Help with Igenex results please!

Hello everyone!  It is my first time posting here although I have been reading your posts for some time.  Based on symptoms, I really thought that I had Lyme.   I am in Canada and my doctor does not know much about it.  I made the suggestion to test for it and sent my blood to Igenex instead of doing the testing here in Canada, as I have read that the testing here is useless.

I have been waiting anxiously for the results, truly hoping it was a positive, as I have been searching for a diagnosis for years and I just want to find an answer. Results arrived and  I went to see my family doctor today who said straight out that she isn't really sure how to read the results but she believes that they are all negative. 

Some of the tests have clear cut results - negative.  But the IgM western blot says 2 of my double starred bands (34 and 41) are indeterminate.  My doctor took this as "probably" negative and has left it in my hands whether or not to retest.  I am not really sure what "indeterminate" means.   I would love to hear from all of you if you would retest.  IgG, whole blood, serum and IFA were all negative.  IgM shows 18 and 45 as positive , 34 and 41 as indeterminate and the rest are negative. 

Because my doctor does not know much about Lyme disease, I believe that she is looking at the lab results only in determining if I have Lyme or not.  So based on what we received, nothing will be done (treatment wise, etc).  I see on the bottom of each page of the test results " Diagnosis should not be based on laboratory tests alone.  Results should be interpreted in conjunction with clinical symptoms and patient history." Have any of you had negative or "inderminate" results and received treatment based on clinical symptoms and had your health/symptoms improve?

Thank you for taking the time to read my post.  I hope someone might be able to help me figure out what to do next. 

 

Hi Achieving Grace - Thank you for your response. I have checked out canlyme but find this site's forum much better. I would love to see a LLMD, either in Canada or in the US - obviously would prefer Canada financially, but will pay out of pocket if necessary. I just don`t know where to start! I don`t think my doctor is going to refer me to anyone or even look into it based on my test results. I will have to research and figure it out myself. Any suggestions?

I would like to list my symptoms and see what your opinions are. There are a few that are so "weird" and because I have seen them listed by people with Lyme I was really thinking I had it. Here goes:

-unrelenting headache/weird movement sensations in head
-eye pain - feels like eyes are being "pulled on" (have seen optometrist and opthomologist 5-6X's in past 2 years - eyes healthy and vision 20/20
-constant vertigo - doctors call it vertigo, I say it is a feeling of nothing being stable and movement in my head. This symptom goes with a weird one to do with my vision. Things that are moving are "blurred" - I can't seem to focus on them.
-photosensitivity
-sensitive to noise - this is one that I find weird. I sometimes feel like I am going to go crazy when there are 2 or more noises going on at the same time.
-Pressure and fullness feeling in ears.
-Too much movement - I have to look away as it makes me feel naseous and I can't "see" .
-Problems in judging distances
-Very painful neck - more on the sides and gland area than the back of the neck, but lots of clicking and noise from the back when head is moved.
-joint and muscle pain . The joints sometimes get "stuck" for a sec.....they catch sort of.
- I had shingles for the first time
-HOT HOT HOT - my doctor is going to check hormone levels to see if I am going into menopause (I'm 45) . There are the "flashes" in the daytime and waking every 30-40 min all night long due to overheating.
-Poor sleep - can't get to sleep and when I finally do, I wake constantly due to temp.
-Poor balance - in fact, I found out when I was getting tested for benign positional vertigo, that I can't stand on one foot with eyes closed for longer than a few seconds.
-As far as fatigue goes, I am not that bad now, but back 3-4 years ago, when my health started to go downhill, I had to nap everyday. This is when I was told that I had fibromyalgia (??)

Anyway, those are the main ones - there are others that sort of come and go over the years, but these are the constant ones. I did have a huge bite on my foot some years ago (can't remember exactly) that I think had a dark red/purple ring in the center with a huge red ring around it. No white. I don't remember it well - thought it must be a spider bite or something. I do remember how hot and itchy it was. No idea if this could be related or not.

I would so appreciate opinions, whether you think I should find a LLMD based on symptoms and my inderminate results. If so, any ideas where I would start? I am in Alberta Canada. I am trying not to give up hope, but today has been a real toughie with my results. Thanks.....your support means so much right now.

Thanks again AchievingGrace - I wasn`t sure about that bite because it wasn`t a real ``bullseye``. Thanks for the suggestion - I will start another post right away!

Hi Springsjean! What do you mean by "band 18 to be lyme specific"? I just googled western blot images and see what you mean. So if an indeterminate is showing but is not dark enough to be considered positive - what are the possible reasons for something being there other than Lyme? Hope that's not a dumb question....

Some of the bands listed in the lyme western blot are not specific for Bb (lyme) but will "light up" for any bacteria.  However, certain bands will only light up if the blood has Bb contact.  Band 18 is specific for lyme which means that only Bb will make it show positive.  Not a great explanation I know.  This is why the current lyme testing is totally inaccurate.  You can have 5 nonspecific lyme bands and have a positive result while you can have two or three bands that will only show up with Bb and get a negative result. Crazy huh?

There's always the chance that an indeterminate is inaccurate because the testing method is so not precise.  Have you ever done a trial with antibiotics to see if you have a reaction? 

With regard to your first posting, I myself had only 3 bands show up on my first western blot and therefore dr. told me it was negative.  Not knowing the lyme diagnosis, testing, protocol controversy, I had no reason to doubt her and believed I did not have lyme.  It was only until about 4 years later (and much sicker) that I obtained a copy of the lab work and discover the significant banding. 

With regard to your neck pain, have you tried Arnica cream? 

One of my first symptoms was an incredibly stiff neck. Thought I had just slept funny and it forced me to go to a chiropractor for the first time in my life. Arnica is an herbal cream that someone referred me to which has been a great help to both my husband and I. It is for muscle pain, stiffness. I have used on joints and muscle and my husband is using on his back now. It is made in France and supposedly used widely there.

That is the major problem with lyme testing. It is grossly inaccurate. The CDC designed the lyme test for surveillance purposes only, whatever that means. I would love to somehow find a way to start a movement to change the lyme testing but taking on the major insurance and medical industry in this country is just not in my future (Unless of course I hit the lottery).
Its almost like saying that that there is a test for breast cancer, but you have to test postiive for 2 other cancers also before you are told you have it. It just doesn't make any sense at all.

My neck pain was also on the sides and I was told it was glands by many many doctors prior to the lyme dx.

Thanks Springsjean and worriedinvt for the info. Thanks for letting me know about your vision/vertigo worriedinvt - I can totally relate to looking away from things that are moving - like scrolling down an internet page. I don't know of any other disorders/diseases that have that as a symptom.