The cleanse with Standard Process "ends" on Saturday, but it doesn't really end, as the next stage is to slowly reintroduce foods into my body and maintain the same type of diet essentially. I'm willing to go the long haul with a new diet. I particularly feel good and not sure if it's because i've been working from home (due to the hurricane in NY) and so i'm not moving as much, but i noticed when I used my hands a lot the other day, I suffered for it.... Whereas, for two days in a row, I physically felt pretty good.
I'm working through the medical records to my doctor and will be seeing my doctors in the next couple of weeks. I continue to take 10 mg of Prednisone each day, and the methotrexate and folic acid doses.
Overall, i'm slimming down (without much exercise except walking; haven't been walking much due to being at home working. I still have severe pain in my feet, and pain in my hands and arms/elbows/wrists.... I"m looking forward to the day when I feel no pain and am "normal."
Wednesday, November 7, 2012
Friday, November 2, 2012
Your Medical Rights & How Doctors Respond...
Your Medical Rights & How Doctors Respond
So, I left a message with the Mayo Clinic and received a call back yesterday. I was so excited at the possibility of going to the Mayo Clinic for a review and visit of my current situation. What I Found was the Rheumatology department is no longer taking new patients, but if my general practitioner calls and makes a referral, they will take me and make an appointment with me for a Rheumatologist, Toxicologist, AND a General Practitioner. Here is where it gets interesting.
Up until this point in time, I thought my doctors were great, caring, attentive, with some minor differences from my experience with my Chicago doctors (i've only lived in NY for 3 1/2 years),e.g., no evening or weekend appointments are available, my general practitioner only talks to you if you go into the office, doesn't give you test results over the phone, you must go to this office, etc.
This morning, with great excitement, I called my general practitioner whom i really like and respect (He has his Ph.D and M.D. and is really good and referred by another doctor), to tell him about my Mayo Clinic call and that I am seeking a referral. I spoke with this wife, who works in his office, not the doctor. First, I found out they don't have any records from my Rheumatologist, except for the initial consultation letter dated May 25. Second, I asked her to please confirm / help me understand if he (my general doc) is supposed to be the "center" of it all and be in communication with my other doctors and treat me "holistically" by reviewing my medical plan and ensuring i'm getting the best care, and she confirmed. However, she, too, was defensive (see below about defensiveness).
I asked the question about the general doc being my main doctor who is responsible for pulling together all of the information from all of my specialists because my cardiologist and rheumatologist told me that's the case, and the Mayo Clinic confirmed it by saying if I go to the Mayo Clinic and see any number of doctors that they all group together, discuss my case together, and provide me with a holistic report worked on by ALL OF THEM, and that the general practitioner has the responsibility to be the center of it all. That's not the case in NY with my current doctor schema. In fact, I OWN MY MEDICAL PATH AND I HAVE TO PUSH AND PUSH for information, e.g., I found a link in silicone and Mirena IUD and found the tests to test for silicone. I also called and left messages with several toxicologists in NYC and NO ONE has called me back. She said that he will not call and solicit conversations with my other doctors, that I have to ensure he gets the records, and make an appointment with him, and he'll discuss it with me. HUH? Is that normal? I don't know. Why wouldn't he call and talk to my other doctors about my case?
Back to the point, while speaking with my general practitioner's doctor's wife ( remember they also helped find the silicone test for me to give), she confirmed the doctor just works this way and won't talk to me on the phone, and in order to provide a "referral" to the Mayo Clinic he needs to understand what's going on. Okay, that's fair.
So...I called my Ob/GYN, my Rheumatologist's office, and next my eye doctor's office to get a copy of my file for myself and to send a copy of my entire file to my General Practitioner.
