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I don't understand how to get the IgeneX test done.

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Posted 10/7/2017 5:08 PM (GMT 0)

Lmgraff said...
Girlie
My brother has slurred speech and muscle wasting , do you know if anyone has had similar symptoms associated with Lyme disease?

While I didn't have slurred speech, I did have muscle wasting.
And I did have some swallowing problems - felt like there was a lump in my throat..and for a short period (a few months), I had to focus on my swallowing.

There are people who are diagnosed with ALS (some are currently on this forum) and it turns out to be Lyme disease.
Posted 10/7/2017 5:58 PM (GMT 0)
Girlie
Thank you for getting back to me, his doctor did give him a copy of his igenex results. I will post them as soon as I get them .
Posted 10/7/2017 6:04 PM (GMT 0)
You do know the Dr. Martz story, right?
Posted 10/7/2017 11:53 PM (GMT 0)
Girlie
Do you know the specific names of the bands that make Lyme disease definite and I will take a look at the results. I'm unsure of the names for the bands that I would be looking for.
Posted 10/8/2017 12:09 AM (GMT 0)
These are the ones that Dr. Horowiz lists as borrelia specific bands:

23, 31, 34, 39, 83-93
Posted 10/8/2017 12:55 AM (GMT 0)
Girlie
Thanks for the info. Do you need to have all of bands.
Posted 10/8/2017 12:58 AM (GMT 0)
Nope. Dr. Horowitz says you have one of those PLUS symptoms...that's enough to diagnose lyme
Posted 10/8/2017 2:34 PM (GMT 0)
Girlie
My brothers Igenex & Quest Results . Please let me know what you think .Thanks Lmgraff

Igenex
Weston Blot
IgG
18 ++ Positive
31 Indeterminate
34 ++ Positive
41 ++Posivite
58 +++ Positive

only bands 31 & 41KDA are present -Test 489 is recommended for confirmation .

IgM
41 Indeterminate- Test 488 is recommended for confirmation .

Quest Lab
Phagocytophilum IgG <1:64
IgM <1:20
Rickettsia AB PNL WREFL
RMSF IGG -Negative
RMSF IGM - Negative
R.TYPHI IGG -Negative
R.TYPHI IGM -Negative

E. Chaffeensis AB IGG Negative
E.Chaffeensis AB IGM- Negative

Bartonella AB (IGG,M)W/RFL
B.HEndelae IgG Screen -Negative
B.Quintana IgG Screen -Negative
Posted 10/8/2017 5:44 PM (GMT 0)

Lmgraff said...
Girlie
My brothers Igenex & Quest Results . Please let me know what you think .Thanks Lmgraff

Igenex
Weston Blot
IgG
18 ++ Positive
31 Indeterminate
34 ++ Positive
41 ++Posivite
58 +++ Positive

only bands 31 & 41KDA are present -Test 489 is recommended for confirmation .

IgM
41 Indeterminate- Test 488 is recommended for confirmation .

Lmgraff - That should read "IF only bands 31 and 41KDA are present - test 489 is recommended. (for the IgG results)

Your brother is IgG Igenex positive...does it not say that at the top of the IgG test results?
Posted 10/8/2017 6:27 PM (GMT 0)
Girlie
it reads
Western Blot IgG -positive
CDC/NYS (New York State) -negative

only bands 31 & 41KDA are present -Test 489 is recommended for confirmation .
doesn't say If only bands 31 & 41KDA are present -Test 489 is recommended for confirmation .
Posted 10/8/2017 6:29 PM (GMT 0)
Girlie
it reads
Western Blot IgG -
IGX -positive
CDC/NYS (New York State) -negative
Posted 10/8/2017 6:37 PM (GMT 0)
So, it is positive on the IgG

That is his confirmation/backup to the symptoms.

He didn't have bands 31 and 41 present anyway...but that confirmation test is for when only those two bands are present and the overall result is an IND...the epitope test is to confirm that band 31 is indeed borrelia.
not necessary with his result of POSITIVE.
Posted 10/8/2017 6:52 PM (GMT 0)
Girlie
Are you saying between Igenex positive and his symptoms you feel
he does have lyme disease
Posted 10/8/2017 7:21 PM (GMT 0)

Lmgraff said...
Girlie
Are you saying between Igenex positive and his symptoms you feel
he does have lyme disease

Yes.

With an ALS diagnosis, I suggest you find a very experienced LLMD for treatment.
Posted 10/8/2017 7:25 PM (GMT 0)
Girlie
I will past this information to my brother
Thank You
Lmgraff
Posted 10/12/2017 12:36 AM (GMT 0)
Girlie
My brother went to see his neurologist today and he said my brother doesn't have Lyme , his test show that he may have been exposed to Lyme sometime in his life . He said if he had Lyme he would have pain and he doesn't. Also if he takes the antibiotics it's going to make him weaker , he feels antibiotics would do more harm then good. I don't know what to think.
Posted 10/12/2017 1:21 AM (GMT 0)
The neurologist is ignorant.

He is saying "may have been exposed to Lyme sometime in his life" because he had positive bands on the IgG.

With Lyme disease positive IgG bands can represent an active infection...just an 'older' infection.

Not everyone has pain. Everyone has their unique symptom package.

Please seek out a very experienced LLMD. He has nothing to lose. There are no effective treatments for ALS.
Posted 10/12/2017 1:32 AM (GMT 0)
Girlie
Thanks for getting back to me
. I told him to go to a LLMD he afraid the abx are going to make him weaker and he doesn't want to take that chance. The doctor told him don't believe what you read On the internet people make stuff up. His getting a feeding tube and a foot brace . I posted on the page with people who said they had als symptoms but no one reply back .
Posted 10/12/2017 1:41 AM (GMT 0)
lmgraff - A feeding tube? So sorry it's progressed that far.

There is no treatment for the ALS...does he not want to try to get better?

At least with Lyme disease...there is hope he will get better.

Here's something you and he can watch - from the internet that isn't made up:

/www.youtube.com/watch?v=UY9FdULDV6M
Posted 10/12/2017 2:21 AM (GMT 0)
Girlie
I watched the video I'm sending it to my brother. He still is able to eat , but Doctor is telling him to put the feeding tube now because when he lays on his back he has difficulty breathing and if his breathing gets worse and there comes a time when he can't swallow they would have to put him on a respirator to insert the tube and he might not be able to get off of it . He sleeps with a bi pap machine now. He going to put the tube in first then go see a LLMD .
Posted 10/16/2017 3:37 PM (GMT 0)
Girlie
Do you know a LLMD in the NYC area
Posted 10/16/2017 4:36 PM (GMT 0)
lmgraff - there are several in the NYC area.


you can email me.
Posted 10/16/2017 6:15 PM (GMT 0)
Girlie
How do I email you?
Posted 10/16/2017 6:41 PM (GMT 0)
Click on the envelope below my screen name on the left.

I would also ask the members for recommendations - you will want an experienced LLMD to deal with your brother's advanced symptoms.
Posted 10/16/2017 8:21 PM (GMT 0)
Girlie
I sent you an email plus I put a new post up asking for recommendations for LLMD in NYC
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