. the docs throw everything in that category, i think i can too!
i am coughing more today and am less nauseous. i'm hoping i can get in to a doc that will understand i need some IV rocephin and liquids.
finishing the Z-Pack is an option but gosh, i'm gun shy. dont know if it will make me nauseous again or not.
even tho the ER doc was nice, its obvious they just plain didn't know what to do for me. i applaud him for the IV rocephin and so does my LLND, but 1 gram? i think they can give me another one.
and, even tho i feel better now, i'm hesitant to believe i am better given the last 2 weeks. im up then down, up then down.
you guys are great, really helping me come up with some good questions for whichever doc i see. if i cant find a competent one in the clinics i'm going to the hospital.
Posted by philly78 (Member # 31069) on :
Well, if you are septic, they should call you when they get the results from the blood cultures back if it shows anything. It takes a couple days to see if anything grows.
We always give zofran and zith together at my work and it has never been a problem. But as always, any drug or combination of drugs can cause side effects...potentially severe.
Good luck with the new doc!
Posted by METALLlC BLUE (Member # 6628) on :
It seems pretty clear to me that you're going to be ok, but I'm sure this has been a very painful thing to go through.
Hang in there.
Posted by FYRECRACKER (Member # 28568) on :
thanks. pain meds are wearing off and the pain is coming back. i'm sure i'll be ok eventually but i'm worried it won't be in time for my trip. i have to be gone for a week and 2 days on my own. flying and driving. doesn't help that i'm terrified of flights.
i don't want to be living off pain pills.
maybe i'll give the hospital a call today to see if anything grew in the culture.
Posted by Lymetoo (Member # 743) on :
Glad you're better today!
I wish you were a LOT better.
Posted by Babbs (Member # 27887) on :
Pain management is a valid criteria for admission (GRG: PG-PM) per the guidelines if: You have failed outpatient treatment attempts. You also qualify under Infectious Disease of unknown origin (M-160) and for intractable nausea and vomiting (M-370). Pick one.
If they dont want to admit you ask why and ask what criteria they are using Milliman or InterQual. The ones I quoted are Milliman Criteria.
If you need to be there go-we are the last ones to go and you know that.
H=I hope for your returned health!
Posted by FYRECRACKER (Member # 28568) on :
thats awesome Babbs. thank you.
I went to the new doc. He wanted to order all the same sh*t the ER docs ordered. I said no thanks to the xrays and throat swab.
My ALT was 300 something (something to do with the liver?) and another liver count was over 200. whatever they were, they were in the "critical" category according to their medical standards.
So the doc ordered a CT scan. drinking the lovely vanilla Barium Sulfate drink now and return in an hour for the scan.
Man I hate doctors sometimes.
Posted by karenl (Member # 17753) on :
Hope you get better soon, this is really high and also your white blood count showed you are very sick.
If I remember you had done parasite medication a while ago? This could have elevated the liver enzymes a bit - I am not a doctor - but maybe it is important. Could it be in connection with this topic? Maybe you need to mention it.
To repeat the throat swap would not harm you, I would agree repeating it.
Posted by Lymetoo (Member # 743) on :
That IS high for the ALT. Hope your liver is OK.
Posted by philly78 (Member # 31069) on :
Were your liver enzymes that high when you were in the ER?
Posted by FYRECRACKER (Member # 28568) on :
funny they didn't check my liver enzymes when i was in ER.
The CT Scan revealed no problems with liver or gallbladder. They also did one for my lungs and there were no blood clots, so the only answer left (duh) is inflammation.
the doc ordered liquid IV's over the weekend, just got back from one. He will retest my liver enzymes again on Monday. If they are still high he is recommending a Hepatitis panel. I'm pretty sure i don't have Hep A B or C. but guess whatever he wants to do?
and yes...i did a 14 day parasite treatment for Trichinella followed by a 13 day H. Pylori treatment which was incredibly hard on me. I haven't been the same since.
I am sure the fact I was living on pain killers the day before i got that test done today (liver enzymes) didn't help the matter.
Still. HE HAS YET TO ADDRESS MY LUNGS! I even mentioned Pleurisy and he said "possible" but he seemed distracted by my liver enzymes.
Anything I can do to help my liver mellow out? My lyme doc wants me on the Zpack but is that really a good idea with my liver like this? (She was on her way out of the office and said to just do whatever the local doc says)
the local doc says another dose of rocephin would be irresponsible.
another note...my WBC today was 6.6... what the? perhaps i got a couple tests confused.
Anyway..yes i'm feeling a little better. I am home but I am still having difficulties breathing in w/o feeling like coughing. haven't had a bm in 2 days, im afraid to take a bath cuz last time i did i got a crazy high fever. im afraid to practically move.
ironically when i was in the hospital just now getting my IV, we watched Medical Mysteries about a woman (my age) who was very pretty and modeled who got lyme disease, mistreated, and who is now a successful 29 year old reporter living in San Diego (I used to live there!) it was kinda cool to see. made me cry a little. i was so happy her lyme hell is over. i hope ours will be too some day soon.
Posted by Lymetoo (Member # 743) on :
The combination of pain pills and the Rocephin may have made the enzymes go up.
And the WBC may be down since you had the Rocephin and you are getting better.
Better get some magnesium into you for the constipation or something else! Do something before it gets really bad!
I think that is Brooke you're talking about .. the newscaster in San Diego.
Posted by RDaywillcome (Member # 21454) on :
God Bless You for being able to write in such a state! Hang in there, we are praying for you.
Posted by FYRECRACKER (Member # 28568) on :
yes! Brooke. she is awesome. Our day will come too ;-)
thanks for everything you guys. i just want to get well enough to enjoy this trip next week, but if god has other plans, so be it.
Posted by lpkayak (Member # 5230) on :
milk thistle is good for liver but you are so mixed up now i would be very careful about putting anything new into the mix
hope you have a good night
Posted by FYRECRACKER (Member # 28568) on :
My CT scan came back for my chest and abdomen area ...all normal except for fluid in my pelvic area and enlarged ovaries.
Wondered if any women (or men) have any experience with this.
Posted by METALLlC BLUE (Member # 6628) on :
Your liver enzymes likely went up quickly between the hospital and now as a result of all the medications you've been given. You'll only be using them a brief time -- perhaps you've even stopped by now, so those numbers will return to normal. Get yourself some Milk Thistle, and drink plenty of water. Your doctor should approve the Milk Thistle, but it's a very safe treatment FYI.
Rest is key, get that inflammation down. It'll go down on it's own if you can manage to sleep.
Is your temp down now?
Posted by FYRECRACKER (Member # 28568) on :
yea temp is down but goes up to maybe 99.5 here n there (my normal)
i took no pain killers/anti-inflam yesterday. All i took was Zofran in the morning so I could eat. It helped.
Other than that, I think today I will finish the 4 days of my Z-pack. hopefully this will be ok if i just stay home and rest.
The only thing bothering me is my lungs and the coughing (inability to cough up anything significant). But my lyme doc has PEKANA remedies on the way to open my lungs up.
I stopped A-Babs for now until i level out and get done with the Z-pack.
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