posted
My son's tick was removed 8/24 and I know he is dealing with LD, a co-infection(s) or both. He was tested (IgG/IgM Ab) a few days after that and was negative. Dr. sent us home. Well I started reading and watching symptoms continue in my son. Through research, our son has been on Stephen Buhner's protocol for 5 weeks. Though my gut said he needed ABX too. I called this last week and asked for some. I was given doxy 100mg BID for 6 weeks. My son is 15 and weighs 140# (I have hear dthis dosage is not enough). He has been taking them since Friday p.m. We have noticed no change in any symptoms yet. I have been reading on the ilds's site and came across this. I just want to know what we are dealing with. I have been told by another LD acquaintance that my son is not chronic yet. We are trying to get him into to a recommended LLMD, (long wait), I called IGenX this morning to speak to Dr. H to find out which testing to do, but Dr. H is out of the office all week, so I am back to pushing forward on my own.
I read this on Dr. Burrascano's Diagnostic HInts & Treatment Guidelines off the lids website. This is from page 8.
THE CD-57 TEST Our ability to measure CD-57 counts represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of the natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple, inexpensive screening test, because at this point we believe that only Borrelia will depress the CD-57. Thus, a sick patient with a high CD-57 is probably ill with something other than Lyme, such as a co- infection. When this test is run by LabCorp (the currently preferred lab, as published studies were based on their assays), we want our Lyme patients to measure above 60; a normal count is above 200. There generally is some degree of fluctuation of this count over time, and the number does not progressively increase as treatment proceeds. Instead, it remains low until the LB infection is controlled, and then it will jump. If the CD- 57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur.
I wonder if a CD-57 test would be accurate here with him not being chronic AND currently on antibiotics? Should I start here and have this run this week? Have you found anything that would say NOT to run this if on ABX or NOT to run this unless chronic?
Posts: 54 | From Texas | Registered: Oct 2010
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TX Lyme Mom
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If your son was tested only a few days after the tick bite, then that was too early for him to mount an antibody response. Therefore, it is to be expected that he would have tested negative because it takes several weeks for the body to build antibodies.
The disadvantage of the CD-57 test is that it must arrive at the lab within 24 hrs. after the blood draw to be accurate because the sample can degrade very quickly.
We had good luck on several occasions with Clinical Pathology Lab here in Texas because they ship their samples directly to their reference lab in Salt Lake City, UT by one-day air express.
Lab Corp is good too, providing that you can be assured that your sample will arrive at the reference lab in Calif. within 24 hrs. after the sample is collected. However, I have heard rumors that not all Lab Corp drawing stations are reliable about shipping their samples out by one-day courrier from some of their locations here in Texas, so be sure to double check with the particular lab where you plan to go for the blood draw.
You are right in that the CD-57 test is most appropriate for cases of late-stage, chronic Lyme disease. I doubt that it would be useful in your son's case which is relatively recent. The WB test at Igenex would be a much better test in this situation. (WB = Western Blot)
As for WB testing after antibiotics have been started, it depends on which antibiotics have been used. If he has been taking a cell wall inhibiting antibiotic, such as one in the penicillin or the cephalosporin family of antibiotics, then all bets are off. Here's why. Cell wall inhibiting antibiotics stop formation of the bacterial cell wall, and that's where the antigens are located. So, no cell wall, then no antigens. No antigens, then the chances are that you will receive a false negative test result on the WB test.
OTOH, if the patient has received any of the protein synthesis inhibiting antibiotics, then these do not interfere with the WB test results. In fact, there is a good chance that the test results could even be enhanced because there will be more dead bacteria with antigens still intact for the antigen-antibody-based WB test to detect.
What are some examples of the protein synthesis antibiotics you ask? Well, these include the macrolides (Zithromax, Biaxen) or erythromycin and also the tetracyclines (doxycycline, minocycline, etc.). The normal dosage for doxycycline when used for treating Lyme disease is double the ordinary dosage for doxy as used in other infections -- ie, 200 mg. of doxy bid ("bid" = twice a day), instead of only just 100 mg. bid.
If you are lucky, you can still treat your son's "early stage" Lyme disease successfully, but I must warn you that it is difficult to find doctors here in Texas who are willing to treat Lyme disease according to the ILADS Treatment Guidelines (or by Burrascano's Guidelines). The reason is that our Texas Medical Board (TMB)has been aggressive against any doctors in Texas who do not follow the IDSA Guidelines -- in violation of Art. 16, Sect. 31 of our Texas Constitution, I might add.
