Started Doxycycline for Positive ELISA, only after practically begging! Where do I go to the doc?

[Hope75]

Okay, so I called my PCP AND my neuro to ask, "what now?"  They would not respond, when the positive ELISA was sitting right there in my file for weeks!  So, I finally just made an appt. with my PCP so I could beg for treatment and/or the Western Blot.  He did not listen to me and swore that his nurse called me last week to start me on a 10 day course of doxy.  I said what phone #s do you have?  He read them back and they were correct.  I went home and double checked all phone messages, etc - NOTHING.  I told him I received no such phone call and was NOT on treatment and he acted shocked.  I was holding a copy of the results in my hand and he said "I HAVE a copy of that", as if to warn me to not hand it to him.  OMG!  I said I would like the Western Blot.  He informed me that he will wait until the end of the month after the doxy and then he will repeat the ELISA.  When I questioned again for the Western Blot from Cali, he said Labcorp could do it but he won't until I finish my antibiotics.  Heck, I've been sick for 2.5 years and I want to have the friggin' lab even if I pay out of pocket.  He has never acted this way with me!  What is it about Lyme that makes doctors freak out?!  

THEN, I make a little trip over to my neuros office and stood at the window, hands on my hips, asking why my FOUR phone calls had not been returned.  She looked at me in dismay and went behind a bookshelf that was definitely NOT soundproof and asked the nurse.  The nurse proclaimed, "WHO?  How do you spell her name?  I didn't talk to her but once."  Then she came up to me (hands on hips) with a confrontational attitude and said the docs had asked her about it and they never told her what to do - and that is why she hadn't called me back.  REALLY?!  Is this a Lyme disease conspiracy?!  I said I DID call, four times, and I talked to her only once, true, but I talked to TWO other staff members and once left a message with the answering service.  How is all of this my fault and how did I become a burden to my docs all of a sudden?  I am really PO'd, to say the least.  I asked when they would feel like they could give me a "decision".  She asked if I could come in for an appt. (not accomodate me right then of course - even though I just saw the neuro 2 wks ago about the same dang thing).  Another $20 co-pay down the toilet and not to mention TIME.  I go to see him this coming Tuesday.  Wish me luck people, I need it!

What do you all think?  I have no idea if I got bit, no rash, blah blah, but neuro symptoms for two years and a positive ELISA.  I am ready for IV antibiotics and whatever else they want to throw at me.  I'm game!  They said the doxy wasn't strong enough and they would start some treatment plan tues, but I am taking the doxy just as a starter.  Cant hurt, at least.  I think my neuro will have a good handle on it AFTER I got them to take notice.  I pray!

Thanks for any thoughts and also, could you send me (in a message) any LLMDS in the Southeastern areas?  I have heard there is one in SC that doesn't take insurance and there is one in VA.  Any input would be greatly appreciated.  If I get diagnosed or I'm pretty sure this is what I have......the Lyme naysayers/critics will hate to see my name, because I can really raise a stink if I need to :)

[gibsongal]

omg where to start.. what a mess.
patsy?If you read in the health pages there is an explanation of testing there that says the antibiotic challenge is to take the antibiotic for 4 weeks than wait 10-14 days to have the testing done.

my  doc i saw 1x,  an LLMD who does not take insurance, told me to take ceftn and plaquinil wait a few weeks and  during the course of treatment  then get tested..i left with a scripts adn a lab slip to go to labcorp. did that this summer

hummmm i asked 2x so i knew when to go get my test...IDK who to believe anymore and the more i obsess with all this i wonder if i even have Lyme and think the govn't is behind a conspiracy and the pharma and med community makes bucks on treating symptoms and making us go to a gazillion docs and tests when they could give abx in the beginning for 35$ !!!

i am just mad and tired of it all.. we all are. every day a new person joins here with the same freaking story!

my ID doc i have been seeing for 10 months says i do not have lyme.. but finally after all this time they are refering me for a neuro work up. i asked in August for an MRI..

do they not want us to get well?

