Made it to the dr

Discussion in 'Fibromyalgia Main Forum' started by Misfit101, May 26, 2010.

  1. Misfit101

    Misfit101 New Member

    With help from DH. Hes never had to take off work to take me to the dr. Yeesh. Anyway...i tell her all my symptoms and went on to tell her about this board and some of the suggestions made to me. She said after hearing ALL my symptoms (i left NOTHING out) that the first thing that jumped out at her was Lyme disease. Went on to say that as far as she knew there werent any documented lyme from a tick in state. All exposures were out of state. I told her about the man dh works with whose exposure was from an oklahoma tick. That surprised her. So she took several vials of blood and rx'ed prednisone. I told her what i learned about THAT.just shook her head. Was going to rx an antibiotic but said protocol doesnt warrant it wo a current tick bite. She assured me shed get to the bottom of it. The journey begins.
    [This Message was Edited on 05/26/2010]
    [This Message was Edited on 05/26/2010]
  2. victoria

    victoria New Member

    for starters go to the lyme board here. I started a stickie at the top giving places/resources etc. Including lymenet. The Canadian Lyme site actually has a lot of good info as well (canlyme) as do many many others. You'll see a lot listed at the Lyme board here, including alternative possibilities if you cannot endure the abx. Many have found out that they have Lyme and/or other tick born infections.

    I reallllly hope she ordered a western blot from IGENEX labs. They specialize in testing for lyme and co-infections. Anything less than that like PCR is way less reliable, the IGENEX testing itself is only 50-70% reliable as it is. The bottom line is regardless of results, a clinical trial of adequate abx is necessary - even the CDC says it is a clinical diagnosis that should NOT be based on results of WB even.

    Not many come up with all 5 bands positive that the CDC looks for on a WB for 'tracking/surveillance'.... my son was one of the 'lucky ones' that came up with them tho. Not just once but twice within 6 months, before and after 6 months of treatment. He'd been steadily going downhill in his mid-teens, had lots of pain and neurological problems. It took 3.5 years of abx to stabilize him. He had bartonella & babesia as well, from what we could tell. Tests for co-infections are less than 50% reliable.

    I don't remember, if I ever knew, what state you live in, but it's been reported in all states. Once you go to some of the Lyme forums etc, you'll realize that.

    Deer ticks are so small, you may never have even known you were bitten. Typical size is the size of the period here. Bloated of course, they're bigger. Bull's eye rash may have been atypical or not even present-- We never saw one on our son.

    Yes the journey begins, so--don't stop with this doc if she's not willing to treat according to clinical dx just because the tests are not definitive. On there is a section where you can ask where is the nearest doctor to you confidentially. Unfortunately Chronic Lyme has become a medical/political controversy regarding treatment, thus the need for confidentiality.

    OK that's for starters, I'm sure some others will be along to post as well....

    all the best,

    [This Message was Edited on 05/26/2010]
  3. Misfit101

    Misfit101 New Member

    Theres a lot of information to take in. Even if i get a negative result, i will request further testing. I want to make absolutely SURE this isnt (or is) lyme. I will go to the library and print out all the info i can. If shes serious about getting to the bottom of get more info and not bat an eye at further testing. Thank you all for the valuable information. I didnt know that about your son victoria. Glad you all were able to find out what it was and get treatment!
  4. victoria

    victoria New Member

    the best advice I can give you is to find a LLMD no matter what this test shows and try a trial of abx.... the abx used will kill more than just Lyme, will also get many possible other tick infections and then some. Unless you have really great insurance that will pay for everything.

    The average amount of $$ spent before a Chronic Lymie and/or other tickborn infection gets a diagnosis is about $75K. Again, that's just to get the diagnosis after exhausting many other possibilities.

    To add to the difficulty, you may not have Lyme, you may have some other stealth infection (so called because they can invade even our white blood cells and anywhere in the body they want to, just like Lyme) like CPn, mycoplasma to name a few.

    I'll bump up a thread that I restarted on this board after another older one disappeared about other possible diagnoses. Sadly it's a pretty long list of possibilities.

    all the best,
  5. Misfit101

    Misfit101 New Member

    I plan on printing pertinent info and mailing it to her before my test results come back. I hope she reads it. I dont know what all my ins pays for. Guess ill find out. The man that dh works with who has lyme has a dr in tulsa. I want to talk to this coworker. Its possible that with a referral my ins will pay. I REALLY wanted that abx.
    At one point i told her that i didnt want her to think that i wanted more pain meds...that what i really want are answers and fixed. She spun her chair around and lnkf me in the eye. Said "becky how long have i been treating you?" i responded about 2 yrs and she said its been over 4yrs. That im one of the last chronic pain ppl she still sees. The rest have been dismissed. She knows i wasnt drug seeking. Made me feel better about that at least.[This Message was Edited on 05/26/2010]
  6. HeavenlyRN

    HeavenlyRN New Member

    Thanks for letting us know about your MD appointment. I was thinkin' about you today.

