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severe flare up from surgery last week. Please help!

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Posted 1/14/2013 5:37 PM (GMT -5)

I dont know if I am losing my mind or what is going on!!  I had to have an emergency apendectomy last Tuesday.  The appendix was not ruputured but was inflammed.  They gave me IV Levaquin for an antibiotic during the surgery, general anesthesia and then I had a combo of morphine for pain in the beginning and switched to dialauded and morphine later that evening.

I have been living a nightmare ever since!!  Every symptom I have ever had has come back and increased ten fold!!  I have severe dizziness, brain fog (feel like I am in a cloud), heart palpitations, skin burning pain, muscle aches.  I dont know what to do.  I have contacted the surgeon.  They cant find any cause for any of this other than possibly a Fibro flare up along with a Lyme disease flare up.

Has anyone else gone through something similar to this either from surgery or from antibiotics?  I feel like death right now :(.  Thanks for listening.

Nancy

Posted 1/14/2013 6:39 PM (GMT -5)
Hi Nancy,

In 2008 I took 2 doses of 500 mg of Levaquin and all heck broke loose.  I just got my papers out from that year to explain my reaction to this antibiotic.

4/7/2008- 4/8/2008:  first 2 doses of Levaquin for bronchitis

4/8/2008:  extreme anxiety, panic attacks, throat tightening, air hungar, palpitations, tacycardia (160 beats per minute), tremors, chest pain/tightness, insomnia, horrible mucous production

4/9/2008:  Levaquin stopped....primary GP notified.....chest xray negative 

4/12/2008:  emergency room visit:  new symptoms now included fluctuating BP (90/42 to 220/160), diarrhea, chills, sweats, flushing, blurred vision, cog fog, derealization, apathy, fatigue/weakness, right sided tingling, shallow breathing with hyperventilation, throbbing heart beat, fasiciculations of LE's, eye floaters, muscle cramps, popping of joints, poor balance, burning skin, HORRENDOUS mucous production, etc.

Blood work was within normal limits (WNL).

All these symptoms are the same as Lyme disease and co-infections.

The biggest mistake I made was taking Xanax to help alleviate the excruciating anxiety/panic attacks but after 8 days of no sleep I succumbed to it for 4 months.  The withdrawal and post withdrawal of xanax was as bad as the Levaquin symptoms.  Now I am dealing with Lyme's and Babesia which is just another joke on me. 

I can't honestly say that is what is happening to you but I thought I had the responsibility to tell you what these fluoroquinolone antibiotics can do to people.  There are forums and alot of information about the horrible side effects from these meds.  By the way, these antibiotics have been black-boxed for causing tendon ruptures.

Please let us know how you are doing.  I am truly sorry that you are suffering so much.

Patty  xo

Posted 1/14/2013 6:41 PM (GMT -5)
By the way, if you don't mind answering, how long have you been on Ativan?

Patty  xo

Posted 1/14/2013 8:02 PM (GMT -5)
Interesting point of view. I can't believe this is happening to me! I hope I don't die from it but I also don't know what else to do??

I've been on Ativan for a couple years now to control dizzy spells
Posted 1/14/2013 8:48 PM (GMT -5)
Nai,
Is it possible that the abx. is causing a Lyme or Bartonella herx? Levaquin is most recommended for Bart. and doesn't Bart cause major anxiety and panic attacks?

Hopefully this will be a short-lived flare/herx!

The most important thing right now is probably getting good quality sleep, which I know is probably pretty much impossible. If you need to take something like a sedative to sleep right now, just take it. You had surgery less than a week ago. Your body needs to heal as well as recover from the Lyme flare. And you need sleep to heal.

I had a massive onset/flare of Lyme symptoms post delivery. I went weeks w/barely sleeping and it was a complete freakin nightmare. The mind and body just can't heal or function w/o sleep.
Posted 1/14/2013 9:24 PM (GMT -5)
I'm wondering if that could be what's going on...a bad herx. I tested positive for Bart. It's been several years though. I've done so many treatments and I've never gotten better. Rt now I'm scared and I don't have an LLMD here in CO anymore. Any recommendations?
Posted 1/14/2013 9:41 PM (GMT -5)
Are you able to detox right now? Maybe that would help. You're probably limited w/ the kind of detoxing due to the surgery by try foot baths, TONS of water w/ lemon, alkaseltzer gold, activated charcoal. Also, some say benadryl helps. You could take that before bed and it would also help you sleep.
Posted 1/15/2013 8:50 AM (GMT -5)
Nal,

FYI, my LLMD refuses to prescribe fluoroquinolones to his patients due to the potential side effects.  He also states that some of my symptoms (after 5 years) could still be from this drug.  Having said that, hopefully this is just a bad herx and it may not last that long.  Mystery Illness has some very good suggestions about detoxing but I am sure you know about all of that.

