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    Old 10-16-2015, 08:28 PM   #1
    MrsLeonard
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    Question Revisiting ...

    I'm not sure where to begin but I'll jump in looking for advice, obviously I'm aware that true medical advice cannot be given over a forum... maybe I'm looking more for opinions, or if anyone has dealt with something similar...

    I'm 31 years old. Female. From Rhode Island originally. In 2003 I had a sudden severe migraine, had never had one before. It passed after a whole day. Couple days later, had another. At that point went to see my Dr. He did blood work, and urinalysis and came back and told me I was positive for Lyme Disease. I was sent for an MRI, and was told that judging by brain lesions, I'd had the disease for a very long time (he said 10+ years) and it had been dormant or no one caught subtle symptoms, etc. Suddenly symptoms came on like gang busters and I was VERY ill. At one point we were contemplating a wheelchair. I was treated with a round of antibiotics. Tested negative. Few weeks went by, symptoms returned. Tested again. Tested positive. Treated again, different antibiotics. Tested negative. Symptoms returned. Tested positive. Treated again. and so on and so forth for about 5 rounds until I was taking 3 antibiotics orally at the same time. Tested negative. Was told I also tested positive for Bartonella (by a Lyme Literate Dr.), nothing was done about that. I was tested a couple more times and kept testing negative. This was by blood test. I was also sent to a Cardiologist and put through testing and ultrasounds. Everything was normal there. Time passed and I accepted that I would have some lingering symptoms (migraines, joint pain, etc.). They stopped testing me. I moved out of state and sort of put it behind me.
    Now it's been 10 years since treatment and I've got some things cropping up and my current Dr. just sort of brushed it off when I told her my history (she's great with everything else but doesn't seem to know her bum from her elbow about LD). Most notable is the headaches returning, fatigue, and facial twitching, prolonged spacing out. I recently saw a NeuroPsychologist for applying for SSI (for mental reasons) and he witnessed two episodes of me "spacing out" in person and told me that I should be checked for partial seizures. I brought this up to my own Dr. and she basically said "Well... we could send you for an EEG but it would take a couple days, you'd have to go to OSU, and most times the EEG doesn't even show partial seizures but lets revisit that next time you come in..." that's in 3 months from now. These "things" are happening more and more frequently in the last week or so. One night last week I had about 20 of these incidents where I'd suddenly space out for 8-10 seconds, like totally unblinking, glazed over, dead stare and then snap to again. Some time later that same evening I started having eye, mouth, and muscle twitching around my cheekbone area, all on the left side of my face.
    Tonight I'm having the same thing. Not as many episodes of spacing out (which until now I'd thought was linked to mental issues, PTSD, etc.) but for about 6 hours my left eye has been twitching, occasionally the left side of my mouth/lip, and the cheekbone area again. Having a hard time staying focused and also having some odd "twitches" elsewhere, like suddenly my neck might jerk, or my left knee, etc. Obviously something is going on here and I sort of put two and two together that I've been having these episodes from the time I was a little kid (but nothing like this now), and the first Dr. did say I'd had the disease in my system for a very long time. I was diagnosed with LD at 18 years old, it stands to reason that these could have been LD related and were one of the only symptoms presenting from early onset.
    I haven't done a whole lot of research on this in years and just poking around a little tonight I'm seeing all sorts of new things that weren't talked about back then, like strains, etc. I also had no idea what Bartonella was, I wasn't told and I was told I was positive for that the last time I saw my LLD 2004 when he deemed me "cured". So nothing was done about that. Not sure if that's important or not.

    I'm concerned I might be positive again but I kinda know that I need to find a new Dr. I just don't know where to begin. Is it still true that blood tests aren't great and urine tests are the way to go?

    Has anyone here had issues like this? Where there was a large gap of time between testing and treatment?

    I'm tempted to hit the ER with these episodes of spacing out and facial twitching. I almost feel like I'd get taken a little more seriously...

    Would love to hear from anyone. Sorry for rambling.

     
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    tess201 (10-17-2015)
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    Old 10-17-2015, 02:46 AM   #2
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    Re: Revisiting...

    Good Morning,

    So sorry to hear of yet another case of LD being bungled!

    There are docs who call themselves LLMDs when they are really infectious disease docs or internists or something else. So, yes, I would definitely suggest you find a bona fide LLMD. Those docs relying on all those tests you had to determine your state of wellness is not something an LLMD would do. Lyme is diagnosed first by clinical symptoms, secondarily by tests because they are so unreliable. Your blood should have been sent to Igenex Lab in Palo Alto California (to date, the premier lyme testing lab).

