February 10, 2012 § Leave a comment
A few weeks ago I made it in to my neurologist for my twice-a-year checkup. I was a little nervous about this appointment, due to the fact that I strongly believe that I was misdiagnosed… and it was the neurologist that diagnosed me with Multiple Sclerosis in March.
A few days before the appointment, I had another MRI to check on the progress of “my MS”. While I would love to tell you that I completely expected the MRI to come back normal with no lesions, I didn’t. I fully expected this to be the worst MRI to date.
As I sat down in the office, we began to go through the recent MRI results. According to the MRI report, I do, in fact, have further disease progression. Which, again, this really wasn’t that surprising.
He asked how I was doing. I told him about the “relapse” that I had and that I am now improving from that quite well. According to the neuro, I am just now coming out of a “MS exacerbation ” that started back in early May.
He asked if I was still doing the “healthy stuff” and seemed somewhat curious about it, without directly saying so. When I originally told him that I was going a natural route, he made it very clear that he disagreed with me and that I should be taking some sort of immunomodulatory therapy, which would be Rebif injections or something along the sort.
He stated that what I was doing was probably fine and good for general health, but it probably wouldn’t help me in the course of my MS. This then led me to telling him that I had a Lyme test ran… before I could tell him wether my results were positive or negative, he literally just shrugged his shoulders! I had the test results in my hands, and he had no interest whatsoever in looking at them!!! I did go ahead and tell him that I was on a number of herbs and supplements with the goal of treating Lyme. He briefly looked over the supplement list and again shrugged his shoulders.
This then led me to ask him, in his opinion, is there any possibility that I have anything other than MS? Without any hesitation, he responded “No, you have the markers for MS.” We then went over the MS makers once again.
Basically, the reason that I was diagnosed with MS was due to two major markers. I have lesions on my brain and spinal cord and antibodies were found in my CSF that was not in the blood. He then continued to tell me he wasn’t really familiar with Lyme Disease and he could refer me to an infectious disease doctor, all while insinuating that it would be a waste of my time, as he was positive of his diagnosis.
We left the office with this closing thought from the doctor… MS is a clinical diagnosis and I am the neurologist and I get to make that call. If I could run a test for it, I would. I’m the neurologist, I don’t know about all of this green stuff, this isn’t what they teach you in neurology school. I’m a neurologist, I’ll give you drugs. That’s what they taught me. I’ll give you drugs.
So, just as a quick recap… You, Mr. Neurologist, don’t know anything about a disease that can can present itself identically to MS, which is probably one of the most common diseases that you diagnose and treat in your practice. And additionally, you are refuting medical test results in order to support your diagnosis with little care to if the diagnosis is actually correct or not.
January 22, 2012 § Leave a comment
Earlier this month I had my LLMD check up and she seemed quite pleased with the progress that I have made! Exciting!!! We discussed the Cowden Protocol and the apparent effectiveness that it has had.
I brought up my concern about the MS diagnosis and this possibly being just a remission phase and not necessarily the herbs or diet. Will I have another exacerbation in short few weeks, a few months… or will all of the symptoms completely disappear and stay away?
In her opinion, I do have Lyme disease. At this point, she is unsure if the MS diagnosis is correct or not. Some leading researchers believe that Lyme Disease can trigger multiple sclerosis. However, I came across a medical journal article was recently published reporting evidence strongly suggesting that this is not the case, which is welcomed news.
So, what makes the doctor believe that the Cowden Protocol is working and is contributing to my recoveries? Herx reactions. A herxheimer reaction, or herx for short, is a worsening of symptoms as toxins die off in your body quicker than your body can get rid of them. Frequently after I take my herbs I experience a variety of symptoms, most often being a headache or nausea. In a strange way, the lousy feelings are a positive sign that the Lyme treatment is working…
January 22, 2012 § 1 Comment
Quite a bit has happened since I last posted. I guess that tends to happen when you let a month and a half go by without an update… Eeek, sorry guys. I’l just start from where I left off.
