Essentially I am facing two problems currently.
1) My esophagus has stopped working correctly and has no wave function in its lower 2/3, making it impossible for me to swallow solid food. I would like very much to resolve this, so that I can eat dinner with my family.
2) Something has happened that has caused my esophagus to stop working. We need to figure out what it is, and make it better.
Today, I took a fantastic first step toward figuring out step 1. Hurray!
Over the weekend I have found two very exciting articles about the use of electro-stimulation to improve esophageal dysmotility. Here are the abstracts:
Kansas Research Hospital and Medical Center, Kansas City, MO.
Background: The treatment of progressive oropharyngeal dysphagias of neurological origin as well as esophageal motility disorders is extremely difficult and may involve artificial means of maintaining nutrition and hydration, such as the use of percutaneous gastrostomy and other surgeries. Acupuncture has been found to be beneficial in poststroke oropharyngeal dysphagia.
Objective: To describe acupuncture treatment of a patient with progressive oropharyngeal dysphagia and esophageal motility disorder of undetermined etiology.
Design, Setting, and Patient: Case report of a 68-year-old woman at a solo private practice in Kansas City, Missouri, treated beginning in 2004 and followed up through early 2007.
Intervention: Acupuncture treatment including electroacupuncture for 11 sessions. Points used were SP 6 and SP 9 (connected with 2.5-Hz stimulation), LU 7, LI 4, and ST 36, bilaterally. From the second treatment onward, CV 22 was added. Each treatment lasted 25 minutes.
Main Outcome Measure: Symptom response following acupuncture.
Results: The patient reported complete resolution of symptoms after 11 sessions, and she has remained symptom-free for 2 years without needing further acupuncture treatment or any other therapy.
Conclusion: Acupuncture should be considered as one of the therapeutic tools for treating oropharyngeal dysphagia and esophageal motility disorder.
and then,
Transcutaneous electrical nerve stimulation (TENS) improves upper GI symptoms and balances the sympathovagal activity in scleroderma patients.
Sallam H, McNearney TA, Doshi D, Chen JD.
Division of Gastroenterology, Department of Internal Medicine, University of Texas Medical Branch, Galveston, Texas 77555, USA.
Abstract
To assess the impact of transcutaneous electrical nerve stimulation (TENS) at gastrointestinal (GI) acupoints on GI symptoms and quality of life in scleroderma patients, 17 patients filled out SF-36 and GI symptom questionnaires before the electrocardiogram was recorded for two intervals: baseline and TENS. At home, patients applied TENS for 14 days, then were reassessed. Acutely, TENS application significantly increased sympathetic and vagal activities vs. baseline (P=0.02 and P=0.004), respectively. Prolonged TENS application normalized the sympathovagal balance (P=0.04), decreased GI symptom scores (P=0.02) and increased the physical functioning score (SF36), which strongly correlated with the change in the sympathovagal balance (r=0.6, P=0.02). In conclusion, TENS at GI acupoints offers a potential option in the treatment of upper GI symptoms, but further study is necessary.
...
With these two studies in hand, I visited the wonderful acupuncturist who has been treating me for the past eight months. Not only was he impressed with my research but he was very willing to give me the identical treatment that worked on the woman in the original study. So, we did it!
When he inserted the two thin needles in my abdomen (near my esophagus), my entire stomach jumped! It had such a quick and strong reaction. After he started the low electric stimulation in the needles in my calves, my stomach started to make all sorts of noises. It was bubbling and gurgling merrily away, things were really moving down there. I could not stop smiling the entire time. I kept thinking to myself, "This worked for that woman after only 11 treatments and I am already having my first treatment! I am on my way!"
I have no idea if there was any effect at all upon my own esophageal motility but I can definitively state that my entire body responded to the acupuncture and electro-stim today, and my stomach was digesting very well. When my gut jumped as he inserted the needles, my acupuncturist gave me a huge smile and said, "That is a very positive sign. Something was sluggish down there and it just turned back on."
Is it possible to do a happy dance online? I am so happy. It was such a wonderful day. I am feeling 200% better than I did just two weeks ago, my skin is looking so much healthier and my brain fog has lifted. I even managed to take 6 neprinol today and I feel that the supplements have been helping me so much. My whole aura is positive right now. I just know I am on the right path.
So, tomorrow morning we leave... and I hope that after Wednesday, I can write definitively that there is no cancer in my esophagus - that we are on the right track with the healing steps being taken, and that there will be plenty of time for my healing journey.
Sending much love and healing to you.
Sunday, July 18, 2010
Preparing for A Journey
Tomorrow my husband and I will leave our three small children behind with their grandmother and a trusted babysitter, and head north to see an esophageal specialist. In the course of a week I will have three procedures - an esophogram (probably to confirm results of the last one), a TNE and a manometry. The results will be important, not only for my swallowing function but also in terms of at last getting us to a diagnosis. Or at least a lot closer to one.
While we are at the medical center, we will visit in person with a wonderful woman from the Road Back Foundation who called me at home during the very lowest moment I have had since this all started. She called to give me hope, tell me a story of healing, and let me know that I will make it through this. She also gave me the contact information for the doctor who may well save my life with the AP treatment.
I am still in wonder that this situation which is unexpected and a bit grim has already brought so many blessings into my life in the form of amazing advice and support from those who have previously traveled the path I am on. Three weeks ago I had no idea any of this was happening, and now I will meet in person a woman who may have preserved my health and our family in one telephone call. I can't wait to give her a hug.