Also, Ativan and all benzos can cause burning pain.   Benzos were meant to be prescribed for short term relief.  Those taking benzos have no idea how horrific these meds can be.....nor do most doctors (very similar to Lyme disease).   I have had to sort through all that I have been through to figure out what has gone on with me.  The only way I knew what was happening was to have testing through Igenix lab.  I had a triple whammy, so to speak.   After 3 years of being so sick and getting worse I took it upon myself to get re-tested for Lyme and had a confirmation that I indeed have this disease. 

I wouldn't feel right if I didn't mention other possibilities because of what I have been through and from all the research I have done over the last 5 years.  The more we know the better we can take care of our health, IMO.

Patty  xo

Posted 4/17/2015 4:51 PM (GMT -5)
Nancy

I am glad there is someone else out there that has the same thing as I do. I had Lyme disease and was put on a course of antiobiotic 2 weeks before my lumpectomy surgery. Two weeks later, I have had the absolute worst flare up of Lyme that I have ever had. I have had Lyme disease more times than I can count but this time it was totally different. It slammed me. Every joint in my body hurts, I suddenly developed poor circulation in my hands really bad and I have to sleep with braces on at night for carpal tunnel syndrome which I never had. I am going to the doctor next Friday to go back on antibiotics to rid myself of the symptoms. I don't think we ever get rid of the disease, but this is something that I have never experienced before. Anytime I had Lyme it would hit my back and I knew that I had it. Usual course of antibiotics (doxycycline) to get rid of the symptoms. But what I have now is brutal. I also developed extreme fatigue and muscle aches.  I hope you feel better soon. 

 

Post Edited (aseretliag) : 4/17/2015 3:58:08 PM (GMT-6)

Posted 4/17/2015 8:06 PM (GMT -5)
I hate to say it but I'm glad other people had issues with their Lymes after having a surgery. I was diagnosed with Neurological Lyme Disease back in 2002. I had every oral medicine and the IV and had flare ups every so often. I had no flare ups from 2010-2014. I had elbow surgery and was obviously put under, we'll 3 days later all my neurological lyme symptoms returned. From 8/14 til today, I had 5 flare ups withy lyme symptoms. No doctor has a reason why the symptoms return after my surgery. A few doctors told me that I need to see a psychiatrist because my most recent bloodwork came back negative of what they determine a positive lymes test. It sucks that the symptoms return and I'm fighting it right now but I'm glad to see other people complain about having issues after surgery.
Posted 4/18/2015 3:29 AM (GMT -5)
Pphillies and asretiliag,

It sounds like you both have not had adequate treatment. Have you been seen by a Lyme Literate Doctor who is associated with ILADS? It is important to get complete and thorough treatment.

An ILADS doctor treats on the basis of symptoms, making a clinical determination. The tests are terribly inaccurate.

I hope you both pursue getting thorough treatment.
Posted 4/18/2015 6:13 AM (GMT -5)
My lyme symptoms exploded after surgery. I thought I was having an allergic reaction to the screw in my foot and I had the surgeon take it out. However, my symptoms didn't go away. When the body is stressed Lyme takes over. Surgery, an accident, stress, any trauma to the body can bring it out. It took about 8 months before I found out that Lyme was the reason for the multitude of symptoms. I had a few minor symptoms a few weeks before the surgery and a large bruise on my back and a rash on my stomach. The surgery brought it all out. Best wishes for getting it under control quickly.
Posted 4/18/2015 9:40 AM (GMT -5)
Achievinggrace,

In 2002 I testep positive and had the bullseye, an infectious disease dr immediately put me on doctcycline. Symptoms inproved but when I was taken off of doxy, the symptoms returned. I was then on IV for a month and a half. I was then put on oral medicine for the next 2 yrs which was the doxy, tetracycline and amoxicillin because I would have random lyme flare-ups. I also was put on a strict diet to help prevent the flare-ups. I then noticed that after I would drink alot, the next day all my lyme symptoms returned, so I stopped drinking. Like I said I had no issues from 2010-2014. Once I had surgery all the neurological symptoms returned, which I questioned to the dr who did the surgery but he said it shouldn't effect it. The last 2 times I had the flare-ups, it was the day after I had bloodwork, which again I thought was odd.

