Quick Question

[eann]

Hi there,

I have a question about Igenex lab forms. I haven't received my kit in the mail from Igenex yet, but I go to see my doctor tomorrow. I am not sure exactly what all I need from her to get the Western Blot done.

I downloaded the form from Igenex off the internet. Does the doc need to fill that out or does she just sign it? Will she know the needed codes or do I need to bring them from the site?

I thought I read she could just write it out on a prescription form. Can she just write western Blot? Does she need IgG and IgM specified?

I am a little nervous about asking for the test as the protocol is to run an ELISA and if that is negative to stop there. I had the ELISA done a few months ago and it was negative. I don't think she will mind, but not sure.

I'm going to talk to her about seeing a lyme specialist, as I have the forms from Dr. C now. There are some tests he wants me to bring, so I am going to need to ask her for those too.

I have an appt. with Dr. C at the end of April and I don't plan on going back to this doctor again between tomorrow and then, so it would be great to get it all taken care of tomorrow.

I don't leave until 2 PM, so if anyone has time in the morning to give me a quick answer, I really appreciate it. All seems a little confusing so far.

Thanks, Ann

[eann]

OK, I am looking at Dr. C's forms and he tests for hormones, specifically estradiol, progesterone, cortisol, aldosterone and testosterone. They state it is a blood test. I wonder if I could get that done through my regular doctor also?

Then there is a test for hypercoagulation, the MOCHA panel. It is a blood test, of course. Does anyone know if it makes any difference if I get these tests through my regular doctor.

Sorry I ask so many questions, but getting as much done through my insurance, as possible, is of course a lot cheaper for me. I don't know how much my doctor will feel comfortable ordering, but it's worth a try.

Thanks again, Ann

[Maz]

Hi Ann,

Probably your best bet is to put a call through to Dr C's office in the a.m. (hopefully they are open on President's Day?) and ask them about the specific advance testing they want you to have run and how they want it done through your local doc. Kim may also see your posts and be able to fill you in further, as she's been through all this, herself, as have a few others of Dr C's patients here who may also be able to help you out. 😉 

Mostly when folk have the IGeneX labs run, they get the basic Western Blot IgM and IgG run…these are test numbers 188 and 189 on the lab requisition forum. All that needs to be done is to check off those tests and to fill in any patient info needed yourself (docs don't like new forms they have to figure out, so the less work they have to do the better)…the doc then signs off on it, where applicable, on the forms. When I originally got my kit (several years ago), there were additional forms I had to fill in, myself, to detail my symptoms and any diagnoses (in my case, RA). IGeneX holds onto your blood sample for a month or two, so if any further testing is needed, it can be done later. Doing it this way – just ordering the basic WB – may save your pocket, particularly if your tests return clearly positive for Lyme on the basic test. If they don't you still have the option of further testing. That said, this may be something you should also check with Dr C's office to be sure this is all he specifically needs in your case.

If your doc is resistent to having the IGeneX labs run, perhaps you could just ask her to humor you? Sometimes that approach works. 😉

Hope one of Dr C's patients here will chime in with info on his MO for you. Let us know how you get on tomorrow pitching this to your doc.

Peace, Maz 

[Kim]

Ann,

Dr. C. is very thorough and knows your immune system couldn't handle the Lyme infection because it crashed on many levels so he would like all sorts of tests run.  He also realizes these tests are costly and testing for all of them can be unrealistic.  Once he talks to you and is able to do an evaluation from your history he will prioritize the order of which tests are most important and will work with you to have them run at home through your network labs, etc., if possible.

The hypercoagulation test he insisted on for me could have saved my life.  My blood vessels had become hard with a buildup of collagen in the linings and on top of that my blood had become very thick and sticky…….perfect storm for a stroke.  Nothing is going to heal with poor circulation, which mine surely was.  All of that is history now, thanks to a very astute doctor.

Take care……kim

p.s. Don't stress out over the forms now or try to pre-test before your appt, just wait until after you talk to him.

Your local doc only signs the form and has to agree to receive the results, you fill out the rest.  Have that done before you have the blood drawn, and once that is done pack up the samples and the forms and take directly to UPS, no later than Wed.

[Trudi]

[user=1962]eann[/user] wrote:

I am a little nervous about asking for the test as the protocol is to run an ELISA and if that is negative to stop there. I had the ELISA done a few months ago and it was negative. I don't think she will mind, but not sure.

I had a clinical diagnosis of Lyme–the bulls-eye rash being one of them.  I was negative for the ELISA.  The Igenix came back positive for both a present and past infection–albeit, not CDC positive.

Good luck,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[eann]

Thanks everyone,

I will stick with the Western Blot today. I didn't know Dr. C would run the tests through my network labs, that's great.

He wants some routine tests that I have current and will get copies of today.

My doctor has really been very kind and given me access to a lot of different specialists. Don't imagine she will have a problem with it. Just stressed I guess.

Ann

[eann]

Hi everyone,

The appt. went great. I was running a fever, so that helped to focus on the possibility of some sort of infection. I told her about the limited response I had to doxycycline.

She responded that doxycycline was one medication they used for lyme disease.

I told her about my appt. with a lyme specialist and asked her to sign the form for the Western Blot test. She was glad to sign and filled in appropriate codes so the insurance would cover it.

She asked the name of the specialist I was going to see and when I told her Dr. C, she said she had heard of him. She wants me to have him send a consultant report, so she can be kept up to date.

She ran a thyroid panel and a UA, both requested by Dr. C. I already have a CBC and CMP through my rheumy, who I see next month. I can get copies of these from her.

Still waiting for the test kit from the lab, no mail today because of the holiday. The only thing I am still uncertain about is whether I need to go off of antibiotics for a couple of weeks before I get the blood drawn for the Western Blot. Maybe that info will come with the test.

Another interesting conversation we had was about thyroid medication. I had to change from Armour Thyroid to Levothyroxine because they aren't making any more Armour. She mentioned that she had a lot of patients that she was having to switch over and said she wondered why they stopped making it. I told her my pharmacist was not sure why either, but I wondered how profitable it was because my script only cost about $3.50 per month.

She said she wouldn't be surprised if another drug maker had bought them out because it was so cheap. She said there are a lot of politics in medicine and companies try to eliminate the competition. She said when patents run out, drug companies will pay other companies not to make a generic, so they can continue to charge high prices.

Just thought that was interesting, coming from a doctor.

Ann

[Parisa]

Eann,

It got to the point where my pharmacy wasn't carrying any Armour either and I really, really didn't want to go on to Synthroid as I had done well on Armour (although not so well in the last few months as I think their reformulated brand wasn't as effective).   I called my naturopath and she called into a local compounding pharmacy that carries dessicated thyroid.  I had my new prescription mailed to my house in less than two days.  I had to pay out of pocket but surprisingly it's only a little more than I would have paid with a co-pay.  I hope the levoxy works for you but if not keep in mind the compounded versions.

[mschmidt]

Eann,

I am also getting a compounded version of dessicated thyroid through my rheumy.  A 2 month supply of it is $50, which is cheaper than my co-pay of $55, and it's mailed directly to my house within a few days as well. 

Maria

[Cherie]

I get a years supply of levothyroxine for $38.90. Not bad.

[Author]

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