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New arrival, a few basic and advanced questions re western blot

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Posted 9/6/2011 3:33 AM (GMT 0)
I'll try to be as brief as possible, as I have a tendency to get way too wordy and write little novels and lose the questions in the details.

I am recently coming to realize my many years of varied, odd and confounding symptoms, which have baffled the dozens of doctors I have seen in my area where Lyme is not endemic (I spend my summers where it is common), are a screamingly obvious fit for Lyme disease. My PCP knows nothing, but has been willing to entertain my theories thus far. I got him to sign off on a western blot from IGeneX, but got results that left more questions than answers. Relevant info is as follows, I left out negative bands:

IgG:
31 kDa
IND
34 kDa IND
39 kDa IND
41 KdA ++
58 kDa +

IgM:
18 kDa
++
31 kDa IND
34 kDa IND
39 kDa IND
41 kDa +
66 kDa +
83-93
kDa IND

This of course is a negative result according to both the CDC and
IGeneX classifications. After some research it looks like this is still a useful
source of information, but I don't know how to proceed.

Could a person who has
never been exposed to Lyme have this much show up on the blot test?

I am under the impression that these results clearly demonstrate SOME exposure
to Lyme; can anyone tell me if this is correct?

I read sources talking
about the "fingerprint" bands, of which I have one clear positive (#18), but I could
find no study that explains this. Are these fingerprint bands just anecdotal
evidence seen by experienced LLMDs or is there hard data that demonstrates them?



I am in the midst of a very acute, very long flare during what may be a 10+ year
infection; could this result in the number IND bands shown? Would an antibiotic challenge be a useful expenditure of time to convert some of these to positive?

Is there a competent LLMD anywhere in the upstate NY area?

Any help at all would be
greatly appreciated at this point.

Thanks in advance.

Post Edited By Moderator (Traveler) : 9/6/2011 7:57:59 AM (GMT-6)

Posted 9/6/2011 8:01 AM (GMT 0)

I have a symptom sheet I've been bringing to new doctors for the past year or so; when I started looking into Lyme a few months ago I couldn't help but notice that it looked like I just copied and pasted my sheet off a list of Lyme symptoms. I have a full range of neurological and musculoskeletal symptoms with dozens of others that involve basically every system in my body (I'd be happy to transcribe it here if you think it useful). I spend lots of time engaging in his risk activities in an endemic area. I even unwittingly endured what I believe were a number of Herx reactions while on antibiotics for sinus infections, rashes, etc over the years. I suspect the total time living with the disease has been around 10 years, but I have no way to pinpoint an actual time of infection.

Recently most doctors seem to try to assign one of the typical catchall diagnoses as possible explanations (fibro, CFS, IBS, Benign Fasciculation Syndrome, Chronic Pain Syndrome, etc). None of them actually fit well enough for any doctor to actually make the diagnosis. They always just float something out there, give me a little speech about how complex these issues can be and expect me to just go away...

I live in an area with zero infected ticks and the doctors here seem even less informed than usual. My latest PCP has been very persistent and open minded as we've slogged through this all. I was hoping to have him help direct, or at least assist with my treatment. I wanted to show him something objective to convince him that I am on the right track here. I think he would be a useful ally, even if I am to be treated by a different doctor.

If I could retake the test under different circumstances and have it come back positive I don't see what else he could want for proof. Ditto if I could find a well sourced, well reviewed article explaining how the negative test result still proves exposure. Most of what I can find is very well written, very likely true, anecdotal evidence.

Maybe I shouldn't bother and just find the closest LLMD to start the process... I just need to find someone competent who hopefully isn't 600 miles away.

Posted 9/6/2011 12:17 PM (GMT 0)
Hello Spall,

Welcome to the forum.  I am so sorry it has been such a fruitless task for you to get diagnosed and treated. 

I can't encourage you enough to contact an LLMD.  Even if you have to travel a long way. 

The first thing a Lyme Literate Doctor would do would be to diagnose you clinically.  The tests are not accurate as the disease suppresses the immune systems and the test is looking for antibodies. The fact that you have so many symptoms is a very strong indication that you have Lyme, especially as you are aware that you have been exposed. 

While your symptoms may wane at time, they will not go away, especially as you have neurological symptoms. 

IMHO you should stop worrying about your test result and find an LLMD.  They can diagnose you and get you on a course of treatment that is effective and thorough.

Don't settle for those diagnoses that are just a description of symptos (Chronic Pain syndrome, fibro etc)!

For information on finding a Lyme Literate Medical Doctor(LLMD) inyour area, please email our long time member, Dan's Mother at:
[url][email protected][/url]

If you'd like more doctor suggestions, you can email stephanie at: [url][email protected][/url]  You can also go to: [url]www.turnthecorner.org/bod.htm[/url] if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search forLLMD's 3 times in a month. You have to register first. Here is thelink: [url]http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74[/url]

You will want to find an ILADS(International Lyme And AssociatedDiseases Society) doctor. The ILADS site is a great place to read toget you started on your Lyme journey.
 [url]http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html[/url] 

You can also start a new thread entitled.  "Looking for an LLMD near (name your largest big city or region)...

