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Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 10/12/2009 4:08 PM (GMT -7)   
Hello everyone
 
Was told I was in Remission with recent CD57 numbers being 85
 
Was also told I tested positive for Babesia
starting Mepron and Zithro soon for that.
 
But is a person in remission even with symptoms??
 
What does a doctor mean when he says Remission??
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 10/12/2009 9:03 PM (GMT -7)   
Hey Harley,
Was it a LLMD that told you that you were in remission? Did he/she mention you were in remission from? It does seem quite odd that ANY doc would tell you that you are in remission from a TBI & then start you on abx for another TBI.

I believe when a doc says you're in remission, they mean whatever you have is gone - no sign of it. With TBI's, most LLMD's (I believe) wait until 2 -4 months of no sx's.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 10/13/2009 5:16 AM (GMT -7)   
Hi Traveler thanks for responding.

Sorry, guess I wasn't to clear on what I was asking.
After being misdiagnosed for five yrs. I tested positive for Lyme.
Went to an ID doc and he treated me for Lyme for a yr. He tested
me for all co-infections and they were negative.

Changed Doc and now going to a more LLMD, whom checked my CD57
and determined from the number 85 that I was in remission from Lyme.

He in addition ran the co-infections and came back positive for Babesia.
Starting on those meds when I receive them in the mail.

I'm pretty confused on the whole remission thing considering I still have
sx .. But according to the LLMD because my immune system is back up then
he thingk im in remission...I DONT GET IT!!

I know is I feel like crap havent worked in over 2yrs and still have lyme sx.

Yeah, I dont even understand the remission diagnoses either.

One of the reasons I changed LLMD was when I asked for and read my
medical records I was MAD that he wrote in the reports that I complainted of
joint pain.....which I never had it was always my muscles and deep bone pain.
along with many other sx.

I really wanted to grab him by his big nose and toss him around the room.
But kept my cool and just took action on finding someone else.

EWWWW these doctors just Erk me.

Thanks for the clarification on what remission really means.
I will take that to heart when I see my LD again.
 


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 10/13/2009 11:44 AM (GMT -7)   
85 is not a great CD57- most docs now look for a CD57 count to be 120-150 or better. How can you be in remission if you still have symptoms and positive tests for Babesia? This is not Lyme remission. Basically the 3 big infections (Barrbs, Bart and Lyme in all its glorious forms) continually vary in their activity and symptoms. That's why I believe you need to treat all 3. Babesia is probably the most difficult of all the coinfections to eradicate. Be sure to also add Artemesinin to your regimen and ask your doc about this. I used to believe you could treat one and then address the other but I am now a firm believer in pulsed treatments for all 3 until the immune response kicks in AND you are symptom free.

I am looking for docs to do pulsed therapy protocols so let your doctor know to email me for information- we are trying to expand Dr J (SC) treatments.
Grew up on Cape Cod with Lyme... (TB aged 12 so did 2 yrs antibiotics as a kid). Weak immune system lifelong-self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Clindamycin/Azithromycin and oral Mepron, Bactrim and Flagy- pulsed therapy.


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 10/13/2009 12:38 PM (GMT -7)   
WOW! ! Man I swear! ! These docs are about ready to make me go nuts.

I used Rocephine thru a PICC line
first time was 2wks waited 2wks and started again
this was with an Endo Dr. He then sent me to an ID dr

Second time was for 28days IV Rocephine
was off that for 2 months and symptoms got worse

Third time was for 90days and then started on Cefpodoxomie
was on that oral for 7months and the ID dr. basically said,
I think you have had enough Abx and your just left with post Lyme symptoms.

Thats when I went to this new LLMD whom ran blood work
and is now starting me on the Mepron and Zithro

I felt the best when I was on IV Rocephine, lifted my brain fog the most

Those CD57 numbers are SO making me mad

Maybe I am his new guinea pig Oink! Oink!

I will be asking about Artemesinin see if he thinks this will be good for me.

Thanks for all the your help
 


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 10/13/2009 1:33 PM (GMT -7)   
Yeah we are all guinea pigs and it makes me very angry that there are not more intelligent clinical trials going on.

We need to push for this. Please ask you doctor about joining a research protocol.
Grew up on Cape Cod with Lyme... (TB aged 12 so did 2 yrs antibiotics as a kid). Weak immune system lifelong-self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Clindamycin/Azithromycin and oral Mepron, Bactrim and Flagy- pulsed therapy.


Dealie
New Member


Date Joined Sep 2009
Total Posts : 14
   Posted 10/13/2009 2:59 PM (GMT -7)   
Hi PCPC- Is there research to support the pulsing for these three? I am just curious as my treatment for Babesia has been pulsed and I have read in more than one place- Dr. Burascanos guidelines for one that the reason Babs treatments fail a lot of times is that the mepron level is not consistent enough for long enough. I have also read that if you do not eradicate Babesia- it reinfects you. Please correct me if I am wrong. I am just trying to figure this out. Many thanks-

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 10/14/2009 11:50 AM (GMT -7)   
Harleyrider,
I think what I read by Ginger Saverly (sp?) was that she believes a better range for the CD57 would be 100 - 360, not 60 - 360.  Also, Dr. B. states that patients that stop treatment with a CD57 below 150 are more likely to relapse.  I think most LLMD would suggest treatment based on symptoms and not just your CD57 score.  I know what you mean about being mad at what the doctor writes in your chart.  My Neuro, the first doctor I saw about the tingling in my hands and feet wrote that I had numbness not tingling, eventhough I corrected her everytime she said numbness, I would say no I don't have numbness, only tingling.  She also wrote that I had carpal tunnel in both wrist and tendinitis (I've never had carpel tunnel) and I didn't even have the tennis elbow at the time that came 7 years later after an injury.  I think she wrote that to justify the PT that she ordered for me and performed in her office.  I reported her to my insurance because she lied to me telling me that the tingling was from the bulging discs in my back, my GP told me that wouldn't cause the tingling on both sides and in my hands and feet and I should check into that.  They supposedly investigated my complaint, but wouldn't tell me their findings!  Go figure.
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 stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 10/14/2009 7:13 PM (GMT -7)   
I believe bartonella can affect your CD-57 test making it higher for some reason.
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