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    Old 08-18-2007, 08:42 PM   #16
    Avalou
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    Re: New News

    Hi Guys;

    I'm going to try to write just one post to everyone who has responded.

    I am feeling better today--got the tear ducts well cleaned out--shouldn't have to do that again for at least a few days. I used to cry about once a year--oh for the good old days.

    TO MICKIE---Thank you for the encouragement. I agree that knowledge is power--I just have to figure out how to retain it long enough to keep from having a power-outage.

    TICKER SAID---Hi Sarah. I believe that if you are taking Cortef for adrenal issues, it is okay because it is something your body should have. I think this was addressed at the recent Lyme conference. I will check my notes.

    MY COMMENTS---I would also like to know what your notes say Ticker. I have Adrenal Insufficiency, and Dr. Ames wants me to take 20 mg a day altogether. I took this stuff several years ago, and it made me very sick. He says he thinks I should try it again. I'm nervous about it.

    TICKER SAID--Hi Ava. I do not understand the significance of them testing Band 30 and 31 only.

    Did you have a Western Blot done at IgeneX? Do you have results from the test?

    MY COMMENTS---I don't understand the significance either. Yes, the following are the results from my Western Blot done by IgeneX

    IGENEX-IGG-RESULT POSITIVE
    CDC/NYS-RESULT POSITIVE
    18 kDa +
    22kDa -
    **23-25 kDa IND
    28 kDa -
    30 kDa +
    **31 kDa +
    **31 kDa +
    **34 kDa +
    **39 kDa +
    **41 kDa ++++
    45 kDa +
    58 kDa +
    66 kDa +
    73 kDa -
    **83-93 kDa IND

    SARAH SAID---As for the rechecking of the 30 & 31 bands. On the most recent IGeneX kit I ordered (June 2007 edition) It's says in red ***NEW*** Please check if confirmation is to be performed on W Blots with 30-31 kDa = bands. I had never seen this before, and assume that this is what Ava's doctor is talking about. I guess they keep the original sample and retest for confirmation, but only of these two bands. Don't really know what the significance of this is. Dr. J said that the 30 & 31 bands are Lyme specific. But 30 isn't even a double starred band on the IGeneX test. Dr. Harris told my husband that 34 kDa is the last Lyme specific band to show up, and that helps deterime a very early infection from a later one. I guess I'll call IGeneX next week to try to get an explanation about this 30/31 confirmation. If there are other Lyme specific bands psotive, I don't see why they would need to confirm with only 30/31. But I'm not a doctor, sooo. Sarah

    MY COMMENTS--Yes, they said they keep the blood sample for thirty days, and the doctor can request a "confirmation" during that time. I left a message for IgeneX to call me about my results too. I'm having trouble understanding how a test can be Positive, and then another test done on the very (Same) blood is Negative?????

    SARAH SAID---Ava, sorry you are going through all of this, yes I understand how overwhelming it can be. My first appt. with my LLMD was like a whirlwind. I felt like it was that timed dating thing where you get five minutes to say as much as you possibly can, and then it's over. If it was me I would listen to Dr. Ames, not a regular doctor, he is the Lyme expert, so many other doctors don't really understand what they are doing. Also, talk to Dr. H at IGeneX, he has the most knowledge about interpreting the test results, find out what he has to say about your results. did they only do a confirmation on the 30/31 IGG and not the IGM? Were you CDC positive on both IGG and IGM? A CDC positive IGG is very hard to get, I don't see how that would be posible if you didn't have Lyme! My husband's IGeneX IGM is CDC/IGeneX pos, but his IGG is CDC/IGeneX neg. he has a neg 30 and an IND 31, and Dr. Harris said that he has Lyme disease. My son's IGG 30 is neg. and 31 IND (same as husbands) and he sees Dr. Jones and has been being treated for Lyme by Dr. Jones for 10 months now. Dr. Jones is one of the most Lyme knowledgable doctors in the world. I trust these doctors, I would not go by what a PCP/GP says.

