Opinions, do I have Lyme??

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BP
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Date Joined Jul 2010
Total Posts : 34
   Posted 7/4/2010 1:21 PM (GMT -6)   
Hi folks,

You seem to know so much so thought I'd see what you all thought. Old doc didn't think it was anything but I doubt he had a clue. New doc seems to think there is something here.

We are retesting Lyme and CD57 with Quest. New doc seems fine with testing CD57 at Quest. I have read otherwise but am doing as she asks. She's not a LLMD but is VERY smart about this stuff.

Tests from last year (Sept).

IGeneX - IGG Western Blot - Band 41 - IND (new doc says this doesn't mean much)
IGM Western Blot - Band 41 - + (new doc says this means something)

Labcorp - HNK1 (CD57) Panel - Abs. CD8-CD57 - 38L (new doc says this mean a lot)

Of course, I don't remember a bite.

Thanks much.

Razzle
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Date Joined Aug 2007
Total Posts : 4396
   Posted 7/5/2010 8:11 AM (GMT -6)   
Maybe. Band 41 is not Lyme-specific, but may be the first band to show positive after initially becoming infected with Lyme. However, CD-57 seems to be highly regarded by some LLMD's as very specific to Lyme when it is low (others do not use it, not sure why). It will be interesting to see the results of the new round of tests. Sometimes, a trial of antibiotics, followed by a re-test after stopping abx can result in more accurate tests due to the action of the antibiotics on the Lyme - kind-of wakes up the immune system to kick-start it into making antibodies against the Lyme, which is what the tests look for...
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle, Magnesium, homeopathy.


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2010 10:58 AM (GMT -6)   
Razzle, altho Band 41 is not specific to Lyme, isn't it specific to infection w/ spirochete? It is specific to only certain types of bacteria, I think? I will go back and check...
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


BP
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Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 11:00 AM (GMT -6)   
I forgot to mention. I had the Igenex co-infection panel and there was nothing.

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2010 11:02 AM (GMT -6)   
Yes, BP, as for band 41:  flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
 
We cannot diagnose Lyme, but it seems you have enough to indicate you need to look in this directions

 



Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 11:04 AM (GMT -6)   
Thanks much for your opinions.

One more question, if I may. If this is the first to appear how could that be 14 years after the fact. Would that be something at the beginning of any infection?

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2010 11:18 AM (GMT -6)   
I don't know that any of us could know the answer to that. Yours (41) did show some reaction (which most Drs consider to be a positive) on your IgG, which is older than a few months. Maybe you do have a new infection as well? Maybe it is possible that you had Lyme long ago, or you were in remission, and it some how has become reactivated because of all the other things running down your immune system? I don't think any of us know, but feel that you really need to find more medical help on this.

The WB does indicate things, but I don't think there is anyone that understands every single aspect of this test and how every single different person will react. We do know that certain bands positively indicate Lyme -- and 41 would be one, unless it's indicating some other spirochete.

If you've read much about this, then you know that there are zillions of reasons that other bands may not show positive. And esp w/ the oldest infections, there are no antibodies left to show up.

Have you had any abx? Some say that once on abx for a little while, more bands may show on the WB because the antibodies may start kicking in again.

There are lots of other tests you could try also, if you're Dr is knowledgeable and/or you have the money.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 11:29 AM (GMT -6)   
No, I have not tried antibiotics.

What other tests could I get? Doc will probably order anything I ask for.

Thanks so much for all your help. I do think she will send me on to a LLMD. It's a doc that she always sends her people to and apparently he does nothing other than Lyme.

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2010 11:38 AM (GMT -6)   
Well then, BP, I think this is your best answer. If there's a doc your doc knows that can help you, that's awesome! I'd write down every single symptom and every single question. And he/she will know what tests to order and will know how to read/interpret them.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 11:41 AM (GMT -6)   
Thank you so much everyone, for all the replies.

I like to check these things with people who really know (the people who have this illness). I have no respect left for doctors after having to diagnose myself with Hashi's, Celiac, Adrenal Insufficiency etc. They just left me to die but I'm sure you all have such a story to tell.

BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 12:36 PM (GMT -6)   
I have some more testing (just in) from Quest. Any thoughts would be appreciated.

