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help read my lyme results.

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Posted 5/7/2014 2:19 AM (GMT 0)
Washoping some of you can give me some feedback. The nuero i saw said not to worry with these results but i feel like crap. From what i see here i have lymes? But since i only have one positive band i get put back into the negative category?

test 1 : Lyme, Total Ab Test/Reflex (160325)
Lyme IgG/IgM Ab [H] 1.33 index

Negative < 0.91
Equivocal 0.91 - 1.09
Positive >1.09

Test 2: Lyme, Western Blot Serum (163600)

IgG P93 Ab absent
IgG P66 Ab. absent
IgG p58 Ab. absent
IgG p45 Ab absent
IgG p41 Ab. [A] Present
IgG p39 Ab absent
IgG p30 Ab absent
IgG p28 Ab absent
IgG p23 Ab absent
IgG p18 Ab absent
IgM p41 Ab absent
IgM p36 Ab absent
IgM p23 Ab absent

Post Edited (LMFD296) : 5/6/2014 8:57:48 PM (GMT-6)

Posted 5/7/2014 2:51 AM (GMT 0)
Did they check the Western Blot IgM also? All I see here is the IgG on the Western Blot...

We can't diagnose you, but I will suggest that it would be a good idea to take these results to a Lyme-Literate practitioner for interpretation. Given you have symptoms and the positive on the first test, it is highly suggestive of Lyme...
Posted 5/7/2014 3:01 AM (GMT 0)
Sorry. I just updated it with those results as well. Those appear to be negative. So now i see an LLMD? im sorry i am just so confused on what to do. I was going to see my PCP as these results were given to me from my nuero.... IF i do see my PCP i guess im now under the impression that he will say im fine and not to worry about these results.
Posted 5/7/2014 3:24 AM (GMT 0)
Yes, most MD's would consider your test results to be negative overall.

However, Lyme is not supposed to be "ruled out" based on negative tests.

And you did have the one positive on the first test...

So yes, I think the logical next step is to consult a Lyme-Literate doctor for further evaluation.
Posted 5/7/2014 3:35 AM (GMT 0)
thanks alot Razzle. Im going to contact one tomorrow and see if they take my insurance.
Posted 5/7/2014 3:45 AM (GMT 0)
I should mention i was dx'd with Epstein barr virus yearrrssss ago.
Posted 5/7/2014 2:02 PM (GMT 0)
Hi LMFD,
Epstein-Barr is a very common virus - 94% of the American public will test positive for it. Those of us with chronic Lyme often have very high titers for it as well. Lyme disease lowers the function of our immune system and so opportunistic viruses -like EBV - take up residence.

I also agree with Razzle about you needing to see a LLMD that was trained by ILADS (International Lyme and Associated Diseases Society) standards with that positive result. They will be better qualified to help you than anyone. Just be sure that they were trained by ILADS standards.
Posted 5/8/2014 12:27 AM (GMT 0)
Local LLMD's cost over 1k per appt!!! thats crazy!!! if i go to my reg doc can i request labs be sent to igenex?
Posted 5/8/2014 2:00 PM (GMT 0)
You might be able to convince them to send the test to Igenex. When it comes back, it's not likely they will know how to read it properly, but if you will be sure to get the results we can help you interpret the results or you can go here to do it yourself:
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

If you have even one Lyme specific band show up as positive, then you will need to see an ILADS trained LLMD or Holistic doc for effective treatments, as the others won't treat long enough or with strong enough meds.

If you were to see a LLMD, they would also be much more likely to evaluate your symptoms (Lyme disease is supposed to be a clinical diagnosis) properly though.
Posted 5/8/2014 9:19 PM (GMT 0)
Im hoping my PCP will agree to send them out to that location. Do i need to bring l= forms from the website so they know where to send it? also What type of holistic doc am i looking for?
Posted 5/8/2014 9:43 PM (GMT 0)
You will want one who is either trained by ILADS (many Naturopaths and some Homeopaths are), are Lyme literate because they have treated many people with these infections, or is willing to learn. ILADS has training seminars that they can attend - or you can help educate them, but they have to be willing and have the time to do a bunch of reading.

You can also ask on here to see if someone near your area (you'll have to let us know where that is) knows of a Holistic doc that is able to treat these infections. The bacteria and the infection is much more complicated than 'normal' infections, so the treatment of them is usually fairly complicated.

