Aa
RA, Lupus or MCTD?
Had recent positive RA factor and 1:1 titer. I suffer from non swollen joint pain, lower pack and neck pain, inflammatory chest pain, non itching rash across my chest that gets more pronounced in the sun and when I am feeling bad, my joints pop and crunch (almost all of them), chronic fatigue, dry mouth and dry eyes, frequent and various infections (UTIs, Sinus, Ear, BVD ect), swollen glands, numbness in the tips of my toes, hammertoes and I have a red/purple ring on my left wrist (that no one has been able to tell me what it is - have had it about 7 years and initially it was very red and inflamed, itchy with a white center - I thought it went away leaving a scar, but it reflairs if I try to take the antibiotic doxycycline) I have had severe ear pain / issues and severe dental problems and acne all my life...severe pain behind my right eye and vision issues that come and go with sinus pain/pressure - I have 3 brothers and a sister - sister is diagnosed with mixed connective tissue disease with sceraderma being her most pronounced issue, one brother has epilepsy, severe joint pain and stiffness and joints that pop and grind like mine - he tested positive ANA and lupus specific, but the Rheumatologist that I took him to wouldn't even work him up - I too have had a positive ANA many years ago - but nothing specific showed - now my ANA is showing negative and RA factor and titer positive.....I am so confused....am I more likely to have RA, lupus, MCTD or none of the above....between the 3 of us, we hit on almost every autoimmune disease symptoms and tests......I am a RN and thought I had a basic understanding of autoimmune diseases - but I am totally confused and it doesn't help that none of us are seeing the same doctors...any insight at all would be most welcome.
Gin try Tumeric.
It is an Indian spice,and AMAZING for any type of inflammation. I live in Atlanta so buy it in the spice section of our armer's market cuz they make it fresh. I travel to Florida a lot, and people hunt me down like I am a drug dealer because it has helped my friends with lupus, arthritis, helped my sister's neck itching with ms...
Just take about 1/2-1 teaspoon in about 8ounces of water and you will be amazed. I just take a funnel and pour in my water bottle, shake and drink.
Just gave to a friend with lupus about 2weeks ago. She was in the bed feeling bad, feet swollen. In a couple of hours, she was outside edging the lawn and stringing up lights. Gave some to my cousin, just 2days ago( she as lupus also),she said she didn't feel so achy a couple hours later. Let me know...***@****
It is an Indian spice,and AMAZING for any type of inflammation. I live in Atlanta so buy it in the spice section of our armer's market cuz they make it fresh. I travel to Florida a lot, and people hunt me down like I am a drug dealer because it has helped my friends with lupus, arthritis, helped my sister's neck itching with ms...
Just take about 1/2-1 teaspoon in about 8ounces of water and you will be amazed. I just take a funnel and pour in my water bottle, shake and drink.
Just gave to a friend with lupus about 2weeks ago. She was in the bed feeling bad, feet swollen. In a couple of hours, she was outside edging the lawn and stringing up lights. Gave some to my cousin, just 2days ago( she as lupus also),she said she didn't feel so achy a couple hours later. Let me know...***@****
Gin try Tumeric.
It is an Indian spice,and AMAZING for any type of inflammation. I live in Atlanta so buy it in the spice section of our armer's market cuz they make it fresh. I travel to Florida a lot, and people hunt me down like I am a drug dealer because it has helped my friends with lupus, arthritis, helped my sister's neck itching with ms...
Just take about 1/2-1 teaspoon in about 8ounces of water and you will be amazed. I just take a funnel and pour in my water bottle, shake and drink.
Just gave to a friend with lupus about 2weeks ago. She was in the bed feeling bad, feet swollen. In a couple of hours, she was outside edging the lawn and stringing up lights. Gave some to my cousin, just 2days ago( she as lupus also),she said she didn't feel so achy a couple hours later. Let me know...***@****
It is an Indian spice,and AMAZING for any type of inflammation. I live in Atlanta so buy it in the spice section of our armer's market cuz they make it fresh. I travel to Florida a lot, and people hunt me down like I am a drug dealer because it has helped my friends with lupus, arthritis, helped my sister's neck itching with ms...
Just take about 1/2-1 teaspoon in about 8ounces of water and you will be amazed. I just take a funnel and pour in my water bottle, shake and drink.
Just gave to a friend with lupus about 2weeks ago. She was in the bed feeling bad, feet swollen. In a couple of hours, she was outside edging the lawn and stringing up lights. Gave some to my cousin, just 2days ago( she as lupus also),she said she didn't feel so achy a couple hours later. Let me know...***@****
Question of the Day (but pertaining to one's entire Life!) and you must ask
yourself this:
"If I Were Truly Being Me, Who, Where, What, When and How Would I Be?
Just listened yesterday to Dr. Dain Heer for almost 2 hours and this is one of the questions he asked one of the callers.
I love this stuff!
Cheers.
Niko
yourself this:
"If I Were Truly Being Me, Who, Where, What, When and How Would I Be?
Just listened yesterday to Dr. Dain Heer for almost 2 hours and this is one of the questions he asked one of the callers.
I love this stuff!
Cheers.