There is another avenue we will have to look into, if the rheumatological path turns out to be a false lead. My naturopath advised me yesterday that I should also check into parasympathetic nerve disorders, as the autonomic nervous system controls smooth muscle response and the part of my esophagus that has stopped working is smooth muscle. He thinks it could possibly be related to that awful flu shot I had last October... the tingling, twitching, nausea and headaches I have experienced since that time. I guess it could be a postviral (post-vaccine) response. I have no idea how one could navigate successfully through that... but none of the supplements I am taking right now will hurt me in any way, so hopefully they are helping.
I wish I understood why I wake every morning so scared, even though I go to sleep peacefully at night and sleep well. I read last night about Sheldrake's morphic fields and the theory that our brains are like radios positioned to interpret the fields transmitting energy all around us. If my brain/radio has stopped functioning well, surely it must be possible to re-energize it so that it can take in the information about how to send the right signals to my esophagus again.
Maybe that ties into the success they have had with electro-stimulation (both through acupuncture and TENs therapy) to get the lower esophagus motility functioning again - or greatly improved. Maybe the electro-stim helps get the brain/radio back tuned into the right frequency.
I have so much hope and so much confidence that things are going to be okay. Whatever that means. I don't know what I believe about reincarnation, but I am working on finding peace in needing to let go of whatever I ultimately need to let go of -- eating solid food, other physical functions, even being physically present in my body to be near my family. I believe that love lasts beyond death so I am not worried about needing to let go of the profound love I feel for my family. That part will remain no matter what :-)
I guess the journey will get both harder and easier this week. Harder due to the separation from my children, and because we are going to get some concrete information about what is not working in my body. Easier because once we know what we are dealing with, we will be closer to starting a proactive plan for treatment. My lyme results should come back from IgeneX this week as well.
The important thing is, I am alive today and actually feeling pretty darn good. Ready to blend my breakfast. Grateful and appreciative for this moment, and for all of the love and support that surround me.
May this day bring healing to you as well. May all of our journeys be long and graceful.
While we are at the medical center, we will visit in person with a wonderful woman from the Road Back Foundation who called me at home during the very lowest moment I have had since this all started. She called to give me hope, tell me a story of healing, and let me know that I will make it through this. She also gave me the contact information for the doctor who may well save my life with the AP treatment.
I am still in wonder that this situation which is unexpected and a bit grim has already brought so many blessings into my life in the form of amazing advice and support from those who have previously traveled the path I am on. Three weeks ago I had no idea any of this was happening, and now I will meet in person a woman who may have preserved my health and our family in one telephone call. I can't wait to give her a hug.
There is another avenue we will have to look into, if the rheumatological path turns out to be a false lead. My naturopath advised me yesterday that I should also check into parasympathetic nerve disorders, as the autonomic nervous system controls smooth muscle response and the part of my esophagus that has stopped working is smooth muscle. He thinks it could possibly be related to that awful flu shot I had last October... the tingling, twitching, nausea and headaches I have experienced since that time. I guess it could be a postviral (post-vaccine) response. I have no idea how one could navigate successfully through that... but none of the supplements I am taking right now will hurt me in any way, so hopefully they are helping.
I wish I understood why I wake every morning so scared, even though I go to sleep peacefully at night and sleep well. I read last night about Sheldrake's morphic fields and the theory that our brains are like radios positioned to interpret the fields transmitting energy all around us. If my brain/radio has stopped functioning well, surely it must be possible to re-energize it so that it can take in the information about how to send the right signals to my esophagus again.
Maybe that ties into the success they have had with electro-stimulation (both through acupuncture and TENs therapy) to get the lower esophagus motility functioning again - or greatly improved. Maybe the electro-stim helps get the brain/radio back tuned into the right frequency.
I have so much hope and so much confidence that things are going to be okay. Whatever that means. I don't know what I believe about reincarnation, but I am working on finding peace in needing to let go of whatever I ultimately need to let go of -- eating solid food, other physical functions, even being physically present in my body to be near my family. I believe that love lasts beyond death so I am not worried about needing to let go of the profound love I feel for my family. That part will remain no matter what :-)
I guess the journey will get both harder and easier this week. Harder due to the separation from my children, and because we are going to get some concrete information about what is not working in my body. Easier because once we know what we are dealing with, we will be closer to starting a proactive plan for treatment. My lyme results should come back from IgeneX this week as well.
The important thing is, I am alive today and actually feeling pretty darn good. Ready to blend my breakfast. Grateful and appreciative for this moment, and for all of the love and support that surround me.
May this day bring healing to you as well. May all of our journeys be long and graceful.
Friday, July 16, 2010
Dark nights of the soul...
I wonder if most people who suffer from chronic autoimmune diseases find that the time leading up to diagnosis is the most difficult to bear. The search for answers can be long and winding, difficult to navigate even for those with faith.
Today I picked up the paper copy of my radiology results, the same exam which first alerted me to the possibility that I might be suffering with a rheumatic disease.
The paper says -
"Deglutition was normal for all substances and there was no obstruction in the neck and normal peristalsis in the upper esophagus. The lower two-thirds of the esophagus showed almost no peristaltic activity and the esophagus did not empty even in the upright position. There was marked stasis and the patient felt symptomatic. There was no esophageal stricture or evidence for achalasia. The esophagus was not dilated.
Impression: 1. Normal swallowing exam. 2. Primary motility disorder consistent with collagen vascular disease in this patient who has other autoimmune involvement. Consider esophageal manometry for baseline study."
Sigh.