[Ricobord]

I am so glad you got a doxycycline prescription! However, if you have already been sick for a month, there is a good chance that 1 month won't be enough. You might think you are well, but a few months later you might find yourself sick again, only worse.

Do whatever it takes to get refills or another round or two. It is worth WHATEVER it costs now. Late stage Lyme can be devastating. Trying to pay for your own late stage Lyme treatment can also be devastating.

[lstern0303]

I have been having unexplained illnesses. I took Elisa test and it was positive. Had to wait for a neuro appt for him to give me results. So instead of giving me antibiotics, he sends me for the Western Blot test. Its been a week and the nurse calls to tell me they got my results but she can;t tell me what they are - wth - I went to the dernatologist because I have an unexplained rash all over my trunk, so I tell him about this Lymes positive reading and he says do you want me to write a prescription for doxycyline I almost hugged him I was in tears. YES YES I have been suffering for a month with these unexplained symptoms. So just keep screaming and yelling and making a scene until they give you something!!!!

[Hope75]

I read this last night and was too sleepy to reply, and now I'm at work and have to be quick...thanks everybody - this is a great discussion.  I did get a list of 6/7 (?) LLMDs in my general area (within 6hrs drive).  I have been posting so much I don't remember what I've even said!  I go to my neuro tomorrow and I will update everyone.  Word on the street is that he consults with an LLMD.  Gotta go - thanks again!

[wonko]

Posters above have given the same advice and have made the same observations that I would.  

When I became more aware and concerned about Lyme, I went back to my doctor to discuss the issue.  My regular GP wouldn't order a Western blot for me after two negative ELISAs because she was "afraid of false positives."  She also refused to do a short trial course of antibiotics as I requested.

Yet at the same time, she previously put me on a 15 day course of oral steroids, which I feel was reckless and irresponsible in light of my lack of diagnosis at the time.  I also blame that experiment, which did bring a very brief reprieve of my symptoms, for the subsequent deep worsening of my illness and for my lost ability to work full time.

Additionally, all of the specialists I saw shook their heads "no" and immediately dropped the issue of Lyme.  (Though I don't recall a bite and didn't have a classic presentation or rash, I would still bring it up due to my lack of firm diagnosis.)  I was never diagnosed with anything, but had enough abnormal test results to be told again and again to "wait and see."  

Somehow, amidst the brain fog, a light went off and I realized that it didn't make any sense to continue to "wait and see."  From the time I first sought medical help for my illness in Jan '08, I had fairly steadily gotten worse, with symptoms becoming more severe and also spreading to more systems of the body.  I knew whatever was going on was already front and center, it was just somehow off the radar of the doctors I was seeing.

I am thankful that I did what JackieCalifornia says:  "Do whatever you have to do to get to a legit LLMD asap."  I do not believe that I would have been diagnosed or treated, at least not adequately, had I not taken a leap of faith and gone off of the beaten path.  I fully agree:  "If you don't do everything possible to get well, friends, think what continued illness will do to your earning capacity, not to mention your enjoyment of life."

I was sick for at least 1.5 years before my diagnosis, and now 3 months into antibiotic treatment I am starting to have brushes with normalcy.  I can't, nor do I want to, imagine what my situation would be like had I not decided to seriously consider Lyme.

I was honestly rather skeptical about it at first.  After all, I was given so many seemingly water-tight reasons for why I did not, could not, have Lyme.  I joke with my Lyme doctor when this subject comes up, he asks me how I feel about my diagnosis and I tell him I don't care about the details of my test results.  I know the standard testing failed for me, all that matters now is my response to treatment and my recovery.

(Not sure where this rant came from or if it applies to Hope75's situation!  Just me venting, again.)

[JackieCalifornia]

Do whatever you have to do to get to a legit LLMD asap.  The cost of lost time and delayed curability will inevitably exceed the $$$ it costs you to go to right doctor.

The longer you are till, the more entrenched the disease; thus the longer to cure, and the less chance of a complete cure (although I am a Pollyanna and believe that with enough drugs, probiotics, herbs and whatnot, I WILL be cured).  Never ever quit.