Niko
Nikko - muchly appreciate the info and agree most whole heartedly - I will check out the breathing web site, but LOL as nurse and former smoker (still have O2 sat of 99- 100%) of 28 years - I teach and encourage deep breathing exercises to all my patients to improve diaphragm strength and expand lung capacity...to increase your abilities to cough ect...you are literally preaching to the choir! Suffered from long term yeast infect as a child - mum was kind of clueless - the very unfortunate NEED for frequent antibiotic treatment make the diflucan a necessity from time to time - fungus may be in my gut - but I draw the line certain places lol - I take probiotics (big advocate) and I am probably the only nurse I know that makes a point to teach my patient to breath (telling them it's like a free gym membership - no equipment, no fees, no sweating - you can do it anytime and anyplace - just have to remember to do it) and thank you for reminding me - it is so easy to "let yourself go" when you are sick....definitely going to check out the coconut oil...the tropical natives of the countries that use large amounts of coconuts in their diet are always so beautiful and healthy looking. I went to the ER and got cipro - the doct thought it was more of a AI flair than an infection - but antibiotics allways make me feel better (until the next time :( ) I have set up a appointment with a new primary MD - wish me luck - going to keep my old one too - I like him because he is more into listening than telling - things like: I would like a MRI on my hip, I need some azithromycin, I would like my vitamin D level checked and I don't like opioids and new medications (unless I have bronchitis or pneumonia - haven't had either in about 2-3 years :) - but then I much have tussinex - codeine cough syrup - I hope my stomach holds up to the nsaids or I will be crippled - I don't know how much damage has gone on in my joints, but they all started crunching after I took Celebrex that they gave me in the ER - it worked like 2- 21/2 days - absolutely no pain in any joints - like heaven - forgot what feeling normal felt like - too bad I was still down from the bladder infection - I would have been supergirl :) I feel I am slightly doomed - my inner gut (full of what ever crappy pathogens are trying to kill me) tells me my intestines are slightly "fried" from low dose radiation exposure.... ah something new to research "effects of radiation on digestive system" my thyroid is spent and I really need to go have a few spots biopsied to see if that will shed any light on the - lol, was going to call it an "illness" but, it is basically my life - when I look back it seems like I am fighting a loosing battle....short periods of remission where I feel good and bursts of illnesses - it seems the battles have gotten much more serious and much more frequent....how ironic - I think my body has waged war against me - wish I had been nicer to it when I was younger :) My family is a little strange - had a 2nd cousin die at 16 of a very rare leukemia, father and his first cousin died from Hodgkins, grandmother had no right hip bone left when she died of ovarian cancer - she never received any medical care until she was almost dead - undiagnosed arthritic problem - grandfather had severe RA and my cousin has an very rare disease called lambs disease - I need to research that too - going back to the fact that the surgeon told me my 'insides are stuck together - never seen anything like that before" My brother and my sister suffer almost exactly the same symptoms so odd - as far as I know, the other 2 do not have any issues (both are brothers) - sorry rambling - thinking out-typing :) I had no idea that so many AI symptoms could hit all at one - so hard - so fast
Lupus rash due to sensitivity to sun exposure has more to do with low cellular thyroid function than Lupus itself to my opinion.
I'll explain (and this may also explain, at least in part, lupus development)
UV light damages the outermost skin cells (keratinocytes), which normally get removed when dead (apoptosis)and therefore when this debris is simply floating around and not processed because of low thyroid function ( low thyroid function affects directly the cells ability to perform their functions be it maintenance or repair or anything else) , it causes not only further inflammation-beyond the inflammation caused by the sunburn or other reason- but also triggers an interaction of the cellular waste with the immune system, which basically constitutes an immune response against the body's own cell materials.
This is auto-immunity my dear and it affects the most vulnerable parts of the body first.
So let me sum up my suspicion of what is really going on here.
Certain imbalances stemming from earlier events, lifestyle factors, personal constitution, genetic susceptibility,unexpressed emotions etc. have resulted in chronic stress.
Chronic stress in turn has resulted in lowered immunity AND impaired
cellular thyroid function (among other consequences). There is a distinct co-relation.
Prolonged Low cellular thyroid function (despite normal labs/serum test results), affects all organs and body systems
in direct proportion to the strength or rather to the weakness of their cells,
or their predisposition to inflammation and damage.
(serious organ involvement in this state without resolve, usually have dire consequences and commonly resulting in the onset of Lupus or other chronic A/I like condition).
Underlying pathogenic infections in dormant state, opportunistic in nature,
get activated by certain "triggering" mechanisms, and start growing and spreading in this lowered immune state, easily, further contributing to the
already diseased state of the body, with new symptoms appearing in various parts of the body (systemic condition).
Prolonged elevated cortisol levels can no longer be sustained and they start to drop.
As I mentioned earlier, " cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us even more susceptible to pathogens like bacteria, yeast, and parasites".
I understand the need for diflucan, however, diflucan is mainly fungastatic
and NOT fungicidal. Also it is not a wide spectrum anti-fungal and in the absence of a wet prep, a yeast culture on the wet prep and a test to verify
its sensitivity to diflucan, another course of this med for recurring yeast issues is likely NOT the answer!
A wider spectrum anti-fungal and more effective remedy is ...Coconut Oil. Extra virgin coconut oil, topical and ingested!!!
It also happens to be antimicrobial, antiviral & antiparasitic!
Well suited for a germophobic person, I would say, lol!
Visit the coconut research center website for more details or ask me any questions about it, People in my area, consider me as guru in this field and often stop me wherever I am to ask me questions, lol!
And while you`re at it, look into "Oil Pulling" with coconut oil, a superior way of removing toxins and bacteria from your oral cavity (instead of slowly seeping into your body)
Your oral hygiene and dental health will never be the same after a couple weeks of this swishing regiment.
Your sinus issues may have to do with inappropriate breathing patterns.
The challenge with verifying incorrect breathing patterns, is that the moment you become aware of this possibility, your breathing improves, before you even have the opportunity to check it.
So the best thing left to do is to actually do it!!!
Go to the normal breathing website and learn how to breathe properly!
I'm not kidding you! Most people, SPECIALLY people who suffer from any kind of illness or stress have very poor breathing patterns.
It basically involves learning some simple conscious breathing exercises, repeating them frequently until the brain picks up the pattern automatically (subconsciously) and it's a home run after!
I'm very thankful to Dr. Buteyko, who developed this and I have been free
of most of my sinus problems, since the time I learnt and applied his breathing techniques.
Perhaps, I will look into getting certified this year as an instructor of the Buteyko Breathing Method.
Stored stress, yes, indeed. I deal often with this, through clients-not my own,
lol! Reiki, Energy Psychotherapy & Hypnotherapy are 3 modalities that I use and besides meditation, I really can't think of any other better method of dealing with "stored" stress or any other type of stress.
I'm glad the weather is getting warmer down there and that you're felling better. (Did you know that cortisol levels to a degree, co-relate to the barometric pressure fluctuations, so when the barometric pressure is higher
-not only the weather is improving but also the way you feel because of increased cortisol in your body).
