Aa
Idiopathic unidentifiable Auto- Immune Disorder
Greetings and Happy New Year!
I have been plagued with an auto immune disorder/disorders, the complexity and flighty behaviors, far exceeding that of my Gemini traits; I basically get passed around specialties like a hot potato. From a physicians perspective, as a patient, what is an ideal method for mapping out a timeline with my pertinent medical facts such as problem hx list, definitive and speculative diagnosis list, treatments, tests; and so on. I feel like something is being missed or over looked which in my opinion is expected due to the chronic, overwhelming, crazy complexly of my symptoms.
I want to be proactive and empowered patient. My Physicians have been great but I feel like I have too many Drs. and as they say, too many cooks in the kitchen can spoil the stew......
I have been plagued with an auto immune disorder/disorders, the complexity and flighty behaviors, far exceeding that of my Gemini traits; I basically get passed around specialties like a hot potato. From a physicians perspective, as a patient, what is an ideal method for mapping out a timeline with my pertinent medical facts such as problem hx list, definitive and speculative diagnosis list, treatments, tests; and so on. I feel like something is being missed or over looked which in my opinion is expected due to the chronic, overwhelming, crazy complexly of my symptoms.
I want to be proactive and empowered patient. My Physicians have been great but I feel like I have too many Drs. and as they say, too many cooks in the kitchen can spoil the stew......
Niko,
I had the intent to write to you much sooner than this, however, I have 2 teenage boys, 14 and 17; and let me tell you, the apples fell so close to the tree, they are right next to the tree trunk and that in itself, is enough said. ;-) .
Anyway, events past and present that have contributed to my poor psychical health......I think I am in a state of transmutation. I don't fit into "this world" as it is , to begin with, so this process I am going though has been very difficult, due to my environment and life circumstance.
I have survived the horrors of severe childhood traumas and abuse, been given several psychiatric labels, which I find entertaining. I see a holistic therapist with a cognitive /behavioral focus. And she always tells me that I surprise her and that she has never met anyone like me. She says 1.) to survive what I have endured, most people would be very obviously "emotionally damaged" 2.) people with the "labels" that I have been assigned are not aware of their mental illness and rarely are on the philosophical level that I am. I told her just because "society" establishes norms does not make them right or moral, and just because I don't believe in Jesus the same way as what society delegates as the norm, that I prefer to talk to him in the woods, by myself, or sitting quietly; rather than talk about him in a church does not make me strange. I make no apologies for who I am. I will stand by that till the world stops turning and if it earns me the label Schizotypal Personality Disorder , then so be it. i am that i am.
Or I usually remind her that" I am an extraordinary, fabulous freak of nature", having gone through what I have gone through the moment I existed, I am tenacious as all get out, still intact ( some what :-D ) and see human potential for light and goodness in the world. Fredrick Nietzsche said "Be careful when you fight the monsters lest you become one", what this quote says to me is; yes, my past was a nightmare filled with monsters that over time, I could have given in to be shaped by the same fashion and less like the person I desire to be. I feel that there is good reason to for my journey to be tough. 1. when the storms have passed I will have experiential knowledge to help others in need and 2. to share my experience, to show that hope is real and healing possible, believe in possibilities.
I suspect that a non-etiology source is the cause of my ailments right now. I have had a few odd things here and there. Mainly the only symptom of autoimmune disease confirmed and chronic was Erythema Nodosum. My first flare I suspect was when I had strep at age 18 and didn't finish my antibiotic and then it morphed into systemic strep. My second flare was after the birth of my first son in 1994 and I had chronic and recurring flares, my last flare 02/11/2011, and this is the longest remission I have ever had. I was sick a a lot as a kid, I have enviromental allergies, mold, and dust mites are my public enemies number 1. Everything else is random. It seems that when I am exposed to emotionally toxic environments my symptoms become very exaggerated. My last work place sent me into un-explained states of facial angioneurotic edema. I tend to get this mainly around my joints, hands toes, knees, wrists and fingers. These episodes seem to decrease the more I try to eliminate or avoid the negativity. The last two years have been the worst for me, but i see it as a message that I must slow down to receive the lessons and blessings that God has given me because I have much work to do.
