I'm about to see my doctor today and I will ask her to start testing me for Lyme. I've been reading an incredible amount of data about it, had several epiphanies about my own medical history and decided to take the plunge and get tested.
Never did I imagine it was probably going to be so difficult. All the issues with tests, labs, results and regulations.. it's all very confusing and discouraging.
I have no idea about my doctors stance on Lyme - I'm keeping my fingers crossed she doesn't just laugh at me and throw me out.
I will be leaving here in about an hour.. any tips or advice as to how to ask for tests and how not to? I know most doctors hate self-diagnosing patients and esp. with Lyme it seems to be a sore spot for a lot of doctors so.. any advice is greatly appreciated.
Thanks.
[ 28. August 2007, 11:09 AM: Message edited by: AngieBug ]
Posts: 11 | From GA | Registered: Aug 2007
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posted
Hi Angie, I think that that 1st visit is a form of hazing we all go through ! If I may, my first suggestion would be to ask how you dr feels about LD. I think I would ask that before telling him/her that you believe you may have contracted the disease. The Nurse-Practioner I see was very open to the idea, but quickly admitted that she knew very little about it & wanted me to continue my search for an LLMD. She's part of my 'team' still, active in my care and able to communicate freely with my LLMD. If you have kepted any record of your symptoms, be sure to take that with you. If you haven't, do this while in the waiting room, maybe? Do you have a LD symptom list printed out, can you still do this before you leave? If you have one be sure to take it with you also. I'm sure that I'm missing a whole bunch of pointers, but I have to blame that on my Lyme-brain!! Good luck!
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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I have a list of my own symptoms with me, yes. I've also talked to my 'old' doctor briefly (back in Europe) who has known me for 25 years and who, too, suggested for me to get tested.
So I will mention that to her, too.
My most recent symptoms are severe heart palpitations, lasting for hours, and it just scares the hell out of me. I'm 32 years old..
I had her look at me because of that and she ordered blood tests. Of course everything is 'ok'. But my list of symptoms is long and I seem to go through phases; some months I seem to deal with more muscle/joint related problems, other months my anxiety, migraines and sleep issues seem to dominate.
Wish me luck..
Posts: 11 | From GA | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Angie,
For skeptical doctors, the most important thing is sometimes exposure to ticks. Can you pinpoint a time/place when you would have been exposed within the year you first had symptoms?
I've had doctors ask me where I lived when I first became sick. When I tell them Long Island they nod as if saying "ok, you can have Lyme because you lived in an endemic area."
I also recommend proposing it to your doctor as a possibility. Rather than saying "It really seems like I have Lyme disease" you can say "I've been wondering if it is possible that my symptoms are due to Lyme Disease."
Making it less direct, more wishy-washy, is less threatening to doctors. If the doctor responds negatively, then you can say you really want the test and see if they will order one for you, or walk out and find another doctor.
The real trick is understanding the a negative test, particular from a lab like Quest or LabCorps, doesn't mean anything. You might want to start with those tests, since they are usually covered by insurance and a positive from them will be accepted by more doctors.
But don't stop because you have a negative test.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I wasnt sure to start a new thread or not and pardon if this steps on the initial post but I was bitten by a tick in late May had no rash or fever and ignored it (stupid me). In late June i started having symptoms of tinging and weakness in right leg which spread to the arm/face. Initial blood test was negative, Western blot finally came back around md july as positive.
ID doc started me on 21 days of doxy 100mg twice a day. Symptoms continued and spread to stiff neck, insomnia, heavy head, vertigo and tingling in face and tongue. However, they would migrate from spot to spot over a day or two or even less. No real joint pain other than occasional knee and ankle pains. seems to be more nervous.
After 2 weeks on doxy, doc upped dose to 200 twice day, had a bad week after that then lowred dose back down. Finished 5 weeks (35 days) of doxy. Had symptoms but they would come and go quick first week off doxy. Now last 3 days symptoms coming back stronger including heavy eyes or eye pain/dry eye. Head pain, pain near ears/bones.
Docs may reccomend IV or spinal tap.
I am curious if anyojne had any similar symptoms and their treatment.
Thanks in advance
Posts: 13 | From NJ | Registered: Aug 2007
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bettyg
Unregistered
posted
welcome angie!
you're in/out of your appt. by now. i'm sending you 63 pages of newbie links, advise, symptoms long list, tests, disability, 1ST VISIT TO LLMD, much more, and TREEPATROL'S ARCHIVE link of over 1000 sites of good lyme info!
to check private messages, pms, go to top of left hand column under HELLO by flashing light or my profile.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Here's some helpful statistics & articles from Georgia.
you're in/out of your appt. by now. i'm sending you 63 pages of newbie links, advise, symptoms long list, tests, disability, 1ST VISIT TO LLMD, much more, and TREEPATROL'S ARCHIVE link of over 1000 sites of good lyme info!
to check private messages, pms, go to top of left hand column under HELLO by flashing light or my profile.
