Sunday, July 20

Hello friends & family,

Another long overdue update…but I have a really good excuse! Tyson, Calvin and I welcomed our little Abren Marley Fowler on the first day of summer, June 21st. Abren weighed 8lbs 6oz and was 21 1/2″ long. Thanks to our wonderful friends, Gia, Katherine, and Vanessa and our awesome neighbor who helped get Tyson into the car, Tyson and I were able to be together for the entire labor and delivery. The whole experience was really wonderful.

Because I had gone into labor late in the evening, around 11:00, our doctor had the hospital staff bring another bed into the delivery room for Tyson. We actually didn’t sleep while we waited because everything had been moving along so quickly and our doctor suspected I would be able to have the baby within a few hours which would have allowed us to send Tyson back home for some rest. Abren, however, had a different plan and didn’t arrive until 10:09 the following morning. Having Tyson’s support was incredible. And the moments we shared when Abren arrived were so wonderful; I saw Tyson filled with so much love and excitement! It meant the world to me seeing him come to life the way he did. :)

Also, I want to share that the wonderful Greenwich Hospital staff went above and beyond to ensure everything went smoothly for us both. Here is a picture of Tyson and Abren together for the first time. Our nurse helped make this moment happen :)

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Calvin came soon after the baby arrived and was so excited and very proud and protective. Here he is pushing his baby brother’s bassinet to my room from the nursery :)

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And one more sweet photo of our little guys…

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We are so grateful for our parents’ help with taking care of Tyson and Calvin while I was in the hospital and for the following two weeks at home while I recovered. <3

So as I mentioned, the long night and following morning spent in anticipation of little Abren's arrival was very tiring and as a result, took a very large toll on Tyson's condition. In the days following, he had increased difficulty breathing and eating which forced us to rely more on the bi-pap machine and the feeding tube. He felt an exhaustion that didn't seem to subside, so we just made sure he got the rest he needed. This, and his loss of appetite were sparks of concern for us both as we were told by doctors that these two were possible signs of co2 levels rising. Naturally, this felt like a huge step back but we reminded ourselves of two things: 1) we were lucky to have these devices to help him breathe and receive his nourishment and 2) he was still SO much better than he was a few short months ago at Apollo Hospital. That said, we immediately made plans to send him back to Dr. Shroff.

And so, as I write this entry this afternoon, Tyson is fast asleep on the other side of the world in India at Nu-Tech with his parents near by. He arrived last Thursday (July 10) and is doing well. The flight was uneventful and he was even able to sleep this time. He had his bi-pap machine with him so that he would never feel discomfort breathing and I packed 4 cans of his feeding tube formula so that he wouldn't be hungry. Upon their arrival to the hospital, they were greeted with wonderful enthusiasm by the Nu-Tech family and got help settling in. Shortly thereafter, Tyson texted me to let me know he was okay and followed up w a FaceTime call. As you might imagine, I hardly sleep at all while Tyson's on the plane. I track his flight and do lots of praying. So, finally being able to see his smiling face was such an enormous relief! The sisters immediately began the stem cell treatment and gave him some IV fluids to help replenish his system and manage his jet lag. Dr. Shroff said she was happy with Tyson's current state and that one of her big goals for this trip was to get him weaned off the bi pap (or at the very least, begin the process). He was able to lie flat on his back for 2-3 mins the other day without the mask and that's a great improvement! Tyson also says he's gained weight since his arrival and has noticed a nice improvement in his core strength! They're having new braces made for him so he can start taking some steps soon. You might remember the full body braces he had in the very beginning, the rib cage piece connects to the legs and once he's strong enough again, they can be broken down to just leg braces. We didn't have the option to use his old braces bc Tyson lost so much weight while in Apollo for 4 weeks, they just wouldn't fit. So you can probably understand some of the frustration Tyson has…feeling like he has to start all over again. And in a sense, he does, but not all is lost. Those stem cells he received last year are still working hard and growing stronger. We just need to catch up to them :)

Tyson is there this time for 5 wks, returning August 14th. I'm thrilled to report that his attitude/frame of mind have truly been remarkable which is a testament to his strength. He's always smiling when we talk. I'm so proud. I'm convinced his biggest challenge is the mental aspect of this journey; staying the course and remaining focused on the present are what's crucial to his improvement and overall healing process. You know, at first glance (and as awful as this may sound), it's possible that even a joyous occasion such as the birth of our son could potentially be marred by this evil and disgusting Lyme that's paralyzed my husband, leaving him unable to hold or carry his son like a father should. But it's only given him MORE of a reason to stay strong. In my humble opinion, since witnessing his miraculous recovery back in March and April, I am truly not worried about him. If this man can bounce back from the state he was in…there is nothing he cannot do. <3

And finally, I just want to say how grateful we are for his parents and the sacrifices they've made to be with him in my absence. Please pray for his continued strength and progress. I will be sure to share updates as they come in!

