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After a confirmation of Lyme from a doctor in Exeter a few months ago I have followed his treatment program and I really had hope this would resolve the pain. 2+ months later, things are no better and sometimes worse depending on the day. At the behest of a family member, I went to see an infectious disease specialist in Boston at Brigham & Womens.
Dr Yawetz is Lyme literate and and very experienced in all types of infectious diseases. We met on a Wednesday and she ordered up more blood work (Yeah!..not) During her exam of my right knee she commented that she did not feel that the Lyme infection was the culprit. ARGHHHH, really?
She carefully moved my leg around and explained that while orthopedics is not her field, the pain is coming from something structural within the knee. She referred me to an orthopedic knee specialist, Dr Tom Minas ( http://www.cartilagerepaircenter.org/ ).
I was able to get into to see his PA today and after going over the X-Rays it is clear that the pain is being driven by a lack of joint space on the inside of both knees. Because of my being bow legged, the weight bearing line runs down this inside of the knee and not thru the center as it should. An MRI will need to be done in order to determine next steps. There are several options depending upon the MRI results. Unfortunately they all involve another surgery.
The nagging question for me is why did my orthopedic surgeon here in NH not see this as an issue. After doing a meniscus repair on that knee in June 2016 I went back multiple times to try and sort out what was causing the pain. He tried cortisone injections, removed fluid on multiple occasions and also tried a joint cushion injection using euflexxa. He finally threw his hands up and said it was out of his scope. He had run out of options. There was nothing he could see that would cause the pain. Go see a rheumatologist was his suggestion. #beyondfrustated
We recently returned from 8 great days in Ireland. We covered the southern portion of the country and had a great time. Beautiful country and the weather was ultra cooperative!
The challenge for me was that the trip required quite a bit of walking on certain days. Other times we were on a bus. Overall, I walked more than I have in over a year. I was determined not to let it interfere with the trip. We traveled with another couple and I did not want them to miss anything because of me.
The only thing I decided not to attempt was the trip up the Blarney Castle. It was steep and a pretty good climb. In retrospect, good decision as I was not really into kissing the stone anyway and it would have been really hard on my knees.
Overall I did pretty well but I would be lying to say it was not a challenge. Most days were pretty painful and I found myself lagging behind the group most of the time. I just kept pushing and was able to get thru the trip without missing anything but kissing the Blarney Stone and I am okay with that!
I am back in the routine of the infrared sauna and hot tub which provides temporary relief but the root cause of the joint pain remains an elusive target.
After over a year of trying to sort out what has been causing my brain fog and joint pain, I finally have an answer and the answer is Lyme. I have suspected this since a positive then negative test for Lyme back in November. I finally found, after 5 previous doctors, a Lyme literate doctor in Exeter, NH. He ordered blood test that were never mentioned by my other doctors. The results came in Monday and I met with him on Friday.
He ordered a test called the Borrelia burgdorferi C6 Pep Abs ELISA. It came back with a strong positive of 3.28 compared to the norm of .90 or less. The standard Elisa test was also positive and the Western blot showed 2 markers, the same as in November. The other issue is a co infection of candida. Candida is naturally in the gut microbiome but when the immune system is suppressed as mine is now, there can be an overgrowth of Candida. Here is a link to a great article on that subject. http://www.tiredoflyme.com/candida.html
So where do I go from here now that I know for sure who the enemy is that I am fighting. To start, I am on a 6 week protocol of Oregano Liposomal capsules, Artemisinin Liposomal capsules and Ozone Sauna treatments twice a week. I have been on the Oregano Liposomal capsules for 30 days and I feel we are heading in the right direction. I am guessing that if you are reading this you have never heard of any of these treatment options. I was in the same position and had not heard of any of these as healing options for Lyme and actually never heard of them at all for anything.
My big AH….HA from this experience is that western medicine, while being very valuable in many ways, is light years behind the times and refuses to look beyond what they are taught. My rheumatologist, a wonderfully sharp young lady, admitted that there is so much to be learned and she was bound by CDC guidelines. She told me that based on my test results, I was fine! My response was, “Okay, then why did it take me 10 minutes to walk 100 yards from your office to my car on my last visit?” Her reply was that she knew that was what I was going to say and she had no answer.
Bottom line is this, be your own best advocate! Do not settle for answers from doctors that you know are not correct. Question everything and do your homework when it comes to your health issues. I am a huge fan of traditional medicine in some cases. The doctors at Brigham and Women’s and Dana Farber saved my life when I was diagnosed with Sarcoma. That being said when the answer is “take this pill and we will see if it helps” and it doesn’t …start looking deeper.
I am not out of the woods by any means but when the Fed Ex truck pulled up to my house today and I got up from my office chair and bounded down the stairs. I got to the bottom and realized, holy crap, I have not been able to that in a year! It had been one step at a time and sideways because it hurt too much to walk straight down the stairs. I will win this battle and I feel the tide has turned.
Back in Boston today for a follow up with medical oncologist. He is a part of the team that is in charge of my care.
