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The Lyme Disease Thread

CarlaB

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CarlaB Enthusiast
CarlaB
Posted
  • Author

Well, band 30 is very Lyme-specific. I think band 58 is, too .... can't remember ... does it have a star next to it? IGeneX is good about marking which ones are important.

It looks like you should see an LLMD. A positive Lyme-specific band plus symptoms typically indicates Lyme Disease.

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CarlaB Enthusiast
CarlaB
Posted
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This is a quote from Dr. C in Missouri:

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

aprilh Apprentice
aprilh
Posted

I edited my post above to show which ones had stars.

What does IND mean?

mftnchn Explorer
mftnchn
Posted

Scotty, glad you are posting here. I hope you soon get some relief. I am glad you are looking into lyme. Vaccinations are another source of mercury.

Sherry

mftnchn Explorer
mftnchn
Posted

April, looks like lyme is likely. IND means it wasn't clearly neg or pos, like a maybe.

dlp252 Apprentice
dlp252
Posted
What does IND mean?

It means "indeterminate", which basically just means they saw something there, but weren't comfortable calling it a positive--it also doesn't mean it's a negative either--there IS something there.

mftnchn Explorer
mftnchn
Posted

Does anyone know if Levaquin works for babesia?

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mftnchn Explorer
mftnchn
Posted

Here's a link with Dr. B's guidelines about the western blot bands, April.

Open Original Shared Link

CarlaB Enthusiast
CarlaB
Posted
  • Author
Does anyone know if Levaquin works for babesia?

It does not.

You can take Lariam, Malarone, and Art. with Levaquin (at least I did).

aprilh Apprentice
aprilh
Posted

Thanks for the info everyone. Carla, On that site about Dr. B's guidelines, it indicated Band 41 to be spirochetes "in general". Any idea what this means. Are there other *bugs* that are considered spirochetes?

I don't have any under the Specific Bands. Except an IND in one.

Guess I'll have to pay that doc by the minute to go discuss the results..... :huh:

CarlaB Enthusiast
CarlaB
Posted
  • Author
Band 41 to be spirochetes "in general". Any idea what this means. Are there other *bugs* that are considered spirochetes?

Yes. Gingivitis and syphilis.

I don't have any under the Specific Bands. Except an IND in one.

Guess I'll have to pay that doc by the minute to go discuss the results..... :huh:

band 30 is specific.
truthsearcher Rookie
truthsearcher
Posted

Just Fyi... my two tests from Igenex from 1/14/ 08 were still the 190 dollars. I had the kit shipped to my home. It may be more expensive if you get the kit from the Dr.

Also it is confusing with the lyme specific bands. Dr. J criteria is different from Dr. B's and according to Dr. J my 8yo son would not have lyme but with Dr. B he would. I'm definitly gonna ask the PA at Dr. H office for advice. Thanks Carla.

April,

I'm glad you have some results. Is your Dr. a llmd? My holistic Dr. looked at my positive Igenex test and said it was negative. Just beware.

Scotty,

Praying for you today. I believe besides my 10+ mercury fillings I was mercury toxic from my mothers mouth full of amalgams. (in utero) Mercury was also in contact solution years ago, (thermerisol) and is currently in flourescent lighting and is a danger if broken.

Rachel--24 Collaborator
Rachel--24
Posted

Carla....where did you find info that band 30 is highly specific?? I had a positive on band 30....I did as much research as I could on that band but never came up with anything definate.

I couldnt find anything "scientific" that implicated band 30 as being lyme specific. I did come across the info. you posted but in nearly all other lists/charts band 30 was not included as a specific band and there was no explanantion as to why this Dr. believes that 30 is highly specific??

I also had bands 58, 66 and 41....none of which were lyme specific. Band 30 was the one that I wasnt too sure about...lots of people saying it might be specific but nothing to really show that it is.

April,

I went to IgeneX last year and had the opportunity to sit down and talk to the lab director (Dr. Harris) about how to interpret the test results. I asked him about the IND's and was told that they do NOT mean that "something" was seen. They do not suggest a positive....they are neither positive nor negative. There was not enough info. for the lab tech to call it a negative or a positive....he suggests retesting following abx challenge or trying other methods of testing.

Alot of doctors are under the impression that an IND means that the lab tech must have "seen" something....but thats not the case. If it were positive then it would be indicated as such.

There seems to be alot of cunfusion re: the IND bands....I go with what the lab director told me since I think he probably has the best understanding of these tests.

confusedks Enthusiast
confusedks
Posted
Just Fyi... my two tests from Igenex from 1/14/ 08 were still the 190 dollars. I had the kit shipped to my home. It may be more expensive if you get the kit from the Dr.

That's so strange. I got the kit directly from Igenex and it cost $245.

scotty Explorer
scotty
Posted

i will just have to ask how much 2 Western Blots with a side of fries and a large Strawberry milkshake (mmmm) "to go please" will run me. do they have a value menu? see what they email i guess.

i got a response from 'my' doctors office that my doc wants me to ask the gastrologists? Gastroenteroligists? the GI guy to "precertify" enterolab. i just get the feeling my doc does not want anything to do with my current situation. at least the allergist was more helpful and actually was curious to see how i will be doing in a couple months for a follow-up. not sure why he suggested that my bloodwork results be copied to 'my' doc. i'm sure he won't look at them any more than he would look at me!!

i can't get a large enough quantity to put in the bowl right now. which is strange. usually i fill the larger bowl, but ever since enterolab arrived i been having small BMs, a fingers worth not always in that state. hardly anything comes out. i think it is a good thing, at least better. i'm thinking of splurging on some rice or quinoa, some good carbs always bring a load for me, but it porbably wont come at the right time. unless i have to go i generally cannot. who knows maybe by some miracle the carbs will work again. i got to get some results, something to work with here.....

CarlaB Enthusiast
CarlaB
Posted
  • Author

Scotty, I drank a large cup of coffee prior to doing my Enterolab test, LOL.

Rachel, on LN under medical questions, Dr. C's (Dr. C from Missouri) interpretation is there and includes band 30. I'm getting it from there.

scotty Explorer
scotty
Posted

Scotty, I drank a large cup of coffee prior to doing my Enterolab test, LOL.

at least i will get a night of "sweets"--but a week of sheets :))

GI wants to see me. they never heard of Enterolab!! "you can't just order lab tests on-line" as if it is someone in there garage stealing my money in a stained wifebeater. my insurance actually did research....but they like doctors orders

mftnchn Explorer
mftnchn
Posted

Its a pretty common response from doctors about Enterolab, because Dr. Fine hasn't published yet.

LOL, I did Enterolab malabsorption recheck last week, I thought I'd never get the specimen! I told my DH--I was so anxious about getting it into the "hat" that I couldn't go at all!

Scotty, you are allowed to do sequential BMs with enterolab in order to get enough to meet the volume requirement, just have to freeze in between...which is gross, but you have to freeze at the end anyway, so what's the difference IMHO.

scotty Explorer
scotty
Posted
Its a pretty common response from doctors about Enterolab, because Dr. Fine hasn't published yet.

LOL, I did Enterolab malabsorption recheck last week, I thought I'd never get the specimen! I told my DH--I was so anxious about getting it into the "hat" that I couldn't go at all!

Scotty, you are allowed to do sequential BMs with enterolab in order to get enough to meet the volume requirement, just have to freeze in between...which is gross, but you have to freeze at the end anyway, so what's the difference IMHO.

ok thats a good idea. i usually never have a problem. like when people talk about struggling to get a urine stream started.....i get in there every time like a little kid dancing out of my pants. although it is nice to not have D past few days, this is where it gets tricky usually

thanks

scotty Explorer
scotty
Posted

I believe besides my 10+ mercury fillings I was mercury toxic from my mothers mouth full of amalgams. (in utero) Mercury was also in contact solution years ago, (thermerisol)

truth,

i have 3 fillings that are shiny looking and assumign these are mercury.....did you have them replaced? maybe this TMJ somebody mentioned is in my near future. closer than i expected.

truthsearcher Rookie
truthsearcher
Posted

Quote

truth,

i have 3 fillings that are shiny looking and assumign these are mercury.....did you have them replaced? maybe this TMJ somebody mentioned is in my near future. closer than i expected.

scotty Explorer
scotty
Posted

i found a mercury free dentist in the area (the only one), but i dont get dental :( so that could be expensive not to mention my poor quality of teeth as it is. might have to check into him. i notice my back teeth with the fillings are even more bothersome at times now. like i am acknowledging the throbbing as being the result of the wedge of mercury in there. you would think after all these years the mercury would wear off.

Igenex said 2 western blots are 190 dollars. i'm going to contact the LLMD in Penn. see what happen + i got a name and now an appt with an ND today see what she thinks is going on down there.

i dropped my enterolab in the UPS today so here goes with that. still awaiting the bloodwork results.

here's mindboggler i manage to come across........opposing sides to Prilosec??? Nexium makes it very apparent on their website that it is gluten free. maybe i will see if i can switch, but Nexium needs a prescription. anyone know??

CarlaB Enthusiast
CarlaB
Posted
  • Author

Scotty, I'm glad you're making progress. I hope you can get your teeth done.

Prilosec is fine as far as I know ... I've not heard differently.

Thanks for keeping us posted.

scotty Explorer
scotty
Posted

NMD was a homeopath...why do i always learn things the hard way? she just wanted me to buy some sugar pills. my organic foods store recommended her. they failed to mention she was homeopath which i would not have known the difference anyway. said she was the only ND around. i was really hoping for someone to work with. what are these places set up for if they send you to people like that. i mean in all due respect lady i'm sure you have worked hard for your position but i REALLY need some help. makes me wonder where my poop is going right now. i hate having to live on this side of the fence.

ShadowSwallow Newbie
ShadowSwallow
Posted

I was diagnosed clinically with Lyme today.

None of the bands on the Western Blot came back positive, but I got a (very strong) positive for Ehrilichiosis. So based on that, my history, and my symptoms I'm starting treatment!

Birdy

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