With love,
Ann & the boys <3

No matter how dark the moment, love and hope are always possible.
– George Chakiris

Monday, May 12

Good morning, friends and family! And a very happy birthday to TYSON!! I can’t think of a better birthday gift than to be reunited finally with his wife and son :) Tyson is currently on his way home after an arduous 8 weeks in India. His flight landed about an hour ago and I’m told that he did very well for the 14 hour journey! Quite the contrast from his flight to India in March which landed him in ICU for 2 wks and in critical condition.

So to recap for the past two weeks…

Shortly after arriving home, I packed my things and traveled to my mom’s where I was greeted by Calvin the moment I pulled into the driveway. We were both so excited and just hugged each other and gave each other kisses :) We spent the rest of the week cuddling, having delicious meals (thanks, mom!) and I caught up on some much needed rest. Last week, I resumed my normal work schedule. It was so great to be reunited with my RL team. They are all so supportive and make me laugh constantly!

Now, onto the birthday boy…Tyson has continued to improve while at Nu-Tech. Stem cells are truly incredible and to witness their healing miracles is such a unique experience! Over the past two weeks, he has been able to sit in his wheelchair for longer periods of time which meant he needed the mask less and less (his breathing becomes an easier task while he’s seated upright). He received loads of stem cells through various procedures, many of which focused on his hands. While spending the 4 wks at Apollo, his hands almost completely lost all function. He is unable to use the joystick on his wheelchair which is incredibly frustrating for him. That’s his independence and having it taken away is upsetting. However, he was also unable to use his iPad because of the situation with his hands but after a few wks of stem cells and active OT, he’s now able to! Again, that’s important to him bc that’s his connection to the world, the other part of his independence. So, if he’s been able to regain that function, I believe he will soon be able to drive his own wheelchair again. Patience. Hard work. It’ll come.

Tyson still hadn’t eaten anything by the time I left. He told me he was craving split pea soup so once I got home, I sent him two little microwaveable bowls of the soup that I found at Whole Foods. I was SO happy to hear that Tyson was excited and willing to try a bite! He had no trouble swallowing, although he is still terrified that he’ll choke. He commented that it seems easier for him to swallow now than when he was home two months ago. To me, that’s a huge accomplishment; Tyson experienced the most monumental setback in March which nearly took his life and not only has he summoned the strength to overcome all of that , he’s even made improvements beyond recovery. I know it’s small, but I think every positive should be celebrated!

So all in all, Dr. Shroff is very happy with Tyson’s current state and says he looks great! She says that Tyson was very lucky to have survived his battle with the excess Co2’s and continues to comment on his unrelenting strength. It is vital that we stick to a strict schedule of the stem cell therapy in order to give Tyson a chance at recovery. We made the mistake of keeping him home nearly 4 months over the holidays/winter, mostly was because we were waiting to get into a special PT program at Burke that ultimately fell through. Regardless, we learned our lesson and thankfully we’re still in one piece. :)

I’ve been writing this entry over the course of the day. Tyson is home now and in bed. When he and his parents arrived, around 6:30 am, Cal and I ran outside to greet them. I immediately threw Cal up onto Tyson’s lap as he sat in the front seat while his dad assembled his wheelchair. I’ve never seen anything so sweet as their reunion. Cal hugged and kissed him and wished him a happy birthday and let him know he’s 37 today :) Tyson was in awe at how big Calvin had gotten. So very sweet. We sat and visited for a couple of hours and at 9:30, his parents headed off to the train station to catch the 11:15 train upstate. Tyson was ready for a nap and to be quite honest, Calvin and I were, too. I hadn’t slept at all because I was constantly thinking about how he was managing on the flight and so forth. The three of us napped in our bed for 2 hours. After lunch, we went to the park across the street to play some baseball.

It’s so wonderful to have him home and now we are finally all together as a family, as Cal puts it. I am feeling very overwhelmed and exhausted but I am sure things will look better in the morning. Tyson is very weak and cannot be left alone. Having said that, we recognize that we have so much to be grateful for and as I’ve said, although conditions are not ideal and this will continue to be a struggle for us, we cannot ignore how much progress has been made. I feel stronger when I’m with him and I’m certain the feeling is mutual. We will get through this.

I will continue to update as much as possible. On another note, I am 35 wks pregnant and the baby is doing very well and growing just the way he should be!

Also- a very Happy Birthday to my brother, Rob. I love that my hubby and my big brother share a birthday :) Two great guys!!

Thanks for your prayers!

Love to you all,

Ann & Tyson

Saturday, April 26

Hello all-

I am writing a very brief message for now to let you all know that Tyson is doing well and continues to make small improvements each day. What an absolute miracle stem cells are…and when paired with Tyson’s strength and fortitude, it’s no wonder he’s improved so much.

