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How I Cured Morgellons
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2/15/2019 8:35:04 AM |
Sorry for not getting back to you sooner. Your questions are so familiar to all of us with M, but especially so for those of us in education as well. Here are my responses to your questions: Question: How did you know you were getting there (getting better...recovered)? Answer: There are two main ways of measuring progress: 1. Observations of symptoms: At one time, I had a very long list of symptoms. The symptoms always come from two origins...what I felt internally, and what I felt / observed on my skin. I agree with everyone who's answered so far...any progress with this disease is every step forward is often followed with a regression. That is a crazy making scenario, but it's the way it works. What's important to do is to get a very clear documentation of your symptoms any time they occur. I didn't put dates by mine, (actually, I'd listed them for a doctor's visit questionnaire early on) but doing so gave me an awareness of what I was dealing with. I wish I'd included dates, but I didn't. If you forget past symptoms, just google symptoms of Morgellons and look at those compiled lists...you'll start remembering some you may have forgotten. You can measure progress by the absence of certain symptoms that had occurred in the past…but remember…it's impossible to measure progress in close time intervals. You can't really compare week to week since this disease cycles so much and goes back and forth. It can also get weird because some symptoms will disappear, and then new ones will surface…and some will disappear and come back differently. For example…you may have a lot of the black dots early on, then get rid of them…then they may reappear with a vengeance. That usually means you’ve eaten something you shouldn’t have. You may get them to finally go away, and then a couple of months later, they come back but not as many. Then you get busy, and you’ll finally get them to go away for good. This is true for just about every other disturbing skin or hair symptom we deal with. We’re put through the wringer physically and emotionally until we persevere long enough to be the victor. However...the way best way to track this is to check in on your list of symptoms month to month or even every 90 days or so. That's when you'll start noticing big differences. It's important to remember this so you won't get discouraged on the week to week up and down cycling of symptoms. 2. Lab work is another way to measure success. I am fortunate to have a doctor who recognizes Morgellons disease. I'd been through 18 months of visiting several doctors with no help when I found her. On my first visit, I provided her with a print out of lab work that had been done through the orders of a previous doctor the month before. She looked at it and said it looked like I had Lyme disease, but that it would have "really helped" if the previous doctors had given me the correct lab work (I love this lady). She diagnosed my Morgellons by my list of symptoms, and diagnosed the Lyme with lab work (Western Blot, etc). She also had lots of other things tested through her own list of lab work orders. I asked her if there was any specific lab test to diagnose Morgellons. She said not really...that the absence of symptoms (skin mostly) will tell the sufferer if the condition exists or is no longer present. She did say that there was a test that was very loosely associated with Morgellons. Caveat and disclaimer...I'm going on memory here of what she told me three years ago, and the brain fog was pretty thick then...so I'm not citing details by putting my hand on the Bible...this is just what I remember. The test she gave me was called a Human Transforming Growth Factor Beta 1 (TGFBl1) test. I remember her saying that it kind of measured an infection load...or that was my interpretation of what she said at that time. Please do google it and read all about it. My lab report noted that the normal range for the TGFBL1 lab test is supposed to be from 344 to 2382. In January of 2016, my result was 17,280. I was very sick. The good news is that my numbers have since gone down to the normal range. However, I still have external evidence of Morgellons...so...with this in mind, that particular lab test is just one factor (assuming my memory of what the test was supposed to measure was accurate). Another test my doctor uses is called a CD57. This one (and, again, this is my lay person interpretation) basically measures immunity level. My lab report cited the average range to be between 60 and 360…though my doctor really wants it to be at least 125 to be on the safe side. The highest I’ve been able to get mine to is a 56. The lowest mine got to was a 7. I was really sick. My last CD57 test was several months ago, and it was a 45. I was disappointed that it had bounced down some, but my doctor said not to worry about it…that’s what happens sometimes...it’ll bounce around. The last lab work I had done was in October of 2018, and they were using a new lab who forgot to measure my CD57, so I haven’t had that one tested since August of 2018. I spoke to my doctor on December 15th, and she said that based on our conversation about my symptoms, she feels my CD57 number has to have gone up since then. I hate to admit this, but the lab orders for new blood work have been sitting at Labcorp since December, and I haven’t found the time to get over there and get blood drawn. I can hear the Mel lecture from 1800 miles away…and YES…I’ll do it SOON. Question: What can we do about breath issues related to supplement aftertaste (I paraphrased here)? Answer: Water…lots of it Question: (I’m going to paraphrase your question here again) What do we do about drinking enough water when those of us in education often have infrequent breaks? Answer: HA! And I say, “HA!” because that is the million dollar question for everyone in education…sick or not. I agree with Laura though…hers is a great answer. Over the years, I’ve developed something I call, “teacher bladder” and it works pretty well for me. My co-workers often note that I’m not running to the bathroom as often as they are during the day. The reason for this is because over all my years in teaching (almost thirty in education in general and twenty in the classroom prior), I’ve “trained” myself to go at alternate times. Basically, this means I get up on and off all night long to go to the bathroom. I’m not saying this is ideal. It does interfere with my sleep somewhat…but you do what you have to do. I’m so used to it though, that I basically sleep walk to the bathroom and stay kind of asleep for the whole process. Most people are very supportive of teachers. Almost everyone I know is related to a teacher or has had teacher(s) in their social circle over the years. However, there are some who denigrate teachers…and to those I’d like to say…take a walk in our shoes and see what it’s like to have to put your basic bodily functions on hold no matter what you feel physically to make sure you perform your job to the best of your ability…do this year in and year out and then judge. However…most people agree that teachers are a wonderful group of individuals who have chosen a service profession because they care about those they serve. It IS interesting though how many teachers are afflicted by this disease…and I’m sure we could all come up with many speculations as to why…but right now we really don’t know why…we just know “is.” The only person I’ve ever met in my various circles of friends and acquaintances who has NEVER been around a teacher outside of his own educational experiences is…MEL. This has given me quite a bit of entertainment over the last couple of years and has sometimes generated some less than “entertaining” moments as well. Mel has now had me in his life on a daily basis for almost two years. He is still learning things about the world of education. For instance…how the educational calendar runs…like I’m crazy at certain times of the year, and get as excited as a child when we get holidays. He’s also learning what every teacher who will read this knows as a fact… We tend to treat those in our lives the same as we do the students. We don’t mean to…it’s just hard to turn it off…and I haven’t met a teacher yet who’s reported that her family members enjoy this type of treatment. Case in point…Mel calls me at different times of the day…which I love. I call him at different times throughout the day too. I am always busy and put my phone on speaker if I’m alone to talk to him or anyone else…this way I can multi-task. I have an office with a door (I no longer teach but am still working in education) and my office adjoins my two co-workers. We usually leave our doors open so we can talk to each other during the day, but if I’m on the phone, I close the door so as not to disturb others. Mel has a voice that “projects” and if I don’t quickly turn my volume down, he can be heard in the next office. I like the fact that I can hear Mel. It’s great when someone speaks up and I’m not straining to hear. However…because everyone was in the office today, I needed to make sure he wasn’t overheard, so I slipped and told him to please “use his inside voice.” BAD IDEA. He was not happy. Oh well…at least I didn’t tell him I’d put him in time out. I shudder to think of that reaction. But…back to your questions Jamie. I hope this has helped you. As I said on last Sunday’s prayer call…I know you have what it takes to get well. You just keep up the good work…and keep asking questions…we’re all cheering for you! Love, Karen | |||
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