posted
What happens when all of your tests are negative?
I tested positive in May 2010 and was treated with doxy for three weeks. Since then, I have asked my then dr and two others to be retreated and have been denied.
Now my symptoms have escalated and I have subsequently been tested for all other kinds of things. I've had multiple MRIs, EMGs, NCs, blood work over and over again and most recently a full tic panel for everything. Everything comes back normal or negative. I have copies of every test and result.
I have finally landed an appt with a Lyme specialist in Southern CT - two hours away - and all body parts are crossed that he will treat me according to my symptoms rather than the test results.
Btw, when I say Lyme specialist it means he is an associate in one of the groups of drs pm'd to me through this website, which is why I am hopeful, but still scared senseless that I am once again wasting my time and spinning my wheels. He is my last hope before I am forced to go out of my insurance network and pay out of pocket, which would create a very hard burden for me and our family.
Is it just a crap shoot? If they treat me for symptoms will it just be the same old same old? Are there specific things or proof I should share that may pursuade him to treat me aggressively rather than with a three week course of doxy and nothing more?
I'm compiling a list of symptoms and tests and have chronolized the last three years, etc. I am hopeful that will be enough. Any advice?
Thank you in advance.
-------------------- Tested positive for Lyme/western blot in May 2010...received standard treatment of doxy for 3wks. Whoop dee doo...symptoms came back in full force following tkr in January 2012. Posts: 46 | From Connecticut | Registered: Sep 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Sugarjoe-I know exactly where you're coming from. I was in the same place back in April.
So many docs/specialists/tests all saying I was normal. Except for I was anything but.
Thank goodness for CanLyme connecting me to a support group in my area who pointed me towards an awesome ILADS ND.
Sugarjoe-sounds like you're on the right path with an LLMD in a few months.
Even if the diagnosis is NOT LYME, at least you will have seen someone who can give you an answer based on experience, not a textbook or a sunstandard set of criteria like an IDSA I'd doc.
But I suspect it will be lyme, as your situation sounds very similar to mine.
Hang in there! The wait is worth it-I am making slow progress. Each step forward, there's a bit more hope on the horizon.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
My appt with the supposed lyme specialist (he is infectious disease) in on October 29th. I'm on pins and needles!
In the meantime I am continuing with my herbs and supplements.
-------------------- Tested positive for Lyme/western blot in May 2010...received standard treatment of doxy for 3wks. Whoop dee doo...symptoms came back in full force following tkr in January 2012. Posts: 46 | From Connecticut | Registered: Sep 2013
| IP: Logged |
posted
Were you in early stage or later stage when you receivedc your three weeks doxycyclin?
If in early stage probably you WERE cured.
quote:Originally posted by sugarjo62: What happens when all of your tests are negative?
I tested positive in May 2010 and was treated with doxy for three weeks. Since then, I have asked my then dr and two others to be retreated and have been denied.
Now my symptoms have escalated and I have subsequently been tested for all other kinds of things. I've had multiple MRIs, EMGs, NCs, blood work over and over again and most recently a full tic panel for everything. Everything comes back normal or negative. I have copies of every test and result.
I have finally landed an appt with a Lyme specialist in Southern CT - two hours away - and all body parts are crossed that he will treat me according to my symptoms rather than the test results.
Btw, when I say Lyme specialist it means he is an associate in one of the groups of drs pm'd to me through this website, which is why I am hopeful, but still scared senseless that I am once again wasting my time and spinning my wheels. He is my last hope before I am forced to go out of my insurance network and pay out of pocket, which would create a very hard burden for me and our family.
Is it just a crap shoot? If they treat me for symptoms will it just be the same old same old? Are there specific things or proof I should share that may pursuade him to treat me aggressively rather than with a three week course of doxy and nothing more?
I'm compiling a list of symptoms and tests and have chronolized the last three years, etc. I am hopeful that will be enough. Any advice?
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
A lot of possibilities with unknowns - you tested positive, but how long had you had Lyme?
Co- infections: Bartonella, Babesia, are 2 main players that now seem to always travel with Lyme, and need specified treatment.
You tested negative recently- on what kind of test? Standard ELISA test? Very unreliable test, see state of VA's new law about it.
I hope your upcoming appt. goes well- but it is a sad fact, one of the worst facts, that in order to get the truth and proper treatment
with Lyme disease and co- infections, we have to pay for it outside of insurance- if we are lucky enough to find a Lyme Literate Medical Doctor
in our area, or have the financial means and capability to travel.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wait, your doc is an ID doc? I'd run. Go to www.lymediseaseassociation.org. They will email you some names. I would only see an ILADS doc if I were you. They are cutting edge when it comes to lyme.
I saw a top ID doc who was absolutely clueless about lyme. They can't help it, that's the way they were trained, and they are simply following idsa guidelines, which happen to be old, out of date, and flat out wrong. Sadly, the docs don't know it though, and their minds are closed.
Also, three weeks of abx does not cure early lyme (myth). It comes back.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
This guys practice was one of the docs emailed to me through this website. Supposed to be decent. I have two others as backup but they aren't in my insurance so I'm seeing this guy first.
Thanks again all.
-------------------- Tested positive for Lyme/western blot in May 2010...received standard treatment of doxy for 3wks. Whoop dee doo...symptoms came back in full force following tkr in January 2012. Posts: 46 | From Connecticut | Registered: Sep 2013
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Not to dis whoever sent you a name but, I would still double check to make sure that he is an ILADS doc. Whoever sent you the name may not be seeing an ILADS doc. The website above will identify him if he's ILADS.
Also, most ILADS docs don't take insurance. That is because the insurance companies tell them what they can and cannot prescribe to their patients. This hurts the patient, because he or she won't be getting the best treatment (what is truly needed). Lyme docs know this, so the majority of them simply won't take insurance (especially the good ones, IMO).
Best wishes to you!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic