Lyme Doc In Dc?

[Dizzy Dame]

Does anyone know a Lyme literate doctor in DC or Baltimore? I'm pretty sure I'm a prime canididate for Lyme disease...I have ALL the symptoms and have hand much exposure to ticks over the years. In 2002 I had an outdoor job and used to pick ticks off me daily. Any info would be very appreciated!

Thanks,

Lauren

[futurehope]

I PM'd you. Check it out.

[ariella]

Also being tested for lyme

Dysautonomia + severe muscle issues + feverish episodes + exposure to ticks

You can find llmd listings on lymenet.org

Please keep me posted!

Ariella

[Dizzy Dame]

Thanks Futurehope for the dr's list. I've already scheduled an appointment with one of the doc's on it for August. It's wierd, the more I research Lyme, the more it seems that's what's going on with me. I feel so silly for not pushing this earlier (I tested negative for Lyme three years ago when I started having fatigue and muscle cramps, and I assumed that meant I didn't have it).

Now I have POTS, severe muscle pain (almost constantly), fevers on and off for no apparant reason, nerve problems in my hands and feet...the list goes on.

I'll keep everyone posted on what happens!

Hugs,

Lauren

[goldicedance]

I have a wonderful internist in DC who is "big into Lyme." She tested and treated me back in 1994-96, thinking my strange symptoms were caused by POTS. She does not take any insurance. If you would like to know more, please let me know.

[Dizzy Dame]

Thanks Goldicedance!

I'd love the name of your doctor if you'd PM it or post it. That way, if the doc in MD doesn't work out, I have another option close by.

Thanks

Lauren

[DancingLight]

Lauren,

I feel like I haven't gotten to say HOWDY to you in a long time!

I will be very interested to hear how you fare with the Lyme investigation. I am glad that you got an appt. so quickly.

As you know, I have been sick for 8 years and just got the Lyme diagnosis.

I am anxious also to find out what Ariella finds out from her testing.

I, too, questioned MYSELF...like, why didn't I think of this sooner. Although I don't have any memory of a tick bite we do live where they are all over the place. My Lyme test came back negative too and I never gave it a second thought. I did so much research to find out what might be going on and Lyme just never popped into my head. I saw infectious disease docs, rheumatologists, etc. etc. and NONE ever suggested it.

I am trying to let go of putting myself at fault b/c I have been so aggressive in pursuing answers...I have to say, it would be nice if people in the medical profession would think to look for it! They are too busy fighting over whetehr or not chronic lyme is 'real' or not! Kind of like how they fought over CFS or MS or AIDS for years!

Keep us posted...

Emily

[Dizzy Dame]

Hey Emily

I'm so glad to hear from you! BTW how is your treatment going? Are you starting to feel a little better?

Yes, if I do have lyme, I got it years and years ago because I first started having symptoms at 17 and I'm 23 now. I used to work on a horse farm in highschool and would walk out the tall grass of the pastures to bring in the horses, so I always had a tick or two on me at the end of the day. I also worked for a biologist later on, and got lots of tick bites, so I'm sure I've been exposed. People I talked to said that Lyme makes you sick, but goes away after awhile so I never thought about it. I didn't even learn until this year that Lyme can cause long-term probelms if left untreated!

You'd think that doctors would mention it before right? But I guess you're right about their arguments.

Hopefully I can start treatment and we'll see if anything changes. I'm trying not to get my hopes up too high though.

Please let us know how you're doing when you get a chance!

Hugs,

Lauren

[goldicedance]

Em, Have you started antibiotics for Lyme??? If not, what is the holdup? My doctor treated me back in 1995 for suspected Lyme even though the Western blot and the other test were inconclusive. I was first given Rocephin. I also tried doxicyclin. Feel better! Lois

By the way, my doctor is taking new patients. Lois

[AJVDK]

Wow! The more I also find out about Lyme I think it could be a possablity for me also. I am uptight as I get me lyme test results on monday! I am hoping it is Lymes as maybe then I can get some treatment and things will get better. I grew up camping and on the river, and then in college I was a photography major and I was always taking pictures in the woods, and lakes trying to get the perfect shot. So who knows. I don't want to get my hows up. It's been so interesrting reading though. I never new lyme's could cause so much.

