Looking backwards

I have been so busy looking at the lab results since Saturday morning that the numbers started to blur. Since I'm a Number's Girl, I decided to get organized and look at all the numbers. So I pulled a pile (we're talking HUGE pile) of papers and started sorting them. Doctors Receipts, Lab Reports, Insurance Papers, Symptom Papers, etc. I had already sorted some a little over a year ago into two notebooks. So I punched holes into the latest papers and put them in the notebook.

One of the tabs I have is "My Symptoms." Now really I don't have a whole lot in that section because I keep everything on my computer, but I did have a few papers printed out. However, there was one page that caught my eye. It was August & September 2008. It all started on August 18th. I had a simple PICC Line bandage change. By the next morning, there was pus all under my bandage and the bandage came up. I had only had my PICC line for a month. I was anxious that I was getting an infection already. I went in for another bandage change on the 19th.

I wrote, "On the 26th, I got lost going home. I couldn't think straight. I was extremely emotional and cried often frustrated with my limitations." The next day my blisters were healing and dried out with the new bandage regiment. My arm was great for a few days. I thought I was in the clear. On September 2nd, I had my IV Glutathione and a dressing change. My arm looked wonderful. All of the blisters had dried out.

I wrote, "Dead skin easily came right off as M cleaned the area with alcohol. Noticed right away upon arriving home that it was itching. Later that evening it started hurting and was very itchy." It was at that time that I tried to go to sleep, but woke up in pain from the itching. I attempted Benedryl, heat and ice to stop the itching. However, it just wouldn't stop. I begged my husband to change the dressing at one in the morning. I got about 2 hours of sleep and when I woke up my dressing was covered in pus. I kept an eye on the area, but by 9:30 there was moisture under the dressing. I had to rush to the office for a dressing change.

By the time I got home (only 30 minutes later), it was already leaking. I went back later for another test and got a third dressing change for the day. I remember that day. I honestly thought I might die from an infection. I thought I was about to lose my picc line after only having it for a little over a month. The next day I went back because my gauze was wet again and an appointment was scheduled for the hospital for hte following day. I just knew that September 5th would be the day they would pull my PICC. I just knew that I would no longer get any treatments. However, the doctor allowed me to keep it in and gave me instructions on cleaning and a new kind of dressing for my picc line.


***

This is why I don't want to look backwards. I had so much trouble with my PICC line. Allergies get more severe with time. If I was that "allergic" to the solutions then, what makes me think that this time would be easier? I know I'm jumping the gun, but it was in January when I was told if certain lab works didn't improve significantly that I would need IV treatments. Those numbers didn't improve hardly at all. I'm a little worried, but trying not to let those worries get the best of me.

Blood work update

I asked for you guys to pray that my blood would be drawn easily. I will say that it was a difficult process, BUT today I had a miracle. Before I left the house, I drank over 60 ounces of water and then had more once I arrived there. I used a heating pad on each arm and patiently waited. My arms were examined and then I was left to warm again. One tourney on each arm to find the best possible site. There was a bunch of feeling, confused looks and finally she marked my arms in two places with a pen. She continued to look and feel. Finally decided to take a jab at it (pun intended). I took in a deep breath and was very verbal in my love for her when she got the needle in and the vein didn't collapse.

Now this is where things get tricky. Carefully holding the needle/pressing veins/putting tubes on to fill each tube for testing, she managed to get everything she needed for my tests. Now in the past, after about a 1/2 tube ... the needle has to be pulled and we go through the process again. However, today .. TODAY.. March 10, 2010 ... My fabulously skilled friend in the field of Phlebotomy was able to draw my blood in ONE STICK!

SO please pray for the results. I need for all my lab work to be in normal range. I would rather not have any more needles for the next year. :D

Follow Up Appointment

I would suggest that most Lyme patients have other "issues" that can cause symptoms to arise. These other things for me are Nutrient Deficiencies, Adrenal Weakness, Low Normal Natural Killer Cells, Heavy Metal Toxicity, parasites and potentially low iron.

When I got to my LLMD the first time, we discussed the markers for Lyme Disease. I had joint pain in unspecified areas (it jumped around), fatigue & malaise, sleep disturbance, memory loss,
history of tick bite with bulls eye rash and a positive response to antibiotics. In February of this year, I got a CDC positive test result in the IgeneX Western Blot IgM. In the next two weeks, I will be having another test to see how LabCorp views my Lyme tests. The state of North Carolina only thinks that you have Lyme Disease IF a "normal" lab pings positive results. They also want the results within 30 days of the lab AND I seem to recall that they prefer both IgM and IgG to be CDC positive. So I'm crossing fingers that my LabCorp test will ping a positive result.

