First, I just want to say that while I have been lurking, I have learned alot from you all. Thank you so very much!
I suppose, being new to lyme treatment, although I've probably had it 17+ years, I haven't felt that I have alot to contribute, although I know that I should post a little. You all are just so wise!
Anyway, I suppose now is the perfect opportunity to start.
I started on antibiotics late October of last year with one of the well known LLMD's. I have a positive clinical diagnosis and positive Bowen. I am non-CDC positive with the western blot though, but positive for lyme on several bands.
Well, everything was going as planned, though still tough, as I cycled through doxycycline, ceftin, and was currently at full dose of zithromax, until I developed pneumonia last Saturday, which precipitated an ER visit by ambulance on the following Monday. At the time, I had a high uncontrollable fever, pounding headache like never before, major fatigue and weakness, and nausea and vomiting.
I had no idea I had the pneumonia until the x-ray was complete and the ER doctor told me that she found it in my upper right lobe. At that time, I was passed off to a physician assistant, who advised me I was going to stay the night and take Levaquin.
I explained to her that I had lyme and horrible herxheimer reactions to antibiotics, so I needed as safe of one as I could get. I even had her call my LLMD and although he didn't recommend the Levaquin, she was insistent on prescribing it. At that time, I figured I had no choice, so I insisted on at least being able to take it orally, instead of by IV, in case I had a horrible herxheimer reaction.
Once I finally got to my room, I was passed off to a hospitalist, as my primary care physician does not do hospital rounds. He insisted I take the IV, but I continued to refuse, pleading my case, as before. He ended up getting very nasty, but, nonetheless, gave in to my demands.
So, I take a 500 mg pill, which, within hours, I start experiencing major problems. My symptoms included extreme restlessness/agitation, major increased weakness in my extremeties, a bad burning head and spine, and really bad nausea, vomiting, and diarrhea.
I refused to take anymore of it, for fear of it literally killing me. This further made the hospitalist mad, so he decided to just send me home and with the same kind of pills. I was literally pushed out the door, although I had vomited heavily within 30 minutes and was told to use a phenergan suppository within 60 seconds before my departure, which I did.
I came home, very very very sick, saw my home health nurse that day, who knows me well, and got myself an appointment with my primary care physician the following day, whom those at the hospital never even waited to hear back from as to what to give me, I was later told.
While it was everything I could do just to push to get to see him, I made it. He just told me to stay on my zithromax I was on for my lyme before, gave me a prescription for amoxicillin, and told me to get another chest x-ray in a week or so, and come back and see him then.
He also said that he thought I had viral, not bacterla, pneumonia, but wanted me to take the antibiotics as a precaution, even though my fever and headache are gone. Needless to say, I have been so sick, sicker than I've ever felt in my entire life, that I've only been able to take a few small doses of amoxicillin without making myself worse. I guess it's a miracle I didn't have bacterial pneumonia, because if I did, I would probably be dead by now. At one point, I thought I was going to die and actually welcomed it, if that tells you how sick I was.
From there, I phoned my doctor at the FFC and my lyme doctor, trying to figure out what was going on and how I could get some relief. It was their understanding that I had a horrible reaction to the medication, as well as a massive herxheimer reaction. I was advised by my FFC doctor to rest and drink alot of fluids. My lyme doctor prescribed me a short course of prednisone and some neurontin, which have both helped me some.
It's been five days now since I took that pill and my head and spine have quit burning so much, as well as my brain fog has lifted some, and my headache and fever are gone. Also, my nausea and vomiting are better, but I am still suffering with it quite a bit. So far, I am only able to drink beverages and eat broth soups, as well as things like cheerios and applesauce. Anything with dairy seems to make my burning worse though. It still feels like my whole digestive tract has been burnt.
My worst symptoms are the weakness and restlessness/agitation I get in my arms and legs, although overall it is better. It seems to be really bad when I wake up, but as the day progresses, it lets up some. I am also having bright green diarrhea, several times a day, which I can't figure out why, since I'm not eating green foods.
I have tried taking activated charcoal, Burbur, bentonite clay, reduced glutathione, benadryl, brain b-12, xanax, oxycodone, magnesium citrate ( I read on the net where it helps to soak up the leftover chemicals from the medicine) and a hot bath to try to detoxify. I continue to have problems taking my supplements as before too, so I have stuck to only taking the medications that I know I just have to have.
