Wow, it's been awhile

I cannot believe that I've allowed so much time to pass between posts. Unfortunately, the fact that things have not really changed is a significant reason why. Yes, I do appreciate that things are not getting worse for me, but I desire so much more than that. My calcium continues to limit the amount of vitamin d that I can safely use. I am trying pharmaceutical grade K2 and EDTA, with some success, just not enough. I am now considering trying colloidal silver. I have read some interesting stories on the internet, and have joined a couple of groups on Facebook.  Trying to remain optimistic and hopeful, without setting up for a significant crash if things do not work as desired....

Just completed the 2nd year on the protocol

Well as the title says, two years on the protocol have passed. I am not doing as well as I would have hoped have hoped, especially considering how quickly the initial improvements happened. There have been some set backs, timed where I was certain that I would never get better. I have managed to continue along and now find myself filled with hope once again. That is not a feeling that has been present in recent times. There is nothing definite or affirmative that I can point to justify these feelings. That does not mean that I am less certain or doubtful that things are going to be positive, work out. It’s great to have hope, and this does not feel like blind faith, there are several pieces of information and direction that I have been given from a couple of different medical professionals familiar with the protocol. While each is helpful on its own, hopefully the combination of all three will spark dramatic improvements for me. Fingers crossed that next month the post will include information about my calcium being down at the very least, additional good news would be desired and welcomed of course.

Jan has come and gone

Well January 2019 is now in the books. As I look back at the month, the following events happened. I started the protocol under a trained medical professional. My current doctor has been trained by Dr. Coimbra, in addition, her medical training provides additional options and alternatives. The first meeting left me very excited and hopeful, not only with the information provided, but also with possibilities. Unfortunately, nothing has happened just yet, but I am trying to remain optimistic. Another slight chance is increasing my water intake. I can understand that increasing from 3L per day to 3.5L may not seem like much. I do believe that is a factor in lowering my creatinine. It's still in the upper range, but is under the upper limit. I do appreciate that. The other change is adding swimming 3 times a week. For those of you that read my earlier posts, I had videos of me walking. I continued recording those videos in 2018, but very few of them ever got posted as I felt that they showed a decline. Now I am wondering about videos of my swimming. We will see, depending upon how my swimming improves and I am able to find an individual willing to take a video of me.

A little more about my "swimming".  This is my 3rd week. The first day in the pool was really more like water aerobics, with half a pool length of swimming done twice. The next time in the water I did the half lap 6 times, and found someone to shoot a short video of one of my 1/2 laps. From there I would increase the number of laps, but did more walking and such to help with mobility and balance. That was until today, when I got my latest test results, which showed my calcium going very much in the wrong direction. The days that I do not swim, I participate in the MS gym, which is good exercise and helps with balance and mobility, but is not really strenuous. 30 minutes of vigorous exercise is necessary to lower calcium, so today I switched to swimming laps in the pool. I did a full lap 4 times, and the rest of the time was swimming from the point where the shallow meets the deep end to the wall, and back. Once I reached the shallow end, I would stand and take like 3 steps towards the shallow wall, turn around back towards the deep end. Those 5 steps or so I would use to catch my breath, rest my arms, before swimming to back to thew wall and repeat the process. I lost track of how many laps I completed, need to do a better job tracking in the future. I am planning on doing the blood tests once again in two weeks, and try to see if these changes, additions, are having the desired effect. On days like today when I do to the pool, I do move a little slower in the afternoon, but I do feel it's have a positive effect.

So in a couple weeks I will have an update and share the results, fingers crossed they are positive

The holidays have passed one again...

Well Thanksgiving, Christmas, and New Year's has come and gone. I cannot believe that 2019 is already upon us. Unfortunately, it was not as successful as I had hoped. I will try to remain positive about the protocol and the possibility of getting better in 2019. At the end of last year I published a collection of my walking video through the year, I should do the same shortly. Just not as inspired as it seems instead of showing improvement, feels that the videos show decline. This year I discontinued working with individual that I began the protocol with as I felt that he has lost his way. That was later confirmed as Dr. Coimbra himself removed his name from the list of trained and recommend medical professionals. So I continued without any outside assistance for awhile, but then discovered another medical professional that stated a willingness to help. Granted, this person was not formally trained by Coimbra, but seemed to be knowledgeable and sincerely interested. Unfortunately it later seemed that I was not a sufficient priority, so currently without any outside assistance once again. There are a couple of possibilities that seem promising and possible. There is a Dr. from Portugal that I have been exchanging messages with, unfortunately a face to face appointment is necessary to begin the protocol.  That is not impossible, but a bit tricky, so will have to wait and see if that will happen. In the meantime, I am trying to arrange having a medical professional guiding implementing the protocol. It has not yet happened, but trying to remain optimistic.

