posted
Okay..so I finally rec'd my Igenex results today. And, while I know I shouldn't wait for "proof" of Lyme, I do need some help knowing what this means in light of the whole picture of my health. So here it is: remember, I'm also positive for EBV and HHV-6. Paperwork says those may create a false positive. So, does that mean these results don't really mean anything?
IGG Result "Negative" All negative, but for 41 kDa IND
Please give me your thoughts. Have a call into Dr. C....he already put me on Doxycycline 200 mg 2x's day....broke out in rash all over. They said to go off of it. Not sure about this either. Could be a Herx, could be allergy to meds, could be yeast rash (already have enteric candidiasis before taking antibiotics).
I've been off Doxy 4 days now and rash is spreading, itching getting worse, unable to sleep and MISERABLE!! What does THIS mean? What does it mean for future treatment of lyme?
SO many questions....I know I won't have all the answers. I just want to know if this is still a "maybe", keep searching?
Have appt. with ND and MD on Friday for rash situation. ND is not LL, but has encouraged me looking into it with Dr. C. MD isn't on board at all.
Please....help....give me all your best advice and speculations. thanks
[ 09-22-2010, 07:17 PM: Message edited by: tiredmama ]
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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posted
Thanks, Lymetutu. His office called me back today and confirmed that the dx is positive for lyme and a couple coinfections.
Dr. C's office told me to go off the doxy b/c of the rash. I'm kind of thinking it's prob. yeast. I've screwed up as of late on the clean diet thing and hadn't started the yeast meds or probiotic yet. I didn't want to confuse the symptoms by starting a bunch of diff. things and was anxious to treat the lyme. Now, I may be spending more time treating this rash before I can even start treating the lyme.
Dr. C's office said to go with whatever tx my M.D. has for this rash thing before I worry about lyme protocol.
Sure hope I don't get some B.S. answer from M.D. about this rash being from detergent or something! I've never had anything so miserable!!
Anyway....feeling hopeful and like I'm on the right track. Feel like I should celebrate the research I did on this to figure this out for myself after 3 years!!
[ 09-22-2010, 07:19 PM: Message edited by: tiredmama ]
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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timaca
Frequent Contributor (1K+ posts)
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posted
tiredmama~ I would consider that you may have multiple pathogens that you are fighting, including EBV and HHV-6. Remember that viruses will not be hit with antibiotics, and won't necessarily go into remission if you kill off any bacterial pathogen you may be facing.
Get copies of all your lab tests, and keep track of them. Read about HHV-6 and EBV on the hhv-6foundation's website: www.hhv-6foundation.org (also read the patient forums).
Also consider getting tested for Coxsackie B....see: wwwenterovirusfoundation.org for more info.
Good luck, Timaca
[ 09-22-2010, 05:16 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Yes, timaca. I've read all of your posts on that subject and visited the websites and I would have to agree with you. My trouble is getting any info on how to treat EBV and HHV-6.
The website seems pretty unclear as well and both regular MD, ND and LD don't seem to think it's a big deal and haven't given me anything to treat it.
LD doesn't really do antivirals, I don't think, but not sure...only visited with him once. He wanted to get the full picture first.
But, neither thought the EBV test was very specific as to past or present and HHV-6 was in everybody and the test didn't specify which type it was.
Any suggestions appreciated.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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posted
Sometimes it will resolve with the successful treatment of Lyme disease. I won't say "always!"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sutherngrl
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posted
Just my opinion.......I think the lyme test is way more proof of illness than the EBV and HHV-6. I would treat what is most obvious......lyme.
Lymetoo's advice is good, to work on the yeast for a few weeks before starting treatment.
I think the rash is likely a reaction to the Doxy. Sounds like a typical allergic reaction to me.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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timaca
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posted
tiredmama~ A website will be up and running soon with info on infection associated CFS (for lack of better terminology). When it is up and running, I will post a link. It should be up by Christmas, with any luck, way before that. It's in the final stages now.
In the meantime, suggest your LLMD to attend Dr. Montoya's talk at the ILADS conference entitled: "Viral Induced CFS: The Stanford Perspective" There your LLMD can learn more about the viral aspect of our illness.
I would again encourage you to get and keep copies of all your lab reports. Know which labs were run, and at which labs. Focus Diagnostics is a great lab for most infectious pathogens, ARUP does a good job at testing for enteroviruses. There is a thread going now here at Lymenet started by me on: Tests to consider. It gives the code numbers of various tests to run. That can help you get started.
You have only 2 bands on a WB for Lyme disease. I don't think that definitively shows you have lyme at all. You need to look at your other infectious pathogens first and treat what is most obviously wrong. If your antibody titers are very high for EBV or HHV-6 or enterovirus (which I doubt you've been tested for) then that might be a more likely cause for your illness. I'm not saying you don't have lyme. I am saying don't jump at a lyme diagnosis. Consider everything you might be ill with, then treat the most obviously wrong. Otherwise you might be starting a treatment that will cost money and not help you.
Good luck to you, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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momintexas
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posted
I agree with what Timaca is saying. For some people the underlying infections can be playing a HUGE role in feeling bad.