I have just boarded my flight for the U.S., leaving Tyson at Nu-Tech for two more weeks of stem cell treatment and physical/occupational therapy with his parents by his side. It is so painful when Tyson and I have to be apart, but it should be a testament to how well he’s doing and my confidence in his current condition because I would not leave unless I felt he was 100% okay. I am currently 33 weeks pregnant and Tyson and I feel it’s best for me to head home after 5 wks of being in India to get rest and to recuperate.

As soon as I get home, I will travel upstate to my parent’s where Calvin will be waiting for me :) I will write a detailed update about Tyson and his first week back at Nu-Tech once I get settled.

Thank you all for your continued support and prayers.

With love,
Ann

Monday, April 14

Hello all-

Happy Monday! Tyson is still stable and doing quite well. The doctors are impressed with his progress and are making efforts to get us out of here by tomorrow! Tyson had his PICC (peripherally inserted central catheter) Line installed on Saturday in his right arm. It’s similar to the Hickman catheter he had in his chest; tubes go directly to his heart. This was the last issue that needed to be addressed before heading back to Nu-Tech; his feeding is going well, his fever has settled, and now we have a new line for which antibiotics can be given. Tyson hasn’t been on his Lyme meds for the entire 4 wks he’s been here at Apollo Hospital because they don’t believe in Lyme or at the very least, don’t understand it well enough to treat it. That’s okay, perhaps his body needed a break to focus on other pressing issues anyway.

Something Tyson and I want to share with you all: I mentioned a while back about an incredible organization that Tyson and I have developed a relationship with over the past year called the Lyme Research Alliance. This wildly talented and passionate group is dedicated to funding researchers and scientists who work to develop accurate diagnostic testing for Lyme disease and a cure for Chronic Lyme disease. In addition to being an amazing support system for us as well as for SO many other families, the LRA dedicates themselves to promoting awareness, prevention and education about Lyme- they can even help you find Lyme Literate Doctors (which are sadly quite rare). The LRA also serves as an extremely helpful resource for information regarding current medical research.

Every April, they host their largest fundraising gala in Greenwich, CT. In February, Tyson was asked to be a part of a video called “The Faces of Lyme” which was to be shown at the event. A week before Tyson left for India, he, myself, and Calvin headed over to the Hyatt Regency in Greenwich for Tyson’s interview with the director and producer. As Tyson sat in front of the camera, Calvin and I sat together and watched from the sidelines. Tyson explained his story of Lyme disease, how it evaded 5 Lyme tests and how he was misdiagnosed several times. They wanted to know how Lyme disease had affected his life and his family. It was an emotional hour and Tyson did a fantastic job. His voice was raspy, and it was difficult for him to talk, but he told his story as best he could. At the end, everyone thanked Tyson for making the short trip and for participating.

At any rate, I wanted to give a little background before sharing the video with you all. I’m not the most tech savvy person, so if this YouTube link doesn’t work, you can still access it on the LRA’s website, http://www.lymeresearchalliance.org
I encourage you all to visit their website anyway so that you can learn about Lyme and also check out other photos and videos from the event.

After the video was shown, they asked everyone to participate in the Fund-a-Cure by raising their paddles wherever they felt comfortable, ranging from $250-$25,000. The room came alive and in just a few minutes, they raised $240,000! Everyone was so moved by the stories shared in the video. What the one gentleman said really resonated with me and Tyson. To paraphrase, he spoke about how as a man, you have a vision of how you want to be as a father, a husband, and a businessman but Lyme takes all of that away from you. The event went on to raise over $1,000,000

And now, it’s time for me to get some rest for our big move tomorrow :) Thank you all for your continued thoughts and prayers <3

More to come soon!

With love,
Ann & Tyson

Saturday, March 22

Hello friends and family-

I am writing to you all today to ask for your prayers and positive thoughts for Tyson. Tyson arrived in India last Thursday in extremely critical condition. His difficulty breathing was only exacerbated by the flight and elevation changes. Upon arrival to Nu-Tech, he was immediately given 3 bags of IV fluids and some oxygen. When he tried to lay down to sleep, he became unable to breathe almost entirely. They began stem cell injections right away and even after a day or two he attempted a session of physical therapy. The situation got increasingly worse as the hours and days went on and Tyson was unable to sleep and continued to struggle to breathe.

On Sunday, one of Tyson’s doctors at Nu-Tech called to explain their decision to move him to ICU at a larger hospital in New Delhi. They explained that at their facility, they would be unable to care for him at the level that he now required. The plan was to have him stay there for 2-3 days and sort of re-group himself (recover from his exhaustion and jet-lag) and return to Nu-Tech. As jarring as that was to digest, we all accepted it and off they went.

