Post by casa11 on Nov 9, 2017 16:52:07 GMT
Ok, I began an overly long 'history ' and after much work, lost it! Haha!
I was already feeling it was TOO long so I guess it disappeared for a reason
I will try a shorter version. I have had Lyme & co a long time - possibly since birth - definitely since childhood.
I was born with major issues- severe hip problem & constant ear infection s in both ears. I was onantibiotics constantly- whenever I went off the ear aches came back with a vengeance. I had 2 sets of tubes- nothing helped. My mother says I never slept for longer than 20 minutes & even that was rare.( the insomnias never changed)
That later progressed into constant sinus / throat ENT stuff- & ' allergies' - lots of swOllen glands, severe headaches etc. tonsils & adenoids removed - no relief. Migraines, neck /jaw pain, tooth grinding, constant dizziness...and the Pain!!!!
As soon as I could communicate i expressed great pain - esp in my legs. This eventually developed in to constant subluxations, dislocations, and overall excessively flexible ( and fragile ) joints- everywhere!
I went to many 'good' specialists & hospitals & received a long list of 'diagnosis') including ( but not limited to ) growing pains, too sensitive to pain, attention seeking, bi-polar, depression, making it up, all in your head, hypermobility joint Syndrome , and finally ( after both shoulders had been fully dislocated for 2 years & even surgery was ineffective- ) I was told I had Ehlers Danlos Syndrome.
They wanted to fuse both shoulders, and I got my medical records where I learned a lot of interesting things- first of all, I'd been officially diagnosed w/ EDS 2 years prior- but never told. Therefore I had been put ona long string of phych drugs to treat the 'all in my head ' stuff...
The results were disastrous, but that's another story.
I also learned that I had been given adult doses of NSAIDS since early childhood- one of them being 600mg ibuprofen 2x a day at age 6.... none of it ever helped.
But by the time I was 10-11 I'd also been diagnosed with IBS or Chroans. It took me many years to figure out on my own that it was really from a life time of NSAID overuse. I guess some of it could've been associated with Lyme & co also, don't know . It eventually ( over many years)eased.
I regularly passed out, had 'hot flashes ' ,puberty was AWFUL! very ill- definitely not typical puberty stuff. Every time I got my period it appeared I was coming down with a virus- plus I'd be literally rolling on the ground in pain - often crying( or screaming b/c it hurt so BAD!)
Oddly, my breasts never grew past the first prepubescent stage. Ever. I've often wondered about this- as -let's just say, it's definitely NOT genetic!
I developed' stretch marks' all over back, thighs,breasts. I was told this was part of EDS.
When I was 17 I first read about Lyme disease. I begged my doc to test me - I said ' I have or have had almost every single symptom!"
She said no, you have EDS& migraines, and insomnia & IBS & anxiety/panic disorder ' bi-polar & ADHD & on & on.
By then I was having seizure-like episodes as well as the regular passing out & more. Several times coworkers called an ambulance only for me to refuse treatment when they arrived. I soon got them 'trained' to stop calling 911! Thankfully!
Since then I have literally asked every doctor I had , (Except one) to test me for Lyme. All refused.
To make a long story short, many of those diagnoses have dropped away over the years, only to add new ones- chronic pain syndrome, fibromyalgia, unknown autoimmune & hormone disfunctionEtc.
I've had a lot of bizarre skin stuff & systemic allergic reactions. Began having numbness/tingling /pain in hands & feet & especially beginning behind my right shoulder blade & progressing through the entire arm etc. tons of upper quadrant issues, including a lot of jaw stuff. Dental stuff.
In 2006 I had shingles. I was going through a stressful time... never considered anything else. Over the next few years I had several odd illnesses - was eating all raw/ organic ' had a lot of detox type stuff... my health was declining, but slowly. I could still fuction( with pain etc) also severe foot pain, and several EM rashes that I didn't realize were EMs.
