test results

[Marie]

Hi, everyone,

 

I?ve been away for a while and feel like I have missed an awful lot.  Last month I traveled to Maryland to see a rheum/LLMD.  When I got home, I could barely use my hands for a couple weeks, and I needed help with the most simple tasks.  It turned out that pulling my suitcase through the airport set off an inflammatory episode in my hands.  Thankfully,  doubling up on my anti-inflammatories calmed things down.

 

I got a bunch of tests results yesterday for Lyme, bartonella, babesia, inflammatory markers, coagulation markers, vitamin D, adrenals and thyroid.  I don?t have the actual labs, my doc is out of town, so they are mailing them to me.  At any rate? here they go?.

 

I?m looking hypothyroid.  Reverse T3 is high.  Rx armour thyroid.

 

Adrenals are normal (via saliva test).  This test also showed gluten antibodies.  I?m supposed to stay off gluten.

 

My CD57 was 140.  This lead the dr away from thinking I have chronic lyme.  He says given that I?ve been sick for 5 years, he?d expect that number to be a lot lower if I were sick with Lyme.  (Or else I do and it?s not very active?)  My progress thread has the results for my Igenex Lyme WB.

 

The vitamin D metabolism was also normal, inactive D was 26, active D was 29.  That's pretty consistent for me, and I?ve had those tested three times now!  He says the normal vitamin D metabolism also made him shy away from thinking lyme, as he thinks inverted vitamin D metabolism is more of a lyme creature.

 

The Fry smear for bartonella was equivocal-just one area of interest.  The doctor is not willing to rule it out.  Interestingly, though, the smear showed red blood cells sticking together.

 

Babesia: FISH (Igenex, using fluorescent and ultraviolet light to look at your blood) was negative, but that only tests for the babesia microti strain, not the babesia duncani/Wa-1 strain.  Quest had my titer at 1:512, though, two times what constitutes a “positive” result from Quest.  The doctor wonders if absence of microti in FISH means the Quest result is showing duncani.  I will need to look at the labs to see what Quest was actually testing.  (Dr. B says there might be as many as 24 strains of babesia! Duncani is supposed to be confined to the west coast.  I?ve been to California twice and Arizona once, but that's it.) 

 

As far as babesia symptoms go, I have nausea, heart palpitations, and, twice last July, I felt like I couldn't get enough air.  It was weird.  No sweats, fevers or coughs, though. 

 

My coagulation markers are all normal, except both my S and C proteins were low normal.  The doctor is wondering if, since both were low normal, the combined effect would be abnormal.  I am wondering if my circulation problems come from my sticky red blood cells.

All of my inflammatory markers, including sed rate, cardio CRP and TGF-beta-1, are normal.  Yet I am profoundly inflamed.  He said babesia can cause arthritic symptoms without the normal inflammation markers.  I thought that was interesting, and I haven't found anything on the Internet to support or contradict this proposition.  Maybe someone else has some insight?

The doctor wants to retest babesia at Quest to make sure the high titer was not a fluke.  Then he wants to start me on Zithromax and Mepron.  He says if lyme is really there, Zithromax gives some coverage against it and that, if you want to treat Lyme, you first have to go after babesia.

 

He doesn't want to rule out Bartonella, though, and says that it might come out to play if we hit the babesia. 

 

I'm not sure whether to be happy or sad with this news.  I had been researching so much about borrelia, but now I have some more fact-finding to do about babesia.  I think I just need some time to adjust to this new clinical picture.  My biggest concern is whether babesia, like borrelia, can trigger autoimmune reactions.  I do hope so – my ANA, RF and one of my Sjogren's antibodies are all positive.  Somehow the idea of infection is easier on my psyche than the idea of autoimmunity.

 

Thanks for reading!

 

Marie

[Susan LymeRA]

Marie,

I have Babesia duncani (WA-1) and I asked my doctor at my last visit if Babesia can cause RA.  She looked surprised at my question and answered “Absolutely”.  She is a rheumatologist as well as ILADS LLMD.

I have tested positive for Babesia ever since my first test June 07, but she didn't begin Mepron until 14 days ago.  She has tried to tackle it other ways but in January, I began symptoms so we started Mepron.  I was surprised to not also get zith but when I asked, she said  “we start with just Mepron”.  So far, so good.

She uses Quest lab exclusively.  Interesting what your doctor says about Vit D, CD57 and lyme.  I was very low in Vit D and borderline low in CD57.  I have tested positive for lyme in the past but current tests are negative.  Dr believes when we get rid of the babs, the lyme will return.

Susan

[Marie]

[user=86]Susan Lyme/RA[/user] wrote:

I asked my doctor at my last visit if Babesia can cause RA.  She looked surprised at my question and answered “Absolutely”. 

