When you are a Chronic Lyme Disease patient, every time you are sick with something the tendency is for physicians to always blame it on your Lyme. I’m not saying ALL of them do this but I AM saying that some would do half the percentage of testing on you than they would on an otherwise healthy person who happens to come in with the same symptoms. Unfair? Of course. Illegal? Most definitely. Unethical? You betcha! Happens every day? Yup.
I’ve written a post similar to this before called “We get other “stuff” too…” where I talked about the fact that Lyme patients can get sinus infections, gastroenteritis or the stomach flu as we like to call it, strep throat, bronchitis, pneumonia, ear infections, appendicitis, or any other host of illnesses just like the non-Lyme community. We have to be aware of our own bodies and our doctors have to be sharp enough to know what is a Lyme related problem versus a routine health related issue.
When I wrote that post I was just talking about general minor illnesses but recently I had to make a major decision concerning my Lyme disease because it involved having surgery. In today’s world we think that having surgery can be no big deal most of the time. You go into a day surgery center, have a drug induced nap that is all safely controlled by doctors, you wake up in recovery, your family takes you home, you have a few really lousy days and it’s all done. Well, for a Lyme patient there is a lot more to consider.
Surgery for us is VERY dangerous. First of all, we are on a million medications. Some of those have to be stopped 5-7 days before so we are all screwed up from a Lyme standpoint before we even get there. We are on antibiotics already which complicates what the surgeon may want to give us that is specific to the particular procedure. Most of us have multiple body systems that have been attacked by the Lyme so we have medications controlling our heart rates, blood pressures, seizure prevention and even breathing patterns. Altering these medications or combining new anesthesia medications with these drugs can have some serious effects on the patient in the OR. The anesthesiologist has the toughest job in the room that day to keep you sedated long enough to do the procedure thoroughly and safely but still keep you alive without going over your threshold of drug tolerance. There is a lot to think about just from the medication stand point.
Secondarily, we have to think about the other issues like the possibility of infection. We know that our immune systems are already compromised and stress can even worsen that. Will that compromised immune system allow infection to get to our incision site or will it cause a Lyme flare up? It’s a chance you have to be willing to take. Then there is the post operative pain to consider. We are already struggling daily with an enormous amount of pain. How are they going to control MORE pain without killing us with more pain medications? They have to give us something because that would just be inhumane to do major surgery on someone and then say, “Oh sorry Ms. Lens, we’re ‘not comfortable’ with how much pain medicine you are already taking so we’re not gonna give you anything afterwards because we’re just too ‘concerned’ something might happen to your breathing…..”
Well, if you’re that concerned then you should put me in the hospital where you can keep me on oxygen and monitors 24/7, so you can intervene if that happens but get me out of this pain!! Oops, did I say that out loud? I’m so sorry…..exiting with a big smile on my face. **Sidenote: This did not happen in my case. Thankfully, my doctors were all willing to cover my pain needs (safely and within reason) with their prescription pads knowing the daily pain that I live with. I didn’t have to beg for my meds like some poor other Lyme patients do just because their MD is too afraid to cover their pain appropriately.
But back to my point of always getting a second opinion and how this relates to your Chronic Lyme Disease. I recently had right hip surgery for a tear in my labrum. I went to see a well known surgeon who I liked very much because I really wanted him to do the surgery. He (Dr #1) walked in the room with my chart in his hand, moved my leg in a couple of positions and said straight to my face, “I won’t ever operate on you because of your Lyme Disease/past medical history all related to Lyme and you’d be hard pressed to find any other surgeon in this city who will take that chance either.” My jaw hit the floor. I couldn’t believe that he expected me to hobble around on a cane for the rest of my life. I am only 44 years old! He recommended 2 months of focused PT on my hip and then a follow up and I walked out, flabbergasted.
Little did he know, I had already made an appointment with his biggest competitor in the city which was a very large group of doctors that had many amazing hip specialists. I saw them a week later. When I saw Dr #2 he was kind, thorough, and not one bit afraid of my Lyme Disease. He said that they did hip surgeries on people sicker than me all the time and my medical history did not worry him at all. If it put me into a flare up, we would deal with that when and if it happened. However, he said that he was talking with his colleagues and there was another doctor there who was better qualified to do the surgery that I needed done. That doctor was available to see me immediately if I was willing to meet him, did I want to? Well hell ya!!