At the end of October, I had the opportunity to head to Nashville and visit Life Fitness Academy, the holistic fitness company that has been helping me out on the nutrition front during this process. While I was there, we were able to fit in a few fitness photo shoots for them, which I was super excited about.
While the photo shoots were a blast to do, it was a rude awaking at how far my health had declined. When on a shoot I usually am able to carry my own equipment with little to no help. However, on these shoots, I needed an immense amount of help to not only carry my equipment, but to walk!
I was stumbling a ton and trying my best to maintain some sort of balance. My leg was dragging regardless how much I tried to focus on picking it up. Looking through the viewfinder was disorienting and each time I looked through it I began to sway heavily. I could no longer feel the shutter button under my finger and had to look repeatedly to see if my finger was on it…
I had known that things were getting bad, but it was beginning to dawn on me how difficult simple things were getting. I think my symptoms were just as bad, if not worse than the previous exacerbation that I had in Jan-March which I was hospitalized for. I noticed that I was falling an average of two to three times a week.
Shortly after I came home from my Nashville trip, I thought I noticed that my walking had improved slightly. Not enough to be positive though. Was my diet and all of the nutrition finally starting to pay off?!? I wasn’t sure. Then other people began to notice that I was moving around better! Excited doesn’t even begin to describe the feeling of knowing that the improvements were not all in my head!
I maintained that slight improvement, which I was incredibly thankful for. Later in November, I had my LLMD appointment and was started on the Cowden Protocol, an herbal Lyme treatment.
After two weeks after being on the protocol, my walking had significantly improved! It has now been a little over two months of being on the protocol and there has been some major improvements! While they may seem insignificant, I assure they were well outside of my capabilities previously. I now can stand on one foot for an extended period of time and touch my nose, sobriety test style. Not necessarily at the same time… I haven’t tried that yet… My walking isn’t quite back to 100% normal, but it closely resembles normal when walking short distances.
While everything might not be perfect yet, it is a far cry from talking to my doctor in early November about handicap parking signs and seriously considering a wheelchair to help me get from point A to B… and that, I can be quite thankful for!!!
November 27, 2011 § 2 Comments
This past Wednesday I had the opportunity to see a Lyme literate medical doctor. Due to all of the controversy surrounding Lyme, and the assumption that Lyme doesn’t exist in Ohio, there are only three LLMD’s in the tri-state area. Luckily, the closest one is only about a hour and a half away.
Brandon and I drove down and met with the doctor. (It’s not proper edict to post the Dr’s name, due to the possibility of loosing their medical license for treating chronic Lyme disease.) She took the time to review all of my medical records and iGeneX test results. After looking at the test results and reviewing my symptoms, she’s under the impression that it is very likely that I do in fact have Lyme disease. A confirmed diagnosis will only come if the treatment is successful.
So the next step… I just started on the Cowden Protocol, an aggressive 6 month protocol with an array of herbs and a few dietary supplements. While the doctor didn’t touch on diet a whole lot, I plan on keeping a pretty strict, whole food diet with limited grains and lots of veggies. And of course, a daily smoothie!
I have a follow up appointment in a month. I’m praying for a lot of progress between now and then!
November 13, 2011 § Leave a comment
After a month of waiting , they finally came back. My Lyme test results.
So, I had my blood drawn for my Lyme test on October 3rd. From there it was shipped off to iGeneX, a Lyme speciality lab that is supposedly the best in the country for detecting the bacteria that causes Lyme Disease. All I had to do was wait 10 days and I would have the results in hand. An answer, finally.
Of course 10 days would be far to convenient… After countless harassing phone calls to the doctor’s office, being told that there was some sort of paper mix up, and 30 days later, I finally received a phone call from the doctors office. “So, Crystal, it looks as if your test results came back normal.”
The nurse at the doctors office wrapped up the conversation rather quickly as I sat on the other end of the phone too dumbfounded to think of any questions to ask. Normal?!? What exactly does normal mean?
