Ongoing fight

Hi Marine,

Sorry you are getting the oh-so-common run around without a clear diagnosis.

Usually a Lyme Literate Doctor (one associated with ILADS) will diagnose you clinically, using the tests for advisement only.
Is the doctor willing to treat you given the information they have? If you had a Herxheimer reaction on being treated that would be a clear indication that you have Lyme.

I hope you will continue to pursue this.

Hi Marine,
Welcome to our community! I'm so sorry that you have gotten the run around, as Achievinggrace has said.

Have you read through our "New to Lyme? Start here!" thread yet? I'm confident that you will find a lot of really helpful information there, including symptom lists, helpful links, detoxing suggestions, and more.

about the tests - the ELISA is a non-starter. It's sensitivity to the immune response to this bacteria is very low (poor). It will only detect about 30% (if that) of those that are actually infected. The Western Blot isn't much better, because it is based on the person having an immune response to a bacteria that suppresses the immune response - crazy!!

But, you have had an immune response that the Western Blot was able to pick up!
Band 41 is referring to the flagellin (tail) of the bacteria and can be indicative of another borrelia infection such as Pinta and Yaws, relapsing fever or others.

Bands 23 - 25 are specific for Lyme disease though. It indicates Osp C (Outer surface protein 'C').

Band 31 indicates Bartonella Hensley.

Band 34 is specific to Lyme disease. It indicates OspB (Outer Surface Protein 'B')

Band 39 is specific to Lyme as well. It indicates BmpA (Bacterial Membrane Protein 'A')

So there's little doubt actually about the fact that you have Lyme and Bartonella, although many doctors will not treat because of these results, it's only because they are uneducated.

If you are happy with your LLMD, and they were educated by ILADS (International Lyme and Associated Diseases Society), then I would encourage you to stick with them for your treatments - but continue to educate yourself on these infections.

We are here to help answer questions, give suggestions and to help you understand these things better!!

Any of the bands that I said were specific to Lyme disease (all of yours except band 41) will not cross react. They are 'specific' to the Lyme bacteria- it's the only thing that makes them a IND or positive.

Also, as Pictureofhealth said - the IND means Indeterminate. It's positive, just not quite enough of a reaction for the lab techs to say "positive".

If you can't get the treatment you need through the VA, I would highly encourage you to find help outside of the VA. We can help you find a LLMD here when you are ready.

You might want to print out and take along either one or both of these articles:
www.ilads.org/lyme/treatment-guideline.php

www.lymeneteurope.org/files/burrascano-lyme-guidelines-october-2008.pdf

They are both from the "New to Lyme?" thread if you need to find them again.

Be sure to let us know how your next appt goes!

Actually, the Western Blot isn't accurate enough to determine what stage of the infection you may be in. That would go by your symptoms. You can find symptom lists in the "New to Lyme?" thread that sits at the top of the forum.

Which state and what section of that state are you hoping to find a LLMD? I have some referrals. If you send me an email, I'll be happy to share whatever referrals I do have - and the members here can be a big help too! I would suggest that you start a new thread with the title something like this: :"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

I lived in CA, and ID when I was first infected at the age of 7- then I lived in AZ, AR, IN, IL, & MO!

Marine, are any of your two primary care doctors Lyme literate though? It really does make a difference. Since they're running Labcorp, I would guess they're not...

This is a positive test, to me.

2014 Western Blot IGM/IGG (IGenex):
======IGM======
18 kDa: +
**23-25 kDa: +
30 kDa: +
**31 kDa: IND
**39 kDa: +
**41 kDa: IND
66 kDa: +
**83-93 kDa: IND

Please seek out a LLMD, have you tried this link?

http://ilads.org/ilads_media/physician-referral/

 

sarahm620 said...

Marine, are any of your two primary care doctors Lyme literate though? It really does make a difference. Since they're running Labcorp, I would guess they're not...

This is a positive test, to me.