I am 37 years old, with two boys ages 17 and 14. I am in the unfortunate and heartbreaking process of a divorce, for the only reason of incompatible parenting styles. I believe that we are to guide children , not act as societies avenging angel when they make mistakes........Times are very difficult right now, I have so much on my plate. Dealing with two teenagers, my divorce, my health, more often that not, this leaves me pretty wiped out. Despite my struggle and sometimes feeling discouraged, I know that God has graced me with a profound strength, even when I don't want it, so feeling sorry for myself is a huge waste of time. I thought that 2010 was a tough round, 2011 knocked me flat on my back, almost got me on a T.K.O; and here is my message for 2012, I'm like Ali, I float like a butterfly and sting like a bee.
I am currently reading a book about reclaiming and healing the feminine and rediscovering the Wild Woman Archtype, The Women Who Run With Wolves, by Clarissa Pinkola- Estes, she is brilliant! Chapter 12 is about rage, anger and forgiveness, there is a folk tale “Crescent Moon Bear”. Clarissa talks about a woman rage causes of the rage and types of rage. I found a powerful message in this chapter about the Raging Bear/ Righteous Rage. The lesson in the story for me is, the trans-formative power of rage. Rage can have immense potential as a tool for change, goodness and enlightenment. By embracing rage, a violent emotion with affection and tenderness rather than giving it free reign, my Raging Bear has been crafted into "Righteous Rage" , helping me to keep my sanity and giving me strength to fight for what is right.
In the middle of all of the chaos this is what i have come to understand about myself:
I know that I can no longer continue the pretense of existing, confined by the shackles of chemical restraints, medications and antidepressants. My physical symptoms, the extreme grief, the feelings of emptiness and hopelessness, the cloying darkness of severe depression and physical ailments do not abate with medications.
I can’t seem to shake my feeling, that I have lost many little pieces my soul. The symptoms of feeling dissociated from a fully engaged life; suffocating on toxic emotional shock, caused by my traumas, my health, circumstances and loss, these symptoms cannot be healed by traditional medicine, psychological counseling or a pill.
I must begin the process of recovering and re-integrating the lost parts of my soul. The time is now, to call back every shard, every sliver of my soul and every part that ever was and still is, "me". It is time to become whole.
Can't wait to hear from ya!
Namaste,
creolemoon74
I had the intent to write to you much sooner than this, however, I have 2 teenage boys, 14 and 17; and let me tell you, the apples fell so close to the tree, they are right next to the tree trunk and that in itself, is enough said. ;-) .
Anyway, events past and present that have contributed to my poor psychical health......I think I am in a state of transmutation. I don't fit into "this world" as it is , to begin with, so this process I am going though has been very difficult, due to my environment and life circumstance.
I have survived the horrors of severe childhood traumas and abuse, been given several psychiatric labels, which I find entertaining. I see a holistic therapist with a cognitive /behavioral focus. And she always tells me that I surprise her and that she has never met anyone like me. She says 1.) to survive what I have endured, most people would be very obviously "emotionally damaged" 2.) people with the "labels" that I have been assigned are not aware of their mental illness and rarely are on the philosophical level that I am. I told her just because "society" establishes norms does not make them right or moral, and just because I don't believe in Jesus the same way as what society delegates as the norm, that I prefer to talk to him in the woods, by myself, or sitting quietly; rather than talk about him in a church does not make me strange. I make no apologies for who I am. I will stand by that till the world stops turning and if it earns me the label Schizotypal Personality Disorder , then so be it. i am that i am.
Or I usually remind her that" I am an extraordinary, fabulous freak of nature", having gone through what I have gone through the moment I existed, I am tenacious as all get out, still intact ( some what :-D ) and see human potential for light and goodness in the world. Fredrick Nietzsche said "Be careful when you fight the monsters lest you become one", what this quote says to me is; yes, my past was a nightmare filled with monsters that over time, I could have given in to be shaped by the same fashion and less like the person I desire to be. I feel that there is good reason to for my journey to be tough. 1. when the storms have passed I will have experiential knowledge to help others in need and 2. to share my experience, to show that hope is real and healing possible, believe in possibilities.