===================================================
Pardon me if I go off on a tangent, not directed at you, but at people generally about being sick and getting proper treatment:

I have a friend who doesn't have Lyme, but another chronic problem that bothers her everyday and makes her life a low-running misery.  She is seeing a doctor who is an idiot (I know, because he used to be my dr too), and she keeps seeing him because he is 'on our insurance' -- even though there is another doctor nearby that she has seen that she loves, who is on the ball, who doesn't just hand out the latest pharma sample, who doesn't just tell her to come back in a month.  But the Good Dr isn't 'on our insurance.'  I told her that the next time she thinks about going out to dinner or buying a new pair of shoes, take that money and put it toward an appointment with the Good Dr.  It's all a matter of priorities.

Unless you are utterly destitute, don't let money stand in the way of getting proper treatment -- insurance companies don't know who you are, just what they get from you in premiums and what they pay out to your doctors.  They don't care about getting you well and returning you to productive life.  Only you care about that.

Spend the money and get well -- nothing else really matters.  If you don't do everything possible to get well, friends, think what continued illness will do to your earning capacity, not to mention your enjoyment of life.

Take charge!

[patsy10]

If you read in the health pages there is an explanation of testing there that says the antibiotic challenge is to take the antibiotic for 4 weeks than wait 10-14 days to have the testing done.

[patsy10]

Great posts by Stephen898, SOONERMOM.  So true.  The money that is spent going from one specialist to another is staggering.   It would be so much less expensive to treat the real problems than pay these specialists for their misdiagnoses or no diagnoses.  I had a very expensive misdiagnosis that cost a lot of money with an unnecessary surgery.

[Stephen898]

I think what happens with some doctors is they follow a protocol on their laptops that is guided by your symptoms. There is no thinking outside the box. After that they send you to a specialist who looks at the one symptom they specialize in. So you go from one specialist to another trying to address every symptom Lyme throws at you. I went to a ENT for ringing in my ears. He told me everything was normal. I told him something is not right I have a numb face and stiff neck. He suggested that it maybe stress and I might go see a neurologist. I think this is how we get shuffled around from one specialist to another until you stumble into a LLMD,s office.

[SOONERMOM]

I think my positive western blot sat on my GP's desk for a while too.  The nurse kept saying that they hadn't received it and I called IgeneX back and they said he should have gotten it a long time ago...but said they would fax it over before my appointment.

SOMEHOW, when I went in for an appointment he had the original copy dated weeks before, folded up like it had been in an envelope.  I had been his patient for @ 6 years and never had any problems before all of this.  He didn't know what to say when we looked at the test results and all he could say was something like, "I hope  you know someday what is really wrong with you"....I had 7 positve IgM and 3 positive IgG antibodies to borrelia...CDC positive in fact.

I left the office with nothing....and called back and asked for doxycycline until I could find "someone" to treat me, and they gave me 30 days.

A friend of mine was recently told that her positive ELISA was a "lab error"..LOL

I am somewhat concerned that you will be taking your western blot right after finishing your antibiotics because it could blunt your immune response for the test.  I know you don't want to wait to take the test, but they usually recommend waiting at least 2 weeks after stopping antibiotics to do the WB...maybe longer???  This is also how some doctors get patients test to show more positive, and call it the antibiotic challenge.  

You can probably forget about your current doctors when it comes to really treating lyme disease.  They will probably say that it is all a false positive.  It is NEVER positive enough, they don't want to treat it because they know that it  isn't cured with the standard approved protocol and they don't want to prescribe outside the IDSA guidelines.

If you have had lyme for years, it is not going to be cured in a month or two.  

It is quite unbelievable, but if you get a copy of Cure Unknown it helps sort through all of the politics.  I would find an LLMD and  make an appointment, because there is usually a long wait. (you can ask to be placed on a cancellation list)

Hang in there and let us know what happens!

Stacey

[patsy10]

Please keep us updated on how your appt. goes.  I also wonder why  the medical profession tries to act like lyme does not exist.  It just causes people who are already sick to have more unnecessary stress.

[Hope75]

I finally did and I have one about three hrs from me too.  I have one that is closer, but his website looks sketchy.