My Rheumatologist appears to be nice and concerned but very defensive. IN fact, during my last in office visit with her, she has said to me she feels "attacked" and I said to her my experience is that she is defensive. She admitted she "sounded" and may appear to be defensive because "I just want to help you and do what i can to get you better and i'm frustrated." Okay, why are you frustrated? I'm asking for help on the silicone in my blood, she knows nothing about it, but doesn't think it has ANYTHING AT ALL to do with my seronegative RA diagnosis, and conceded that she agreed that (a) I do the 21 day cleanse, (b) that i could see a toxicologists for help and that she would talk to him/her, (c) if she is so confident about her diagnosis as me having seronegative RA and that the IUD didn't cause it or create this in its intensity i've suffered, then why would she be defensive? Defensive is rooted in feeling "threatened" -- why would my doctor be threatened by my questions? [Link to a good site about defensive behavior: http://www.healthy.net/Health/Article/Defensive_Communication/2533]
In her defense, I do believe she is doing the best she can, however, i'm starting to see different sides and behaviors with my doctors when I "question them" and I find that interesting. For example, when I call her, she calls me back pretty immediately (or within an hour or two) and she is responsive. Today, she called me back, and I told her I spoke with my general practitioner and he only has a letter from her dated May 25, and I'd like to ensure he gets a full copy, including her notes, to him for review, and she said they don't send all records to all doctors all the time, and I said, that's okay, I understand, but now i'm asking you to send a copy of my entire file, including your notes, to my doctor, please as I'm having all of my doctors do the same so I can sit with him and talk about my health plan. She said okay no problem.
I then asked her (my rheumatologist) to send me a copy of my entire file including her notes, and she said fine, but she won't send her notes, and I asked "why?" And she said because often the notes are scribbles and it can cause confusion with patients, etc. And I said, "but it's my right to have your notes and are you saying you won't send them?" She said, with frustration in her tone "fine, i'll send you everything." I said, "Thank you." I reiterated that I am in the middle of the cleanse, that i'm not feeling better in terms of pain (not that she asked how I was doing, she didn't), and that I would make an appointment to see here the week after next, and that i'll be done with my cleanse next weekend. She said, fine.
Due to the hurricane, a lot of businesses are short staffed or offices are closed, so I'll have to follow up next week with my OB-GYN, because their office is closed due to the hurricane. I'll be making a call to my eye doctor shortly to also request a copy of my file and that an entire copy go to my general practitioner. The goal, of course, is to have my general practitioner to review my entire file from all of my specialists and discuss it together and ask, in person, for a referral to the Mayo Clinic. I continue to be patient, open, and once my main doc has all of my information, hear what he has to say. He is a very smart man and I am maintaining my optimism at this point. Let's see what happens when I see him to holistically review all of my medical records to date with him and what he'll think about "what's next" in terms of a second and third opinion, because that's what i want and I have a right to it.
Finally, as for my health, I continue to have pain in my joints, most troubling joints are my fingers, wrists, elbows, feet, and knees (when I walk up or down stairs). My tendons hurt as well particularly in my wrists and my muscles around my joints (wrists, elbows, shoulders, etc).... I"m on 10 mg of steroids per day, and 8 pills of methotrexate per week, along with daily dose of folic acid, and interestingly, my Rheumatologist didn't even ask how i'm doing. Usually she will ask "how are you feeling?", she is on the defensive and I wonder why besides the obvious that i've already alluded? If she really cares about how I feel, why didn't she ask? Why is she defensive when I asked for my medical record including her notes? Why is she annoyed by me asking and "sighing" on the other end of the phone? Why would ANY DOCTOR care if I ask hard questions? Why would any doctor be "defensive" or "frustrated" or "annoyed" with my questions about my health when I'm suffering in pain and living on steroids, and about to take Humira along with the other drugs per my RA doc?
I want to be SURE i have the correct diagnosis, and I want to be sure by getting a second, third, and even fourth opinion if necessary. Why is that a bad thing? If my doctor made a mistake, okay, at least if she was cooperative and did have the same goal as me to get me better, why would it matter?
