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Avatar universal

Reactive bands on western blot

Hello, I have been feeling unwell on/off for quite a while. After developing muscular pains that was so excruciating my dr decided to test me for Lyme. After he got my results back I was told I'm healthy and Lyme was questionable but they have came to the conclusion that I in fact did not have Lyme. A year later I seem to be getting worse as far as my symptoms go and had a very hard time caring for my infant and begin to develop palps...I visited my dr again he took blood and sent me off to the rheumatologists who also ran blood test and also tested me for Lyme and again I am told all is well. After visiting countless of dr's and er visits I finally seen a cardio doc due to the palps....she tested me for Lyme and called me back a week later to tell me a few bands came back reactive. I brought that to my dr's attention and gave him a copy but he was no help and assured me that it was a false positive test. I had decided to see another physician who would be willing to listen to me and test me again and band 23kd(IGM)=reactive, band 41kd(IGG)=reactive, band 45kd(IGG)=reactive. The dr suggested I see a ID doc so he can help me further.....anyway I went back to my old dr and requested to have my copy of the blood work he has taken from me over the past 2 years and I see my first test only band 23kd(IGM) was reactive and the other bands were not reactive. The second time band 23kd(IGM), band 41kd(IGM), band 45kd(IGG) reactive...meanwhile 3 years has passed I am feeling awful to the point I have developed very serious anxiety and my dr tells me all is well....obviously it isn't.  Now the most recent test that I had band 41kd(IGM) is no longer reactive, but the other bands I have mentioned are still reactive. What does this all mean, if someone can explain or even have any answers to this? Thanks in advance!
14 Responses
Avatar universal
If you can see an LLMD it would be your best bet. I had a similar test and My bands 31, 34, 41 and 39 were positive on mine. Positive by both Igenx and European standards. But not by CDC. My PCP has called doctors but she said all of the experts tell her too it is a false positive. Which is Bull. The bands I have are specific to lyme. If you can find an LLMD. Depending on where you live and your financial situation and insurance this may be very easy or very hard,  but it is worth it if you can.

BTW, lyme is not a Dx only by testing, its clinical Dx by a physicians opinion. So you can still have it and have a negative test.

In parts of Europe the approach is often to treat with antibiotics simply upon the suspicion of lyme. The risks of the antibiotics is not very high, so many doctors believe it is best to try treatment vs potentially let a patient with lyme go untreated. Then after trying a few and seeing if it helps or not.

ALSO, there are several co infections and I have been made aware you CAN have those and NOT have lyme! My doctor suspected I have Babessia but I can't see him due to insurance issues now. So I would think CO INFECTIONS are BIG possibility for you. Find an LLMD in your state if you can, they won't give you the run arround all the others do.
1 Comments
Thank You so much for the advise. I have been a mess for almost 4 years now. It started with horrible muscular pain, and nothing really relieved the pain much. I also developed what feels like heart flutters, dizziness My ears ring and pop its just my body is totally off and has been for a while. I developed what dr's say is Gerd something I have never had.....I cannot eat certain foods, when I do my body seems like its breaking down if I do not watch what I eat...its unreal. I occasionally feel a buzzing/tingling feeling in my arm and hands and its worse with bad weather. My dr has run so many test and I have had unnecessary ct scans, mri's, xrays and all is normal.....blood work have been normal also except for the reactive bands. There are times when I have my good days, but  recently I have been under a tremendous amount of stress and I am starting to feel very awful again. I will look into finding a LLMD in my area...I really hope finally someone can give me answers and help me get on with my life.
Avatar universal
ILADS is a national site. And usually there are state sites too. Try googling "Florida lyme association" or something similar for your state. Call them and they can give you a list of doctors. In my state there are only 5, I have never found any more. It can be really confusing at first trying to find them.
3 Comments
Also try support groups, even ones out of your area might know about other lyme docs. You can google for those or ask Ilads or your state site might have a list. Anything is worth a try.

I wish you luck!
Thank You for the info I will search my state which is Florida. I have been suffering with the unknown for too long hopefully I can get some help, someone with knowledge. I'm having very bad anxiety as I type due to what feels like heart burn.
Hello,
I am also in Florida and was diagnosed with Lyme in May of 2015. Before that I had a lot of the same symptoms you have. I went to 10 different doctors and had every test you can imagine and they all said I was fine. I finally went to an LLMD after 20 months of feeling like I was dying and she diagnosed me with Lyme. I am on month 9 of treatment and am not 100% but I am 90% on most days, when I was really sick I was maybe 30% on the good days. I have read on here to not post the names of drs but if you can message me I will be glad to tell you who is treating me. There are several LLMD's in Fl but this is the only one I found that would take my insurance. Good Luck
Avatar universal
Thank You so much for responding. Yes absolutely, I would like the info on the LLMD you are seeing. I have suffered on/off for so long now. How do I message you?
Avatar universal
Hello, I commented back under your comment....I am not sure you will be notified, but just incase I figured I would just reply to your comment. Yes I would love the contact number of the LLMD who is now treating you. I have been looking help for so long now. I also have my good days and bad day...my current pcp is treating me with doxycycline as much as he can, but I do not think it is enough. Again thank you for your response!!
Avatar universal
About finding private messages from others posting here:

Scroll up to the top of this page.

