I am pretty new here and I have some questions that hopefully someone can help me get to the bottom of.
I have been sick for over a year. Neuropathy / neuralgia, cognitive dysfunction, intermittent arthritis, headaches, fatigue, palpitations, abnormal skin sensations, audio hypersensitivity, bladder dysfxn...you name it, I've got it. I never thought it could be Lyme because I was uneducated about the topic.
However, I went to a doctor who works in an office that was mentioned (though not in super-shining terms) on the LLMD list in Quakertown and he suggested Lyme. A lightbulb came on in my head! With some research, I realized that all of my symptoms can be accounted for by Lyme and/or coinfection. Got the bloodwork done.
My WB IgM P23 was "Present -- Abnormal", and my Vit D was 18. The med assistant that gave me the results over the phone said it was Lyme.
But today my doc called and said it isn't Lyme because my CD-57 cells were 116 and my C-6 Peptide antibodies were normal. He said clinically it looks like Lyme but can't be because of the bloodwork.
But then how would I have a positive in a Lyme-specific band on the WB??? And manifest all these symptoms but NOT have Lyme?!?!?
I just want to cry because now he's saying maybe it's a HHV-6 or HHV-8 or something else.
I thought I had finally found the answer to the mystery illness that is destroying my brain and body, only to have it swept out from under me, leaving me flat on my a** again.
Overall, I have a good amount of faith in this doc. He did mention IV abx and said he agrees w/ the Alternative Lyme Dx criteria as opposed to the CDC criteria. He's knowledgeable about supplements and all that. He said if we are sure it's Lyme and have ruled out everything else, we'll treat for Lyme anyway. But I am afraid he is letting one test's importance outweigh another's. And I am losing more of myself every day...I don't want to wait any longer than I absolutely have to.
Could *I* be misunderstanding the significance of a + P23?
Can anyone offer me some input here? Please??? I feel 3/4 devastated, 1/4 shocked.
Posts: 8 | From Pocono Mtns, Pennsylvania | Registered: Dec 2009
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
No, you're not misunderstanding. Your doctor is making a big mistake. Treatment should begin "yesterday." You need treatment for Lyme Disease.
You can't be "sure" it's Lyme 100%, but you sure as hell can't use the CD-57 or C6 to rule it in or out. Those two tests combined are exceedingly weak "circumstantial" evidence at best. A 23kd IGM alone is massive evidence. Was this even an Igenex test? If not, then it's worth even "more" in value.
Personally, I wouldn't stick with this doctor if he/she told me that. I know better after having seen a number of LLMD's.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I personally now think Igenex is about 80% reliable based on ChuckG data he posted here
Your cd57 is kinda ok. What about VEGF? Vitamin D?
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Could be EBV too. Read what Timaca writes too. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Batsandcats~ First, it looks like your Vit D level is low, and that can cause unusual issues, so work with your doctor on correcting that problem.
Next, it is important to get tested for a number of pathogens, for they can all give symptoms similar to lyme. So, yes, get checked for HHV-6, EBV, and enterovirus to name a few.
Do a search using my member number and the words "viral testing" to see a more complete post.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
I've got to reply very briefly because my son is wakeful and I don't want him stumbling out here to see if Santa has come!
Thanks for all the replies so far. I would love an Igenex test, but don't think I can afford one. I was on their site today but couldn't find pricing.
No it wasn't Igenex, it was LabCorp, drawn on a Saturday and the reception area lady didn't know if all tests could even be done properly on a Saturday. (This made my Spidey-sense tingle, so to speak...who wants to drop 10 tubes of blood if it might not be tested properly?)
It took 2.5 wks to get my results from doc's office after they told me they had "finally found them" in response to my 2 phone inquiries with them. They were supposed to have mailed them to me (they are 1.5 hrs away) on Monday and they still weren't here in today's mail, so I don't have the results in front of me to check band 41 for myself. The only other unusual thing my MD said was my zinc was low in addition to my Vit D being at 18.
In my intro post seeking an LLMD, I gave my full clinical history, but what I want to point out and have pointed out to my MD is that I lived with my parents for 6 months in a house where the deer are literally omnipresent in her yard, and have visited there frequently in the last 2 years. The deer walk up to the porch and have eaten from my hand (because I thought I was safe, imagining that if any ticks got on me, I would see them -- I thought they were much larger than they apparently are -- I grew up in NYC). I have rolled around on her lawn with my son. Doesn't that increase the significance of that positive band (like, to me, it goes like this: 2+2=4)?
But I can appreciate wanting to rule out everything else first. Lyme tx is pretty hardcore!
Posts: 8 | From Pocono Mtns, Pennsylvania | Registered: Dec 2009
| IP: Logged |
Is your health worth $200??? Get the western blot #188 and #189 .. both together runs about $200.