Some great links about your medical rights by State. Here is a link to a PDF for New York State, too. (Just copy and paste the links herein into your browser.)
NY State: http://hpi.georgetown.edu/privacy/stateguides/ny/ny.pdf
Medical Records & Privacy: http://hpi.georgetown.edu/privacy/records.html
How to Request Your Medical Records: http://journal.ahima.org/2012/03/01/how-to-request-your-medical-records/
As for the cleanse, i am slimming down by the day. My body feels good in terms of feeling "healthy", except for the pain and immobility when I have bad days despite the steroids, e.g., when I use my hands, walk a lot, etc. i suffer for it.... Added protein to diet on DAy 11, and will end the cleanse next Saturday, Nov. 10. I'll have an appointment scheduled with my general practitioner that week to (1) redo my silicone serum test, and (2) review my medical records and have a discussion with him about a referral for a second opinion at the Mayo Clinic.
Since the removal of the IUD, i haven't had a period. NOTHING. I presume it's because I still have synthetic hormones in my body preventing it from occurring. I suppose I need to see my OB/GYN for a follow up to my IUD removal. My OB/GYN, as I already stated in earlier post, has NO IDEA about silicone and the Mirena IUD and has NO patient who has had an adverse affect using the IUD nor any patient who has had any reaction like mine or any silicone in their blood, that she's aware of.
Time will tell...it always does. In the meantime, I continue to be grateful for my safety and warm house with electricity. So many others are not as fortunate as we are today...
Until the next post as I share my progress and experience. I'm still seeking anyone who can provide information that is similar to my experience. Information is power.
So, I left a message with the Mayo Clinic and received a call back yesterday. I was so excited at the possibility of going to the Mayo Clinic for a review and visit of my current situation. What I Found was the Rheumatology department is no longer taking new patients, but if my general practitioner calls and makes a referral, they will take me and make an appointment with me for a Rheumatologist, Toxicologist, AND a General Practitioner. Here is where it gets interesting.
Up until this point in time, I thought my doctors were great, caring, attentive, with some minor differences from my experience with my Chicago doctors (i've only lived in NY for 3 1/2 years),e.g., no evening or weekend appointments are available, my general practitioner only talks to you if you go into the office, doesn't give you test results over the phone, you must go to this office, etc.
This morning, with great excitement, I called my general practitioner whom i really like and respect (He has his Ph.D and M.D. and is really good and referred by another doctor), to tell him about my Mayo Clinic call and that I am seeking a referral. I spoke with this wife, who works in his office, not the doctor. First, I found out they don't have any records from my Rheumatologist, except for the initial consultation letter dated May 25. Second, I asked her to please confirm / help me understand if he (my general doc) is supposed to be the "center" of it all and be in communication with my other doctors and treat me "holistically" by reviewing my medical plan and ensuring i'm getting the best care, and she confirmed. However, she, too, was defensive (see below about defensiveness).
I asked the question about the general doc being my main doctor who is responsible for pulling together all of the information from all of my specialists because my cardiologist and rheumatologist told me that's the case, and the Mayo Clinic confirmed it by saying if I go to the Mayo Clinic and see any number of doctors that they all group together, discuss my case together, and provide me with a holistic report worked on by ALL OF THEM, and that the general practitioner has the responsibility to be the center of it all. That's not the case in NY with my current doctor schema. In fact, I OWN MY MEDICAL PATH AND I HAVE TO PUSH AND PUSH for information, e.g., I found a link in silicone and Mirena IUD and found the tests to test for silicone. I also called and left messages with several toxicologists in NYC and NO ONE has called me back. She said that he will not call and solicit conversations with my other doctors, that I have to ensure he gets the records, and make an appointment with him, and he'll discuss it with me. HUH? Is that normal? I don't know. Why wouldn't he call and talk to my other doctors about my case?