Here's it's been deep chill and snow. Brrrr!!!
But In a couple weeks, I'll be in Mexico on the Pacific side, where the weather is always sunny and warm this time of the year.
"Una cerveza, pero muy fría por favor!"
Feel Good, Live, Love and Laugh!
Love & Light
Niko
I'll explain (and this may also explain, at least in part, lupus development)
UV light damages the outermost skin cells (keratinocytes), which normally get removed when dead (apoptosis)and therefore when this debris is simply floating around and not processed because of low thyroid function ( low thyroid function affects directly the cells ability to perform their functions be it maintenance or repair or anything else) , it causes not only further inflammation-beyond the inflammation caused by the sunburn or other reason- but also triggers an interaction of the cellular waste with the immune system, which basically constitutes an immune response against the body's own cell materials.
This is auto-immunity my dear and it affects the most vulnerable parts of the body first.
So let me sum up my suspicion of what is really going on here.
Certain imbalances stemming from earlier events, lifestyle factors, personal constitution, genetic susceptibility,unexpressed emotions etc. have resulted in chronic stress.
Chronic stress in turn has resulted in lowered immunity AND impaired
cellular thyroid function (among other consequences). There is a distinct co-relation.
Prolonged Low cellular thyroid function (despite normal labs/serum test results), affects all organs and body systems
in direct proportion to the strength or rather to the weakness of their cells,
or their predisposition to inflammation and damage.
(serious organ involvement in this state without resolve, usually have dire consequences and commonly resulting in the onset of Lupus or other chronic A/I like condition).
Underlying pathogenic infections in dormant state, opportunistic in nature,
get activated by certain "triggering" mechanisms, and start growing and spreading in this lowered immune state, easily, further contributing to the
already diseased state of the body, with new symptoms appearing in various parts of the body (systemic condition).
Prolonged elevated cortisol levels can no longer be sustained and they start to drop.
As I mentioned earlier, " cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us even more susceptible to pathogens like bacteria, yeast, and parasites".
I understand the need for diflucan, however, diflucan is mainly fungastatic
and NOT fungicidal. Also it is not a wide spectrum anti-fungal and in the absence of a wet prep, a yeast culture on the wet prep and a test to verify
its sensitivity to diflucan, another course of this med for recurring yeast issues is likely NOT the answer!
A wider spectrum anti-fungal and more effective remedy is ...Coconut Oil. Extra virgin coconut oil, topical and ingested!!!
It also happens to be antimicrobial, antiviral & antiparasitic!
Well suited for a germophobic person, I would say, lol!
Visit the coconut research center website for more details or ask me any questions about it, People in my area, consider me as guru in this field and often stop me wherever I am to ask me questions, lol!
And while you`re at it, look into "Oil Pulling" with coconut oil, a superior way of removing toxins and bacteria from your oral cavity (instead of slowly seeping into your body)
Your oral hygiene and dental health will never be the same after a couple weeks of this swishing regiment.
Your sinus issues may have to do with inappropriate breathing patterns.
The challenge with verifying incorrect breathing patterns, is that the moment you become aware of this possibility, your breathing improves, before you even have the opportunity to check it.
So the best thing left to do is to actually do it!!!
Go to the normal breathing website and learn how to breathe properly!
I'm not kidding you! Most people, SPECIALLY people who suffer from any kind of illness or stress have very poor breathing patterns.
It basically involves learning some simple conscious breathing exercises, repeating them frequently until the brain picks up the pattern automatically (subconsciously) and it's a home run after!
I'm very thankful to Dr. Buteyko, who developed this and I have been free
of most of my sinus problems, since the time I learnt and applied his breathing techniques.
Perhaps, I will look into getting certified this year as an instructor of the Buteyko Breathing Method.
Stored stress, yes, indeed. I deal often with this, through clients-not my own,
lol! Reiki, Energy Psychotherapy & Hypnotherapy are 3 modalities that I use and besides meditation, I really can't think of any other better method of dealing with "stored" stress or any other type of stress.
I'm glad the weather is getting warmer down there and that you're felling better. (Did you know that cortisol levels to a degree, co-relate to the barometric pressure fluctuations, so when the barometric pressure is higher
-not only the weather is improving but also the way you feel because of increased cortisol in your body).
Here's it's been deep chill and snow. Brrrr!!!
But In a couple weeks, I'll be in Mexico on the Pacific side, where the weather is always sunny and warm this time of the year.
"Una cerveza, pero muy fría por favor!"
Feel Good, Live, Love and Laugh!
Love & Light
Niko
The fact that I am a nurse and well, despite being a germaphobe, I exist a large amount of my time surrounded by bacteria.....As every antibiotic that I ingest causes a female type adverse reaction....I frequent diflucan - I don't think yeast is my issue, although, like any other cruddy living condition, I am prone...I would tend to believe that some type of sinus acquired infection may be a likeliness....but how do you find out what the mysterious hiding microchondrial infection is again? Um do I need to reread again LOL? All 3 of us siblings suffering from auto immune also suffer from chronic sinus issues - 2/3 of us have atually resorted to sinus surgery.....we all have the lupus rash that causes no problems (other than unsightliness) but get brighter in the sun - yet the sun makes us all feel better....What came first? The chicken or the egg? Because I ACTUALLY FEEL the INFLAMATION in my sinuses - I can not decide if it is the result of the disease or if it was the medium were a "super bug" was introduced - the thing is - we all had some of our symptoms for a long time. Still running a fever tonight :( - Starting to feel a bit better - the weather is warming back up...
Although I now resemble Marry-Ellen, I grew up as Elizabeth....I tend to store stress deep inside my soul...yes this is what is tearing me up - I know it. Oh well - off to do something I really don't want to - wish me luck.........
Mary-Ellen? I'm not that familiar with the Walton's.
I only watched it a few times.
And I mentioned her because I though she was gorgeous! lol!
She also became a nurse, divorced and had one child. It kinda fits.