    Sounds like we may still have to have a slap-fest with your doc, if she doesn't look into the Lyme stuff more seriously. Just let me know.

  7. Misfit101

    Misfit101 New Member

    Jan...thank you for thinking about me! I never cease to be amazed that total strangers could care so much. Even going thru the trouble to get info at my fingertips. Makes me quite emotional actually. We may have to open up a can on her yet...but i think we need to start with your former employer and ins co 1st. I really have always liked my dr. Just hope she isnt a quitter. Tonite i am so hot i cant stand it! I accused the hubs of turning the thermostat up. Its on 68. Everybody else is freezing and im in my bedroom which is the coldest room in the house and have my table fan blowing full blast on me. And im STILL sweating! Makes me wonder if my body is trying to purge something. I hate not knowing whats going on!
  8. victoria

    victoria New Member

    Babesia... it causes sweats and fatigue etc ... also hard to test blood for. Not a bacteria or virus, just its own little organism, similar to malaria (same drug is used in fact). And/or... anywhere near menopause? Just a thought... do you have your swooning couch handy?
  9. Nanie46

    Nanie46 Moderator

    Please....NO STEROIDS!!! Steroids could cause lyme to go wild and you may never be able to recover.

    Please do what ever you need to do to find a LLMD and get a good eval for lyme AND coinfections like babesia, bartonella, ehrlichia, etc.

    Go to in flash discussion...sign up for free....go to seeking a Doctor board and create a post asking for a LLMD in OK.

    There are other people from OK on that board.

    Of course there are ticks and lyme in OK...ticks do not read maps or road signs and do not stop at state lines!!!

    Now are you starting to see why there are so many chronically ill people in the US??
  10. victoria

    victoria New Member

    one of my favorite things to point out is the map of Lyme disease in N. America, which includes Canada and Mexico. It's remarkable that the borders of the US are so beautifully outlined... such good border control it's truly remarkable. They should apply the same controls to people. HA!

    She didn't actually give you the prednisone, did she? I thought she was going to but didn't...

  11. Misfit101

    Misfit101 New Member

    Oh yes...she gave me the prednisone. But thanks to the warnings from the people not taking it. No way. If nanie and others (im so sorry i forget names) hadnt warned me id have taken it. Its what i initially thought i needed. And i take hormones tho they didnt help much with the sweating. Ive collapsed several times tonite already on the couch. All this info is overwhelming and frightening. But ABSOLUTELY NECESSARY. Yall are a God send in more ways than one. Loved the quip about ticks not being able to read road signs lol!
  12. Misfit101

    Misfit101 New Member

    Jam...i did ask her about oa and she said my symptoms were consistent for something else. I have arthritis in my low back...but even THAT is the least of my problems there. I gotta tell you...getting old sucks. And when you thought you could do the same physical work as any man out there...well you cant. You might get away with it in your younger years but you will pay dearly when you get older. I am my own worst enemy. Ive had positive results with the vit d3. Just feel better. Of course that was before i got slammed. The jurys still out on the GSE. I always appreciate your input even if i dont understand some of what you do. Im GLAD you talk to me like you would any other gf. I wouldnt have it any other way.
    [This Message was Edited on 05/26/2010]
  13. Misfit101

    Misfit101 New Member

    Something occured to me a little earlier. Anybody want to place bets that one of those vials was for an HIV test? Wonder if she woulda told me. Hmmm...
  14. karynwolfe

    karynwolfe New Member

    Good for you!!! Becky, is it?

    I'm so proud, if I'm allowed to say that. I'm glad you have an understanding doctor who is willing to work with you, she sounds like mine whom I've had for over a decade. And really amazed to see that you took the initiative to confront her about things. So many people just nod and agree once they get into the office...I know I used to do it...

    Please understand her not wanting to write a prescription for antibiotics: Ofen it becomes a battle with having to justify it to the insurance companies. And honestly, some go after the doctor's license for such a thing, without something solid--on paper--that could suggest exposure to Lyme. That's another reason why people just tend to leave it alone. And this is why we have the brave LLMDs (lyme literate medical doctors), and this is why they're so hard to find, and this is why you have to go to special Lyme organizations to get their information: If they're publicized, they risk everything, including the ability to prescribe any treatments.

    And just so you know, I got infected in a state where--according to the CDC--only ONE case of Lyme per year exists. I guess I'm just that unfortunate? No way.

    Do you know what kind of test she ordered? The ELISA is what they usually do, unless you specifically ask for a Western Blot, and the ELISA is useless. You can tell her this if she requested the wrong one--doctors appreciate the infromation (or at least ones like yours do). You can ask for copies of everything.

    "...accused the hubs of turning the thermostat up. Its on 68. Everybody else is freezing and im in my bedroom which is the coldest room in the house and have my table fan blowing full blast on me."

