to toe, did an EKG (which came out normal). I gave her my Igenex and Quest Labs. I told her my
symptoms were
Light Sensitivity
Acheness (Knees and upper back)
Trouble Sleeping ***
Fatigue ***
Anxiety ***
Obsessive Worries/Thoughts**
Digestive Problems
She said that while I was positive both on IGM and IGG for band 41 and IND 39 and IND 85-93 she
did not seem convinced I still had lyme. She would rather do a stool and see if I still have a
parasite from when I had Viral Gastroenteritis last year. She actually said I am healthy compared to most...That very well may be but I
dont feel healthy or at my personal best, I feel a change and horrible at that!! SO long story
short she will not treat me..what do I do......
Posted by coltman (Member # 21272) on :
Your igenex is not really positive. I would personally run all viral labs and see if it might be the problem. Also try other bacterial infections and maybe mycoplasma ( I have no idea about those though)
I believe timaca here has lots of experience with it .
Its not always lyme imho
Posted by springshowers (Member # 19863) on :
I would run Fry Labs testing for both the Smear test for the bacterial infection and the Protozoan. Two separate tests.
Lots of people might have marginal Lyme but still have Vector Borne Illnesses...
In the end its better to know what you test positive for so you can direct treatment.
Then too.. alot of those treatments can cross over and treat lyme if it is indeed there..
Posted by Lymetoo (Member # 743) on :
IND is a weak positive. Bands 39 and 83-93 are VERY important bands.
Bands 83-93 are the DNA of the Bb.
Find a new LLMD and get more testing. Have you been tested thru Igenex lab yet?
Posted by Robin123 (Member # 9197) on :
Hi Mel - question - you said you have lab tests from Quest and IGeneX, so I'm assuming you did the IgM and IgG Western blots thru IGeneX?
Tests don't always show up positive even tho we have Lyme. I don't think this doctor is an LLMD, since LLMDs treat clinically, by history and symptoms. You have symptoms.
I suggest you make a post in Seeking a Doctor here for a list of LLMDS to be sent to you.
Posted by kareamber (Member # 20110) on :
What were your quest results?
Posted by TerryK (Member # 8552) on :
I gather you have a previous diagnosis of lyme? What type of lyme treatment have you had in the past? Have you had co-infection testing? Is the LLMD that you saw a member of ILADS?
As Robin said, negative testing is not unusual even though you may still have lyme disease. Did anyone do an abx challenge prior to your testing through IgeneX?
If I had previously had lyme and had a full work up to exclude other likely causes for my symptoms, I'd find someone who would do an empirical trial with abx and co-infection protocols to see if I had a response.
Terry
Posted by meloctober (Member # 22406) on :
Thanks for your responses. To answer your questions:
1. I tested positive for Lyme 6 years ago. I went to the ER for "flu-like" symptoms prior to
this I remember having this huge welt on my shoulder which may have been the bite. The ER
sent bloodwork and sent me home. A week later the ER called to follow up with me and ask if I
was placed on abts bc I tested positive for Lyme. I received no call from my MD, ****ed as I
was I got my records and went to another PCP who gave me three weeks of DOxy and said "ehh you
were right on the line of positive dont worry" I did not worry since then.. Looking back I
remember occassional aches, pains, mainly just feeling tired and having reoccuring stomache
problems but I chalked it up to nothing. It wasnt until last year during memorial day
weekend I came down with viral gasteroenteritis and landed in the ER twice that weekend...it was
awful i couldnt keep anything down lost about 15lbs..a month later the panic attacks started and tinnitus..that is a big one! soo annoying..I
feel as if a switch went off..and I was just a wreck! I spent the past year going from
psychiatrist to psychiatrist and my PCP and all chalked it up to being anxious..I have never
been an anxious person! This summer I went to a Psych Aprn who tested me for Lyme via Quest.
The 41 Band was the only one that came back positive. She then sent me to Igenex where the
IGM and IGM band 41 came back positive and 39
IND and 85-93 IND... and here I am...
Posted by meloctober (Member # 22406) on :
sorry IGG and IGM band
Posted by meloctober (Member # 22406) on :
The doctor I saw was given to me from a list from here..Im sorry but I am not going to settle for "its all in my head" I have never been a depressed/anxious/worried person..this is not normal for me and for it to come on suddenly..I just dont know....
Posted by coltman (Member # 21272) on :
quote:Originally posted by meloctober: The doctor I saw was given to me from a list from here..Im sorry but I am not going to settle for "its all in my head" I have never been a depressed/anxious/worried person..this is not normal for me and for it to come on suddenly..I just dont know....
I dont believe its all in your head either. But there are many many reasons beside lyme. Lyme and Co is bacterial illness , which is attacked with antibiotics. It wont do you good if you have viral problems
It is likely it is more than one thing - but you need more tests .There are some inflammation indicators which you can see trough blood tests (vegf, c3a/c4a, cd57 etc). Run heavy metal tests ,run viral titers. Hopefully you might see a pattern there which could point you to the most likely root of your problems
Posted by 22dreams (Member # 17846) on :
I have lyme and my IGenex results weren't too different from yours although I don't have them memorized. I had some IND bands that are considered lyme-specific. Tests, even Igenex tests, sensitivity at best is in the 70%s. To be considered as a diagnostic tool, it needs to be 95% or better. We are just not "there" yet testing-wise.
You have a history of exposure--- more than that, a history of testing positive and remembering the welt/bite.
more than that: a history of lyme.
plus current clinical symptoms.
I don't know who you are seeing, but I'd find another lyme doctor for assessment if I were you.
and like coltman says, be assessed for other infections, viral and bacterial. More than one thing could be part of the picture and a more integrative lyme doctor would work to your benefit.
Posted by Lymetoo (Member # 743) on :
Not every dr on our list is a "good" one. They vary in capabilities.
Sounds like you need to try another.
Posted by 22dreams (Member # 17846) on :
quote:Originally posted by meloctober: The doctor I saw was given to me from a list from here..Im sorry but I am not going to settle for "its all in my head" I have never been a depressed/anxious/worried person..this is not normal for me and for it to come on suddenly..I just dont know....
Definitely do not settle for that answer Meloctober. I wouldn't either. So many have been right where you are and understand.
Posted by TerryK (Member # 8552) on :
Thank you for filling us in on your history. So sorry for what you've been through. Unfortuantely, so many here have similar stories.
A good LLMD (get an ILADS member), will do a differential diagnosis. This means they will look for all kinds of things besides Lyme. I had viral testing, mold testing, co-infection testing, nutritional status testing, thyroid testing etc. etc. etc..... You need a good diagnostician.
A great book that helps to understand the situation with Chronic Lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced Lyme disease. The book covers a lot, history, science and her personal story and a few other personal stories.