I had convinced myself that Lyme was the answer. The answer to all of my symptoms that MS didn’t really have an explanation for. I couldn’t believe it. I felt that I was the definition for denial. If it isn’t Lyme, what made my body start attacking itself? The MSA test said I had Lyme… Should I get another test done?
I received the hard copy test results in the mail a few days after the initial news. Not incredibly motivated to sort though confusing reports that were normal, I handed them to Brandon to decipher for me. After a few moments, we began to go through them.
It soon became apparent that these tests weren’t exactly “normal” as I was previously told. The first test is an experimental test created by the lab. The CDC does not recognize this method of testing as a means of aiding in diagnosis process. However, It came back as equivocal. This means that it wasn’t positive or negative, but in the middle of the two markers. In this case the lab recommends either being retested in 4-6 weeks, or looking to the Western Blot tests for more information.
So we flipped to the Western Blot tests. There are two types of Western Blot tests, the IGm and the IGg. The IGm test usually indicates that there is an ongoing infection, where as the IGg test indicates a more current, recent infection.
The IGm wasn’t too much help, as it came back negative according to the CDC standards as well as by iGeneX’s standards. The IGg was a little more insightful as it came back negative by the CDC standards, but positive by iGeneX’s standards.
Why two different standards? Well… This is where it might get a little confusing.
Lyme disease has been recognized by medical professionals as being incredibly difficult to diagnose, and should be diagnosed primarily on symptoms and clinical evaluation. However, blood tests can aid in the process. The CDC has even taken this stance.
The Western Blot tests are considered to be one of the best tests that there is to detect Lyme disease. WB tests look for a handful of bands to be either positive or negative. It is generally agreed that some bands are more significant than others. According to the CDC, 5 bands need to be positive for the entire test to be considered positive. iGeneX has separated out the significant bands from the others. By their standards, only 2 significant bands need to be positive for the entire test to be positive.
I’m not currently looking at my results, so I may need to update this a little later, but I believe that I had two significant bands come back positive and two other bands come back as indeterminate… In-between positive and negative.
So, long story short… It looks like Lyme may be a really, really good possibility. I’m not entirely sure where to go from here… I guess I need to find a Lyme literate medical doctor, llmd, to run my results by and get their thoughts on all of this. In the mean time, I have began taking a few more herbs that should help with the healing process if it is in fact Lyme!
Disclaimer: I’m not a doctor, so please don’t quote me on any of this! This is what I have gathered from the University of Google. 🙂
October 2, 2011 § 1 Comment
Throughout my incessant research, I have read countless articles and have watched too many documentaries to count. Seriously, Netflix can kinda foster a documentary addiction. Anyhow… All of this has caused me to believe that there probably is something to all of this holistic healing, nutritious stuff.
For this reason, we have decided to try and live a healthier lifestyle and eliminate as many toxins as possible from our lives. This means that we eat mostly organic food in order to avoid pesticides, herbicides, fungicides, and preservatives. We have also switched to all natural household cleaners (which work quite well in fact), and hygiene items such as fluoride free toothpaste. Maybe I will work in exercise in there at some point… uhh, err…
In efforts to rid my body of as many toxins as possible, as previously posted here, I had my “silver” (mostly mercury) fillings removed. At the time, I was unaware of how important it is to have a dentist who specializes in amalgam filling removal. After watching a video online of how this procedure is supposed to be done, I am pretty sure that it was not. Because of this, in addition to the mercury vapors that the filling itself released on a daily bases, even more were released during the drilling and removal process. After I found this out, I was interested in having my metal levels tested to see if they were high.
I started searching for a medical professional that could provide heavy metal testing and chelation. This search process led me to a doctor of naturopathic medicine, Carol Loechinger. I went into the office for a consultation. After talking things over with Dr. Carol, she convinced me to do a Meridian Stress Assessment first. It can give me an overview of how my body is functioning (or not), including an idea of what my mercury levels are. Not knowing much about the test, I agreed. I didn’t completely hear the full explanation about the assessment and thought it was a blood test of some sort.
