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.  

Thursday, May 19, 2011

Financial Assistance For Lab Testing

In my last post, I had mentioned LymeTap and how I had never heard back from them.  Well it ends up I did hear back from them, I just never got the message!

After a nice conversation with someone over at LymeTap and I am happy to relay their information in hopes that other people can get assistance for Lyme & Co testing at any CLIA approved lab.

You must qualify financially for the program.  LymeTap will reimburse you up to 75% of the cost of the test.  You must submit an application, the first page of your most recent tax form (1040) and the requisition form for the testing signed by your doctor, among some other requirements.

Click here to see if you meet the eligibility requirements.
I am trying to get my application together but I don't have ink in my printer!  Hoping to get that together ASAP!  I will be requesting a co-infection panel testing from Igenex.

Next post will be about my latest doctor appointment at the new doctor I went to on Monday.  GREAT APPOINTMENT!

Wednesday, May 11, 2011

Lyme Labs That Accept INSURANCE!

All I have ever heard about in regards to getting accurate Lyme Disease testing is IGENEX.  I paid $450 for my Lyme Disease test through them cash.  Boy did that hurt.  I tested negative through the standard labs & also negative through Igenex in regards to having built up antibodies for the Bd.  But my PCR was positive for Lyme Disease through Igenex & the health department was alerted.

I have been talking about how I cannot afford the co-infection panel through Igenex.  It runs about $650-$850.  So therefore I have never treated co-infections & here I am, still house bound & sick nearly 2 years later.  I was given info on a program called

Friday, May 6, 2011

New Doctor?

I have an online friend that sees a doctor much closer to where I live (an hour each way & a lot less traffic).  The doctor is located in downtown San Diego & he accepts my insurance.  When I called to ask questions, I was told his specialty is general medicine, but he "specializes" in natural medicine.  DING DING DING DING!  I don't think my current doctor can help me anymore.  I love him.  He is truly a good person, but I have been leaving there disappointed every month that nothing is switching up in my treatment & we are not treating co-infections.

I stopped my IV Rocephin about 12 days ago (I should have written it down).  I keep meaning to re-start a daily journal.  I am so spacey lately, I forget to take my meds, flush my PiCC line, take my supplements, do my sauna, bathe, cook healthy meals, etc.  I am just not taking care of myself and it is very hard to do so.  Once I head downstairs for the morning, I rarely get off the couch.  At least I am not in bed, right!?  I have no energy, I am irritable, I am sad & lonely, don't feel like I have a support system, I have no energy.  I feel like every time I get on the right path I get the rug pulled out from under me.  I feel so defeated.  A lot of it has to do with my treatment (or lack there of).  I am pretty much miserable (just being honest).

Got some blood work results back today.  I am low in Globulin and Vitamin D.  I just have Vitamin D insufficiency, not deficient.  But I know the numbers should be on the high end.  I have no idea what the globulin means.

I have A-Bart & A-L Complex on the way from BioResource, should be here Monday.  I hope to start that & see what happens from there.  I am still taking my oral Biaxin because when I was off of it for 1 1/2 weeks, I had some symptoms return so....  Ugh.  So frustrating!

I just don't know what to do anymore.  I hope this doctor (May 16th) gives me something that I have been missing.  When I feel good.  Everything is good.  No matter what.  Wish me luck!

Oh P.S.  I started my Lyme Defense Tea (Buhner Tea) again today from!  I know I felt better when I was on it before.  But I was doing better in general back then.

Wednesday, May 4, 2011

CANCELLED: Dr. Klinghardt Teleseminar

CANCELLED:  I just received word today that the seminar has been cancelled & postponed.  Dr. Klinghardt was double booked & they hope to have him re-booked soon!!!

Where there is hope, there is healing

I am excited to be able to announce another LymeHope teleseminar......not just ANY teleseminar, but DR. KLINGHARDT!!  I have been trying to arrange this since January.  Dr. Klinghardt is a very busy man.  This is a rare priviledge to have him with us.  Please pass the word along.  This is short notice; I got the final word today.  We need to move quickly to get the word out.  Dr. Klinghardt will be sharing the latest, cutting edge information.