Back to the point, while speaking with my general practitioner's doctor's wife ( remember they also helped find the silicone test for me to give), she confirmed the doctor just works this way and won't talk to me on the phone, and in order to provide a "referral" to the Mayo Clinic he needs to understand what's going on. Okay, that's fair.
So...I called my Ob/GYN, my Rheumatologist's office, and next my eye doctor's office to get a copy of my file for myself and to send a copy of my entire file to my General Practitioner.
My Rheumatologist appears to be nice and concerned but very defensive. IN fact, during my last in office visit with her, she has said to me she feels "attacked" and I said to her my experience is that she is defensive. She admitted she "sounded" and may appear to be defensive because "I just want to help you and do what i can to get you better and i'm frustrated." Okay, why are you frustrated? I'm asking for help on the silicone in my blood, she knows nothing about it, but doesn't think it has ANYTHING AT ALL to do with my seronegative RA diagnosis, and conceded that she agreed that (a) I do the 21 day cleanse, (b) that i could see a toxicologists for help and that she would talk to him/her, (c) if she is so confident about her diagnosis as me having seronegative RA and that the IUD didn't cause it or create this in its intensity i've suffered, then why would she be defensive? Defensive is rooted in feeling "threatened" -- why would my doctor be threatened by my questions? [Link to a good site about defensive behavior: http://www.healthy.net/Health/Article/Defensive_Communication/2533]
In her defense, I do believe she is doing the best she can, however, i'm starting to see different sides and behaviors with my doctors when I "question them" and I find that interesting. For example, when I call her, she calls me back pretty immediately (or within an hour or two) and she is responsive. Today, she called me back, and I told her I spoke with my general practitioner and he only has a letter from her dated May 25, and I'd like to ensure he gets a full copy, including her notes, to him for review, and she said they don't send all records to all doctors all the time, and I said, that's okay, I understand, but now i'm asking you to send a copy of my entire file, including your notes, to my doctor, please as I'm having all of my doctors do the same so I can sit with him and talk about my health plan. She said okay no problem.
I then asked her (my rheumatologist) to send me a copy of my entire file including her notes, and she said fine, but she won't send her notes, and I asked "why?" And she said because often the notes are scribbles and it can cause confusion with patients, etc. And I said, "but it's my right to have your notes and are you saying you won't send them?" She said, with frustration in her tone "fine, i'll send you everything." I said, "Thank you." I reiterated that I am in the middle of the cleanse, that i'm not feeling better in terms of pain (not that she asked how I was doing, she didn't), and that I would make an appointment to see here the week after next, and that i'll be done with my cleanse next weekend. She said, fine.
Due to the hurricane, a lot of businesses are short staffed or offices are closed, so I'll have to follow up next week with my OB-GYN, because their office is closed due to the hurricane. I'll be making a call to my eye doctor shortly to also request a copy of my file and that an entire copy go to my general practitioner. The goal, of course, is to have my general practitioner to review my entire file from all of my specialists and discuss it together and ask, in person, for a referral to the Mayo Clinic. I continue to be patient, open, and once my main doc has all of my information, hear what he has to say. He is a very smart man and I am maintaining my optimism at this point. Let's see what happens when I see him to holistically review all of my medical records to date with him and what he'll think about "what's next" in terms of a second and third opinion, because that's what i want and I have a right to it.
Finally, as for my health, I continue to have pain in my joints, most troubling joints are my fingers, wrists, elbows, feet, and knees (when I walk up or down stairs). My tendons hurt as well particularly in my wrists and my muscles around my joints (wrists, elbows, shoulders, etc).... I"m on 10 mg of steroids per day, and 8 pills of methotrexate per week, along with daily dose of folic acid, and interestingly, my Rheumatologist didn't even ask how i'm doing. Usually she will ask "how are you feeling?", she is on the defensive and I wonder why besides the obvious that i've already alluded? If she really cares about how I feel, why didn't she ask? Why is she defensive when I asked for my medical record including her notes? Why is she annoyed by me asking and "sighing" on the other end of the phone? Why would ANY DOCTOR care if I ask hard questions? Why would any doctor be "defensive" or "frustrated" or "annoyed" with my questions about my health when I'm suffering in pain and living on steroids, and about to take Humira along with the other drugs per my RA doc?