When they arrived at Apollo Hospital (one of the best in Delhi), Tyson and Dontay waited for several hours in the ER while Tyson was hooked up to IV and monitors. He grew increasingly uncomfortable and irritable to the point where he begged Dontay to begin to take all of the devices off of Tyson so they could leave. It wasn’t long after that they were finally given a room. The room was described as a “step down” from ICU and he shared it with 4 other patients.

What they discovered next is crucial: because of Tyson’s inability to breathe properly and efficiently, he has developed a build up of co2’s in his lungs. From what I understand, the excess co2’s can cause fogginess in the brain, slow down breathing altogether and can result in brain damage, coma or death. The normal range is between 35-45 and Tyson’s was coming in at around 115. Tyson’s weakened voice had been reduced to a whisper and eventually only the slurring of words. Tyson (and of course Dontay and Audrey) became very nervous and scared watching Tyson decline at a rapid rate.

Tyson was ordered to use the bi-pap machine, which works to remove the co2’s. As they leave his body, he is able to respond and function better. It’s a very large, uncomfortable and intense machine and Tyson was only able to manage a few minutes at a time (drs had ordered him to use it for several hours at a time). I asked Dr. Shroff to go give Tyson a pep-talk to try to encourage him to use the machine. She called Tyson, calmed him down and after speaking with another doctor, they decided he didn’t need the bi-pap as often bc his levels were decent. That made Tyson happy. She also told him he could come “home” to Nu-Tech the next day. That made Tyson even happier!

Around 2:00 am our time (their following day, aka checkout day) Audrey and dontay had called me bc Tyson’s co2 levels were elevated again to 125 and they weren’t sure what to do since they had been instructed that Tyson didn’t need the machine despite the fact that a few drs there said he did. Dr. Shroff then called me and we had a long talk.

She explained that Tyson needed to stay in ICU for 2-3 more weeks bc that was the amount of time that it would take to correct these out of control co2’s. I said, “Dr. Shroff–this will crush Tyson. He thinks he’s going home..” She explained that if he left, she could almost guarantee he would need to come back and that if anything happened to him at her facility, there wouldn’t be much they could do for him. She wanted Tyson in a facility where he would be monitored around the clock to be safe. She said he was in a critical state where it could go either way and it was best to keep him in ICU. She said she would continue his therapies there and once he was better, he could come “home”! Dr. Shroff asked me to come there as quickly as I could because Tyson needed me. I could already sense that he did, but hearing from her sealed the deal. She asked me to call and explain it to Tyson and help him understand that this was our only option. Naturally, Tyson was not thrilled and fought it for a minute but eventually said “whatever Dr. Shroff wants me to do, I’ll do”. Thank God.

My days are all sort of blending here, but I believe that the next day, 6 am our time, I received a call from Audrey and one of the drs caring for Tyson at Apollo. She told me that Tyson wasn’t responding to anything and was barely breathing. He was making no indication that he was present and could understand what was going on. The doctor asked me what I wanted to do. I listened to our options and gave him permission to intubate him and if that didn’t work, a tracheotomy. I also gave permission for a feeding tube. Basically, do whatever’s necessary to keep him alive.

Feeling completely numb, Audrey and I discussed everything and we were in agreement with the decisions I had made. Through their night, they had him hooked up to the bi-pap and he was able to do 5 hours and 38 minutes out of the 8 hrs prescribed which was outstanding. About an hour after being hooked up, I asked to speak w him, even though I knew he couldn’t respond. I told him how strong he was and how much Calvin and I loved him and needed him. Dontay told me that Tyson’s eyes opened when he heard my voice. A response, finally. Thank you, God.

I scrambled to get my affairs in order to head to India. We are truly, truly blessed with the most incredible friends and family who helped organize my last minute trip, expedite my visa, and help me get food to bring. My dad had come down earlier in the week and thank God for that. I was an absolute zombie and he took care of me and Calvin when I couldn’t function.

Currently, Tyson is stable. He is responding in a timely manner and his co2 level is around 60. He developed a fever so they think he has a chest infection and an ultrasound showed fluid in his lungs. They believe this is due to his shallow breathing and in theory, it should clear up as he improves.

I am about to board my plane in 30 minutes. Calvin is upstate with my parents and knows mommy is on a mission to see daddy and give him kisses. Tyson’s dad is on his way too in the next couple of days, once his visa arrives. Audrey and Dontay have been absolutely incredible in supporting Tyson. The conditions are less than appealing; sleeping in chairs and sometimes going days without sleep. This is a horrifying ordeal to witness and they’re both being very strong. I am 7 months pregnant at this point but my doctor gave me permission to fly. I did a test before I left (just a routine test I knew I’d miss while in was gone) and all is well. I’m 28 wks and will plan to stay with Tyson as long as he needs me, but I cannot stay longer than 35. I joked w him that I know how much he misses me, but this was a really crafty way of getting me to India ;)

I know I’m forgetting things…but basically know that Tyson is fighting. He is absolutely scared but I know he’s not going to give up. That’s not in his nature. Please continue your prayers. We appreciate all of your support.

