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Old 11-25-2007, 02:32 PM   #1
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tarapags1107 HB User
update Dr. Hoadley (Igenex controversy)

Hi everyone-
I went to see doctor Hoadley (an ID specialist) in massachusetts last week and am here to give you an update. She seems to take a holistic and natural approach to treating diseases. She was very thorough with me and spent 1 1/2 hour with me and I didn't even bring her all my labs that I've had over the past 2-3 yrs. I just brought her the lyme testing and a few others that were recently drawn and she thinks that I have lyme disease and wants to continue to IV treatments of ceftrioxone (rocephin) 2gram daily. However, I went to my neuro the next day and he said that since I wasn't feeling any better on the meds that he thinks it might be MS and is sending me to an MS specialist. I have a feeling that it is MS now too. I had a positive spinal tap for oligoclonal bands that are seen as an immune response commonly in ms patients. Well, I still have my picc line and am pondering whether or not to even take the rest of the antibiotics since I had to have my gallbladder removed at 5 weeks into the treatment. I am afraid of having any further complications but do not exactly know what to do. She wanted to keep on the meds for 6-8 weeks. I haven't told her that I am not taking it and have missed a full weeks dose. I just am in the middle of two docs telling me different things and its confusing. Well, I wish I could get into this MS specialist sooner since my neuro says I have possible MS. Dr. Hoadley seemed to be a great doctor and explained to me exactly how lyme attacks my immune system, and explained co-infections and how my immune response is so great but she mentioned an interesting fact to me that I was questioning in the 1st place about the validity of Igenex and immunosciences testing. She said that Igenex is not a reliable lab and that if she were to take a lyme test from them, it would come back positive and she doesn't even have lyme. She said they have a greater "curvature" or threshold of how to interpret test and that it is more "favorable" to come back positive.
She is checking my HLA type and a few other tests as well. Good news is that she takes insurance and seems to be passionate about her work. Thank god I do not need to go broke any more if it ends up being lyme.

 
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Old 11-25-2007, 04:39 PM   #2
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Re: update Dr. Hoadley (Igenex controversy)

I did a western blot for Lyme from another lab, and I had band 41 and 58 show up. I later did a western blot with IGenex and Had band 41 and 2 IND. So I was NOT more positive with IGenex. In fact they showed less. So Igenex is not positive for everybody. They do report IND bands which have clinical signifigance.

 
Old 11-25-2007, 05:59 PM   #3
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Re: update Dr. Hoadley (Igenex controversy)

I also had test done with Igenex twice...NOOOOO positive here either..And I had lyme plus co-infections...

I learned that it is "very" hard for test to come out accurtate beings the bacteria doesn't like oxygen...It tends to want to imbedded itself into muscle, bone, ect...this is one reason why false negatives....

Most doctors will direct you to "their" lab of choice. It is all about the big dollar....

good luck...many people are mis-diagnoised as having lupus, ms. fibro, dementia ect...I know it can be very overwhelming on our end...The med's may not be working cause it is not the right combonation of antibiotics you are on...

Hope you find some answers soon...


 
Old 11-25-2007, 07:40 PM   #4
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Re: update Dr. Hoadley (Igenex controversy)

Hi tarapags. How long were you sick before getting diagnosed and what is the total time you have been on continuous treatment? Were you tested for all the co-infections? Do you have any?

IgeneX is one of the best labs for Lyme testing. They do not have positive results for everyone who tests there. They do have more sensitive testing on the Western Blot and they list more bands (including more Lyme specific ones) than other labs. Many Lyme doctors use this lab for testing.

Was this doctor recommended by a Lyme patient?

 
Old 11-26-2007, 07:42 AM   #5
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Re: update Dr. Hoadley (Igenex controversy)

where in Massachusetts is this doctor???

 
Old 11-26-2007, 01:07 PM   #6
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Re: update Dr. Hoadley (Igenex controversy)

Hi Tara- I've been looking forward to the update from you on Dr Hoadley. Thanks. I wonder if it is possible that certain lab's methodology fits a patient better than others and it is not a one size fits all solution.

NOT that I am an expert, but if I had indications of MS, I would put the IV in hold. As I am sure you know, abx makes MS worse, just as MS meds make Lyme worse. My LLMD has said that I can put my abx on hold and re-start again later so wouldn;t you be able to do that and not get too far behind? At this point, it sounds like better safe than sorry.

I wish all the best for a certain diagnosis for you. No matter what we each have, we just want to know for sure what it is! I hate that this disease is so mushy!

 
Old 11-28-2007, 07:08 PM   #7
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tarapags1107 HB User
Re: update Dr. Hoadley (Igenex controversy)

hello- the doc is in western mass (east longmeadow)

 
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