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» LymeNet Flash » Questions and Discussion » Medical Questions » Columbia second opinion...anyone do this?

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Author Topic: Columbia second opinion...anyone do this?
Jessiep
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I'm thinking of doing this. I am so tired -- treating for over 2.5 years now. I can honestly say I am NO better. I think my babesia is currently down to a pretty low load, but the lyme or bart or BLO or whatever is RAGING. I know Fallon et. al. won't treat you but I would SO like some idea of what I might have and what I should do about it. The sense I get is they try and confirm or not the diagnoses. Is this right? Anyone have any knowledge?
Posts: 342 | From Philadelphia | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
GretaM
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If you still struggle with lyme, there is a test out of Germany called

Infectolab.

They do a borrelia ellispot test.

My doc says this is best test the lyme community has at this point.

As for bartonella, if you have active lyme, you probably would not make an adequate antibody response for any IgG or IgM tests for coinfections.

I don't. My doc and I don't bother with any Elisa type tests either because my immune response is so poor.

But if I had to pick a lab for bartonella testing personally, I would try Galaxy Labs.

And a triple blood draw. It is expensive but sometimes they have a sale on the triple blood draw and it knocks the price down by 40%.

Also, be sure to be away from any antibiotics or bartonella killing herbs. The galaxy website says how long to avoid abx before the test.

My second choice would be Fry Labs. It seems one of the tests, sometimes folks get "bartonella like species present" or some such in the results.

Good luck, don't give up.

[ 11-16-2014, 05:41 PM: Message edited by: GretaM ]

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Jessiep
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I did galaxy but only the single blood draw. I didn't know at the time that it was so much less sensitive. And my llmd -- who I am no longer with -- didn't either. Going to ask my new holistic doc to run it though.

Thanks GretaM for answering!

Posts: 342 | From Philadelphia | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
Notti
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The LTT test that Infectolab offers isn't supposed to detect DNA.

It measures the reaction of the T-lymphocytes. When they have been in contact with Borrelia bacteria before, they will proliferate faster and show a stronger reaction when they are brought into contact with Borrelia antigens in the laboratory.

This test is considered more reliable than the ELISA and WB by some, but isn't 100% accurate either. There are also false negatives. When your immune system is weakened or damaged it can't mount a strong response. If your T-cells are lower in number or less active than they are supposed to be, the test can be negative even though you are infected with Borrelia.

http://www.infectolab.de/index.php?id=51&L=1

Posts: 109 | From The Netherlands | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
Rumigirl
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quote:
Originally posted by Jessiep:
I'm thinking of doing this. I am so tired -- treating for over 2.5 years now. I can honestly say I am NO better. I think my babesia is currently down to a pretty low load, but the lyme or bart or BLO or whatever is RAGING. I know Fallon et. al. won't treat you but I would SO like some idea of what I might have and what I should do about it. The sense I get is they try and confirm or not the diagnoses. Is this right? Anyone have any knowledge?

I would NOT recommend going there. They are not fully in the LL camp at all. They are massively expensive, often denying TBD's when you clearly have them. (Mods: Is this TMI on a public board?? If so, let me know, and I'll PM it).

You're best off with a top LLMD. You may well need a fresh pair of eyes and a different approach. Hasn't it been a while you've been at this with limited success? Or am I confusing you with another Jess?

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GretaM
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Thanks Notti!

I stand corrected, thanks for explaining how the ellispot works.

That is good to know about the Tcells. I don't make enough anymore, so that test would be a waste of money with my immune system.

I will edit my first post to correct.

Thank you.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Notti
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You are welcome, Greta.

Sometimes it helps to have more blood drawn in order to have a bigger sample with a greater number of lymphocytes.

That however does not solve the problems with the accuracy of the test due to malfunctioning lymphocytes.

A perfect test doesn't exist yet and that's a shame.

Posts: 109 | From The Netherlands | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
lpkayak
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i might be wrong but i think the trouble with columbia and fallon is they really focus on lyme not lyme complex or msids(is that what doc h calls it?)...you know the whole mess.

it seems to me getting to the bottom of it means going to one of the very top llmds. it wont be quick or easy...but that is what i think. i mean H, L, J, R...the big ones. i just listed east coast ones...i dont know where you are from but there are some on west coast too.

columbia is great for a spect scan tho.

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13709 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Jessiep
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I have been at this for over 2.5 years and some syx are mostly gone, yes. But I'm still at 55-65% on a daily basis with NO days above 70% for over a year. I'm currently on bicillin and that's it. My LLMD, a famous one in Maryland, is worried that I'm not improving despite all the abx and I must say I agree. I do still test positive to babs -- low titer. But not sure about Lyme. Maybe Bart? My afternoon headaches continue and continue. I'm just tired and frustrated and was hoping that maybe Col could help me determine what is left.

Also, really wondering if there is anything to this post-lyme theory. Don't get me wrong. I absolutely think long-term abx and combos are a must. But maybe these diseases SO do something permanent to your immune system/body. And if that's the case are we doing more harm than good?? Just so depressing!

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Keebler
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-
I have followed some of Columbia's work / public interviews for years. They focus mostly on the psychiatric aspects of just lyme.

IMO, They also are tending to blend more closely with CDC / NIH / (maybe even IDSA) on this, to a degree, partly to try to get what they can regarding funding & awareness but they are clearly not as wide eyed or casted as wide of a net as many once hoped they would be.

Part of the problem is that with medical research, the system is just not very well set up for lyme research and when lyme tries to fit in the existing round & square pegs, the other "shapes" often loose out.

But a whole new way of looking at it would likely just not be accepted so they have to try to fit in to existing organizational models. IMO, that seems to be my guess.

I agree with Rumigirl when she says:

"I would NOT recommend going there. They are not fully in the LL camp at all. They are massively expensive, often denying TBD's when you clearly have them.

You're best off with a top LLMD. You may well need a fresh pair of eyes and a different approach." (end Rumigirl's quote)

I would add a LL ND may be of help, too. Maybe different liver / adrenal support. Well, maybe different support for all various of the body systems that TBD can clobber so big-time.

Maybe a different direct approach as a RIFE machine? Truly, it might be a big help to lessen the liver load.

I assume you are gluten & dairy free, etc.

I do not believe that 2.5 years is long enough for everyone to reach remission. It can take much longer for some.

the park ranger in the documentary UNDER OUR SKIN did not see any improvement for a full 3 years and then it took another year to really feel it.

Pamela Weintraub, author of CURE UNKNOWN, also took a long time to reach a good solid remission.
-

[ 11-18-2014, 03:49 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS


http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)

Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
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Jessi-your last paragraph is why you really need one of the bestllmds at this point

I really dont think columbia is the place for that

I believe many things get messed up after lyme...the headaches could be adrenal problem

All llmds are different. I went to four or more and each one treated differently and i moved forward with each one

One was more organized and covered more bases than the others. Hes well known and not that expensive. Pm me if you want his info

Good luck. This is a hard journey

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13709 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
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Another option would be LL N D

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13709 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Be sure you are doing everything possible when it comes to diet. You MUST make changes in order to get well.

I would not spend my money on Columbia. Just my personal opinion on it.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94170 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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