Latest Test Results, etc.

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JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/6/2009 7:00 AM (GMT -7)   
MY POST FROM MARCH 2009:  I received a lot of my latest blood test results back. Of approx. 33 tests, they couldn't run 3 of the tests because of a mistake at Quest labs, 11 of the tests are still "pending", 7 are postive and the rest are negative. So now, just shy of 9 years since this whole 'Lyme disease - freak of nature' started, I am positive for Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter koseri IgA, Morganella motganii IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01) .
 
AS OF 05/05/09:  Dr. C says the Rocky Mt. Spotted fever and the Typhus are reflective of "old" infections and are not current.  He can't interpet alot of the other stuff.... However, I got the final report of all the "pending" results and there was a C4A test.  The range was 0 to 2830.... I'm a 22,140.  All they could tell me was that it is an indication of an ongoing inflamatory process.....  WITH ALL DUE RESPECT (and I'm trying really hard not to cuss here) I DIDN'T NEED A TEST TO TELL ME I HAD AN "ONGOING INFLAMATORY PROCESS!"
 
I have been referred to an Immunologist/Allergist to see if he can "fix me" so that I can take IV Vancomycin without having an allergic reaction (on my one and only test dose of Vanco, I ended up with "Redman Syndrome".  My face turned bright red, my eyes swelled, etc.)  If he can fix me, I'll go in for a PICC line and then do 4-6 weeks IV Vancomycin.
 
 
AND MY PARENTS - WITH NO DVD PLAYER FINALLY GOT ONE!  Soooooo I send my last copy of Under Our Skin to them.  My father hasn't even watched it yet.... and my step-mother's response??????? "It was sooooo depressing.  Is this how LD has effected you?"   AAAAAHHHHHHGGGGGGGGGGG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 5/6/2009 8:56 AM (GMT -7)   
Jennifer-

Are you getting the feeling Dr. C is now shooting in the dark? This time I am asking a serious question...

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 5/6/2009 9:25 AM (GMT -7)   
Hi Jennifer,
I've been wondering how you are doing.  Why did Dr. C. order the test if he doesn't know how to interpret them?  Do you have any idea where you might have acquired these infections?  Do you know what all of the test are for?  I haven't heard of most of them.
Take Care, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/6/2009 9:32 AM (GMT -7)   
I don't know what to think...... I kinda get the feeling he's trying to "pass me off".... he just can't find anyone to pass me off to - haha!

But, he didn't order all those tests, they were requested by a doctor friend of my husband.... and this doctor friend has another doctor friend in Belgium.... and together they requested the bloodwork and told me which labs to use. All the results just happened to all get sent to Dr. C since he signed the order..... which is why he can't interpet everything they ordered.

Anyway, I know Dr. C is excellent. I asked about going on IV Rocephin for 3-6 months and he said that wasn't his "protocol". Plus he said I might be Rocephin resistant at this point.

It's all getting to be too much - after 9 years - I don't know what more to do or how much more I can take...... and my parents aren't helping ifyaknowwaddimean!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 5/6/2009 10:23 AM (GMT -7)   
Hi Jennifer,
Are you going to be able to get together with the doctors that ordered the tests to see what they all mean?  Do you have an idea what they mean?  You've been on IV Rocephin 3 times? I can see why Dr. C. thinks you might be resistent now.  When you do find out what they all mean please post again.
 
 As far as your family goes, I can relate, my Dad doesn't even mention my LD (he did drive me to my visit with Dr. C. when I was down visiting them so I know he knows I have it) and I don't think my Mom even remembers I have Lyme.  I don't believe my sister the nurse even believes I have LD.  Oh, and my MIL told me "well I know alot of people that have chronic pain, and maybe you're just going to have to learn to live with it".  This from a woman who is always looking for the family's sympathy for every ill, real or imagined!  I've learned not to mention it.
Take Care, KO 
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/7/2009 5:57 AM (GMT -7)   
KO-LD - My husband has been scanning and faxing test results to his doctor friend..... since he just did this yesterday I don't really have any answers yet. I think I've done IV rocephin 3 times (I can't even remember - haha!)

Dr. C has put me back on Levaquin 250mg a day for 2 weeks, then 500mg a day for 2 weeks. And, in the meantime I have to make an appt. with the Immune/Allergist doctor.

These are the tests my husband's friend, Dr. T, had me take:

Th1/Th2 cytokine profile
Metal Elisa for Nickel and mercury
RNase L protein + RNase L activity
Natural killer cells : number and activity
Immunobilin test
Nitric oxide in serum
PCR of all herpes viruses : CMV, EBC, HHV6, HHV7, HHV8
PCR Chlamydia pneumoniae and trachomatis
PCR Mycoplasma genus and different species if positive
Mitogen T-cell stimulation test
CD57+ lymphocytes and C4a
Rickettsia, Coxiella, Babasia, Anaplasma and
Bartonella antibody titers and PCR
Parvovirus B19 Antibodies and PCR on cells.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs

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