I saw 2 infectious disease Dr's and a neurologist since my surgery and they said that it can't be lymes due to they don't believe in chronic neurological lymes. My family dr said some doctors will tell me that they would say that. I never knew about the LLMD until I was on here. I used the search and the doctor that was shown in my area was a psychiatrist. Would they be able to help?
Posted 4/18/2015 10:47 AM (GMT -5)
Not sure that a psychiatrist is quite what you need, though it is good to hear that there are Lyme Literate psychiatrists.

Sometimes you have to travel a bit to find the right doctor. I drive two hours to my doctor and would go further, if I had to.

You can start and new thread entitled, "Seeking LLMD near (name your nearest big city or the region you are in)" One of our members might know of someone you can see.

I hope you find someone capable soon!
Posted 4/20/2015 9:40 AM (GMT -5)
" due to they don't believe in chronic neurological Lyme. "

This is your problem, Pphillies. You have been seeing the wrong doctors. If you email me with your general location (nearest big city and state), I would be happy to search through my list of referrals and share the names with you.
Posted 11/4/2016 4:07 PM (GMT -5)
Hi all,

I have Neuro Lyme/Babesia, and as a result I have debilitating headaches, bodily shakes, burning sensations in my chest, and rapid/hyperventilating type breathing., etc. I have been treating my Lyme for about 11 months, with both Chinese herbs, and just started weekly injectable Bicillin. I am getting periods of time when I am feeling better, but I am still herxing badly at other times. I get tremendous anxiety during my flair ups, for which my meds doctor has given me Ativan, but she recently switched me to Librium, because she believes that will be easier to taper off when the time comes. It seems every time I do some type of procedure(CT, MRI, Angiogram, Spinal Tap etc.) it has ended up making my Lyme symptoms worse-so now I am very careful about doing anything, unless it is absolutely necessary. After much deliberation, I was convinced yesterday that I needed to get a cystoscopy done(which was short and sweet, but not very pleasant), and after getting it done-my ANXIETY/everything Lyme related is through the roof. I will take my daily 25 mg Librium soon, and hopefully that will calm down some of the effects, but this insidious diseases is very ROUGH, as we all know. I am hoping to hear any responses from anyone who has any thoughts on this topic.

Be well and have a nice weekend,

rjb
Posted 11/4/2016 7:23 PM (GMT -5)
Are these procedures necessary?

spinal tap - are they still trying to diagnose you?

Spinal taps are not very good at diagnosing lyme...definitely not worth the risks.


I hope this is the end of these procedures for you...I know stress can ramp up symptoms. It does for me.

Try to rest and not have too much 'excitement' in your life until this subsides.

I have had several tests done...the mri's, X-rays, ct's didn't affect me...but the NCS and EMG did stress me out some.


((((hugs))))
Posted 11/5/2016 3:13 PM (GMT -5)
Girlie,

Thanks for the quick response. I am having intense anxiety(most likely Babesia related, which I have been tested positively for) since the Cystoscopy on Thursday. My Neurologist/Lyme doctor really wants me to doo EMG-NCS, to determine the level of my neuropathy, but I am concerned about my reaction to that test. You mentioned that you had this test-I would really appreciate your thoughts and or opinion.

Thanks,

rjb
Posted 11/5/2016 3:20 PM (GMT -5)
Hi bonnawanna,
I would ask him WHY he wants to know this? Will it change the course of your treatments? If so, then it might be something to do, if you are having significant issues with it.

Testing like this is hard on Lyme patients - our entire body is freaking out, and they want to add more stress to it by doing tons of testing. I understand that they want to use the tests for information, but if it's not going to actually change the course of treatments, I surely wouldn't subject myself to it.

I've also had the EMG-NCS testing, and I'll tell you, it didn't change anything for me. I knew more than that test told anyone. My nerves were affected badly, but nerve heal, so unless someone could explain why I needed to do it again and how it would help to have that information, I have refused to do it again - besides, it set off even more nerve pain for me!!

We can certainly get lost in the details of testing, and for most of us, more testing is not helpful. What helps is treatments.

The anxiety that you are experiencing doesn't mix well with a lot of testing - I can remember all too well what it feels like to have that level of anxiety.
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