So there you have it. I should be glad it isn't cancer, and I am. I truly am! That is a huge blessing by itself.
That said, I sure wish I could swallow solid food. It is starting to settle in that this may well be permanent.
There has been some good news today though. First, I met with a pulmonologist who said my lungs are currently at 100%, based on a breath test and blood oxygen saturation levels. So for now, no interstitial lung disease.
Got my rheumatoid factor test back. It was also normal, much like the ANA and Scl-anti-70 tests.
Nothing is really adding up just yet. I am sure we'll know a whole lot more after we meet with the esophageal specialist next week. They're going to run a bunch of esophagus specific tests and that should either confirm or refute the radiology report.
The good news is that I'll soon find out about Lyme involvement (if there is any) and if I do have a connective tissue disease, I'm meeting with one of the best AP rheumatologists in the world in two weeks who can get me started with treatment. I have every reason to be extremely hopeful.
That said, today I have been tired and very sad. Maybe it's just part of the process. I'm in my own dark night of the soul, trying so hard to move forward.
My five year old son wrote me a note today with his own unique spelling. So beautiful it made me cry. He wrote "Nies Mome, Frrr Mamme, Wel Mome, Lov (His name, His brother's name)". Translation: Nice mommy, for mommy, well mommy, Love - (my sons)". I pray to God and all things holy that I will be there for him and my other children all through their growing years, to teach them and guide them into adulthood. That is really all I care about. Solid food means nothing compared with that.
Whomever you are, reading this post - I hope this finds you well and healing. If you are having a hard day, I hope that you will feel less alone. We are all connected, and I believe that when even one person heals we all heal to some degree.
Much love to you.
Today I picked up the paper copy of my radiology results, the same exam which first alerted me to the possibility that I might be suffering with a rheumatic disease.
The paper says -
"Deglutition was normal for all substances and there was no obstruction in the neck and normal peristalsis in the upper esophagus. The lower two-thirds of the esophagus showed almost no peristaltic activity and the esophagus did not empty even in the upright position. There was marked stasis and the patient felt symptomatic. There was no esophageal stricture or evidence for achalasia. The esophagus was not dilated.
Impression: 1. Normal swallowing exam. 2. Primary motility disorder consistent with collagen vascular disease in this patient who has other autoimmune involvement. Consider esophageal manometry for baseline study."
Sigh.
So there you have it. I should be glad it isn't cancer, and I am. I truly am! That is a huge blessing by itself.
That said, I sure wish I could swallow solid food. It is starting to settle in that this may well be permanent.
There has been some good news today though. First, I met with a pulmonologist who said my lungs are currently at 100%, based on a breath test and blood oxygen saturation levels. So for now, no interstitial lung disease.
Got my rheumatoid factor test back. It was also normal, much like the ANA and Scl-anti-70 tests.
Nothing is really adding up just yet. I am sure we'll know a whole lot more after we meet with the esophageal specialist next week. They're going to run a bunch of esophagus specific tests and that should either confirm or refute the radiology report.
The good news is that I'll soon find out about Lyme involvement (if there is any) and if I do have a connective tissue disease, I'm meeting with one of the best AP rheumatologists in the world in two weeks who can get me started with treatment. I have every reason to be extremely hopeful.
That said, today I have been tired and very sad. Maybe it's just part of the process. I'm in my own dark night of the soul, trying so hard to move forward.
My five year old son wrote me a note today with his own unique spelling. So beautiful it made me cry. He wrote "Nies Mome, Frrr Mamme, Wel Mome, Lov (His name, His brother's name)". Translation: Nice mommy, for mommy, well mommy, Love - (my sons)". I pray to God and all things holy that I will be there for him and my other children all through their growing years, to teach them and guide them into adulthood. That is really all I care about. Solid food means nothing compared with that.
Whomever you are, reading this post - I hope this finds you well and healing. If you are having a hard day, I hope that you will feel less alone. We are all connected, and I believe that when even one person heals we all heal to some degree.
Much love to you.
Monday, July 12, 2010
Band of Angels
My faith has grown throughout the past few years, especially since having children. Never before though have I felt that I was consistently witness to miracles happening all around me every day.
In less than two weeks, I have met a score of women from around the country and the world who have taken me from a place of desolation and despair to confidence, hope and even joy. These women that I have met through the Road Back Foundation are either patients, mothers, or spouses of people who suffer from scleroderma and rheumatoid arthritis. They have each found their way to the Road Back Foundation and many of them (or their loved ones) have achieved partial or complete remission from their illness.
The main thing about getting your body back into a steady state from rheumatic disease is that it is not a quick fix. It is a slow burning, life long process of approaching and hopefully achieving remission that must be maintained forever.
Perhaps due to the lengthy and unpredictable nature of the process, these amazing people are fully invested - not only in their own situations but also in being there as a true emotional support for each other. Never have I seen such selfless kindness shown by so many in such a short time. I have never had such a powerful and immediate response of love from total strangers who are moved to act on my behalf. I am overwhelmed.
I received a letter late last night from a woman who recovered from scleroderma over the course of five long, difficult, committed years. She had been given only months to live when she found the AP, and was deep into the process of an excruciating death from multiple organ involvement. Through the AP she found a path to healing and she bravely took it. Her patience and commitment to the process, despite setbacks along the way, is awe inspiring.
Even more amazing, she offered to be there for me throughout anything I may face in my own journey in the coming weeks and months, with the understanding that I will pay it forward.