---
My small income is so carefully budgeted at this time that if I took $200 to get the Igenex test, my family couldn't eat for 2 weeks.
Life like that is beyond some people's comprehension (and lucky them!), but that is my reality.
So yes, my health is definitely worth $200 to me. But my health isn't worth starving my child, so the Igenex test will just have to wait a while yet.
It's genuinely unfortunate that one should have to possess a certain amt of disposable income to be "allowed" to be well.
Posts: 8 | From Pocono Mtns, Pennsylvania | Registered: Dec 2009
| IP: Logged |
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I'm so sorry about your situation. We had to save up the money to get my daughter tested. It actually cost $260 to do that test.
I am now saving up to get myself tested. It is hard to try and come up with the money to treat this disease.
Could you maybe save a few dollars a week?? If you don't treat this, you will only get worse, unfortunately.
I had someone tell me that it would be better to eat beans everyday than to let the lyme stay in your body. I tend to agree. Hopefully your situation will change, or maybe family can help.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Kidsgotlyme, I'm so sorry to hear this. You too BatsNCats. It's not a fair situation at all. I assume you don't have health insurance or just HMO coverage so no insurance reimbursement applies.
I'm even sorrier to hear the test is being marked up $60 Kidsgotlyme when you're in that situation. Not fair. Igenex's cost is $200 and that INCLUDES pre-paid return postage. That gets to me. Maybe add $10 for the blood draw, but that should be it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You really need to buckle down and ask someone to lend the money if you're so doubtful about the current WB results. Find some route, because it's crucial. A best friend would lend it if not give it I'd hope.
Personally, I wouldn't need the Igenex test after receiving a positive IgM 23. It's too specific to ignore. I "might" get another Western Blot from either the same lab or another -- if insurance covered it. I'd only do it to confirm the IgM 23 came back positive a second time to ensure it wasn't a false positive, not because I doubted the significance of the band.
Beyond that, it's unnecessary. The facts are that 23 is exceedingly specific to borrelia burgdorferi. If you see it, I'd easily put down 1 million dollars of hard earned cash betting on Lyme Disease as the cause of systemic symptoms of the sort you have.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Igexex hits me with 23-25+++ on my IgM everytime MB. No other lab can find this at all. THey also found + on 31, 34 on the IgM, as well as 58. I hope your $1,000,000 bet is wrong for my sake. If just ONE other lab could show a 23-25 band, I'd feel SO SO SO much better. Ironic, huh? Three times LabCorp didn't find it and only 1 of 3 could they even find a 41 on the IgG. Never once one band on the IgM side from non-Igenex labs.
All kinds of stuff shows up on the IgG side from Igenex...nothing from other labs!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I would not spend the money on Igenex if you can't afford it.
Have you taken antibiotics yet to trigger the immune response? Taking an antibiotic that treats Lyme could prompt the next test to be positive.
If I were you, I'd provoke it with herbs or antibiotics, and try another lab your insurance covers, like Quest or Labcorp again, or Stony Brook in NY. I think my insurance covers Stony Brook, and I actually had tons of bands show up on their lab.
Stony Brook is definitely the best out of the labs insurance might cover.
And if nothing comes back in those, I would just try to treat somehow, through an understanding doctor, if you can't afford an LLMD. If you educate yourself well on sites like this, it's possible.
Some people have even gotten themselves better ordering drugs online (you don't need a prescrption), but that should be done with extreme caution, and hopefully a physician to run liver tests periodically.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Or, you might want to find someone who will just treat you on an experimental basis to "see if it helps."
Igenex is a good lab, but if you can't afford it, might as well just treat anyways, and work within your budget. Having a positive from Igenex isn't everything. If you are really sick, you should probably treat regardless of what the Igenex would say anyways.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
seekhelp,
I had lots of IND and positive bands on Igenex, but nothing on 23 on either IgM or IgG.
Then, Stony Brook showed positive 23 IgM.
So I wouldn't be too concerned about it.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
Hi - my CD57 count is in the 140s - I asked the originator of this test about that - he said the CD57 count can be up there and people still have Lyme, just as people with AIDS can have a high CD4 count and still have AIDS.
So disregard what the doc told you about the CD57 count.
My understanding as a layperson is that it isn't a normal count until over 200.
You have Lyme symptoms and you need to see an LLMD.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I just checked my mail. I ordered another test kit from Igenex. The basic lyme panel western blot is $260, so it must have went up since you last tested, seekhelp. I hate that!! Anyway, I was looking over all of the cost, and the one that tests for the 188,189 is only $70. I thought this might help, batsandcats. That's a lot better than $200.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Are you sure it went up from $200 to $260 Kidsgotlyme? If it includes the IFA test, perhaps? Tests 188 and 189 were $100 each in mid-09 so I don't see them bumping them $30 each in 5-6 months!