Dizzy-

Please let us know what you find out when you go!

Emily-

What treatment are you going to be doing? Did you have the western blot test?

Ariella-

Have you had the blood test done yet? Please let us know what you find out!

Talk to you all later,

Amy

[DancingLight]

Warning! This is a bit of a long post, but SO many of you have asked what is going on Lyme-wise for me and I wanted to let you all know. I hope some of the information helps you. It's been a hard, hard road for me, hence the reason I haven't been able to be on the board as much as I would like!

Lauren,

Oh my goodness! You certainly have the 'exposure risk' factor for Lyme! Being around horses 'counts' as an extra risk factor. When I went for my Lyme consult he asked if I had ridden horses, which I had taken some horse back riding lessons, and he was very clear that this added to my risk. The fact the you actually had all of those ticks ON you over the years! Oh my! I will be very interested to hear what you find out and how you like the doctor you see.

Amy, Lauren, Goldie

I had a very extensive work-up done by a LLMD in NY. It was a HUGE out of pocket expense for my family--like $2000 in blood work. I HAD to do it at this point, as we felt that we were at a dead end treatment wise.

We knew it was as risk and a lot of money, but I am so grateful we did it. I could not leave that stone unturned.

He did very extensive testing to make sure we weren't missing anything didn't have blinders on just looking for Lyme. I had Lyme testing done at three labs--Stonybrook, Igenex, and Medical Diagnostics. The more 'routine' bloodwork (some that even in 8 years of being sick NO doctor had done!) was done at Quest. The Lyme tests were both urine and blood and Western Blots and Elisas.

I had some bands on the Western Blot and a reactive Elisa. We repeated the WB and Elisa at Stonybrook and again got a reactive Elisa. My Lyme doctor and POTS doctor consulted and agreed that treating me for Lyme.

The Lyme doctor feels that b/c the repeat testing was also positive on the Elisa and some WB bands (although not super specific ones) it's not likely a fluke. I probably do have Lyme. However, we all (me, POTS doc, Lyme doc) realize that it is a LEAP OF FAITH to do this treatment.

As I have said before, some doctors believe that anyone with a multi-system illness who has not responded to any other treatments believe that people deserve a shot at long-term antibiotics (3 months or so). We all decided that we were running out of options, had exhausted ALL treatments for POTS (except Mesitinon) and would give this a shot.

Some days I feel so confident that it IS Lyme and some days I do not know what to think. For so long we thought it was cervical stenosis. And now we think it isn't. Also, Lyme is such a murky area in medicine b/c the testing is so poor. But, we also know that neck surgery is more risky than antibiotics for a while, so we are going this route. We have not been able to come up with any other possible causes for my problems.

Goldie,

To put it mildly, the Lyme treatment has been very difficult for me.

No hold up in treatment. We started me on Doxycycline in January. I increased the dose too quickly (for me) and had a major ANS crash. We had to stop treatment to re-stabalize me b/c when my ANS goes nuts, I shake uncontrollably, am violently nauseaus, sweats, chills, tachy, weakness, can't get out of bed, can't eat, don't sleep and can't rest b/c of the over-active sympathetic nervous system stuff, and have incredible neck pain.

I rarely say how poorly I feel...but when I feel like that I literally feel like I am going to die and sometimes I want to die!

We were able to stabalize me, and re-start the abx. I am not on minocycline. I started at 50 mg ONE TIME PER WEEK!!! This is nothing! But it was enough to make me very sick. I have gradually worked up to a dose 2x a week.

I have days when I feel like an absolute wet dishrag and days when I start to see a little light. But, I am still completely homebound, etc. etc.

I keep telling myself that it has to get worse before it gets better with the herxes. We are trying to walk the fine line b/w treating the Lyme and keeping my ANS under control--which is a very difficult balance.

The fact that abx make me so sick in this way makes us feel like we are on the right track--b/c most people woudl certainly not be knocked out by one dose of an abx!

Lauren, Goldie, Amy and anyone else who is searching for Lyme answers or wants to know more about the journey I am on...

I have been tryingn to keep up on it on my blog...

www.adancinglight.blogspot.com

I typed all this out in hopes that it will help SOMEONE find answers. Navigating Lyme is soooo hard. I can honestly say that it was others on this site who got me to pursue Lyme and find a doctor and have walked me through the whole process. So, my ramblings are hoping that you will walk a path a little bit easier b/c of what I have travelled....