I read her message with tears in my eyes and felt as though I have been placed directly into the core of a comet or a lightening bolt. I have suddenly become part of something vital, life-changing, life-saving. I can't wait to begin to heal so that I too can give this kind of unconditional support and caring to another person just like me, someone scared and overwhelmed that needs a little gentle guidance toward achieving health and remission. I can't wait to pay this forward.
I believe that sometimes we are placed in situations that are difficult to understand (at least at the time) to help us grow in ways we could not possibly have imagined. Two weeks ago I would never have imagined that I might have a serious rheumatic disease, and I certainly would not have fathomed that close at hand were a band of angels waiting to watch over and guide me through the process of finding all that I will need to heal.
My biggest wish right now, other than the yearning that underpins everything (please let me stay alive to nurture and guide my children into adulthood) is that I will be a (living) angel for others too... that I will be able to powerfully give to others this same gift of hope and help. Where there is hope, there is everything.
May this blog bring hope to you. Much love.
In less than two weeks, I have met a score of women from around the country and the world who have taken me from a place of desolation and despair to confidence, hope and even joy. These women that I have met through the Road Back Foundation are either patients, mothers, or spouses of people who suffer from scleroderma and rheumatoid arthritis. They have each found their way to the Road Back Foundation and many of them (or their loved ones) have achieved partial or complete remission from their illness.
The main thing about getting your body back into a steady state from rheumatic disease is that it is not a quick fix. It is a slow burning, life long process of approaching and hopefully achieving remission that must be maintained forever.
Perhaps due to the lengthy and unpredictable nature of the process, these amazing people are fully invested - not only in their own situations but also in being there as a true emotional support for each other. Never have I seen such selfless kindness shown by so many in such a short time. I have never had such a powerful and immediate response of love from total strangers who are moved to act on my behalf. I am overwhelmed.
I received a letter late last night from a woman who recovered from scleroderma over the course of five long, difficult, committed years. She had been given only months to live when she found the AP, and was deep into the process of an excruciating death from multiple organ involvement. Through the AP she found a path to healing and she bravely took it. Her patience and commitment to the process, despite setbacks along the way, is awe inspiring.
Even more amazing, she offered to be there for me throughout anything I may face in my own journey in the coming weeks and months, with the understanding that I will pay it forward.
I read her message with tears in my eyes and felt as though I have been placed directly into the core of a comet or a lightening bolt. I have suddenly become part of something vital, life-changing, life-saving. I can't wait to begin to heal so that I too can give this kind of unconditional support and caring to another person just like me, someone scared and overwhelmed that needs a little gentle guidance toward achieving health and remission. I can't wait to pay this forward.
I believe that sometimes we are placed in situations that are difficult to understand (at least at the time) to help us grow in ways we could not possibly have imagined. Two weeks ago I would never have imagined that I might have a serious rheumatic disease, and I certainly would not have fathomed that close at hand were a band of angels waiting to watch over and guide me through the process of finding all that I will need to heal.
My biggest wish right now, other than the yearning that underpins everything (please let me stay alive to nurture and guide my children into adulthood) is that I will be a (living) angel for others too... that I will be able to powerfully give to others this same gift of hope and help. Where there is hope, there is everything.
May this blog bring hope to you. Much love.
Saturday, July 10, 2010
Connections
One of the most exciting things about this past week for me has been the incredible amount of information I've discovered and been directed toward by my band of angels at the Road Back Foundation. I am reading and learning as quickly as I can. There are more connections than I ever imagined possible between the mycoplasma bacteria and difficulties I have had with my reproductive health for well over a decade.
In fact, so many pieces are falling into place - it is very relieving. All of the "mysteries" I have gone through are now lining up, making sense.
Mycoplasma is related to:
...and there are bound to be many more connections!
I am positive IgG for mycoplasma pneumonaie, which indicates a more distant infection. I will wait to speak with my rheumatologist about the significance of this, but sounds like it isn't likely to be related to either the flu shot I received last October or how sick I got one month later with the actual flu. (Yes, the dreaded H1N1.)
I am also fascinated by the concept that bacteria may be able to be passed to the fetus in utero and the belief by some doctors that this will ultimately be discovered to be the cause of what we currently believe to be "inherited autoimmunity".
Dr. Attila Toth writes, "Along with this shift in perspective will come the realization that some diseases now thought to be genetic in origin are, in fact, carried down through a generational line by pathogens that the fetus picks up in the uterus. Strictly as a matter of conjecture, I think it’s possible that the list might include such currently baffling illnesses as Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease (amyotrophic lateral sclerosis), autism, multiple sclerosis, and schizophrenia. A number of congenital abnormalities may also be connected to intrauterine infections, most notably heart defects, spina bifida, omphalocele, and a number of chromosomal defects including Down’s syndrome."*
Dr. Toth prescribes a mix of low dose antibiotics for extended times to treat infections that hamper fertility, very similar to the antibiotic protocol that I hope to go on shortly for my own rheumatic situation.
All this is so exciting! I can't wait to tell my older brothers that they need not succumb to the fate of our father and grandparents - Alzheimer's may be bacterial, and could possibly be treated with antibiotics. This is definitely worth a lot more research and I feel so incredibly blessed to have started down this path with the AP.
Miracles come in the strangest of packages. Perhaps at the end of this, I will have the joy of giving a lease on life to all of the friends and family I love who may ultimately need the help of an antibiotic protocol to overcome their own health challenges. I can honestly say that for this one moment, far from being upset or depressed, I feel so blessed. Maybe I will be a messenger of healing :-) What an amazing destiny!
Much love and healing to you.
