Monday, May 30, 2011

LymeTap, New Doctor, C3a & C4a tests

Thanks to LymeTap!!  I now only need to come up with $195 for co-infection panel testing through Igenex.  The co-infection panel requested by my new doctor was $780.  I have a lyme friend that just got reimbursed for 75% of their tests as well.  This is a great program!  I just had my blood sent off to MDL labs (see previous post) on Thursday for their panel of Lyme & Co's.  I know of people that have been negative at one and positive at the other.  Since I am sick & need to find out, I opted to get tested at both labs because if one doesn't come up with something, hopefully the other one will.

I can't wait to start treating co-infections.  My new doctor, I have seen him twice.  One for initial consultation (takes my insurance THANK GOD & THE UNIVERSE).  Great first appointment.  Was not rushed what so ever.  He sat down & answered all of our questions (my husband & I).  We even learned a few things!

For instance, did you know that natural sources of melatonin (non-synthetic) helps your body to create it's own glutathione?  Also helps you sleep.  So a double whammy.  Here is what the doctor prescribed (OTC).
I started taking it, he wants me to start at 2 drops at bedtime & work my way up to 10 drops per night under my tongue.   It makes me SO sleepy!  I have been on various brands of melatonin for years.  This is the ticket.  I am up to 3 drops per night.  Tastes like vanilla extract.

  • My globulin (protein) levels are low, so he wants me on Whey Protein.  This is the brand I opted for even though there are much better brands out there.  I trust Source Naturals & I am on a tight budget.

This is a good price for two 16oz containers.  I bought 1 container at for $21.27 but should have got 2 & saved myself $4.  This one has FREE shipping.  I have it in my Amazon cart for next time.

  • My Vitamin D levels have gone up a pinch since I started supplementing.  My doc says they are to be ideally in the 60's.  I think I was a 32.  He wants me to supplement with 10,000 IU's of Vitamin D3 & also 10,000 IU's of Vitamin A.  But it needs to specifically be Retinyl Palmitate, not Beta-Carotene.  
  • We upped my dose of Low Dose Naltrexone  from 3 to 4.5mg.  I have been on 3 mg for since treatment started back in October/November 2009.  My new doc likes to up it after a while.
  • Nystatin once a day.
  • SUPREN Oral Drops (homeopathic medicine) for my weak adrenals (chronic tiredness, loss of appetite & gastrointestinal complaints).

Another thing my new doctor did was suggest co-infections (DUH!).  He will treat without testing, but since I had the advantage of the labs that accept my insurance & the funding from LymeTap, we are going to wait & see.  He has a plan.  If I have Babesia, we will treat that first.  But we definitely suspect Bartonella so we will treat that with Rifampin.  He wanted me to do Levaquin (it's about to go generic) but I have heard a lot of horror stories.  Then we will do 1 month of Diflucan alone (weakens the bacterias).  Then I will go back on IV Rocephin & pulse Alinia (cyst buster but also treats babesia) 2 weeks on, 2 weeks off.

Of course this all depends.  This plan was at the first appointment & then he did a proper CD57 through LabCorp (my old doc was using Quest NOT BEUNO).  My CD57 has always been high.  Between 202 & 223.  Very high, therefore the thinking is that my lyme is in check, just need to treat co-infections.  LabCorp is the place to get your CD57 tested.  I have told my past doctor this many times, but he "doesn't use LabCorp".  Well, my CD57 is NOT 223, it is only 32!!!  HOLY LOW CD57!!  That's why he (new doc) called me back in for a follow up appointment.  So change of plans.  Still waiting on blood work from MDL & Igenex (when I can get that test done), however, we will probably be treating with the Rocephin at the same time as the Rifampin and maybe Alinia.  We'll see what he says when results come in.

He also did a C3a & a C4a blood test through LabCorp (preferred lab).  The LabCorp I went to did the wrong test, they did C3 & C4.  So I have to get it re-done.

Here is the deal with the C3a & the C4a
LabCorp no longer sends the frozen plasma to National Jewish (NJC) in Denver.  They have also changed the test codes.  This is as of April 25, 2011.  
The test numbers for the new tests are as follows:
Complement C3a – 004220
Complement C4a – 004330

Please make sure you let your doctors know this.  You will need to call LabCorp in advance & request that they send a test kit (or kits) to whichever LabCorp lab branch you will be getting your blood drawn.  The new collection tubes contain EDTA/Futhan, which limits formation of C3a and C4a after collection.  I requested mine on Friday so I will call first & see if they got the kit in Tuesday.  She did say it may take 2-3 days.  Since this is a new test.  I would make sure you tell the person drawing your blood how it is to be handled (they probably won't like this, but I will be nice about it & explain that I had it done wrong the first time).  I will call first & make sure the test tube is "chilled" before they draw my blood.  Then the lab technician is to add something to the test tube immediately & send it frozen.  This is very important.  Here are the instructions.  They are very specific & this is new testing, so maybe even print instructions & insist it's done correctly.  
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