Love,
Ann

Tuesday, December 10

Hi everyone-

Yesterday, we had our first appointment with Dr. Amiram Katz. He is such a great guy; very concerned, very easy to talk to, and just overall very caring.

It was nice to have things explained from a neurological perspective, although I didn’t exactly like what I heard. The first thing he said was that the Lyme has caused an auto-immune response in his body. The auto-immune response means that his body is attacking itself, specifically his motor neurons. It believes they’re a threat to his body, so they’re destroying them before they make their connections to his muscles and as a result, his muscles waste away. He also said that his body has overactive glutamate at the site of its nerve cells. In the most basic terms, the nerve cells send signals to each other and to organs of the body w transmitters like glutamate. It’s supposed to be a quick step but if the glutamate lingers, as in Tyson’s case, it becomes toxic and results in cell death. This scenario is typical in ALS patients. This can damage the brain (as we saw so clearly in Tyson’s first brain scan in India) and to his entire Central Nervous System. Dr. Katz has prescribed Tyson a medication that is typically used by Alzheimer’s patients because it works to protect the brain. He said not to be thrown off by the word “Alzheimer’s” and that basically anyone could take this medication, it’s not a ridiculously strong or potent drug. Dr. Katz’s goal is to stabilize Tyson, first and foremost and to protect from further onslaught in part by boosting his immune system. We first saw stabilization in Tyson’s condition when we began the stem cell therapy and Dr. Katz acknowledges that and concurred that the only chance for survival in his case is to continue with the stem cell therapy until Tyson’s body is fixed. Once again, what the stem cells are doing is repairing the damage throughout his system and regenerating new cells (or soldiers, as I like to call them) to fight. He drew some labs to see exactly what approach he wanted to take. He is also adding Low-Dose Naltrexone, which works to normalize the immune system and halt the progression in diseases like ALS.

He was surprised to hear Tyson survived the bi-lateral pulmonary emboli last fall and said we are lucky to have gotten through it. One of the tests he’s doing is to a genetic clot deficiency test to see if he’s predisposed to clotting, which we suspect he is not since we safely made it back and forth to India 3 times.

I had flashbacks during the meeting of our painful neurology appointments from the past two years. I hate rehashing piles and piles of test results and findings and I hate hearing words like “axonal damage”, “motor neuropathy”, “denervation” and “this medication has been proven to prolong patient’s existence”. It’s brutal to hear once, let alone repeatedly. However…the difference here with Tyson’s case is that this has all been caused by Lyme disease and because of that, it is possible that it can be reversed. The “top neurologists” we met with prior told us it’s irreversible because they simply don’t understand how Lyme works. In my opinion, if Tyson truly had ALS with no Lyme interference, he would not be seeing any improvements like the ones we’re seeing. And so because of that, we remain hopeful. And no, I don’t think we are crazy or drunk with optimism…I truly believe we will make it. It’ll be a miracle and his story should be studied because as scary as this sounds, it could happen to anyone else. He will beat the odds.

So, here we are. Again. We can’t deny these neurological findings- they are factual. Also, we can’t deny the remarkable, almost unexplainable progress we’ve made with the stem cell therapy. It is the ONLY method of treatment that has been able to stabilize him and allow for small gains. So, our doctors are all in agreement, we need to keep going with the stem cells (as we had planned to!) because it’s seemingly the answer we need.

It was a quiet ride home, which reminded me of the countless doctors visits last year. We regrouped today, trying to make sense of every last bit it all and we are still up for the challenge. We can’t wait for the new year when we can be super aggressive with physical and occupational therapy, we are going to do everything we need to do with his antibiotic/supplement protocol and just stay positive and above all, control what we can control. We are both highly competitive people and really don’t like losing ;) Bring it!!

Once again, I hope I’ve explained things okay…if I messed something up and notice it down the road, I’ll make sure I clarify myself :)

Thanks to you all for your continued love and support and for all of your kind words regarding our progress and our new addition! It’s all a little scary, but we will make it.

All our love,
Ann & Tyson

Sunday, December 8

Hello friends!

It’s been quite a while since our last update; my apologies! Let me see where we left off…

The last two weeks in India were productive as usual. Tyson continued to work hard during his PT and OT sessions and received a whole lot of stem cells. Dr. Shroff explained to us that there is a constant battle going on in his body: the Lyme has tricked his body into attacking itself by killing the motor neurons which send messages to his muscles to grow and function, while the stem cells are going in and cleaning up the mess (damage) the Lyme has caused, regenerating cellular function and allowing the Lyme antibiotics to work effectively and efficiently. So, we need to keep at this aggressive pace until we get ahead of the curve and outrun the Lyme bacteria. I hope this makes sense to you all. It’s possible (and we are optimistic) that the Lyme bacteria is slowly going away but still so much damage remains in the wake of its destruction.

