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Here is my Igenix Test - Indeterminate - What to Do ?

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Lyme Disease
Do I Have Lyme ?
Yes - 63.6% - 7 votes
No - 9.1% - 1 votes
Maybe - 27.3% - 3 votes
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Posted 12/3/2016 7:23 PM (GMT -5)

Mustard Seed said...
Girlie, you are correct. Don't know where I heard that it cross reacts with 41, but I reread the igenex study and it says what you said. Sorry bout the mix up!

No need to apologize... :-)
Posted 12/3/2016 7:34 PM (GMT -5)
I wonder what the OPs epitope test results were.
Posted 12/3/2016 7:40 PM (GMT -5)
And who's the person that voted "no"? lol.

At this point, the only two options that are viable at this time are "maybe" and "yes". "No" can not be concluded at this point in time.

*shake my head*
Posted 12/3/2016 7:44 PM (GMT -5)
The OP gets results on Monday.
Posted 12/3/2016 7:45 PM (GMT -5)
I would say yes...because there are IND on lyme specific bands in addition to the 31 and 41.


Have we even seen a 31 come back negative on the epitope test? (on this forum?)
Posted 12/4/2016 8:58 AM (GMT -5)
I'm not sure (other than those that don't get any reaction on Band 31), but I know we've had plenty of conversations about it! LOL! This is one of the more informative threads:
www.healingwell.com/community/default.aspx?f=30&m=3357869 - although I'm sure there are others as well.
Posted 12/6/2016 3:48 PM (GMT -5)
Update turn POSITIVE turn 31kDa Epitope from IGenex today (Test 489)

Any more comments....? Anyway - feel I am getting someplace.......

Lyme doctor in 13 days...... (hope it is Lyme - I am 18 - Lyme would mean I can start to get better)


FYI - Previous Test Results from Igenix on Test 188 and Test 189:

IgG - (31 +) (34 I) (39 I) (41 ++) (58 +) Test called Indeterminate
IgM - (41 I) Test called Negative
Posted 12/6/2016 4:25 PM (GMT -5)
I'm going to say: "Congratulations!"

....because I know you wanted a definitive answer...well you have it!

Although, a LLMD wouldn't need that epitope test, I totally understand you wanting the word "Positive"

My husband did, too.

13 days and counting....hope your appointment goes well...please post an update, okay?
Posted 12/25/2016 5:40 PM (GMT -5)
Hi - Got to Doctor on the 19th.....now on a 10 week ramp up of probiotic, some vitamins, Hydroxychlorquine, Azith, Malarone and Amox.... was on Celebrex before - so doctor also added Pantaprozole to help make sure the stomach could handle the Celebrex...

Week 1 - Probiotics and Vitamins (B3 and B12), start 40 mg of Pantaprazole
Week 2 - Start 200 mg Hydroxychloriquine (first pill taken today smile
3 - Double the Hydro
4 - Add 250 mg of Azithromycin 3 days a week
5 -Double the Azith, to 500 mg - every day
6 - Add Malarone 250\100 - half a tablet - 3 days a week
7- Add Amox. 500mg - twice a day
8 - Increase the Malarone to half a tablet every day
9 - Increase Amox to two 500 mg - twice a day (so 4 pills)
10 - Increase the Malarone to one tablet a day.....

Any comments?

One question - I am only 5'-3" and 126 pounds..... this is the same dose a 200 lb man would get....wondering if I should decrease by 25% ???

Will let you all know how it goes.....

Getting Drugs for treatment - was the best Christmas present ever......that is kind of sad...but it was.... thanks for all the help
Posted 12/25/2016 6:01 PM (GMT -5)
Regarding dosage.

When I started treatment I was around 126-128 lbs and am now 135 and I was and am prescribed the same as a 200 lb man as well.

So, looks like you were clinically diagnosed as having Babesia?
Posted 12/25/2016 8:52 PM (GMT -5)
I can't comment on the abx dosages, as I don't understand them very well, but congratulations on the positive confirmation test!
Posted 12/25/2016 9:01 PM (GMT -5)
Girlie : just curious, what is the epitope test?
Posted 12/25/2016 10:56 PM (GMT -5)

evianangel said...
Girlie : just curious, what is the epitope test?

When you test positive on only bands 31 and 41 - you have an IND test result.

Igenex will do a second test ($100) called the Epitope test...to determine if band 31 is indeed Borrelia.
(It can rarely be something else; eg. EBV virus..for one) (They use the blood sample they already have)

My husband had it done...he was positive, so it changed the IND IgM test result to Igenex Positive.
Posted 12/28/2016 10:45 AM (GMT -5)
Babesia - Yes - He is thinking of co-infections - So I assume this is the Malaria type drug that I am on now....then add first Antibotic at the start of week 3, then another Malaria type, then another antibotic

How common is this co-infection treatment...? I was thinking Antibotics would start first, for lyme.... ?

Main problem has been joint pain...especially in one knee..... but really only joint problems - is this typical lyme or co-infection type problem....?

Next problem will be to get my Canadian family doctor to co-sign my US doctor prescriptions..... I can get the drugs without this co-sign being done, but they cost me 350% more to get around the family doctor - just to add insult to injury - of all the hoops I have had to jump thru to get to this point...there always seems to be a Roadblock - every step I take...... had to go to an afterhours clinic - to get the first drug I needed in the 10 week program.....doctor still thinks Igenex is a money grabbing, lying operation....she believes the government policy that basically warns of all US lab tests for lyme........ so this will be interesting....
Posted 12/28/2016 10:49 AM (GMT -5)
Co-infection treatments are extremely common for those that see a Lyme literate doctor. Lyme disease rarely 'travels' alone.

