Yet another curve ball.....

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Regular Member

Date Joined Aug 2009
Total Posts : 89
   Posted 11/7/2009 6:06 PM (GMT -7)   
I saw my doctor yesterday and he suggested that I might not have lyme. He says
if I had lyme the doxy would have improved it. He is testing for some other
things but here is my question....

Could you test positive on a western blot and it not be lyme but something else
causing the positive reaction?
Any help appreciated!

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 11/7/2009 6:25 PM (GMT -7)   
Mom, can you tell us more about your WB? Was it interpreted as 'positive'? Do you have a copy? Do you know what bands were positive?

I spent hundreds of hours searching for 'false positives' on the WB. Basically, on species specific bands, false positives are almost non-existent. Band 41 can possibly indicate other infections.

The only other 'false positives' I found were on WBs drawn by our pop labs. Because they do read a lot of bands, but neglect a LOT of Lyme specific bands, they could give you an interpretation that is a false positive if you have enough reactions on non specific bands.

So, we need to know more about your WB.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 11/7/2009 10:46 PM (GMT -7)   

I was told the same thing for five years. I knew something was wrong with my body but the doctors said that we didn't have Lyme Disease here. They NEVER asked me if I traveled or anything. NOW, I can barely walk most days. Guess what I have? Yes, for five years these ignorant doctors strung me along. I wish I could sue every single one of them.

I say, YOU need to take matters into your own hands. If you feel bad, then somethings wrong. If your test is positive, then you have Lyme Disease. Also, if you have a co-infection, this could be the reason why you're not feeling better. Most of these doctors do not know how to read a WB. You need to find a Lyme Literate Doctor no matter how far you have to drive. This is not just yours life, it's your sons life too!

I'm sorry but I'm very frustrated. I'm tired of these doctors doing this to their patients. They abandon us and years down the road, we are so sick that we can't function. That's where I am now. Do you want to be so bad off that you can only walk from your bed to the couch and vise versa? Do something about it! Even if you don't have Lyme, an LLMD will be able to figure out what's going on. They are truly knowledgeable.

Get a copy of all of your bloodwork, tests etc. This will help to get a diagnosis. Post your WB results here so that we can help.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 11/7/2009 11:07 PM (GMT -7)   
I agree with Cajungrl, and yes, at some point someone will find out if its something other than lyme- just make sure you tell your LLMD ALL of your symptoms.
I refuse to stay sick! Period. 

Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 11/8/2009 12:55 AM (GMT -7)   
Oh and Cajungrl, have you started your liver cleanse yet? I'm really glad you got some good guidance with that- you might notice some real improvemnt by just focusing on your liver for a while. :) I must admit i've been kind of worried about mine- anyway i think if you make liver cleansing a regular thing you might just be in for a pleasant surprise when they do a liver check on you again! My friend Carla was told her liver was bad but when she started doing regular liver flushing at her next check her liver was doing much better and her doctor asked what she was doing! She told him and he just grunted and said "keep it up." That made me brave enough to try my first flush. I am so glad i did too. There is actually so much a person can learn about helping themselves with that. Every now and then i give my son apple juice with about a tablespoon of olive oil at bedtime- this is the safe kid version of a liver cleanse. Anyway, i'm going on and on again! Bottom line- thank you for everything you do for us on the forum but please remember to take care of YOU too and let us know how your new journey is going! :)
I refuse to stay sick! Period. 

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 11/8/2009 7:29 AM (GMT -7)   
Cajungrl is right - thank goodness people who have been through this can steer us into the right direction.
Your doctor is probably not knowledgeable about lyme disease and all the other infections that go with it. He probably believes a few weeks of doxy will cure it and any other symptoms that crop up are unrelated - that is the CDC's position and how all the doctors are trained to respond. They do not have lyme disease. When they get it, they know better. You need another doctor.

I was sick for two years and saw six doctors. I told everyone of them about my tick bit, the strange rash (EM) and how I got sick immediately afterward. Everyone of them dismissed me. I was even insulted on occasion. I found out what was wrong myself researching chronic fatigue online. I also feel angry at the medical community, have wished I could sue them - know I can't, as I would be suing them for doing their job the way the CDC directs them to do it!

Veteran Member

Date Joined Oct 2009
Total Posts : 699
   Posted 11/8/2009 9:54 AM (GMT -7)   
You are so right, nefferdun. How many of us who are so sick now with chronic Lyme simply walked into a doctor's office with our symptoms and were correctly diagnosed the first time? Maybe we can't sue them, but I can't help holding the doctors who saw and dismissed me, and the ones who directly said to my concerns about Lyme that I didn't have the right symptoms, accountable for their erronious and/or missing diagnoses. The CDC notwithstanding, there is such a thing as Lyme, it does exist where I live and have lived, it has symptoms consistent with my symptoms, and I believe I should have at least been diagnosed correctly even if the treatment following CDC guidelines was insufficient. Besides, people aren't guidelines. If a doctor sees a patient who is sick and keeps getting sicker, who develops one disease after another (most verifiable through testing), why not put in a little thought instead of assuming, against the odds, that each disease is a separate occurrance? Maybe I need more time, but I'm not ready yet to ascribe what looks to me like part gender discrimination and part negligence to CDC guidelines.

I have Lyme; it doesn't have me.

Regular Member

Date Joined Oct 2007
Total Posts : 259
   Posted 11/8/2009 9:57 AM (GMT -7)   
When I got my Western Blot it had some note on it saying something about that it could be positive due to syphilis and a few other things.
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