The doctors ordered a chest x-ray for Tyson right before we left. Some of you may recall that Tyson was hospitalized last November bc he was gasping for air…Tyson’s breathing has gotten slightly better since then, but he struggles still once in a while. His breathing issues were initially the result of bi-lateral pulmonary emboli (blood clots in both lungs) and now are most likely due to his chest muscles weakening, thus making it more challenging to take deep breaths. Anyway, as a result of the blood clots, part of the lower section of his left lung is now dead and he has multiple infarcts (dead spots) on both lungs. The infarcts are probably still partly to blame for his current breathing issue. We were initially told that these infarcts would always be there. The drs in Greenwich put him on Coumadin to thin his blood a bit (which he was able to stop taking once we started w Dr. Shroff’s treatment). I had Greenwich Hospital send over last year’s X-rays for comparison and they believe some of the infarcts are going away! He still needs to work on strengthening his chest muscles by doing breathing exercises and we still need a pulmonologist to do an official comparison and updated progress report, but this is another potential gain for us!

And as you can imagine, we were so eager to get home to see Calvin. The 4 1/2 months we’d been away from him over the course of the year had caught up to us (and him!). We arrived home the day before Halloween and had the BEST reunion with him and every day since our return has been spent re-grouping as a family. So wonderful!

So once we got home, we worked to get Tyson back into out-patient PT and OT at Burke upon our return. However, we learned that we had exhausted all but 5 visits allowed by our insurance company, so we have been spreading them out to one visit a week until the end of the year. This is incredibly frustrating on many levels; Tyson’s condition is critical and should be given different consideration than the “norm” by our insurance company. He requires therapy at least 5 days a week in order to see any improvement. The wonderful thing about his state right now is that he responds SO well to therapy; conversely, without it, he remains stagnate and slightly declines some. I seriously hate venting like this, but I feel it’s important to explain. Before our last trip to India, our doctor at Burke told us they’re starting an “in-between” program that allows 5 days a week of therapy but you don’t have to be in-patient at the hospital. This is so perfect for Tyson because it’s the level of care he needs without living in a hospital (which doesn’t help him mentally or emotionally). Hopefully we can get this rolling soon!! My next mission is to find a service who could take him there every day so that I can continue to work. Wish me luck!!

Last Monday, we met with one of our amazing Lyme doctors, Dr. Liegner. I have been keeping him posted with Tyson’s progress but we hadn’t seen him since the week before our first trip back in January. He was very impressed with Tyson’s brain scans and his overall condition compared to last year. He is running more Lyme tests to see if anything has changed. I asked if there was such a thing as a test that could detect the actual levels of Lyme bacteria in the system and he said “not exactly”…this test hasn’t been developed yet. However, the labs he’s running now will help clarify a few things. The BEST way for us to measure Tyson’s improvement is by clinical progress; seeing him move more, etc.

Dr. Liegner also urged us to have a neurologist take a look at our case because of the devastating neurological manifestations the Lyme caused. It’s important for a specialist to track progress from that end. Our trouble has been in finding a Lyme literate neurologist. Most neurologists we’ve seen have told us we’re crazy and “Lyme doesn’t do this”, and to get our affairs in order. Dr. Katz in Orange, CT is a board certified neurologist who understands chronic Lyme disease and how it manifests into neurological disorders. We got their first available appt at the end of January…but thankfully, their office called yesterday and he can see us tomorrow!! Another expensive appt but hopefully insurance will cover it. Regardless, it will be highly beneficial for us. Also-Dr. Katz has sent several patients to Dr. Shroff’s clinic AND he recently gave a presentation at the ILADS conference in San Diego. It’s so important to work with doctors who are understanding and sympathetic to our journey, rather than tell us we are wasting money trying to fix him.

I’ve been thinking a lot lately about what I am grateful for and what we as a family are grateful for because I think gratitude is such and important factor for healing and being happy. I think about where we were a year ago. Life got really scary and everywhere we turned for help, we were given devastating diagnosis’s and told to prepare for the worst. We wouldn’t be where we are now without the love and support from our family and friends. Our friends and family in Upstate New York as well as our Polo family organized huge fundraisers that have allowed us to pay for doctor’s visits, expensive testing, hospital bills, leg braces, rent, etc. Thank you all for that–we never properly had the chance to thank each of you who was involved and I know the numbers are in the 100’s. Tyson and I were incredibly touched by the generous donations and support you’ve all shown. Thank you for the dinners you sent to our house or groceries you helped buy…one less thing I needed to worry about at the end of an exhausting day. Thank you for the phone calls and house visits, too! And thank you to Cal’s amazing daycare who take such great care of him and who keep us posted on how well he is doing in school while we were in India. And to “our girls”, Katherine and Vanessa who care for him while we we’re away AND who continue to help us all the time so that I can continue to work. Ok- this is beginning to feel like an Oscar acceptance speech, but bear with me!

