posted
I've been struggling for almost a decade with declining health. At a new Dr apt she mentioned Lyme which I had never thought of, she is relatively new to the lyme world but believes it's late stage neurological as my walking, memory, speech etc are impacted along with all my other typical lyme symptoms. Long story short I found a Dr to run Igenex testing for me. These are the results. IFA. 40 (equivocal)
According to the Dr who gave me the results even though they are all negative by both CDC and Igenex standards by his interpretation it shows positive indication that I do have lyme and it's highly likely that is what my issue has been. My question is how do any of you interpret these results? I wanted a strong positive or a pretty clear cut negative. I'm exhausted from years of searching and terrible declining health. Does anyone else feel these are positive indicators??? Thanks all!
Posts: 2 | From United States | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes. I agree with your doctor. It certainly seems very clear to me (having had a similar path), with your history & symptoms having been considered as well.
You say that you want " strong positive or a pretty clear cut negative" . . . sorry. I'd say that's pretty positive and to just understand the CDC criteria is a joke.
As for a "clear cut negative" that tests is so far from it, it points to positive.
As you say your doctor is new to lyme (so lucky you are) yet she may not be in the position to treat -- or her boss may not allow it -- so don't spread the word all around even at her office.
Proceed quietly but it sure seems like you have her on your team, even if you might need to find a LLMD to treat.
Other tick borne infections should be assessed, too.
I think you can breathe easier now at least knowing what direction to go. Many have come back from the point where you find yourself. It will take time, it's very complex yet possible.
Find your local and state lyme support groups. Good luck.
[ 09-11-2015, 06:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See the Western Blot explanation here, as one doctor explains - with history, symptoms interpreted correctly by a good diagnostician, even one positive band on either IgG or IgM can be the true ticket.
And, all those *** and IND or Equivocal bands -- well, they are registering. Your immune system could be too week for them to flash bright and strong but if they show at all, that's a true indicator as well. But the politics of testing being what it is, just won't allow for such official statements.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While Igenex is an excellent lab, there are other reasons on here that can explain why a CDC positive (or even a lab positive) is so limited by testing:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Still, when taking doxycycline, even if an "anti-cyst" Rx is on board, some key things to know.
Doxycycline cautions:
1. avoid sunlight on your skin (even "bounced" sun) even for weeks after course is done; [however, lyme treatment for someone who has apparently had it for a couple years will take a while, a month is not going to cut it, sorry]
2. Food with doxy. But no dairy. Do not take with any multi minerals, either. A substantial meal, in the middle with some food before and after the doxycycline really matters.
Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects). take doxy with a substantial snack or meal - in the middle so you've got some food before and after
Avoiding gluten can help with the stomach, too.
3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.
Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I suggest you read "Why Can't I Get Better?" By Dr.H and Watch "Under Our Skin." Lyme is EXTREMELY controversial and it is technically a clinical diagnosis since blood tests aren't always reliable. It sounds like you are kind of in the same position I am. I've been told I do have Lyme, I don't have Lyme, I do, I don't . . . You get it. My symptoms are classic Lyme symptoms and my iGENEx test results show some positive bands and positive for BB. I have labcorp tests ( which are not as sensitive) that show 2 out of 3 IGM bands. It is all very confusing. My advice and opinion is to educate yourself as much as possible and go with your gut. My gut is that I do have Lyme. The problem is finding someone to treat it for me. Best wishes.
***edited name of LLMD***
[ 09-11-2015, 08:07 PM: Message edited by: Lymetoo ]
Posts: 1431 | From USA | Registered: Mar 2015
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posted
Thank you for the responses. My quick long story is I've watched my life slip away over the past apx 10 yrs. At 21 I noticed some concerning health issues (mainly extreme fatigue, unable to tolerate heat, chronic pain). At 23 I had my first son and more symptoms started (numbness, shooting pain, heart/chest symptoms). Around 26 I was told it was fibro then possible MS, the Dr thought it was severe sarcodosis only to be told they were wrong and didn't know what it was. I was told it was all in my head, I tried to tell myself it was and I just needed to tell myself to get better. After each child my health worsened. My third was born 9 mths ago and it was like falling off a cliff. My ability to walk was impacted,my vision, my memory, speech etc just went down fast. My husband and I got me a cane to walk with when needed 6mths ago and the steady progression is scaring us both. I happened upon an internal medicine Dr who was the one who brought up lyme. It makes perfect sense! I never knew you could have lyme for a long time until after she mentioned it. Between the ages of 8 and 22 I know I had between 20-30 ticks removed. I grew up outdoors in Wisconsin. I was an avid hunter (bow deer hunting and turkey) and fisherman, enjoyed hiking and had owned my first home in the woods at 19. I had TONS on me from 19-22. I'm hoping my Dr will do something but I've read the terrible trouble people have finding help. I'm glad to have found this forum. Thank you all again
Posts: 2 | From United States | Registered: Sep 2015
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