I am seeing a llmd, got back results of blood today , blood sent to lab in nj that specializes in Lyme
( weird sym 7yrs many neurological , MRI spots etc)
Western negative, elisa positive, positive anaplasma, positive mycoplasma. Nothing else pos and he ran the scope .....
He wasn't clear on his opinion , but I am going try try doxy oral, can't hurt ,nand neverbtried before any anti b's...
Thoughts plz
Posted by Bitten in Bergen (Member # 34067) on :
Test results mean nothing. A good llmd will treat based on clinical symptoms alone.
Did your lyme report show which bands were positive? If you only had a positive or negative western blot, you did not have the right test.
Were you tested for babesia? bartonella?
Sometimes the only way to get a positive lyme test is through pcr (dna) testing if the body is too compromised to muster an antibody response.
Doxy is a great start, but didn't do anything for me.
Be sure to take high billion probiotics at least 2 hours after abx.
Posted by Lymetoo (Member # 743) on :
Yes, you need to find out which bands showed up. You likely had several and some are probably Lyme-specific.
You also need to get tested for coinfections as mentioned above.
What "scope" are you referring to?
Posted by lucy1336 (Member # 41272) on :
No bands ..... He tested for all the above ..... I just don't want to be chasing the "dragon" it's the wrong dragon .....
Posted by Razzle (Member # 30398) on :
The ELISA was positive, and this test rarely gives a false positive.
Western Blots done by regular labs usually do not report or test all the bands, including some which are Lyme-specific. So your negative Western Blot may be a false negative.
Furthermore, you have positive co-infection tests. And most LLMD's recognize that these co-infections seldom occur without Lyme...especially given your positive ELISA...
If you need more proof, ask for Doxy 400mg/day and see if you herx...
Posted by Lymetoo (Member # 743) on :
At any rate, you need to treat what is there. I would agree that the test was probably a lab that does not report all the bands.
and you can take a positive ELISA to the bank..it's worth gold.
I've never heard of anyone's test not showing ANY bands.
You could treat the co's and then get another Lyme test. Sometimes after taking abx for awhile, then retesting, the test will show more bands.
But that is a moot point since you already have a positive ELISA.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo:
What "scope" are you referring to?
?
Posted by lucy1336 (Member # 41272) on :
I have no issue being a lymer , quite frankly I prefer it to the dx of ms that I have been assuming for all these years......
I just don't want to make assumptions .... I have manynsympotoms but not ones most of you folks talk about....!I
have no physical fatigue ,, no joint paint , really no "pain" , never a rash never "bite" I rarely am outside...
No fevers but I have lots of other mostley neurological , spots on brain said not in normal ms location, clean spinal tap,
left eye pressure all the time, non stop muscle twitching ,
cognitive and memory are so bad it's scary
Test were: Mycoplasma, bartonella, babesia, ehrlichia c., anaplasma,
He said the positive mycoplasma pneu many people have that's not much to hang my hat on
Posted by lucy1336 (Member # 41272) on :
Lab is medical diagnostic in Hamilton nj just FYI Posted by Keebler (Member # 12673) on :
- Lucy,
Especially since you are still crossing paths with doctors who will put down those with lyme, you may want to be very careful and avoid ALL nicknames around this disease.
You say above that you "have no issue being a lymer" and that nickname is less offensive than some, however, it is still never a good idea to refer to yourself with a nickname in connection with any disease.
Tdiscussion below may be able to help you hold a shred of dignity when mixing with doctors who really would just as soon call us all kinds of nicknames and load on the judgement and stigma that always goes with a nickname that,
just by a shift in the tone of voice, can turn derogatory, or at the least, reduce those with this illness to members of a club. Some thoughts about all that:
Please do not call me �Lymie� [or any nickname regarding any diagnosis] -
Posted by lucy1336 (Member # 41272) on :
Sorry been calling myself mser ( and the other folks as well in ms-land blogs....)
Didn't ruffle any feathers with in that community.... but no problem ( I sell cars for a living were a carass bunch )
We have much biggie issues to worry about Right:/
I just hate to think I have a disease I dont or vs vice versa
I just don't know how someone like myself can determine if i have Lyme or not and how aggressively I treat
Maybe folks within ms community try so hard to shoehorn themselves into anything other than ms ( many times Lyme)
And much of that shoehorning is nativity about the severity of lyme
I don't want to be that person
But hearing you folks say a positive elisa is valuable is comforting )
I'm well read in ms I'm as green as they come Lyme
Posted by 'Kete-tracker (Member # 17189) on :
Lucy- The 41 band Musta been +, huh?... atleast on the IgG results... but it only indicates anti-bodies have been made by your immune system in response to the tails ALL spirochetes shed, including simple ones that are harmless & found in the flora of the mouth, for example.
Just FYI... IF the "ELISA" is positive, it indicates your overall level of the 'variety' of anti-bodies they're looking for was significant enough to cause your Lyme titre (pronounced "tighter") to be 1.0 or greater [rather than say 0.4 or 0.6].
IN THAT CASE, all labs THEN run the "Western Bolts", to further determine what if any bands are positive for the anti-body 'lengths' (kDa) typically encountered when the Lyme bugs break down into their predictable lengths.
These pieces are what stimulate our bodies to create the "Lyme-specific" antibodies, which, *in turn* are picked up by the Western blot assays.
Problem is, some folks' immune systems don't react with a healthy enough response to the spirochete 'debris', so the bands can show only as 'IND' or often 'NEG' (no band seen).
This is why a good approach is a short course of abx (like "doxy") for maybe 3 to 4 weeks followed by a Western blot panel. Any 'ketes in- or near- the blood stream get Zzzzapped, & the 'dead' pieces stimulate the Lyme-specific antibodies.
But with 'entrenched' late-stage Lyme, often there is not enough initial "kill" to create a fresh immune response. And the individual may also have suppressed immune system isssues, as well! It takes an experienced LLMD to make a good call, using all the info available to him or her... & even then, it's just the 1st step.
Good luck getting properly Dx'ed & treated!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lucy1336: Lab is medical diagnostic in Hamilton nj just FYI
- MDL?
Posted by lucy1336 (Member # 41272) on :
Yes thats the lab.. do you folks "like" that lab? Find its a solid testing site ?
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