Hmm, Daddy's girl for sure and then a huge void, which not only could not
be filled by mom, but perhaps contributed negatively to your relationship with her after his passing, creating an even a greater schism between the two of you then.
Here's a reference which I may also use in another post in the A/I Community:
Dr. William Osler's "Principles and Practice of Medicine" in 1892,
suggested that R.A has "in all probability, a nervous origin".
He was referring to psychoemotional stress, in today's terminology.
He noted the association of R.A with "shock, worry and grief".
One of the greatest clinical teachers of any day, of any country!
His textbook, very widely used for many decades, underwent 16 editions!!!
Your Angel, just like an oasis in the dessert, offered you " fresh spring water" and " cool shade" in your overheated and almost out of control life, a means of protecting you and helping you find a better Path.
Stay close to her in Spirit and Soul, and I trust that you respect her
choices, even if they may not be what you might have had envisioned,
when she was growing up. Sometimes, it is hard to just let go, but deep inside us, we know it is the right thing to do as parents.
I have a daughter too!
Many of your issues today probably have to do with
undealt stuff from your teen years on and your stressful life today is only making things worse.
A strategy to deal with all this is in order.
Love & Light
Niko
I only watched it a few times.
And I mentioned her because I though she was gorgeous! lol!
She also became a nurse, divorced and had one child. It kinda fits.
Hmm, Daddy's girl for sure and then a huge void, which not only could not
be filled by mom, but perhaps contributed negatively to your relationship with her after his passing, creating an even a greater schism between the two of you then.
Here's a reference which I may also use in another post in the A/I Community:
Dr. William Osler's "Principles and Practice of Medicine" in 1892,
suggested that R.A has "in all probability, a nervous origin".
He was referring to psychoemotional stress, in today's terminology.
He noted the association of R.A with "shock, worry and grief".
One of the greatest clinical teachers of any day, of any country!
His textbook, very widely used for many decades, underwent 16 editions!!!
Your Angel, just like an oasis in the dessert, offered you " fresh spring water" and " cool shade" in your overheated and almost out of control life, a means of protecting you and helping you find a better Path.
Stay close to her in Spirit and Soul, and I trust that you respect her
choices, even if they may not be what you might have had envisioned,
when she was growing up. Sometimes, it is hard to just let go, but deep inside us, we know it is the right thing to do as parents.
I have a daughter too!
Many of your issues today probably have to do with
undealt stuff from your teen years on and your stressful life today is only making things worse.
A strategy to deal with all this is in order.
Love & Light
Niko
Wow - you do have a way of making people feel better - I led a life of a princess compared to that - well not in all respects, but I basically grew up like the Waltons....r u familiar with the show? Can u guess who I would be? I grew up poor, with very ethical parents and unconditional love - sounds fine except watching my very sweet and saintlike father suffering on a daily basis as he slowly wasted away - then the crash of the most severe psychological pain that I could not explain to anyone at the age of 16 when my father's illness was too much for him to fight any more. My mother is healthy - alive and remarried - I once had some very real issues that kept me from being as close to her as I would be, but when I grew up and looked at her life - all was much more understandable and we are much closer now. The pain of loosing my father at such a delicate age contributed to my early life poor decisions - alcohol and worse - and those things didn't really help me make any better decisions for a while - I had my child at 19 and she saved me from that path...my angel - I wish I could make her small again - I miss her so - she lives hundreds and hundreds of miles away.
Well for starters you are not alone.
All we need in life is just one person for support, and for the time being
even if this is a distance arrangement, I can be that one person.
You strike me as person who feels bound to your "kismet", a victim of your destiny, yet there's a part of you that KNOWS and BELIEVES that you have control of your ship and you're willing to do whatever it takes to weather the storm successfully so you can resume your voyage and return to the safety of your harbor, where peace, calm and joy are awaiting for you.
My being here, is a purposeful one.
My life has been full of meaningful events-dare I say mostly challenging-
nonetheless very enlightening, since I was blessed with the wisdom to
make that choice.
Two near death experiences in two different parts of the world, following horrific accidents, which contributed deeply to my inner make-up
and a very challenging childhood, which resulted in a serious undiagnosed debilitating condition, and enduring this condition mainly on my own!
My mom was very ill, suffering from prolonged grief after 5 deaths in the family within 18 months, both sets of my grandparents and her younger sister, on top of my dad facing military court and taken away indefinitely for a bureaucratic error from their part!!!,heart problems, depression, addicted to valium and a sick baby of 12 months. I was 10 years old and in charge!
If this is not a way to grow up fast and do what you have to do to survive,
I don't know what is.
One day, I found myself at the cardiologist's office, for my severe mostly chest and sometimes back stabbing -like pains, which caused me fear of dying from them, so I would try to stay awake in bed at night in my attempt to will death away! Plus many more unexplained symptoms!!!!
He was a kind man, did not prescribe any meds because I was too young.
He had training as a psychologist as well, handed me a stack of printed papers to read and didn't accept any money either. They were various suggestions, breathing exercises, affirmations, and other things that I had to do every day! Which I did and they sure helped, specially with the fear. The pains and other symptoms continued, however, but I prayed daily and later I learnt to meditate- thanks to my good Aussie friend Michael, who was like a guru and helped me turn my health and my life around.
Empathy, Love, Caring, Wisdom, become the medications for my wellness, as I immersed myself in studying anything in Holistic Health,
Nutrition, Psychology, Spirituality, Consciousness and honestly, I never looked back.
Somehow, I attracted in my Path both Wise Teachers and poor suffering Souls who were desperate for a kind word, a smile, a piece of bread, anything at all. And I received great lessons from both sides!
There must be a reason that so many people around me have been diagnosed with A/I type of conditions, like Lupus, Fibromyalgia, Hashimoto's- I have many Japanese friends, many of them where staying at our house on work or student exchange programs to improve their english and Japanese is really not that difficult! lol!- and since I had suffered something similar to MS or Lymes- at the time the A/I concept had not been popularized- and came out of it on my own unscathed, I figured I needed to share some of this wisdom with people who suffer from such conditions. So here I am.
Anyway,these are some parts from my "crazy" life, but I wouldn't change a single thing, if I were redoing it.
