Lyme Disease Community
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Avatar universal

Just diagnosed with Lyme!

Okay, so long story short (I posted on the EBV board a month of two ago), I have been ill for the past few months and was starting to get very depressed because I knew something was wrong and I didn't feel like it was just mono.  I convinced my dr. to do a lyme's test and I just found out it was highly positive/elevated.  I am now starting 3 weeks of antibiotics.  The funny part is that I was on antibiotics a few weeks ago and no wonder I felt better towards the end of that cycle!  Anyways, from what I have researched, there are no LLMD/lyme's dr's in my area, so I am just going to do the 3 weeks antibiotics and hope for the best.  I am wondering if I've had it for years because as a child I went to MN every summer and I remember removing ticks.  I am 30 now and especially in my 20's I struggled with on/off depression, low energy, strange symptoms, lethargy etc...  I have had an EKG/MRI/CT scan etc in the past 3 months and all are normal, so that is good.  Any insight or advice for me?  The good thing is that I just finished the last rotation for my doctorate yesterday, so I have a couple weeks off and then graduation/holidays then I am not scheduled to start my job until Feb., so I am hoping to heal within the next 2 months.  So thankful that it's not all in my head.  
18 Responses
1692704 tn?1307211780
Three weeks of antibiotics may not be enough depending on how long you have Lyme. Also Lyme can involve co-infections which may require different treatment. It may be worth it to still see a LLMD even if you have to travel, in my opinion.
Avatar universal
Ditto what Ree said, in all respects.
Avatar universal
I went to that website where you put in your zip code etc and it lists the closest one and they are over 3 hours away.  I think I'll wait until I get the rest of the results next week and then make an appt there?  What different treatment do LLMD's do?
Avatar universal
and why does it seem so secretive?  I don't understand why they aren't listed online anyway, seems very strange to me.
Avatar universal
It's all secret-like because there is a raging war in the medical community about how to diagnose Lyme and how and how long to treat it.

In some states, Lyme specialists are getting their medical licenses revoked for continuing to treat after the few weeks of antibiotics the establishment docs use.

The docs who first identified Lyme about 30 - 40 years ago have locked into their first assessments and are still in control of the main doc organization for infectious disease, the IDSA (Infectious Disease Socy of America), and their rules are enforced by the state medical authorities in some states.

A competing organization, ILADS (Intl Lyme and Associated Diseases Socy) continues research and updates to its understanding and treatment practices, but docs who follow ILADS are being hauled up before medical boards for 'over prescribing' and sometimes getting their medical licenses yanked.  Even in states with 'freedom of conscience' for docs, there is a lot of heavy pressure put on the Lyme docs to do it like the IDSA says.

There are lots of websites and ways to find a Lyme doc, so tell us what area you live in and we can give you some ways to look around online and locate someone perhaps closer.  Like any area of developing science and medicine, there ARE quacks out there, so keep your antennae up, and educate yourself.

Take copies of all your tests to date with you to whatever doc you see.  Never know when they might be useful, since Lyme is a tricky disease to diagnose and treat.  
Avatar universal
Allergy nerd... So did you have a severe sore throat, crazy tongue? Mine is like coated in the back yellow/ white ect... Migranes too? I have been tested for HIV 6 times outside the window period. And ford said maybe Lyme ? Im going to immunoligist Thursday. Im going to ask my doc to test me
Avatar universal
lol,,,, i just wrote to you on the EBV forum,,, glad you took ewford's advice!!!

Pam ;)
Avatar universal
Be sure to get your own hardcopy of the test results and keep your own file at home.  Never know when they might be interesting to a later doc, and getting full copies later can be iffy.

also be aware that the tests are (1) not terribly accurate and (2) need to be read in conjunction with your symptoms and (3) by a doc who understands Lyme symptoms, which most docs don't.
Avatar universal
I have found 3 LLMD's, but they are all 3 hours away from me- in Kansas City and I am in Lincoln, NE.  I guess I will try to call them tomorrow and see what they say...  I will make the trip if it will help me feel back to my old self.  Is there any way to know how long I've had it?  It's strange that I have mono and lyme's at the same time...  I'm on day 3 of the antibiotics and I feel like I am feeling a tiny bit better, it's hard to explain.  
Avatar universal
About knowing when you first got infected:  

Unless you saw the tiny tick and/or had a spreading circular rash, there are no signals of initial infection, except to look back and think about when you started feeling lousy.  It hits some people really hard, while others it kind of sneaks up on.  I suspect (and I'm not medically trained) it's variation in one's personal immune system, in which co-infections, whether it's a re-infection on top of a low level one, and also which of the many strains of Lyme it could be (more are being discovered all the time ... or maybe it's just that the tests are finally becoming more accurate).