IGG - 41 - reactive
66 - reactive

(They only tested the following bands 18,23,28,30,39,41,58,66,93)

IGM - 41 - nonreactive

(They only tested the following bands - 23,39,41)

CD57 - 3% - I doubt they did this right. The description of the test doesn't even sound right. They call it Cell Surface Marker, Individual Cell Surface Marker % Of Gated Cell Population - 3%

The Labcorp CD57 made more sense. This sure doesn't.

Any thoughts?

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2010 1:52 PM (GMT -6)   
BP, my WB came from Quest as well. I think we all know that Quest's test is not sensitive enough, but the most important thing I found in it was that they read/interpret many bands that are NOT significant, and then neglect many bands that ARE significant.

The notes I made on my Quest WB say they neglected bands 14,21,22,25,27 (european), 31( I ** this, so it's probably an important band), 34,35,37,47,50,54,60,77,83,93, and 94 -- on the IgG. In my searching, I found all of those bands to be significant. On the IgM, Quests excludes band 7, which is species specific.

So, in testing bands that have no significance, and neglecting so many bands that ARE significant, HOW can anyone expect this test to be accurate?

My notes also say that IgM converts to IgG in appx 2 months, and shows only about 25% of the time. That lends a little more weight on your reactive IgG 41.

This list does say , '66 cross-reactive for all Borrelia, common in all bacteria', so I don't really know the significance of this.

I was lucky enough to get a positive reaction on band 39 IgG, so 2 LLMDs diagnosed lyme on that basis. My new LLMD said that the opinion of most LLMDs right now is that because this band is so highly specific to lyme, it, alone, indicates lyme. There is no other reason it would show reactive.

Altho, it could possibly have indicated a past infection, considering my babesia numbers are high enough to indicate 'acute' (even tho I'm not nearly dead right now), the fact that I am still symptomatic, and my low CD57, (along w/ WBC and other lab stuff) to him it indicates an active infection.

ON the CD57, I know there are 2 numbers, and one is a %. I do not know what that means. Mine is 3%. There should be a number beneath that, that you would look for. Mine came from labcorps. My LLMD noted that Labcorp is formatted like Igenex and that other labs do not format it the same way. So I don't know where you would find the number you are looking for.

On my test, the Dr also circled WBC, Platelets, Neutrphils, and MCH -- I don't know the significance of all of them, except that they indicate some kind of infection.
 
Note:  your Hashi's, Celiac, Adrenal Insufficiency etc could be caused by Lyme, or Lyme could possibly be another one of the results from something else. 
 
I cannot prove anything, but can honestly state that I never had high blood pressure or high cholesterol (which were tested at least 4 X per year while I was giving blood at work) until that tick bite. Nor did I ever have low thyroid or adrenal problems.  Those are measurable items, in addition, of course to other symptoms.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/5/2010 1:58:00 PM (GMT-6)


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 2:01 PM (GMT -6)   
Thanks much.

My head is spinning. I guess a LLMD is in order. I'm just not convinced.

On the CD57 there is no other number on the Quest results. On the LabCorp there are 2 numbers. The percentage which was 2% and then the Abs. CD57+ which was the 38.

I doubt that Quest either did the right test or that indeed you can't use Quest. It's always something, isn't it.

Thank you so much, again.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2010 2:15 PM (GMT -6)   
Oh, BP, my LLMD says that Quest can and does do a CD57. He just said that they format it differently. I had to pay for my labcorp CD57 because my ins only pays for Quest, and he said that when he's ready to order another one, he will order thru Quest. Maybe they did not fill out your form correctly?

And in agreement! Nope -- you don't have to be convinced at all, and I'm not exactly trying to convince you except to say that you are correct, a visit to an LLMD is in order. If you are able to get into see one soon, you will be a lot luckier than most of us!

Please keep us posted!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 2:20 PM (GMT -6)   
Thanks +Lyme.

I'll have to give them a call. Maybe something is missing. From what I've read Labcorp is the only lab to go through but appears from what you told me about your doc and what my doc said, that Quest works just as well.

On the convincing, I wasn't suggesting that you're trying to convince me. Not at all. I was just thinking that it just doesn't ring true to me and I've been sick such a long time, you would think I would have more Lyme specific problems. BTW, my EBV tests don't look to good so that's probably more the case than Lyme. Who the heck knows anymore but I do thank you so much for all the replies.
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