*This quote shared via the kindness of a posting today by another member of the Road Back Foundation
In fact, so many pieces are falling into place - it is very relieving. All of the "mysteries" I have gone through are now lining up, making sense.
Mycoplasma is related to:
- Endometriosis - Experienced severely from 1999 through 2004
- Infections in utero - My DS1 and I were both placed on IV antibiotics for 4 days following his birth due to me spiking a fever during the grueling 60 hour labor
- High risk pregnancies resulting in early c-section - My DD born last year brought me the most challenging pregnancy imaginable, complete with Down Syndrome risk, suspected parvovirus infection, echogenic bowel and wrapping herself 4x in nuchal cord. She wanted to get out of there!
- All 3 of my children have the same strange birthmark on their spines, which I now believe to be tied to a bacterial cause
- Pneumonia - Which I have experienced 3x in my early life, severely
...and there are bound to be many more connections!
I am positive IgG for mycoplasma pneumonaie, which indicates a more distant infection. I will wait to speak with my rheumatologist about the significance of this, but sounds like it isn't likely to be related to either the flu shot I received last October or how sick I got one month later with the actual flu. (Yes, the dreaded H1N1.)
I am also fascinated by the concept that bacteria may be able to be passed to the fetus in utero and the belief by some doctors that this will ultimately be discovered to be the cause of what we currently believe to be "inherited autoimmunity".
Dr. Attila Toth writes, "Along with this shift in perspective will come the realization that some diseases now thought to be genetic in origin are, in fact, carried down through a generational line by pathogens that the fetus picks up in the uterus. Strictly as a matter of conjecture, I think it’s possible that the list might include such currently baffling illnesses as Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease (amyotrophic lateral sclerosis), autism, multiple sclerosis, and schizophrenia. A number of congenital abnormalities may also be connected to intrauterine infections, most notably heart defects, spina bifida, omphalocele, and a number of chromosomal defects including Down’s syndrome."*
Dr. Toth prescribes a mix of low dose antibiotics for extended times to treat infections that hamper fertility, very similar to the antibiotic protocol that I hope to go on shortly for my own rheumatic situation.
All this is so exciting! I can't wait to tell my older brothers that they need not succumb to the fate of our father and grandparents - Alzheimer's may be bacterial, and could possibly be treated with antibiotics. This is definitely worth a lot more research and I feel so incredibly blessed to have started down this path with the AP.
Miracles come in the strangest of packages. Perhaps at the end of this, I will have the joy of giving a lease on life to all of the friends and family I love who may ultimately need the help of an antibiotic protocol to overcome their own health challenges. I can honestly say that for this one moment, far from being upset or depressed, I feel so blessed. Maybe I will be a messenger of healing :-) What an amazing destiny!
Much love and healing to you.
*This quote shared via the kindness of a posting today by another member of the Road Back Foundation
Friday, July 9, 2010
Waiting for the Diagnosis...
The Roadback Foundation Bulletin Board has been an incredible gift to me within the last week. Only one week ago I was told that I might have scleroderma, after my modified barium swallow and cine-esophogram showed esophageal dysmotility with an apparent absence of correct wave function.
Then, only a few days later, I found the rash on my back that could be my first skin involvement. It seems like things are moving very quickly... but I've had signs for a few years now that my body wasn't at 100%. The blessing is that with early treatment I feel there is such a strong chance that I can live a long and productive and healthy life.
In only one week, thanks to the amazing volunteers and members of RoadBack, I have located both an experienced AP (Antibiotic Protocol) doctor and a Lyme Doctor. I have been given a visceral sense of hope that I really can heal from even this. I've ordered my Lyme test kit and I'll get the results of my ANA and Scleroderma antibody tests next week. It's ridiculous that I am so nervous about those results, when clearly they are just a number and have no effect whatsoever upon my actual physical wellness.
Today, the three books I ordered from Amazon arrived. They are "The New Arthritis Breakthrough" by Henry Scammell, "Scleroderma: The Proven Therapy" by Henry Scammell and "Scleroderma: The First Year" by Karen Gottesman. I've just put the kids down to nap and plan to spend the afternoon reading through them.
In the long term, especially once I've started treatment, I really don't want my life to revolve around scleroderma or MCTD. I hope that one year from now, these things will just be one small facet of who I am... even if I still have to blend my food for the rest of my life. There is so much wonder and beauty in the world, I can't wait to get through this so I can get back out there and experience it with my family.
Much love.
Then, only a few days later, I found the rash on my back that could be my first skin involvement. It seems like things are moving very quickly... but I've had signs for a few years now that my body wasn't at 100%. The blessing is that with early treatment I feel there is such a strong chance that I can live a long and productive and healthy life.
In only one week, thanks to the amazing volunteers and members of RoadBack, I have located both an experienced AP (Antibiotic Protocol) doctor and a Lyme Doctor. I have been given a visceral sense of hope that I really can heal from even this. I've ordered my Lyme test kit and I'll get the results of my ANA and Scleroderma antibody tests next week. It's ridiculous that I am so nervous about those results, when clearly they are just a number and have no effect whatsoever upon my actual physical wellness.
Today, the three books I ordered from Amazon arrived. They are "The New Arthritis Breakthrough" by Henry Scammell, "Scleroderma: The Proven Therapy" by Henry Scammell and "Scleroderma: The First Year" by Karen Gottesman. I've just put the kids down to nap and plan to spend the afternoon reading through them.
