Turns out I might have an unusual case of lyme disease. So unusual that I have had trouble finding a doc that'll treat me so please start dropping some names! Since it's taken so long to discover I'll need a combo of 3 abx for 3 to 6 months, maybe longer, and if that doesn't do it then IV abx. I spent a fuck ton of money going to an infectious disease specialist but his office staff LIED to me and told me he treats this then when I got there he said he doesn't and would want to wait 6 to 8 months and do 3 or 4 repeats of the test ($200 JUST for the blood test, at a lab not covered by insurance) before he'd even consider writing me a script for abx. At that point I'll not have insurance or a job so it doesn't do me any good.

Anywhere east of the Mississippi is fair game. I need to get abx ASAP and unless I am 100% sure I can get them from a doc I'm gonna order fish pills and self medicate so I don't lose my job.

6/19/2008 10:08:37 AM

i know of doctors in CT.. too far?

6/19/2008 10:11:02 AM

ok

you need to call your insurance company and get them on the case finding someone

this is part of what they do

6/19/2008 10:11:20 AM

if it's such a rare case i would think these teaching hospitals around the area should be interested on your case

6/19/2008 10:13:33 AM

did you pick up a tick in le woods?

/french corny

6/19/2008 10:13:51 AM

I doubt they would tell me.

Problem is that the fucking worthless CDC does not admit that Lyme disease can become chronic, even though there have been in vitro studies that show exactly how this happens (B. burgdorferi forms cysts in our cells that are resistant to many drugs, hence the need for the combo of abx) and it's an accepted diagnosis and commonly treated in Europe. Here the insurance company is more likely to drop you for trying to get something treated the CDC has not officially recognized, even though if I lived in the EU I'd be getting IV abx right now. No, I'd have had this discovered and treated a year or two ago and I wouldn't be stressing because I'm about to get kicked out of grad school for being sick.

6/19/2008 10:18:24 AM

Quote :

"if it's such a rare case i would think these teaching hospitals around the area should be interested on your case"

They are more interested in documenting it than treating. Hence the 6 to 8 months of blood work before they'd consider treating me. My ELISA was negative (which happens in 40% of neuroborreliosis cases) and my IgG western blot was negative but the IgM was really positive so my immune system is somehow malfunctioning and not switching from IgM to IgG production. Considering the stupid shit my immune system has done this far it's not surprising, but it's HARD to find a doc that's a rule maker and not a rule follower. I need someone that's not afraid of trying the European treatment standards instead of the useless and outdated CDC ones.

6/19/2008 10:24:39 AM

Quote :

"but it's HARD to find a doc that's a rule maker and not a rule follower."

with malpractice insurance the way it is, im not surprised

6/19/2008 10:47:25 AM

Where's House when you need him!?

I am willing to sign any sort of waiver they put in front of me. If I can't get the pills from a doc I'm gonna take fish pills, seems like they'd want to avoid that. If I get much worse I'm gonna off myself; I've seen people have progressive neurological problems and no way in hell do I want to go through that.

6/19/2008 10:54:32 AM

:/

6/19/2008 10:59:38 AM

take a trip to Europe and go check into a hospital

6/19/2008 11:02:59 AM

I would think that somebody at Bowmen Gray or UNC would be all over this. Not having the AB's switch classes is really odd. (I'm guessing you know this, but there could be a larger underlying problem) Are you at NCSU for Grad school? I would imagine they would be a little more supportive of you, considering what is going on. I would guess the best lyme disease treatment would be further north. Good luck.

[Edited on June 19, 2008 at 11:04 AM. Reason : ...]

6/19/2008 11:03:00 AM

Yeah, I know it's really odd but it's not a false positive because there are a few negative bands. If there were all positive I'd be worried, but it's only the more lyme specific ones that are + so that makes me fairly certain it is actually lyme. My ANA is negative as well, that's the major source of false positive IgM WBs.

I went into UNC's infectious disease clinic not quite a year ago and they wouldn't run a single test on me. They only want to see you there if you have teh aids. Might try one more neurologist and experiment with the fish pills while waiting for the appt.

6/19/2008 11:12:25 AM

Duke. Duke. and Duke.

My son has a rare immune disease that only ten children a year are born with. He is treated by a team of doctors across multiple specialties at DUMC. I cannot express how pleased I have been with the level of care that he has received. The doctors there are also very concerned with listening to you and answering your questions. I have been treated like an intelligent human being with thoughts, ideas, and input into my son's care.

I just cannot see one of the doctors at DUMC not addressing your concerns in an appropriate manner.

6/19/2008 11:37:14 AM

Tried making an appt with Duke neurology before I got the lyme test results back and they wouldn't even see me, wanted me to go to rheumatology despite the neurological symptoms that responded to doxycycline.

Guess I might as well try again now that I have the lyme results in.

