Getting a test(IGeneX) done from primary physician/rheumatologist/infectious disease doctor.

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Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 34
   Posted 10/12/2017 12:23 PM (GMT -6)   
I have never gotten an actual diagnosis from Lyme(2 negatives from two-tiered) test.

But due to knowledge about the disease and many scary stories, when random symptoms occurred I started panicking and immediately diagnosed myself with Lyme(which is probably a very stupid idea, but hey, better safe than sorry) and I started Buhner's Lyme Protocol. I never looked back, meaning, I had convinced myself that I was sick. Up until a couple of weeks ago, where my friend confronted me and told that it was a very stupid idea.

He mentioned all of this could come from Somatic symptom disorder, anxiety, stress etc.

Now I really want to find out whether I am carrying Lyme or not.
_______________________________________________________________________________________

I'm in contact with a llmd 4 hours away, since she's the closest one.

But to be honest, I would much rather prefer, getting the test done with my insurance. I have called numerous offices about sending the blood test to a private clinic, but they all say no.

Has anybody succeeded, and if so, how did you do it?

This is what I'm calling to tell them

"I have been experienced various very weird symptoms that might point to Lyme disease, due to the fact that I lived next to a forest up in Maine.

My question is: Is it possible to run a test that gets send to a private clinic in California, who specializes in this specific disease.

They need a blood sample and a signature from a doctor."

Especially since I'm keeping all of my symptoms are very limited because I take Buhner's Lyme protocol.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26474
   Posted 10/12/2017 12:46 PM (GMT -6)   
If all you need that Dr. for is a test...then you could say - you had a known tick bite...that may help


Also, clarify that all you need from them is a lab req signature and blood draw ...and then it's sent to Igenex.

I would keep it short - ask if the Dr. is willing to sign a lab req so you can get a blood draw for Igenex lab in California. You had a tick bite and now subsequent symptoms that could be lyme disease.



BTW - do you have the Igenex test kit?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 34
   Posted 10/12/2017 1:04 PM (GMT -6)   
Okay, I'll try that.

And maybe even mention EM-rash?

Yes, I ordered it one month ago, but desperately gave up looking for a doctor, I didn't found it necessary since I was/am functioning so well, psychically. Mentally is another story though, with all this anxiety and paranoia, I do get a rash every now and then, and my body temperature can be low, especially around my knees.

But I'm working out hard in fitness, due to injuries I got years ago with a personal trainer and taking the sauna afterwards with a hot shower, then switching to cold. That might be the reason.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26474
   Posted 10/12/2017 1:42 PM (GMT -6)   
Chris12321 said...
Okay, I'll try that.

And maybe even mention EM-rash?



Yes...whatever you need to do to get a test.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 34
   Posted 10/12/2017 2:24 PM (GMT -6)   
Great, thanks!

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 10/12/2017 2:28 PM (GMT -6)   
I would follow through with the LLMD appointment. I have read that they will help you figure out what is ailing you if not lyme/ tick borne disease complex.

Waiting lists are long for LLMDs usually.

You should set an appointment. Save money and continue to treat in the meantime. If the appt gets closer and you can't afford/ don't need then cancel.

I remember some of your posts from a few weeks back. I almost reached out to you to ask for follow up. I think you are on the right track here.

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 34
   Posted 10/12/2017 7:56 PM (GMT -6)   
Fortunately I can get an appointment already on Wednesday, and you're right Missouri, it's better to be on the safe side

A good thing is my injuries are being treated very well by my personal trainer so my diet is on the point as well!

Haven't been drinking a single drop of alchohol for 2 months and I used to be a bartender!

I really do appreciate your concern Missouri! How is it going with your treatment if I may ask?

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 32
   Posted 10/13/2017 9:38 AM (GMT -6)   
Pretty good so far. I started treating in early August. Started antibiotics first, then hormone replacement as an adjunt therapy about a month later. My first month (on Ceftin) was amazing. After about 10 days on Ceftin my energy levels were up. My leg cramps mostly gone. Then I had one FULL week with no twitching!

This was amazing to me because:
At least every hour of every day for the past two years I had a twitching eyelid / eyebrow / leg / tongue for TWO YEARS STRAIGHT

Month 2 I started Zithromax per my protocol instructions. My symptoms started creeping back a little. I don't think Zithromax was doing aything...

Month 3 I started Flagyl per my protocol instructions. I think I started having some mild herxing. It seems that about 2 hours after taking my Flagyl dose I get a little bit tired. Not exactly sure what a herx is so I am not sure. Maybe Flagyl causes some drowsiness I don't know.

I am a very scientific and skeptical person by nature. I am still not 100% convinced I have a borrelia infection, but all this improvement I am having is convincing me I did acquire something from that blasted tick attachment.

My symptoms in order of quality of life interference-

fatigue - I was struggling with this so much before treatment. Since treatment I have been doing better at work and at home with family stuff. I do not have to drag myself out of the house as much.

malaise - I was addled with an internal discomfort that is hard to put words on. I might try to describe it as an upwelling and build up of frustration / dread / and discomfort. I know it sounds mental but I assure you it is physical. I call this symptom the feeling like crap or feeling sick symptom. I have only ticked that box in my symptom chart 16 times in the last 72 days. Formerly I was experiencing almost daily bouts of this feeling.

cognitive - focus, memory, attention. seen much improvement here

anxiety / depression - much improved since treatment, not gone, but better

exercise intolerance - have not ticked this box on my chart since treatment

dizzyness / wooziness - only a handful of days since treatment used to be almost daily

tingling burning numbness pain- this symptom is still hanging around, but not as impactful on my job as it used to be.

crunchy joints - mostly my knee and neck, some inmprovement, but not gone

double vision - some improvement, but not gone. used to be every day, now seems to bother me about twice a week.

leg cramps - much improved

twitching - see above, much improved

different color perception in each eye - I have not ticked that box on my chart since treatment began.

HAHA wow short book written out here. Kind of got carried away. Just me actually putting this out there is a perfect example of what I would not have done 2 months ago when my mind and body were so addled.

I am moving forward with a cautious optimism that these improvements and gains will be sustained.

Best of luck to you. E-mail me if you have any questions!!!

Chris12321
Regular Member


Date Joined Jul 2017
Total Posts : 34
   Posted 10/13/2017 5:35 PM (GMT -6)   
That is amazing, I'm so glad to hear you're doing much better!

I have set up the appointment for Wednesday next week!

Finally getting this figured out once and for all!
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