Igenex Testing In USA When You Have No Doctor - Please Share Your Creative Ideas - Need Testing ASAP

Hi Everyone......

I won't summarize my story here (believe me, you will thank me later!) but I am a newbie and you can catch up on what my daughter and I are going through in my "complex mom/daughter lyme" post.

All of the great feedback from that post has led me to bite the financial bullet and get Igenex testing, starting with my 21 year old daughter who shows more of the telltale symptoms - though both of us are enduring autoimmune disease nightmares.

The trouble is we live 2000 miles apart and though she will follow my lead, I really need to have things set up in advance for her. I can't throw my girl under the bus, so to speak, in such an anti-Lyme biased medical world. I want to set things up and tell her what will happen from point a to b to c.

We don't "do" conventional medicine anymore. The closest thing we have is that she goes to an affordable clinic when absolutely necessary - there is no primary doc - you see whatever doc is in that day.

I have this protective mother, nightmare image of her walking in with her Igenex kit, asking a doc to sign the lab requisition AND being approved to use their lab for who knows what cost, etc. -- I just don't see the planets aligning in this scenario....I just envision doors slamming and lots of tears from the experience.

So I am asking you to PLEASE share your experiences on how you got Igenex testing done when you didn't have a doctor, just like my daughter and me - both good and bad experiences (so I know what to look for). I am not rich and am paying out of pocket to combat BOTH of our illnesses, so I can't throw money around...I need to make good choices.

Maybe some of you bypassed primary care docs completely and used another practitioner like a chiropractor, etc? Please don't forget to throw in the lab part of this....

Again, please explain, in newbie language, how you accomplished getting your Igenex test done from start to finish, if you were like me and had zero medical support to turn to. Any creative idea would be so appreciated.

I so wish Igenex was like ZRT labs - or had a company you could use to get testing (like when I've used LabCorp for more simple tests through sites like privatemdlabs, etc). Honest, if we aren't using insurance and paying out of pocket, how come we don't have the right to pay for a test ourselves...it is our bodies. Welp, I digress....sorry. I just feel like I have to get through the guard dogs at the gate to care for my own body...a very disturbing image for me.

Thank you!
Robin

Email me. I might be able to help.

Yeah, I went to an urgent care clinic. My primary care is through a military facility and they are very strict with their labs. I also knew my primary doctor would not sign off on it since she did not suspect lyme and already did the elisa test and it came back negative.

I called up a few urgent care clinics around me and asked if I could meet with a doctor and get a blood drawn done and send it myself to a private lab. Out of the ones I called, only one agreed. Don't let them talk you into getting the one they offer. That is what the lady tried to tell me after she reviewed everything.

Good luck and hopefully it works out!

JRAYH21

Thank you for sharing your experience. A good "heads up" that out of all of the ones you called, only one agreed. An uphill climb for sure.

I feel foolish even asking but I am assuming, while searching, it is very important to find a clinic with an IN HOUSE LAB? Do you stay with the sample from start to finish (if I understand timing is everything and it must be shipped asap) and/or even mail it fedex yourself?

We're also having trouble getting a doctor to sign off on the IgeneX testing. The "top" infectious disease doctor (total arrogant jerk) we took my sister to absolutely refused. We were assuming that the only doctor who would be willing to sign off would be an LLMD, and we are still in the process of selecting one. We'll probably end up going to Dr. E in Jackson NJ, simply b/c she's the closest. I think we are delaying things a bit b/c every time we take my sister to a doctor it ends badly for us. At this point, I honestly think my sister is a bit traumatized by all of the doctors visits. And though she has a low IQ due to Down Syndrome, she's smart enough to know that NONE of the doctors have ever helped her.

The lab I use here in Canada - gets paid for the blood draw...they don't care if it's a lab req from Igenex...they are just drawing blood, etc....that's their job.

I don't know if LabCorp would be the same. I would assume so?
If not, hopefully someone can give you a name of a lab that is 'independent'.

I thought I would have to phone Fedex to pick it up, but the lab took care of it.

You will need to check off the test(s) you want on the Igenex form. So the best one to get with limited funds is the Lyme Western Blot Igm and IgG. Test #'s 188 and 189.

So I called "Any Lab Test Now" and they had no problem with the Igenex test blood draw...they charge $25 so not a big expense and said they will follow instructions, help with FedEX prompt pickup....sounded great.

HOWEVER - they won't, of course, sign the requisition....so here we go!

Got 1 of the 2 problems solved....now I have to wander the streets of a state I am not from begging for a signature...can just see me going door to door, haha. This will be hard, for sure.

I think the whole Igenex test thing would have made an excellent Seinfeld episode...."one little thing" turned into a story of chaos!

The doctor who signs the request gets the results I believe. Igenex would be able to answer that better though. They could have a 'release form" (for lack of a better word) that allows you, the patient, to be the one to receive the results instead.

The Dr. does get the results.

If the Dr. is willing to sign the lab req, he/she should be willing to let you have the results.


What about a ND? Could you go to one who is willing to sign the lab req? The one I went to did the blood draw, too.
Now, it was expensive, though...I think the visit was $250 (included the blood draw and having it sent off via Fedex)

I just phoned the ND's and asked if they were able to do the blood draw for the Igenex test.

