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Posted 9/22/2013 3:33 AM (GMT 0)
 I am curious how many of us tested positive (initially or at any time in our journey) with ONLY Band 41?  about 6 years ago (when I knew NOTHING about Lyme) my ND at that time decided to run tests for Lyme because he could not figure out what was going on with me when all "regular tests" - mri, cat scan, blood work, etc - kept coming back within normal limits - even though I had strange muscle aches, buzzing in my arms and legs, severe fatigue, terrible stomach pain, etc, etc. etc.  Things would come and go but never completely go away. By the time I saw him I had seen every kind of dr there is and most said, "I have no clue" or "It's all in your head." 

When he got my test results, he said my western blot and my igenex tests both showed positive for band 41 and only that band, so I "don't have Lyme".  I accepted that and never questioned it. Then, last year I saw Under our Skin and the hair stood up on the back of my neck as I cried - realizing - I likely have had and do have Lyme. 

So, I am now in the process of finding a dr, etc. after having had a very unfortunate experience with an LLMD a few months ago that has left me pretty cautious about how to find a LLMD/LLND who is really concerned and wants to help versus wants to just make money, etc.  But I am confident I will find one and that I will get better. 

Lately as I've been reading various posts, it seems a number of us tested positive only on Band 41 ... I'm curious - if that is the case of you - can you respond to this post?  Thanks much and let's all get well.

Posted 9/22/2013 4:13 AM (GMT 0)
Hi kathleenta, I too am in the "band 41" club. My regular family Dr tested me twice at my local lab and 41 was the only positive one. I got bit in May of this year and pulled the tick off myself which then swelled to the size of a silver dollar. My Family Dr. treated me with Doxy for 1 week and stated " you will be OK"..Yeah right!! I was bitten again 2 weeks later and I pulled that one off as well, this time no rash. I spent the entire summer with every symptom you can imagine, and then some. All the Dr would give me every couple of weeks was " one week of doxy". All in all I took Doxy for 5 weeks in 11 weeks time, pulsed on and off.
Then I was LUCKY to find this forum. I reached out and found a LLMD and after reviewing my history and physical exam, he stated " you have Lyme+Babesia"....
He sent my blood to Igenex and quess what? Only "band 41" came back positive..I was afraid of what he might say but he never said it.LOL Instead he said, " I don't care what the test said, I have treated enough people to know when they have Lyme, and you have it".
So, I hope that answers your question.
Just don't do what I did all summer while taking ABX..I had very little experience with probiotics and "didn't think they applied to me"...LOL I ended up compounding my own problem with another one, Candida..Now I cannot have any sugar, limited carbs, and drink apple cider vinegar water (yuck) to kill the yeast beast.....Good Luck....Lets all get better....
Posted 9/22/2013 3:43 PM (GMT 0)
I too belong to the Band 41 club! I had to have very strong abx for 12 months before my tests finally came back fully CDC positive for not only Lyme disease, but Rocky Mountain Spotted Fever as well. The LLMD that I saw told me that we had to assume that I had all of the tick-borne infections though, due to the number and the severity of my symptoms.

So after going through treatments for not only Lyme, but Bartonella and Babesia, I am now free of any active symptoms. I had those infections for most of my life though, so I do still have to live with some permanent damage that was done, but I can do that.
Posted 9/22/2013 5:40 PM (GMT 0)
Yep, me too...for years I have only tested with the 41 positive on the IGM, on my IGG I have tested 41 and 31,34,39 sometimes with bands, sometimes with just IND. I find the results confusing. My LLMD says I have Lyme and Babesia, my babs test came back with a IGG 40 and IGM <20 which is negative...I'm not always sure I have Babesia. If anyone out there would like to share there complete Igenex results ---I'd love to see if they look similar. My personal email is in my profile.
Posted 9/22/2013 5:43 PM (GMT 0)
forgot to ask-where are you located, could you email me the name of that money hungry LLMD? I am beginning to wonder about the motives of mine
Posted 9/22/2013 6:46 PM (GMT 0)
Band 41 also cross reacts with syphilis. Any decent doctor should know this and test you for syphilis.
Posted 9/22/2013 6:55 PM (GMT 0)
NEVER take a Western Blot earlier than 6 weeks AFTER FINISHING a course of antibiotics. Tetracycline and macrolide antibiotics STOP ANTIGEN PRODUCTION (the bands the Lyme Western Blot tests for) or you will be test negative for Lyme. Doxycycline is a tetracycline class antibiotic.
Posted 9/22/2013 10:49 PM (GMT 0)
All very interesting - and so sad - so needless!  My regular dr did test me for syphilis - even though my DH and I hav been together for 23 years - it was negative. 

I suspect Lyme and bartonella based on my symptoms - but for me what is so weird is I have never had joint pain, brain fog, etc - any of those more "typical" symptoms.  But plenty enough muscle aches, huge stomach issues, crashing fatigue, etc.  I realize how fortunate I am in that regard and I still am struggling. 

I am confident I will find a good dr - and am in that process now. This is all so hard - as you know and so darn unnecessary - everyone should be able to get the medical treatment they need without have to move mountains, mortgage their homes, etc. I know you all can relate. 

 

Posted 9/23/2013 11:52 AM (GMT 0)

I too belong to the 41 club...

Few months later I tested positif on a Elispot LTT test

Posted 9/23/2013 1:27 PM (GMT 0)
Good Morning,

I tested positive for band 41 only, but my babesia test came back positive. The positive babesia supported at least a clinical diagnosis of lyme.  When retested about 4 months after oral antibiotics more bands returned positive.

Anna

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