L8R!
Love & Light
Niko
PS. Please tell me about your mom and I promise to read your last post again, if you promise to read mine again! lol!
And I do understand...
All we need in life is just one person for support, and for the time being
even if this is a distance arrangement, I can be that one person.
You strike me as person who feels bound to your "kismet", a victim of your destiny, yet there's a part of you that KNOWS and BELIEVES that you have control of your ship and you're willing to do whatever it takes to weather the storm successfully so you can resume your voyage and return to the safety of your harbor, where peace, calm and joy are awaiting for you.
My being here, is a purposeful one.
My life has been full of meaningful events-dare I say mostly challenging-
nonetheless very enlightening, since I was blessed with the wisdom to
make that choice.
Two near death experiences in two different parts of the world, following horrific accidents, which contributed deeply to my inner make-up
and a very challenging childhood, which resulted in a serious undiagnosed debilitating condition, and enduring this condition mainly on my own!
My mom was very ill, suffering from prolonged grief after 5 deaths in the family within 18 months, both sets of my grandparents and her younger sister, on top of my dad facing military court and taken away indefinitely for a bureaucratic error from their part!!!,heart problems, depression, addicted to valium and a sick baby of 12 months. I was 10 years old and in charge!
If this is not a way to grow up fast and do what you have to do to survive,
I don't know what is.
One day, I found myself at the cardiologist's office, for my severe mostly chest and sometimes back stabbing -like pains, which caused me fear of dying from them, so I would try to stay awake in bed at night in my attempt to will death away! Plus many more unexplained symptoms!!!!
He was a kind man, did not prescribe any meds because I was too young.
He had training as a psychologist as well, handed me a stack of printed papers to read and didn't accept any money either. They were various suggestions, breathing exercises, affirmations, and other things that I had to do every day! Which I did and they sure helped, specially with the fear. The pains and other symptoms continued, however, but I prayed daily and later I learnt to meditate- thanks to my good Aussie friend Michael, who was like a guru and helped me turn my health and my life around.
Empathy, Love, Caring, Wisdom, become the medications for my wellness, as I immersed myself in studying anything in Holistic Health,
Nutrition, Psychology, Spirituality, Consciousness and honestly, I never looked back.
Somehow, I attracted in my Path both Wise Teachers and poor suffering Souls who were desperate for a kind word, a smile, a piece of bread, anything at all. And I received great lessons from both sides!
There must be a reason that so many people around me have been diagnosed with A/I type of conditions, like Lupus, Fibromyalgia, Hashimoto's- I have many Japanese friends, many of them where staying at our house on work or student exchange programs to improve their english and Japanese is really not that difficult! lol!- and since I had suffered something similar to MS or Lymes- at the time the A/I concept had not been popularized- and came out of it on my own unscathed, I figured I needed to share some of this wisdom with people who suffer from such conditions. So here I am.
Anyway,these are some parts from my "crazy" life, but I wouldn't change a single thing, if I were redoing it.
L8R!
Love & Light
Niko
PS. Please tell me about your mom and I promise to read your last post again, if you promise to read mine again! lol!
And I do understand...
I take levothyroxine - my THS is usually 7-8. I think I have the H thyroid autoimmune disease (can't spell it - my Japanese not that great) I'm fearing HL at this time - lump behind my ear...I have had every type of infection you can imagine: cellulitis as a child stepped on rusty nail; broken front tooth abscessed as a child, chronic UTI, mono, chronic sinus infection, had pink eye inside my eyeball once, had a tubal pregnancy rupture and the surgeon told my "you insides are all stuck together, never seen that before" - he friggen retired a week later - had a wisdom tooth pulled - it was connected to the molar next to it - I woke up from anesthesia to hear the dentist telling his assistant "40 years of dentistry and never had that happen before" - my 2 teeth grew together - not at the roots - my soft teeth "melted" together. Not only did my father die from HL - his 1st cousin also died from it...to say it runs in the family....my grandmother on my fathers side had severe arthritis (don't know what kind) - mothers father had severe RA with the knotted fingers....Stress in my life LOL - I have known that stress makes me sick (flair or whatever) since I was a child - I try very hard to avoid it - I have been a peacemaker as long as I can remember - always trying to make everyone around me happy to create a stress free environment - guess that's why I am alone now - that got old after 40 + years - always giving, never getting what I needed - being very scientific minded, I wonder if possible second hand exposure to high doses of chemo and/or radiation have caused some of my issues. Where on earth could I possibly have come into contact with radiation? My father was diagnosed with cancer around the same time I was conceived - I an 100% sure that my Dad is my father and according to my family, I shouldn't have been able to be conceived as my father was just starting rad and chemo at that time...he was given 6 mths to live when I was born - he died a few months before I turned 17 years old....I didn't take it well to say the least, but that's another story....but according to my brothers, he had received so much cobalt radiation that ants would run away from him - I was very much a Daddy's girl for reasons that again are another long sad story...I actually remember climbing over the front seat of a car to the back seat into his arms when I was still in diapers - he had just got out of the hospital and had been gone for some time....crap my life is pitiful when I actually type it out like this....
On a brighter note - aches and pains are better today except hip, back and neck which are also better but still bothersome - still running a low grade temp, still have nasty post nasal gtt and have added right ear pain. oh speaking of forgot about chronic ear infections - they started again as a child when I was walking past a tree in the late fall and a twig went into my ear mid step and broke off causing severe ear pain - followed by a crippling ear infection - I also expect to get hit by lightning anytime now....one of the few oddities I am missing....of coarse after having a tubal pregnancy, female infections started - I am so tired of looking healthy and feeling like hell and having people treat me like a hypochondriac....now lets add in that being a nurse since 2006, I am surrounding myself with the most nasty, resistant bacterium around - yeah me - very smart of me....
I very much appreciate the shoulder, I am very curious about your back ground? Your story that has you here as the guru of this complicated illness forum? And I do so enjoy speaking with intelligent, empathetic and open minded people. I am so frustrated because I feel alone - not trusting doctors with complex and debilitating issues - the 5 minutes they allow you just doesn't cut it and having to pay co pays for each doctor and each type of doctor you see and not getting any real results while trying to keep your life together really stinks...great to have someone understanding to chat with. Hope to hear back soon.