We were walked across the office to Dr #3’s area and seen immediately. I was the Queen for the Day in that practice! Dr #3 said he had gone over all my records and seen my MRI already with the huge tear in it. He did the most thorough exam out of all of them! His only concern was that he couldn’t be sure if the pain was coming from the tear or coming from the Lyme (great, here we go again….) so I start defending myself again that it only started hurting when they put me in PT for overall deconditioning and towards the end of two months the pain was so bad I couldn’t continue. That’s not Lyme, that’s an acute issue. He wanted to give me an injection that would numb the joint but didn’t contain steroids because we Lymies can’t have steroids at all. If the pain came back within 24 hours, it was the tear causing the pain. At that point in the day, as kind as everyone had been to me, I just could not commit to having a needle blindly shoved into my hip joint so I had to refuse. However, he did say the magic words, “I know you are not up to it today but it would be my pleasure to do this surgery on you in the future if you decide to go that route. It is obvious to me that it is warranted and I have no concerns about your Lyme Disease whatsoever. Give me a call when you want to schedule surgery.” I walked out of there sayingto myself, “YES, BAM, IN YOUR FACE DR #1, I TOLD YA YOU **** . THERE IS A SURGEON FOR ME!!!!”
Then when I got home and came off my pedestal of glory, I sat down and really considered what to do. I decided to go the conservative route first and if it didn’t work then I would have the surgery. So, I did two months solely focused on hip PT (didn’t work) and went back to the first guy’s office where I saw his PA whom I like very much. Just as I thought, he said the PT was not helpful and there were “…no surgical interventions that this office has to offer you but you can go see our Dr#4 who does stem cell injections and see if there is anything he can do for you. Other than that, I don’t know what to tell you because no one else in the city will do surgery on you if my doc won’t.” I said to him as I stood to leave, “Don’t worry about me, I have a surgeon on standby waiting for my call who has already agreed to do the surgery but thanks anyways” and I walked right past him. I was so freakin ticked off. The look on his face was priceless.
Needless to say, I am a firm believer in covering all your bases so I made an appointment to see the doctor who does the stem cell injections. I knew that I had to have tried everything before I took the chances that I was going to take on surgery. So, I went to see Dr#4 and immediately he said I wasn’t a candidate for stem cells. I truly don’t believe he said that because it had anything to do with Lyme. I just think that stem cells would not help with a torn labrum in the hip. Of course, he reiterated the policy that his practice was “never gonna do surgery on a person with a history like mine” and I wanted to throttle him right then and there. But he did offer me the same shot that Dr#3 had offered (the 24 hour numbing shot) to definitively determine if the pain was coming from the tear but he did his shots under ultrasound so he could see where the needle was going. That sold me and I said, “Go ahead and do it.” I walked out of there pain free for the first time in eight months. Don’t forget, if it wore off in the next 24 hours then it was the tear that was causing my pain.
I had the best night ever. I walked to the mailbox which is like a mile away. I played with the dog. I didn’t use a cane at all. I was having a blast! The doctor had told me to go home and beat it up if I wanted to so I had a great night and then slept the best night’s sleep in a long time. Unfortunately, at precisely 2pm the following day, the hammer fell……the party was OVAH… (as we say in Boston). Done. The End. Kaput. The pain came roaring back like Katrina hit the 9th ward! That is precisely when I picked up the phone and scheduled my right hip surgery with Dr#3 for February 29, 2016 at 6:45am.
When I said always get a second opinion it’s because no one doctor is always right. I had my surgery done, there were no complications with stopping my meds or with the anesthesia or with post-op pain management or now during my first week at home of recovery so far. As it turns out, when the surgeon got in there he found out that I was walking on TWO major tears in the labrum so he was able to repair both and he even cleaned out some arthritis too so things are all shiny and new in my hip socket. My Lyme has not seemed to be a problem, I’ve had no herxes, no reactions to medications and was able to get right back on my normal med schedule without issue. I am walking on my leg just fine, doing the exercises like any other post-op patient would be doing and getting through it. The only difference is I am a little more tired than someone else might be.
So, my advice to you if you have a chronic illness and are facing a decision about possibly having a surgery for something that is not an emergency but certainly needs to be done is always get a second, or third, or fourth opinion. Keep seeing doctors, PAs, ARNPs or whomever you need to until you have all your questions answered and all of your fears put to rest before you move ahead with surgery. I had no doubt that day that when they rolled me into that OR, they were taking my Lyme Disease just as seriously as the job they had to do in my hip and that made all the difference in the world. I had done everything that I could do, now it was up to them and they did it beautifully.
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