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Posted 2/24/2011 6:10 PM (GMT 0)
Funny how I wound up here after 2 years.. and about 20 doc.. even a visit to a major medical clinic. I'm ANGRY!! I finally pushed for a western blot and got one hit on a lyme specific band 23. Have all the symptoms.. now waiting for apt with LLMD. Per CDC you need 2 bands for lyme.. so I don't even know what to think?? Going for another blot test in am and testing for coninfections and more general lab work... per a infectious disease doc. My symptoms

Started June 2008 1 month after returning from Mexico.

Tachycardia spells.. higher resting HR

dizzyness

skipped beats

then a bout of headaches

then buring upperback pain and chest wall pain (now at it's worst)

Headaches gone

Cant stand long need to sit down

eye sight all dim

strange pains here and there

severe anxeity

I even went througna FREAKIN heart cath.. cause of all this!

I'm a MESS!!!! And my 11 year old was dxd with lyme in Jan. He's doing great!

 

Post Edited (tickedoff2011) : 2/24/2011 11:23:44 AM (GMT-7)

Posted 2/24/2011 7:15 PM (GMT 0)
Hi Tcikedoff!!!
Welcome to our forum!!! I am really very sorry to hear of all that you have been through for both yourself & your son!! So glad to hear that your son is doing well!!! Congrats on that point!!! yeah

I do have a question though, why is it funny that you found us after 2 years?

I am sure glad you found us!!! Even though you are not just starting your journey with Lyme & possible co-infections, it would be very helpful to you if you would read through & refer

to often the thread that sits at the top of our forum titled, "New to Lyme?...Start here!!" as it was put together by the members here, so it has a great deal of helpful info & some really great links!!

An LLMD will recognize that band 23 is the Outer Surface Protein (OSP) specific to LD. YOu would do well with getting your treatment from an LLMD rather than the ID doc, as it is the IDSA's (Infectious Disease Society) position that chronic Lyme does not exist, that it only takes a short course of abx

(I believe it's 28 days) and you no longer need any more treatment!! Although there are always exceptions to every rule, so there are a few ID docs that know how to properly treat a LD patient.

Once again, Welcome to our forum!!! We all look forward to getting to know you through your posts!!!!
Posted 2/24/2011 8:10 PM (GMT 0)
Thank you Traveler. I can't say as though I'm real happy to wind up here.. lol. But hey.. I now know I'm not CRAZY as some said I was. Like my symptoms were all some form of somantinzation.. imagine that? Yeah.. my son has early dissemintaed.. he is lucky. On a strong course of abx for at least 3 months mixed with vitamins and probitotics. his facial tick was gone after 2 days of treament.. he's repsonding well. As for me who knows? But.. I am going to see a LLMD.
Posted 2/24/2011 8:22 PM (GMT 0)
I'm really happy to hear of your son's improvement!!! And am equally glad to hear that you are all set to see a LLMD!!!

A few suggestions?? When you go to your appt. take a note pad & pencil, or even better a recorder - a lot of cell phones now have that option on them. There's going to be a whole lot of info at each appt., most likely.

From here on, from any doc that runs tests on you, be sure to get your own copy of the results. I even have a cd of the images of my brain!!!

Get yourself started on probiotics. I prefer to use kefir, but most use a really good probiotic from the health food store - you'll find the really good one in the refrigerated section.

Start detoxing now. We collect all kinds of toxins from every day life, not to mention all of the different kinds of meds we Lymies (an affectionate term, I assure you!) end up trying/using.

When is your appt? Please be sure to let us all know how your appt goes!!!!
Posted 2/24/2011 8:27 PM (GMT 0)
Welcome and best of luck to you. Run don't walk away from infectious disease dr. They do not know nor treat lyme properly. Mine was actually really nice but didn't know a thing about lyme. LLMD is the way to go and don't just settle there either, make sure you like him or her and they work with you and are willing to listen and learn.
Posted 2/24/2011 11:34 PM (GMT 0)
Yes.. so far so good with my son. We see his peds LLMD in March. Now.. I have an issue. The LLMD I contacted is far to expensive. I am looking for one in the NY area. Need help!
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