I suspect that a non-etiology source is the cause of my ailments right now. I have had a few odd things here and there. Mainly the only symptom of autoimmune disease confirmed and chronic was Erythema Nodosum. My first flare I suspect was when I had strep at age 18 and didn't finish my antibiotic and then it morphed into systemic strep. My second flare was after the birth of my first son in 1994 and I had chronic and recurring flares, my last flare 02/11/2011, and this is the longest remission I have ever had. I was sick a a lot as a kid, I have enviromental allergies, mold, and dust mites are my public enemies number 1. Everything else is random. It seems that when I am exposed to emotionally toxic environments my symptoms become very exaggerated. My last work place sent me into un-explained states of facial angioneurotic edema. I tend to get this mainly around my joints, hands toes, knees, wrists and fingers. These episodes seem to decrease the more I try to eliminate or avoid the negativity. The last two years have been the worst for me, but i see it as a message that I must slow down to receive the lessons and blessings that God has given me because I have much work to do.
I am 37 years old, with two boys ages 17 and 14. I am in the unfortunate and heartbreaking process of a divorce, for the only reason of incompatible parenting styles. I believe that we are to guide children , not act as societies avenging angel when they make mistakes........Times are very difficult right now, I have so much on my plate. Dealing with two teenagers, my divorce, my health, more often that not, this leaves me pretty wiped out. Despite my struggle and sometimes feeling discouraged, I know that God has graced me with a profound strength, even when I don't want it, so feeling sorry for myself is a huge waste of time. I thought that 2010 was a tough round, 2011 knocked me flat on my back, almost got me on a T.K.O; and here is my message for 2012, I'm like Ali, I float like a butterfly and sting like a bee.
I am currently reading a book about reclaiming and healing the feminine and rediscovering the Wild Woman Archtype, The Women Who Run With Wolves, by Clarissa Pinkola- Estes, she is brilliant! Chapter 12 is about rage, anger and forgiveness, there is a folk tale “Crescent Moon Bear”. Clarissa talks about a woman rage causes of the rage and types of rage. I found a powerful message in this chapter about the Raging Bear/ Righteous Rage. The lesson in the story for me is, the trans-formative power of rage. Rage can have immense potential as a tool for change, goodness and enlightenment. By embracing rage, a violent emotion with affection and tenderness rather than giving it free reign, my Raging Bear has been crafted into "Righteous Rage" , helping me to keep my sanity and giving me strength to fight for what is right.
In the middle of all of the chaos this is what i have come to understand about myself:
I know that I can no longer continue the pretense of existing, confined by the shackles of chemical restraints, medications and antidepressants. My physical symptoms, the extreme grief, the feelings of emptiness and hopelessness, the cloying darkness of severe depression and physical ailments do not abate with medications.
I can’t seem to shake my feeling, that I have lost many little pieces my soul. The symptoms of feeling dissociated from a fully engaged life; suffocating on toxic emotional shock, caused by my traumas, my health, circumstances and loss, these symptoms cannot be healed by traditional medicine, psychological counseling or a pill.
I must begin the process of recovering and re-integrating the lost parts of my soul. The time is now, to call back every shard, every sliver of my soul and every part that ever was and still is, "me". It is time to become whole.
Can't wait to hear from ya!
Namaste,
creolemoon74
Hey creolemoon74,
I'm not surprised at all with all the negative findings.
IGeneX is the golden standard and if you order the complete Lyme, Mycoplasma and Co-infections panel, you are getting the best
that is available to you. If you have an LLMD then you have a real chance of getting somewhere with this.
My intuition is much stronger than my intellect- and I just know that you have the capability to not only beat this disorder, but to reach your ultimate true potential-physically, emotionally and spiritually- and excel!
There's a tremendous amount of energy within you, ready to be released.
I'm glad you have connected well with your Scholar Doctor-it's a rare event!
Please let me know more about you and your situation.
Past events, traumas, anything that could cause an imbalance in your life.
You are on the right path, so close. Something is going to give soon.
Take care.
Namaste!
I'm not surprised at all with all the negative findings.