You will see a blue band with some buttons in it.  

One of them says "My MedHelp".  Click it.

A short menu will drop down, and one of the selections is "Inbox".  If there is a message waiting for you, there will be a number next to the label "Inbox", like this:                  Inbox (1)

Click on that, and the private message sent to you by someone else here will open up.

Until you know where the message is, it can be hard to locate -- like a freeway with off ramps but no signs.  :)   Let us know if you have any problems with it.  
Avatar universal
Hello,

Sorry I haven't responded, if I did it right I sent you a message with dr name in it, if I didn't do it right let me know. I hope you are close enough to them to go there. They are good and I believe they genuinly care, something I can't say about many drs.

Avatar universal
Hi, thanks again for the response. However I did not get your pm. Maybe I can try pm you. Hopefully I get it right.
Avatar universal
Thank You, I am going to try it out now. I hope I get it right.
Avatar universal
I was just now reading through some of the posts above and would like to add on a bit to your comment that

"my current pcp is treating me with doxycycline as much as he can, but I do not think it is enough."

You have hit on an important sign of 'old think' versus 'new think' when it comes to Lyme docs:  Doxycycline [doxy for short] is a golden oldie among the various treatments for Lyme, and while it still has its uses, doxy is (so I read) not particularly effective against any Lyme infection *unless* it is a very, very recent infection.  

Why?  Because Lyme bacteria have the ability to hide in areas of the body which the immune system doesn't easily reach.  In the earliest stages of a Lyme infection, the Lyme bacteria are found in the blood stream and other places that the human immune system can easily reach, so the immune system has a decent shot at killing off the Lyme early.

After a fairly short while after the initial Lyme infection, tho, the human immune system (having evolved over thousands of years) shrugs and figures that the Lyme bacteria (like almost all other bacteria) have been killed off, and the immune system packs up and goes home for a well deserved rest in the body.

Well ... Lyme didn't agree to those rules, and it keeps on fighting and taking over a patient's body long past what other, more common bacteria would have given up and been beat to death by the human immune system.  Lyme has a very long life compared to other bacteria we are used to, and Lyme also has the ability to hide in areas called in slimy areas called 'biofilms', which the human immune system can't easily penetrate to kill the Lyme bacteria.  

Result:  Lyme bacteria, hiding from the human immune system and living far longer than regular bacteria, are often not killed when doxycycline treatment is given to humans for a couple of weeks.  As a result, Lyme settles in for the long haul:  chronic Lyme disease.

This is, to my reading, the main and most serious difference between

     'old think' MDs -- who believe a couple weeks of doxycycline is enough to kill off a Lyme infection, and any continuing symptoms are just your immune system over-reacting to a now-dead infection of Lyme and other companion ailments -- versus

     'new think' MDs -- who know that Lyme has a very long life cycle compared to other, regular bacterial infections and are able to hide in biofilms and other areas of the body that are not easily reached by the human blood stream and the immune system.

As a result, if given a few weeks of doxycycline and still are not feeling right, I would find Lyme specialist without delay.  You don't need to tell your current MD that you are getting a second opinion, but I would go have a visit with a Lyme doc, taking with you copies of your tests from the other doc.

Someday this will all be sorted out, but for now, just be aware of the split in the medical community and take care to look out for yourself.  Let us know how we can help ... it's a dirty trick for Mother Nature to pull on us when we feel so lousy, but it's worth the fight to get well again.  
Avatar universal
Its so awful for me. I felt better last year, but I have been under a lot of stress since the new year began and have been feeling so awful again. My dr did prescribe doxy and I was taken them for almost 2 weeks and stopped due to a UTI and was prescribed Cipro for 10 days. The dr did tell me to take both doxy and Cipro, but I refused to take them both together, and this is the reason I discontinued the doxy. Since discontinuing the doxy I feel horrible.....I had very bad anxiety today to the point that I almost lost it. I started back exercising 35 min on the treadmill and since I have started that I'm having severe muscular stiffness and pain. I was diagnosed with Gerd which I have never had before, but recently it hasn't been a problem, now its really bad.....somehow I have developed hiccups. Its very scary feeling like this I'm experiencing bouts of dizziness, and I have no idea what to do anymore. At the moment money is so tight and I was told LLMD do not accept insurance. Thank You for your response it was very knowledgeable!!
Avatar universal
I'm in the same boat as you on the finances and insurance right now. I never did hear back from the only organization who said they would call me if they found any way for me to apply for the funding. I left 2 messages and they have not called. So I am afraid they came up empty as well. :'(

Finally I did hear something from the LLMD's office. I can get an appointment with this other doctor in the same office who is NOT an LLMD, in July. I took the appointment for now but I've no clue if it is going to work. I also asked for a referral to a rheumatologist. Will see if I have any success.

