I should have posted this on the thread it started with but I've never heard this quite this way before, and now I'm scared. I had an IgM positive but then I had another post about false positives and I'm worried. Is my LLMD going to check for these things, I looked at my labs and I don't see where he did.
Don't you think instead of ordering another wb from IgeneX, he should have brought up these things to me?
This is a part of a reply that I gotfrom this board.. ..
"The problem with a "clinical diagnosis" is that several pathogens cause the SAME "clinical picture" . For instance, you CANNOT tell the difference between lyme, HHV-6, EBV and Cpn by symptoms alone (unless you have a bulls eye rash--that is lyme)."
What the heck is CPN and I searched for it but still couldn't find the symptoms, causes, and is this fatal?
Herpes Virus can show up as Lyme on a Western Blot?
Is EPV (I think I know what it is), isn't that Mono? I've never had mono, but my brother did, I was never sick from it though.
Am I going to go through this treatment without Lyme?
I'm a bit of a hypochondriac, so of course, now I have a huge knot in my stomach.
Can someone please explain this to me????
If band 31 doesn't show up (or whatever the heck that band is that normal labs don't test for), does that mean I for sure don't have Lyme?
I really need more info on CPN, I saw stuff about pancreatic cancer when I researched it....now I'm freakin'.
But Tinaca, thanks for the info, I do need to know about these things, I just wanted so more information about it. I'm skeerd.
I have the HPV Virus, does that mean I have the HHV-6 virus?
Edited to say: Is CPN Celiac Plexus Neurolysis? or Chlamydia pneumoniae? (or whatever it is, I copied and pasted it!)
And can you get rid of these things???? And can you die from it?
Also, If it is Chlamydia pneumoniae, if I've already been tested for Chlamydia (I don't know why I was, I think it was through the rheumy doc) it was negative, or are they 2 diff types of things?
Sorry for all of the questions. Posted by sixgoofykids (Member # 11141) on :
What were the results of your Western Blot?
Yes, you can have Lyme and not have band 31. In fact, some with Lyme have a negative WB because their immune system is doing so poorly.
You see a good LLMD. I'm sure he looked at your test results and symptoms before making a diagnosis. This kind of worry is most likely from the Lyme.
Remember, this is a message board, there are as many opinions as there are people here. Use it for support and ideas, but trust your doctor.
Posted by Nessa1815 (Member # 15697) on :
Well Labcorp from what I understand, does not test for band 31, am I right? I tested CDC positive for band 41 and 23 on the IgM side. No IgG response. I'm getting another wb from Igenex, the blood was drawn on Tuesday.
Posted by Alv (Member # 15192) on :
well if you had 41 you have lyme.That is confirmed by the BEST Dr Ever.
My dr said for my daughter she does not ahve lyme.She did not had band 41 and had a couple of others.
Confirmed by QXCI test -that she has no lyme.Went to my llmd that is a DR and uses Muscle TESTING and confirmed she does not have lyme but BART!
band 41 is enough to think you have LYME!!!
Posted by 0624sm (Member # 15591) on :
Nessa, Cpn is Chlamydia pneumoniae, and you can find out all about it at Cpnhelp.org. Cpn is a very small intracellular bacterium, but it's no small thing to be infected with. It has a cryptic life-cycle phase that it slips into when it's threatened. That makes it tough to get rid of. By the way, like Borrelia, the testing is very unreliable. It's more reliable after you've been on abx for a little while.
If it turns out that you have Cpn and/or some of the other infections you were tested for, you're in good company with lots of other people.
Posted by lymemommy (Member # 12495) on :
Nessa,
I looked into EBV last year because that is the first thing that I had abnormal bloodwork on.
What I gathered from my research, is that EBV (as well as the other herpes virus' that we come in contact with throughout our life time) remain within in our bodies, but are controlled by our immune systems.
When our immune systems are compromised by some other form of infection (like lyme and co) or by some other serious medical condition, then the immune system is no longer able to keep the dormant virus' in check.
The virus' are reactivated (they start reproducing) and start to wreak havoc on your system.
EBV is the most commonly encountered virus for humans, the vast majority will have antibodies to it by the age of 40.
Not everyone gets mono though, that's what happens when you contract EBV during or after your teenage years. Children who contract EBV don't get the full-blown mono experience.
If you do a search on EBV and the other virus', you will find many others here have high titers that suggest reactivation.
I don't think that it is something to freak out about, rather that it is just it is another facet to this complicated illness that many of us are coping with.
I hope that helps you understand it better. kp
Posted by timaca (Member # 6911) on :
Nessa~
It is important to get tested to figure out what you are ill with. Yes, you should get tested for EBV, HHV-6, Parvo virus, Enterovirus (which test wise is called coxsackie A, coxsackie B and echovirus), chlamydia pnuemonia (Cpn) and mycoplasma pneumonia. Then compare your results. Treat what is outstanding.
I was never sick with mono either, but the EBV did reactivate in me.
Having HPV does not mean you have HHV-6. These are separate viruses.
There are several different types of chlamydia. Many chlamydia are sexually transmitted. Chlamydia pneumonia is not. It is a community acquired disease, meaning you can pick it up from someone else who is sick. It can reactivate and present with symptoms similar to lyme.
Band 41 is not enough for a lyme diagnosis. It is a common flagella protein found in many bacteria.
Just get tested, so you know what you are dealing with.
I had been in lyme treatment for some time (and I do think that was a correct diagnosis). However, I wasn't getting well. I met a man who had been quite ill with viruses, and he suggested getting tested. I did. Low and behold I had very high titers. I under went treatment and saw good improvement.
However, I wasn't well. We ran more tests and found the Cpn. I'm on doxycycline now for that.
If you don't get tested, you won't know what you are dealing with.
Lab tests will give you info to know what to treat and what not to treat.
I asked the doctor that I saw today a couple of questions. Again he did state that once you are chronically ill you cannot tell the difference between a viral and a bacterial pathogen. For instance in me, I'm dealing with HHV-6, EBV and Cpn. By my symptoms, you can't tell what is what (and the symptoms are the same as lyme symptoms). Which is why a "clinical diagnosis" for lyme is not a good way to go, unless you've also been tested for viruses, Cpn and mycoplasma and those tests are negative (among lots of other tests).
To say one has lyme based on symptoms alone is NOT a good idea. (Unless it is a bulls eye rash).
Secondly, it is not a good idea to say a person has lyme if they have one or two bands on an IgG western blot lyme test....even if the bands are lyme specific. Borrelia burgdorferi bands can cross react with other borrelia bacteria. The more bands you have on an IgG western blot, the more likely you've been exposed to the Bb bacteria, the lyme bacteria. The fewer bands, the less chance. Again, since the western blot test is an antibody test, it shows only exposure, not definitively active infection. I've known people with CDC positive IgG and IgM western blots who were healthy as a horse.
I assume you want an accurate diagnosis. I know I did. The only way to get that is to do lots of tests. Take into account the test results, your history and symptoms. Then decide what to treat.
In your case I would be skeptical of a lyme diagnosis based on no IgG bands...since you've been sick for some time. It is good that you are getting retested for lyme. Get tested for the other things too. Then decide.
Best, Timaca
Posted by Keebler (Member # 12673) on :
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Timaca mentioned Cpn. There are two articles below.
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This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others - that should also be assessed in all chronic patients, especially those with neurological symptoms.
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