IGeneX is the golden standard and if you order the complete Lyme, Mycoplasma and Co-infections panel, you are getting the best
that is available to you. If you have an LLMD then you have a real chance of getting somewhere with this.
My intuition is much stronger than my intellect- and I just know that you have the capability to not only beat this disorder, but to reach your ultimate true potential-physically, emotionally and spiritually- and excel!
There's a tremendous amount of energy within you, ready to be released.
I'm glad you have connected well with your Scholar Doctor-it's a rare event!
Please let me know more about you and your situation.
Past events, traumas, anything that could cause an imbalance in your life.
You are on the right path, so close. Something is going to give soon.
Take care.
Namaste!
Niko,
I am very interested in learning more from you. I find it very interesting your mention of Lyme Disease. I am currently ready to lock horns with my physicians on this subject, in terms of my undefinable symptoms for the following reasons......
1. I had a lot of exposure to the out doors, in Utah/ Idaho, had a petichial rash and was really sick around age 9. This region is know for Rocky Mountain Spotted fever.
2. I have now had 2 lyme tesst with equivical positives and confirmed negative with Westernblot- no bands detected .
First Test: age 12 (1987) I had an equivical positive value of 98 (ELISA ref range less than 0.90- negative, 0.90 -1.25 Equivical, > 1.25 positive). My test was sent out for confirmation and no bands were detected.
Second Test: Two months ago, not sure what test was used for the initial draw, lab value stated ABNORMAL , sent out for confirmation by Western blot. Westernblot confirmed NEG- No bands detected.
I really don't feel like I am unreasonable in asking that this historical lab vs my new lab results be looked at bit more closely, as I have also recently been diagnosed with a brain lesion that in appearance is that of classic MS, but is undefinable due to only having one lesion. I am told that MS diagnosis cant be made based on a single lesion confirmed by an MRI, so now, I am now being followed by an MS clinic for min of a year.
I have had SOOOOOO many serology tests, to date, and scheduled for more.....UUUGGGHH!
All of my test have been normal thus far with the exception of a few freak incidents, CPK has gone out of range a few time for no reason, mild abnormal values associated with the Lupus anti- coag test but not enough to indicate clinical significance. ASO (streptosilin) was high a few times early 2000's , and I must mention that I never get strep even when I am exposed.
I am considered a major PIA by some medical practitioners, due to my diligent researching. However, I have learned to request the Physician to review my information and to be informed about my history before seeing me as I want to be sure that we will be a good fit. This worked out in my quest for a new neurologist, my new Neuro is awesome, I refer to her as my Scholar Doctor.....
Anyway, if your interested in hearing more let me know!
Namaste!
I am very interested in learning more from you. I find it very interesting your mention of Lyme Disease. I am currently ready to lock horns with my physicians on this subject, in terms of my undefinable symptoms for the following reasons......
1. I had a lot of exposure to the out doors, in Utah/ Idaho, had a petichial rash and was really sick around age 9. This region is know for Rocky Mountain Spotted fever.
2. I have now had 2 lyme tesst with equivical positives and confirmed negative with Westernblot- no bands detected .
First Test: age 12 (1987) I had an equivical positive value of 98 (ELISA ref range less than 0.90- negative, 0.90 -1.25 Equivical, > 1.25 positive). My test was sent out for confirmation and no bands were detected.
Second Test: Two months ago, not sure what test was used for the initial draw, lab value stated ABNORMAL , sent out for confirmation by Western blot. Westernblot confirmed NEG- No bands detected.
I really don't feel like I am unreasonable in asking that this historical lab vs my new lab results be looked at bit more closely, as I have also recently been diagnosed with a brain lesion that in appearance is that of classic MS, but is undefinable due to only having one lesion. I am told that MS diagnosis cant be made based on a single lesion confirmed by an MRI, so now, I am now being followed by an MS clinic for min of a year.
I have had SOOOOOO many serology tests, to date, and scheduled for more.....UUUGGGHH!
All of my test have been normal thus far with the exception of a few freak incidents, CPK has gone out of range a few time for no reason, mild abnormal values associated with the Lupus anti- coag test but not enough to indicate clinical significance. ASO (streptosilin) was high a few times early 2000's , and I must mention that I never get strep even when I am exposed.