On a brighter note - aches and pains are better today except hip, back and neck which are also better but still bothersome - still running a low grade temp, still have nasty post nasal gtt and have added right ear pain. oh speaking of forgot about chronic ear infections - they started again as a child when I was walking past a tree in the late fall and a twig went into my ear mid step and broke off causing severe ear pain - followed by a crippling ear infection - I also expect to get hit by lightning anytime now....one of the few oddities I am missing....of coarse after having a tubal pregnancy, female infections started - I am so tired of looking healthy and feeling like hell and having people treat me like a hypochondriac....now lets add in that being a nurse since 2006, I am surrounding myself with the most nasty, resistant bacterium around - yeah me - very smart of me....
I very much appreciate the shoulder, I am very curious about your back ground? Your story that has you here as the guru of this complicated illness forum? And I do so enjoy speaking with intelligent, empathetic and open minded people. I am so frustrated because I feel alone - not trusting doctors with complex and debilitating issues - the 5 minutes they allow you just doesn't cut it and having to pay co pays for each doctor and each type of doctor you see and not getting any real results while trying to keep your life together really stinks...great to have someone understanding to chat with. Hope to hear back soon.
Good Morning gingin,
This couldn't wait!!!
When I got up-this happens to me ALL THE TIME!- this strong thought about your "case" came to me.
Your mitochondria, your energy production centers in your cells, influence your well-being, your aging processes, your cellular healing, your gene expression for good or bad health, including the elimination of old cells AND replacing them with new cells.
Please be patient and follow my train of thought.
One of the main Thyroid functions is cellular energy production regulation, something like the thermostat in the house
Thyroid resistance is( just like insulin resistance), when thyroid hormones are produced and show on your serum tests as normal (for TSH, T3 & T4),
yet for a number of various factors cannot be biologically active IN the cells!
Thyroid resistance or Hypothyroid type 2.
Low adrenal function at SUB-CLINICAL levels over time due to chronically elevated stress levels, will result in Low Thyroid function, easier determined by testing Free T3, Free T4 & Reverse T3.
In the absence of underlying infections, Dr. Barnes Basal Temperature Test, can help you gauge thyroid and/or adrenal function.
In this case Thyroid supplementation is very delicate, whether NDT or synthetic, as your body is in a catabolic state of low energy, an adrenal/ hormonal system survival and repair default mechanism.
So any "normal" thyroid treatment, at such time, goes against this.
I can give you the exact science behind it, if interested.
Prolonged elevated cortisol levels cannot be sustained indefinitely and the possibility of very low cortisol levels is there.
In such a case, cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.
Most of this, if not all , takes place at the sub-clinical level or outside the scope of "established" Endocrinology and its conventional testing.
If you want to explore this further, please let me know, as I can send you
details, screening questionnaires and links for tests.
Questions: How was your mother's health when you were growing up and later on as well?
Anything that stands out, any serious or chronic health issues or any traumatic events?
Have you ruled out Candida (for yourself)?
Around the time of your dad's diagnosis of H.L and on, how did this impact your emotional and physical health?
How about your other 2 siblings, who you mentioned in your post?
(There are things that can still be done to help either one of them).
Your A/I hypothesis is becoming more clear to me now.
L8R!
Niko
This couldn't wait!!!
When I got up-this happens to me ALL THE TIME!- this strong thought about your "case" came to me.
Your mitochondria, your energy production centers in your cells, influence your well-being, your aging processes, your cellular healing, your gene expression for good or bad health, including the elimination of old cells AND replacing them with new cells.
Please be patient and follow my train of thought.
One of the main Thyroid functions is cellular energy production regulation, something like the thermostat in the house
Thyroid resistance is( just like insulin resistance), when thyroid hormones are produced and show on your serum tests as normal (for TSH, T3 & T4),
yet for a number of various factors cannot be biologically active IN the cells!
Thyroid resistance or Hypothyroid type 2.
Low adrenal function at SUB-CLINICAL levels over time due to chronically elevated stress levels, will result in Low Thyroid function, easier determined by testing Free T3, Free T4 & Reverse T3.
In the absence of underlying infections, Dr. Barnes Basal Temperature Test, can help you gauge thyroid and/or adrenal function.
In this case Thyroid supplementation is very delicate, whether NDT or synthetic, as your body is in a catabolic state of low energy, an adrenal/ hormonal system survival and repair default mechanism.
So any "normal" thyroid treatment, at such time, goes against this.
I can give you the exact science behind it, if interested.
Prolonged elevated cortisol levels cannot be sustained indefinitely and the possibility of very low cortisol levels is there.
In such a case, cortisol regulates the immune cells in our gut so when cortisol is depleted those cells become dysregulated, making us more susceptible to pathogens like bacteria, yeast, and parasites.
Most of this, if not all , takes place at the sub-clinical level or outside the scope of "established" Endocrinology and its conventional testing.
If you want to explore this further, please let me know, as I can send you
details, screening questionnaires and links for tests.
Questions: How was your mother's health when you were growing up and later on as well?
Anything that stands out, any serious or chronic health issues or any traumatic events?
Have you ruled out Candida (for yourself)?
Around the time of your dad's diagnosis of H.L and on, how did this impact your emotional and physical health?
How about your other 2 siblings, who you mentioned in your post?
(There are things that can still be done to help either one of them).
Your A/I hypothesis is becoming more clear to me now.
L8R!
Niko
Hi again gingin7024.
Well , it looks like you have found an online shoulder to lean on- through me- and please free to do so without any reservations.
I'm extremely patient, understanding & not easily bothered by anything.
My constitution has been molded and influenced by certain significant events from early on in my life and one day we'll "talk" about this, if our communication continues.
OK, back to your story.
You are carrying a heavy weight my dear, for now.
But somehow, I'm getting a good vibe. Things will work out for you.