6/19/2008 11:49:31 AM

2 of our dogs growing up had Lyme disease. It's pretty common up in Connecticut.
(Lyme disease was discovered in Old Lyme, CT.)

Sorry to hear about the BS you're dealing with. Good luck

6/19/2008 11:54:19 AM

Quote :

"I need someone that's not afraid of trying the European treatment standards instead of the useless and outdated CDC ones."

There's a reason that americans are starting to go abroad for health care.

It's time for you to leave grad school before you're kicked out, get better, and come back.

6/19/2008 12:38:55 PM

Theres a great doctor in Charlotte that my mother went to. She was very happy with him. Wish I could remember his name for you.

She had been misdiagnosed for 15 years ... then finally they figured it out. Blamed her symptoms on fibromyalgia for all those years, when really lyme was tearing the crap out of her insides.

She went through a year of 2 hour-a-day IV treatments of antibiotics to finally rid her body of the mess. (still not sure if its all gone though, as you have to wait a while to find out).

Messy disease, so treat it as early as you can.

6/19/2008 1:35:49 PM

Probably Jemsek, only problem is that he's in SC now and really expensive. Doesn't take insurance, and since it's looking like I'm not going to have an income really soon I just can't afford that.

Called Duke neurology, still a no-go. I HATE planes, flying to europe would be very baaad but I might not have many options left.

[Edited on June 19, 2008 at 1:50 PM. Reason : ...]

6/19/2008 1:42:43 PM

flying is really safe

take a lunesta, hop on the plane and go get treatment

plus you can sight see while you're there

honestly i'd be more scared of not getting treatment

6/19/2008 3:42:05 PM

I know it's supposed to be safe, but after being on a plane with smoke in the cabin after an explosion it's not something I want to risk happening again. Maybe an international airline might not be as bad, but I'm gonna have to get really messed up to get on a plane again.

Right now my plan is to try fish antibiotics, maybe see what I can get at a hispanic store.

6/19/2008 3:59:57 PM

i thought you were that person

your life is just a train wreck

6/19/2008 4:15:36 PM

couldn't agree more

Quote :

"i thought you were that person your life is just a train wreck"

this matches your thoughts on marriage and love in general it appears

6/19/2008 4:38:12 PM

i'm sure she blames the CDC for this problem. maybe she can't find an appropriate doctor because it sounds like she thinks she is a damn expert on everything.

6/19/2008 5:05:54 PM

haha, is this the girl who wants to sue the airlines??

oh man.

its lyme disease. there is no treatment, you pretty much live with it.

deal with it.

you're kids will get it.

6/19/2008 5:17:45 PM

6/19/2008 5:31:01 PM

Quote :

"its lyme disease. there is no treatment, you pretty much live with it. "

lol, I hope you get it.

Quote :

"i'm sure she blames the CDC for this problem. maybe she can't find an appropriate doctor because it sounds like she thinks she is a damn expert on everything."

If I a doctor can't cure me and I've read more articles than them on the subject I think they should at least consider my opinion, yes. The problem is that most of them are arrogant bastards that will NEVER admit they don't know something. They'd rather watch you slowly die than admit you might have a better idea. I have nothing to lose by trying aggressive multi-antibiotic therapy and everything to gain. Since they won't give me scripts and do it the right way, I am forced to take fish antibiotics.

If you had bacterial menengitis, tests showed you had it, and the doc refused to give you antibiotics wouldn't you be pissed? Same thing. I've got an infection, positive test results, but the bastards won't give me what I need.

Fucking pieces of shit are no better than mechanics, but think they are God because they can control your access to medications.

6/19/2008 6:16:24 PM

god damn, lyme disease sucks badly

6/19/2008 6:20:24 PM

now im paranoid i got that shit

6/19/2008 11:39:32 PM

^ me too

i went camping 2 weekends ago and got a HUGE bite on my side. it didn't turn into a bulls eye looking thing but i have all the other symptoms. but now i am sick with a cache of things so who knows!

6/20/2008 12:11:50 AM

see i have not gotten sick or had symptoms. no rash, no fever, no aches, flu symptoms, and all in all i have felt good the past month since the bite. All i have at the bite is a small dot that wont go away cause i itch it. statistically speaking im fine but then again im paranoid. i want to know how you know you have that shit, minus the obvious bulls eye rash. i mean symptoms of lyme are pretty much generic cold symptoms.

6/20/2008 12:21:10 AM

I was one of the first cases of Lyme Disease diagnosed in NC sometime around 1984. The doctor who examined me went to his office and came back with some magazine with an article about Lyme Disease. I had the "bullseye" rash around the bite area as well as several mystery rashes that appeared at various points around my body. Also had inexplicable joint and muscular pain that kept me nearly bed ridden. The doctor who diagnosed me put me on medications and within a week or two I felt fine.

Then several years later after having some blood work done they told me there as a 99.x% chance I had never really had Lyme disease. I guess it had something to do with the disease or the antibodies they were expecting to find in my bloodstream. I still don't really know whether I had it or not to be honest.