Joint issues are usually from Lyme, although they can be from Bartonella as well sometimes.

Would it be possible for you to find a "Lyme friendly" family doctor? It would make it a lot easier to get the treatments you need.

Some start with pharma abx, some start with herbs - the choice is basically the patient's.
Posted 12/28/2016 11:09 AM (GMT -5)
Yes - if my otherwise wonderful family doctor, does not help - I will find a Lyme "friendly" doctor up here - that will re-issue a US Lyme literate doctor prescription......as it is against the law for a Canadian Pharmacy to fill a US Doctors prescription.....

Happy New Year All....
Posted 12/28/2016 1:37 PM (GMT -5)
Aim to eat 20-50 grams of fat everyone you take malarone. Fat greatly enhances absorbtion. If you take it with a fat free meal, you may as well not take it.
Posted 12/28/2016 4:05 PM (GMT -5)

Lyme Yes or No ? said...
Yes - if my otherwise wonderful family doctor, does not help - I will find a Lyme "friendly" doctor up here - that will re-issue a US Lyme literate doctor prescription......as it is against the law for a Canadian Pharmacy to fill a US Doctors prescription.....

Happy New Year All....

Can't you just fill it when you're across the border for your LLMD appt?


Are you in Eastern Canada?
Posted 12/28/2016 7:45 PM (GMT -5)
Hi:

Yah - in Eastern Canada - NB...just a little more than an hour to the border.... I got out of the Maine lyme doctors office @ 9 PM....and all the pharmacies were closed in Bangor and we had to get back to NB for a doctors appointment the next morning - so could not get drugs in the US that night..... I got enough drugs now to take care of me for a few weeks, but will see if my doctor will co-sign the US prescriptions.... If not I will head to the US.... Anybody know if Bluecross will pay prescriptions filled in the US...?? Feel free to send me a private message......
Posted 12/28/2016 8:22 PM (GMT -5)
I doubt if Bluecross will pay for U.S. prescriptions.

BTW - to private message you - you need to enable your email option...that's our only way to pm.
Posted 1/16/2017 8:43 PM (GMT -5)
Update on treatment:

** been taking Hydroxychloroquine (Plaquenil) for 3.5 weeks and Azithromycin for 1.5 weeks **

Joints are doing much better....walked 2 km on a tread mill today and going to reduce the Celebrex that I have been taking for 4 months to reduce the joint inflammation\pain - will go from 2 Celebrex down to 1 pill and see what happens. Then add in - a low dose of Malarone next week, as the next ramp up in the drug program. Then the week after that - add in my last drug - Amoxicillin.

The Lyme symptoms seem to be reducing faster than expected....hope it keeps getting better and is not just a temporary respite.....

Only change or reaction to drugs so far is some isolated itchy patches, leg, ankle, neck and hand - lasts for 6 to 8 hours, then disappears and sometimes another little itchy patch will start - Is a slight reaction from the Azithromcin? Only other thing was a chest pain one day.

Comments ??????
Posted 1/19/2017 4:10 PM (GMT -5)
Been on Azithromycin for 11 days now... 250 mg for the first 7 days and increased to 500 mg this past Sunday morning. (and also Plaquenil for 3.5 weeks)

Lower legs get extremely itchy and a bit red....however no raised areas, just extremely itchy and a bit red.

Seems to be related to water from my morning shower.....this morning some large areas on my lower legs had an extremely strong burning sensation....very unpleasant....and one hand gets a bit itchy also....

I have had bad skin rashes from certain shampoo's before. Also had Hypothermia once, and for about a year after this I would get very raised skin patches, whenever I got cold water on my body.... So I seem to be sensitive on the skin rash\allergy front... My Dad has had allergy issues, pressure from a wrench, or cold, on hand would result in raised, itchy areas, that would last several hours

Wondering:

1) Reaction to Azithromycin ? Should I stop taking Azith. and\or switch to another antibiotic ?

2) Too much Azithromycin....? I am on the usual 500 mg dose ....but I only weigh 126 lbs !!!
So to me I am actually getting the equivalent of a usual weight person getting 715 mg. Should I give it a few days with no Azithromycin and then drop to a smaller dose of 350 mg ? Which would then be a normal dose......

3) Or is it something related to Lyme and nerves or

4) some kind of Herx reaction..

Thanks for your thoughts...... (Also, going to talk to my Lyme Doctor that is Far Away)
Posted 1/19/2017 4:20 PM (GMT -5)
500 mg azithro is the dose I see most people on...that's how much I was prescribed (female - 135 lbs)

I think it could be a herx. Maybe back down on the zithro for several days...see what happens...then at least you will know if it's from zithro - either allergy or herxing.
Posted 1/19/2017 4:29 PM (GMT -5)
I would encourage you to look into trying something like Quercetin. It helps with mast cells and with digestion, so take it just before meals if you decide to try it.
Posted 1/23/2017 10:04 PM (GMT -5)
Hi:

Took last 500 mg dose of Azihromcin on Thursday morning, due to a red itchy rash, which became EXTREMELY PAINFUL last Thursday morning.......So just taking Plauenil now..

Red and itchy spots have disappeared now....which seemed to be from the Azith. - which has not been taken for 4.5 days.......

Debating whether to add Malarone or Doxy. next.... Malarone is the next drug on my setup program......and then the last drug to add on my program is Amox.....

But since I had to drop Azith... so should I replace the Azithromyin with Doxy..... before continuing with my Drug Program... Basically now I am missing an antibiotic.....

Jus curious on what everything thinks......

Also, since last Wednesday - my legs have felt heavy..... today my legs felt very heavy, and my arms felt heavy also.... had a bit of brain fog today.... is this a Herx from the Azithromcin ?....or just Lyme being mean to me......
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