posted
Just wanting to get some input and advice. I've seen on here both labs recommended for Lyme testing. Somebody posted that Adv Lab Services takes her insurance. Not sure how that works if they also require a check with lab.
My WB came back one positive band (P23 IGM antibody) and my CD-57 is low (54).. All rest negative.
I will see my PCP tomorrow. AdvLab says that in order to have the test, you must be antibiotic free for a month and testing during "active phase" is optimal. I don't want to start antibiotics til I know better. Not sure if my PCP will treat on one band or not. I am in my "active phase" right now as well. had a seizure yesterday.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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map1131
Frequent Contributor (5K+ posts)
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posted
Some people have tried and tried for positive anti-bodies WB. I did with Lab Corp 3 times.
It wasn't until I did 6 weeks of IV Rocephin(useless) and 2 weeks later had an appt with LLMD and did Igenex that I got 11 bands +/- or +++.
So maybe the 6 weeks that insurance would pay for IV after 2 yrs of oral abx was a good thing.....because I finally had the lyme anti-bodies galore to show.
My PCP was happy because he had stuck his neck out for me with only negative for so long. In fact he was giddy even though he would of bet money he was on target from day one. Dx probable Lyme disease became history of Lyme.
Many with positive WB still can't find a doctor(non LLMD) to hang in there for the long haul.
I'm sorry you are having seizures. That has got to be so unbelievably scary for you. Stirring up the bad guys does help get them back into the bloodstream sometimes.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Do you think I should ask for the antibiotics then another WB test OR try to get tested through AdvLab before or after antibiotics?
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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posted
If you can afford it, I would do the Advanced Labs culture test, especially if you are symptomatic.
My LLMD said that a positive Advanced Labs, " you can take to the bank." He said that a positive culture is very hard to refute.
Posts: 331 | From West Coast | Registered: Jan 2012
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posted
Advanced Labs is run pretty much like the IGeneX lab as far a payment. You pay up front, get receipt, hope insurance pays for it when you file it yourself. They are boasting about their updated New Borrelia Test Panels available Aug 1, 2012. Is this better than or comparable to IGeneX do you think?
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Advanced Labs is a CULTURE test. They try to grow borrelia spirochetes from "eggs" in your blood.
IgeneX is an "expanded" Western Blot. It's looking for antibodies, (just like the garbage ELISA), but it shows a few more bands,that are helpful for a diagnosis.
If you can get a Positive Culture Test (Advanced) - even the Insurance Companies would have trouble trying to deny your care! This is why you "can take it to the bank." Advanced labs sends folks a photo of the spirochetes grown from the sample, which is taken under a microscope. A Positive is UNDENIABLE!
If you have mostly neuro symptoms, you will likely want to try IV (which crosses the blood/brain barrier best) ... but which costs about $3K a month. Most folks need to be on IV for many months to get results. (See: Dr. S study) This is why insurers are fighting lyme claims left and right.
I wish you best luck. And HAPPY BIRTHDAY! Posts: 1432 | From New Jersey | Registered: Jan 2012
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-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Map1311 -
That's a mighty interesting story!
You did 2 years of ORALS but couldn't get a Positive test - then did just 6 weeks of IV and Voila!
Shouldn't that tell you something about the efficacy of the IV abx?
You may not have noticed any difference in your symptoms at such an early stage in your IV treatment. (Hence your assessment that it was "worthless.")
But the Dr. S. study on IV and neuro Lyme showed that most folks don't even start to "feel results" unless/until they have done IV for at least FOUR months. His study conclusions were that most patients need between 25 - 52 weeks of IV to resolve neuro symptoms, and stay rid of them.
Dr. S treats until symptoms resolve, and then treats an additional 2 months. Makes sense to me... given the long history of "relapse" in the typically "undertreated" Lyme patient.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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My symptoms were so severe beginning Feb 2011. I was given low-dose steroids at beginning with dx that it was Bell's Palsy or Shingles.