Thank you, Susan! 

My D is still apparently too low, so I'm supposed to up supplementation to 2k/day to start. 

I was surprised that my CD57 was so high…although it's still below the “normal” cut off, 200.  I would have been interested in seeing what it was before I went off gluten, my most successful intervention to date, which saved me from being extremely sick. 

What test confirmed the duncani?

Marie

 

[Susan LymeRA]

Hi Marie,

Diet changes made a very noticeable improvement for me too.

I'm not sure which test is used, but Quest is the lab and they are used by most rheumatologists so they are one of the more respected labs.

Susan

[tainabell]

Marie,

I just wanted to say that the CD57 isn't a very “definitive” marker of Lyme or Lyme immune suppression.  I have read elsewhere that many patients who are very sick with Lyme have had high CD57s.  I think one of the reason's why they take it is because if you have a very low CD57 it is a huge warning sign for the doctor that your immune system is in trouble and you need to boost all the things that assist your immune system.

My CD57 is 60, and my doc was pretty happy with that – it was within “normal” range, so she didn't stress too much about it.  She said there's still some debate in the Lyme world about whether the importance of the CD57.   

Have you read Dr. B's diagnostic and treatment guidelines?  http://www.ilads.org/burrascano_1102.htm  He talks a lot about treatment of co-infections in there.

Good luck!

[Marie]

Taniabell-thanks for the 411 on the CD57.  I nosed around and found that some people feel great with it low, while others are sick with it high…and that some patients' scores actually track with how they feel.  Nothing like certainty, hm?  🙂 

Susan-I got my labs, and the duncani test was through Quest.  I'm getting it retested tomorrow, this time w/ a babs dx code…hope that will make ins pay.  “Fatigue” and “arthralgia” codes didn't cut it the first time around. 

It's great that you're having such a positive response to the Mepron!  May it continue!

Marie

[Maz]

[user=601]Marie[/user] wrote:

Taniabell-thanks for the 411 on the CD57.  I nosed around and found that some people feel great with it low, while others are sick with it high…and that some patients' scores actually track with how they feel.  Nothing like certainty, hm?  🙂 

Hi All Interested Lymies,

Was sent this PDF from CTLyme and thought you all might find it interesting, too. It's a very good layman's explanation of the CD57 test:

http://www.newchronicfatigue.info/wp-content/uploads/2007/07/cd57.pdf

Peace, Maz

[tainabell]

Thanks for this article, Maz!  It was really entertainingly and clearly written – sometimes I get lost in the medical jargon, but this lady was super clear. 

I'm really curious to know what my CD57 is now that I'm feeling well.  When I was really miserable and symptomatic, it was 60, which is just barely within the normal range of 60 to 360, but below the threshold of 100 suggested here. 

Does anyone know a lab other than Labcorp that does this test?  My health insurance was very reluctant to pay for it the last time around, mainly because Labcorp is out of network, I think.  I was sitting on a $700 bill for a couple months until I got it worked out…

[JBJBJB]

[user=601]Marie[/user] wrote:

I?m looking hypothyroid.  Reverse T3 is high.  Rx armour thyroid.

 

Marie,

I am so sorry to hear your hands hurt. My biggest problem is my wrists. They are tender when I lift things.

I am also taking Armour Thyroid. What was your TSH? I was 5.08. A month ago, I tested, my TSH was 0.17. A little too low. I bet it's around 0.8 -1.00. I seem to have a lot more energy after I started Armour.  Last year I went to Sydney, my mother (a MD) told me to get my thyroid check. She was right, I was high.

The other possibility of inflammation could be yeast infection in sinus area, that also could have some arthritis symptoms. I read a link by A Friend, it is amazing how yeast infection in sinus could mimic arthritis symptoms.

Take care,

JB

[Maz]

[user=854]tainabell[/user] wrote:

Does anyone know a lab other than Labcorp that does this test?  My health insurance was very reluctant to pay for it the last time around, mainly because Labcorp is out of network, I think.  I was sitting on a $700 bill for a couple months until I got it worked out…

Hi Jen,

In the postscript of the article, it says that Clinical Pathology Labs in Austin, Texas is the only other reliable lab, other than LabCorp, that does this test. The link to this lab is here:

 http://www.cpllabs.com/index_Main.html

To find the code for the test CD57, you go to the For Doctors tab and enter it in the tests directory field.

I think one problem in using this lab is that this test is time sensitive and the sample has to be drawn early in the week and received within 12 hours of being drawn, so probably no good for sending from the northeast and expensive if expedited within that time frame.

Hope you're still on the upswing, Jen, and doing well!

Peace, Maz

[Author]

Posts