I think that Lyme is waaaaaaaaay underdiagnosed....and missed so often. I find it confusing that doctors don't believe in the idea of chronic Lyme b/c it makes sense that if left untreated, an infection woudl continue to flourish in the body. And Lyme grows slowly so it can manifest over time.

Anyways, my Lyme doctor says that I am a factory for Lyme spirochetes. Oh joy!

I really do not know what my healing journey will mean or be...I am very scared and overwhelmed and hopeful and joyful all at the same time. This is the first real hope I have had in a long time.

Hugs! And keep us posted!

It is neat to have a group of us who can 'talk Lyme and Dysautonomia' together, ya know?

When I got the testing done I didn't know if I wanted it to be Lyme or not...b/c Lyme is scary and no fun either, but it IS an answer.

Later alligators!

Emily

[Dizzy Dame]

Oh Emily I'm terrified and hopeful for you at the same time.

I've heard that if one responds poorly to antibiotics, that's a sign that one has Lyme...but I'm not 100% on that.

I certainly hope you start to see that light at the end of the tunnel as well, and just think (I'm sure you do) of how much better you could feel after the treatment.

I'll def. keep everyone posted on how the Lyme stuff goes...if it's anything like my POTS diagnosis, I'll have to go through multiple doc's and it could take months, but the more I learn, the more it seems that Lyme is the answer for me. This terrifies me and also gives me a tiny shred of hope that I could completely recover from the symptoms I currently have (which is not something I've allowed myself to think until now).

So Em, I'll go to your blog and read more. I really hope things start getting a bit better for you soon!!!!

((((HUGS))))

Lauren

[Guest malosp]

Oh Emily I'm terrified and hopeful for you at the same time.

I've heard that if one responds poorly to antibiotics, that's a sign that one has Lyme...but I'm not 100% on that.

Dizzy Dame and Emily,

Dizzy Dame, I am so glad that you are pursuing the possibility of lyme.

It does sound like you are a good candidate for lyme and your symptoms should improve. Of course it is different for everyone.

And you are right - if someone has lyme they will get worst on the antibiotics not better in the beginning. And it does sound like Emily was correct in her treatment of lyme.

I guess it depends on how long you have had it how sick you get.

I know for me that I have been on antibiotics 2 months and 2 weeks and the worst I felt with herxing was the first 6 weeks on tetra. Since being on biaxin/plaquenil I have not herxed as much and my symptoms of dizziness, fast heart rate, muscle aches have improved.

Dizzy Dame, so go slow with the antibotics and if you herx really bad reduce the dosage.

And again you are right that if lyme is causing your dysautonomia at least you have a chance to improve. I have improved so I know it can happen.

Emily - hang in there. I have heard of many a story of people being sick for years and years and they are much better now. Sounds like you have a great support system and I think that is half the battle.

[pamyla]

Hi Lauren, I also pm-ed you my llmd's name. Keep us posted on how it goes

It seems like we do need to have a lyme/pots group - It'd be nice to talk to others who understand both. Who would have guessed that lyme would be just as hard to figure out as dysautonomia....

I was dx-ed with pots almost 9 years ago, and just got the lyme diagnosis last month officially. My positive test came from Igenex. My quest labs are showing a little something, but not enough to be a definitive positive. That was after a year on antibiotics though....before that I had 3 or 4 negative lyme tests. Sometimes it really is a leap of faith on whether to pursue treatment. But then, I'd probably try anything if there is even a chance at improvement

Luckily, in the last year I've had a lot of improvement from the treatment I find my bad days are worse now (probably herxes), but my good days are better. I can stand longer and I have more energy overall. I'm hoping it all continues :-)

I'm not on the forum much these days, but would love to hear updates on everyone. I'll try to check in more often.

Emily - Sorry to hear you're having a rough time. Those herxes can be brutal. I often get that horrible neck pain too - not fun

Malosp - I was on the biaxin/plaq combo for many months and I didn't do that much herxing either, but I did have more energy. I just switched from biaxin to omnicef and after 2 weeks I herxed like crazy... Funny how different drugs will affect you like that!

Take care everyone,

Pam