posted
Hi. Been a long time since I was here. Hope you remember us. You sent me here to learn about LD, etc. when I told you our story over at Pro Health. You may recall my husband had the GA on his forearm so it got me to wondering about LD. I have had CFS/FM symptoms for over 7 years now.
My husband and I finally got in to see a LLMD last month. He suspected LD so did the WB. I just now had them fax over the results. Will talk to the LLMD next week.
This is what our reports say:
My husband's results: Igenex IGM result: Negative CDC/NYS result: Negative Blots with any marking other than minus are as follows: 31 IND 41 +
Igenex IGG result: Negative CDC/NYS result: Negative Blots with any marking other than minus are as follows: 31 IND 41 +++
My results: Igenex IGM result: Negative CDC/NYS result: Negative Blots with any marking other than minus are as follows: 39 IND 41 ++
Igenex IGG result: Negative CDC/NYS result: Negative Blots with any marking other than minus are as follows: 31 IND 34 IND 41 + 66 +
If I had not read the WB test result thread here I would think our results are not significant at all. But along with our clinical symptoms it looks like we may be on to something.
One thing I wonder about now. I am on the Wheldon protocol for Cpn as I had a high enough IGG & IGA to suspect it as well. Classic symptoms of it as well. The thing I'm getting at is that I take lots of antibiotics. I did not stop taking them to do the WB. Was that a mistake?
What is your impression of our test results? What questions should we ask the LLMD when we talk next week?
Thanks again for your help.
If anyone else wants to comment too I appreciate learning all I can.
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
Hi! Of course I remember you! Thanks for coming back and posting this.
I am glad you read the western blot info.
First, remember that lyme should never be ruled out because a test is "CDC negative" or "Igenex negative".
Lyme is a clinical diagnosis, based on history and symptoms.
A person should be off of antibiotics for at least 2 weeks before testing.
You know from reading the western blot info that bands 31, 34, and 39 are lyme specific. It is possible for band 31 to cross react with viruses.
Dr C also believes that band 66 is significant.
My LLMD says that IND band results are like a fingerprint.....they are a light fingerprint, but still the same fingerprint, and therefore significant.
You are really looking for clues to help with diagnosis.
History and symptoms are most important.
I think you both have clues in your western blots that point to lyme, along with your history and symptoms.
Tell your LLMD that you were on antibiotics when tested.
Ask him if he is planning coinfection testing now for bartonella, babesia, ehrlichia, etc.(remember that this testing is not foolproof either).
Ask him if he agrees that the clues from the WB's, along with your history and symptoms, suggests a lyme diagnosis.
Ask him what is the next course of action for both of you.
Others will be along to give more suggestions, I'm sure.
Thank you for following up with your story and results, and posting this.
I hope you are at the beginning of the road to recovery.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
If you doing Wheldon protocol you pretty much doing BB treatment .Except maybe the anti spriochette part -flagyl, macrolides and rifampin all good for lyme. I am not that sure about tetracyclines effectiveness against spirochette.
So why does it matter? Now the lyme coinfections such as bartonella and babesia might require additional options (antimalarials for babesia, scary drugs for bart) And if you have them that would more or less support the idea that you have lyme as well
BTW did you get better on CPN treatment?
Posts: 856 | From MA | Registered: Jul 2009
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posted
Thank you DeKrator48 for the quick response.
The LLMD did not feel at this time from our clinical symptoms that we were in need of testing for the other tick diseases. He had us fill out a very long questionnaire asking details about them.
So do you know how being on antibiotics affects the WB test? Like would it make the result have more positive bands or less?
Those are good questions to ask. Thanks.
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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The reason I am pursuing more knowledge about the condition my condition is in ... is that Cpn is more easily killed than LD as you said. I want to rule out that I have a tick disease so I know I am on the right treatment.
The Wheldon protocol has helped me significantly but it took me 9 months before I could start the 5 day pulses. First step for me was I just wanted to get well enough to go to a LLMD. Now I want to rule out LD. I will need to add to my antibiotic regime if I do have it to get rid of it.
Hope I'm making sense. I am having major brain fog today. Does that answer your question?