I've been taking an enzyme called Nattoserrazime. It's a blend of two potent enzymes which is used for cardiovascular, anti-inflammatory, respiratory and immune support. The benefit to this is that it supposedly helps ward off bacterial infections and supports immune health. I am also on EDTA. EDTA binds to metals in the body and helps you get rid of them. It binds to even good minerals so in order to ensure that it's not taking out too many good minerals I will have to be taking a "Trace Minerals." However, I have to make sure that I take it far enough away from the EDTA or it will just be wasted money (IE it will bind to the Trace Mineral and take IT out of my body instead of any heavy metals). I will also be taking Curcumin (Ker Kume In). It's believed to also have an anti-inflammatory and antioxidant effects. It may stimulate the immune system as well. Lastly on the Lyme front, I will be taking Paracide Juglans. This stuff is NASTY! I don't know exactly what it does, but I do know that it also helps kill parasites.

Because of all of the above, I will be having a nutritional panel taken the same day as the Lyme test. EDTA will be a 2 month supplement. Parasides will end as soon as I finish the bottle (*yeah*). Since the beginning of my treatment, my adrenal cortisol levels have been consistantly going down. This is NOT good. So they will test my cortisol levels to see where they are and I will continue addrenal support.

Last time I was tested, my Natural Killer cells were in the low end of normal. I am to order something called Low Dose Naltrexone. Originally Naltrexone was invented to help drug and alcohol addicts. Well it became clear that it seemed to help immune functions and a while back a doctor studied this and realized that in a very small dose ~ it helped improve immune functions quite a bit. Low Dose Naltrexone has been used successfully in Cancer and HIV/AIDS patients and more recently they've been using it on those with bacterial infections (like Lyme Disease). I would be taking 4.5 MG of this LDN at bedtime to help raise my natural killer cells. (I believe that the dose they use for addicts if 50 mg .. so you can see it's truly a very low dose).

Because my Chelation proved that I had some heavy metals, I will be having a test to see if it has caused any damage. This test will be done about the same time as my blood work. We're also going to really check out my Ferritin levels because some symptoms I've been having the last few weeks have been indicative of Low Iron levels. I will start Iron supplements as soon as my blood test has been completed.

On my supplement list:

Nattoserrazyme
Adrenal Cortex
Cod Liver Oil
Curcumin
EDTA (total of 2 months)
Immuzyme
Liver Drainage
Methyl B12
Total B
Vitamin C
Paracide (finish bottle)
Ultraflora
Iron Plex
Trace Minerals
I have more, but those are on my list sent home today!

Tests coming up: (August 19)
CBC
Comprehensive Metabolic Panel
Cortisol
Ferritin
Natural Killer Cells
Lipid Panel
Parathyroid
Vitamin D (25)
Zinc Plasma
CD 57
Lyme IgG and IgM
Several types of Urine testing.
Spectracell Nutrient Testing

Then & Now

So I wanted to do a stare and compare from May 07 to February 09

The left set is from May 07 and the right set is from February 09

I will BOLD the ones that changed for Stronger
I will not do anything to the ones that stayed the Same
I will Italicize the ones that got weaker

++ 18kDa: ++
- 22kDa: -
-** 23-25 kDa: +
- 28kDa: -
++ 30 kDa: +
-** 31kDa: -
-** 34kDa:-
IND** 39 kDa: IND
IND** 41 kDa: +
- 45kDa:-
- 58kDa:-
+ 66kDa:-
- 73kDa:-
- ** 83-93 kDa: IND

Three got stronger. All three that got stronger were a ** number
Two got weaker, but one that got weaker was still a positive. The one that remained positive, but got weaker ... was a ** number. The other one that got weaker was not a ** number.

Now here is the IgG. Again things on left are from May 07 and the ones on the right are from February 09


- 18kDa: -
- 22kDa: -
-** 23-25 kDa: -
- 28kDa: -
+ 30 kDa: -
-** 31kDa: IND
-** 34kDa:-
-** 39 kDa: IND
+** 41 kDa: ++
- 45kDa:-
- 58kDa:-
- 66kDa:-
- 73kDa:-
-** 83-93 kDa: -

Again, three got stronger. And all three were ** numbers. Only one got weaker and it was not a ** number.

So in all .. a total of 6 bands got stronger. All 6 were ** numbers. Only three got weaker, but one of those three was still a positive. And the other two were not ** numbers. (IE meaning they aren't really all that important).

So grow antibodies grow!

I am CDC POSITIVE for Lyme Disease

The important announcement I have to make is self explanatory. I am CDC positive for Lyme Disease for the IGM results. The "sample" test I showed you .. was MY test.

IGM is indicative of a current infection
IGG is indicative of a current infection or a past exposure or a past infection.

