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» LymeNet Flash » Questions and Discussion » Medical Questions » Could this be a Lyme Disease symptom?

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Author Topic: Could this be a Lyme Disease symptom?
Pinster56
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I am from Massachusetts and I pulled an attached deer tick off me a couple of days ago. Unlike other tick bites I have had before, this one is giving me a large rash that is radiating out from the bite site. It itches terribly! I read somewhere the tick has to be stuck on you for at least 48 hours before it can transmit Lyme Disease. It was only stuck on me a few hours. Also the rash does NOT have a bullseye shape. It's been a couple of days since I removed it and I feel fine. Should I be concerned? I am thinking it's just an allergic reaction, since I am allergic to bee stings. I have a pet peeve aboy hypochondriacs bothering doctors so I really don't to take up the doc's time unless it' really necessary.


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Mathias
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Did you keep the tick? If you did, get it tested ASAP. Also with tick bite and a rash (bullseye on not) any doctor worth anything would give you a 30 day supply of doxy. I would take it just to be safe, but that is just my opinion.
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Pinster56
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No I didn't keep it. I have pulled ticks off before so I didn't think much about it. It was only hours later when the rash statted that I became somewhat concerned. What is doxy? I am allergic to penicillin!
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Nancy-OH
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The rash doesn't always look like a bullseye.

I totally understand your apprehension, but GET REAL. There it absolutely nothing to be apprehensive about when it comes to Lyme.

We are talking about a devastating illness that can be nipped in the bud relatively cheaply if you treat it early.

I wish I had had that knowledge and option back in 200.

Don't wait...see the doctor and insist on antibiotics...better safe than sick.

---Nancy


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janet thomas
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photograph the rash every day with a ruler in the photo-tests take 4-6 weeks to turn positive-by then you've got entrenched Lyme-not all Lyme rashes are the classic bulls eye- you have a window of opportunity not to become one of us-those whose lives have been destroyed by Lyme-always save tick and send to igenex for testing for all tbd (tick borne disease)-not true, 48 hrs to transmit lyme, may only be a few hours-insist on at least 6 wks of doxycycline-get another dr if necessary
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Pinster56
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Well, the rash seems to be fading away...I guess I overreacted. Thanks for all your help anyway!
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Lymetoo
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quote:
Originally posted by Pinster56:
Well, the rash seems to be fading away...I guess I overreacted. Thanks for all your help anyway!

Better SAFE than VERY sorry! Get help NOW, just in case. You need to review the rashes provided in this link.

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

and YES, take pictures....faded or not

------------------
oops!
Lymetutu


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Lymetoo
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quote:
Originally posted by Pinster56:
I read somewhere the tick has to be stuck on you for at least 48 hours before it can transmit Lyme Disease.

Forgot to add....this information is incorrect and dangerous. I know LOTS of people who had ticks attached for only a few hours and they still became very ill.


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NP40
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Hey Pinster, we'd really enjoy your company around here, so it's best to ignore it, and not treat it at all. Then in about 2-3 months when all those horrible symptoms [severe pain everywhere, extreme fatigue, memory loss, facial paralysis, etc.] raise up, you can go to your Doc, who'll tell you that it's not lyme.

Then you can go to dozens of "experts" who'll diagnose you with MS, Lupus, CFS, etc., while your symptoms intensify. You'll keep insisting that "I was bitten by a tick", but this will be promptly ignored, or you may even get one or two to tell you that it's a "woman" thing, or you're "depressed".

Finally, someone will steer you towards a doc that knows something about lyme, and then you can undergo several months to even possibly years of intensive abx therapy, maybe even through a PORT line in your chest, if you're real lucky !

It'll be great fun ! You can come back to the lymeboard and tell us about your experiences with Bell's palsy, or the pain you experience that isn't relieved by meds, or how you don't have the energy, or stamina to walk upright. We can hardly wait !

You didn't really want to be bothered by daily mundane chores anyhow, and with lyme it's perfect ! You won't be able to do any of them !
See ya' in a couple of months !
We'll leave the light on for ya' !


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suej
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NP40,
Man that sounds so horrible but it's so true.

Pinster, if you're still reading, heed NP40's advice. Educate yourself, read some of the links for newbies and then get yourself to a lyme literate MD.
Sue

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PinchotGail
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Pinster,
If that rash radiated outwards and itched it sounds an awful lot like mine.......mine itched like crazy only it stayed for 2 weeks and kept me up at night.

The dr. passed it off as poison....it was reddish purplish and looked nothing like a bullseye.......

