If you want to follow the blog and get an email when things have been added, click on “Follow” on the very bottom right of the page, then enter your email It is not easy to find unless you are looking for it. I will only be updating when I feel there is something relevant to post.
The results from the MRI are pretty clear. Right knee needs to be replaced and down the road (1 year or 2+) the same for the left. There is a sense of relief finally knowing what path I will need to take. The custom knee replacement offered at the Cartilage Repair Center at BWH is nothing short of amazing.
What I did not see coming was how a change in my diet would impact my pain levels so dramatically. January 1 we started a diet without gluten, grains, dairy, legumes, added sugar and no alcohol. It is referred to as a “reset” for your body. Kathy and I jumped into it on January 1 and we were all in.
I can not remember a new years resolution in my life that actually stuck or even made a difference. Here I am 3 weeks in and I feel great. Lots of energy, more mental clarity and I have received numerous compliments from people I have run into and the common comment is that I look “healthy”. The most profound change is the reduction of the inflammation and pain in my hands and my knees. While I still feel the pain in my knees it is a fraction of what it has been for the last 18+ months. Kathy has commented multiple times on how much better I am moving and she is 100% correct.
I am not sure which of the “banned” items is the culprit but I will be introducing one the food groups at a time and give it a few weeks with no other changes to see how I feel. The first test was over this past weekend. We went out for dinner Saturday for our 12th anniversary and I had a beer with dinner. Watching the Pats game on Sunday I had one beer and I am sad to say, beer is no longer an option. The joint pain in my hands has returned and while it is not to the same level it was gone prior to having the beer. My knees also have increased pain and again not as bad but noticeably worse.
It is amazing how much of an impact the food we eat has on our bodies. I have really become a student on this subject over the last several years. Our bodies are amazing and when we provide them good clean fuel we can perform like a finely tuned racing machine. Conversely when we add foods that are processed, full of sugar or don’t agree with our systems we slow down, get sick and life generally becomes harder. I think what so many people deal with is that they are used to a less than optimal state due to years of the SAD (Standard American Diet). Plainly stated, they don’t know any different and don’t realize that there is a problem and more importantly a solution.
Made a trek to Shields MRI at Lowell General Hospital tonight for an 8:30 MRI. Dark, rainy night and it made the 45 minute trip feel like a couple of hours. The reason for getting the MRI done there was the type of machine and the strength of the magnets. The required minimum for Dr Minas is a 1.5T magnet. A fun way to look at the strength of an MRI is through this example: Let’s say a 1.2T magnet is a Toyota Corolla– a 1.5T magnet is a Lexus – a 3T is a Ferrari. In my case, the Lexus is exactly what I needed. MRI is complete and I am already anxious to get the feedback from the doctor.
I feel like I have been chasing ghosts for the past 18 months. Reading back in blog I felt for sure the answer to my chronic joint pain had been found several times only to disappear each time like a ghostly shadow. Who is to say this isn’t just another ghost? It feels like I am headed down the right path but is it “deja vu all over again” (thanks Yogi Berra)
I will get some answers later this week after they have a chance to evaluate the images. The big question is, do I want to hear the answers? Do I make it 4 years in a row with a surgical procedure? Do they provide me with the same response as my rheumatologist and former ortho doctor which was, “everything looks normal to me, no clue what is causing the pain”.
My goal is to be skiing by mid to late January 2018. One way or another, I will make that happen!
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.