I want to be SURE i have the correct diagnosis, and I want to be sure by getting a second, third, and even fourth opinion if necessary. Why is that a bad thing? If my doctor made a mistake, okay, at least if she was cooperative and did have the same goal as me to get me better, why would it matter?
Some great links about your medical rights by State. Here is a link to a PDF for New York State, too. (Just copy and paste the links herein into your browser.)
NY State: http://hpi.georgetown.edu/privacy/stateguides/ny/ny.pdf
Medical Records & Privacy: http://hpi.georgetown.edu/privacy/records.html
How to Request Your Medical Records: http://journal.ahima.org/2012/03/01/how-to-request-your-medical-records/
As for the cleanse, i am slimming down by the day. My body feels good in terms of feeling "healthy", except for the pain and immobility when I have bad days despite the steroids, e.g., when I use my hands, walk a lot, etc. i suffer for it.... Added protein to diet on DAy 11, and will end the cleanse next Saturday, Nov. 10. I'll have an appointment scheduled with my general practitioner that week to (1) redo my silicone serum test, and (2) review my medical records and have a discussion with him about a referral for a second opinion at the Mayo Clinic.
Since the removal of the IUD, i haven't had a period. NOTHING. I presume it's because I still have synthetic hormones in my body preventing it from occurring. I suppose I need to see my OB/GYN for a follow up to my IUD removal. My OB/GYN, as I already stated in earlier post, has NO IDEA about silicone and the Mirena IUD and has NO patient who has had an adverse affect using the IUD nor any patient who has had any reaction like mine or any silicone in their blood, that she's aware of.
Time will tell...it always does. In the meantime, I continue to be grateful for my safety and warm house with electricity. So many others are not as fortunate as we are today...
Until the next post as I share my progress and experience. I'm still seeking anyone who can provide information that is similar to my experience. Information is power.
Wednesday, October 31, 2012
Day 11 of Detox with Standard Process
Today is Day 11 of my detox with Standard Process. Overall, it's going well. I feel good, except i have cravings for the bad stuff (I really want pizza!)... I've continued with a cup of coffee every morning, and drink decaf & herbal teas throughout the day. (My boyfriend is doing it with me!) Today, I can add protein to my meals. Amazingly, we went unscathed during Hurricane Sandy this week and were stocked to eat only fruits and vegetables even if we lost power. So many of my colleagues and friends & family in NY, CT, and NJ are not as lucky as us, so I'm grateful to have my home with power so I can type this message today.
The most frustrating part of this process is having to add another 5 mg of prednisone to my daily medications and I still have pain. I'm not back on 10 mg, which is still nothing compared to the 30 i was on, but I had a bad day/night yesterday and it hurt so bad that I wanted to take another steroid pill, but I didn't. I woke up feeling better, albeit still in pain but not the kind that makes you cry. I'm trying to function with minimal steroids and while it's not ridding me of all the pain, at least it's providing a bit of a buffer, and the suffering is becoming the norm anyway, so as long as I can move & the intensity of the pain (the edge of it) isn't keeping me from moving at all, i'm okay.
I still have to function day to day and go to work and use my hands at home, at work. It's a catch 22, doing every day life still has to happen, but I suffer for it with more pain, more swelling, despite the drugs (steroids, methotrexate, and folic acid). It's hard to describe to someone what it feels like and how much it hurts...only another person who suffers from it can understand.