Check here for rash pictures......this is where I found mine only 5 months too late!! http://www.lyme.org/gallery/rashes.html

Gail


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liz28
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Pinster--

Alas, NP40's post is going on the easy side. There is no way you can imagine how completely off the wall Lyme recovery can be, or for that matter, how painful it is. It's like a combination of Alzheimer's, encephalitis, and multiple sclerosis, and doctors start around $350 an hour.

If you get offered doxycyline, see if you can get 60 days, with 200mg taken twice a day. Also, since it's only $15-20 bucks, it wouldn't hurt to buy a bottle of artemisinin (or, according to some other Lymenet people, artemisia), an herb you can get at the local health food store, and start on 200-500mg per day. That way, if you have another irksome infection called babesia, which has become increasingly prevalent and just as dangerous as Lyme, you'll have caught it early, too.


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Pinster56
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Yikes! I never realized this disease is so bad! I never knew anybody who had it and I previously thought you just get a fever and joint pain. And thanks, PinchotGail for the link to the rash photos...a couple of them look EXACTLY like my rash, although it's fading away now. I feel fine, but I am going to show the rash to a doctor this afternoon to see what she thinks.
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robi
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Most docs will take the "wait and see" approach. This approachcan run your life. Don't do it this way!!!!! At best you'll get a few weeks of antibiotics at to low a dose.

GET TO A LYME LITERATE DOCTOR RECOMMENDED FROM SOMEONE AT THIS BOARD!!!

robi


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Pinster56
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I'm sure the doc's know what they are doing if they practice in a Lyme prone area like mine--Eastern Massachusetts!
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robi
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Ummmm......Idon't want to sound crazy but kust look and see ow many folks from Mass. post here.

Really we are just trying to help. Many of us had docs we trusted. They just are not well informed even in MA.

Why not find a LLMD... you really are playing with fire here.

robi



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Pinster56
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After reading about all these symptoms that mimic other illnesses, I can see how docs could get confused as to a proper diagnosis...But in my case I am just going to show her the rash, tell her I got bitten there by a tick and it looks like a Lyme Disease rash, so I need an antbiotic. There is no symptoms that she needs to analyze. Sounds pretty simple!
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lou
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If you flip back thru the pages on general and medical forums here, you will find several articles, including one from Boston, that talks about the controversy over Lyme. Says that people are having to leave the state to get treatment--800 MA families taking their kids to a CT doc. There is a major problem in your state (and a lot of others).

You are so trusting. Hope it works out for you, but keep on your toes about this and if it begins to look problematic......


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Lymester
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Pinster: I will take insult if you don't listen to these posters and members. Look, the doctors in the business of taking care of people and if you weren't really concerned than you would never have gone on line to ask the question.

I have found more support here and gained so much knowledge just from this board. Get yourself to a doctor that will prescribe the precautionary 4-6 week course of abx.

You will NEVER forget this if you don't.


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Nal
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I lived in VA for 3 years and thats where I started getting sick. No, not all dr's recognize Lyme correctly-they certainly did not in my case at all!!! There are very specific tests that need to be run to determine it. Ive been sick for over 5 years now and I just got a full test for Lyme a month ago and boy was it positive!!! If you and your dr decide not to do any treatment right now, at least keep a daily/weekly log of how you feel. Keep in mind too that you may not show any signs of Lyme for several days or so.

Nancy


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treepatrol
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Newbies List

WELCOME To LYMENET


Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Lyme Disease symptoms 2005
Lyme Symptoms 2005
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
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Updated 04/19/2005


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Pinster56
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Well I went to the doc and she ruled out some things that it ISN'T (allergic reaction, cellulitis) and the rash is starting up again around the bite site, so she said why take a chance, so she gave me an antibiotic. Basically she said better safe than sorry. Curiously, she didn't take a blood test so I will never know for sure. Thanks for everybody's input. I never realized it was so serious...I just don't always understand whether the information age makes us overly concerned about things. I am 48 years old and when were kids we ran around in the woods without repellent and nobody ever worried about (or got) Lyme Disease!
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janet thomas
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Good! doctor gave you antibotic-which one, dosage and duration????? It's important.


Doxycycline?? 200 mg twice a day??? 6wks or more??? If you're still out there say something and I'll tell you everything I did wrong when I took doxycycline. Save you some grief.

It takes 4-6 weeks for the body to produce an antibody response which can be measured by blood tests so a test now would probably be valueless.

Did you take the photographs????? Why not?

NP40- thanks for the bellylaugh! Sooooooooooo true, and sad.

Janet


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lou
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Yes, let Janet give you some info on doxy taking. Like following it two hours later with probiotics to avoid diarrhea, don't lay down for an hour after taking it, etc.