    Keep track of those patterns, Becky, they can point you to which coinfections (if any) that you have, because they hardly ever show up on tests. Make the thermometer your friend if you're having fevers. Lyme cycles every four weeks. Bartonella cycles about every 6-7 days. Babesia cycles every 4-5 days.

    So glad you didn't take the prednisone, it could be a lifelong disability sentence. It DOES reduce the inflammation, but because it does this by lowering your immune system, it's malproductive.

    There is one thing you do need to know that we may have forgotten to say, if you do indeed get prescription antibiotics, and you happen to indeed have infections. You will experience herxing (google it), and feel a lot worse before you improve. This is actually a "good" thing, however, because you would not herx if there weren't anything there to kill. The coinfections respond faster (and more violently) to antibiotics because they reproduce so quickly, but Lyme takes many months to get under control because of it reproducing only once a month. But any improvement, gradual or not, would be a blessing compared to where you are right now.


  15. victoria

    victoria New Member

    Spring is the season for ticks; Lyme Disease often misdiagnosed
    Local Lyme Disease sufferers describe the debilitating effects & lack of
    correct diagnoses
    By Jaime Garland, WPMT-TV, FOX Channel 43, York, Pennsylvania,0,3964455.story
    May 24, 2010

    YORK - 'Tis the season for ticks; bugs that can bite and transmit
    debilitating diseases. Lyme is the most well known, and with that comes
    other ailments like Cat Scratch Fever & even a form of Malaria.

    Members of the York Lyme Disease Support group are very familiar with
    the illnesses & the symptoms.


    "I see a lot of patients who've seen 5 or 6, 8 or 10 different doctors,"
    says Dr. Richard Daly, who has a family practice in York.

    Roughly one third of his patients never develop the telltale bullseye
    rash associated with Lyme Disease. In addition, their traditional blood
    tests come back negative.

    "I'll see very frequently that we test them & we can't find a positive
    test & I'll put them on a trial of medicines & see if they get better &
    very frequently they do," Dr. Daly says.

    That is the most important thing a doctor can do...

  16. Misfit101

    Misfit101 New Member

    Yes karyn...becky it is. To my friends. :) thank you for putting that info up! I remember reading here about herxing and thinking "ooo i dont want me none of that!" it makes sense tho. Im thinking about calling the dr ofc tomorrow and asking if shed go ahead and rx me the doxy she was going to prescribe. Dont know. I was reading some interesting info on okla lyme stats..1 reported case. It only went to 2008 but i know better than that. Dh knows 2 ppl from work now w lyme. Hes been talking to ppl too lol. Both were okie ticks. The site i was reading alleged that okla depends on tourist dollars and doesnt want to be known as a lyme state. Made sense to me. Lots of ppl come here for our state parks lakes etc. Tho i can think of better places to go. We have a park with a waterfall thats a big draw. Robbers cave state park is another one. Famous gangsters like belle starr and jesse james hid out there. So i guess they have a point. To heck with ppls health. Its all about the bucks.
  17. Misfit101

    Misfit101 New Member

    Sorry for the double phone will only let me do so much. I just want to thank ALL OF YOU for posting up information, links etc. You dont know how much it means. The more i read the more im CONVINCED i have at least lyme. At least. If its not lyme im a sick puppy. My sister and i were on the phone and shes m the mayo clinic web page and the NIH and even she thinks ive been infected. If you knew my sister youd know thats big. One question she asked me was about memory loss. I burst out laughing then told her about my electric fiasco. Then she tells me about bells palsy and i decided that wouldnt be an attractive look for me. We had some good laughs. Its not to make light of the situation...but its better than crying. I have a sneaky suspicion theres a ton of ppl here that would laugh with me! I love you guys so much. In the words of mr rogers "wont you be my neighbor?"
  18. Misfit101

    Misfit101 New Member

    If it were snowing id be crying real tears lol. Cold wx isnt kind to me. Come to think of humid wx isnt kind to me as well. Thank you for your well wishes AW...IM going to get to the bottom of this...whatever it is. Im still running a stinkin fever. . . . Was reading an interesting story about a wichita ks police detective who was bitten by an OKLAHOMA tick in 2009. No dr would pay any attn to him and this man almost died. He finally got his dx and treatment after over a year of being so sick and tossed aside by the medical community. Made me think of everyone here and their struggles. Really ticks me off!
  19. Misfit101

    Misfit101 New Member

    I gotta tell ya...i HATE snow. Where i grew up at it never snowed. Moved to michigan and got sooo excited at those 1st flurries in october. By january i was ready to shoot myself. I saw enough snow there to last me the rest of my life! Give me a good old tornado threat any day. At least they pass quickly enough. I had a friend in brisbane, queensland and i remember her talking about the heat and drought. Had to have all these water restrictions. They would have to sneak just to water the one little pitiful plant they had left. I felt bad for her. Sounds like its extreme climate wise in your neck of the woods!