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  #1  
Old Sun Jun 17, 2018, 05:01 PM
Val.B Val.B is offline
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Smile Time to tell my story

Greetings to all! I have been perusing the site since the beginning of my struggle, but haven't posted yet. I so appreciate all the information I've learned from this site and reading everyone's personal stories. It has also helped in my research about how I wanted to approach my disease and live my life in spite of it!

My story begins about 5 years ago. At that time I was struggling to adapt to a new job and had some significant energy and mood issues. I believed they might be hormonal in nature. I began seeing a naturopath because I wasn't interested in typical hormone replacement or antidepressants. (I also began seeing my acupuncturist during this time.) The start of our work began with B12 shots and testing. I was ultimately diagnosed with hypothyroidism and eventually PCOS from some hormonal testing we did. (This was prompted due to my weight being out of control despite daily workouts and counting every calorie!) Throughout this time I had some decreasing blood counts (low-normal), but most was attributed to potential nutritional deficiencies due to my horrible stomach issues. We had multiple tests performed to rule out intestinal infections and pernicious anemia. I continued having regular blood tests to monitor things, but there were no glaring issues at the time. My energy and mood had increased as I supplemented my B-12, D (I was deficient) and adjusted to my thyroid medicine. (My brilliant naturopath even suggested I could have a mild/moderate form of Aplastic Anemia, but since it was so rare she didn't think we should test for it at the time...who knew?!?)

Things remained relatively stable until the fall of 2016. At that time, all of my counts dropped low enough to be concerning. In November my platelets dropped to critical. I was scared to say the least! I called the Bozeman Cancer Center (the closest place I could go that might deal with bone marrow issues) to meet with an oncologist and see what was going on. He told me he thought it was due to my supplements. So, I stopped almost everything (he cleared a few things for me to continue.) He had a bone marrow biopsy done, but due to some cold weather (and poor handling of my sample), the sample froze. The little information they had from the other part of my sample didn't give much of a picture. (They had apparently tapped a "dry spot.") The doctor continued to insist it was my supplements and I would be fine as long as I discontinued them. About a month later (feeling terrible, I might add) I was called in to get my first blood transfusion. That scared me to death! My wonderful nurse was wise to question whether or not my condition was truly caused by supplements. Upon calling the oncologist, I only got responses from his nurse(s.) This frustrated me, so I texted my naturopath, who promptly called me and gave me the best advice ever: go to Mayo Clinic! (She knew I was going to Minnesota to see my family for Christmas anyway!)

Fate had played a hand prior to this. Less than a year before, my parents had listed their house in Wadena (middle of the state) with the thought it might take a few years to sell and their desire to move to a smaller home closer to my brother in Red Wing. They sold their house and bought a townhouse within 2 weeks. Their new home was 30 minutes away from Rochester (home of Mayo Clinic) instead of 4+ hours each way. This made it much easier to plan a visit and I believe was part of a greater plan.

Mayo Clinic was amazing! They not only got me in quickly, but they did another bone marrow biopsy to see what was really going on. My hematologist assured me this wasn't caused by supplements...or anything else they had tested for. I was signed up for a Bone Marrow Clinic (which was genetic testing to see if I actually had MDS.) Based on my bone marrow sample, the doctors felt it looked more like MDS at the time. My February visit included a visit to the transplant house and a whole lot of information about a bone marrow transplant since they felt that would be the only treatment for me long term. My brother was tested to see if he was a match, which it turned out he wasn't. (My other brother is adopted, so he wasn't tested.) This was a horrible time in my life. It happened to fall on my 44th birthday. I made a vow for next year: "Alive and Thrive at 45."

In March I learned I didn't have MDS (and there was no indication I would develop into MDS.) They believed my Aplastic Anemia was caused by an autoimmune response. At that time they put me on "watch and wait." Watch and wait was hard, but it was the best thing for me...and I am thankful for it. My counts have never fallen into the severe or very severe range. If they had, I'm not sure I would've taken the liberties with alternative treatment that I have!

Due to that extra time, I began working with my naturopath (and doing my own research) to develop something that would help my condition. Since there's almost no information about Aplastic Anemia in the alternative world, I focused on research around other autoimmune diseases. My naturopath started me on Low Dose Naltrexone due to the great success in other autoimmune diseases, such as MS. (It boosts the immune system, rather than suppressing it!) It didn't take long before I felt SOOO much better! I had more energy within a month. My energy continued to climb the longer I took it....amazing!

