Lymes disease

[Coolio Hernendez]

I have been dealing with Lymes disease for 20 years.

I was dig in 1987 and wow!!!  Most doctors do not know how to treat it so they just give you pain killers and muscle relaxers.

I have to keep this in mind as i battle to stay clean. My mind keeps telling me "you have lymes just do the pills the way the doctor says".

I think most people have some sort of medical condition that makes them feel like ****

I'm still clean!!!!!!!!!!!!!!!! Sorry but everyday is still a struggle.

[Coolio Hernendez]

Just try not to think about it (i know thats hard).

I have seen the advice you have given others, you are a great person!!!!!!!!!

[Jacqui805]

I hope you continue to get eval'd then.  There are Lyme Disease Clinics, but you have to be careful because some of them will tell everyone they have it and put everyone on a PICC line.  I just know because of the three out of four of my family having had it, and being a nurse.  Let me tell ya, almost losing my husband to Lyme-related meningitis taught me a lot.  Scary sh*t man.

I have not been doing so hot.  S E V E R E anxiety is plaguing me, as does sleeplessness and pain.  The anxiety makes it all worse and has really left me feeling broken, defeated and depressed.  I had to hang here all day just to get through it. I may try it tonight, when I'll inevitably be up again, like last night, the night from hell.

I'm hangin', don't know how, but am.  I wish you the best and am thrilled you're still clean!

Jacqui

[Coolio Hernendez]

I did have a deer tick and huge bull's eye rash. When i was dealing with this when i was a kid no one ever asked me that. The older doctor did and he tested for Lymes and got a positive result (that was 1987).

Wow you really know your stuff.

How have you been doing?

[Jacqui805]

I'm off for now, but I'll be back, if not tonight, tomorrow.  

[Jacqui805]

I was thinking about Sjogren's and also Kawasaki Syndrome.  That one is typically with peds. but also occurs in adults.  That's possible.

[Jacqui805]

and by the way, I lived in the city the first time I contracted it.  Was dating hubby in his neck of the woods (literally).  Also, the tickS that carry the disease are in the city now too.  I say tick s plural, because lots of people, including most docs, think that Lyme is carried only by the deer tick.  This is not true, it has been proven that 5 kinds of ticks carry it.  This is important because ******* docs ask two stupid questions which lead to people not being diagnosed or treated.  First one is, were you bitten by a tick?  Often, you'll never know.  Doesn't mean if you say yes that you don't have it, but they often stop with the Lyme thinking right away.  Second dumb question is, if so, Was it a deer tick?  Again here, it's dumb, because other ticks carry it as well.  I used to work for The National Board of Medical Examiners and have documented proof that this is true.  When my daughter had symptoms as a baby, I knew what it was, and even pulled many ticks (happened to be deer ticks) off of her.  The doc even with all of that info told me she didn't have it.  I begged him to test her, and he reluctanly did so.  I received a call one week later that she did in fact have it.  Also, not everyone gets the rash, and not everyone that gets it, gets the typical bullseye rash.  So that's another dumb question.  I say dumb, because they are supposed to know better.  When you are finished your training our licenses dictate that it is up to us to keep up with current medical knowledge.  It is strictly on your own though, so consequently, many do not do it.  

[Coolio Hernendez]

When i was dealing with the dry eys, i had them test me for everyhing (but Lymes) lol.

I thought it was Sjorens. It was not.

It is real hard to walk and i can barley hold anything in my hand for more then a couple of seconds.

I know that it is no excuse for my pain pill problem, but it sure made it easy to do.

[Jacqui805]

Well, while tests do often show that you've HAD it and don't now, it is also possible for that to be true, that it's not acute, but you may be suffering from the permanent effects. From your story, I'm not sure how you wouldn't be.  Whenever you're not completely on-board with an opinion, do seek out another one.  Maybe doc is right, maybe not.  That doesn't mean you didn't suffer from damage before it was irradicated.  

It's also possible that the test is technically right, but again, it just didn't "catch" the spirochete.  

It's also possible that your s/s are from something else.  Do you happen to have really red hands, and a wicked tongue?

[Coolio Hernendez]

Thank you. I do not come across many people that know what lymes is.

We knew i had it 20 years ago when as a child i almost died, it took 1 year os before an older doctor tested me for it. The other doctors never thought about the fact that i was a city kid who just moved to the country and was in the woods all day every day. And then all of a sudden could not even walk.

They did the best they could at the time with antibiotics. Things were fine for years.

About 4 years ago my eyes became really really dry and i was always at doctor for tons of different things, but i never mentioned Lymes because i thought it was gone.

I was just tested for lymes 6 months ago and the doctor almost fell off his chair at the levels.

Sent me to ID doc who says it is just the old antibodies in my system.

[Jacqui805]

If untreated, undertreated, or mistreated, the disease progresses to different stages with different organ system involvement and PERMANENCE.

[Jacqui805]

Dude!!!!  Pain meds and muscle relaxers.  I have a huge experience with Lyme Disease.  I have contracted it myself three times, one of my daughters once, and my husband contracted Lyme-related meningitis once.  You need to be treated with a very specific antibiotic for a very specific amount of time.  After that you need to be re-tested and and then watched.  The spirochete that causes Lyme "hides" in your blood.  So, even if tested and neg., doesn't mean you are.  That blood sample only reflects that particular tube of blood.  I mean, other bacteria are more evenly spread out so to speak.  I'm trying to lay-speak so forgive me here.  With Lyme, it's not like that, and the blood drawn may not have pulled out any of the spirochetes.  Or you've got them in another fluid, like cerebrospinal fluid and would need a lumbar puncture to diagnose.  Often, Lyme is diagnosed without a positive test if one fits the clinical bill and the doc wants to try treatment to see if you improve.

     This is serious dude.  If you've got it, you need treatment, not just any antibiotic, Doxycyline is specific for it.  If you can't take it there is another one.  If it's in the cerebrospinal fluid you need I.V. Rocephin.  Even if you are treated appropriately, this does not mean it will be irradicated.  Sometimes one needs I.V. Rocephin anyway.  I did and received it at home.  You have a PICC line placed and receive visits from a home health care nurse.  You self infuse the med., they teach you how.

     Please get tested and treated if necessary.

[IBKleen]

They give you pain meds for that? WOW.....

Yes honey, be careful with that...