Why wear a ribbon?

"I just found out my 13 year old had lyme disease," (awhaley)

MDJunction to me

"When I first came to MDJ, I was in a very dark place, and feeling quite alone, I don't know how I found this site, but I have been very grateful ever since, all of you have offered insight to the illness of Bipolar and the other things going on with me, being here has allowed me to find friends, and to feel safe in discussing things that I would never have shared before.

I believe it has also offered me the chance to reach out and help others. A simple Thank you, is all that I have to offer, to this site and to the wonderful people here.
" (carmen33)
We comply with the HONcode standard for trustworthy health information:
verify here.
Lyme Disease Support Group
A community of patients, family members and friends dedicated to dealing with lyme disease, together.
Join This Group
Group Home   Forums   Articles   Members (752)   Diaries   Leaders   Guidelines
Related discussions:
08/30/2008 10:06
Scoobie
Lime Green Ribbon
Posts: 15
New Member

Send a PM
Give a Hug
I did see my DO yesterday to get the results to my 1) Western Blot (Igenex, Inc) , 2) Chronic Viral Disease Evaluation #4 (Genova Diagnostics Lab) , 3) Comprehensive Stool Ananlysis/Parasitology (Doctor's Data Lab) , and 4) blood work (Lab Crop,I owe them my first born - I'm 51 so guess I will keep paying the bills, lol!

WOW is all I can say, head was and is spinning,way info over-load!

It apprears that I have a very bad case of Candida that has caused an infection that he said is now systemic. So he is treating me for the infection and the fungus.

Here are the prescriptions and other things he has offered me for the infection, fungus:

1) I can't figure this one out, but this is the best I can make out of his writing. Inflznma-blox. (can't read his writing! )

2) Nystaten Oral Suspension 100,000 #60 cc / 2 droppers and swish for 60 seconds. (RX)

3) Bactrim DS 1 BID for 10 days. (RX -for fungus)

4) Probiotics of course ( a brand that he sells)

5) Capryl 750mg 2 twice a day (yeast and bacteria) health food item.

6) BHT (health food items, need to buy these things on any suggestions of brand or company. My husband just unexpectedly lost his job with out any reserve, so have to be very cost conscious.

7) GABA Plus ( for horrible insomnia!)

I think that's it.

The appt was over an hour long, and I walked out pretty confused with info over load.

The Western Blot, I couldn 't make heads nor tails of, and he didn't explain veryly clearly. But he had so much to talk to me about, and was very concerned at the level of infection and fungus I had going relative to the Chronic Viral Disease Eval and the stool analysis. I know it's been very long term. I am just able to deal with all of this. My Western Blot was done at Igenex, Inc in Palo Alto, CA. He SWEARS this is the BEST Lab. He said I am positive, but he was very concerned about the other test. I got the feeling I needed to treat all of this asap. The treatment for the infection and fungus is not a money maker for him, but the LYmes is, as he has all of his own IV recommendations.

I go back the week after next to go over the Western Blot more specificly. I have Medicare and bless his heart, he lost a potload of money on me yesterday.

Is there a way I can share my test results on the Lymes? would I type all the KDa and **'s out? I have never seen a test like this, makes absoultely no sense to me or my husband. He just said I am positive, but he is very Lymes treatment happy. I may be judging him too harshly, but it's all he can say, and there are others things going on that need to be discussed and treated, such as my thyroid numbers. He wanted to blow them off, and my TSH is very low, I had to force him to address this so I could adjust my medicine intake.

I know this is a lot. But any thoughts on any or this is greatly appreciated.

Post edited by: gengland, at: 08/30/2008 10:11

Post edited by: gengland, at: 08/30/2008 10:16

Reply  


08/30/2008 19:24
Scoobie
Lime Green Ribbon
Posts: 15
New Member

Send a PM
Give a Hug
My test results, any comments. I'm completly in the dark with this. (palms sweating)

IGeneX, Inc.

795 SAN ANTONIO ROAD

PALO ALTO, CA 94303

(800) 832-3200

DRWN: 07/11/08

RCVD: 07/31/08

PRNT: 08/11/08

DIRECTOR: JYOTSNA SHAH, PhD

Tests performed at 795 San Antonio, P Alto.CA 94303, except portion of process of PCR & RWB which is performed at 797 San Antonio, P Alto, CA 94303

------------------------------------------------------------ ------------------------------------------------------------ --------------------------------

TEST NAME RESULT UNITS

------------------------------------------------------------ ------------------------------------------------------------ --------------------------------

LYME IgM WESTERN BLOT REVISED 11/16/06-

------------------------------------------------------------ ------------------------------------------------------------ --------------------------------

IGeneX Interpretation is based on internal validation studies. By IGeneX criteria, IgM WB is considered positive if two or more of the double starred bands below are present. The IgM WB is considered negative if less than 2 starred bands are present. A positive suggests exposure to B burgdorferi. By CDC/NYS criteria, IgM WB is reported positive if 2 of the following bands are present: 23-25, 39, 41kDa. The IgM WB is negative if less than 2 bands are present.