This is a good start. Hope you will be on it long enough and at adequate dose. If only 200 mg a day, too low probably. Might be a problem if the tick gave you other gerrms too, like bartonella or babesia because these take other meds.

Will keep my fingers crossed for you.

Don't think the information age can be faulted for lyme paranoia. This is a case of ignorance is not bliss. And you don't want to learn the hard way.

Be sure to read about herxheimer reactions in the newby links, or you and the doctor may think you are having a bad reaction to the drug and go off it.

[This message has been edited by lou (edited 20 April 2005).]


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Lymetoo
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quote:
Originally posted by Pinster56:
I am 48 years old and when were kids we ran around in the woods without repellent and nobody ever worried about (or got) Lyme Disease!

We ran around in the woods too and got ticks every weekend for 10-15 yrs. That was before Lyme was "discovered."

Well, guess what? I'm now on disability with a whole laundry list of problems, from heart to bladder, to muscles, to joints, etc, etc. In short, I'm a mess, thanks to Lyme.

My Lyme disease was not discovered until 40+ years later. Plenty of time to do lots of damage.

Please tell us your dosage of abx, what kind, etc, so we can all quit worrying about you! It's very likely your MD short-changed you like everyone else on this board.

------------------
oops!
Lymetutu


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Pinster56
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My antibiotic is called Doxycycline 100 mg taken twice a day for ten days.
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Lymetoo
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Oh my!

Recommended dosage:
300-400mg a day for no less than 6wks.

If you have even just a few spirochetes survive, they will replicate in 4-6 wks.


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quic
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Hmm., Pinster,
If indeed you are infected, your dose and duration has a good chance of allowing the bacteria to become somewhat resistant only to come back in several weeks/months more virulent than ever.

I know this all sounds like paranoia to you.
Trust me, these people know more about lyme disease than your doctor. I too spent my childhood in the woods without ever having a problem.

I "encountered" some ticks from our Christmas tree in Dec. 2003 and have never been the same since. I'm in treatment for over a year now.

Channel 5 in Boston recently did a story about how families are travelling to CT to see Drs because they are frustrated with the ones in MA. Problem is that there are only a few here (in CT) that truly understand the disease. Anyway, here is the link to the story. Check out the video:
http://www.thebostonchannel.com/health/4384217/detail.html

You can potentially save yourself from years of poor health and angst by finding a capable Dr. now. Post in the "Seeking a Doctor" section for help.

Forget everything you think you know about lyme disease. Don't learn about it the hard way like all of us here.

Sorry for the harshness...just trying to help.

- Mike


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quic
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removed double post

[This message has been edited by quic (edited 21 April 2005).]


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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago!
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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Pinster56
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Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.
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robi
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Well, Pinster.....if you don't get some real helpp soon you are gonna be a long term lymnet member...........

Why are you so resistant to all the good info here?

robi


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Lymetoo
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quote:
Originally posted by Pinster56:
Well I'm sure the doctor knows what she is doing!

NOT!....as evidenced by the amount she prescribed. I hope you will check out the link provided above.

------------------
oops!
Lymetutu


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lou
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We tried. And failed to convince her, so time to give it a rest. I assume those multiple posts were intentional.

Hope it works for you Pinster. It really hurts us to say I told you so. We hate to do it.

It probably does look like overkill to you. People who were undertreated end up here frequently, and tend to be a bit dogmatic. Arf, arf. That includes me.

Maybe you weren't even infected. Hope so.


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quic
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I don't think the multiple posts were intentional. I got a multiple post also without trying. Lyment.org was behaving oddly at the time.
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doxydave
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quote:
Originally posted by Pinster56:
Well I'm sure the doctor knows what she is doing! They devote most of their adult lives to learning about diseases and they do keep abreast of the latest medical findings if it applies to their patients...She told me they see lots of Lyme cases. If they prescribed a dosage that was ineffective on a regular basis I'm sure patients continue to be ill. At some point the docs would come to the conclusion that they needed to "up" the dosage. Maybe if I had major symptoms weeks or months after the bite she would have jacked up the dosage. I was bitten only three days ago.

OK Pinster56,

Here's my story..
I was going to write this yesterday but got side tracked.

I was bitten this time last year.
I went to the docs feeling well.
I didn't know anything about lyme.
They gave me Doxy at 100mg twice a day for 10 days.
I got very ill very quickly.
They gave me more doxy for 21 days - same dose.