As for the forms, it's best to call and ask the doctors office if they have the forms or if you should bring them. Just go to www.igenex.com/ and click on 'forms and sample requirements" - it will open and you can then choose "test request forms".
Posted 5/8/2014 11:17 PM (GMT 0)
Thanks a lot Traveler! you have been such a great help! im going to the docs tomorrow. I will update
Posted 5/8/2014 11:51 PM (GMT 0)
Thank you for your kind words. I'm glad I could be of help. Please do let us know!! :-)
Posted 5/9/2014 9:54 PM (GMT 0)
Ok. just back from my PCP. she wasnt in for some reason so i saw someone i have never seen before. Needless to say she was useless. She said my lymes blood results were not significant but after i told her the CDC dx of lymes is crap she decided to give me 21 days on doxy @100 mg per day to see if i feel better..... I made her run some blood work to check my blood sugar levels over the past few months as i have felt hypoglycemic alot as well. I have a follow up in 2 weeks and at that time i made sure i see my REG PCP, not this fraud lol. When i see her im going to push for the igenex tests. She will probably do it for me as she is pretty good. So how do you feel about the doxy? Is there anything else i shoudl add to the mix? i will go for a probiotic but what brand?
Posted 5/10/2014 12:05 AM (GMT 0)
Hi LMFD,

Just make sure you are taking 30 bill cfu/day minimum - ideally one with s. boulardi in it because that one helps prevent c. diff.

Just keep in mind 100 mgs/2x day is not sufficient to kill the lyme BUT it will keep it from replicating. It is actually from my experience on doxy that I knew I had lyme because of the herx reaction and then feeling horrible after going off antibiotics.

I would say do your research BUT some of the more commonly used supplements are B12 (preferably methyl kind), Probiotics, Magnesium, Vitamin C, Reservatrol and milk thistle. That seems like a lot but you can get them at any store. Often times places like rite aid will have buy 1 get 1 so I always look out for those.
Posted 5/10/2014 2:56 PM (GMT 0)
If your blood sugar is stable, then you should have your adrenal function checked by a 24 hour saliva test. You need to have saliva samples taken at least 3 times in one day to see if the cortisol levels are appropriate for that time of day.
www.stopthethyroidmadness.com/adrenal-info/

And did you mean 100 mgs of Doxy each day or is that twice a day?
100 mgs a day won't do anything to the Lyme bacteria. It's a waste. They give more than that if you have issues with acne.

The probiotics that you need will be refrigerated, or you can use kefir (www.culturesforhealth.com/milk-kefir-grains-composition-bacteria-yeast). If you are using refrigerated probiotics, you will need 30,000 - 50,000 units each day to help prevent yeast issues - some people may need more.
Posted 5/10/2014 5:29 PM (GMT 0)
Thanks for the reply guys and gals. Its 100mg 2x daily, sorry for the error. Im debating if I should even bother taking it? I guess im worried that once my rx runs out i will feel even worse... Or will i feel worse while i take it anyway?

As far as probiotics go i bought align.... wrong move? i have never seen refrigerated types before.

I also bought a glucometer today so i will be checking my levels when i feel the hypoglycemic feelings.

Im calling up a local LLMD on monday to see when she can get me in. This sucks
Posted 5/10/2014 8:44 PM (GMT 0)
"This sucks" - Ha! Most definitely!! But you can get through this -we're here to help you!

You can find refrigerated probiotics at some larger grocery stores and at health food stores. Align isn't bad (it helped my psoriasis!), but you need something with many strains of good bacteria in it.

Yes, it's worth taking the 200 mgs a day! It will confirm you have Lyme if you experience a herx or feel better. I know that sounds odd, but we have experience in 'seeing' when others are herxing when they post their symptoms and how long they've been on an anti-infective treatment, and if you start to feel better then it's because you have an infection!
Posted 5/10/2014 9:24 PM (GMT 0)
Ok ill start the treatment. When i see an LLMD and they do an igenex test would taking these possibly change the results?
Posted 5/10/2014 9:42 PM (GMT 0)
Some LLMD's have you take abx to do what is known as an "abx challenge". This is when you take the abx - usually a larger dose though - to bring the bacteria out so that your immune system will begin to fight it on it's own. This is what the tests will show as positive - it's not looking for the bacteria itself, but the immune response.

If you know which LLMD you will be seeing, it would be good to call their office and ask though. Some will want you to start the abx and others want to have their patients off of all abx.
Posted 5/10/2014 9:44 PM (GMT 0)
Please be sure that the doc is very aware that you have UC and that you are using the Remicade. This could easily change your treatment.
Posted 5/10/2014 11:35 PM (GMT 0)
Yes the UC is very important to tell docs. I spoke with my Gastro down in NYC who said lymes is no biggie to treat and that it would not interfere with my UC or remicade, however im sure she is thinking along the lines of CDC treatment....
Posted 5/10/2014 11:40 PM (GMT 0)
Also why is there alot of talk about c diff? I assume the abx usage causes some issues?
Posted 5/11/2014 12:52 PM (GMT 0)
Yes, the large doses and for some, long treatment times, can really cause a lot of intestinal problems - especially if the person already has UC or some other intestinal issue. Lyme has been known to lead to UC, Crohn's and other inflammatory bowel conditions, so it's pretty much always on our radar - along with a handful of other conditions like thyroid (especially Hashimoto's thyroiditis) and adrenal insufficiency.
Posted 5/12/2014 1:38 AM (GMT 0)
I will say i feel much better today. Im thinking its placebo effect... strange, Ill see how tomorrow goes while im at work.
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