Betty,
would you mind fowding to me as well.
Much appreciated!
Posts: 13 | From NJ | Registered: Aug 2007
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I was SO nervous by the time of my appointment. First, I asked her about the results of my heart sonogram I had 2 weeks ago - apparently they didn't find anything abnormal.
Next, I told her about the conversation I had with my old family doctor who initially suggested getting tested. She raised an eyebrow. I got more nervous. I said:
'Well, what do you think?' 'I don't know.. what other symptoms are we talking about?' I handed her my 12-point list. It took her 2 seconds of looking at my list and she said 'Ok, yea, we can do that I just don't know, because since it's been so long, I mean, I don't know how good the chances are, you know..' I said: 'Well, at least it would explain a lot of the issues I'm having and I could maybe start focussing on the important treatments and quit trying to cure the side effects..' She nodded, came back with my papaerwork for the lab peple and off I went to get blood drawn.
I had also asked her about Quest and she said 'yea.. why?' I told her that I've read about omission of certain bands and she took a step back, shook her head and said 'Yea if more than 5 out of 10 bands are positive we call that a positive result. And we've never had any problems with them'
Um, what? Ok.
So yea.. the stuff was sent off right after it was drawn; the pick-up guy was actually waiting for the nurse to finish with me so he could take my samples, too.
One indicator as to how many potential Lyme patients my doctor sees: The nurse had to get out a book from under her desk to look up the number of samples or amounts or whatever she was supposed to draw from me! I felt great. (sarcasm).
She told me these test results would take 'a while' to come back and if they're negative they'd send me something in the mail, if positive they'd call me.
I left, got in my car and - regardless of what would happen with my test results - I need to find another doctor. I felt like an inconvenience and that's just plain wrong.
Aniek.. I had 3 tick bites at one time and some time afterwards a doctor on vacation actually pointed out my bulls eye rash. He suggested to take an anti inflammatory since - to him - it looked like I had an allergic reaction. That was all I have ever gotten in response to the bulls eye. That was about 15 years ago.
Thanks for the PM and the additional info, I'll start reading this entire forum now; I feel like I have so much to learn.
Posts: 11 | From GA | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
GOOD JOB!*)!*)!)! I am glad it went so well! I was scared for you- docs can be brutal and awful!!
I hope you find out what it is- could definitely be Lyme or another TBD or something very similar- or not- but you need to find out so you can get better- peopple are seronegative sometimes-
SOunds like your doc is a human being- if it is Lyme and/or TBDs try & train her- we need all the docs we can get*)!*!
Best wishes & welcome*)! Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
AngieBug,
I got an antihistamine for my bulls eye. I was also told it was an allergic reaction. That was 20 years ago, and I can't really blame that doctor because they didn't know then.
If you've had Lyme that long, it really is important to work with an LLMD. You want somebody who has experience diagnosing and treating Lyme. If not, you will end up with undertreatment and then get treated for symptoms only.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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funny you bring that up. Last night before I finally got some sleep, I kept tossing and turning thinking about that. What if it's too late? What if it's chronic? And even worse.. what if my daughter has it, too? She's a year old now.
I'm really beginning to panic.
My doctor yesterday didn't even flinch when I told her that, yes, I did have a bulls eye rash and no, it was never treated. She just had this blank look on her face and I wanted to shake her and be like 'Don't you understand? I have it! I'm sick! We need to do something!' But.. of course I didn't.
Guess I have to find a LLMD; which is going to be a piece of work down here from what I've read.. I'll make a post in the appropriate thread. Thanks Aniek.
[ 28. August 2007, 08:00 AM: Message edited by: AngieBug ]
Posts: 11 | From GA | Registered: Aug 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi AngieBug
Sorry you got the blank stare from your duck. I got that a few times along with the eye rolls
I don't have much faith in tests for lyme. In 94 I tested negative on my WB but had almost all of the lyme symptoms. Went to maybe 25 or more ducks who shrugged & gave me the door...
Then I finally found a LLMD ( A cardio doc who happened to get lyme herself...so she was sympathetic) She agreed to treat me dispite my negative WB because she also had lyme & tested negative.
I did the abx & got 80% better for 9 years on a maintance dose of antibiotics ( had been sick & untreated though prior to treatment of 7 years)
I wanted to go back & tell every duck that gave me the blank stare, the eye roll & door that I did in fact have lyme & the treatment worked.