Waiting to see what 2019 will have in store, hopefully something positive....

Sorry for the extended silence

Wel it has been far too long since my last post. I have many time thought, even planned, on writing something sooner but obviously that never happened. Sure, getting caught up with summer vacation was a factor, and the process of getting back into a routine afterwards, but I cannot say that was the sole reason. As I have stated previously, one of my main intentions for this blog was to represent the entire journey of the protocol, not just the success at the end. My previous posts have covered some of the challenges and complications. I think it’s fair and accurate to say the protocol is difficult and tricky. There is a fine balance between PTH, vitamin d, and calcium. There are others as well, but that seems to be the big three. Those three are in addition to the already present challenges due to the condition. I cannot say that it is true for all, but it does seem that there are others in a similar situation. The protocol requires consuming 2.5 L of water, everyday, which would be challenging for most, but is compounded by the loss of bodily functions due to the disease. In addition, a substantial amount of elemental magnesium is necessary, which can negatively impact bowel control.

This disease takes away memory, strength, mobility and replaces it with pain and discomfort. I think it’s very difficult, more like impossible, for someone without MS to fully understand extent of the continuous pain. The pain combined with the quantity of water makes for less than enjoyable nights. Despite sleeping, going to bed at a reasonable hour, to wake almost as tired as the previous day. To roll out of bed knowing that this day will be draining physically and emotionally once again. Not wanting to open up and share with those around you, thinking “What’s the point?” or not wanting to feel like you are burdening others with your problem...a problem with no solution. It’s a bit of a self fulfilling prophecy: not sharing with those around that want to hear, listen, support and at the same time feeling forgotten, alone.  In a previous post I stated one loses hope with MS. I understand the need to open up and include those around me to help combat that feeling. Unfortunately, its not that easy when it feels that everything is just one problem, one challenge after another. Feeling like it might just be easier, better for all, if I just keep these things to myself, so that way only I have to deal with them.

I want to feel as if I am not alone in dealing with this condition, yet somehow I am reluctant to include others, open up and share all of the trials and tribulations. I suppose partially because I feel it will seem like I am constantly complaining. Another aspect is believing that if those around me really knew the whole picture, they might feel the need to feel pity. Even more troubling is the possibility of making sad those around me because there is really nothing that can be done currently. It feels as if that would cause the sadness to expand unnecessarily.

I want to be part of the solution, not the problem. Hopefully this blog, the protocol can prove to be the solution for me and hopefully many others...

Looking forward to May and the days that follow...

Well May is here and having hope once again. I have been struggling with my calcium and creatinine levels. It has been suggested that I tried increasing the quantity of my daily water intake. So I am now trying to do 3 liters of water each day instead of 2.5. So far, this has been successful. I think ending up short when striving for 2.5 was a problem; however, but the additional 0.5 liter gives me a little more wiggle room on those days when I do not obtain the desired goal. It has only been a couple of weeks, but both numbers have gone down. Not substantially, but I am curious to see what it I like after a couple of months, hopefully even better.

 

So getting my test results back at an acceptable level is the first bit of good news. Another change is I am now working with Dr. Anderson from St. Louis. During our first meeting, which was over an hour, long, he took the time to explain what we would be doing, and why. More importantly, he also described what could be done when the expected results did not happen. In addition, he had me do several tests that I had not done previously, and the results were very encouraging. One of the tests was the ANA, which indicated that I should not require additional quantity of vitamin d for the protocol to be affective. The other was the 24 hour calcium test which revealed that my body is safely able to process the current level over vitamin d, and there is room to increase once again, safely. So I have once increased the amount of vitamin d. I am not yet at the levels where the protocol will be effective, but it does seem like there are benefits to the additional amount. There is some reassurance to having an understanding as to the question “why do much vitamin d?” As Dr. Anderson said, I am once again on the right path, a comment I really believe and feel to be true. As said above, I am once again excited and looking forward to the future. Cross fingers, and let’s see what’s in store for me.

April is here, yeah Tax Day....not!!

Well April is here, and continuing along with the protocol. I am checking my calcium every three weeks, and so far everything is looking good, or at least not bad. I do wish my calcium was slightly lower, but at least it is not at a level in which I need to be concerned or stop the protocol once again. so nothing significant to report as the moment. It is good that there is nothing negative to comment about this time, it is frustrating that there is nothing positive as well. So going to try to stay positive, fingers crossed, and hope for the best. I have a couple of walk video that I will post shortly. Once again, do not really see anything different between these and previous once. Remaining grateful that there is nothing negative, but slightly disappointed that they do not include anything positive.