It can be really hard to find an LLMD. Keep looking but in the mean time I guess it cant hurt to try the lesser options that are available, its better than doing nothing. If one doesn't work find another. Maybe we will be lucky enough to find an open minded doctor.

Do lots of research on lyme, if you find an open minded doctor any you have a fair bit of knowledge you might be able to help direct your treatment a bit, requesting to try antibiotics other than doxy, and providing the newer information so he/she can study it. You can make a suggestion, and the doctor can say if he is comfortable with it or its safety in her opinion.

Also make sure you call and find all the charities in your state and search for every doctor that is an LLMD. If you still come up empty its worth trying other things.

I wish you luck and health!
1 Comments
Its so awful for me. Thanks and I wish you luck as well.
Avatar universal
... and to Katya4 also:

One of you says above:  "My dr did prescribe doxy and I was taken them for almost 2 weeks and stopped due to a UTI and was prescribed Cipro for 10 days. The dr did tell me to take both doxy and Cipro, but I refused to take them both together, and this is the reason I discontinued the doxy."  

==>>  When an MD tells you to take meds in a certain pattern (at what dose, how often, with/without food, etc.), please do NOT freelance as outlined above:  

     ***Follow the doc's instructions and do not change them without first consulting with the MD and getting the doc's okay.  If you are having a reaction to the meds *as prescribed*, the doc MUST be in the loop.  This is extremely important.***

You say, "Since discontinuing the doxy I feel horrible....." -- that may be the infection rising up again.  Please do not change any meds or doses without the MD's okay.  Call the doc's office and report your reactions and ask what to do about it.  Then follow the doc's instructions.

You say:  "I had very bad anxiety today to the point that I almost lost it."  Tell the doc or leave a message for him/her about this as well.

You say:  "I started back exercising 35 min on the treadmill and since I have started that I'm having severe muscular stiffness and pain."  That may be the result of the Lyme bacteria dying off.  Again:  tell your doc.

You say:  "I was diagnosed with Gerd which I have never had before, but recently it hasn't been a problem, now its really bad.....somehow I have developed hiccups. Its very scary feeling like this I'm experiencing bouts of dizziness, and I have no idea what to do anymore."  ***Call the doc.***

You say:  "At the moment money is so tight and I was told LLMD do not accept insurance."  Some Lyme docs accept insurance, but some do not.  If you do have insurance, then it can work quite well for you to pay your doc (or promise him you will do so soon), and then ask the doc to give you a bill from the doc, and addressed to you the patient -- NOT to the insurance company.  Then YOU send the bill to your insurance company, and the insurance company may well reimburse you for some or all of the amount the doc billed you for.

Why do this?  Because it keeps the insurance company at arm's length from dealing with the Lyme doc, and for 'political' reasons, some MDs do not want their names showing up on any bills indicating that the MD is treating Lyme.  There are still too many state and local medical boards who will crack down on MDs who treat Lyme aggressively, and in some states, a doc can lose his/her medical license if the medical board in the doc's state determines that treating Lyme with extended antibiotic treatment is wrong.  

By having no treatment paper trail between the Lyme doc and the insurance company (since it is all routed through you, the patient), everybody gets what they want:  you get treated, you get reimbursed by your insurance company, and the insurance company does not do business directly with the Lyme doc.  Sounds crazy, but in some states, it's the best way to go.
Avatar universal
See my post to you and to diamond girl about billing issues.  It should be just above this post.
1 Comments
@jackiCalifornia thanks for the info. I didn't think about the possibilities of lyme reaction after stopping the doxy.
Avatar universal
... And keep in mind that stopping the meds too soon could just make the Lyme bacteria stronger.  That's why it's important to kill the bacteria off entirely and not let them spring back.  Pls consider seeing either your current doc or a new one, just to be sure.  Lyme can be beaten:  my family member and I are clear of Lyme and a co-infection we both had, so I know for certain it can be done.  Depending on several variables, it can take longer or shorter time, but it CAN be done.  Go for it!  Keep us posted, okay?
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