The test was completely took me by surprise as it was no where near a blood test. I’m sure I will get this wrong, but here it goes. The MSA analyzes the energy levels through Meridian pathways in the body. Each Meridian pathway, often acupuncture points, corresponds to a different part of the body and gives an overview of the patients health.
As usual, when I realized that this wasn’t a blood test, I was skeptical. The assessment claimed many things, however here are a few of the highlights that I can remember. My left lymphatic system has issues of some sort but the right is fine and my nervous system is not quite up to par, no surprise there. My circulation is doing alright as well as my mercury levels. I have a parasite potentially in my gallbladder and and a strep virus that my body never successfully ridded itself of from middle school.
All of this is interesting and all, but here’s the kicker… It said I have Lyme Disease. While this might not sound like a huge deal to you, it is enormous, earth shattering news to us. Lyme has been called the “great imitator” and Lyme has been known to be misdiagnosed as MS before. In fact, the symptoms can be quite similar to one another.
When Dr. Carol first mentioned Lyme, I didn’t think much of it. I’ve had a Lyme test ran, by an actual blood test, and it came back negative. And with me being skeptical and all, it kind of went in one ear and out the other. However, I mentioned in a previous post that I had a cold a few weeks ago… Well, when I was sick, only my left lymph node was swollen. Interesting… the has test gained some level of credibility. More digging will be a necessity!
October 1, 2011 § Leave a comment
I feel like I have blogged bits and pieces of everything going on without giving the entire picture. So, I’m going to back up and attempt to fill in some of the blanks. I’m sure some of this is redundant if you have been following for a little while, but I feel the need to go over this in order for it all to make sense.
In January of this year I began to experience a series of unexplained symptoms. A long three months and a string of doctor appointments later, I was diagnosed with Multiple Sclerosis. For a brief moment, I felt relief. I had an answer and my symptoms and they were no longer unexplained. However that relief was short lived before feelings of fear and uncertainty set in. Through a little bit of time and appointments with my neurologist, I began the process of accepting some of the unknowns that comes along with a MS diagnosis.
Within a few weeks of my official diagnosis, I started my standard MS treatment with Rebif injections (a disease modifying drug) and was all set to follow the typical medical path. It’s not the best prognosis, but I was told that only 25% of people are in a wheelchair and most patients live a normal lifespan. Although, what I failed to realize is how much is in between living a completely normal life and being wheelchair bound or completely paralyzed. However, I began the process of accepting the fact that I have MS and my life will no longer be the same.
However, in an odd twist, I was convinced by Life Fitness Academy to look more into natural remedies that could possibly heal my body and the lesions on my spinal cord. (More in this post.) It’s not exactly a guarantee of a cure, but the possibility sure sounds better than what the disease modifying drugs have to offer. I figured that the drugs would always be there if I decided that I wanted to go that route.
So, I immersed myself in education. About nutrition, Multiple Sclerosis, the medical industry, and about all kinds of natural, holistic routes that I could take. I was pretty shocked at some of what I learned and am still learning! I began to learn about what all is in our food, the effects that traditional medication has on our bodies and about a few of our government organizations, such as the FDA. In short, I began to see how important food is to our overall health, how detrimental toxins can be, and how our government and medical institutions fails to inform us of all of this.
I began to hope. To hope in the fact that there might be something to the notion that nutrition and a holistic route can lead to a cure. I am skeptical, as I am with most things as of late. I realize that I may come across as crazy (or, as I was once told, in denial…) but without hope, what else is left? There have been plenty ups and downs, and I am sure that there are more to come. I’m just trying to take one day at a time and try to explain some of the events that have happened recently and some of the decisions that have I have made.
I know this post is long, and there is even more to write… so, I guess this is part one. All abut the naturopathic doctor appointment next time.