In 2011, my boyfriend died. He was my only human support system... my family refused to let me grieve , and My living situation also became unstable & I began losing my beloved bulldogs ( my heart & my work) I thought I was going to be homeless soon & began giving them away , etc. ( my father owns the house I live in & he was threatening to kick me out. He also began freaking out at me every time I came home , or when I stayed home for 'too long' ( in his opinion) so that I had to park up the street & sneak in the back door.) there were neighbor issues feeding the situation with my father, but he chose her over me...) more stress !!!!
I won't go into all the gory details... but the following years were filled with loss, grief, stress. Etc. I had shingles at least 3 more times, and I believe a re activation of the EBV resulting in several bouts of mono.
I attributed many symptoms to grief/stress etc. - major weight loss, increased malaise, irritability, increased ADHD symptoms, major fatigue/ both physicall & mental- I often really was unable to move for long periods of time. my periods stopped & my hair stopped growing as soon as Tommy died. It was so easy to blame it all on stress & grief & the increases in pain on the progressive nature of EDS. ( and just getting older...)
Then about 4 1/2 years ago the weight gain began- all my symptoms were increasing . A little over a year ago I got bells palsey. I was literally bed ridden much of the time, and if I was able to get up I was so dizzy & weak I had to hold onto one object after another to get around. All the balance & gait issues were bad. Totally intolerant to heat. And absolutely no ability to regulate my body temp.
If I managed to drive somewhere I'd have to sit in the car for hours before I could drag myself inside, then do the same when I got back to the car , before heading home. Then again in the driveway st the house. It was like the mental & physical act of driving took so much out of me I was actually paralyzed for awhile.
I had awful kidney pain& symptoms of kidney issues. Visual disturbances. Tinnitus.
I had known something serious was going on, but was too sick & lacking in resources to get help. I began oregano oil 2+ yrears ago hoping for some kind of relief. I also had discovered ( the hard way) that dental work nearly kills me, so I used it for my teeth ALOT.
I went to a different pain doc, as I'd lost my insurance- he saw the bells palsey & butterfly rash , as well as edema & weight gain & all the other symptoms I explained. He ordered a Lyme test. ( ironically, is seen him 6 years prior - asking for a Lyme test & he refused...)
I went home & got even sicker. Totally bedridden . Couldn't even go out for the blood work. I was doing the seizure-like things again -a lot.
So weak & heavy & so much pain! Shaking all the time, racing heart, inability to handle stress, etc. anxiety began creeping up. Also the feeling of not really being where I was. I know there's a word for it but I forget- haha... also brain fog!
I started a ketogenic diet In hopes of healing my hormones., adrenals, thyroid & brain. Within several months I got my period back. It was awful at first ( just like when I used to have it, but it's getting much less so now.) .
It was 7-8 months after beginning the keto diet that I was finally able to go get the Lyme test. It came back positive. The diet change was what got me so I wasn't bedridden anymore. It was a huge improvement, though I still was very ill!
I honestly believe the reason I got the positive result was that I had been taking a kidney support supplement that had a TON of TCM herbs , including Astragalus it. As well as doing the Oregano oil& cinnamon & clove oils ( because I originally thought I had a blood sugar issue going on too). Or maybe I was just lucky, l don't know.
But the diagnosis was a gift to me. ( not the disease itself, or all the co's which I have as well) but the diagnosis....
I'll edit later to add all my co's & other fun stuff!
I began herbal treatment right away...samento, burbur/pinella -took me a long time to get up to 9 drops samento! I've just started slowly adding Cumunda ( 4drops) .
I've been forced ( by family who's helping w/ $) to take doxy. I'm on my 5th day. I also tried it before for maybe a week - awful!
I still do the EO's
kratom for pain has been a lifesaver & allowed me to not have to deal with a doc specifically for pain - plus it works better/as well as pharmaceutical pain killers- so why not?
I'm currently taking ALOT of other supplements- I can try to list them all. But know I'll forget some... I'll edit this & list em later I'll also list my detox later...
I'm also doing homeopathics for coinfections,( I've got lots, yippie!) viruses ( got several) and to help my body detox from the obscene amount of agricultural chemicals that are in my body. Believe it or not, the homeopathics do help - for me.