I thought the doxy was making me ill because a few days after I had been taking the doxy thing got allot worse. Dizziness, confusion, headaches, tremors. Doxy is usually well tolerated, ok it might make you feel a bit sick to start with if you take it on an empty stomach, but that is about it. I now know that it was not the doxy making me worse.

I had a CT brain scan which was -ve (they were looking for abnormal blood flow). I now know that a CT scan is not worth it. A spect scan would have been more appropriate.

Now, I have trouble working - 1 year later.
Now I am on high dose, long term antibiotics.
If I can't work any more I can't keep the payments on my house or pay for the meds.

Now I WISH I had had a longer term of antibiotics when it all started.

Yes my brain is affected.
I can't speak properly sometimes.
People think I am drunk.

The ONLY way doxy kills the bacteria is when it replicates. It does this by weakening the cell walls and as it reproduces, it breaks up. I wish I knew this when I was bitten.

The lyme bacteria replicates every month, so 10 days will NOT be enough. I wish I knew this when I was bitten.

The lyme bacteria winds it's way into your brain very quickly. I wish I knew this when I was bitten.

Doxy does not cross the blood-brain barrier at 200mg per day. It will at 300-600. I wish I knew this when I was bitten.

This is why the recommended dose is upwards of 6 weeks at 300 to 600 mg. I wish I knew this when I was bitten.

If I could wind back time (knowing what I do now) I would take the doxy as prescribed, but in the mean time I would have just 10 days left to find a lyme doctor (from ilads) AND get seen AND get a proper dose of doxy.

I wish I could wind back time.
I wish my doc knew more about it.
I hope I can keep this job down or things really will go bad.
I wish I had insurance.
I am glad my wife is supportive, she could have left me.
I don't "look" sick.

There is a small window of time where you are able to eradicate the bacteria. Pass that and you will more than likely have it for years because it burrows deep into your skin, bones brain - everywhere.

The antibiotics have a hard time getting to all these places, so don't let it get there in the first place.

One more thing.. I asked a group just like you have when things started to go wrong and I really thought they were over reacting. By then it was too late anyway.

I am not giving you advise here, it is just my story. Perhaps you will be luckier.

Lets hope you are not back here in a few months, but you are always welcome.

Don't let things get out of hand.

Take care.


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Pinster56
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Sorry about the multiple posts---it wasn't responding and I just kept clicking.
I know you all mean well, but it's still hard for me to believe a doctor would not know the correct dosage for something as simple as an antibiotic for a bactereal disease if there is all this information out there about Lyme Diesase! Maybe if she was some hick doctor up in the backwoods, but I think the docs in the Northeast are well informed...If one doc in Connecticut knows all the right stuff, why doesn't he present a paper about it at a medical convention? I hate to play the devil's advocate here, but perhaps he markets himself well to keep a long list of patients, if you catch my drift.


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robi
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You are losing valuable time. You are very niave if you think the med/insurance game is as easy as presenting a paper and everyone following along.

I hope you're tick was not carring any disease, but that is unlikely in your part of the country.

Have you read the newspapaer articles linked here?

Just read these stories.

Perhaps "famous" folks are more credible then the unknown posters of Lymenet. Maybe these articles will give some credibility to what we have told you.
http://www.suburbanchicagonews.com/entertainment/e01wells.htm Rebecca Wells
http://www.washingtonpost.com/ac2/wp-dyn?pagename=article&contentId=A19083-2003Aug4¬Found=true Amy Tan


Everyone here is interested in you not getting sick. We all wish we had the opportunity you are passing up right now.

Once this progresses it is too late. Treat now and you are saving yourself from a lifetime of treatment. After these first days from bite, the treatment is long, painful, confusing, and many(most) docs are unfamiliar with all the implications.

You will be really, really sorry. We are not hypchondriacs. Many here were healthy, outdoors people. ALl had productive jobs and lives. SOme have lost much of this.

Please seek an LLMD from this board.
We are not Drs. But we do know what happened to us and how we were misdiagnosed by Many doctors. Please get the appropriate help.

The defense rests its case,

robi


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lou
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You can lead a horse to water, but can't make it drink.

I have had to learn this lesson a number of times when it comes to Lyme. If people don't want your help, you can't help them.

Some learn from others. Some can only learn from their own experience. And they have a right to make their own mistakes. Hard to watch this happen, though. This is my last post on this thread. Moving on to the next newby to arrive. They just keep coming.


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doxydave
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quote:
Originally posted by Pinster56:

I know you all mean well, but it's still hard for me to believe a doctor would not know the correct dosage for something as simple as an antibiotic for a bactereal disease.