Early Neurologist tried to give me Cymbalta for migraines. Put me in the hospital with severe convulsions. I swore off meds til I KNEW what I had. The Neurologists do not like me for that, but.. too bad.. I do take the supplements Magn, B12injections and all the other "usuals" that Drs recommend. I'm up and around this year, but only learning the depths of Lyme since Sept this year. I didn't know there was a 4wk cycle to the bugger. I kept thinking it was Perimenopause (which also can have neuro symptoms etc.) Now with the one positive, I feel more vindicated, but still feel like the BIG BATTLE is just beginning.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I would say since you already did the Western Blot and had a lyme-specific band show up, that will be enough for a LLMD in the future. So I would go with the advanced lab culture if you can afford it.
What type of seizures are you having? I am also having some and I'm wondering if they are similar to what I'm experiencing.
If you cannot get a positive on the Advanced Labs, the Igenex is a good back up. But your body may be too worn out (from fighting the infection) to MAKE antibodies, and this is a big part of the reason why antibody tests fail.
The other option, esp. for neuro symptoms, is a spinal tap. But the results are lousy (positive in about 13%!), and not exactly without risk. Advanced Labs blood test is far less intrusive.
BTW, WELCOME! This is absolutely one of the BEST Lyme website communities on the web! I wish I had found it 5 years ago.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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map1131
Frequent Contributor (5K+ posts)
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Aunty, I called 6 weeks of IV worthless. A great % of insurance companies will only pay for that amount.
I was ill and disabled. Bringing in no money. $3000 a month is not an option for a majority of people.
You must compare apples to apples. Igenex testing vs Lab Corp. Back 10-13 years ago Lab Corp wouldn't known an lyme anti-body if it bite them in the arse. I believe they have improved their testing somewhat.
IVs are not the cure all, end all for lyme & co. Seen too many failures and too many relapses over the years.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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posted
Kentucky, so many can't get that positive test. From what I've read over the years abx can get the anti-bodies on the run.
Some say 2 weeks with no abx and then maybe? I know nothing about this culture test. I completely understand how you are feeling.
You want an absolute test and then you will know you are traveling down the right path. I wish it was so simple. If it was just "lyme" and no other viruses, parasites, protozoa, or co-infections.....all these would be so much easier.
It's such a large picture and it takes years to fill in all the unknowns. Very frustrating. I know how scary the money situation can be. Paying out of pocket is just something that comes with the illness.
My bests tx over the years were not insurance covered. Vits, supps, body work, rife, non tradional med docs (voodoo). It hurts.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
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Map1311-
6 weeks of IV is 2 weeks more than most insurers will pay around here. I understand your frustration, I think, because my Mom only got 28 days - and now she's supposedly "cured" of Lyme but has "alzheimers." ROYT!
I realize that IV is not the cure all/end all for everyone ... but the latest studies with IV and neuro lyme would indicate that 6 weeks does next to nothing towards beating back this insidious infection.
For those extremely FEW patients who get more than a few months of IV and are still sick, I tend to agree with Dr. H's latest theory, that TBDs present a "spectrum" of disease, whereby most folks suffer from multiple infections, that have severely compromised the immune system.
I wish you only the best in your pursuit of returned good health.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Well I do have an appt w an LLMD in Nov. I know that they will consider the one pos WB as a positive. I also have the "positive" CD-57 indicator.
After a great deal of stressing about the AdvLab costs, we decided to do it. I don't know how we'll pay for it yet. Maybe money will drop out of the sky.
I had my PCP appt yesterday and I knew going in .. thanks to all the support here... that it would be iffy bc of the guidelines.
My PCP called it a "false positive" WB test. We discussed briefly the "issue" with that. She admitted she's not keeping up with the details on this issue but has to follow procedures. She's open-minded enough to order what I want so far, so she ordered the AdvLab kit for me. I am really hoping it will come tmrw so I can get drawn in my "active" phase, and not on meds.
I really hate to admit that I am praying for overwhelming confirmation on this simply bc I do not know where else to look. At least I will have a name to the monster to battle.
"They" (the Neurologists) still want me to do psychiatric evaluation and still waiting on Cleveland Clinic's decision to take me. I am frustrated. Ugh. AuntyLynn, I am stepping up my fishoil intake. I've balked at that before, but read somewhere on here about the benefits, so decided to do that this week. thnx
My reason for balking is that I have problems swallowing large pills. Now that I get smaller pills--more expensive--and have to take more, I do it.