MY TEST RESULTS:


IGENEX IGM RESULT: POSITIVE
CDC/NYS RESULT: POSITIVE

18kDa: ++
22kDa: -
**23-25 kDa: +
28kDa: -
30 kDa: +
** 31kDa: -
** 34kDa:-
** 39 kDa: IND
** 41 kDa: +
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: IND

For the Igenex test results to be positive, two or more ** numbers have to be positive.
For the CDC test results to be positive, FIVE of the bolded numbers have to be positive.

IGENEX IGG RESULTS: NEGATIVE
CDC/NYS RESULTS: NEGATIVE



18kDa: -
22kDa: -
**23-25 kDa: -
28kDa: -
30 kDa: -
** 31kDa: IND
** 34kDa:-
** 39 kDa: IND
** 41 kDa: ++
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: -



To recap: My IGM is POSITIVE by CDC Standards. This is considerable validation. From all the research I have done .. this means I am creating ANTIBODIES to fight a current infection. This is quite scary indeed, but I will find out more on my May 2nd LLMD appointment.

My IGG is negative by both CDC and IgeneX standards, but if one of my IND had been a + instead ... it would have a positive by IgeneX standards.

IND means that there was a light band there, but not dark enough to be called a +

There is your Lyme Testing 101 .. Any Questions? :D

Explaining Lyme Tests

This is very difficult to understand. I apologize for that. I still don't understand it all. Try to get through it and read down to the bottom of the post. It is VERY important. :D

I have mentioned that testing for Lyme Disease is very controversial because of the inaccuracies of the test results.

The first and most common testing that Primary Care Physicians order to test for Lyme Disease is called the ELISA which stands for Enzyme-Linked Immunosorbant Serum Assay. *blah blah blah* They draw a blood sample and test the blood for antibodies that our bodies produce in response to being introduced to the Borrelia burgdorferi (Bb) (aka the Lyme Bacteria). In one study that I found, they tested 516 labs. In those 516 labs, 55 percent of the results were inaccurate. How would you feel if pregnancy tests were only 45 percent accurate? You get yourself psyched up for a blood pregnancy test.

How do they run the ELISA test? Well, they take different parts of the Lyme bacteria and break it down into segments and add the patient's blood. Any antibodies that are in the blood will bind to the different segments of the Lyme bacteria. The segments will change color and it will be diluted until there is no color. Then they will give you a dilution ratio. One Part Serum to (how many parts of water they had to use). 1:256 (would be 1 part serum to 256 parts water). Your results will show = Positive, Negative or Indeterminate (had to be diluted too much to be called a negative, but not enough to be called a positive).

For more information on the ELISA test and other tests:

There are many other types of tests for Lyme Disease, but generally LLMD's choose to use a Western Blot test (specifically from IgeneX a lab in California). However other doctors use Western Blots as well. The controversy in this test is that the IgeneX test uses more "bands" than a regular lab would use. I will try to explain a bit about the Western Blot.

When you receive a Western Blot from IgeneX, you receive two test results (actually four, but I will explain that too). IgG and IgM are the two things you will see when you look at your test from IgeneX. You will also note a bunch of different "numbers" with kDa next to them. Some of the numbers will show a double star (**). kDa stands for Kilo Daltons. Here is an example of what the labs see when they are determining your test results.



As you can see, some area (called bands) are dark and some are very light and others aren't there. Some of the bands are Lyme specific and others aren't. Out of a possible 25 bands, only 10 are reportable. Out of those 10 bands, FIVE must be positive on the IgG to be considered positive in the CDC (Centers for Disease Control). For the IgM to be considered positive, TWO out of THREE specific bands must be positive. It wouldn't matter if 8 of the 10 bands were positive, if two of those bands weren't specifically 23, 39, 41. then the CDC would say you had a negative Western Blog IgM.

For the IgeneX IGM results, you would have to have TWO of the double star numbers with a plus in order to be positive. For the CDC results to be positive, you'd have to have TWO of the BOLDED NUMBERS to be positive. (your results would be not bolded, i'm just bolding them here for you to see)

The test results you see from IgeneX may look like this:

IGENEX IGM RESULT: POSITIVE
CDC/NYS RESULT: POSITIVE

18kDa: ++
22kDa: -
**23-25 kDa: +
28kDa: -
30 kDa: +
** 31kDa: -
** 34kDa:-
** 39 kDa: IND
** 41 kDa: +
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: IND

For the Igenex test results to be positive, two or more ** numbers have to be positive.
For the CDC test results to be positive, FIVE of the bolded numbers have to be positive.

IGENEX IGG RESULTS: NEGATIVE
CDC/NYS RESULTS: NEGATIVE



18kDa: -
22kDa: -
**23-25 kDa: -
28kDa: -
30 kDa: -
** 31kDa: IND
** 34kDa:-
** 39 kDa: IND
** 41 kDa: ++
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: -

I have an important announcement to make tomorrow regarding the "sample" test results you see here.