Could this be a result of lyme

[Padro46]

Have been having lightheadedness and Back of the head numbing feeling on and off for 8 mos now,  The following is a list of test I have had, Will be going to see a neuro the end of this month any hope for me?

Up until Dec 07, I lived a robust life,  Smoked, Drank, ate whatever.  Then I began to have these symtoms to include Chest Pain, Dizzy, Lightheaded, Numbing on the back of the head, Minor ab Pains, Tired all the time.  At this point in my life (46) I did not even have a primary doc.  I found one he ran blood work and the only thing he could come up with was high Epsten Barr numbers, this was in Jan,advised he would see me again in 30 days. 30 days later same results. But to quite me I have had the following test.  Full cardiac work-up, Colonscopy/Endoscopy (2) C.T. Scans 1-AB and 1-Heart/Chest   2-Chest X-rays, 2-MRI (c-spine and brain) Tons and Tons of blood work, ALL NORMAL.  My issue are still the lightheadedness and minor chest and ab disconfort.  My primary says the EBV numbers are of no further interest and should not be causing my problems.  I have been to a Infectious Disease Doc and 2 Heart Docs, No one can help me.  I need any thought as to what to do next to help my problems.   P.S. Have not smoked since Jan 15th Blood was just drawn on Thursday to check for Lyme,  I understand this test is not very accurate.  Any suggestions,  I am also taking Dr. Jernigans protoclol for EBV does not seem to be helping.

[bruce622]

Man! does this sound familiar...Western Blot IGG/IGM test is- as far as i know- the most accurate to date.they claim a 90% accuracy rate for lyme.

[Nyxie63]

Unfortunately, most docs will run an ELISA first to check for lyme.  This test has between a 30-70% chance of a false negative, depending on the lab that's doing the test.  That's a lot of people being missed!

Like Bruce822 mentioned, I highly recommend getting a Western Blot done.  There are a few labs that are better than others for this.  The "gold standard" is Igenex.  MDL isn't too bad either (and they take insurance).  The Igenex IgG and IgM western blots run a little under $200 for both tests.  It's out of pocket (they don't take insurance) and well worth it.  You will need a dr to order the blood tests and receive the results.  If you can't get your GP to do it, then stop at one of those Urgent Care or "doc in a box" walk in clinic places.

Even if the western blots come back as negative, if there are lyme-specific bands showing, you have lyme.  You can also have lyme if there's nothing showing (seronegative western blots are not uncommon).  Many, if not most, people who have had untreated lyme for a long time don't test positive until they've been on the right regimine of specific antibiotics for several months.

Lyme is a clinical diagnosis!  While positive test results are nice, just because your test comes back negative doesn't mean you don't have lyme.  

I don't know what you've read so far, but here's some basic info:

http://www.cassia.org/essay.htm  - READ THIS ONE!!!!

It's very long, so take it in small bites.  This is what first really opened my eyes to the possibility of my own lyme.

http://www.lyme.org/otherdis/ld_symptoms.html

http://www.lymeinfo.net/medical/LDSymptoms.pdf - Scroll down to the chart and go from there.

A clinical diagnosis can be done by a lyme-literate MD.  This is a doctor well-versed in lyme disease, as well as all of the resulting illnesses and autoimmune disease.  They do a complete differential diagnosis, lots of testing, and can determine what you're dealing with.  Bear in mind that most aren't cheap and don't take insurance.  If you need help finding a doctor in your area, please let me know.  I can put you in touch with resources to help you find someone in your area.

And here's some info on chronic EBV infections:  http://www.cebv.org/

I'm not saying you have lyme, but considering your symptoms and the lack of the medical community's ability to diagnose you, it's certainly a possibility.

Please keep us posted. :)

[Padro46]

yes please send me a list of llmd;s in my area,  leave in North Texas.  also do you think a Nuero will be more versed on Lyme have a appointment with one at the end of the month,  I also have the kit from Innex,  have not used it yet waiting to see what the standard Lab test from last week shows first, dont look for much there.

[bruce622]

can't post docs' if you go to those sites that Nyxie63 mentioned you'll understand why. if you go to the web there are 2 sites that can help you get directed to LLMDs.
www.turnthecorner.org.
www.lymenet.org.

Nyxie63... great post!

[Padro46]

Thanks Do u think the Nuero can Help?

[Padro46]

P.S.  What do you think of the Jernigans Protocol?

[bruce622]

i had a bad experience w a neuro re:LD, there are others on this site w the same story.it would seem, that most neuros, at best, have little knowledge w LD.i think there are a higher % of rheumys that are knowledgeable.....LLMD. I've been referred to an infectious disease MD... no appt. yet. I was referred last week.
As for jernigans protocol; I haven't looked into any of the protocols yet.I've been waiting to get dx'd before i do any kind of protocol.there is the chance that i might be suffering from something aside from, or besides lyme.I would think that an LLMD should tailor protocols and treatments to the individuals specific needs.I've been doing homeopathic remedies;not for treatment, but to lessen symptoms.

[Nyxie63]

I happened to luck out with my neuro.  He's one of the few who actually screens his patients for lyme during their differential diagnosis.  He doesn't treat it but at least he's aware of all the neuro funkiness it can cause and doesn't dismiss your symptoms.  Your mileage may vary.

Will PM you with a site where you can enter your zip code and it'll bring up a list of docs near you.  If you don't find one in your area, try another state near you.  Most lyme docs prefer to stay off the radar, so to speak.  We patients tend to be highly protective of our docs, as they're the only ones who believe us and will treat us according to symptoms.  There have been lyme docs who've been singled out and charged with various infractions and some have even lost their licenses.  We want to avoid that.

As for Jernigan, I haven't looked into it enough to have an opinion.  Going to see what "standard" treatment will do for me over the course of a year or so before considering herbal protocols like Jernigan, Cowden, and/or Zhang.

Right now, I'm on a heavy-duty antibiotic, antmalarial, antiviral protocol.  It's kicking my butt.  My doc's very aggressive with treatment, although not everyone's body can handle the amount of meds and resulting toxins.  He also has me using quite a few supplements to help support, repair, and detox while we're trying to kill the bugs.

Btw, I was just dx'd this past March after dealing with "something" for 30 years.  I have clinical dx's of lyme, babesia, and bartonella, as well as elevated EBV and HHV-6 IgG titres.  I'm also being treated for mycoplasmas and c.pneumoniae.

Unfortunately, getting a diagnosis is only the beginning.  There's a long journey ahead.  What we get out of that journey, whether our health improves or not, is entirely up to us.

[Nyxie63]

Thanks!

And sorry for the typo of your name in my first post.  Dang fingers aren't what they used to be. ;)

[Padro46]

Thanks for all the help, Is the EBV a stand alone or was it caused by the Lyme or vice versa,  Are the symtoms I listed above in regards to nuero issues something you have dealt with, The only thing that has shown up for me so far is high EBV numbers.  But maybe the neuro appt I have on the 22nd will shed some light on this.

[Padro46]

Just like yall said Blood Test Neg. found out today   Yipee   Now I have to find a LLMD or a least a Doc that knows EBV so I can find out what the heck is going on with me