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.

time is flying by...

So February came and went, and March is almost finished. I do wish that there was some news to share. At the same time, not having anything to say could also mean that there is nothing negative to report. Trying to look at things positively I suppose. My calcium is still a challenge. At least it is not above what's considered acceptable, high, but not dangerous or alarming. Still trying to remain hopeful and optimistic about visible and noticeable improvements. Other than that, just continuing along day by day. I want to see, feel, know, that things are getting better. Trying to be patient, just not exactly my strength...

Goodbye January

Well the month of January for the year 2018 has come and gone, in what feels like a blink of an eye. I do wish that my progress from the protocol was happening as quickly. My calcium is still high, not over the threshold, but bumping right up against it. For that reason I am still taking significantly reduced amounts of vitamin d. I mentioned previously that I was adding PectaClear. I will acknowledge that the first couple of times it left my legs feeling like the were encased in lead. Walking was so difficult, and I fatigued significantly faster. After a month the experience is different. I am not sure if this is because I am getting accustomed to PectaClear, or maybe it is being effective, and the heavy metals are being removed from my system. So without the lessening of these undesired compounds in my system, my body feels negativity because of the PectaClear. I have also added Disolvatol in response to the kidney stone. I am also hopeful that this will help reduce the calcium levels in my blood. I was supposed to have a doctors appointment that had to be rescheduled because of an unexpected event on his part. So no date yet when that will happen. When it does I will request for the some tests to monitor how my calciums levels are currently. Hopefully they continue to decrease so that I can slowly increase my levels of vitamin d. I am trying to be patient and remain hopeful, but it is difficult when one is not noticing any improvements, or reason to be excited. I have been timing my walk from the car to the office in the morning and from the office back to the car in the evenings. Trying to use this as an indication of how I am doing, how things are progressing. Something a bit more measurable than my saying I am "feeling good". For the past month my times I have higher than I would have liked. While not my worse times, usually 15-20 seconds slower than what I would have called my previous "normal" times. Last night I was 20 seconds faster in the evening than my morning time. It was the first time in over a month my time was back within my previous "normal" range. I am really curious to see the time next week. Was this an aberration,  or will times remain in the previous range. Better yet, will the time to continue to decease, giving me a positive indication that I want, need.

hoping the best for the new year

Well we are nearly two weeks into the new year, already. So I completed my first blood test, and unfortunately my calcium score increased to 10.1. So while its still in the "normal" range, it moved in the wrong direction, and is vey close to the upper limit of the range, 10.2. So a little disheartened and frustrated as I am really trying to do everything correctly, and yet my scores are going in the wrong direction. This was with only 30k of vitamin D, so very far away from desired amount of about 80k that it seems will be required for my body to really improve from the protocol. So after a temporary frustration and being down, now trying to figure out what else can be done to lower my calcium score as  stopping the protocol is not an option. In addition, taking this small dosage is not really helping me get better. Sure, it might be preventing me from getting worse, but that's not the same thing as getting better, getting a quality of life back. So while I had the disappointment of the lab work, I did receive my shipment of magnesium and PectaClear. The day after taking it, I have noticed that my legs feel so much heavier, and my walk is slower, much more difficult. I have looked in the groups, and other people have noticed something similar, being told that is an indication that it is actually working, doing something. I am not sure if that really is the case as it is too early to notice any differences. I will remain hopeful that this feeling are because of something positive happening, moving me one step closer to getting better. I cannot really think of anything else of significance to share.  So let's see what the next lab work shows, and wha new challenges and obstacles there will be to conquered while on the protocol. Thankfully I think I have stopped losing weight, but it seems that I am regaining it slower than I would like, unfortunately.