In the long term, especially once I've started treatment, I really don't want my life to revolve around scleroderma or MCTD. I hope that one year from now, these things will just be one small facet of who I am... even if I still have to blend my food for the rest of my life. There is so much wonder and beauty in the world, I can't wait to get through this so I can get back out there and experience it with my family.
Much love.
Wednesday, July 7, 2010
It takes a village to heal a girl...
So many people have come to my assistance in such a short time, it fills my heart. From the RoadBack Foundation bulletin board I have received letters and messages from at least six women who have been in my exact situation and recovered at least partially, and all of them are so encouraging.
My naturopath has risen to the fore and he was the first person to think to check my mycoplasma levels.
The wonderful woman at Scripps connected me to her equally caring esophageal doctor specialist in Davis, CA... both of them have done everything in their power to get me the best treatment as quickly as possible.
My family has called and written from all over the world to offer support.
My husband has been trying hard to get his head around what is happening and he made me a very thoughtful blended dinner last night, and spent a long time researching rheumatic disease.
My younger son tells me about every five minutes, "Mommy, I love you."
And I have begun a new regimen of Vitamin D3, fish oils, Moducare, aloe vera juice and hopefully a lot less stress. Going to get tested for Lyme Disease exposure, and really looking forward to finally getting on the antibiotic protocol once I have been properly assessed - hopefully no later than September.
I am trying to breathe. I don't understand why I wake full of fear each morning, even though I go to sleep so peacefully. I think it must be a biochemical response to what is happening in my body.
Need to get off the computer now and give my kids 100% attention - going to make the best of every second we have together.
Thank you for reading and much love.
My naturopath has risen to the fore and he was the first person to think to check my mycoplasma levels.
The wonderful woman at Scripps connected me to her equally caring esophageal doctor specialist in Davis, CA... both of them have done everything in their power to get me the best treatment as quickly as possible.
My family has called and written from all over the world to offer support.
My husband has been trying hard to get his head around what is happening and he made me a very thoughtful blended dinner last night, and spent a long time researching rheumatic disease.
My younger son tells me about every five minutes, "Mommy, I love you."
And I have begun a new regimen of Vitamin D3, fish oils, Moducare, aloe vera juice and hopefully a lot less stress. Going to get tested for Lyme Disease exposure, and really looking forward to finally getting on the antibiotic protocol once I have been properly assessed - hopefully no later than September.
I am trying to breathe. I don't understand why I wake full of fear each morning, even though I go to sleep so peacefully. I think it must be a biochemical response to what is happening in my body.
Need to get off the computer now and give my kids 100% attention - going to make the best of every second we have together.
Thank you for reading and much love.
Tuesday, July 6, 2010
Mycoplasma Confirmed
First of all, I am the luckiest woman in the world. I have now had my worst fears come true and I realize that I have the strength to withstand all of them. Today I received bloodwork back showing positive IgM for Mycoplasma Bacteria, plus I found a patch of scaly skin on my back that has just thickened and gone a little numb. With this plus the Raynaud's and Esophageal involvement... it's pretty clear that this is not only rheumatic, it's likely Scleroderma. Should get the antibody tests for that done next week... bloodwork on the way.
I wept a little bit, but then I walked to the beach and dug my hand deep into the sand at the edge of the water. Some day I will be part of that sand, but today is not that day. I looked out at the horizon toward the land where I grew up and I swore that I will never be scared of anything again in my life. Ever. No matter what.
So, it's time to move forward.
I am excited about this blog because it is going to be my vehicle for publicizing to the world the amazing research that has been done relating autoimmune conditions such as the one I am facing (scleroderma) to infection with the mycoplasma bacteria. I don't know why more doctors aren't ardently promoting antibiotics as a method of putting autoimmune diseases into remission, because the evidence is out there (all the way back to the 1940s) and it is very clear.
In this recent study done by the University of Massachusetts Medical School in 2004, it was clearly demonstrated that when infecting mice with the mycoplasma bacteria the scientists were able to create a scleroderma-like condition which can be remediated with antibiotics. As it says in the article, "We previously showed that the major targets of autoantibodies in scleroderma are centrosomes, organelles involved in mitotic spindle organization. Here we show that centrosome autoantibodies are induced in mice by mycoplasma infection... Antibiotic treatment of mice prevents autoantibody development."
I feel so blessed with this information, and saddened for the millions of families who have lost a member to autoimmune illness and were never told once that the use of low dose antibiotics might just have saved them. The rheumatologist that I am going to see in Riverside states directly on his website that he has successfully treated 70% of the patients who have come to him with scleroderma, using the antibiotic protocol.
I will be writing more about the antibiotic protocol soon. I have ordered a few seminal works about this subject off of Amazon.Com and will write an entire post about the books once I have read them.
For now I am sending much love to anyone reading this post - whether a friend, family member or someone like me who is dealing with scleroderma and looking for information. You may be feeling scared, but I have hope for you. There is a real treatment for this thing and I am going to take you along my journey to find it.
I received such an uplifting email from a woman who has had scleroderma for 6 years and is in complete remission. She told me about the vacation she is leaving for today with her husband and sons, and how strong and vital she feels. "You would never know that I have scleroderma unless you closely examined the capillaries of my nail beds" she announced. She says she personally knows 30 other people all on the antibiotic protocol that are ALL improving and many going into complete remission.
This stuff ain't rocket science! It also isn't new-agey or alternative. It's just good medicine, and I think that with the research currently underway, soon autoimmunity is going to be something we deal with just like a UTI.
Much love to you all, wherever you are.