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
It is my undertanding that being on antibiotics could make your results have less positive bands.
Taking antibiotics for awhile, then stopping them and waiting at least 2 weeks before doing the WB, could produce a better antibody response showing more positive bands.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I wonder why the LLMD did not tell me to stop in that case. I will of course ask this question when we next speak.
The statement made on the WB thread that does cause me to think we have borrelosis reads:
"In my clinical experience, if a pateint has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis. These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, & 93."
We are both positive for 41. So I am saying that alone would reflect we do have borreliosis. Right? Then we both have the IND for 31 as well. Plus my other INDs and the plus on 66. So if all that showed up while I am on a antibiotic regime that is more significant to me in view of what you shared about less positive bands show while on antibiotics.
Basically is that your thinking as well? Or was it something else too?
To tell you the truth... I did not think anything at all would show up our first WB test. I am relieved and dismayed at the same time.
Thanks again for your responses. You are very helpful DeKrator48 and Lymetoo.
I guess now all I can do is wait for our next appointment next week and see what the LLMD will tell us. I'll get back to you then and let you know our next step/steps.
I will check this thread periodically to see if anyone else wants to tell us anything too. So many here have vast knowledge on dealing with this. Wonderful how you help weary souls figure things out. Thanks again.
Blessings upon you!
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
I think it's a matter of looking at the whole picture.
Dr B also has an opinion on interpreting WB's on page 7 of his important guidelines.....
I am thinking that your bands 31, 34, 39 and 66 are very suspicious...and along with band 41 make it very possible that you both could have lyme.
A good LLMD will look at those results, along with careful consideration to your history and symptoms.
If it makes sense to him, then I think he would treat you to see if you have improvements....which can take a long time.
In the meantime, keep reading and posting..and others may be along to reply too.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thank you again DeKrator48. I am anxious now to hear what our LLMD says about our test results. Maybe our LLMD will have me retake the WB after staying off antibiotics for at least two weeks this time. That would be interesting. Not that I want to spend another couple hundred dollars out of pocket. But if that is what it takes to get the knowledge for the correct treatment it would be a small sacrifice.
I read the page 7 you suggested in your reply. I have that document downloaded and have read it a couple of times last summer when we first spoke. It makes more sense now that I have my own tests before me. I have read many other articles too and they seem to focus on clinical symptoms as you say. The LLMD we saw said he suspected LD in both of us by our symptoms. So seems like the LLMD is on the same page as you all.
Also said if we did have Erch??? (forgot how its spelled...the one that starts with an E) after being on daily 200 Doxycycline for a couple of weeks we would have banished it already. It is the easiest one to defeat.
LLMD said by my symptoms there may be a chance I may also have Bartonella but wants to test for Lyme first before running further tests. The Bartonella questionnaire I took didn't match my symptoms as well as one I read in here. I wonder why everyone does not use the same exact one? Maybe I should print it off, fill it in and submit it to my LLMD showing a better match.
Oh, I know what it was I wanted to ask about ... we both had a test called CD57 done too. LLMD mentioned if it was 60 or lower it would be a good indicator for Lyme. I think LLMD even said no other known reason for it to be low. But neither of us had low scores. Mine was 5% 120uL. I don't know much about this test but I imagine it is just another fingerprint as you said earlier about the WB. Thinking perhaps if I had it done last year it may have been lower as I was terribly sick then. So thankful the Wheldon Protocol has helped me function much better these days.
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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I just thought I'd pop up and say that the LLMD I see (also in Washington) didn't have me go off antibiotics when I re-tested for Lyme. My test results came out with even fewer bands then yours- but my first test (before antibiotics) didn't have much in it either.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
I don't think it would hurt to print off the Bart questionnaire you found and show it to your LLMD.
Untreated coinfections can be one reason that lyme does not respond well to treatment, so of course you want to cover all bases that seem likely.
If you reread Dr B's entire paper now, it will help you know what to ask your LLMD about treatment and coinfections.
I guess I would be surprised if he did not treat you both, considering he suspected lyme before you even had the WB's.
My LLMD told me that it is his experience that only his sickest patients have really low CD 57's.