    I had a friend in JR High school in Moses lake that got Lyme disease, back in the 80's. she was always walking home from Frontier through the field's over by Chico's Pizza. they aren't fields anymore though. Also my mom used to be the Park Ranger at Moses Lake State Park and she said that the picnic tables were infested with tick's. She said they were everywhere in that park. who knows how many people got Lyme Disease from that park and have no idea what is wrong with them. Where do you think you got LD from? Both my mom and Dad have been very sick for years, with most of the Lyme symptoms and they will not get tested, everyone of my Dad's sisters and brothers have the symptoms too, so they say it is just some hereditary thing they have. I think they all have Lyme disease. They camp and hike all over the state and all grew-up in Moses Lake. It is such a sad thing that people know nothing about Lyme disease and it's devastating effects. I'm glad that you were able to find a doctor that does know about LD. I know it is alot to take in right now, but it will get better, and the more you learn the more easily it will be to deal with. Keep us informed, and don't be afraid to ask ?'s and use us as support, that is what we are here for. Sarah

    MY COMMENTS---I could have gotten it any number of places. We used to camp out in the woods by streams half of the summer growing up. We have lived most of my adult life in the country where the deer come up at night and graze on our lawn. I've had other bites over the years that I just attributed to mosquitoes, spiders, or whatever. When you camp out, or live in the country, it comes with the territory.

    About 25 years ago I was bitten by a bunch of mosquitoes, and the bites got all red and swollen, and I was hurt all over like the worst flu I've ever had. I don't know if mosquitoes can carry Lyme or not though.

    I was Negative on the IGM, with 41, 45, 66 being Positive. My IGG results were IGENEX-IGG-RESULT POSITIVE
    CDC/NYS-RESULT POSITIVE (see the results above)

    My "confirmation" was Negative---here is what it said--

    IGG 30/31 CONFIRMATION NEGATIVE

    This test determines whether bands present at position 30 and/or 31kDa on the IGeneX Lyme IgG Western Blot are specific for B burgdorferi.

    Serum from the patient is tested against a Western Serum from the patient is tested against a Western Blot strip with two fixed B burgdorferi specific recombinant antigen fragments.

    IGeneX interpretation is based on internal validation studies performed on well defined Lyme patients: 67 positive and 161 negative. The assay sensitivity is 95% and specificity is 98% for late Lyme.

    Limitations: Positive results for the 31kDa band may be present after vaccination in uninfected persons. The Lyme 30/31kDa Confirmation Test specificity was >97% in a viral positive panel.

    BAND INTENSITY:
    NEGATIVE---No visible bands present.
    POSITIVE---If intensity of band is equivalent to or stronger than the weak postive control.
    My GP says this means I don't have Lyme Disease; but I told the specialist (Dr. Ames) about it, and he says I definitely (Do) have Lyme Disease. If you find out anything about this "confirmation" test, please let me know.

    I did see a blurb online that said---

    There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
    Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.
    CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 and 83.

    Can anyone interpret this???

    I hope responding this way wasn't too confusing. Thank you all for the support. I just want a new body yesterday---a thirty year old one would do me just fine. (*;*)

    Blessings;
    Ava

    Last edited by Avalou; 08-18-2007 at 09:00 PM.

     
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    Old 08-19-2007, 09:27 AM   #17
    Avalou
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    Re: New News

    Hi Guys;

    I made a few typos when I copied the results of my "Confirmation" test. Sorry about that--Here is a corrected copy.

    IGG 30/31 CONFIRMATION NEGATIVE

    This test determines whether bands present at position 30 and/or 31kDa on the IGeneX Lyme IGG Western Blot are specific for B burgdorferi.

    Serum from the patient is tested against a Western Blot strip with two fixed B burgdorferi specific recombinant antigen fragments.

    IGeneX interpretation is based on the internal validation studies performed on well defined Lyme patients: 67 positive and 161 negative. The assay sensitivity is 95% and specificity is 98% for late Lyme.