Today, I submitted an application to make an appointment with the Mayo Clinic for a second opinion. Should hear something back in the next few days. I'm becoming more frustrated and feel this pain will never go away, and while I'll continue to detox and follow the diet plan, i'm not sure this will fix the problem in the short term, e.g., get me off steroids and rid me of the intense pain and debilitation. I think a good, healthy diet is important and I'll continue with it as it will help me and hopefully i'll be able to do more than just walk for exercise. I plan to start swimming, too.
I know, I'm not positive today, because I'm frustrated. I want to understand how and why this silicone is in my body and how long will it take to get rid of it? When I'm rid of it, will the symptoms disappear or did the silicone kick off my disease and it's here to stay? Or, will I be dealing with this for the rest of my life and taking medications like Methotrexate, Humira, etc.? I Just want this to GO AWAY.
Will Mirena ever talk about the silicone side effects that could occur in a woman's body???? Or will that be suppressed as the "outlier" in woman who respond this way to the IUD. Something has to happen...
Only time can tell....
The most frustrating part of this process is having to add another 5 mg of prednisone to my daily medications and I still have pain. I'm not back on 10 mg, which is still nothing compared to the 30 i was on, but I had a bad day/night yesterday and it hurt so bad that I wanted to take another steroid pill, but I didn't. I woke up feeling better, albeit still in pain but not the kind that makes you cry. I'm trying to function with minimal steroids and while it's not ridding me of all the pain, at least it's providing a bit of a buffer, and the suffering is becoming the norm anyway, so as long as I can move & the intensity of the pain (the edge of it) isn't keeping me from moving at all, i'm okay.
I still have to function day to day and go to work and use my hands at home, at work. It's a catch 22, doing every day life still has to happen, but I suffer for it with more pain, more swelling, despite the drugs (steroids, methotrexate, and folic acid). It's hard to describe to someone what it feels like and how much it hurts...only another person who suffers from it can understand.
Today, I submitted an application to make an appointment with the Mayo Clinic for a second opinion. Should hear something back in the next few days. I'm becoming more frustrated and feel this pain will never go away, and while I'll continue to detox and follow the diet plan, i'm not sure this will fix the problem in the short term, e.g., get me off steroids and rid me of the intense pain and debilitation. I think a good, healthy diet is important and I'll continue with it as it will help me and hopefully i'll be able to do more than just walk for exercise. I plan to start swimming, too.
I know, I'm not positive today, because I'm frustrated. I want to understand how and why this silicone is in my body and how long will it take to get rid of it? When I'm rid of it, will the symptoms disappear or did the silicone kick off my disease and it's here to stay? Or, will I be dealing with this for the rest of my life and taking medications like Methotrexate, Humira, etc.? I Just want this to GO AWAY.
Will Mirena ever talk about the silicone side effects that could occur in a woman's body???? Or will that be suppressed as the "outlier" in woman who respond this way to the IUD. Something has to happen...
Only time can tell....
Thursday, October 18, 2012
Today, I continue to do Internet research. I'm trying to find as much information as possible. The information my doctors' are unwilling to find. Today, I found another blog (below) and on her blog she posts the lightparty website that talks about silicone poisoning. See below.
http://www.lightparty.com/Health/SiliconePoison.html
http://learning2walkagain.blogspot.com/2012/04/things-that-make-me-go-hmmm.html
I also received my detox box today. I'm going to start the detox on Sunday -- it's a 21 day program. I plan to retake my serum test for silicone at the end of the 21 days and will report on the results.
http://www.lightparty.com/Health/SiliconePoison.html
http://learning2walkagain.blogspot.com/2012/04/things-that-make-me-go-hmmm.html
I also received my detox box today. I'm going to start the detox on Sunday -- it's a 21 day program. I plan to retake my serum test for silicone at the end of the 21 days and will report on the results.