Ask your LLMD for all of the tests to be run to cover all bases. I was shocked to find out how many old viruses were running rampant and causing so many of my symptoms.
I have a highly positive CDC Western Blot from LabCorp and Igenex and have recently discovered that mycoplasma pneumonia is playing a HUGE role with myself AND my son.
We have been strictly treating Lyme for the last year and hadn't made much progress. Now that we are finally addressing the other issues, we are both starting to feel better.
Please make sure you explore all possibilities. Just my 1 cents worth.
I hope you get answers and start feeling better soon.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Thanks, Timaca. I will look into that website when it's up and running. I do believe though, that with the specificity of the Igenex tests and the probability of coinfections, that it point more directly to lyme than you suggest. There are 3 positive bands, I know...not much more than 2, but 18, 31 and 41 are + with 39 and 83-93 being IND. I don't see how that would point to anything else, if they're specifically testing for lyme antibodies and those show up.
Are you lyme positive? I agree with you, that other infections MUST be considered and probably done away with before lyme can be targeted. But, my thoughts have always been: in an otherwise healthy, happy and active person, what are the chances I would SUDDENLY come up with all of these infections that aren't linked to each other by one cause? Why would all the other infections suddenly show up if not for lyme robbing my immune system to anything?
I don't understand really what the wait is on all the tests and info you suggest. Sounds like those are just as hard to get definitive answers on as lyme.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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timaca
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posted
Hi Tiredmamma (love that name--I'm a mom of 4 :-)
I've had over 20 western blots run on me at over 5 different labs (including Igenex). I've had way more bands positive than you. Including a highly positive IgM WB from Igenex (lots of bands). Do I have lyme? I'm not sure. Maybe. I know I have a chronic bacterial infection of some kind due to the severe herx like reactions I get when I'm given antibiotics (which worry my ID doctors--last reaction evoked this comment from one of them "I'm glad you didn't have a seizure too." Gee---I didn't know I had to worry about that....I was worried I might have a stroke, now I get to worry about seizures too.)
So, I do believe I have a chronic bacterial infection. Possibly lyme or possibly Cpn (I have antibody titers as high as the lab measures for both IgG and IgA antibodies to that pathogen).
I also have been dealing with a Coxsackie B infection and a HHV-6 and EBV infection. I have seen significant improvement from treating those infections.
You don't know which pathogen is causing your problems. Viral infections can also affect the immune system causing other pathogens to reactivate.
This is a puzzle. I don't have all the answers. But I would encourage everyone (including myself) to run lots of tests and treat the most obviously wrong. If I were in your shoes, I would do more testing, keep copies of those results, and compare antibody titers. If you have screaming high antibody titers to any pathogen, go after that one first. If it's Lyme, go after that one; if HHV-6 go after that; if Coxsackie B go after that one.
Everyone is positive to band 41 on a WB, so you have 2 bands on a WB. That's not a lot. I'd look at other pathogens before making a treatment decision. At one time or another I've tested positive to all 10 bands that the CDC requires for a lyme diagnosis. Do I have lyme? Not sure. Maybe. But I certainly have viral infections too. And I never would have known without the miraculous intervention that I had. And my health would not have improved to the level it has without my treating the viruses and the bacterial infections.
Best wishes, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I believe band 41 is for the flagella of any spirochete, and is usually the first one to appear in a Lyme test. It was all that showed up on my first WB. My Igenex WB had IND for 83-93.
I am positive I have Lyme because I got bit by a deer tick nymph that was on me for 3 days, and developed symptoms 10 days after the bite, all of which have been consistent with Lyme and have responded to Ceftin, doxy and Biaxin.
I never recall having mono, but I now (since Lyme) test high for EBV. I cannot tell if any of my symptoms are due to that or not. Most people with Lyme, and more so with one or more coinfections, begin to test positive for multiple viruses that are usually dormant. Lyme and bartonella especially depress your immune system so it can no longer keep the viruses in check as it could before Lyme.
So probably the EBV and HHV-6 make it more likely, not less, that you have Lyme.
When you recover from Lyme and coinfections, your immune system will get strong again and be able to keep the viruses in dormancy again. Whether to treat the viruses in the meantime depends on whether they are causing symptoms and what kind of treatment is available that would help. I would not sacrifice Lyme treatment in favor of antiviral treatment though, because that would delay your ultimate recovery.
I'm not a doctor or anything medical--just a patient giving my opinion, for whatever it's worth.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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timaca
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posted
Hi LightAtTheEnd~ I never had mono either, but it appears that I was battling a chronic EBV infection.
It is possible to have EBV and HHV-6 without having Lyme. Having those pathogens does not make it more likely that Lyme is part of your problem. That is why testing is important...to figure out what you are sick with. When people have EBV and HHV-6, it is a good idea to also check for enteroviruses....I've seen those pathogens in people as a group much more often than Lyme being part of the mix.
You cannot tell the difference between a chronic viral and a chronic bacterial infection by symptoms. The symptoms, for the most part, are the same.