However, my LLMD does intentionally mark-up tests and charge patients $260 for these two labs instead of the $200 real cost. Check for this type of stuff.
I say this because you're better off just going somewhere else and having a test ran instead of paying more for the same test. Fortunately, I didn't need to get it done there. Just bring your results to the LLMD. This kind of thing happens left and right with docs!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You might want to just forget testing for now.
I think a LLMD would just go ahead and treat a specific band. And
ask questions later. Sometimes after a challenge it
shows up a lot better. Money wise that is where I
would put mine.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Like Pinelady, I would put my money toward treatment. LD is actually a clinical diagnosis anyway.
I started treatment with no bands positive through Labcorp and later got bands 41 and 23 while treating. I never tested through Igenex, and my insurance has paid for all 3 of my Western Blots through Labcorp.
I know everyone thinks Igenex is the only way to go; but I have been getting treatment for LD without an Igenex test, and have never paid out of pocket for any lyme test.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
quote:Originally posted by Hoosiers51: Have you taken antibiotics yet to trigger the immune response? Taking an antibiotic that treats Lyme could prompt the next test to be positive.
If I were you, I'd provoke it with herbs or antibiotics, and try another lab your insurance covers, like Quest or Labcorp again, or Stony Brook in NY. I think my insurance covers Stony Brook, and I actually had tons of bands show up on their lab.
Sorry for my long absence from this thread. I've been extraordinarily discouraged about all this, and I felt pretty hopeless regarding the whole Igenex and finances issue.
However, I don't know about this Abx challenge. Could you tell me more? And does it need to be Abx, are there herbs or something that will also work?
Thanks so much to everyone for all the keen insight. It greatly helps.
I sent my doc an email tonight saying basically, "When I see you on Saturday, what's the plan? What will you do if the new round of tests are negative? Will you treat me fo lyme based on my clinical manifestations and that + IgM P23? What's your take on IV antibiotics for neuroborrelliosis? You are welcome to phone if you feel that is more appropriate for this discussion."
Seriously, I don't want to waste my time any longer. I just keep getting worse! Why should I stick with this doc if he won't / doesn't treat effectively and quickly? It took me 4 months to get my initial consult, another few weeks for blood results, and then another month of waiting until I can go for my physical exam...that's a lot of time in which I am losing valuable cognitive function! How is this acceptable? Am I just supposed to wait til I'm having seizures before this place gets serious about helping me?!?
So, that's where I stand now. And I stand here pretty miserably and indignantly!
Again, everyone, thanks for the help. It's so very genuinely appreciated.
The doc answers emails w/in 24 hrs, so I should have some info by tomorrow night.
Posts: 8 | From Pocono Mtns, Pennsylvania | Registered: Dec 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hmm...I'm not sure exactly on the "how" of provoking the Lyme before re-testing, but I think it might be good for you to start a new topic in Medical Questions asking that.
I would say to do a search, but I'm not sure what key words to use.
I think people sometimes use Doxycycline, and I wanna say they take it for 2 weeks, then take 3 weeks off, then test again.
You may want to ask something like, "What herbs or antibiotics can provoke a positive Western Blot?" if you start a new topic.
I'll search the archives and see if I can find anything. There IS a way to do it, but I'm just not sure what it is.
Either way, if your doctor does agree to treat you, you could always just test again after that. I have had positives on the Western Blot while on antibiotics, for what it's worth.
Stinks about your doctor being so difficult. Might just need to find a new one.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
To treat Lyme appropriately you have to have a LLMD. Most docs will never give you the treatment needed to irradicate Lyme Disease.
Band 23 is VERY lyme specific! No doubt you need a LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
The doc hasn't responded to my email. This doesn't strike me as a good sign.
I am going to make a few calls to the local-ish LLMDs. I've got to get treatment...my whole body aches today and my encephalopathy is getting so much worse.
Thank you again for all the support! It means so much.
Posts: 8 | From Pocono Mtns, Pennsylvania | Registered: Dec 2009
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I only had IgM band 23 from Quest show up in my testing.
That and my 54/75 Lyme symptoms were enough to get me diagnosed by a duck.
I started antibiotics one week later. Not enough.
When I saw my LLMD about 45 days later he said there was no doubt I had Lyme.
He added diagnosis' of babesia and bartonella.
He said no need to test via Igenex at that time.
Yes I herxed on doxy.
That also helped confirm my diagnosis.
I have no idea what my CD 57 is, but it can be above 100 and you be sick.
Mostly caused by co-infections which unfortunately have
Symptoms that overlap those of Lyme and each other.
Your CD 57 score is not a reliable indicator of Lyme....or not.
Not a reliable indicator of how sick you really feel.
Keep us posted.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic