Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Seriously, the brain just went to nonprocessing on 100 mg mino x 2.
Also woke up with stiff fingers, this weird feeling like my eyes were too far back in my head, a little bit of balance issues and the feeling that I couldn't stand up too long.
I had a regular doctors appointment today and gave up and turned around because I really could not drive the 5 miles there. I was on the verge of a panic attack and came home to slug a propranolol and a valium.
I did everything I could think of too, AK Gold, burbur and pinella, A/C, lemon juice.
Still felt like somebody passed me a hit of acid.
It's a herx but holy hell I don't think I could do another day like this unless I had NOTHING to do for about four weeks.
Anybody advise I should "push though"this to victory?
Or ramp right on back down? I'm voting down.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Been treating here over 7 years, and I know all too well the quandry you are in. Early in my treatment I would stop treatment if pain became too severe. I wish I had pushed through those now, because I believe I missed opportunities for real progress.
Are you just starting treatment?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Well I guess I started treatment a year ago. I didn't want to have Lyme, I wanted to have anything else.
I've spent the past eight months waiting for some conventional allopathic doctor to explain what happened to me but not only do they have no explanation - they also have the look about them that registers both confusion and fear.
No doctor can tell me why I have no neutrophils left, why my white blood counts are failing, why I shake in bed at night, why I lost the use of my left hand and why the hell it came back.
Or why I sweat all the time, why I had orange water instead of regular BMs for seven straight months, why is my heart rate over 100 lying down and why I wake up in sheets of sweat, trembling, why the deep muscles that inform my neck ache, why my head bobs when I turn it, why was it that one day six months ago my right shoulder started jumping up and down on its own while I buttered a piece of toast.
They don't know.
But I am pretty sure I know.
I can be patient with my illness. But it is a hell of a challenge to be patient to get treatment, since I am pretty sure I know what that is too.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
If we had cancer, it would be so much easier. Loads of sympathy, kind and caring doctors, and TREATMENT. Even leprosy would be easier. They'd send us to that leper colony in HAWAII!!
I am 67 years old. I started sweating - day sweats- when I was 17 and never stopped.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Yep.
About five years ago I was embroiled in the usual American questions about health insurance -- whether I even really needed it. I mean I had no plans to get sick. I was perfectly healthy and I could not *imagine* what could possibly happen that would need more than a single 200 dollar doctor's visit every year.
However, many internal arguments later, resentfully giving in to caution and paranoia, I ended up paying for my insurance no matter what. Took thousands and thousands of dollars' worth of tests this year.
Turns out the thing wrong with me is not covered or even recognized by insurance. I could have taken all those premiums, copays, phone calls and correspondences and thrown them right down the toilet.
It took me that long to pay attention to my own intuition. I wake up every morning thinking -- are you effing serious, world?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I know exactly how horrible Lyme disease is, but to act as if cancer is a walk in the park, is just complete nonsense. There are patients who have to go through the same things as we do: misdiagnosis, unkind/uncaring doctors, delayed treatment, being a guinea pig, terrible side effects, high costs, no reimbursement, loneliness and social isolation and so on. There may be better care for most, but some have to fight a battle that is just as tough as ours. And comparing diseases (or patients) to determine who suffers the most and deserves the most sympathy is a bad idea anyway.
Posts: 109 | From The Netherlands | Registered: May 2014
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I agree with you Notti.
It all sucks.
However in the US Cancer is a governmental/societal imperative and, in the US, Lyme disease does not exist. Socially we're really not Allowed to be sick as Lyme patients whereas with a Cancer diagnoses the sea parts and everybody knows how serious and lifechanging it is.
I have something in common with cancer patients. I don't need social support as much as I need meds that work.
But...the social support is nice.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
That's true. Once cancer is properly diagnosed there is recognition. However, when a cancer patient is treated and declared cured but still has lingering symptoms afterwards, (s)he gets to hear the same explanation as we do: it's all in your head.
What you say is right. We all need the best treatment possible.
Posts: 109 | From The Netherlands | Registered: May 2014
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