Tuesday, October 16, 2012
Mirena IUD & Rheumatoid Arthritis (RA) and Silicone Toxicity
In April 2012, my OB/GYN said it was time to start thinking about another form of birth control -- one without estrogen. I was on YAZ for almost 12 years, and she proposed Mirena IUD. She just had her third child and had the Mirena IUD inserted, several woman in her office had it, and she couldn't say enough about it. She said the IUD was making a come back. I read the materials, I asked her questions about the side effects, particularly around whether or not I was a good candidate -- i have heart arrhythmia caused by electrical signal problem and am on Beta - Blockers. She said, No. I also checked with my cardiologists, showed him the materials, and he said, okay to get Mirena.
On April 15, 2012, I had the IUD inserted and I stopped my birth control pill. My body IMMEDIATELY went crazy, and that's an understatement. The fatigue, the pain, the chills, the mood swings (I was severely depressed and could barely wake up and think on a daily basis). It felt like my body was attacking itself. It got progressively worse.
A couple weeks after getting IUD, I went on a 7 mile hike, and it almost killed me. That week, I was almost crippled and in pain. Every joint in my body was in pain. The breaking point was about 6 days after the hike the joints in several of my fingers were black and swollen, and had pain in my feet, knees, hips, wrists, and hands. I was scared. I also couldn't close my fists and bend my fingers. It was also very painful. My boyfriend made me go to the emergency room. In the ER i was diagnosed with severe inflammatory joint disorder (every joint in my body was swollen and hurt to the touch). The ER doctors suspected RA (Rheumatoid Arthritis). They took all of the blood work they can take, including Lyme Disease, Hepatatis C, etc.
Of course, I told them about all of the changes my body had experience when I stopped YAZ and had the Mirena IUD inserted and asked if there was any relationship. They didn't think so, but they didn't know. They said my tests would help us rule things out and to follow up with a Rheumatologist.
At this point in time, let me provide the back story regarding my health: 2 years ago, my General Practitioner took my ANA and it was "borderline." About 4 years ago, a rheumatologist in Chicago (where I'm from, I moved to NYC in 2009 and currently live in NYC), also took ANA and it was also borderline. I also have suffered from severe feet pain for the last 3 years, hip pain, back pain. I also have had a lot of eye "issues" and started taking Restatis for dry eyes about 3 years ago. I asked my eye doctor if my eye issues could be related to an auto immune issue, he said no. This was ALL before the IUD and ceasing YAZ.
Back to current time.
I saw my General Practitioner, my cardiologist, and a new Rheumatologist referred to me by my general practitioner. She diagnosed me with sero-negative RA. All of my tests came back normal, including the inflammatory tests, despite the obvious inflammation throughout my entire body and my pain and debilitation. She said at one point that "you have an angry and aggressive form of the disease."
I asked every doctor i had about the IUD and YAZ connection to my recent issues and pain and inflammation. Every doctor said "not a chance" and "it's difficult to link a causal relationship between the YAZ/IUD and your recent issues because anything can set off an auto immune disease...."
Okay, fine. My instinct and common sense told me:
1. I stopped yaz and got the IUD and IMMEDIATELY my body went crazy
2. Within a few weeks, as I got worse each day, a hike sent me into some point of no return
3. I had serious inflammation and pain throughout my entire body and i don't think it's s coincidence that this all started THE DAY i got the MIRENA IUD INSERTED....
Therefore, I was reluctant to start methotrexate right away. I started steroids (Prednisone) because I couldn't function without them (e.g., couldn't walk, move, etc.). ABout 12 weeks ago, I broke down and said "fine, i'll start the meds and see if they work." Last night, I took my 12th dose of 8 methotrexate pills (you take your dose once a week on this drug) and it has not worked. How do you know it's not working? You decrease the steroids to the point of nothing, if you still have symptoms and pain (i do), you know the disease isn't in "remission."