It is isn't it? Well you see there are two sides to this, side A will let you believe that the disease is hard to catch and easily treated with 10 to 30 days of doxy. Of course you might feel better after this as maybe 90 percent of the bacteria has been killed. If just 1 is left, you will relapse. It may take months or even years, but you will. By then it will be chronic and you will be here again. Remember that doxy only kills the bacteria when it reproduces.

Side B are more cautious and say that you should be given 300mg for a period of 6 weeks.

If you believe side A you could become chronically ill later.

If you take the advise of side B, you will cover side A's recommendations as well.

Most of us here have been here a long time because most doctors are fed miss information by side A.

Here are the guidelines from the doctors who have studied the disease. They are experts. They are not your local GP.

http://www.ilads.org/

If there are any web sites to look at, this is the one. Please click on the link, it might just save you allot of suffering. Look at basic information on the left.

If you need to find an ilads doctor, come back and ask, but it won't take long before the bacteria burrow their way into places where the antibiotics can't reach and you have already lost 3 days.

The choice is yours and a second opinion from another (ilads) doc isn't going to hurt right? Even if you just ask him what the deal is that your GP is giving you 100mg twice a day for 10 days. Many will tell you that on the phone for free.

Time is ticking.. and so what if you do take the doxy for a little bit longer?


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Monica
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There is a reason why they call it practicing medicine.

You may be one of the lucky ones who gets better on the drugs you've been given in the dosage you've been advised to take.

But I doubt it.

I don't know a single person in your position who was ever able to just 'blow off' Lyme disease.

It comes back to haunt you. Months, years later.

I know a lot of people who say they had Lyme disease "once" but they took doxy for 10 or 30 days and they got over it.

They say that while they willingly accept a new diagnosis of MS, lupus, Rheumatoid Arthritis, etc.

[This message has been edited by Monica (edited 21 April 2005).]

[This message has been edited by Monica (edited 21 April 2005).]


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Lymester
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I'm with lou on this.
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groovy2
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Pinster
Looks like you are going to be stupid.

So Pinster-- do everything you ever wanted
to do in your life--in the next six months
while you still can.

Get a good comfortable bed-- you are going
to be there alot.

Take some pictures of how you used to be.

Run around the block and jump up and down
as many times as you can--just to see
how it feels for the last time.

Spin around till you get dizzy-
it will be good practice for whats
to come.

-- You are going to have to learn alot
of medical terms--so you might as well
start now while you can still remember.

--Eat all the food you Really like-
dont worry about your weight-this
wont last long.

You are going to spend the rest of your
life as a drug addict -
just not the fun kind
-so get on good terms with
your doc and pharmacy. Closer the better

Learn how to use spell check and get a
lot of sticky notes-make some real easy
type of file system so thing dont
get lost ( I pin everything to the wall)

Do some simple math on paper-and save it-
to prove you used to be able to do it.
Hay-there you go- this could be the first
thing you pin to the wall.

Clean your home for the last time-Do a
good job its going to have to last a while.

Bookmark Lymenet.org -you will be comming
here alot. Oh yea- did I say to learn how
to use spell check.

Also get a good comfortable chair -
for when you not in bed.

Take up some hobby that you can do from
the comfortable chair. Paint by numbers
is perty good except for all numbers and
lines. Get a big paint brush-it wont matter.

Go to work and be productive-- build
up as much sick leave as you can- it
will come in handy.

Get hooked up with Meals on Wheels--
They deliver .Time is a waisten.

Talk to your neigbors - so they know who
that was standing out in front of your
house yesterday and wont call the cops.
-This will save you from getting out
of bed and having to find some ID.
Did you pin it to the wall?

Go to a bar--have some fun- Get Lucky
if you can. Have Safe Sex--You dont
want to give them anything.

Write down the names of the friends
you used to have-Pin to wall--Look your
doin good --you already have 3 things
pinned to the wall.

Get to know your kids--they wont be around
much from now on.You know how kids are.

Take a vacation- your not going to be going
very far from home - perty soon.

--Make a list of the 5 stupidest things
you ever did--Leave room at the top of
the page for not taking enough ABX for long
enough when the Lyme disease was easier
to Kill.

There wont be that many more
stupid things you have done because
you wont be able to do many more things.
-- Pin list to wall.--Jay--




==

[ 16. May 2006, 12:53 AM: Message edited by: groovy2 ]

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Lymetoo
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quote:
Originally posted by Monica:


I know a lot of people who say they had Lyme disease "once" but they took doxy for 10 or 30 days and they got over it.

They say that while they willingly accept a new diagnosis of MS, lupus, Rheumatoid Arthritis, etc.



Boy is that true!