So, for those of you more experienced than I, what just happened to me? Did I just experience my first real massive herx, along with central nervous system problems causing peripheral neuropathy?
The only thing that has ever come close to me feeling something like this is a couple of surgeries, but why then also?
Have you experienced something like this before or know of someone who has?
What else can I do about this reaction? Will it get better with a little more time?
I know that the medicine can cause central and peripheral nervous system problems. I read that it blocks the GABA receptors, so I assume that's where the restlessness/agitation is coming from and why the neurontin helps me, right? At least that's what I've read on the net.
Do you think that I would benefit from doing a neurotransmitter levels test and taking some supplements based on that?
I do know that the medicine is excreted via the P450 liver enzyme pathway and I know that mine is impaired. Could that have caused my reaction? Is this problem common with lyme too?
I've also read lots of horror stories with this kind of antibiotic, but the most concerning seems to be related to tendons, not what I'm going through.
I know this is long, especially for a first post, so I thank you from the bottom of my heart for taking the time to read this. I do hope that many of you that know way more about all this than I do will respond and at least, alleviate my fears, even if it is just going to take me a little time to get over it.
I don't know how you guys do it, but I have to honestly say that I would not wish this on anyone. As I am sure you already know, this has profoundly affected my life in ways that I could have never even imagined and some times it is not easy at all to deal with.
Your thoughts and opinions are greatly appreciated!
With much love...
your new lyme buddy
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi, jjeennnniiee
Welcome to Lymenet.
I'm sorry you went through all that, it's no fun going to the ER, but I'm so glad you already have a LLMD.
I have had very bad reations to cipro, first time I took it I ended up in the ER and the next time I got very bad tendon pain all over.
Here is a recent discussion about this class of antiboitics, I hope this helps some.
I know what you mean, it is not easy dealing with lyme or the co-infections, but it does get better with treatment. You are right it takes time and sometimes it goes very slowly.
Hang in there ok, and I hope you feel better soon.
posted
Levaquin is probably the only antibiotic hubby never herxed on -- with everything else he herxes with every dose.
Whether the pneumonia was bacterial or viral, my major concern would be your immune system. Sounds like you need some type of immune booster. Dr B recommends Reishi, but there are many choices.
Make sure you get copies of all labs plus the history and discharge summary and all doctor's notes. Need to request both ER and hospital records.
If you ask for all records -- you get 50 or 100 pages of useless info that you have to pay for included with the useful info I have listed. Depending on the hospital it could take several weeks or even a month to get copies of all records.
There used to be a thread on green stools -- couldn't find it when I searched. If this is a greenish yellow -- my guess would be that it is from bile.
I thought Ceftin and Levaquin were in the same class of meds? I could be wrong.
I am pretty sure there is a thread on the P450 enzyme system. Hopefully someone can locate that for you.
Would suggest holding off on neurotransmitter testing -- especially amino acid testing. Both could be affected by digestion problems -- especially amino acids.
So sorry for what you are going through.
Congratulations on standing up to the doc against the IV. This is difficult to do even when you are not so sick.
Take care.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
As you had a full case of pnemoniae, it could be that in addition to Lyme you may also have Chlamydia pneumoniae (Cpn). Levaquin is a strong protein inhibitor for the replicating phase of Cpn, and amoxi kills the Elementary Body phase of Cpn. The result is what is called secondary porphyria, which includes symptoms of hypersensitivity to light and stimuli, headaches, anxiety, depression, brain fog, nausea and GI disturbance, decreased pain threshold (it binds to GABA sites) and so on. Sound familiar? Check out info on Cpn at www.cpnhelp.org, and especially on secondary porphyria. Treatment is charcoal, to prevent reabsorbtion of fat soluble porphyrins in the gut. Another is glucose. 2-4 glucose tablets every hour can significantly reduce porphyric reactions for me. It blocks heme production in the liver, and porphyrins are incomplete heme byproducts. It seems to me that many with Lyme may also have Cpn as a co-infection, and that what is being mistaken as a herx is actually secondary porphyria (although that is not the only reaction to killing Cpn as endotoxin reactions, cytokine inflammation and apoptosis-- death of infected body cells-- are also part of the picture.