Ok, if you've read this far, thanks for caring! I know it was a lot! And I swear , that was the short version! Haha! I'll add the rest later...
I was already feeling it was TOO long so I guess it disappeared for a reason
I will try a shorter version. I have had Lyme & co a long time - possibly since birth - definitely since childhood.
I was born with major issues- severe hip problem & constant ear infection s in both ears. I was onantibiotics constantly- whenever I went off the ear aches came back with a vengeance. I had 2 sets of tubes- nothing helped. My mother says I never slept for longer than 20 minutes & even that was rare.( the insomnias never changed)
That later progressed into constant sinus / throat ENT stuff- & ' allergies' - lots of swOllen glands, severe headaches etc. tonsils & adenoids removed - no relief. Migraines, neck /jaw pain, tooth grinding, constant dizziness...and the Pain!!!!
As soon as I could communicate i expressed great pain - esp in my legs. This eventually developed in to constant subluxations, dislocations, and overall excessively flexible ( and fragile ) joints- everywhere!
I went to many 'good' specialists & hospitals & received a long list of 'diagnosis') including ( but not limited to ) growing pains, too sensitive to pain, attention seeking, bi-polar, depression, making it up, all in your head, hypermobility joint Syndrome , and finally ( after both shoulders had been fully dislocated for 2 years & even surgery was ineffective- ) I was told I had Ehlers Danlos Syndrome.
They wanted to fuse both shoulders, and I got my medical records where I learned a lot of interesting things- first of all, I'd been officially diagnosed w/ EDS 2 years prior- but never told. Therefore I had been put ona long string of phych drugs to treat the 'all in my head ' stuff...
The results were disastrous, but that's another story.
I also learned that I had been given adult doses of NSAIDS since early childhood- one of them being 600mg ibuprofen 2x a day at age 6.... none of it ever helped.
But by the time I was 10-11 I'd also been diagnosed with IBS or Chroans. It took me many years to figure out on my own that it was really from a life time of NSAID overuse. I guess some of it could've been associated with Lyme & co also, don't know . It eventually ( over many years)eased.
I regularly passed out, had 'hot flashes ' ,puberty was AWFUL! very ill- definitely not typical puberty stuff. Every time I got my period it appeared I was coming down with a virus- plus I'd be literally rolling on the ground in pain - often crying( or screaming b/c it hurt so BAD!)
Oddly, my breasts never grew past the first prepubescent stage. Ever. I've often wondered about this- as -let's just say, it's definitely NOT genetic!
I developed' stretch marks' all over back, thighs,breasts. I was told this was part of EDS.
When I was 17 I first read about Lyme disease. I begged my doc to test me - I said ' I have or have had almost every single symptom!"
She said no, you have EDS& migraines, and insomnia & IBS & anxiety/panic disorder ' bi-polar & ADHD & on & on.
By then I was having seizure-like episodes as well as the regular passing out & more. Several times coworkers called an ambulance only for me to refuse treatment when they arrived. I soon got them 'trained' to stop calling 911! Thankfully!
Since then I have literally asked every doctor I had , (Except one) to test me for Lyme. All refused.
To make a long story short, many of those diagnoses have dropped away over the years, only to add new ones- chronic pain syndrome, fibromyalgia, unknown autoimmune & hormone disfunctionEtc.
I've had a lot of bizarre skin stuff & systemic allergic reactions. Began having numbness/tingling /pain in hands & feet & especially beginning behind my right shoulder blade & progressing through the entire arm etc. tons of upper quadrant issues, including a lot of jaw stuff. Dental stuff.
In 2006 I had shingles. I was going through a stressful time... never considered anything else. Over the next few years I had several odd illnesses - was eating all raw/ organic ' had a lot of detox type stuff... my health was declining, but slowly. I could still fuction( with pain etc) also severe foot pain, and several EM rashes that I didn't realize were EMs.
In 2011, my boyfriend died. He was my only human support system... my family refused to let me grieve , and My living situation also became unstable & I began losing my beloved bulldogs ( my heart & my work) I thought I was going to be homeless soon & began giving them away , etc. ( my father owns the house I live in & he was threatening to kick me out. He also began freaking out at me every time I came home , or when I stayed home for 'too long' ( in his opinion) so that I had to park up the street & sneak in the back door.) there were neighbor issues feeding the situation with my father, but he chose her over me...) more stress !!!!