LIMITATION: Positive result for 31 and/or 34kDa may be present after vaccination in uninfected persons. Infection with HSV, EBV, HCV and/or syphillis (RPR+) may give false (+) results. In a sample set of 165 well characterized specimens with 36% positivity rate, the assay specificity and sensitivity was 96% and 73% by IGeneX criteria; and 99% and 58% by CDC/NYS criteria respectively

****PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE****

THEREFORE, WE RECOMMEND TESTING WITH ANOTHER METHOD AND/OR RETEST IN 4-6 WEEKS

BAND INTENSITY: Negative (-); No visible band present. Indeterminate (IND): Band present with intensity < Weak (1+) Positive Control. Positive (1+ to 4+): Band present at an intensity >/= Weak (1+) Positive Control.

------------------------------------------------------------ ------------------------------------------------------------ --------------------------------

IGENEX IGM RESULT POSITIVE

CDC/NYS RESULT NEGATIVE

18 kDa, -

22 kDa. -

**23-25 kDa. -

28 kDa. -

30 kDa. -

**31 kDa. ++

**34 kDa. -

**39 kDa. IND

**41 kDa. ++

45 kDa. -

58 kDa. -

66 kDa. -

73 kDa. -

**83-93 kDa. IND

LYME IgG WESTERN BLOT REVISED 05/22/06----

------------------------------------------------------------ ------------------------------------------------------------ -------------------------------

IGeneX Interpretation is based on internal validation studies. By IGeneX criteria, IgG WB is considered positive if two or more of the double starred bands below are present. The IgG WB is considered negative if less than 2 starred bands are present. A positive suggests exposure to B burgdorferi.

By CDC/NYS criteria, IgG WB is reported positive if 5 of the following bands are present: 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93kDa. The IgG WB is negative if less than 5 bands are present.

LIMITATION: Positive result for 31 and/or 34kDa may be present after vaccination in uninfected persons. In a sample set of 165 well characterized specimens with 36% positivity rate, the assay specificity and sensitivity was 96% and 63% by IGeneX criteria; 100% and 38% by CDC/NYS criteria respectively

****PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE****

THEREFORE, WE RECOMMEND TESTING WITH ANOTHER METHOD AND/OR RETEST IN 4-6 WEEKS

BAND INTENSITY: Negative (-); No visible band present. Indeterminate (IND): Band present with intensity < Weak (1+) Positive Control. Positive (1+ to 4+): Band present at an intensity >/= Weak (1+) Positive Control.

------------------------------------------------------------ ------------------------------------------------------------ --------------------------------

IGENEX- IGG- RESULT POSITIVE

CDC/NYS- RESULT NEGATIVE

18 kDa, -

22 kDa. -

**23-25 kDa. -

28 kDa. -

30 kDa. +

**31 kDa. IND

**34 kDa. -

**39 kDa. IND

**41 kDa. ++

45 kDa. -

58 kDa. +

66 kDa. -

73 kDa. -

**83-93 kDa. -

****FOR IND SEE NOTE ABOVE****

End of report

Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjunction with clinical symptoms and patient history.

Post edited by: gengland, at: 08/30/2008 19:29

Reply  


08/30/2008 19:51
pixey77
Lime Green Ribbon
Posts: 17
New Member

Send a PM
Give a Hug
well i think if you have a couple of bands that are ind that means it is considered positive in thier eyes.and it all what you feel is best for you some people go the all natural route me myself i am going to hopefully get the iv so i just got my results back from igenex myself recently but i havent been to the doctor yet.
Reply  


08/30/2008 20:22
Scoobie
Lime Green Ribbon
Posts: 15
New Member

Send a PM
Give a Hug
Hi Pixey, thanks for posting to me.

Can you tell me about the IV therapy you will use? Also, how did you get your test done, by the dr that you will let do the IV?

Hope to hear back from you.

Happy weekend!

Reply  


08/31/2008 06:35
denise17
Lime Green Ribbon
Posts: 255
Member

Send a PM
Give a Hug
I would'nt worry about your Dr. being "lyme treatment happy". I think that you are lucky to find a Dr. that has recognized that this is lyme by clinical sypmtoms and positive blood tests. Once you start the IV treatment you should expect to herx within the first month depending on when the bacteria cycles. If it is bad you can ask to reduce the dose for a short time as you have to let the body adjust to the large amount of die off. If all this happens this will be your confirmation that you really have the disease. I hope this is'nt to confusing. If you want I can give you some technical articles on the subject.

Good luck and take care,

Denise

Denise
Reply  


10/12/2008 17:07
pixey77
Lime Green Ribbon
Posts: 17
New Member

Send a PM
Give a Hug
sorry it took so long to post back but i did my test through igenex and i started the iv which worked well for about ten days then it started affecting my liver so i had to stop and my liver is fine a week later so this week i go on another med through my pic line and i wouldnt worry i defintely reccomend getting the pic line its not so bad but it took this dr five tests he ran then i showed very positive so that tells you how accurate some labs are i believe igenex is the best cause ive ha all kinds of symptoms for years
Reply  



Start a New Discussion

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice. Read more.
Contact Us | Bookmark Us | Add a Doctor | For Doctors | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | Advertise
Copyright (c) 2008 MDJunction.com All Rights Reserved