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.
Showing posts with label antibiotic protocol. Show all posts
Showing posts with label antibiotic protocol. Show all posts
Tuesday, July 6, 2010
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.
Subscribe to:
Posts (Atom)