Also thanks too for the input about the diffrnces of testing. It really helped me. Also, with the newness of the AdvLab testing (Aug 1, 2012)and it being in PA, I feel it's best. I have friends in PA that are reporting great strides in Chronic Lyme awareness. Even my PCP mentioned that when she saw the site to order the kit. "Ah, Pennsylvania.. I hear they are really up on all this." So, that could be a good thing.
As for my seizures, Summer3, oftentimes they are triggered by live singing at church. I avoided church this week bc I already knew I was feeling hinky this week. I still had one Sunday afternoon.
There is no pattern really. Sometimes I'm very draggy and at church, the singing triggers it. This week, I wasn't draggy at all, I woke up, feeling weird all over. I knew something was up. I'd already had sound issues the previous couple of days. So, I decided to stay home.
But I was wound up. I describe it like a balloon blown up and let go. Or like the Energizer Bunny on steroids. I am "too" energetic and can't sit still. I played "The Swedish Chef" this week. I tried to focus on making lunch and had no fine moter skills. Pots n Pans flying, gittery. Then, when we sit down to eat, the "rollercoaster" begins. I get very dull headed, speech, droop to the right, rub my left hand and leg on something nonstop and then the EXTREME NEEEEEED to squash my head (rt side). I rub and squish at my head.
(I am not in any pain with the seizures and I do not loose consciousness. I was already extremely achy all over, but that started on Sat and morning are much worse with the achiness.. Severe achiness and sore back/neck.)
My worse seizures last year also involved extreme rt body shaking.. My rt shoulderblade muscle would be a ROCK. I had one in my chiropractor's office and he was astonished by how tight the muscle got. He rubbed me so hard during the whole thing that HE was worn out afterward. I could barely feel him rubbing it.
I call it a 'rollercoaster' because it is a ride I cannot control. I just have to ride them out until it's over.
Afterward, I am extremely lethargic and VERY HUNGRY. Sometimes it takes me hours to recover, especially if I've been to church and tried to sustain it all.
I even wear earplugs.. yes it IS funny.. go ahead and laugh..earplugs at church.. but they do not help. My ears are SUPER-sensitive since I've been sick.
I've read on here where somebody loses consciousness when they have seizures. I never have. That has been a bit of an issue with the Neurologists. I know there is a significant diffrnce in their realm whether one loses consciousness or not.
I also break out in a mysterious rash at times. I had never seen it until yesterday. I was in the Dr office (no doubt stress-induced) But I've never done that before this illness. She called it hives. I saw them in the car mirror on the way home. Red flat rash all over neck and chest. I was tested for Babesia and Erhlichiosis w/ WB but they came back negative. I still wonder if I should add those onto the AdvLab test. :/
KW
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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posted
New Advanced Laboratory test after the following history. I had a positive western blot in Jan of 2011. Treated with abx for one month. After stopped, felt much worse, Rheumatologist told me I did not have any more. With much investigation, believe I have had since 1996.( Reason for IBS, Fibromyalsia, thyroid problems, eye problems, aggravated ADD etc) Finally found Lyme MD.. CD-57 was very low, Some advanced testing came back neg ( SpiroStat, ) Finally had the Advanced Lab CULTURE test. Within 2 weeks got back results. POSITIVE with pictures to prove it. I did go off all meds was taking for lyme including naturopathic for a month before the test. Feeling really lousy now but have the proof for all docs, insurance etc that I indeed have lyme in my body, not just effects from past exposure. I can tell you my insurance will not cover it yet, though I am fighting it. Gather because the CDC for FDA or whomever, hasn't given its seal of approval. Also, as I am a few days from medicare - I believe that lab does not accept medicare and you would therefore not be able to get any coverage. We are trying to decide how to proceed. My doc wants me to go on coffee enema- I have yet to start as have many reservations.
I do believe if you really want to get to bottom if you have lyme or not, forgo all the other testing - I have spent over $ 800 besides the advance lab and go for this new Lyme culture. It is worth it. The results are undeniable.
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had a seizure yesterday.
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thanks
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