These do have more or less differentiated patterns, however. Calling things a global "herx" doesn't help us sort out what reaction is to what. As they are treated differently, it's useful to know.
Endotoxin reactions, usually fever, chills or a unrelenting feeling of cold and can't get warm, have both herbs and meds to counter this. Cytokine inflammation, manifest as muscle and joint pain and inflammation, is countered by other things.
I've already mentioned porphyric reactions and their treatment. Lots of info on the diff's at cpnhelp.
-------------------- Chlamydia pneumoniae seropositive, on Combined Antibiotic Protocol (CAP)for CFS/FM since 11/04 Posts: 11 | From Northern Ohio | Registered: Jun 2006
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bettyg
Unregistered
posted
quote:Originally posted by Jim K:
As you had a full case of pnemoniae, it could be that in addition to Lyme you may also have Chlamydia pneumoniae (Cpn).
Levaquin is a strong protein inhibitor for the replicating phase of Cpn, and amoxi kills the Elementary Body phase of Cpn.
The result is what is called secondary porphyria, which includes symptoms of hypersensitivity to light and stimuli, headaches, anxiety, depression, brain fog, nausea and GI disturbance, decreased pain threshold (it binds to GABA sites) and so on. Sound familiar?
Check out info on Cpn at www.cpnhelp.org, and especially on secondary porphyria.
Treatment is charcoal, to prevent reabsorbtion of fat soluble porphyrins in the gut.
Another is glucose. 2-4 glucose tablets every hour can significantly reduce porphyric reactions for me. It blocks heme production in the liver, and porphyrins are incomplete heme byproducts.
It seems to me that many with Lyme may also have Cpn as a co-infection, and that what is being mistaken as a herx is actually secondary porphyria
(although that is not the only reaction to killing Cpn as endotoxin reactions, cytokine inflammation and apoptosis-- death of infected body cells--) are also part of the picture.
These do have more or less differentiated patterns, however. Calling things a global "herx" doesn't help us sort out what reaction is to what. As they are treated differently, it's useful to know.
Endotoxin reactions, usually fever, chills or a unrelenting feeling of cold and can't get warm, have both herbs and meds to counter this.
Cytokine inflammation, manifest as muscle and joint pain and inflammation, is countered by other things.
I've already mentioned porphyric reactions and their treatment. Lots of info on the diff's at cpnhelp.
Jennie, you mentioned something about sick to your stomach, etc. Have you had food allergy testing? Sounds like you may have CASE-IN INTOLERANCES!
I recently found out I'm allergic to cow's milk, cheeses, egg whites, garlic, and to gluten...wheat/rye!
CONGRATS on standing your ground with the docs in ER/hospital! That's your perrogative, sp.
2nd Bea's comments about getting ALL NOTES/LABS/ETC. for each visit there as well as ALL PCP/LLMD visits, labs, xrays, etc.
Best wishes, and great job of breaking up your paragraphs for us neuro lymies like me; I had no problems whatsoever. Sorry you've been so sick. Bettyg
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I had experienced lung(pneumonia/bronchitis)issues in my treatments early on with an IV of ceftriaxone.
I was sent to hosp...and iv'd levaquin before I knew what was happening...then later albuterol treatments.
I think jimK is correct in his post...OR the BB is acting like CPN in symptom...
The ducks I saw in the hospital could'nt decide EXACTLY what was my problem...pneumonia or bronchitis...viral or bacterial...??
The levaquin seemed to clear it up for me however...
Now when I get ceftriaxone IV I try and follow it up with Clindamycin....
You really should be telling your llmd about the stools and perhaps limit your supplements and give your body a break for awhile...to clean out!
Good luck.....
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Yes, I also thought about chlamydia p or also mycoplasma.
I have herxed within hours of trying a new antibiotic so it is entirely possible this was a herx too. Another thing to consider is that levaquin treats bartonella too.
Hang in there. I hope you start feeling better soon.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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liz28
Unregistered
posted
I couldn't handle this drug at all, and had to switch to rifampin.
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posted
Beverly...may I ask what type of reaction you had that lead you to visiting the ER? Ever since this happened to me, I have been reading so many horror stories on the internet it's downright frightening. I wonder how come the FDA does not ban the use of the drug, period!