We’ve made an incredible amount of progress in 12 months and are so grateful for that. Thank you to our drs who’ve supported us and fought for us, like Dr. Bouboulis, Dr. Liegner, Dr. Murphy, and Dr. Horowitz who introduced us to the incredible Dr. Shroff on the other side of the world. We are so grateful, too for the friendships we’ve made with the staff and other patients at Nu-Tech. You’re all so inspiring!!

So when people ask how we’re doing- the best way to respond is by saying “great!” We have a long, long way to go and we are by no means “out of the woods” yet but we are confident and extremely optimistic. Things are still difficult and frustrating at times but I know Tyson WILL walk again and be able to cook us dinners, play golf, and play catch with Calvin soon!! I can see it!!

And finally, speaking of happiness to look forward to…Tyson and I want to share some more amazing news with you all!!! We are expecting our second child in June!!! We are so happy and Calvin is very excited to be a big brother :) We always wanted Cal to have a sibling. Everything happens for a reason and this is truly a wonderful blessing.

So as always, thank you for keeping Tyson, Cal, and myself in your thoughts and prayers.

More to come soon!!

xx,
Annie

An update…

Hi everyone!  I tried to post this yesterday but had difficulty with the internet connection….

Tyson and i have just boarded our plane to India once again. This time for 4 weeks. I figure it’s as good a time as any to update you on where we left off in April after our first 8 weeks of treatment and on Tyson’s current state.

Tyson stopped declining after about a week of the stem cell therapy. Once he was stable at that point, we could see improvements almost every day in his physical and occupational therapy sessions (I’ll post videos of his progress later on…). Dr. Shroff explained to us that in lyme patients, the stem cells work to strengthen the immune system so that the lyme antibiotics can function properly and effectively as well as repair any damage caused by the lyme bacteria. We left India with great improvements, NO decline, and full of hope.

We were instructed to maintain our PT and OT work once we got home because by doing so, the body would be training the stem cells and therefore Tyson would benefit the most from them. We met with Dr. Horowitz and Dr. Bouboulis on the Monday after we got home. The following day, we called Burke Rehab hospital in White Plains to get him admitted for in-patient. Tyson was a patient there last summer for 6 weeks and was discharged because he was declining so rapidly. So, this time around the doctor at Burke, Dr. Stampas wanted to take things slowly and have him start out at the out-patient facility first and gradually work his way up to full-time in their in-patient hospital where he would have physical and occupational therapy sessions 6 days a week rather than 3. Dr. Stampas said that if he did well and showed no decline, he would have him admitted to in-patient (which is what we want, as you can tell- because it’ll be like boot camp :) )

We were placed on a two week waiting list which turned into 4. In that time, due to inactivity, Tyson got a little weaker than when we were in India. After a couple weeks of doing our out-patient therapy sessions, we spoke with Dr. Shroff and expressed concern that he was weaker. She agreed with us that it was more than likely a result of being inactive for the four weeks when we got home. She said to give the therapy 1 more week and if Tyson wasn’t feeling better- to come back to India early! In that following week, Tyson did very well at Burke. His core was stronger, he was doing more to help with his transfers and had more energy! He had some not so great days where he just felt exhausted and weak but overall he did very well.

So as of right now, Tyson feels he is just about at the same level as when we left…with the exception of his hands which feel the weakest. We feel good. The fact that his overall health hasn’t declined is an enormous accomplishment!

We are excited for this next chapter. We miss our India family and we are looking forward to the treatments, the workouts and to seeing improvements!

More to come when we land.

Love,
Annie and Tyson

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A brief history

** I wrote this for his first fundraiser hosted by his family in February 2013. It briefly depicts our story up until we left for India. **

In March of 2011, my husband Tyson began feeling very weak and fatigued. Thinking he might be out of shape, he set out for a jog. After only a short distance, Tyson felt the arch of his left foot collapse. We sought immediate help from an orthopaedist in Greenwich. X-rays came back normal so the doctor suggested we meet with a neurologist. In the weeks to come, the pain eventually ran up his leg, across his hips and back down the other leg. Neurologists initially thought he might have an auto-immune disorder so they recommended he try a course of IVIG. This proved to be unsuccessful and all the while he was gradually getting weaker. Doctors then recommended trying a few rounds of plasmapheresis. This is a very invasive procedure that involves removing blood from his body, separating the plasma and exchanging it with synthetic plasma. In the Fall of 2011, we tried about 10 days of this treatment with Tyson feeling only a slight bit of improvement which lasted only a couple of hours.

