I just found out that I HAVE to have surgery, it can't be put off any longer. It's scheduled for April 21st. Has anyone else had surgery with Lyme?
I'm not getting any Lyme treatment and feel terrible. I don't know if it's due to Lyme or because I need the surgery. (Worsening fatigue, chills, joint pain, head & body aches.)
Will this make the Lyme worse? Is it dangerous? The Dr doesn't know much about Lyme so no answers there. She's been postponing surgery as long as possible.
Just when I was hoping to get back to work.
It's hard to see the glass as half full when you're drowning.
Not feeling very hoppy, Gerifrog
Posted by Alv (Member # 15192) on :
Oh...NO it was my biggest mistake .I was having ful llyme activated as YOU and I went under many things....
THIS GAVE lyme the oportunity to GO FULLY NEURO IN 1 YEAR.
Wish I knew...would have never done that..SO when I removed my mollars and COULD BARELY walk !!
The change was OVERNIGHT worsened BY 10 fold.
Only if it is a matter of life and death ..MAYBE ..HIGHLY RECOMEND you to talk to an LLMD on what you have to do.
I did not know what I had and I was chasing many other things to see what I HAD as MY PAINS were escrutionating ..I have had at that TIME bells palsy and LYME and coinfections were already NUTS!!!!
If I have had started treatment before I did the surgery everything would have been diferent for me...
Posted by Keebler (Member # 12673) on :
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It is vital to have a good lyme expert consult your doctor as most surgeries require steroids during and after to reduce swelling.
Steroids can make lyme blossom.
And - any stress with untreated lyme is very hard. Please be certain that your doctors all consult an ILADS LLMD about which exact antibiotics to use if steroids are administered.
And, then, will you be able to take liver support to control any herx response?
The anesthesia can be especially hard on the liver and liver support could really help but most doctors don't know much about that.
Milk thistle is good. So is NAC. Of course, right before surgery, fasting would be required so supplements are out of the question but you might be able to do a glutathione topical cream to help your liver.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
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Posted by Jill E. (Member # 9121) on :
I had my gallbladder removed last summer, it no longer contracted due to Lyme and coinfections scarring it so much.
I was concerned about surgery because I have had seriously dangerous reactions to anesthesia in the past, and also because so many Lyme patients do worse after surgery.
So I worked closely with my Lyme doctor (who is in another city) and with the surgeon and anesthesiologist - I had extra consultations (cost me money, but worth it) to make sure the surgeon and anesthesiologist understood and complied with all my issues.
The surgeon originally was not going to use IV antibiotics during surgery but due to my being on oral antibiotics, was willing to use IV during surgery. My Lyme doc had wanted the surgeon to keep me on IV antibiotics for a few days after but the surgeon would not.
My Lyme doc switched my combo of oral antibiotics for a few weeks prior to surgery so I was on a more aggressive combo, although I never tolerate full amounts. The idea was to protect me as much during surgery - can you get onto antibiotics ASAP?
I also had a long talk with the anesthesiologist beforehand given my history of bad reactions and my being so sensitive due to Lyme. I told him as a Lyme patient I cannot be given steroids. Good thing I told him because he said that steroids are sometimes used during anesthesia if there is nausea (and I do get nausea). So make sure no steroids unless it's life-threatening.
I actually felt great for about two weeks after surgery but then went downhill for many months after. I think the surgery made the Babesia, which I finally tested positive for but never treated, come out. So I think it's important to get onto treatment and stay on treatment.
Is there a reason you're not on antibiotics now?
Jill
Posted by Ocean (Member # 3496) on :
I'm not sure how major you mean (hopefully not something really serious like open heart or anything). My appendix ruptured and while it would have been a simple surgery, the hospital staff had me in there for 15 hours deciding what was wrong (teaching hospital, very classic symtpoms), I got severe infection in entire abdomen.
So they had to clean my bowels, female parts, ect and tripled the surgery time. I didn't know I had Lyme then (misdiagnosed with CFS 2.5 years prior).
I actually felt better after surgery than I had in a long time. I finally had antibiotics, namely cipro as my oral one and I felt like I was high on life!
Course it didn't last, but I didn't really get any worse after it though.
Good luck to you, let us know how it all turns out!
Hugs,
Ocean
Posted by Gerifrog (Member # 17990) on :
I was declared "cured" in Sept 08 by the ID & neuro (had 4wks IV abx) They say my problem is emotional stress not Lyme.
I can't afford an LLMD right now.
My primary is away on a long vacation. I'd be going into surgery this week except my surgeon is away.
I do very well with anesthesia, startled one nurse half to death by how alert I was afterward (she thought I'd be out for a lot longer).