2014 Western Blot IGM/IGG (IGenex):
======IGM======
18 kDa: +
**23-25 kDa: +
30 kDa: +
**31 kDa: IND
**39 kDa: +
**41 kDa: IND
66 kDa: +
**83-93 kDa: IND

Please seek out a LLMD, have you tried this link?

Yes Sarah, I have seen a Lyme Literate doctor in 2009 when my military doctors couldn't figure out what was going on I was having some crazy barrage of symptoms and I pretty much felt like I was going to die at that time, he is the one that ordered the IGenex Western Blot.
But long story short, I am dealing with lingering symptoms some which started initially in 2005 and the crazy ones like the heart and eye involvement which started in 2009. The problem is the VA doctors do not seem to recognize IGenex as a "reliable" laboratory. 2014, I seen an Infectious Disease specialist that told me that it seems as if every single person that gets labs done with IGenex always comes back positive in some way or another while competing labs show just the opposite. Then he proceeded to tell me that the 2 months of Minocycline and Rifampin that I did last year, "should of killed any and all Lyme and I should no longer have it anymore".
I obviously didn't take any of this to heart, I believe NOTHING until it is proven and that goes for both sides. Which brings me here. I have had QUITE a workup of labs, xrays, CT, and MRIs. None of it has been adding up, but the military sure loves pushing pills before finding an actual answer.

_Marine_ said...
I obviously didn't take any of this to heart, I believe NOTHING until it is proven and that goes for both sides.

I'm not really sure what proof you are going to be able to find on either side of the Lyme debate. Most of the studies that the Infectious Disease Doctors are working off of seem to be both limited and flawed. And the evidence supporting the ILADS approach to fighting Lyme is anecdotal and empirical, which is suitable in that this is a disease that needs to be fought by assessing the individual's unique situation and re-evaluated continually as the healing process progresses.

Whether the tests for Lyme are accurate or inaccurate cannot be proven at this point because you would need an accurate test to establish that! Evidence points to their inaccuracy because people who test negative are treated and recover.

If you haven't already read this report written by a task force of the Virginia Governor's office, I think you will find it very informative. /www.vdh.virginia.gov/epidemiology/DEE/Vectorborne/Governor%20Lyme%20Disease%20Task%20Force%20Report.pdf

I hope you are able to get good treatment soon.

It is not that I haven't seen all of this evidence all over the Net in articles and on forums about the science of Lyme or patients history with Lyme. A lot of the science and other patient's history my issues almost match up completely. I have had tick exposure multiple times. But I will always remain a skeptic until legitimate unwavering evidence is presented ( you could say I have had one too many Psych classes ).

I have told "my story" to every doctor and specialist that took the time to sit there and listen to everything I could remember in the exact order I could remember it in because I myself have sifted through my entire military history trying to find specific days for when infections may have happened.

I know this is such a huge debatable matter, but these labs should be out for the truth and out to help people. I am sure their testing methods are as out of date as the CDC's map of Lyme was back in 2009. Now I have seen doctors all over the Pacific Northwest I can tell you besides the ILADS doctor I seen from 2009 to 2015. Not a single doctor on this side of the country that wasn't an ILADS doctor has ever heard of or seen IGenex labs.
So IGenex needs to get their tails out here to the West Coast and impress some people with their knowledge. If they really are the lead in testing for tick-borne diseases, they need to publicly disprove LabCorp and Quest because on this side of the country those two labs are known and trusted by every doctor I have seen.

I am hoping this ID specialist is familiar with Lyme in our area. According to this "new doctor" of mine, she is very well known in this entire region. So who knows...

As a side note:
If the doctors that truly believe Chronic Lyme is a myth, because that has been told to me as well then the best thing you could as a doctor/scientist would be to go get yourself infected with a Lyme carrying tick. Let it go untreated for maybe a good year and then see how your 14 - 30 days of a single antibiotic holds up.

