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2 LLMDs basically ignored mt positive IgeneX test. IS this odd?

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Posted 3/13/2014 10:10 PM (GMT 0)
2 LLMDs basically ignored my positive IgeneX test.  I basically have all the MS symptoms plus a few others. I don't have MS per Cleveland clinic. Two LLMDs have now told me they don't care about the IgeneX test results being positive. Is this odd to anyone?
Posted 3/13/2014 10:15 PM (GMT 0)
Actually no, it's not odd, it's typical and it's disgusting.

Depending on what bands are positive, you could have an overwhelmingly positive test and some doc's couldn't care less. Are you sure that the LLMD's that you saw were trained by ILADS? They don't usually act that way, although appallingly, more and more are.

Would you mind listing what bands you had show up as positive? I just may be time to find a different LLMD.
Posted 3/13/2014 10:34 PM (GMT 0)
Thanks Travler. You actually looked at my bands and told me it was positive. I don't know if it is very positive or just kind of positive.thanks again..again..

IgeneX IgM Western Blot
18 kda +
31 kda ++
39 kda IND
41 kda +++
83-93 kda +

IgeneX IgG Western Blot
39 kda IND
41 kda ++
58 kda +
66 kda +
Posted 3/13/2014 11:08 PM (GMT 0)
Wow to me you look positive, I only have 3 positives and 2 IND and my doc is treating me. Of course he was going by symptoms also. He started me out on A-L Complex to see if I would herx and sure enough I did, then he added ANX.

He never checked my husband, and we are waiting on results but I purchased Samento to see if he would herx and he did. If you can't get a doc to treat you, I would go on one of the herbal treatments.

Good luck and hope you find a doc soon to treat you.
Posted 3/13/2014 11:20 PM (GMT 0)
Thanks Revive. I have ordered the Buhner book and realted herbals. If all else fails I am going to treat myself. I just reallt wanted some MD help and a DX of somethng...
Posted 3/14/2014 12:51 AM (GMT 0)
Akkami,

It's sad that you are going through this, especially having a positive IGeneX result. Don't give up, self treat slowly, ask lot of questions, and if you feel led find a Dr that will treat you using the IGeneX test result and also by symptoms.

I have a positive IGeneX test result, too. I also saw a LLMD who said I didn't have lyme and refused my positive IGeneX result. She said it was a false positive. I know differently. I am now seeing a Lyme Literate Naturopathic Doctor (LLND). Unable to get a llmd to treat me, I am presently treating my Lyme/co naturally.

So, yes, your experience is very common, it's a shame, and these experiences and all the others do so much harm we'll never know the extent of damage done by inadequate testing, ignorant and unknowledgable professionals, and the lack of safe and/or available treatments.

Hang in there. ask questions, and lean on us if needed.
Posted 3/14/2014 12:58 AM (GMT 0)
Thank You
Posted 3/14/2014 12:12 PM (GMT 0)
Akkami,

Make an appointment with the best LLMD in your area that you can afford. Your health depends on it. Self treating with herbs should only be your last option.
Posted 3/14/2014 12:38 PM (GMT 0)
I'm sorry you can't get help from a physician, are you willing or able to travel? Where do you live?
Posted 3/14/2014 2:35 PM (GMT 0)
Thanks everyone. You never really know how good the doc is until you se them. Online reviews can be misleading I have learned.

I am in south Florida. I have several lists of the LLMDs in the state. The choices in my area are very limited. I have an apt to see another LLMD on Monday. He uses ABX and Natropathy as needed. I am hoping very much he is a good fit for me. If not there are several others in the state I can see, but they are at least a 4 hour drive one way to see.
Posted 3/14/2014 5:34 PM (GMT 0)

Akkami said...
Thanks Travler. You actually looked at my bands and told me it was positive. I don't know if it is very positive or just kind of positive.thanks again..again..

IgeneX IgM Western Blot
18 kda +
31 kda ++
39 kda IND
41 kda +++
83-93 kda +

IgeneX IgG Western Blot
39 kda IND
41 kda ++
58 kda +
66 kda +

Akkami ~
Here is what each of those bands indicates so that you can question the doc's yourself if they think this is a negative result. Each band indicates an immune response to that part of the bacteria, not the actual bacteria, so when you don't have a response, it only means that your immune system isn't responding - not that the bacteria isnt' there. Lyme suppresses the immune system, as does Bartonella and Babesia.

IND- Indeterminate - neither fully negative or fully positive, but there IS a response from the immune system to that specific part of the bacteria. This is more like a very weak positive- just "too weak" for them to say yes for sure.

Specific to Lyme means that it doesn't cross react with other bacteria.

Here's the break down of the bands. It doesn't matter whether they appear in Igm or IgG, they mean the same thing :

Band 18 - a part of the Flaggin (tail of the bacteria)

Band 31 - OspA - Outer Surface Protein "A" - specific to Lyme Disease and could take up to a year to develop.

Band 39 - BmpA - Bacterial Membrane Protein 'A' - specific to Lyme disease.

Band 41 - Flaggen B - another part of the tail of the bacteria.

Band 58 - unknown still, although some are speculating.

Band 83 - Specific to Lyme disease.

Band 93- Specific to Lyme disease.

So as you can see, you have tested positive on 4 different bands that are specific to Lyme disease. Considering the immune system CAN'T react to something that's not in the blood stream, there's no way that you can NOT have the Lyme bacteria in your blood.

Many doctors may choose to not treat based on these results due to the controversy and the threat to their license/practice, but to say that you don't have Lyme disease is just a lie. Plain and simple.
Posted 3/14/2014 5:42 PM (GMT 0)
Wow. You rock Traveler. I will bring this with me when I see the doc. Thanks again!
Posted 3/14/2014 5:48 PM (GMT 0)
Go get 'em! devil Giggle! turn

This is all about advocating for ourselves. Knowledge is power. We have to stick together until the docs can get it together!
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