Can you still be Diagnosed with Lymes if all blood tests come back Normal ?

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NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 11/30/2008 12:35 PM (GMT -6)   
I had an Elisa, Western Blot, PCR, and ANA yesterday. Not sure where it gets sent. I'm a little confused as some say to see an LD MD even if your tests come back negative. Some say they have a positive test yet can't find an MD to treat them. How is this ?

A positive test is a positive test. Are you guys saying Dr.'s don't recognize Lymes even with a posaitve test and that some Dr.'s will treat you even with negative tests ?

Please give me some clarification.... Desperately seeking help over here...

Gary

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/30/2008 12:52 PM (GMT -6)   
Absolutely. Lyme is a clinical diagnosis that is based on symptoms and supported by tests. yeah

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/30/2008 1:00 PM (GMT -6)   
hi gary,

as far as I do understand lyme and all the testing it`s said that in case your immune system is to weak to produce antibodies, tests may come out negative, but you may have the disease nevertheless

that is why the lyme- docs (some of them at least) go for the clinical symptoms;
If the symtoms get better or go away with abx that usually fortifies the assumption of lyme.

some docs really do not treat lyme even with a positive test; if igg is positie, they say this could be from an old and already healed infection and its only telling that there are still antibodies around;
I think all this has a lot to do with the breakdown of the believe that we can heal all infecctions by just taking some abx.

Is a drastic reality that mankind is able and willing to send spaceshuttles to mars but is not able or willing to try cure diseases like lyme;

Hope you will get good treatment as soon as possible!

NURSE GARY
Regular Member


Date Joined Jul 2007
Total Posts : 29
   Posted 11/30/2008 1:15 PM (GMT -6)   
Does this hold true even for the Western Blot ? Isn't this test suppose to be the holly grail of Lymes testing ? BTW, thanks for your post, now I understand. I'm just wondering if a 6 mos. course of IV Antibiotics could cause harm if you tested negative and were treated anyway.

In other words, the risks lies that if antibiotics are not sucessful, then you probably have something else, and then god for bid you need say IV Ceftriaxone for another infection you get down the road, it would be ineffective. Is that why docs don't like to treat negative tests ?

Once again,

Gary

Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 11/30/2008 1:16 PM (GMT -6)   
Nothing new to add to the previous posters, other than an endorsement and a personal anecdote. My lab tests were negative for Borrelia for over a year after I'd become acutely symptomatic. It was only when I began to support my own recovery with a better diet and immune response supplements (like CoQ10 and Vitamin C for example) did my tests become positive.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/30/2008 2:06 PM (GMT -6)   
Gary,
First get your blood work done at a good lab without the strict and false and primitive standards of the CDC. get your blood work done at a lab that is not controlled by our gov.
Try IGENEX.com
Then find a LLMD in your area who will respect your test. Don't even waste your time with a Dr. who does not listen to you. Ask the forum lady about Dr.s in your area. Or post your search on here for Dr.s in your area that understand Lyme. Good luck! You have come to the right place for info.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 12/1/2008 8:41 AM (GMT -6)   
Gary, another diagnostic tool for lyme is the herxheimer reaction which you get shortly after starting ABX. If you do not have lyme, you will not have any reaction to abx, or if you have something else that responds to abx, you will immediately feel better (such as strept throat). In contrast, if you have lyme your symptoms will worsen when you start abx. This is because your liver and kidneys cannot process out all the toxins released by the dead bacteria and it overwelms your system. I believe ABX are a safe way to go because of this reaction. Usually it takes days for it to happen, sometimes weeks, but I was sicker in hours. As the load of bacteria is killed and cleared out your your system, you begin to feel better.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/1/2008 12:08 PM (GMT -6)   
NURSE GARY said...
I had an Elisa, Western Blot, PCR, and ANA yesterday. Not sure where it gets sent. I'm a little confused as some say to see an LD MD even if your tests come back negative. Some say they have a positive test yet can't find an MD to treat them. How is this ?

A positive test is a positive test. Are you guys saying Dr.'s don't recognize Lymes even with a posaitve test and that some Dr.'s will treat you even with negative tests ?

Please give me some clarification.... Desperately seeking help over here...

Gary
You should have your LD and co-infection testing done by Igenex lab.  If you are symptomatic and test negative, I would still see a Lyme literate doctor to either rule in or rule out LD.
With LD it doesn't matter if you test positive.  I was sick for 13 months... the LD test (that I requested from my orthopeadic) came back EIA positive and Western Blot negative, of course this test was done by Tpa. Gen. Hospital (which isn't exactly a great cornucopia of Lyme knowledge).  I took my positive EIA LD test and ALL OF MY SYMPTOMS to an infectious disease doctor and was YELLED at that "I did NOT have LD... there is NO SUCH THING as LD in FL... take all your little notes and tests and go up north where they will treat ANYBODY and EVERYBODY WHO THINKS THEY HAVE LD... DO YOU THINK IV ABXS ARE FUN?".... etc., etc.  Her staff drew 8 vials of blood.  I called 23 times for my test results before just going there and demanding them.  I was EIA positive and IGM positive and IGG negative.  I have NEVER heard from this doctor since. 
It took me 4 months to find an infectious disease doctor who would treat me.... his first question was, "Why hasn't anybody treated you for Lyme disease?".. and then he wrote me out an rx for Doxycicline.............. I WAS SO P!SZED OFF!  17 months of suffering for a friggin' bottle of Doxy????????  I have no idea where the hostility comes from with ths disease.  My shrink and family all thought I was nuts and that there was no way I was being treated so poorly by the medical community... which just reinforced the thoughts and diagnosis that it was "all in my head".  Finally my husband started going with me to doctor appts. and he saw first hand what I had been dealing with all along.  I eventually was tested through Igenex and was CDC positive (EIA positive, IGM positive and IGG positive with more than 5 bands)
So, to answer your question, yes most doctors won't recognize ANY positive LD test... most will be hostile to you... you will have to search and find a LLDr.... you will probably travel further than you ever have for medical treatment... you will pay more than you could ever imagine and if you have ins., you will spend every ounce of semi-painless yet brain fogged time fighting with them to pay for your treatment.