I miss scientists that actually had some balls back in the day. Now a days they are either too scared of politics or taking bribes to keep quiet.

Post Edited (_Marine_) : 4/11/2015 2:16:24 PM (GMT-6)

Oh I have contacted them before, initially in 2009 when this ordeal came about and I seen my first LLMD and I started getting doctors that wouldn't agree. I emailed IGenex about questions of the lab they had done. I can't recall the conversation though, not even sure I still have that email.

Oh I know no one here is pushing anything on me. I am a very logical person and am very experienced with troubleshooting complicated systems. Such as computers/electronics. But I must stay in-between the lines and not take sides because there are way too many variables to immediately say "this is the direct cause of that". I know Lyme is a tricky bugger, but so are many others.

At least I know If I hit a dead end with these docs, I still have a few refills of Minocycline.


FYI back in October 2014. The day I had my blood drawn for that 2014 Lyme Western Blot with IGenex as shown in my previous post. I started Mino and Rifampin later that day after that blood draw. 5 days later started feeling WAY less fatigued and muscle spasms started to go away, day 6 was the same way, as was day 7. But day 7 my appendix suddenly ruptured maybe an hour or two after taking the antibiotics. Was rushed to the ER, it was fun times.

Well the doctors I seen after that said the antibiotics should not have caused that. But I wasn't convinced, I dont believe in co-incidence. 7 days after taking dual doses of antibiotics my appendix ruptures just after I started feeling healthier. Something I hadn't felt for consistently 6 years.

But yes I had a positive reaction overall to those two antibiotics.

What was funny was just two weeks before the appendix rupture, I was having really inconsistent bowel issues and there was a few days when I had chronic diarrhea. They did a CT after I drank 950mL of barium and found nothing again. I had been getting pain under the lower left side of my rib cage just where my stomach or spleen sits for about a week when they did that CT.

Traveler, did you ever go on antivirals for like the EBV? If so, did it help with symptoms at all? That new doc wants me to do high dose for 10 days.

I may give the antivirals a shot since it would only be 10 days. I may wait until I speak with the I.D. Specialist depending on how long it takes to schedule that visit.
I have tried L-Lysine before and didn't notice too much with it. But something else you may want to give a shot if you haven't already (that is suppose to have some antiviral properties) is Olive Leaf Extract. My body responded to that a few times when I took it.

Have you ever had a brain MRI done on you by chance?
I had one done back in 2009 when my symptoms were all over the place because a PA I seen wanted to check me for M.S. after complaining about tingling, loss of sensation in my feet and hands, and some other neuro issues.

my brain MRI read something along the lines of:
" there is a 2mm hyper intensity in the right frontal deep white matter on T2 weighted and FLAIR images"

This MRI was taken after the first "Anxiety attack" episode I had. I say "anxiety attack" because that is what the ER diagnosed it as. But in no way is that remotely true, the situation and environment in which it happened would be the furthest thing from panic. Anyways, I had about 6-8 more of those episodes spread over the next few months, it took the next episode an entire month to re-present itself. Later that year I was convinced I was going to die because they couldn't figure anything out.

"It was like a panic attack on steroids that would last for hours." - yep, same here and I couldn't figure out why for the life of me!! All I was asked to do was have the fluids checked on my car before I made a long trip! It was something that I could have easily done myself (and did to avoid another panic attack), so it shouldn't have made me feel like that!! That was only the first of many like that though.

Yes, I've had brain MRI's done - I even have one set of the pictures on a CD here at the house!! I asked the doc for a copy and he made me that!! Some docs can be pretty cool.

But back to your question - the doc said that I "had more lesions than someone your age should", and the report said something like what yours said. I'd have to go digging to find it again - sorry.

about the L-Lysine, it takes large doses for several weeks when my EBV is really affecting me. I take 3,000 mgs three times a day then taper off when symptoms subside. So using the antiviral is much faster, although not always better for all of us.