2017 in review

As I was researching the protocol I was able to find plenty of testimonials about how well someone was doing after being on the protocol, typically for years. Unfortunately, none of these included a depiction before starting, or updates showing improvements while one the protocol. providing this type of information was one of my main motivations for this blog. Giving some insight of the starting point and the journey, just the final outcome. Admittedly, I have not done a very good job sharing the bad ties, my difficulties. It has been brought to my attention that this doing more harm than good. People need to understand when they are having a bad day, a rough time, that they are not alone. That while it might not be desirable, the rough times are a typical, unavoidable, part of the protocol. That it is only temporary, that the final goal is still obtainable. 

So here are some of the videos I took during showing how I walked.. Some days are better than others. Once again, I am trying to stay positive, optimistic about 2018.

Before started the protocol

First month

The second month

The third month

Month Four

The next month

End of year

So there is a glimpse of 2017. Once again, trying to document the before and during of the protocol for others trying to learn more about the protocol. So here is hoping that next year the videos will include a little less of a limp, increase stability and a faster pace.

Happy New Year

Amazingly another month has passed since my last update. There are some positive things that have happened between back then and now. My latest blood work showed that my calcium levels were back within the acceptable range. Sure, in the high part of the range, but back within acceptable levels. So Michael has started me back on the protocol, gradually. At the same time, even with the year that I have been on the protocol there have been some modifications. As the medical professionals participating, as well as the number of MS patients, additional knowledge is obtained. When I started the target level for Vitamin D was 3,000 units per kilo. Now, that new level seems to be no more than 1,000 per kilo. While the Vitamin D is a critical component to the protocol, it seems that maybe the B2 was over estimated and that Magnesium was more important than originally believed. It is very possible that in 2019 I will be posting something completely different as more is learned, and more individuals get a sense of normalcy because of the protocol.

Previously Michael suggested that I take something called PectaClear:
In the past I decided against because I do not feel that it would really be beneficial
for me. Admittedly, the cost of the product was a factor in my decision to not use. It is not cheap. So why am I going to try it now? I'll try to explain. When I started the protocol, there were immediate improvements, some of them very obvious to others that were not even aware that I was doing the protocol. So not only did I feel things were getting better for me, others were making comments that confirmed whatI was feeling. I was certain by this time I would be feeling and doing much better than I am currently.  I understand, accept, and truly believe that there are good and bad days on the protocol. That does explain why I am feeling that I am actually worse off now than I was a year ago. At the same time, I need to remind myself that I was off the protocol for over 2 months, which is significant. So now I am going to follow almost all of Michael's recommendations. It does not make sense to be frustrated or disappointed with the results when I am not willing to follow all of the advice. I say almost because there might be suggestions that I decide against. t this time, that is not the case. I am actually thinking that my not taking PectaClear previously was a mistake. The other day Michael sent me an article about the importance of probiotics for helping MS patients. I read it, and thought to myself that it was interesting. He even included a suggestion for me to purchase and take. I shelved it into my memory for later. For starters I do not like making too many changes at once. It makes it difficult to determine what was the reason when something improves, and more importantly the item to avoid because of the negative impact. Ironically, last night I remembered something significant. As I stated earlier, when I started the protocol, there were significant immediate improvements. When, at that time Michael has me taking probiotics because he felt that it would help get my weight back down. He felt that I was carrying too much weight for my frame in general, keep in mind that he is more of a nutrition specialist. He believed that losing the weight would also help my walk. As the weight came off, I stopped the probiotics. Maybe the significance in including probiotics in the protocol, at least for myself, may be one of those things that is not yet fully understood. So I will still stick with the PectaClear, but I will be sure to keep the probiotics in the front of my mind.

So while I am not happy with where I am currently physically, I am trying to remain hopeful and optimistic. Admittedly, it is difficult and I am not always successful...but I am trying and will keep trying. Here is hoping that 2018 is a great year for everyone, especially for those on the protocol. 2018 is going to be a smashing year!! 

The Saga continues, just not as I hoped..