You can still have lyme & test CDC negative...(not have 5 bands light up) ...my last test from Quest was IgG Neg & IgM Equivocal...But I responded to treatment well again.
Personally of all the labs I trust www.igenex.com in CA the most. You can have your blood overnited to them using any lab, just need a doc's sigature.
But any lab for a WB is still about 50/50 at best.
Try not to panic...You definetly have to find a LLMD to get the proper treatment. Lyme & the co-infections are tricky disease's to treat & you may have to travel out of state . There are not many LLMD's left...the medical boards are trying to "run them out of dodge"
I had to travel out of state but it was worth it to get my life back.
Hope you can find a LLMD & get some treatment soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Dana, thanks so much. Seems like it's quite the battle I'll be facing soon.
Well.. I'll see how this initial test goes (Quest of course..) and since I don't like the way I was treated so far, it's time to change doctors anyways. I will contact the one I found in SC and take it from there.
Posts: 11 | From GA | Registered: Aug 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi angieBug
Not 100% sure but I think there are no LLMD's in SC. I live in SC and had to travel to NC for treatment.
You may want to call or e-mail the SC Lyme Disease Association to verify that the doctor you have in mind is in fact a LLMD.
posted
So I just got a call back from my Doc.. 'Just wanted to let you know there is no indication for Lyme Disease!'
Great. So I went ahead and scheduled another appointment right away. The lady asked me 'is there a specific reason for teh appointment?' and I said 'yea.. I'd like to rum the next set of tests.'
Silence.
I said 'It's very common for this test to come back negative and I'd like to go ahead and do the next ones.'
'Oh. OK.'
Man, this is so frustrating.
Do you guys think it makes sense to even ask her about the IGenX?
Posts: 11 | From GA | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Have IGeneX send a test kit to your house and take it to your doctor. That's what I did.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Now.. I'm reading more and more about the difficulties detecting late LD.. is there a test that's more likely to be succesful?
Posts: 11 | From GA | Registered: Aug 2007
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quote:Originally posted by AngieBug: Now.. I'm reading more and more about the difficulties detecting late LD.. is there a test that's more likely to be succesful?
Shouldn't a western blot show positive for lymes whther active or not? I am new to this and was bitten in May and am being treated.
Posts: 13 | From NJ | Registered: Aug 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
A WB is 50 % accurate. That's 50-50..might as well toss a coin. I think it's about the same maybe even higher in late stage or chronic lyme.
Lyme Disease is a clinical diagnosis...based on patient symptoms & history.
In chronic or late stage lyme a person may not be producing antibodies any longer. Or Bb, the lyme spirokete, may not be as much in the blood, but deeper into tissues & organs. Please see link below.
There are alot of reasons a person can still have lyme, early or late stage and test negative on a western blot: Here is a link that helps explain why you can have LD and test negative:
You need a LLMD because lyme is still a clinical diagnosis. And if you get tested threw igenex it is important which bands light up...only a LLMD will know how to decipher this information.
Lyme Disease and it's co-infections are very tricky to treat. I would not feel comfortable having a duck treat Lyme disease & co-infections.
Ducks are not up on the latest research, meds & patient experience. And I don't trust a duck as far as I can throw him...which isn't very far
Save yourselves alot of suffering and please try to get an appointment with a LLMD.
I must have gone threw at least 25 ducks in my years with lyme, alot of suffering, humiliation and neglect before I found a LLMD & got treatment & got my life back.
healing hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
dana.. thanks also for the PM.. I think the LLMD I was talking to you about in SC is fairly new; I will now get in contact with my insurance and see how far they're willing to go. I had another sleepless night, not knowing where to even start. I guess insurance should be my first point on the list.
I'll go check out that yahoo group also, pmerv, thanks again.
Posts: 11 | From GA | Registered: Aug 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi AngieBug
Good luck with your journey to wellness. Looks like you have some good contacts & some information to go on.
Seems like a good place to start. Just take one day at a time and try to read everything you can get your hands on about lyme & it's co-infections.
Maybe start in the newbie section & just read one link a day? I have found the more educated I am about this disease the easier it is to understand all that's happening.
Thanks for letting me know he's new & if you get a chance after you see him, please let us know how you are doing & if your like your LLMD. We deperately need a good one here in the south east.
I will keep you in my thoughts & prayers
Health & healing Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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! If I may, my first suggestion would be to ask how you dr feels about LD. I think I would ask that before telling him/her that you believe you may have contracted the disease. The Nurse-Practioner I see was very open to the idea, but quickly admitted that she knew very little about it & wanted me to continue my search for an LLMD. She's part of my 'team' still, active in my care and able to communicate freely with my LLMD.
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