Trying to offer some comfort here - testing is pretty inaccurate anyway. Many false negatives, and even the CDC says that we are supposed to be diagnosed by symptoms:
"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods." - of course, that's about all they got right, but they did get that right!

www.cdc.gov/lyme/

The other thing you can do is to start trialing Lyme herbs. I am assuming that using a LLMD is out of the question because of finances and your traveling? I'm not sure about your daughter's situation though.

So have you thought about what treatment you would like to use?

YES!! Please do use every possible option of finding a LLMD that will work with your daughter and her finances! I have 3 listings for Illinois, if you will send me an email, I'll be happy to share those with you - but I have no experience with them. These are just LLMD's that I have found on my own because it killed me that I could do anything to help those looking.

They each seem to have their own prices they charge - some being quite expensive and others, not so much, at least once you get past the initial appt, so always be sure to ask about follow up appt cost. They could be a lot less expensive. Also, find out if there are charges for phone calls or emails from the doctor - each doc has their own schedule for that as well.

Here is the list I post for all those searching for a LLMD again - and of course you can start a new thread with the title something like "Looking for LLMD in Central Illinois".


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/



I'm glad that you are looking over the different protocols - There are quite a few out there that people are having success with.

​
And for starters (you can never go wrong with this!), how about you and your daughter making sure that you are eating just as healthily as you can (little to no processed foods, lots of veggies and good protein, no sugar) - and detoxing!! I earned being teased about always saying detox, detox, detox - because it's literally that important for us. We can always help suggest easy (& inexpensive) ways to detox.

I have an answer for you, but I might get yelled at. Having said that we are all trying to get our doctors to listen. It took me three months of arguing with my doctor to get him to sign the order for the test from Igenex, and he wasn't happy when it came back positive for an active infection because he was emphatic that I could not possibly have Lyme.

My pediatrician was no problem. I discussed it with her and we decided if I tested positive my son should be tested. Then we'd figure out how and if to treat him.

So there is a company called True Health Labs that will let you request different lab tests online. The way it works is you pay for the test and a doctor in Atlanta orders it. At least the one's I've requested have been signed before a doctor in Atlanta. They may work with other doctors in different areas of the country.

You pay for it and then if it requires a blood draw you look up places to get the draw. If it is something else like urine or hair tests they send you a kit.

Under the tests drop down they have a section for Lyme and then the choices are Igenex or standard tests. So you can go there and order the test. The drawback is you are not working with a doctor but many of us aren't. They do have the option to have a doctor go over the results with you for an extra fee ($30 I think).

A few things though, if you are ordering a blood test make sure that the order they send you (via email) has the right list of test. When mine was entered, the person put in the wrong code and the order was wrong. I didn't see it until I got the results. They issued me a new order, but I had to have a second blood draw. The order also didn't come with any special instructions and it required a 48 hour turn around which was explained on the order so I ended up having to go back another time.

Another thing is that I was sent here by one of the veteran members, Pirouette. We connected on a different site. I'm one of those that have had symptoms for 35+ years, so i stopped creating antibodies a long time ago. She told me that some docs put their patients on a month of antibiotics to force the immune system to create antibodies. She said some people (don't remember who) use Olive Leaf Extra for the same purpose. It has anti-microbial properties.

She suggested taking it for at least 4 weeks because it takes that long for Lyme to replicate. I started at a very low dose (one twice daily) and was immediately slammed. It knocked me on my butt and I developed fever blisters which I haven't had in 5 or 6 years. In discussions with Pirouette and Traveler we thought it indicated Lyme and once it started being killed off by the Olive Leaf it stirred everything else up giving the Herpes Virus a chance to be top dog.

When I got my test results, it was a positive for both CDC and Igenex for a current infection. Personally, I think it was worth trying. Pirouette suggested Gaia brand. It's definitely available at Whole Foods and seems to be a brand a lot of stores that sell herbals carry.

I hoped this helps.

Kim

Kim....as Girlie said, "why would you get yelled at?" :)

So much of the mess and lack thereof of getting effective medical treatments in the world today, in my humble little opinion, is due to people being afraid to speak up - or worrying what peers will think/do - or being "punished" in some way for speaking your own truth. You can find the common denominators of human ego, politics and money (again, my humble little opinion, haha) at the root of much of our medical care complaints.

We are all responsible for our own decisions....so I want to thank you for putting this information out there...it is my decision what to do with the info....you aren't responsible!

I am too new here to even know what the issue would be with your words, but I just wanted to thank you for sharing.

For someone like me, I may decide that the marked up cost through the company you list are more affordable then trying to pay a doctor for a consult just to order the test....a very helpful suggestion I will add to my considerations.

The olive leaf has been mentioned by others and I appreciate your suggestion. Sounds like a very good/valid idea for many. I am so worried about risking my daughter's autoimmune attacked body at this point (and mine, to be honest) with Hashimoto's, Celiac and a dozen inflammatory things going on that I think I will just roll the dice this first time and let the universe decide. I can certainly test again in the future, if necessary...and maybe could try olive leaf when a little more healthy - cleansed...just in a better place physically. So I do appreciate the suggestion! I just looked it over a bit more and had that little red flag inside me telling me now isn't the time, even if it decreases the chance of a positive western blot, etc.

Anyway.......thank you Kim!

Robin