Well here we are in December, and I have been off the protocol for an extended period of time because of the calcium levels contained within my blood. i understand why it has been necessary for me to take this break from the protocol. Recovering from  battle with MS is significant, but my health is important as well. So the first break brought the calcium levels down to 10.3, with 10.2 being the upper limits for high. I agreed with Michael when he suggested that I continue to remain off the protocol for an additional two weeks, which would would hopefully bring the calcium levels even lower. My lab work was scheduled for the 17th of December. Yes, that would be a little more than two weeks, but my doctor here was hesitant to write me more lab work so quickly. Well, I was impatient, and found a clinic in town that wold do the lab work for a nominal fee. The clinic here take 2 days before I can get my results, and that is only possible through my doctor. This clinic in town, had my results posted for my to view on the internet that same afternoon. So much easier, unfortunately, my calcium levels rose again. It took some investigating, but it turns out that the neetle that I was taking to help treat my kidney and bladder contains significant amount of calcium. Avoiding calcium if far more complicated than one might thing. So know, hopefully the lab work will show that my calcium score is once again acceptable. So while I am disappointed that this break from the protocol continues, there are some silver linings.

1) Have located an additional clinic  to complete my lab work, one that I can obtain the results without assistance from others.

2) If I had continued with the nettle util the 17th, who knows how high my calcium score would have been

3) While the pain has returned/increased, my balance is less, and walking has become more difficult during this break...I am taking all of this as an indication that the protocol has been effective for me.

So I need to be patent, and diligent in avoiding any additional source of calcium. I am really looking forward to resuming the protocol once again. Remaining hopefully, and I believe that is an important starting point.

Unfortunately, it's been awhile...

Well it has been awhile since my last posting here. There are several reasons for my absence. Partially because I was hoping to have positive, uplifting, encouraging material here. Unfortunately, as I have learned: when things go right with the protocol, they go very right. The opposite is equally true, when things go wrong, they go very wrong. I have actually been off the protocol for over 6 weeks now because of elevated calcium levels in my blood. As a precaution, and to get the number back down to an acceptable level, Michael has instructed me to take a break from the protocol. I am feeling better, and hope that in a couple weeks to have another blood test with results that will let me to resume following the regiment. I will be sure to do a better job of updating this blog.

Taking baby steps

Well here it is now the month of August, so a new month on the protocol. As I mentioned previously, there were some dramatic changes made to to the protocol in July that did not seem to be effective. So I went back to what had worked previously, and now incorporating some of those previously suggested changes, but one at a time.  I am still taking the Vitamin B from Brazil, but now I have included Magnisum Citrate. Previously it was evident fairly quickly that the changes were not having a positive impact. So while it may be too early to say for certain that the addition is having a positive impact, but initially it does seem to be. At the very least, it does not seem to be having any negative affects. This is only the second day of including Citrate as part of the protocol. Hopefully next week I will be able to give a more definitive response to the effectiveness. Other than that, there is not much else to report at this time. Things are just progressing along as well as could be expected. I am still feeling hopeful and optimistic about the protocol and hopefully managing my MS symptoms.

How does that saying go?

There is that expression that if it was not for bad luck, I would not have any luck at all. Admittedly that is how I am feeling lately. A little while ago tried doing some kayaking, a fairly common summer activity. As I reflect upon it now, something that happened before my MS, but stopped because of a lack of opportunity and not because MS. I figured that the difficult part would be getting into the kayak, without remembering the significance for balance.  Getting into the device was fairly straightforward, and pushed off from the dock without any problems. A few moments later I found myself upside down, submerged in the water. A few moments later, I managed to get back to the dock and out of the water. Unfortunately, I did not have a change of clothes, so stayed out there on the dock, dripping wet, as the kids continued enjoyed themselves out on the water. It should not come as any surprise that I managed to catch a cold in the middle of the summer time.

A couple of days later, I crossed paths with someone who had a case of pink eye, which I caught of course. So coughing, hacking, and squinting in one eye. What a wonderful summer. So like said previously, luck seems to be pretty negative lately.