I am considered a major PIA by some medical practitioners, due to my diligent researching. However, I have learned to request the Physician to review my information and to be informed about my history before seeing me as I want to be sure that we will be a good fit. This worked out in my quest for a new neurologist, my new Neuro is awesome, I refer to her as my Scholar Doctor.....
Anyway, if your interested in hearing more let me know!
Namaste!
I meant the 3 evil Ps!
I can't even use a typo as an excuse for this one!
Niko
I can't even use a typo as an excuse for this one!
Niko
Hi creolemoon74.
My,my! I read your profile and you do sound a lot like...me!
less of course the health issues and autoimmune-is there really such a thing? ( Mine have been dealt with my way, long time ago)
I often wonder if it is a "convenient label" for something medical science hasn't figured out yet or perhaps doesn't want to officially make public.
There are always dark forces in every day life. Take for example OHIO,
a very unfriendly Lyme Disease state. I have spoken and communicated
with many individuals from OHIO either Lyme Disease sufferers or LD
suspected. No LLMDs,no proper testing, no recognition from any medical state authority.
People have to go to Pennsylvania for treatment from OHIO!! 150-200
miles away. That's what I'm talking about! A chap from OHIO -a medhelp member- just managed last week to find an LLMD there who was accepting new patients. As if the entire state of OHIO cannot get its act together and take care of matters like this. Canada, an entire nation and when it comes to Lyme Disease or any serious chronic A/I and or degenerative disease has no specialists! No LLMDs and the few still practicing are doing so, incognito. Patients use pseudo-names to protect their LLMDs identities. Doesn't this sound like the Dark Ages?
You may be a victim of the politics,policies and protocol -the 3 evil Cs-
imposed by IDSA. And no I am not an alarmist, if I come across this way.
I'm your typical easy going guy, who happens to be knowledgeable enough to understand how most things work in our society.
My challenging past, in a great many ways, has been a blessing in disguise. It forced me to dig deep into my soul and spirit and replace the darkness with light. And when this happens, EVERYTHING changes!
Can anybody do this? That is a Million dollar question.
Can you? Probably yes. How do I know? It's a feeling, an energy.
If interested, send me details regarding your situation.
Take care,
Niko
My,my! I read your profile and you do sound a lot like...me!
less of course the health issues and autoimmune-is there really such a thing? ( Mine have been dealt with my way, long time ago)
I often wonder if it is a "convenient label" for something medical science hasn't figured out yet or perhaps doesn't want to officially make public.
There are always dark forces in every day life. Take for example OHIO,
a very unfriendly Lyme Disease state. I have spoken and communicated
with many individuals from OHIO either Lyme Disease sufferers or LD
suspected. No LLMDs,no proper testing, no recognition from any medical state authority.
People have to go to Pennsylvania for treatment from OHIO!! 150-200
miles away. That's what I'm talking about! A chap from OHIO -a medhelp member- just managed last week to find an LLMD there who was accepting new patients. As if the entire state of OHIO cannot get its act together and take care of matters like this. Canada, an entire nation and when it comes to Lyme Disease or any serious chronic A/I and or degenerative disease has no specialists! No LLMDs and the few still practicing are doing so, incognito. Patients use pseudo-names to protect their LLMDs identities. Doesn't this sound like the Dark Ages?
You may be a victim of the politics,policies and protocol -the 3 evil Cs-
imposed by IDSA. And no I am not an alarmist, if I come across this way.
I'm your typical easy going guy, who happens to be knowledgeable enough to understand how most things work in our society.
My challenging past, in a great many ways, has been a blessing in disguise. It forced me to dig deep into my soul and spirit and replace the darkness with light. And when this happens, EVERYTHING changes!
Can anybody do this? That is a Million dollar question.
Can you? Probably yes. How do I know? It's a feeling, an energy.
If interested, send me details regarding your situation.
Take care,
Niko
You may want to ask this question again in the doctor expert forum. I personally had to diagnose both my two autoimmune diseases from online research after decades of doctors and misdiagnosis. If you do have an autoimmune disease, there are around 80 or so to choose from. Check out the Wikipedia article - Autoimmune Disease.
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