First some good news (but not always). The 1:1 titre indicates the absence of A/I disease- I know you mentioned positive but in titres up to 1:160 are considered negative as they are of little diagnostic value
( but ANA is not diagnostic on its own & not enough to rule out either).
Your suspected genetic susceptibility, including your siblings, can lead to the onset of certain conditions , but only when other triggering factors or causative cofactors-mainly infectious conditions- are present.
Why is the latter good news? Simple (but not easy!):
Verify the trigger(s)/ cofactor(s), eliminate it(them) and you are on the road to recovery provided that there has been no serious organ involvement.
I have an entire comprehensive protocol for this, which seems like a lot of work, however, well worth the effort of going through many layers, as it offers a great possibility for remission or at least significant improvement.
You may have to take off your RN cap occasionally, since this may take you
to uncharted medical territory.
So here's my first premise:
The primary cause(in general, regardless of genetic predisposition) of most cases of arthritis are infectious conditions.
I know what most people think when I mention this.
It is however a known fact- i have many references- that infectious conditions are underlying many diseases like various forms of Arthritis, RA OA, Psoriatic Arthritis, AS also Fibromyalgia and others.
The real issue is that it is very difficult to find an active infection present in
each case so doctors are not keen on making such a determination,
when they cannot find & identify the infection.
I'm referring to chronic low grade infections, not acute and systemic ones.
There's a bacterium involved in the cause of arthritis, named after arthritis!
It's called Mycoplasma Arthriditis.
Proteus, HPV, Klebsiella,Candida,Hepatitis B, Lyme disease, Salmonella,
Streptococcus and many other infectious bacterial, viral and fungal organisms are implicated in the cause of arthritis and other conditions.
Again, if you need references I have plenty research papers, studies and articles.
One connection, which is based in the focal theory of infection, where an infection in a particular place of the body (focal infection) spreads to another part of the body causing a secondary infection, is the oral/mouth infection and arthritis. You mentioned "DECAYING TEETH"! BINGO!!!
Can you get your hands on Dr. Weston Price's Dental Infections, Volume I and Volume II (La Mesa: CA Price-Pottenger Nutrition Foundation)?
It's the Holy Grail of the oral infections/arthritic conditions link, with over 1100 pages of extremely detailed information and very well documented studies. You may want to do a search for this and the first result is the
educate-yourself website, which gives a summary/review of Dr. Price's work.
Please post again with your comments and any questions you may have.
I'm more than happy to offer you as much as I can and also by doing this,
I'm kind of getting a little organised,lol!
I'm also a bit of a scatter brain at times, I know a lot, I study a lot, I research a lot and I talk a lot and I have notes all over the my office about everything and anything and a thousand books in no particular order, but I can find things rather easily.
Hey, one more thing. You are who you are and I sense you are a beautiful person, but your life is like the runaway train!!!
One of my main fields of interest is the human potential and one of the biggest obstacles in realizing our potential is... you probably guessed it: STRESS!
I understand that your stress is "justified" because of your circumstances,
work schedule, health condition, money etc.
There are some simple fundamental ways to shift this.
Shift Happens!
TTYL
Abundant Love and Light
Niko
Well , it looks like you have found an online shoulder to lean on- through me- and please free to do so without any reservations.
I'm extremely patient, understanding & not easily bothered by anything.
My constitution has been molded and influenced by certain significant events from early on in my life and one day we'll "talk" about this, if our communication continues.
OK, back to your story.
You are carrying a heavy weight my dear, for now.
But somehow, I'm getting a good vibe. Things will work out for you.
First some good news (but not always). The 1:1 titre indicates the absence of A/I disease- I know you mentioned positive but in titres up to 1:160 are considered negative as they are of little diagnostic value
( but ANA is not diagnostic on its own & not enough to rule out either).
Your suspected genetic susceptibility, including your siblings, can lead to the onset of certain conditions , but only when other triggering factors or causative cofactors-mainly infectious conditions- are present.
Why is the latter good news? Simple (but not easy!):
Verify the trigger(s)/ cofactor(s), eliminate it(them) and you are on the road to recovery provided that there has been no serious organ involvement.
I have an entire comprehensive protocol for this, which seems like a lot of work, however, well worth the effort of going through many layers, as it offers a great possibility for remission or at least significant improvement.
You may have to take off your RN cap occasionally, since this may take you
to uncharted medical territory.
So here's my first premise:
The primary cause(in general, regardless of genetic predisposition) of most cases of arthritis are infectious conditions.
I know what most people think when I mention this.
It is however a known fact- i have many references- that infectious conditions are underlying many diseases like various forms of Arthritis, RA OA, Psoriatic Arthritis, AS also Fibromyalgia and others.
The real issue is that it is very difficult to find an active infection present in
each case so doctors are not keen on making such a determination,
when they cannot find & identify the infection.
I'm referring to chronic low grade infections, not acute and systemic ones.
There's a bacterium involved in the cause of arthritis, named after arthritis!
It's called Mycoplasma Arthriditis.
Proteus, HPV, Klebsiella,Candida,Hepatitis B, Lyme disease, Salmonella,
Streptococcus and many other infectious bacterial, viral and fungal organisms are implicated in the cause of arthritis and other conditions.
Again, if you need references I have plenty research papers, studies and articles.
One connection, which is based in the focal theory of infection, where an infection in a particular place of the body (focal infection) spreads to another part of the body causing a secondary infection, is the oral/mouth infection and arthritis. You mentioned "DECAYING TEETH"! BINGO!!!
Can you get your hands on Dr. Weston Price's Dental Infections, Volume I and Volume II (La Mesa: CA Price-Pottenger Nutrition Foundation)?
It's the Holy Grail of the oral infections/arthritic conditions link, with over 1100 pages of extremely detailed information and very well documented studies. You may want to do a search for this and the first result is the
educate-yourself website, which gives a summary/review of Dr. Price's work.
Please post again with your comments and any questions you may have.
I'm more than happy to offer you as much as I can and also by doing this,
I'm kind of getting a little organised,lol!
I'm also a bit of a scatter brain at times, I know a lot, I study a lot, I research a lot and I talk a lot and I have notes all over the my office about everything and anything and a thousand books in no particular order, but I can find things rather easily.