We anticipate being successful in reforming the TMB by revising our statutes, the Medical Practice Act, during the upcoming Legislative Session this next spring. Until then though, you will be lucky if you can find any Texas physician who is willing to put his license to practice medicine in jeopardy by daring to stick his head up out of his fox hole. They are all refering their Lyme patients to doctors in other states.
Send me a PM if you need the name of a doctor in OK or LA who might agree to treat your son. He's too young to lose his youth to this devastating disease, and he shouldn't have to wait until this time next year after we have succeeded in revising our state's statutes in order to make it safe for Texas physicians to treat according to the ILADS Guidelines once again.
posted
Thank you so much for your detailed response. I PM'd you for the doctor recommendations.
Posts: 54 | From Texas | Registered: Oct 2010
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posted
Our LLND said that the CD57 should not be relied on when treating kids. How old is your son?
My daughter will be 17 next month, and the LLND thought the LLMD should not have done it, that it didn't mean the same thing as in an adult. ( it was a 27). I didn't know what to say.
Good luck.
Posts: 42 | From Northeastern US | Registered: May 2010
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posted
our son is currently 15.
Posts: 54 | From Texas | Registered: Oct 2010
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bcb1200
Frequent Contributor (1K+ posts)
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posted
No idea about kids, but I think CD-57 is a good way of seeing how your lyme treatment is going. Note that it is only relevant for lyme and not co-infections.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
He has only been on doxy. I have ALWAYS loved living in Texas and think we have one of the best states for many reasons. I am baffled (yet not surprised) at the TMB bureaucracy that is present when it comes to LD treatment. We will be heading out-of-state for treatment. We are NOT going to let this go any longer. We are 8 weeks into this and the more I am educated, the more we know that we have to AGGRESSIVE!
Posts: 54 | From Texas | Registered: Oct 2010
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CherylSue
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Hey, the former president Bush had Lyme, so you think that state would be more sympathetic.
I agree that the dose of doxy has to be 200mg twice daily to be effective.
Forget Buhner's herbs, except maybe for a follow up. You need abx to pack that powerful punch.
Posts: 1954 | From Illinois | Registered: Aug 2007
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BackinStOlaf
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TXLymeMom- How would someone know if their blood sample was tested fast enough for the CD 57? I had mine done a few weeks ago and my # was very low (22).
How can I be sure it was accurate - I don't know how quickly they tested it. I'm so frustrated.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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TX Lyme Mom
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quote:Originally posted by CherylSue: Hey, the former president Bush had Lyme, so you think that state would be more sympathetic.
Yes, and I hear tell that even Pres. Bush had to go out of state to be treated. How 'bout that, huh?
Things ARE going to change here in Texas though. I predict that by this time next year that we will have succeeded in cleaning up the corrupt practices and policies of our Texas Medical Board. Our Texas Constitution protects doctors who belong to different "schools of medical thought" -- but our TMB has been getting by with abusing our Lyme doctors under the protection of the "confidentiality clause" of out state's statutues which allow them to get by with secret charges and secret hearings in a Kangaroo Court atmosphere. This WILL STOP in 2011, I promise.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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quote:Originally posted by BackinStOlaf: TXLymeMom- How would someone know if their blood sample was tested fast enough for the CD 57? I had mine done a few weeks ago and my # was very low (22).
How can I be sure it was accurate - I don't know how quickly they tested it. I'm so frustrated.
Call the lab and ask what their shipping policies are.
BTW, I noticed recently that Igenex has started offering the CD-57 test now also. Their instructions state clearly that the sample must be shipped (without ice) by overnight courrier and that it must arrive in their lab within 24 hrs. of the blood draw. It can only be shipped out on Mon. - Wed. to guarantee that it arrives at Igenex before the weekend.
I was mistaken above when I stated that the sample had to be shipped on ice. Obviously, according to Igenex who would surely know, my memory was foggy and I misstated the info about about the need to ship on ice, so please ignore my previous incorrect statement about this little detail. (I'll go back and edit that statement next, but many folks have already read it, so I wanted to set the record straight by pointing out my error here where it will be noticed by everyone.)
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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Here are some recent quotes about CD-57 from the recent ILADS Conference, summarized for us by a lay person who attended the conference. (Scroll down to his quotes from Dr. Horowitz, which is below the quotes taken from Dr. Burrascano.)
Note to Moderators: Since Dr. H's name is mentioned in the ILADS summary article, I did not disguise his name in my post above for fear that someone might not be able to find those quotes very easily. If you think it wise to do so, then I will not be the least bit offended if you wish to edit my post and omit his name.
Posts: 4563 | From TX | Registered: Sep 2002
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