    Limitations: Positive results for the 30-31kDa band may be present after vaccination in uninfected persons. The Lyme 30-31kDa Confirmation Test specificity was >97% in a viral positive panel.

    BAND INTENSITY:
    NEGATIVE--No visible bands present.
    POSITIVE--If intensity of band is equivalent to or stronger than the weak positive control.

    This test was developed and its performance determined by IGineX. It has not been approved by FDA. The FDA has determined that such approval is not necessary. The test is used for clinical pruposes and should not be regarded as investigational or for research. This laboratory is certified under CLIA '88 as qualified to perform high complexity clinical testing.
    END OF REPORT.

    If anyone finds out what this means, to someone who was Positive for Lyme (even according to CDC standards) please let me know.

    Blessings;
    Ava

    Last edited by Avalou; 08-19-2007 at 09:31 AM.

     
    Old 08-19-2007, 10:43 AM   #18
    lotusillusion
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    Re: New News

    I've been reading about concerns of CORTEF on this thread, so I wanted to share about something I used in the past and worked pretty well for me.
    There's several supplements that are used for adrenal insufficiency and an entire book that I thought was very helpful. It's all by a DR WILSON

    If anyone knows of any reason I shouldn't use these supplements after checking it out please let me know. I'm new to the Lyme label, but not to the symptoms of it I've had for so very long. I took the addrenal supplements in the past and quit due to cost since I think the #1 boost that made the most difference was when I started Armour Thyroid w/ Lugol"s Solution. But I recently had to stop all my "female" hormones and that has left me feeling like I need more supplements to boost everything along.. (amazing how it all works together uh?) I'd also love to hear of any supplements that have been the most beneficial to any others out there.
    Good Luck to Us All !!!!
    Lotus

    Last edited by moderator2; 08-19-2007 at 11:41 AM. Reason: posted commercial website

     
    Old 08-19-2007, 04:50 PM   #19
    jenillumine
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    Re: New News

    Quote:
    Originally Posted by Avalou View Post
    Hi Ticker;

    The specialist (who treats 5 to 7 Lyme patients per day) had me do a lot of blood tests. I don't know if they are the kind you are talking about though.

    He had me get a DetoxiGenomic Profile.

    Then he marked the following things on the other sheet. Alpha MSH--ANA w/reflex--C3a*--Cardiac Eval.--CBC--Chenistry Profile--Custon Thy Panel--DHEA-Sulfate--ESR--Estrodial--Estrone--Growth Hormone--HLA DQ Olgotyping*--HLA DR Olgotyping*--IL-6*--Indicans Urine--Insulin, fasting--Iron Deficiency Panel--Leptin*--Megalobl. Anema--MMP-9*--PAI-1--Pregnenolone--Progesterone--Testosterone--Thyroid Auto AB--TNF*--Urinalysis--VEGF*--Vitamin D 25-OH--Vitamin A--CMV Igg & igm--HHV6 Igg & Igm--Reverse T3 57.10 Igg Igm IgF-1

    I'm not sure I copied those last ones exactly right--he hand-wrote them at the bottom of the sheet, and his handwriting is that of a doctor for sure.

    Are any of those the tests you are talking about? If they are, maybe he will start me on other antibiotics for them when he gets the results back.

    I do have, and will keep, copies of my Western Blot tests.

    Thank You;
    Ava
    Wow~~ now that is a lot of tests -impressive

    I just had a slew of blood tests too including the Westren Blot.
    I wish you luck and hope you can keep all that you need
    to do organized. It seems to be a lot but I bet its all
    worth it.
    Jennifer

     
    Old 08-21-2007, 05:09 AM   #20
    Avalou
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    Re: New News

    Quote:
    Originally Posted by jenillumine View Post
    Wow~~ now that is a lot of tests -impressive

    I just had a slew of blood tests too including the Westren Blot.
    I wish you luck and hope you can keep all that you need
    to do organized. It seems to be a lot but I bet its all
    worth it.
    Jennifer
    Thank you Jennifer. I wish the same for you.

    Blessings;
    Ava

     
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