    It sounds like you may have Bells palsy, common with neurological lyme, but treatable; however, the ER would be the last place I would suggest you go for help with lyme disease. Have you seen the DVD Under Our Skin? Well worth watching for accurate information on LD and why so many patients can't get proper care.

    I, like you, had LD for many years before it was properly diagnosed so I was in chronic, late-stage LD by that time. But I can tell you there is hope and help. You just need to find the right person to assist you. Doing your own research on this disease and reading other people's stories can also be beneficial. There may be a lyme support group in your area as well. Read the stickies at the top of this board for more info.

    I hope you can find a good LLMD soon. Let us know how it goes.

    Tess

    Last edited by tess201; 10-17-2015 at 02:49 AM.

     
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    Old 10-17-2015, 08:23 AM   #3
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    Re: Revisiting...

    I would not be going to the ER on the basis of LD. I would be going to ER presenting with what I'm worried is simple partial seizures, mental confusion, and facial/body twitching. In my mind, these things are serious and if my current Dr. doesn't seem to want to move her butt on them, I can't see the ER sending someone home who walks in with those symptoms. It could take me months to both find an LLMD, and be able to afford one if my insurance isn't accepted as I'm absolutely broke and currently in the process of applying for SSI.
    Just worried about the current symptoms. I can worry about finding an LLMD once I've had this looked at.

    Thank you so much for responding. I'll start searching. I feel a little lost at the moment.

     
    Old 10-17-2015, 10:39 AM   #4
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    Re: Revisiting ...

    If those symptoms are due to LD, which I would be surprised if they were not, then you need treatment for LD. The ER hasn't a clue how to recognize or treat lyme disease. In other words, you need to treat the source of your symptoms; otherwise, they very likely will just become chronic and even more difficult to address as the spirochetes continue to multiply, which they will do without treatment for lyme! Many of us have been down that road. Going to various specialists (and ER facilities) for symptoms of LD but with no resolution.

    Of course, you should do whatever you think best. I know how scary it can be to have severe symptoms. But after years of seeking advice from docs that had no clue about LD I finally hunkered down with treatment that actually addressed LD. The analogy we often give here is - you wouldn't go to a gynecologist for a broken arm. If you have lyme you need a lyme specialist to treat.

    If funds are an issue there are many alternative protocols that work well. I only did alternative and was happy not to have to deal with years of abx!

    I wish you the best with whatever you decide.

    Tess

    Last edited by tess201; 10-17-2015 at 10:41 AM.

     
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    Old 10-17-2015, 03:05 PM   #5
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    Re: Revisiting ...

    In light of current circumstances... is there any weight to going to my current Dr. and trying to get her to do blood testing to be sent to that lab?
    There ARE times she's listened to me on other things (she's great with my psych issues!) but she's 31 like me, just a baby Dr. really. I've been seeing her since she was a resident. It's possible I could sway her to learn more about it, and send testing out to the appropriate lab while I look around...

    Is this an angle I should even try? Would you? I've got the names of three Dr.s here (LLMD's) that I plan to try calling on Mon. But all of them are MD's and Primary care Dr.s which means that if by some lottery type luck one of them takes my insurance, I'd have to drop my current Dr. to take up one of them because obviously you can't have two PCP's...

    Thanks so much for being a sounding board!

    I think about the ER, I more meant that it would certainly put anxiety at ease to have someone say "Yes, this looks like seizures" or "nope, that's not what that is at all..." and not wait 3 months for my own Dr. to revisit that topic, though I'm sure I could get in with her sooner if I called.

     
    Old 10-18-2015, 02:02 AM   #6
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    Re: Revisiting ...

    In light of current circumstances... is there any weight to going to my current Dr. and trying to get her to do blood testing to be sent to that lab?

    Yes, many people do this. You could call Igenex Lab first and ask to speak with the doc. He will advise which test to order and then send the forms and such for your doc to draw the blood and send to them. But as I stated before, there are many false negatives for lyme so don't go by the test results alone. Yes, again, to educating your doc about LD. Maybe even give her the DVD Under Our Skin. I highly recommend that you view this as well!


    Is this an angle I should even try? Would you? I've got the names of three Dr.s here (LLMD's) that I plan to try calling on Mon. But all of them are MD's and Primary care Dr.s

    LLMDs are specialists in LD care. Just make sure these docs you mention are actually LLMDs and not just using that title. Ask how many lyme patients they treat.

    I'm glad to hear you are pursuing this approach to get the care you need.

    Tess

     
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