We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/3/2008 3:55 AM (GMT -6)   
I was keeping this a secret until I had more information.... but I did post a little about this on another LD site a day or two ago.
 
When my husband went to a fraternity reunion at Vanderbilt a few months ago, he ran into an old friend who is now a doctor.  He owns Dialysis centers and Hospitals (big $$$).  He doesn't see patients, but does a lot of research and can make referrals to the "best" doctors in the world, etc.  Anyway, he requested all of my records... I spent an entire day gleaning all my paperwork down to a stack of 123 pages.  My husband put everything on a disc and sent it to him.  I emailed "my story" along with a few links (like to Under Our Skin, AG Blumenthals investigation, the IDSA response, etc.)  I have updated him twice, once when I was receiving 10 weeks of IV Rocephin and just yesterday with an update of my current oral abx's and other prescriptions - and a link to a pretty technical medial study on Lyme disease - that I just got from another site. 
 
Anyway, he emails my husband with a response indicating that my case is "elusive" and seems to fit the definition of Chonic Fatigue Syndrome more than Lyme disease.  I immediately told my husband that I disagree.... but in fairness, I researched "CFS" a little bit..  Lyme does share a lot of the same symptoms of CFS... but I didn't have all of the CFS symptoms and I have almost EVERY LD symptom, plus I have an Igenex LD test that is CDC positive.  And, the sites I visited about CFS even said you had to rule out other infections INCLUDING Lyme disease!
 
So, my husband emails him back and says something like "I really appreciate you looking into this.... I really respect your work.... but, what about my wife's LD positive Igenex test?  Lyme disease is the only thing she has ever tested positive for."  (I have other tests where I am EIA positive but WB negative, EIA positive and IGM positive, but IGG negative, and then the Igenex test which was CDC positive, I have since tested IGM positive on a few more tests - so I don't really call the Igenex test my ONLY positive test).
 
The drs' reply "

It’s hard to say why the single result was positive.  It’s certainly possible that it was a spurious result.  As I said, the diagnosis has been elusive. 

."...... and now I'm like What the F%&K ???.
 
So now, this dr. is going to send my records to some other dr. in Europe for review.  My husband told me to just "let it go" and see what the other dr. has to say.  I guess I'm going to let him send my records along.  I mean he is doing us a favor by looking into this.... but jeeze, it feels like I'm back at square one - educating the doctor about LD so that they don't slap the wrong label on me - haha.
 
I'll let you all know if anything comes of all this.   rolleyes shakehead eyes smhair shocked smhair eyes shakehead rolleyes


We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 

Post Edited (JELAINEP) : 12/3/2008 8:17:29 AM (GMT-7)


studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 12/3/2008 7:23 AM (GMT -6)   
JELAINEP said...
I was keeping this a secret until I had more information.... but I did post a little about this on another LD site a day or two ago.



The drs' reply "I can't explain the anomoly of one positive LD test."...... and now I'm like




I'll let you all know if anything comes of all this. [img]/community/emoticons/rolleyes.gif[/img] [img]/community/emoticons/shakehead.gif[/img] [img]/community/emoticons/eyes.gif[/img] [img]/community/emoticons/smhair.gif[/img] [img]/community/emoticons/shocked.gif[/img] [img]/community/emoticons/smhair.gif[/img] [img]/community/emoticons/eyes.gif[/img] [img]/community/emoticons/shakehead.gif[/img] [img]/community/emoticons/rolleyes.gif[/img]



My wife's cousin called his brother-in-law who is a doctor in Appleton Wisconsin. He does not treat for lyme. Her cousin explained her 5 year history and he said she clearly had third stage Lyme's. Is that so difficult??

The IDSA still says there is no such thing as chronic Lyme's.

Claude

Post edited: No references to violence or illegal activities, please, even if they are meant as a joke.

Post Edited By Moderator (alfers) : 12/3/2008 8:33:21 AM (GMT-7)


studeski
Regular Member


Date Joined Dec 2007
Total Posts : 62
   Posted 12/3/2008 7:27 AM (GMT -6)   
Almost forgot, the first two paragraphs on the CDC diagnosis page:

Lyme Disease Diagnosis

Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans. For detailed recommendations on serologic testing, click here.

When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness. Not all patients with Lyme disease will develop the characteristic bulls-eye rash, and many may not recall a tick bite. Laboratory testing is not recommended for persons who do not have symptoms of Lyme disease.



Claude

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 12/3/2008 7:59 AM (GMT -6)   
nefferdun said...
Gary, another diagnostic tool for lyme is the herxheimer reaction which you get shortly after starting ABX. If you do not have lyme, you will not have any reaction to abx, or if you have something else that responds to abx, you will immediately feel better (such as strept throat). In contrast, if you have lyme your symptoms will worsen when you start abx. This is because your liver and kidneys cannot process out all the toxins released by the dead bacteria and it overwelms your system. I believe ABX are a safe way to go because of this reaction. Usually it takes days for it to happen, sometimes weeks, but I was sicker in hours. As the load of bacteria is killed and cleared out your your system, you begin to feel better.
Neff, a herx reaction happens when any biotoxins are being processed, so in fact, anyone can experience a herx with any bacteria die off.
One herx's when killing yeast from the body as well.
And what one thinks may be a herx to abx, could just be a side effect from the abx.
 

The world breaks every one and afterward many are strong in the broken places

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