Hey, one more thing. You are who you are and I sense you are a beautiful person, but your life is like the runaway train!!!
One of my main fields of interest is the human potential and one of the biggest obstacles in realizing our potential is... you probably guessed it: STRESS!
I understand that your stress is "justified" because of your circumstances,
work schedule, health condition, money etc.
There are some simple fundamental ways to shift this.
Shift Happens!
TTYL
Abundant Love and Light
Niko
Hi LightSeeker - nice to meet you (as we communicate in this age -lol). There was not number on the lab report that I received just marked as abnormal "positive" - I hope to have more specific data soon as I went to my very first Rheumatologist appointment on 1-2-14. Great way to start the new year....I have been researching autoimmune disorders for the past 2 or so years - attempting to help my older brother and sister, fully knowing that I had all the early signs myself - within the last year, I have been getting worse very fast - I thought I would be okay for another decade - but now I don't know if I can last another year (being able to work that is) - I am a RN - I admitted 2 patients to the hospital last week, very ill, both had RA and had just started taking the newest med to knock out their immune system - I am very skeptical of doctors - being a nurse, I have known great ones and ones that I would not allow to treat my hamster....I am not a very lucky person to say the least - I cried like a baby when I got the lab results -confirming what I already knew - more pain and disfigurement in my future - awesome - more isolation as I don't want to burden my friends and family - I am anti opioid - I have had surgeries in the past and had short term treatments with pain medications and I know how addictive they are and how many other problems they create - my ibuprofen is not doing the trick anymore - just got a script for tramadol for flairs - went to a chiropractor and I was told "you must be in horrible pain" - I am tough, I have already suffered more than most people do in a lifetime - my job is pure agony - 121/2 - 15 hours on my feet on concrete floors with no breaks - I eat at a computer when I am charting and usually interrupted by a call light or realizing I need to give a medication or change an iv fluid or something - I work 3 days in a row like this - but I don't know what to do...I left my non-supportive husband because his selfish and antisocial attitudes caused me stress which made me flair and so here I am a blond 43 year old nurse that looks healthy, but feels like they are 90- working harder than anyone should have to (sorry for rambling - it feels so good just to let some crap out) I started a journal - just a few days ago and still seem to be in the mode - I am going through the grieving process and the lab result blew denial away and I jumped into anger with a vengeance and - the anger stems from being young (ish?) and working so hard to have a nice life - but struggling so long along the way - so many infections, so much bad luck and bad timing along the way - yes, I made many mistakes in the beginning of my life - but have had more hardship than many - I still have student loans to pay from nursing school - no home and no savings - I live week to week with my paycheck - in pain and alone and angry...giving up hope of any good in this world - at least for me, anyways...oh sorry - now you see why I am avoiding friends and family - what I really want to know, what flipping illness do my brother and sister and I have? Is it RA, Lupus, MCTD or overlap connective tissue disease - what tests should we have done - my sister who is oldest has been seeing Rheumatologist for over 2 years - they don't even know what to classify her as....I am the only one that has had a pos RA - I also had a pos ANA as do both of them - no subset on mine, brother showed lupus and don't recall what my sister told me. We all have a "rash" across our chests that gets worse in sun, we all have severe arthritic pain - have inflamed tendons, decaying teeth and sinus problems - but then we have different issues too - brother was diagnosed with epilepsy and can't read or write, sister has severely dry, white flakey skin problems, brain fog issues (doctors are checking her for dementia at age 54 - news flash: dementia does not wax and ween!) I have had chronic infections - of just about every type you can imagine - I have read of links between autoimmune and lymphoma - my father passed away of Hodgkin lymphoma in his early 50s - I was 16 years old - I have a reoccurring knot behind my right ear - much like the one he had on his upper jaw bone below his left ear - I asked a doctor to get a biopsy once - they treated me like a was a hypochondriac - my friends have told me I was addicted to antibiotics - when I feel bad, it doesn't go away until I get my hands on the correct antibiotic - inflammation is usually preceding the illness - especially the sinuses - I don't watch the news or sad shows because crying will cause severe inflammatory response followed by severe pressure and pain and illness that will not resolve until I take a round of antibiotics - I am tired of fighting this already - I supported my brother for nearly 2 years while fighting to get him on disability - he cannot read to fill out a form, cannot drive himself to an appointment and was in so much pain, he could barely walk - his plan was to steal (something no one in my family has every done) from a store and get caught to go to jail so he could eat, get his seizure meds and a warm bed - my family have all worked hard, done the honest, honorable thing and this is our fate? To be treated like we are lazy, hypochondriacs? Sorry anger slipping out again...
I hope I haven't scared you away - I need to communicate with other people - I am not a sheep, I don't believe things just because someone says it (including doctors) - but I am open minded and very logical - I should have been a scientist - I like to hear what others experience and know and use that information to try new ways to solve problems and I have some big problems...Being a nurse, frequently I can help people with common medical problems - Do you know what the 1:1 titer means? I can't find any reference for RA titer - is it bad or mild? I'm not sure what things they are comparing....Thanks for um reading? Hope to hear from you soon and anyone else that has any experience or information....Thanks!
I hope I haven't scared you away - I need to communicate with other people - I am not a sheep, I don't believe things just because someone says it (including doctors) - but I am open minded and very logical - I should have been a scientist - I like to hear what others experience and know and use that information to try new ways to solve problems and I have some big problems...Being a nurse, frequently I can help people with common medical problems - Do you know what the 1:1 titer means? I can't find any reference for RA titer - is it bad or mild? I'm not sure what things they are comparing....Thanks for um reading? Hope to hear from you soon and anyone else that has any experience or information....Thanks!
Hi gingin7024 and welcome to the forum.
I will reply later in detail, as I'm off to work now.
Can you confirm the 1:1 titer and what was your Rheumatoid factor?
gtg!
Cheers!
Niko
I will reply later in detail, as I'm off to work now.
Can you confirm the 1:1 titer and what was your Rheumatoid factor?
gtg!
Cheers!
Niko
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