Unsatisfied, but not discouraged, we then sought help from one of the nation’s top immunologists, Dr. Denis A. Bouboulis in Darien, CT. He partnered with another neurologist to order MRI’s of Tyson’s brain and spine, a lumbar puncture, and a battery of blood tests, which also included an extensive Lyme test. Once again, all tests came back as though Tyson was the picture of good health, when in fact, he was still declining. We were advised to meet with one of the world’s top neurologists at Columbia University, Dr. Hiroshi Mitsumoto, who explained that Tyson had developed a motor neuron disease called “Progressive Muscle Atrophy” and would eventually lead to Lou Gehrig’s Disease, or ALS. Still, Dr. Bouboulis thought it would be prudent to try a more aggressive round of the plasmapheresis backed up with IVIG, in the event that it was perhaps an auto-immune disorder mimicking a motor neuron disease.

From January to March of last year, Tyson underwent roughly 25 sessions of plasmapheresis and saw no improvement. In the spring, he began an incredibly aggressive course of IVIG that lasted several months. He was still getting weaker. Tyson spent 6 weeks of the summer at Burke Rehabilitation Hospital in White Plains. There, he had daily physical and occupational therapy sessions to help regain some of the motor skills that were diminishing. He was ultimately discharged because the doctors and therapists were seeing no improvement and Tyson was steadily declining. With a dreary prognosis “on the table” and virtually nothing to lose, Dr. Bouboulis ordered a more elaborate Lyme test from a private lab called Igenex in California. Not controlled by the CDC, Igenex is able to test for all strains of lyme including any co-infections. In September, Tyson tested positive for Lyme and two co-infections. Dr. Bouboulis immediately started Tyson on Lyme antibiotics. One of the Lyme medications is a 28 day regimen given intravenously through a central line catheter in Tyson’s chest. At the end of the 28 days (and because the Lyme antibiotics can be so taxing on the organs), Dr. Bouboulis referred us to Dr. Kenneth Liegner and Dr. Richard Horowitz who are renowned pioneers in the study and treatment of Lyme Disease.

At this time, Tyson had a nerve biopsy on his left arm. This would be able to show the relationship between the muscle and the nerve and if there was any indication of a neurological disorder. This test showed nothing, which is consistent with a motor neuron disease. Tyson and I were told to “get our affairs in order” and to “get comfortable”. Trying our absolute best to ignore this prognosis, we met with Dr. Liegner who ran more tests and added more antibiotics to his regimen. Dr. Liegner made it clear to us that Tyson did in fact have chronic Lyme but was not certain that the antibiotics would work. It’s possible that the Lyme bacteria were left in his body long enough to cause irreversible damage.

In December, we met with Dr. Horowitz. He explained to us that the antibiotics would not be enough to heal Tyson. He was in agreement that the motor neurons in his body were dying and said it should be our first priority to address that. It is a theory of many experts that the Lyme could have possibly triggered a motor neuron disease. With that, he then mentioned Dr. Geeta Shroff’s stem cell therapy in India. Dr. Horowitz has sent several patients to her clinic in New Delhi and has had a strong percentage of them benefit from the treatment. He explained that this was our only hope. We immediately contacted Dr. Shroff and upon her request, sent all of the necessary medical documents, tests results, notes, etc. After reviewing with her colleagues, she invited us to her clinic to begin treatment. She has made no guarantees but offers a strong attempt at stopping the progression of this disease and hopefully reversing some of it’s damage. Tyson and I truly cannot ask for more.

Currently, life is not easy for Tyson or for our little family. Tyson is virtually 100% dependant and has been in a wheelchair since the Fall of 2011. He is strong in spirit. Every surgery, test, procedure or set-back has been met with Tyson’s courageous and willful attitude. We struggle from time to time, but we also laugh a great deal, too. Our son, Calvin has just turned 2 and absolutely adores his daddy! They spend quality time every day working on Cal’s golf swing and listening to music together. Calvin has a big heart and loves to help his mommy whenever he can (so long as it’s not during baseball, golf, or basketball practice, of course!)

What has been really remarkable throughout all of this is the overwhelming support we have received from our family and friends. All of the wonderful gestures made to make life easier for us, all of the prayers, laughs and words of encouragement have helped give us the strength to keep strong and keep moving ahead. We are so loved. And so, as we continue on our journey, please keep us in your prayers and know that we are so grateful to have you in our lives. Thank you.

Love,

Annie

Welcome!

This is long overdue. We wanted a way to share our journey with our friends and family. We also feel it is important for people to hear Tyson’s story; it is a true testament of what a strong heart and equally strong sense of determination and will can accomplish.

I will update as frequently as possible and to start, I’ll backtrack a few months to share the beginning of our journey and of course include detail of our incredible trek to India.

I believe that the best way to start is by saying THANK YOU to everyone who has helped us along the way. We are so grateful for the love and support we’ve been given and it has helped US have the strength to press forward and find a path to healing. We would be lost without you.

With love,
Ann, Tyson, and Calvin

 

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