Along with this I continued to try modifying my diet, cutting my toxic load, and dealing with my stress and mental health. I remembered a book I had read in my 20s called The Road to Immunity. (I had always kept it in the back of my head in case I ever faced cancer. I really thought the doctor who wrote it had some good ideas that didn't invovle chemo...something I, personally, could never get on board with. I didn't have cancer, but close enough!) I ordered and reread it. It reinforced my idea that the immune system is the heart of our health. The idea of surpressing my immune system didn't make sense to me so I decided not to do cyclosporine unless things really tanked and I really didn't have a choice.

Last summer I spent a lot of time resting and researching. I went to the University of Minnesota for a second opinion. (Not interested there...she wanted to hit me hard with ATG and cyclosporine, which I was trying to avoid!) I went and saw my hematologist at Mayo Clinic. He was pushing for me to start cyclosporine alone. I pushed him off a bit, wanting to try a few more things. I also went to an AAMDS conference. It was amazing! The best part was talking to one of the presenters who is also an AA survivor. She encouraged me to continue to find my own path and not to feel pressured by the doctors. (I can never thank her enough!) At that time my naturopath had learned about a study where medicinal mushrooms could retrain the immune system. We decided to add them. (I also had gone to a doctor about my gastrointestinal issues. Through doing a low FODMAP diet I learned I can't stomach soy! My stomach issues improved greatly due to this!)

Another piece of my treatment came about due to reading another book: The Last Best Cure. (She wrote another book called the Autoimmmune Epidemic that is also very good.) In this book she outlines how childhood trauma can effect adults through disease. The study is called the Adverse Childhood Experiences Study (ACES.) Ironically, I have learned all about ACES and how to deal with children of trauma from my career as a teacher. (Sometimes things just fall into place!) The brain becomes wired to constantly respond to trauma, even when it doesn't exist. (I could go on and on about this, but I'll let you read the book!) But, I didn't think I was a child of trauma...I have wonderful parents who never abused or mistreated me. It turns out, that isn't the only trauma that can affect a young mind. My oldest brother has a developmental disability (As a former Special Ed teacher, I can say without a doubt he has autism, but that wasn't diagnosed at the time.) This stressor in our family was a constant source of chaos and uncertainty to my whole family. I realized that I had lived in a state of stress my whole life...and I thought it was normal! One of the important componants of my healing was learning to slow down and breathe. I even did a little meditation...in addition to my therapy sessions. Overall, I learned how to manage my stress. It turns out, it makes me a better teacher in addition to being happier and healthier!

My counts kept slowly dropping throughout the fall. My hematologist at Mayo kept pushing me to start cyclosporine. I almost did, but after a conversation with one of the nurses about the potential side effects (specifically being unable to teach when my neutrophils would ultimately tank), I decided to postpone starting again. God bless that nurse!!!

In December I went in to my accupuncturist. (I believe she was able to keep me well despite being around very germy students. I'm a big believer in acupuncture!) As I was leaving I said to her "I feel like I'm getting better." She said "You are. You just made it happen. Chinese medicine believes the mind leads the body." My following blood tests proved it: My counts started to climb! I thought it was a fluke: but it wasn't. (I was on the verge of needing another PRBC transfusion at the time. ) Since then, my hemoglobin has gone up to 9.4!!!! I feel better than I've felt in years! My platelets, while still critical, are the highest they've been since November 2016. (i feel like they are my stubborn blood line...maybe the last to fully recover.) My neutrophils continue to fluxuate, although I seem to be pretty healthy anyway! (I haven't had anything beyond a cold or stomach bug since this whole thing started.) I'm not completely out of the woods, but something is working. Although I think LDN might be the biggest piece of the puzzle (and maybe the medicinal mushrooms), I don't discount any of the lifestyle or mental changes I have made to create a healthy life. I also think that positive thinking (and prayer) have contributed to my healing. (I'm sure some will discount my progress to "spontaneous" in nature. I know better...I've worked for it!)