Pinster....It really isn't about how smart your doctor or any other dr is. It's what they were TAUGHT. The medical schools are teaching incorrect information.

I'm serious. And I understand how difficult it is to believe that. Perhaps if you'll read this essay, you'll better understand.

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

------------------
oops!
Lymetutu


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Lymetoo
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Forgot to add....Please don't donate blood anymore. You don't want to pass this along to someone whose life is already threatened.
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NP40
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If you need heart surgery do you go to your local General Practioner ?

If you need teeth fixed, do you go to a gynecologist ?

Do you go to your local butcher for car repair ?

How about taking sky diving lessons from the appliance repair guy ?

If you have lyme.....................


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NP40
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If you need heart surgery do you go to your local General Practioner ?

If you need teeth fixed, do you go to a gynecologist ?

Do you go to your local butcher for car repair ?

How about taking sky diving lessons from the appliance repair guy ?

If you have lyme.....................


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hatsnscarfs
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I felt fine after my tick bite, no rash, no fever or joint pains. My doctor told me to wait 4 weeks and then have a test. Wham, 3 1/2 weeks after my bite my face became paralyzed (Bell's Palsy)and other symptoms came pouring in (still no rash, fever or joint pains). Now I'm in my ninth month of treatment and making progress.

Your only chance to kill this quickly is by taking antibiotics within 2 weeks of the bite. If you were my best friend I would take you to the Doctor right now and make sure you start antibiotics TODAY. Alternatively you can start them after you get really sick and take them for a few years.

I am also alergic to penicillin and avoid drugs however, once you get Lyme symptoms you will gladly take any drug that will kill it. I had no trouble with doxycycline or tetracycline. If it does make you feel crappy just think it will be over for you in 3 weeks. I have at least 9 more months to go.
No time to think about it, start the drugs now.
hatsnscarfs


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Lymetoo
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Hats,
She's got some doxy, but only enough for 10 days. It's 200mg a day.

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hatsnscarfs
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Yes, Pinster has doxy but is Pinster taking it yet?

An acquaintance asked me about my Lyme treatment. She had been bit by a tick and her Dr. gave her antibiotics. She didn't take them though, she was still thinking about it since she didn't really like the idea of taking antibiotics. As the months went on she was sinking deeper into brain fog and was having really bad joint pain. Walking was getting difficult. She was starting to think it might be from the Lyme, duh.

So she had the antibiotics but they didn't do her any good since she still hadn't taken them!

When I talk to people about Lyme now I tell them that if they or anyone they know is bit by a tick they need to get antibiotics AND start taking them right away. There is no time to think about it or weigh out "natural, alternative options" etc. The alternative is to wait, get really sick and then take them for a really long time.

My PCP and allergist are excellent at what they do each day. They were pretty clueless though when it came to Lyme and did what outdated books told them to do. At least they are open minded and now learning from the mistake they made with me. I'm on the East Coast where you would think Drs. would have more experience with Lyme. Not so.

So, Pinster, If you're taking the drugs now you need to work on getting more of them before they run out. Read my above post carefully. Stopping the drugs early was hell for me.
hats


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Noob
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Time for my 2 bits, I guess.

The feedback you are receiving here is correct. Don't take the tick bite lightly. There is a good chance the little monster injected you with some of the worse bacteria you can think. It's good that you have a doctor who gave you the abx "just in case". Many won't even do that much, without hard test proof. I would contact your state Lyme support group, they should have a list of Lyme literate docs (LLMD) and hopefully you will find one closer than in my area (100-200 miles away). At the same time I would follow the suggested dose of doxy (200 2x day) by the folks here and secure more anyway you can, while your head is clear. Good luck, I hope your next 8 weeks are better than my last 8 weeks. (when I was bitten)


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TheCrimeOfLyme
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I'm going to give Pinster the benefit of the doubt: maybe this person didn't fully read through the links. Then again, when you aren't very ill, there is alot you don't do ( such as not take life and health for granted)

So maybe he/she needs some quick points:
1.) Lyme disease only reproduces in the human body every four weeks, where you can then kill it with antibiotics. I'm sorry, so what is ten days of doxy going to do?

2.) Lyme disease can penetrate the blood brain barrier of the human body. Doxy at 200 mg doesnt GET to the blood brain barrier. I dunno, some people like borrelia in their brain. I don't.

3.) Im not catching Pinster's drift on anything about any doctor in CT. And there ARE papers presented. They're called ILADS conventions and much, much more. Try going to one- just once.

4.) A tick doesnt ONLY transmit lyme disease. Sorry. It has tag along coinfection friends, all of which require different treatment.