The appointment was at Dana Farber and in the same office where I met my surgeon, Dr Ferrone, 2 years ago. It is a bit surreal to be back here. I was always next door at the Brigham for treatments and follow ups. The only time I was in this office was day one when Dr Ferrone laid out the game plan.
While I waited for the doctor it gave me a few minutes to reflect on the journey over the past 2 years. I have come to realize it is all about the journey and not the destination.
Whether it is a journey like mine which has been filled with a roller coaster of experiences and emotions or someone else’s trek, it is all about enjoying the ride. I adopted that attitude when I first heard the “C” word and it has changed me forever.
Sometimes I still get caught up in “life” and forget to see, smell, touch and generally take in and enjoy everything around me. Now it is a lot easier to get back on track enjoying life and realizing how many wonderful things I have in my life.
After the 30 days of antibiotics recommended by a local naturopathic doctor, who is a Lyme specialist, things did not change. I was told if the antibiotics did not help then he could not help me and I should see a rheumatologist. So much for being a specialist!
I did see a rheumatologist and after a visit where they drew blood and took fluid from my left knee, I was told there is nothing in the fluid or blood work that is a red flag. I am fine is what they said. When I asked if I am “fine” then why it was so difficult and painful to walk from the parking lot to her office she looked at me and said, “I don’t have an answer”.
I have taken over my own treatment and continually research Lyme or other options that could be the source of the pain. I have added some herbal supplements and even started taking CBD oil twice a day. I have also started tracking food and keeping a journal on how I feel each day. It is helping and my bad days are close to what a good day felt like last month. Progress!
My goal is to get a correlation between more painful times and what I am eating/drinking. So far it seems that sadly, beer is a trigger. Pizza is also a trigger. I don’t have it very often so that won’t be as big a miss as the beer. Had dinner with neighbors last night and they served pizza and I had a couple of beers. Paying for it today with pain in my feet and knees as well as joint pain in my thumbs in both hands. I have a hard time up or down stairs and walking more than 50 feet is a big ask. This is the 3rd time over the past couple of months that I have had one or the other and each time has been followed by a spike in pain levels.
So the fight and research goes on. I am getting a test done at the only lab in the US that specializes in insect borne illnesses, Igenix Labs. http://www.igenex.com/ By using there test protocol I should be able to rule Lyme out or know for sure what I am dealing with so I can get it fixed.
Sometimes is seems life really wants to test us. How resilient can we be? How many times can we get kicked to the curb only to get back up and push on. Apparently I am in for another test. To say that the past few years have had a few bumps in the road would be an understatement.
This past fall I was forced out of a job / passion I had been lucky enough to enjoy for the past 12 years. New Athletic Director and at the end of last fall, my college coaching career was over. Sad for sure but to be honest, it was time for a change and I am looking forward to life without the grind that is (and the grind I loved), collegiate coaching.
I wish that was the biggest hurdle I have to face this year but sadly it is not even close. I have been dealing with pretty severe joint pain since last summer. I had been passing it off as “old age” and maybe some residual scar tissue from a June meniscus surgery.
Here I am in February and the pain has now moved to being almost hobbling. Most days I struggle to get in and out of my car. Hand rails for stairs are a necessity. Taking my pups for a 200 yard walk is daunting as I struggle to get back to the house.
Multiple doctor visits over 6 + months to my primary care and orthopedic surgeon have produced nothing but more questions. Why do I feel more like 98 than 58? Lyme Disease may very well be the culprit.
I tested positive for 2 out of the 5 necessary markers in the Western Blot test to be considered “positive ” for Lyme. So I guess I am “kind of sick”, but not really?
My orthopedic surgeon tried everything in his bag of tricks and came up empty. My primary care went the standard route of antibiotics for 21 days to treat the possible Lyme. Nothing has worked and the pain is much worse and my mobility is more limited every day.
I have been researching Lyme and it is very clear that it is a misunderstood and mis-diagnosed disease. I went to see an ND (Naturopathic Doctor) that specializes in Lyme and I am hoping he will provide some answers.
A week in on new antibiotics and not much change. I understand it is going to take time. If I do have Lyme, it has been hiding and burrowing for quite some time. Based on my research and conversations with people that have first hand knowledge, the road ahead may be a rocky one.
One year plus one day ago I was coming out of surgery and hoping that they got it all. After 3 scans and 3 trips to BWH, I am cancer free! Still have many follow ups to Boston to make sure things stay clean. That is the good news. The other side of the coin is that I still am not nearly as mobile as I hoped 12 months post surgery. There is atrophy in the muscles of my left thigh and I need to sort out how I can reverse that trend. I am trying different things to increase stability and strength and eventually, I will get back to pre-surgery form.
I was really hoping to be back to 100% at this point but I really have nothing to complain about as the alternative (cancer coming back) is far worse. I will continue to look for ways to get stronger. One goal was to be able to run the fitness test with my college team this fall but it would take nothing short of a miracle for that to happen. I will continue to work towards that goal over the next 30 days but realistically I will be aiming for making some turns on the white stuff this winter!