So the short answer is:  often nobody knows, and in the final analysis, it probably doesn't really matter.  What counts is getting diagnosed and treated by a knowledgeable doc.  Eyes on the prize.

Co-infections are common, meaning diseases the ticks bring along with Lyme.  And because of the subtle effects Lyme has on the whole body and its various systems (endocrine, etc.), I suspect other test results are often thrown off in a way that makes sense in the bigger picture that a lot of docs don't see.  So the mono symptoms may or may not be related to Lyme, but it is what it is.

Glad you're feeling a little better!  That's a good start.

Three hours seems like a long trip to get to an LLMD, but it's not nearly as long as having Lyme f-o-r-e-v-e-r.  Go for it!
Avatar universal
The dr. in KC isn't taking new patients.  Looks like now the closest one is over 5 hrs away... I left a msg on their machine.  I feel so discouraged.  My dr. has been very helpful and open and I am going to discuss coinfections with her too.  
All of this started with a flu-like thing in August out of nowhere, but I thought it was the mono.  I wonder if I also got lyme's then (I was down in TX) or if the mono activated the lyme's worse?  I have been feeling lousy since August.  Now I feel super fatigued, dizzy, a little shaky and just not right.  I have 2 months before I start my new job, so I hope to be feeling better by then and at that point, I won't be able to travel for a dr. at all either.  I am scared.  I've been told to look into the salt/c thing?
1094370 tn?1317134825
I would drive the 5 hours...get a cheap hotel room and stay the night.  Your health is worth it!!!
Avatar universal
yeah, I am going to do my best, but they've got to be able to fit me in BEFORE I start my job!  I don't know how to not be worried that I'll feel like this when I start working...  I have got to try to stay positive.
Avatar universal
I made an appt with Dr. P in IL for later this month, I wanted to get in to the IA office, but I would have to wait another month.  So now we're going to do an 8 hour drive the week of Christmas...  Who knows if the weather will cooperate for the drive too, we'll see.  I can't believe it's $500 for one visit and insurance doesn't help, ugh.  Thank goodness for credit cards I guess.  
Avatar universal
Not to rain (or snow) on your parade, but if you have an established case of Lyme (meaning not brand new), a couple weeks of antibiotics is (from what I read) not likely to kick the infection.  This is one of the aspects of Lyme that nonLLMDs don't get.  

It is what it is, tho.  Go with it.
Avatar universal
What if it is acute though?  I don't think I've had it that long?
Avatar universal
I'm not medically trained, so don't rely on me at that level.

That said, as far as I know, there is no fixed cut off date from when an 'acute' infection suddenly becomes a 'chronic' infection.  There is in my experience very little in the Lyme world that is clear cut, and I found it helpful to be ready to roll with the punches of whatever happened next.  

There are complicating factors:  the ticks often carry more than one disease, and those diseases often need different treatment from Lyme, and if so, treatment may be given for the co-infection first, and then the Lyme treatment begins.  

Treatment for Lyme itself (esp. once it is not a very recent infection -- and many of us don't know when we were first bitten) often extends for months, not a couple of weeks.

None of this, even if it comes to pass, means you won't be ready to start work.  It just means don't be shocked if you find out it's not like an earache.  One thing Lyme teaches is to be ready to roll with the punches, play it as it lays, however you want to phrase it.

So stay loose, keep an open mind, and see what the doc says.  Finding a good doc is an excellent step, and you're doing that -- so you're on your way.  Let us know how you do!
Avatar universal
and PS, none of this means you won't be able to work.  Many, many of us work full time, straight through, while sick.  I found the treatment not to be a big deal at all, tho others have some harsh reactions to treatment (called a 'Herx', short for Herxheimer reaction, when the bacteria die off and make you feel lousy).  Every one is different.

All I wanted to convey to you is not to ASSUME you will be fine and operating at 100% two weeks after you see the doc.  Be ready to roll with the situation, and you'll get through it.  Moneyback guarantee!
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