Keep us posted on what you are doing!

Posted 9/6/2011 12:23 PM (GMT 0)
Wondering if your PCP is willing to treat you with antibiotics based on a clinical diagnosis. The reason being is some people will test positive after treatment. The only thing is you would have to spend the money again to be tested by Igenex. Ugh. Where are you located and why are you convinced that there is no lyme in your area. It is pretty much everywhere. I think I would venture to an LLMD. If you do in fact have lyme and possibly a co-infection (did you test for them with Igenex?) you will only get sicker why wait. I feel so bad for you as it is truly a nightmare trying to get a proper diagnosis. It sounds like you have done your research not its a matter of finding the right person who can help you. Hope we can be of help to you on the forum.
Posted 9/6/2011 2:19 PM (GMT 0)
Hi Spall!
Welcome to our forum!! I am so sorry that you have been suffering with all of those symptoms for so long! Unfortunately you are not alone, many of us have had symptoms for many years before getting a diagnosis.

I went into your original post and removed where you live - this is an open forum and anyone out there can get any info you post about yourself!! We like to stress not sharing too much info in any post here. For more personal info sharing, please email the member by clicking on the small envelope under anyone's screen name. If am email address doesn't show, then that member hasn't listed their email address.

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

In that thread you will also find Dr. Joseph Burrascano's paper "Advanced Topics in Lyme Disease" that covers Lyme and the common co-infections that like to travel with Lyme. I believe this is a great place to start a solid education on Lyme and other tick-borne infections (TBI's). I printed this out and took it to my GP to read and it helped him understand a lot more. We also have links where any doctor can go to get his/her continuing education credits by learning about Tick-borne infections in the "New to Lyme?" thread if you want to pass it along to your GP.

I do have a couple of names of LLMD's that are near you - although it would still be a 5 or 6 hour drive for you. You ought to check out the links that Achievinggrace provided first though, you never know, they might have a LLMD's name that is much closer to you!

BTW- the Northeast area of the US has the highest incidence of Lyme and other TBI's than anywhere else in the country!!
Posted 9/6/2011 3:08 PM (GMT 0)

Thanks for the responses, it's pretty refreshing to have people explaining things to me instead of the otherway around for once.

I've done dozens, if not hundreds, of hours of research in the last few months. I'm up to speed on all the latest research and I'm painfully familiar with the political contraversy surrounding the disease. I am 100% certain I know more about diagnosing and treating Lyme than all of my current doctors; some have actually admitted as much. However, I have no medical background and my brain feels like it's working at about 25% capacity so I can't help but feel like I could be missing something. It sucks that I have to be my own advocate wihle having the memory of a goldfish and the attention span of a bored toddler.

I almost feel like I would be doing a disservice if I didn't push this last few weeks and get more hard data I can hold up, shake in faces of my doctors and scream "LOOK AT THIS! This is what you missed all these years!" If I get treated somewhere outside the mainstream and quietly get better then none of them will know what they did wrong. All the same people will let the same thing happen again, stealing years from someone else's life.

Maybe I'm delusional, maybe I can't help them become better at what they do. I'm a writer... maybe I'm just naturally hunting for more conflict and an opportunity for character growth as it'll make a better story in the end. In the end my obligations will be to my family and not some sense of duty to people I don't know, but I think maybe I can do justice to both still.

Posted 9/6/2011 8:35 PM (GMT 0)
Of course you need to do what you feel you have to do. I would suggest, however, that you consider saving what energy and strength you have for the real battle here: your battle against Lyme. Stress is not your friend at the moment -- if it ever is!

Another consideration is that you are, by your own confession, not thinking clearly. We Lymies are often given to rages and outbursts as well as obsessive impassioned thinking. You might find that you present a better case to the doctors once you have gotten treatment and can be more to the cool and rational. Just an idea.
Posted 9/6/2011 11:15 PM (GMT 0)
I appreciate the level-headed advice. I am definitely prone to "obsessive impassioned thinking" as you call it. When I get overloaded, either by pain or frustration, I never have outbursts or go into a rage. It's my natural response to try to either shut down or try to think my way out of it. Hyper rationality and over analysis are my most effective coping skills and it feels good to be able to type out a fully cogent rational thought, even if it does take me 10 minutes to settle on a single sentence.

I plan on doing a thorough vetting of potential doctors, at which point I think I'll pick one and actually be able to hand over the reigns. I guess it's probably silly to expect a specialist to admit they missed anything, let alone get them to learn something. I'll keep taking notes, writing my stories and keep it to myself... I'm sure it'll make an amusing magazine article some day.
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