About a month ago, my instinct kept nagging at me that i'm missing something. And, late on a Saturday night, I googled "Mirena+RA" on my Droid SmartPhone. When I found "Silicone Toxicity" and read the symptoms of Silicone Toxicity and they MATCHED RA symptoms, I almost died. I was angry, I was happy, my boyfriend said "I told you to remove that IUD immediately after you started with the issues..." However, I'm practical and I believe in science and I believe in my doctors. I trusted them. I called my doctors' that following Monday as I had found two bloods test that test for silicone: Silicone anti-bodies and serum. I called my general practitioner, my rheumatologists, and my OB/gyn to share my revelation and to see what they thought of it. My general practitioner was open to doing the blood test, and went on a quest with "Quest Lab" to find the right lab numbers to do the blood work. My Ob/Gyn said she knew nothing about mirena or silicon toxicity and had NO PATIENTS experience any issues with it. My Rheumatologist also knew "nothing" and didn't think there was any relationship and said I should talk to my ob/gyn who gave me the IUD, because she knows nothing about Mirena and auto-immune diseases etc.
My General Practitioner finally took my blood a few weeks ago, for the serum only, as the lab couldn't find the antibody test, and guess what? it was 'HIGH' and my levels were .19 (normal is .05 to zero). However, my doctor didn't know what to do with it. He doesn't know about silicone toxicity nor how to treat it. He is open to talking to anyone I find to learn more about it because now he is interested in what is going on. I saw my Rheumatologists last week, and gave her a copy of the report, and she still was in denial that there is any relationship, but said she was frustrated she didn't understand, and finally said she was open to talking to any doctor that knew about this and was open to "deferring" her recommended next steps if I wanted to do a "detox" or try something that could help eliminate my silicone from my body. I Didn't bother calling ob/gyn again.
The day I got my blood test for silicone serum, is the day I got the IUD removed, in fact, I had it removed two hours after i had my blood drawn. I immediately started "feeling better." I can only say i feel more normal, my boyfriend said "you are acting normal again".... I still, however, have joint pain. I"m still on steroids. I'm still taking methotrexate and I want to DETOX from the silicone and found Dr. Jennings (http://www.DrJNutrition.com) and also Kristi's blog (http://mylifeaftermirena.blogspot.com/), and have wrote both of them today.
As it stands today, I don't know if the Mirena IUD and the cessation of my YAZ kicked off an auto immune disease (in this case i'm told i have RA), or if i truly have silicone toxicity and when i detox and get all silicone out of my body, my pain and inflammation will disappear.
I DO think, regardless of what happens next, that the Mirena iUD is the cause of my current problems. I don't know if my current problems are permanent or temporary, but TIME WILL TELL. It always does. The most frustrating part has been the gaps between my medical doctors, their denial around silicone and its effects on the body, and the inability to understand or the willingness to learn about the issues the Mirena IUD could be causing to some woman who get it.
I want to hear more and learn more about other woman's experiences with Mirena and if they too have been diagnosed with RA. If they too have done a silicone test, a detox, and what happened next?
I canceled my appointment that was scheduled for tomorrow to get my first Humira injection (a biologic) that my doctor wanted me to start WITH the methotrexate. I NEED TO TRY TO DETOX TO SEE IF IT HELPS. I don't want to ADD any more drugs to my body at this point. I want to get off steroids and feel better. I want my body and my life back.
My doctor wanted me to start Humira (a biologic) and continue taking the 8 pill dose of methotrexate, folic acid, and of course my beta-blockers for my heart.
I finally started methotrexate and folic acid, and it has NOT WORKED. Last week, my doctor wanted me to add Humira injections to the methotrexate tomorrow…I canceled my appt today, because I want to see if I can figure this out and fast.
At this point in time, I'm open to doing a detox to see what happens to my body. I'm still on steroids and in pain because I've been decreasing the dose to see if the other meds are working, they are not…in the meantime, I'm suffering and in severe pain…everywhere.
What can you do to help me? What can I do to help you and any other woman going through this….
I'm concerned that the Mirena IUD is on the market and poisoning women and they are NOT listing it as a side effect. I need to do something...
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