I wept a little bit, but then I walked to the beach and dug my hand deep into the sand at the edge of the water. Some day I will be part of that sand, but today is not that day. I looked out at the horizon toward the land where I grew up and I swore that I will never be scared of anything again in my life. Ever. No matter what.
So, it's time to move forward.
I am excited about this blog because it is going to be my vehicle for publicizing to the world the amazing research that has been done relating autoimmune conditions such as the one I am facing (scleroderma) to infection with the mycoplasma bacteria. I don't know why more doctors aren't ardently promoting antibiotics as a method of putting autoimmune diseases into remission, because the evidence is out there (all the way back to the 1940s) and it is very clear.
In this recent study done by the University of Massachusetts Medical School in 2004, it was clearly demonstrated that when infecting mice with the mycoplasma bacteria the scientists were able to create a scleroderma-like condition which can be remediated with antibiotics. As it says in the article, "We previously showed that the major targets of autoantibodies in scleroderma are centrosomes, organelles involved in mitotic spindle organization. Here we show that centrosome autoantibodies are induced in mice by mycoplasma infection... Antibiotic treatment of mice prevents autoantibody development."
I feel so blessed with this information, and saddened for the millions of families who have lost a member to autoimmune illness and were never told once that the use of low dose antibiotics might just have saved them. The rheumatologist that I am going to see in Riverside states directly on his website that he has successfully treated 70% of the patients who have come to him with scleroderma, using the antibiotic protocol.
I will be writing more about the antibiotic protocol soon. I have ordered a few seminal works about this subject off of Amazon.Com and will write an entire post about the books once I have read them.
For now I am sending much love to anyone reading this post - whether a friend, family member or someone like me who is dealing with scleroderma and looking for information. You may be feeling scared, but I have hope for you. There is a real treatment for this thing and I am going to take you along my journey to find it.
I received such an uplifting email from a woman who has had scleroderma for 6 years and is in complete remission. She told me about the vacation she is leaving for today with her husband and sons, and how strong and vital she feels. "You would never know that I have scleroderma unless you closely examined the capillaries of my nail beds" she announced. She says she personally knows 30 other people all on the antibiotic protocol that are ALL improving and many going into complete remission.
This stuff ain't rocket science! It also isn't new-agey or alternative. It's just good medicine, and I think that with the research currently underway, soon autoimmunity is going to be something we deal with just like a UTI.
Much love to you all, wherever you are.
Monday, July 5, 2010
Crisis = Opportunity
The Beginning
My name is Andrea and I have started this blog for several reasons. For about nine months I have been dealing with a bunch of weird symptoms that included tingling in both legs, electric buzzes or pulsations in my head, intermittent nausea, exhaustion, brain fog, unexplained weight loss and intermittent chest pain that felt like a heart attack but turned out to be GI related. I've been to over ten doctors in the last seven months and for a while it was looking like all of my problems were related to the over-production of histamine. That may still be a contributing factor, we'll see.
Then a few weeks ago I lost the ability to swallow normally. It started to feel like food was getting stuck in my throat and after that sensation lasted for four straight days, I got worried that there was actually something stuck in there.
Everyone told me that it would be okay, it was just acid reflux or some kind of esophagitis. I spent a long time trying to find a GI or ENT that could perform a transnasal esophagoscopy (TNE) on me to figure out what was wrong without needing to use sedation, since I react badly to so many medications and chemicals.
The ENT I saw referred me for a modified barium swallow with cine-esophogram, and I feel so blessed that he did. I was able to arrange one for the very following day thanks to an absolutely amazing speech-language pathologist working for one of the best hospitals in my town. She moved heaven and earth around to squeeze me in before her summer vacation. I will never be able to thank her enough.
As it turned out, the results really weren't what we were expecting. Thankfully, there was no sign whatsoever of cancer or a stricture. That is certainly a huge relief.
Unfortunately, there was no sign of esophagitis either. Rather, what the radiologist found was a "lazy esophagus". As he described it to me, the wave function was simply not working correctly. He asked if I had been diagnosed with any other problems and when I told him that I do suffer from both Hashimoto's Thyroiditis and also Interstitial Cystitis/Vulvadynia, his eyebrows shot up and his eyes widened. He nodded. Then he said, "I think what is happening with your esophagus is directly related to your autoimmune conditions." Then he asked me if I often get a funny feeling in my mouth after eating something, and if it is ever coupled with tingling or cramping in my hands.
He was pointing toward Scleroderma.
I am a 34 year old woman, which happens to be the exact demographic that scleroderma usually affects. It often goes hand in hand with hypothyroidism, and its presenting symptom can often be esophageal dysmotility.
When I looked up scleroderma on the internet, what I really wanted to know was, what is the life span or prognosis.
I have three children under the age of five. My greatest fear is leaving them and that they will not have me as their mother to help them navigate childhood and their teen years. They mean everything to me, along with my husband.
When you read about scleroderma online, things look pretty bleak. Apparently there are three different kinds - limited, diffuse and sine. Some people get only skin involvement which progresses very slowly over many years, and they generally have an excellent prognosis in terms of life span.
Others have a fast moving, aggressive form of scleroderma that spreads quickly across many body surfaces and affects internal organs.
The limited scleroderma (formerly CREST) stands for calcinosis, Raynaud's Phenomenon, Esophageal involvement, Sclerodactyly (a tapering deformity of fingers) and Telangiectasia (small red spots on face or inside mouth).
Scleroderma Sine Scleroderma is where you have internal organ involvement but no obvious skin problems. This happens in up to 5% of patients.