5.) Do all eye doctors know about delivering babies? What hand surgeon do you know can ooperate on a brain? Leave LYME to lyme specialists, period.

I probably just wasted 10 percent of my morning, without coffee, trying to educate the "smarter".

I congratulate you on not being sick, I really do. But don't take it from any of us- we're not sick. We come here for the free smilies.

And just in case you ARE still reading this post? That rash you got, is very diagnostic of contracting lyme. I don't give a flip if it faded, expanded, didn't expand, or shriveled up and jumped on some old

woman at Krogers. It's diagnostic, period.

Welcome to lyme disease.


Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I guess one problem is that most people think the spirochetes are just another bacteria, easily killed by a little bit of antibiotics.

They just don't realize how dangerous this organism is, and what it can do to the body. Yeah, borrelia in the brain. Now that's the ticket!

------------------
oops!
Lymetutu


Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
orion
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Pinster,
It appears that you would rather be right than well.

You might just get what you want.

orion


Posts: 245 | From Tickafornia | Registered: Apr 2003  |  IP: Logged | Report this post to a Moderator
lymster
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Pinster????? whatever,
I can't remember numbers more than 2 sec thanks to Lyme and Co:

But anyway, groovy???? couldn't describe it any better. Here I am sitting at the computer trying to find the cheapeast place to buy my abx, because my insurance money is totally gone after 4 months of Lyme treatment and believe me the bright yellow post its come in very handy.

I am laughing and crying at the same time and just thinking I wished I had the opportunity than Pinster???? is just throwing away right now; but I wasn't that lucky I never saw the tick, got the rash or anything like that. The only thing that I SAW COMING WAS GETTING DISABLED AFTER A BAD FLU, FOLLOWED by MILLIONS OF VISITS OF IGNORANT AND ARROGANT DOCTORS that told me to pop another celebrex to "kind of" relieve the pain and misery that I was having.

If I had the chance you have right know, I will NEVER-EVER throw it away.

lymster


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Lymeindunkirk
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Pinster, can't you see what attention you've gotten with your post? Why do you think just about everyone is trying to tell to open your eyes? These people have all experienced what you are going to soon enough. Six months ago I thought you got lymes only from a tick bite and that you took some medications for a few weeks and that was it. Boy was I ignorant! Just like you. I did however listen when a friend told me about her entire family having Lymes. And guess what? My child and I both have Lymes and coinfections. My child seemed to be a normal healthy child. We beleive that he was born with it. Find yourself a good Lymes doctor and get tested and treated asap. And if you don't listen to these people who have taken the time to try and help you then well, you'll regret it in time, trust me on this. WAKEUP.
A coworkers mother in law just died of Lymes. Her regular doctor (ignorant of course) was treating her for hypertension,while she also had bells palsy and chronic fatique. The heart surgeron who spoke to her family after she died asked "who in your family has Lymes?" Amazingly he recognized what so many others don't. Oh and the person that had Lymes in the family was the woman's husband who was already dead. She wasn't as fortunate as you. She didn't have so many people telling her what to expect and how she can get help. IGNORANCE will KILL YOU.

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groovy2
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Up --

Even tho its a old thead -
lots of good words there--Jay--

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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This post is definitely a keeper.

Will add a comment about hubby -- he never had a rash or knew about a tickbite. Within 2 1/2 months of a flu that just wouldn't go away he became disabled with Parkinsonian tremors and unrelenting nausea/vomiting/dry heaves.

5 years later he is making progress but a long way from well. Tremors progressed to include myoclonus and seizure-like episodes multiple times daily. Took 1 1/2 years to get a diagnosis of Lyme and another year to get any real treatment and to get diagnosis of coinfections Babesia and Bartonella.

So far he has seen over 65 docs, 28 ER visits, 10 hospitalizations (including 3 psych admits).

We are from Virginia and have traveled to 11 states in search of diagnosis and treatment.

About 4 1/2 months after initial flu symptoms ended up at Mt Sinai Hospital in New York City. We were referred there by another doc -- we thought that since it was a major hospital with a worldwide reputation it would be easy to get a diagnosis of something -- major depression/anxiety was NOT the answer we were looking for.

This was neurologist #2 out of 14 -- first 13 had no clue that tremors could be caused by Lyme!!!!!!

Doc #7 on the list (from New York) did order an ELISA test for Lyme which was negative. Next 25 or so physicians relied on this one test and never suggested repeating it or using a different testing method.

Even after got a positive PCR Lyme test most of the next 25 or 30 docs would not believe the test results because the test was from the "wrong lab".