To those of you still in the throws of your own battle: keep the faith. You never know when things will turn around!
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Val, 45. Diagnosed with MAA in March 2017. Considered to be autoimmune due to a small PNH clone. Alternative treatment is working!!!
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  #2  
Old Mon Jun 18, 2018, 02:53 AM
Neil Cuadra Neil Cuadra is offline
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Val,

Thanks for telling us your story (so far).

I'm glad you've been able to combine advice from a number of professionals and your own research to find an approach that works for you. Even though every patient is different, especially with these types of diseases, your experience may give some useful ideas to other patients.
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Old Mon Jun 18, 2018, 12:48 PM
Val.B Val.B is offline
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Alternative treatment isn't for everyone...

My research initially focused only on SAA and VSAA. The statistics were very scary and I was looking mostly at immunosuppressive therapy at that time. I just couldn't get past the side effects! I wasn't willing to give up the life I love (specifically teaching) at that time. (I'm still not. I'm single and responsible for all my bills. I also can't afford not to work!) Once I started looking at MAA as a subcategory, things changed. Sadly, there is very little information on MAA. (It is a rare subcategory of a rare disease!) One of the studies I found said that without treatment 1/3 of people with MAA would get better, 1/3 would stay the same, and 1/3 would get worse. This statistic prompted me to "play around" with my treatment plan a little more than I probably would have if I were diagnosed with a more severe condition. (I figured I had a 2/3 chance of staying the same or getting better.) I also knew that supportive care has improved greatly and I could stay alive long enough to switch paths, if needed.

Before I started LDN, I came to this site looking for information. I found only a couple mentions, one that stated that it helped energy. It surely helped mine! I feel better than I've felt in years...and keep feeling better! That alone has been worthwhile to me. (The fact I think it's helping me get better makes it a miracle drug, in my mind!) A doctor at Mayo Clinic told me there wouldn't be an interaction if I had started cyclosporine. Not sure that makes sense, since they work opposite each other, but I loved the idea of staying on my "energy pill" should it ever come to that!

One of my biggest battles with my disease has been trying to find a truly integrative (western medicine + alternative medicine - equal value given to both) approach. Although Mayo Clinic has a "Complementary and Integrative" Medicine branch, it is truly more "complementary" (western medicine first, with alternative medicine to support it) than "integrative" at this time. I'd love to live in a medical world where I can have a round table of health care professionals that includes my general practitioner, hematologist, naturopath, acupuncturist, nutritional/dietary specialist, mental healthcare professional, and other holistic healers all around the table approaching my disease from different viewpoints and I get to pick what approach I want to use (or they all work together to create a personalized plan for me.) I have heard that Cancer Centers of America does something along these lines. A dream situation, in my opinion!

My journey isn't over, but I'm seeing a light at the end of the tunnel! I've accepted the fact I may never have "normal" blood counts. My hope is I can still live a relatively "normal" life despite that.
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Val, 45. Diagnosed with MAA in March 2017. Considered to be autoimmune due to a small PNH clone. Alternative treatment is working!!!
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  #4  
Old Tue Jun 19, 2018, 11:19 AM
Marlene Marlene is offline
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Location: Springfield, VA
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Congrats!!!!

Hi Val,

What a great story. I sent you two private messages so check your inbox when you get a chance.

Since you have GI issues, and are open to alternatives, you may be interested in checking out Lulu's post on fecal transplants. So much of our health is tied to our gut and getting that in order can go a long way to healing.

http://forums.marrowforums.org/showthread.php?t=5410

Wishing you continued success.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Jun 20, 2018, 01:06 AM
lisa3112 lisa3112 is offline
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The hospital I work at does fecal transplants! Not sure how they actually do it. This is in Melbourne Australia. A new and exciting area of medicine! Gut equals health.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Wed Jun 20, 2018, 10:18 AM
Marlene Marlene is offline
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They'll do them in the US but I think it's still limited to the treatment of c-diff.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Jun 20, 2018, 06:02 PM
Rarity Rarity is offline
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This is interesting. I was made aware of and discussing this very topic for fecal transplant a couple of months ago. A friends aunt just had a fecal transplant last year for C-diff and is doing great! I believe she said a donor is used in this instance too. What they can do in the medical world for people is truly amazing.
All the best Val!
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