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NOT Lyme?? What the heck is going on?

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Posted 7/22/2016 11:38 PM (GMT 0)
Long story short, I am not having a good summer or any luck with any doctors.

My doctor at home (I was away at college when I was diagnosed) convinced me to have Quest run the Western Blot on me and only IgG band 41 was reactive. So we ran the iSpot Lyme on me (which we didn't know that they were being sued for medicare fraud. . . eyes ) which came out negative.

Well I finally got my Igenex back, and I have have two plus signs on bands 18, 31 and 34, one plus sign on bands 30 and 83-93, and an indeterminate on band 39 on the IgM. I have two plus signs on band 41 of IgG (the same one that came out reactive on the Quest lab. The Igenex was drawn right at the end of a month of antibiotics (which my doctor stopped because I couldn't eat and I was in so much pain on them).

I have no LLMD right now, so I'm on my own trying to figure this out. My family is moving halfway across the country and I'm about to go back to school, so I wouldn't be able to stay with them even if I found a good one. I'm driving myself (and my family, bless them) in circles trying to figure this out. But good LLMDs are rarer than gold and if I don't have Lyme disease. . . Maybe I did at one point and now all that's left are the symptoms?
Posted 7/23/2016 12:01 AM (GMT 0)
I am kind of confused, but that happens at this time of night for me.

See if I got this right - You were diagnosed while you were away at college but then you came home and your family doctor gave you a quest test and you only had one band show up. Right?

Did you keep a copy of your Igenex test with all those bands having plus signs?

Lyme doesn't go away. If you are having symptoms you have lyme.

If you can't find a LLMD, then maybe you can do a herbal protocol on your own.

Sorry about the hassle with doctors. It is quite common for a regular doctor to think you have anything else but lyme. I dont' think they learn about lyme disease in med school.
Posted 7/23/2016 12:03 AM (GMT 0)
Based on the results you posted it should say Igenex positive above your Igm results.

You were positive in many Lyme specific bands. This is the site I used to understand my results. Read down a bit as she does a great job explaining things. lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

You can start treating with one of the herbal protocols on your own until your family is settled in the new location and you can start searching for a LLMD. There are many people on here who do Buhner's and can assist you.
Posted 7/23/2016 12:18 AM (GMT 0)
If you have symptoms, nutrition and herbal and self-education as a start. I recommend Stephen Buhner's books and also Dr. Zhang's (Chinese Medicine) and Dr. Horowitz's as well. I agree with jrpsf... enough lyme specific bands to take right action. If you herx, then you know something is up. If symptoms improve with treatment, you are on the right track. Also - this quiz really made me realize I most likely do have a tick borne infection. http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html
Lyme is a CLINICAL diagnosis. Blood work is used to confirm.
Good luck! You'll figure it out! I don't have an LLMD, and have been figuring it out with help from this community. Made some great progress, and tableaud a bit, and considering other things that are going on as well.
Posted 7/23/2016 12:33 AM (GMT 0)
I'm sorry to say it this way, but you DO have Lyme according to those test results you posted above, no matter what any doctor says about it. You have either IND or a positive on Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

You tested either positive or IND on these Lyme specific bands: 31, 34, 39, 83-93. There's simply no way you don't have Lyme and have tested positive or IND on that many Lyme specific bands.

You can go there to find supporting Pubmed articles showing what these bands represent:
www.oocities.org/hotsprings/oasis/6455/western-blot.txt

What you need to do is either find a LLMD that is knowledgeable enough to understand this or treat on your own. If you need help with more LLMD suggestions, we can likely be help.
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