The bottom line here is that Lyme is a CLINICAL DIAGNOSIS and if you even suspect a tickbite -- get to a specialist -- a LLMD (Lyme Literate Medical Doctor).

If you thought you had cancer you would go to the best cancer doc (oncologist) you could afford wouldn't you? Well, there was a survey done that determined that long-term "chronic" Lyme patients have a lesser quality of life than cancer patients.

That pretty much says it all.

Bea Seibert

P.S. Knew nothing much about Lyme disease prior to this other than that it came from a tickbite. Had never met anyone with Lyme. Since returning home from 4 years of medical travel have met many in the community who have Lyme or know someone who has it. One of the saddest stories is about the middle aged guy who attends adult day care so his wife can keep working to pay his medical bills.

The city is considering allowing deer hunting on private property to reduce the deer population. Yet the docs here are so behind the times we have to travel 4 1/2 hours to another state just for a primary care provider. Local doc fired us for doing alternative treatments -- IV Vitamin C and IV magnesium.

Don't count on the docs in New York or Virginia or anywhere else to diagnose and treat correctly. The choice is yours.

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Pinster56
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Hello this is Pinster56. I haven't been on this board in a year but I was surprised to find people on here are asking how I am doing. I can't believe anyone even remembers me! Anyway, it has been a little over a year since I got the tick bite and the rash. I actually never got any symptom of Lyme Disease, ever. The bite itched on and off for months, which was a bit strange, but to this day I feel fine. I am a very busy husband and dad dealing with my 7 year old daughter's dance classes, doing soccer coaching, softball umpiring, working out at the gym, and of course working full time, and so it appears my health is intact. So I guess I will never know if that initial rash was Lyme and the antibiotic they gave me prevented an infection, or that it was some other type of reaction. I guess you can call me lucky--and thankful. I have learned a lesson, though. I am scared of ticks now and I wear DEET every time I go hiking in the woods! Thanks to everyone for all your sincere concerns. Good luck to everyone!
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Tj33
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You must get rid of all vegetable cooking oils cook only with olive, coconut, natural animal fats, this will boost your immune system.

Forget all the nonsence about low fat diets. The immune system is fueled by natural fats. Coconut oil is the best. Get it from the web. Google " Dr. Mary Enig" and begin to understand how the immune system works. Doctors don't have a clue.

Stay away from all diet drinks with manmade sweetners. That stuff is poison... Regular sodas has manmade corn syrup and is not good either.

Medications only assist the immune system they cannot replace it.... Get rid of all pets. They can carry it... You don't want a reinfection from them...

Take the advice from those above. They know more than 90% of the docs (ducks) outthere...

Remember Lyme can be passed to others from you. Be careful....
Read up on the Herx reaction so you will be ready for it....

Good Luck

From a long term caregiver for a Lyme infected wife. I wish I knew then, what I know now...

Tj

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groovy2
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Pinster--

Wow how is that for a crazy coencidence--
Maybe ESP or Mind Meld --lol

Fill us in more on what happened--

Did you end up taking the meds--
if so -what- How much and how long--

My sister in PA got bit a started
doxi -400mg a day- for 5 weeks--

She started meds about a week after
infection --

(She had lyme For Sure -tho)

Now about 2 yrs later she still feels
good - AAAhhhh

It dose seem that many if not most
folks who treat Earily can kill
off these infections-- AAhhhh-- Jay--

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Carol in PA
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Jay/Groovy2:

It wasn't a mind meld.
I sent him a PM asking him how he was doing.


Pinster:
I'm so glad to hear that you're feeling okay.

If you should ever develop strange symptoms, please check in again.

Wishing you the best,
Carol

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
groovy2
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Carol
OK-
It must be you and I with Mind Meld--LOL
--Jay--

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
HEATHERKISS
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I took me 7 years to get really "sick".
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
Trina
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Hello,
If you read up on Doxy you will find that it has to reach a high enough blood leval to kill the spiroketts. 100 MG twice a day is also what they give teenagers for acne.

Even the Center for Disease control recomends much longer than 10 days.That never treats anything I have read.

My sister is a PA and her medical book says 3 weeks she gave me seven.And doxy is not the first choice antibiotic by any means.I am just allergic to the other two.

Ask your doctor how many tic bourne diseases there are.Think she knows the answer and how to treat them? Scientist think around 100 and know of 22.They do not know how to treat some of them.

A lot of people on this board have been infected by more than one disease.Very hard to treat.... better go to your library or type in lyme on any searh engine.....Better safe than sorry,,,

--------------------
Trina

Posts: 64 | From Mo. | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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