I won't go into all the gory details... but the following years were filled with loss, grief, stress. Etc. I had shingles at least 3 more times, and I believe a re activation of the EBV resulting in several bouts of mono.
I attributed many symptoms to grief/stress etc. - major weight loss, increased malaise, irritability, increased ADHD symptoms, major fatigue/ both physicall & mental- I often really was unable to move for long periods of time. my periods stopped & my hair stopped growing as soon as Tommy died. It was so easy to blame it all on stress & grief & the increases in pain on the progressive nature of EDS. ( and just getting older...)
Then about 4 1/2 years ago the weight gain began- all my symptoms were increasing . A little over a year ago I got bells palsey. I was literally bed ridden much of the time, and if I was able to get up I was so dizzy & weak I had to hold onto one object after another to get around. All the balance & gait issues were bad. Totally intolerant to heat. And absolutely no ability to regulate my body temp.
If I managed to drive somewhere I'd have to sit in the car for hours before I could drag myself inside, then do the same when I got back to the car , before heading home. Then again in the driveway st the house. It was like the mental & physical act of driving took so much out of me I was actually paralyzed for awhile.
I had awful kidney pain& symptoms of kidney issues. Visual disturbances. Tinnitus.
I had known something serious was going on, but was too sick & lacking in resources to get help. I began oregano oil 2+ yrears ago hoping for some kind of relief. I also had discovered ( the hard way) that dental work nearly kills me, so I used it for my teeth ALOT.
I went to a different pain doc, as I'd lost my insurance- he saw the bells palsey & butterfly rash , as well as edema & weight gain & all the other symptoms I explained. He ordered a Lyme test. ( ironically, is seen him 6 years prior - asking for a Lyme test & he refused...)
I went home & got even sicker. Totally bedridden . Couldn't even go out for the blood work. I was doing the seizure-like things again -a lot.
So weak & heavy & so much pain! Shaking all the time, racing heart, inability to handle stress, etc. anxiety began creeping up. Also the feeling of not really being where I was. I know there's a word for it but I forget- haha... also brain fog!
I started a ketogenic diet In hopes of healing my hormones., adrenals, thyroid & brain. Within several months I got my period back. It was awful at first ( just like when I used to have it, but it's getting much less so now.) .
It was 7-8 months after beginning the keto diet that I was finally able to go get the Lyme test. It came back positive. The diet change was what got me so I wasn't bedridden anymore. It was a huge improvement, though I still was very ill!
I honestly believe the reason I got the positive result was that I had been taking a kidney support supplement that had a TON of TCM herbs , including Astragalus it. As well as doing the Oregano oil& cinnamon & clove oils ( because I originally thought I had a blood sugar issue going on too). Or maybe I was just lucky, l don't know.
But the diagnosis was a gift to me. ( not the disease itself, or all the co's which I have as well) but the diagnosis....
I'll edit later to add all my co's & other fun stuff!
I began herbal treatment right away...samento, burbur/pinella -took me a long time to get up to 9 drops samento! I've just started slowly adding Cumunda ( 4drops) .
I've been forced ( by family who's helping w/ $) to take doxy. I'm on my 5th day. I also tried it before for maybe a week - awful!
I still do the EO's
kratom for pain has been a lifesaver & allowed me to not have to deal with a doc specifically for pain - plus it works better/as well as pharmaceutical pain killers- so why not?
I'm currently taking ALOT of other supplements- I can try to list them all. But know I'll forget some... I'll edit this & list em later I'll also list my detox later...
I'm also doing homeopathics for coinfections,( I've got lots, yippie!) viruses ( got several) and to help my body detox from the obscene amount of agricultural chemicals that are in my body. Believe it or not, the homeopathics do help - for me.
Ok, if you've read this far, thanks for caring! I know it was a lot! And I swear , that was the short version! Haha! I'll add the rest later...