Recovering from Lyme and co-infections will not allow your body to put viral infections back into dormancy. I know people who have had only viral infections and they did not get well unless they were treated.
Since you mention high EBV titers, here an article that might interest you:
posted
Thanks for all the responses, though my head is spinning. I thought testing for lyme was....testing for lyme. How do I go about finding more specifics? I'm having a hard time doing all this research on my own, asking for tests I know nothing about and then having them tell me the results don't really mean anything.
My EBV was a "past infection" HHV6 was not specific as to which kind. What kind of treatment are you speaking of? No one suggested anything in regards to treatment of either.
I think I've been tested for enterovirus. I have no gastric symptoms...wouldn't I with enterovirus?
I don't think I have it in me to do much more research at this point. I've read a lot on EBV and HHV6, but it's a lot of "if you have this, then.." or "not really important if that....", etc. I've been on those websites and didn't find many answers. Who/what doctor should I go see that would help? My dr. did test for mycoplasma...not back yet. But, they treat with doxy...same for lyme and I can't take that right now, b/c of this god-knows-what RASH!!!
Anyway...still confused about the lyme test results. I don't understand why they call it testing for lyme, if the results don't mean you have lyme.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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posted
I still say that if you have Lyme specific bands ( and symptoms), you have Lyme. Testing of anything (esp Lyme) is not all it's cracked up to be.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
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posted
Tiredmama~ It is confusing to try to understand pathogens you've never heard of. Believe me, I know. I've been there. However, it is essential to learn what you can as your brain and energy allows.
There will be a website up and running by Christmas if not before that explains all of this. (At least with any luck it will be operational soon :-) So, you could wait until then. I'll post a link on this forum when it is up and running. Some Lyme info will be included on the site.
If your EBV antibody titers are high enough, then it may indicate active infection, not past. That is why it is important for you to get copies of all your lab reports, so you can begin to assess what you may be sick with. Read the above posted article on EBV. The criteria for what they consider active, chronic infection is pretty clear.
Valcyte is often used for treating HHV-6, and to some extent EBV. Other antiviral drugs may be used. I've been on valcyte, and I'm currently on acyclovor and oxymatrine. The oxymatrine is used to treat enterovirus.
Enterovirus causes all kinds of symptoms. I recently had a reactivation of the enterovirus and the symptoms were all neurological, not GI at all (although I've had some GI symptoms in the past).
Perhaps your LLMD may be willing to run the tests and treat you. Or you might find an ID doctor to help. I see two ID doctors and they are wonderful.
There will be a speaker at the ILADS conference who will be talking about these viruses, so maybe that will help the LLMDs who hear his talk to gain more understanding in this area.
And when the website is up and running that will allow more patients and doctors to have more useful info.
Hang in there...it is hard and discouraging, but you want the right answer, not any answer. The only way to get that is to run a few more tests, and treat what looks to be most obviously wrong.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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What tests? Read the article and can't decipher.
Here are my results done by Quest all hormones were low and being treated, tests for Erhlichia negative, and I THINK enterovirus was negative: Epstein Barr Virus VCA Antibody IGG: 3.41 H Index says > or = 1.10 is positive
Epstein Barr Virus EBNA Antibody IGG >5.00 H Index says > or = 1.10 is positive "Interpretation: Suggestive of a past Epstein Barr virus infection.
Herpesvirus 6 Antibodies IGG 1.20 H IGM <1.20 "Interpretation: Past infection"
Labcorp Tests: Antistreptolsin 0 Ab 226.0 High ref. 0.0-200.0 normal
Anti-DNase B Strep Antibodies <1:60 Reference Range in Adults <1:85
Thoughts? Sometimes I wonder about doing an HIV test. Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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sutherngrl
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I agree with lymetoo, that if you have lyme specific bands, then you have LD. Your body does not make antibodies to something that isn't there.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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timaca
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posted
Tiredmama~ Enterovirus needs to be tested at ARUP lab using these tests: (ARUP is the best lab for enterovirus testing.)
Your HHV-6 does not look hugely high, so it may not be worth retesting at Focus Lab. Your EBV may be worth retesting at Focus Lab. You need a test that gives a result in antibody titers such as 1:640, not 3.41 like your result is. In the article that I posted it says: These authors find EBV VCA IgG of >=1:640 and EA of >=1:160 in patients with chronic active EBV infection (CAEBV). So, you would need to be tested for EBV VCA IgG and the EA. Test # 2420 would give you what you need:
You might want to get that retested a month after your first test to see if you antibody titers are rising or falling.
Out of all the test results you posted, I'd check into ASO again, and discuss that with your doctor, consider retesting the EBV at Focus lab, and possibly get tested for Enterovirus at ARUP.
However, first fix your hormones, as that could be causing your problems. What are your symptoms? Then if you are still not well, check into the other possibilities.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Timaca.. Are you well now that you've treated these viruses?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
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posted
Lymetoo~ I am much better. I am not well (yet). I am still in treatment. I have a friend who is almost 100% well. I know two people personally that are 100% well after treating the viruses.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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