The scariest thing about learning all this information for me has been trying to determine what kind of scleroderma I am presenting with, if that is indeed what I have. I have suffered for years from mild Raynaud's syndrome and GI complaints, never guessing for one second that it could be part of a greater illness. At the present time I have zero skin involvement and I know that my kidneys and heart are in great shape. So, I will need to get my lungs checked and then perhaps I can take a deep breath. CREST traditionally has a much better prognosis than diffuse, although anything can happen to anyone!
The next few months are going to be full of taking steps to get an actual diagnosis, hopefully get my esophagus working again, and trying out the Antibiotic Protocol. I am very excited and hopeful about this, and grateful for the advice and input from Roadback Foundation volunteers. Already I have found two doctors nearby who are willing to treat me with antibiotics and who have both had good success with the protocol. Reading all of the remission stories for Rheumatoid Arthritis and Scleroderma has given me so much hope. This protocol works for so many people, even people who have been much sicker than me for many years. I have a lot of confidence that it is going to work for me too. I am so thankful.
I look at this blog as a way to chronicle my healing journey and raise awareness about alternative methods of healing. Although many doctors will tell you that the AP does not work for scleroderma, I have read hundreds of anecdotal reports now from real people (with pictures, names, email addresses, etc.) who state definitively that it does work. I look forward to being one of those people, and I hope that some day my blog will give hope to another newly diagnosed person terrified by what they are learning and facing.
Much love and healing to you.
Then a few weeks ago I lost the ability to swallow normally. It started to feel like food was getting stuck in my throat and after that sensation lasted for four straight days, I got worried that there was actually something stuck in there.
Everyone told me that it would be okay, it was just acid reflux or some kind of esophagitis. I spent a long time trying to find a GI or ENT that could perform a transnasal esophagoscopy (TNE) on me to figure out what was wrong without needing to use sedation, since I react badly to so many medications and chemicals.
The ENT I saw referred me for a modified barium swallow with cine-esophogram, and I feel so blessed that he did. I was able to arrange one for the very following day thanks to an absolutely amazing speech-language pathologist working for one of the best hospitals in my town. She moved heaven and earth around to squeeze me in before her summer vacation. I will never be able to thank her enough.
As it turned out, the results really weren't what we were expecting. Thankfully, there was no sign whatsoever of cancer or a stricture. That is certainly a huge relief.
Unfortunately, there was no sign of esophagitis either. Rather, what the radiologist found was a "lazy esophagus". As he described it to me, the wave function was simply not working correctly. He asked if I had been diagnosed with any other problems and when I told him that I do suffer from both Hashimoto's Thyroiditis and also Interstitial Cystitis/Vulvadynia, his eyebrows shot up and his eyes widened. He nodded. Then he said, "I think what is happening with your esophagus is directly related to your autoimmune conditions." Then he asked me if I often get a funny feeling in my mouth after eating something, and if it is ever coupled with tingling or cramping in my hands.
He was pointing toward Scleroderma.
I am a 34 year old woman, which happens to be the exact demographic that scleroderma usually affects. It often goes hand in hand with hypothyroidism, and its presenting symptom can often be esophageal dysmotility.
When I looked up scleroderma on the internet, what I really wanted to know was, what is the life span or prognosis.
I have three children under the age of five. My greatest fear is leaving them and that they will not have me as their mother to help them navigate childhood and their teen years. They mean everything to me, along with my husband.
When you read about scleroderma online, things look pretty bleak. Apparently there are three different kinds - limited, diffuse and sine. Some people get only skin involvement which progresses very slowly over many years, and they generally have an excellent prognosis in terms of life span.
Others have a fast moving, aggressive form of scleroderma that spreads quickly across many body surfaces and affects internal organs.
The limited scleroderma (formerly CREST) stands for calcinosis, Raynaud's Phenomenon, Esophageal involvement, Sclerodactyly (a tapering deformity of fingers) and Telangiectasia (small red spots on face or inside mouth).
Scleroderma Sine Scleroderma is where you have internal organ involvement but no obvious skin problems. This happens in up to 5% of patients.
The scariest thing about learning all this information for me has been trying to determine what kind of scleroderma I am presenting with, if that is indeed what I have. I have suffered for years from mild Raynaud's syndrome and GI complaints, never guessing for one second that it could be part of a greater illness. At the present time I have zero skin involvement and I know that my kidneys and heart are in great shape. So, I will need to get my lungs checked and then perhaps I can take a deep breath. CREST traditionally has a much better prognosis than diffuse, although anything can happen to anyone!
The next few months are going to be full of taking steps to get an actual diagnosis, hopefully get my esophagus working again, and trying out the Antibiotic Protocol. I am very excited and hopeful about this, and grateful for the advice and input from Roadback Foundation volunteers. Already I have found two doctors nearby who are willing to treat me with antibiotics and who have both had good success with the protocol. Reading all of the remission stories for Rheumatoid Arthritis and Scleroderma has given me so much hope. This protocol works for so many people, even people who have been much sicker than me for many years. I have a lot of confidence that it is going to work for me too. I am so thankful.
I look at this blog as a way to chronicle my healing journey and raise awareness about alternative methods of healing. Although many doctors will tell you that the AP does not work for scleroderma, I have read hundreds of anecdotal reports now from real people (with pictures, names, email addresses, etc.) who state definitively that it does work. I look forward to being one of those people, and I hope that some day my blog will give hope to another newly diagnosed person terrified by what they are learning and facing.
Much love and healing to you.
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