Good luck lewoods...I hope you find the cure.

[Edited on June 20, 2008 at 12:23 AM. Reason : l]

6/20/2008 12:23:00 AM

Wolfy, it's more expensive but if you want to know for sure if you have lyme then send your blood to Igenex instead of where ever your doc uses. The Labcorp and Quest ELISAs are crap, both missed my lyme but the Igenex western blot found it and their IFA is waaay better than the ELISAs. It'll run you about $250 for the bloodwork and it's out of network, but way better than being told you don't have lyme and then after two years of trying to find out what's wrong you find out you do.

Also, fewer than half of people that get lyme remember seeing the bulls eye rash. I had a small raised rash, but not the classic bulls eye one.

[Edited on June 20, 2008 at 9:51 AM. Reason : ...]

6/20/2008 9:49:54 AM

http://www.cnn.com/2008/HEALTH/conditions/07/06/lymedisease.treatment/index.html

7/7/2008 12:22:56 AM

Quote :

"If I a doctor can't cure me and I've read more articles than them on the subject I think they should at least consider my opinion, yes. The problem is that most of them are arrogant bastards that will NEVER admit they don't know something. They'd rather watch you slowly die than admit you might have a better idea. I have nothing to lose by trying aggressive multi-antibiotic therapy and everything to gain. Since they won't give me scripts and do it the right way, I am forced to take fish antibiotics. If you had bacterial menengitis, tests showed you had it, and the doc refused to give you antibiotics wouldn't you be pissed? Same thing. I've got an infection, positive test results, but the bastards won't give me what I need. Fucking pieces of shit are no better than mechanics, but think they are God because they can control your access to medications."

Let me guess

you acted like a complete fucking cunt

and the doctor(s) didn't want to put up with it

and decided you're just another batshit crazy patient who's making up a disease.

7/7/2008 6:24:54 AM

haha, this is the same girl that was trying the sue the airline
message_topic.aspx?topic=519888

7/7/2008 9:17:36 AM

Quote :

"but I'm gonna have to get really messed up to get on a plane again."

you've got issues if you wont get on a plane again.. look at the f'in statistics, period.

7/7/2008 9:28:28 AM

So I wonder if she ever filed that lawsuit...

7/7/2008 9:32:13 AM

I've been too busy dealing with my health issues after the stress made them worse.

I am nice to doctors, I will listen to them until they start to worship the IDSA and CDC, which obviously shows that their skulls are empty. At that point I will mention that European studies contradict a lot of what they say, and they never have any good answers for me other than more mindless CDC worship.

A few doctors have earned my respect. I'll travel hundreds of miles to see them. The rest are more concerned with doing what they are told than helping patients.

7/7/2008 3:42:29 PM

So go to Europe then.

7/7/2008 3:44:08 PM

Once I get out of grad school, it's VERY tempting to go there, trust me.

Don't want to start all over again with grad school, otherwise I'd be on a boat over right now.

7/7/2008 3:47:08 PM

Quote :

"you're kids will get it."

you are kids will get it

7/7/2008 3:49:56 PM

I was watching Fox Business news the other day and this dude's face got half paralyzed. I was like smthg has to be wrong. Then I hit up the blog today and bam...lyme disease. Get that stuff checked out quick!

http://cody.blogs.foxbusiness.com/2008/07/05/flip-this-i-am-diagnosed-with-lyme-disease-and-its-causing-bells-palsy-on-my-face/

7/7/2008 8:51:24 PM

Yeah, good news is that a double dose of doxy is helping for now. My skin feels like it's on fire after 20 mins outside or so, but still better than not taking it.

After a month or two of that I'm gonna be crispy burnt red, gonna have to switch abx. Dose only doubled but the sun sensitivity is about 4x as bad.

Starting to feel human for the first time in years. Slow change, but at least I'm feeling better for the first time in a long while.

[Edited on July 7, 2008 at 10:25 PM. Reason : ...]

7/7/2008 10:20:51 PM

Quote :

"Starting to feel human for the first time in years."

does this mean that your posts will reflect those of a normal person now or the same batshit crazy stuff we're accustomed to now

7/8/2008 7:19:31 AM

I'll have better things to do than post on TWW. Like fixing up the motorcycle my stupid drunk neighbor totaled with his explorer or look for a new one.

If the fuckwad is reading this, I laugh at his stupidity for leaving the scene and going back to his apartment. Hit and run isn't gonna look good on your record.

I still think marriage is a meaningless pile of paperwork and having kids is for people too stupid to figure out condoms. That's not going to change.

[Edited on July 8, 2008 at 7:39 AM. Reason : ...]

7/8/2008 7:36:43 AM

better than a dui!

7/8/2008 7:38:21 AM

He's still gonna have to take it in the ass, from the gov. and his insurance.

7/8/2008 7:41:33 AM