Don't know if that holds true for others. I did not have a CD 57 done, but he told me that mine would probably be around 60 because I am not disabled.
Here is an article about the CD 57 test that may help. The author says that the clinical picture is more important...and "treat the patient, not the lab test".
It is very possible that your CD 57 would have been lower before you had improvement on the Wheldon Protocol.
Please keep us updated.
I sincerely hope that you both have found your answers and will now have true hope for recovery.
I also urge you to post your diagnosis/story on the PH FMS/CFS board if you get a lyme diagnosis.
There are so many others there whose stories sound familiar and still do not get it....that they need to find the real cause of their illness...and that the bacteria borrelia burgdorferi (and other coinfections) can be that cause.
For now, I'm glad you are functioning better. Any little bit helps.
Will be waiting to hear your updates.
Take care.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I have read also that some of the sickest are the ones that do not get a good showing on WB because their immune systems just will not react. Glad you do not have to stay sick any longer.
-------------------- 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
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sutherngrl
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Member # 16270
posted
My LLMD did not have me go off antibiotics either for testing.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks everybody for your input. It all really helps to keep my mind focused in the right direction. Seems it took forever to get to this point and waiting another week for our consultation is a test of patience! (winking)
So I am wondering Nicole-Denise if you got a diagnosis of Lyme Disease and are you in treatment now for LD?
Thanks for the CD57 article DeKrator48. So even if it is 100 says that can indicate Lyme D. Due to the improvement in my condition it is not improbable that it was 100 or below prior to the treatment I'm on. I have really knocked down the infection considerably for sure I know by the way I feel and function at this time. But I still am sick everyday only just not as bad.
It is interesting that many of you did take antibiotics when tested. Seems they should have a standard for all taking the WB. Maybe I am missing something and look forward to further discussion with my LLMD.
I certainly will post my story if it becomes relevant. Thanks for the support, advice and encouragement everyone. Off to find that Bartonella questionnaire ...
PS - I will try to re-read Dr. B's long document again. Oy! (chuckling now)
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
Just for my own piece of mind I printed the list of Bartonella symptoms and Lyme Disease symptoms.
I have 16 out of 21 on the Bartonella list. I have 27 (+ 4 resolved) out of 38 on the LD list.
All on the Bartonella list could be Lyme Disease except anxiety & foot pain were not on the list. That makes it difficult to differentiate.
So the LLMD is focused on finding if I have LD first as that is most likely. Should I request a Bartonella test? TIA
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
I think it is wise to keep the possibility of coinfections in the forefront.
Many people do not just have lyme...they usually have one or more coinfections too, which if left untreated, can hinder recovery.
Discuss your concern about the 16 bart symptoms with your LLMD and see what he says.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Well, LLMD said my test results are indeterminate for LD diagnosis. So next step I am to go off antibiotics I am on presently, wait a month, take Biaxin for 3 weeks and do the WB IGM again. If I would have had one more + he would have diagnosed LD. He also said my CD57 is below 150 so is suspect of LD. Hubby is also going to be on Biaxin 3 weeks and get test again but he doesn't need to wait a month as he wasn't on antibiotics. So that is an update for ya. Any thoughts?
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
Thanks for the update!!
It's just my opinion....that he is relying a little too much on test results.
LD is a clinical diagnosis.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Yes I agree LD should be a clinical diagnosis and I do believe he is of like mind but also does want to get more verification at this point. Having said that after reading the Dr. B guidelines and the Dr. C write up here I am under the impression presently my LLMD is a bit more skeptical.
Unfortunately due to circumstances out of my control I was in a bad mental state (bad brain fog) when we discussed my case so I was not able to form more helpful questions to ask him at the time. Trouble focusing, etc.
My LLMD did say that having a CD57 test result under 150 would seemingly indicate Lyme in his opinion. If you recall mine was 120.
Today I am calling pharmacies to get the best price on Biaxin. Now the question is thrown at me do I want to use "Brand" or "generic"? The price difference is hundreds of dollars. $327.72 versus $32.45. Is there any reason I should insist on Brand and spend the extra money?
TIA ~ Dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
CelticLadee,
Like you, I must pay full price for my meds.
If a generic is available, I use it.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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