I really need this surgery NOW. I'm getting more anemic by the day.
It's not heart surgery.
I'm not sure what to do right now.
Gerifrog
Posted by hshbmom (Member # 9478) on :
My experience:
A family member has Lyme and some other coinfections. General anesthesia was used for the extraction of impacted wisdom teeth. What should have been a no-frills outpatient procedure turned into an episode I don't want to repeat.
This person was hospitalized overnight for observation due to a previous problem with anesthesia. They had to gave IV morphine after all the anesthesia wore off.
Now, four months later, this person has the most excruciating pain ever and nothing relieves it even a little bit. The pain is deep bone pain, in addition to muscle and joint pain.
This person had generalized neuropathy prior to sugery, but it seems the stress of the surgery, the anesthesia, or the post-op steroids allowed the infections to multiply exponentially.
This happened even though antibiotics were given before, during & after surgery.
Posted by viva (Member # 8183) on :
Just one more perspective: My husband had to have a colon resection almost 2 years ago, in the midst of Lyme treatment. He got through it all without major incidents.
Just make sure to tell EVERY person at the hospital that you talk to "NO STEROIDS." Don't assume that just because it's written in red on your chart, that everyone knows.
Best of luck, Viva
Posted by Keebler (Member # 12673) on :
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I would tape a "NO STEROIDS" sign to the place where they would insert medicine into the IV.
But, then, you have to have something else that will act as a strong antiinflammatory.
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Another consideration is that some local anesthetic (and perhaps anesthesia) will contain epinephrine. It won't have that in the name, but you have to check for all the ingredients.
Epinephrine (may or may not be a steroid and I'm too tired to find out right now) but it can be very hard on the endocrine system for lyme patients.
My dentist figured that out and had "No Epi" in my chart.
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I don't think any U.S. hospital will do it but acupuncture has even been used for open chest lung surgery in China. I saw a video of that.
Amazing. The person could talk and was aware but not bothered. Of course, the acupuncturist would have to be expert in surgical procedures but it is possible.
When I had foot surgery 20 years ago, I had seen that video and ask for acupuncture instead of general anesthesia. The anesthesiologist did back flips when I asked for that (and not out of joy!).
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Posted by Al (Member # 9420) on :
I had 3 surgeries one was major . I had no additional problems. Although the surgeon found an unidentifiable infection and put me on IV Vancomycin for 3 weeks. He thought it was a hospital infection, I know different.I did have steroids for a few days with no problems as it was only short term. I am very positive for lyme.
Posted by Gerifrog (Member # 17990) on :
I see the cardiologist on the 15th. I'm going to try to get another Lyme test as part of my pre-op.
Lately, it hurts so much, I can barely move my legs. The fatigue and headache are worse this month too. It's a bad flare, maybe it'll show?
Don't know what else to try. Not looking forward to the surgery.
Gerifrog
Posted by nyjohn (Member # 15361) on :
geri please do not go see dr t or dr c on washington ave. they don't know what they are doing and i blame them for my misdiagnosis for lyme when i had bit + rash + symptoms. i know others who have been shafted by them and ended up being sicker because of their lack of knowledge about lyme. if you can get across the river to see dr h, for lyme, he can give you a better idea what to do. yes, he is hard to get in to see but perhaps you can explain your situation and they *might* be able to fit you in. if not, maybe get into see dr b in rhinebeck. yes it will be expensive. but may be the best option. btw, please for your own sake do not get operated on in either benedictine nor k'ton hospital. i know the pain may be bad but it would be much wiser to deal wtih it for a bit longer and either go to albany or westchester med. even better, nyc. i wish you all of the best in your recovery. i have 2 surgeries scheduled for the early fall. i would have had them done earlier but lyme has been in teh way. and my hips are killing me! but better to wait than to have the bugs get worse!
Posted by randibear (Member # 11290) on :
i had to have my gallbladder out and, man, it all went to hell in a handbasket...lyme of course.
I would never, ever, ever, have any surgery unless it was a car accident and i was dying....period...
My sister had a face lift and breast reduction. She has been in such pain afterwards that she is considering oxycontin or morphine!!! Nothing touches her pain. I'm sure it's lyme...
All I can say, is please, please be very careful. If it's life threatening, you really have no choice, but never have elective surgery for any reason.
I wish you much luck.
Posted by Gerifrog (Member # 17990) on :
It's not elective. It was a do it now or soon choice. The Lyme put it off but now there is NO choice. The only option left is NOW.
If I go to Albany, there will be another delay. I'm not sure my body could handle that. It's really draining me, literally.
I'm afraid I won't get clearance from the cardiologist at this point. That is a possibility too.
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