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see PCP this Friday.....testing questions

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Lyme Disease
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Posted 3/5/2014 11:57 PM (GMT 0)
I am trying to determine what testing I should ask for....what are reliable immune system tests? Should I do cd57 again, it was low last time. Wondering if I should bother with another saliva cortisol, hormone and neurotransmitters test...been reading articles that those tests are a scam. I am also trying to decide on another igenex en test or a Germany ltt test. I am beaten down by all this. I need test results to show something to keep my disability benefits. I was in bed all day. Probably will ask for AST ALT to check liver after 6 weeks of high dose abx. Is there anything out there to help lift mood and energy???? I feel like such a hopeless slouched, slug, sloth....any suggestions appreciated. Last test was igenex (neg but with 4 leak lyme specific bands) and cd57(55).
Posted 3/7/2014 12:50 AM (GMT 0)
I would really like to hear back regarding types of tests to check immune system.....or other thoughts about useful testing.
Posted 3/7/2014 1:33 AM (GMT 0)
I paid $340 for cortisol and neurotransmitter testing and feel like it was a waste of money. I'm not sleeping at night so of course my cortisol and neurotransmitters would be flagged out of range. But what does this test do? If you have low GABA, do you supplement with GABA? If your cortisol isn't normal do you take cortisol supplements? The point I'm making is that instead of treating the symptom, treat the cause so that the symptoms go away.

Have you done a DMSA heavy metal test? This checks for your heavy metal content in your body. A lot of Lyme symptoms overlap with heavy metal toxins.

Natural killer cell test, cd57, complete blood count panel.. not sure what else right now
Posted 3/7/2014 2:57 AM (GMT 0)
That is how I am starting to feel about that test, so is shows cortisol is off, hormones are off and neurotransmitters in the tank, so what if we dont know the cause, so I agree 100%. I have not done a heavy metals test, is DMSA the lab name?

I did a CD57 NK test last fall and it wsa the first one to show abnormality and started me down this lyme path. it has been nearly 6 months and I am thinking about doing cd57 again and the Igenex WB plus bart/babesia tests. Probably a liver ASt ALT to check status after abx treatment (I have had elevated liver enzymes for years now, not high enough to be acute but always elevatd). Wondering if there are other immune system tests that might show impaired immune status other than CD57? Thaks for the reply.
Posted 3/7/2014 12:25 PM (GMT 0)
Type into Google "great plains DMSA". Great Plains is the lab, DMSA is what you take to pull out toxins from body then have urine samples to measure the content. It's mentioned in dr. Richard Horowitz's book, why can't I get better, and covers it in detail there. But, my LLMD is having me do one next visit, don't know what lab he will be using. From the book, typical lab testing for heavy metals only measures the metals floating around in your blood. And it does not measure the heavy metals burrowed in fat cells, muscle tissue, etc. The DMSA test pulls these metals out and then checks your urine.
Posted 3/8/2014 2:09 PM (GMT 0)
SED rate can show inflammation in the body. One of the biggest problems with the disease is the lack of reliable tests, clinical diagnosis of symptoms and spending time in tick infested areas seem to be most useful. Many PCP do not have a good understanding of the disease.
Posted 3/8/2014 7:58 PM (GMT 0)
sorry for this late response Roxie...

my dr checks for CD57, CD4 - if inflammation is an issue for you, you could get an inflammatory cytokine panel and prostaglandin test. You could ask your doctor what test is worth taking in your specific case, cause all of these tests are expensive (they are over here) and not necessary for everyone (my sister does not by far get the testing I get, but she has the same infections).

24 hour salive test to check your adrenals?

Vit D test can also be valuable, together with 1,25-dihydroxy-vitamin D (1,25-diOH-D) test.
Posted 3/14/2014 6:06 AM (GMT 0)
Only test ordered was metabolic panel. She did say that she believes I have Lyme and has added it to my list of dx. She also agreed to consult with LLMD again for next stps or tests. Have to see SSDI doctor later today for med eval. stressing over it since I know it is a waste of time. not sure I should mention lyme since I think I recall someone mentioning that SSDI doesnt recognise late stage lyme. Not sure how it will go with company now and benefits once they see her dx of lyme. I just feel the system is rigeed against those who have chronic illness.... very down, tired of the battle, tired of seeing my decisions, behaviors so different from when I was well. Very discouraged. Hate this down spirit, cant seem to break into a positive attitude, cant will it and prayers hit the ceiling... cry cry To discouraged to pray anymore....I just dont understand the purpose. But I'm sure that is how Joseph felt also and Job.
Posted 3/21/2014 10:12 PM (GMT 0)
Got a pleasant surprise. This past Tuesday (for some reason I have been thinking everyday but Monday has been Friday) got call from LLMD and told they had an opening if I could get there the next morning (just under 24hrs) I was in bed and felt poorly and they gave me an hour to decide.

I stressed out cause wasnt sure I could drive (about 3 hrs one way) but I felt I would not get another chance for a month and tired of waiting to make progress so I called back and agreed. Spent next 12 hours getting paperwork completed, gathers past labs, preparing to drive out of town. I think some adrenaline kicked in cause I got it done and found a hotel room , I got there earlier than I thought I would be able to manage. I was hurting but grateful to God for a safe trip.

Got about 4 hrs sleep, got up before alarm which was my next worry, my sleep clock is messed up and I am usually going to sleep about the time I had to get up, but another blessing, I did not struggle to get up. Spent 2 hrs with new LLMD. She was very knowledgeable, treated me like an adult and made me feel I was in charge of the steps we would take (she made suggestions and ASKED what I wanted - refreshing).

I am cautiously optimistic. We will be doing some co-infection tests, all be on another antibiotic for a little bit (Ceftin) and BAR1 (an herb for Bartonella - she suspects based on symps I have Bart and I agree). Looking forward to getting answers and making progress. I did ask how long she thought it moght take to recover and she said i will probably be on some type of treament for 2 years.

Her office manager said he got to 80% funcitoning on her treatment, he still had some symps but was able to work again and participate in life - a\I would be happy with this result.
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