Cave...I'm sorry to hear that you had problems also. I couldn't agree with you more that doctors do NOT give that type of drug the respect it deserves! I'm living proof of that and I'm far from alone!
Marsy...a good find, indeed!
Bea...funny how drugs work on different people, eh? I'm actually taking maitake mushrooms and my natural killer cell activity has come up from a 5 to a 34, but I guess not enough. I will definitely get copies of all my records, as you said. Great idea! My stool is forming a little more now and still green, but not bright green, instead more brownish green. Too much information, huh? LOL! I think you're thinking of Cipro, which is in the same class as Levaquin. I checked out the P450 thread too. Good stuff also! I think you're right about the neurotransmitter testing, but I probably do need to have it done at some point. Do you have a recommended lab?
Jim...wow! Great info and site! You've certainly given me alot to think about!
Betty...yes, I've had a food allergy test and, surprisingly, it wasn't too terribly bad. Maybe it wasn't reliable though? Is there one that you could recommend? I'm sorry to hear about your allergies. By the way, I've read enough of your posts to know that if I didn't break up my posts, I was gonna be in big trouble! Anyway, no problem. LOL!
Tony...I'm sorry to hear about your experience. I'm glad to know you know what to do about it now though and didn't have to suffer needlessly from the Levaquin like I did. Unfortunately, I took one albuterol treatment and thats what sent my restlessness/agitation into an upward spiral and for whatever reason I'll probably never know. Ugh! Can BB really ACT like CPN? Yes, it sure seems like Jim is a smart man, but could one of you please help me to understand that, just in case it happens to me again? Would a white blood cell count of 16,000 mean anything in that regard? Yes, I'll definitely be sure to tell my LLMD about my stool, when I go to see him soon. I'm back to taking some of my supplements, but, as you said, I still need to get myself a little more cleaned out, before I start taking the rest of them.
Nurse...Yes, I thought about mycoplasma too or just a reactivation of either, who knows? It's definitely a pretty scary thing for me to have to live with now! Ugh! I've herxed also, but nothing like this, unless something just broke loose and I got flooded? Yes, I read where Levaquin treats bartonella too, which makes me wonder with all the restlessness/agitation I was feeling, if that's not what it was treating too. I'm not so sure though, since I have read many horror stories on the net recently about Levaquin's central and peripheral nervous system stimulant properties and how much of a poision it is. Ugh! Never again, as I will try something else first and take my chances!
It's been a week now and I am starting to come out of it slowly, but surely. Thank God! The things that have helped me the most have been brain B-12, glutathione, charcoal, magnesium, neurontin, and oxycodone. I truly believe the toxicity of it all, both the drug and the dieoff, somehow affected my GABA receptors, even beyond what the drug already does. The only thing that even comes close to me ever feeling like that before is having surgery, which I reckon was another toxic drug reaction to the anesthetic. That worries me alot, because I know I'm bound to have to have surgery again sometime in my lifetime, but I keep hoping that as I get my infections under control, my body will begin to finally heal. Maybe then I will be able to detox better and tolerate drugs more, which seems to be one of my biggest problems, although I'm not sure of THE exact cause, except that I have been severely infected with bacteria and viruses for a long, long time that have gone untreated, until now. Does that sound familiar with anyone here? If so, how are you doing now?
I am still having problems eating though, as it seems to stir up more of my symptoms, but I am feeling stronger everyday, although I am still restless/agitated at times, as well as nauseated and having some diarrhea, which are most troublesome now. It will be interesting to hear what my LLMD has to say mid September!
Thank you all so very much for your kind, comforting, and informative replies! Your support here is amazing and without it, I'm not sure I could get through all this!
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi jjeennnniiee, I had a very severe headache, I wouldn't take cipro after that for a very long time.
Before I was treated for Lyme and Babesia I was not able to tolerate drugs at all either. I am so much better today than I was 5 years ago.
I'm glad you are starting to feel somewhat better. Posts: 6638 | From Michigan | Registered: Jun 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Jen,
I noticed you are taking oxycodone...this painkiller made me aggressive and a little hyper...the codeine...my system or the lyme seems to be hyper-sensitive to codeine...
Just a thought.....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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