-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yeah,!, as tools go Ali,,,,?LOL! I checked it out and signed up as a "friend" of a mentally Ill person....LOL>......
How ya been Ali? I'm doing OK....but awaiting 6month upheaval of symptoms...
If it's really bad I know the doggone IM I used in May and June... did'nt get my "S-Load" down as far as I had hoped....
Especially cuz of the mixup with the meds and my hitting the Medicare script G A P !
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Sorry to leave you hanging sweetie.
Talk about symptom upheaval?...I just had to do too much in too little time & ended up being taken out by symptoms.
I went to LLMD yesterday in severe pain that had been building over at least three days (can't really remember when it started but know it was really bad for that long).
On the drive back, the pain spread into a headache which was full-blown migraine by the time I got home.
LLMD is finally changing meds (IMO, should have at last visit) but pharmacy won't have new Rx until Monday.
Couldn't think of running around to different pharmacies to see if anyone had Suprax or 600mg Zith on hand, not with my head feeling that way.
Came home, tried to think of what to do, but couldn't. Had to avoid light & sound. I had asked the pharmacist & Rifampin would still be in my system, so I couldn't try to take anything yet.
I put in a call to LLMD to find out if I should still stop the Rifampin/Mino, since I couldn't start the others, they told me to call back if he didn't respond in about 45 minutes & they'd page him again.
It hurt too much & I couldn't wait around for him to call back so I called DH, told him DD was at a friends, I had a migraine, he was on his own for dinner & took the phone (on the off chance that LLMD would call) & went to bed to pray for sleep.
LLMD never called & I woke up around 1:30am, still in full pain, when DD accidentally landed on my arm. She said DH had told her she could sleep with me. I couldn't stay there because DH had fallen asleep with the TV on in the other room & even her breathing was making my head hurt worse.
I made my weay to turn off TV, got some tea & went into the dark, quiet guest room. Then knocked over my tea, when reaching for a tissue. After cleaning it up & managing somehow not to throw up from the motion, I managed to get back to sleep.
I just woke up (to the sound of the TV again) & feel like I've been hit by a bus, backed over & the run over again & dragged for miles.
Are you sorry you asked how I was doing? LOL
What happened with your meds (mix up?) & what's the deal with the Medicare script gap? I don't really know much about medicare yet.
I guess I should have elaborated on the tool. I used it to email my House Representative about HR 1179 (not sure I've got the number right, but you know which one I mean. ), instead of whatever they wanted me to write about.
It was very easy to just put in my address, select "other" & have the form come up to write him a note. It was all in one nice, neat place.
Hmmm, maybe I should go back & look at the actual site. Sometimes my mind goes off on tangents faster than I can keep up with what I'm thinking.
I don't always realize that I can't expect other people to know what I'm thinking when I can't even keep up. Sometimes when I read things back that I've written, & see people's responses I'm amazed at how they manage to figure out what the heck was on my mind.
I guess that comes with being able to read/write Lymese.
I still have to respond to the PM thread. I haven't forgotten, I'm just having trouble pulling the swimming words out of my head into intelligible sentences right now. It's been a bad week for me.
I also keep having power failures which are making me lose everything that I've been keeping open to respond to. JCP&L is definitely not helping me maintain focus right now.
I do intend to try to get back to the PM, after I let everyone in General (that I also left hanging) know where I am.
I just hate it when I can't keep up. It's so frustrating!
Thanks for being there for me Tony. The Lord works in mysterious ways that you should have responded to my PM, just as I was going off the deep end & needed a shoulder to cry on.
You must be an angel!
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
OMGoodness. That makes me furious. NAMI
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Pinelady: OMGoodness. That makes me furious. NAMI
OK- I'm confused. What exactly is making you "furious"? The fact that I'm using their tool to make it easier for us to contact our Congressional Reps regarding the Lyme bills, the letters "NAMI" or the fact that there's an advocacy association for those who have mental illnesses?
Perhaps I should have pointed DIRECTLY to each individual link?
I really can't imagine how my topic is infuriating.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
We are not Mentally Ill. Are We?
I like the links I just don't like being included in Mental Illness. I have been sick with lyme not crazy. Of course being told your just depressed for years could lead to mental illness. They are lucky I did not go postal....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
We were't included. I did a search for Lyme & came up with our bills. The default was set to something else.
We're ill & some have Neurological involvement. There are times when peoples minds are adversely impacted by this disease.
I do believe that it is unfair to refer to someone with a mental illness as "crazy". There are many types of mental illness.
Clinical Depression is considered a "mental illness". Bipolar Disorder, Obsessive-Compulsive Disorder, Panic attacks - all considered "mental illness".
We know that there are bacteria causing these issues in the Lyme-infected that can be treated with antibiotics.
Neurological Lyme is not the "mental illness" that IDSA following physician's might claim we have when they tell us there's nothing "medically" wrong.
THEY might say that we have Somatoform Disorder (Hypochodria), which is one type of mental illness I've never heard realistically being caused by Lyme.
There are many diagnosed with a variety of "Mental Illnesses" where Lyme may be a completely and mistakenly unsuspected cause. I find that quite sad.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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