Is it Lyme or a Virus combination or both?

Who here has actually tested positive through blood tests for Lyme?  Anybody have their doctor tell them that they were positive for Lyme but the blood tests indicated negative? 

I am wondering if these viruses, such as HHV6 cause chronic Lyme symptoms too.  HHV6 is close to as bad or worse than Lyme.  Read "The Virus Within" if you haven't.  Very deadly virus that is thought to be the primary cause for MS, some cancers, CFS, and possibily Lupus

No, I am not a solicitor in any way, just got the book actually. I won't mention it again, but I am very interested to hear peoples responses and whether the Lyme test was a Western Blot, Emery or CD-57NK?

Your situation seems like the classic Lyme case.  Sorry to hear about that. Lyme is tough!

My wife has been diagnosed with HHV6, EppsteinBarr, Cytomeg., and parvovirusB19.  And on top of that she has an ANA and RNP abnormal positive count "without any other clinical Lupus features".  She also has a 57 on the HNK1 CD57, where normal range is 60-360.  This is supposedly a lyme indicator specific for lyme disease.  Could she have Lyme? She was negative on Western Blot and Emery more than once.  She was diagnosed at one point solely based on the CD57.  Is this right?

I am curious if anyone has the same pathology and is diagnosed for chronic Lyme or Lupus mistakenly.  She had also had good looking MRIs without any white matter or spots to rule out MS. I think that these are misdiagnosed frequently by LLMDs, Rheums, and Neuros when in reality HHV6 is running the show. 

However, I don't know if this is the case and would like to know if Lyme (if she has it) possibly could have weakened the immune system enough so that the viruses could gain strength enough to reactivate and be powerful.  Could Lyme still be positive in a scenario like this, where tested negative more than once?  Only 1 strand of protein was positive out of the 13 tested at Labcorp on the WB.  Keep in mind she is only 22.  Any experience or thoughts about this would be appreciated.  I have my own thoughts but I don't have experience like so many of you do.  Thanks!

Post Edited (Johncitis) : 6/18/2011 11:55:23 PM (GMT-6)

Hi Johncitis,
Wow, you guys must feel like you are on some kind of terrifying roller coaster ride these days. It looks like your doctors are being very thorough, and that is good.

Lyme disease is not just a test result. It needs to be diagnosed clinically, which is why it is important to go to a Lyme Literate Doctor. They know about the things that ride along with Lyme, the things that look like Lyme, and the fact that Lyme is a Great Pretender. Lyme is known to not only mimic diseases like Lupus, MS, Parkinsons, and Alzheimers, it actually can trigger them.

Lyme treatment has to be tailored to the individual. In my case IV antibiotics would have been too "violent"; the reaction would have put me in hospital. For others it's the only thing that works. And for still others, natural compounds are the only thing.

I'm not a medical professional by any means, but it looks like your wife has enough information to strongly suspect Lyme disease.

Short answer, you ought to see a Lyme Literate Doctor. For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net
If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Most Lyme Doctors do not take insurance because the cannot treat Lyme under the Insurance companies' guidelines. You can however submit your expenses and get a lot of it reimbursed.

Good luck! Keep us posted.

Interesting. We went to an ilads member lyme literate ND who is one of the top drs and leads the lyme movement in my area. She said she didn't have lyme. She recently started at one of the top clinics and they found these viruses, they say it could still be possible for lyme, but think that these viruses are the issue, especially considering she had only one positive protein strand and was therefore negative on the lyme tests. They think hhv6 if the issue. Another natural path chiropractor is the one who said if her cd57 if below 100, she was positive. He also is a kinseologist, who does those tests and the chinese healing. He has no medical education besides chiropractor and chinese medicine and conventions. Mine alone is at 60 and I have never had any symptoms at all, perfectly healthy besides a127 high ldl cholesterol. Thoughts?

If your negative on lyme tests where you only have 1-3 stands, i don't think you have it but rather a virus, parasite or other bug that is treatable with ABX. You underestimate these other issues, but I guess to you it doesn't matter a long as you get better. This is the problem without knowing the science through the tests. Consider the viruses as in the end it will only help other people in the future.

Post Edited (Johncitis) : 6/21/2011 1:48:49 AM (GMT-6)

No sweat. Thanks.

I am not telling anyone that their diagnosis is wrong. I definitely know chronic Lyme is a valid condition. I am not here for the political debate. I am saying to use an unbiased view as my LLMD did and consider the other factors, and do your own research, become a scientist and make sure your doctor loves research and is not biased in anyway. Doctors are humans, some just like to get paid and go home each night, and don't have time or just don't care enough. Some like to research and have a true passion for their work. These are called scientists. To be truly a good infectious disease doctor you have to be very, very, very intelligent and meticulous, able to decipher between the different symptoms, blood work, etc., as many of these diseases mimic one another so very, very, very well and BE A TRUE SCIENTIST.

When science is against your diagnosis, I think it is smart to be as sure as you can get and consider ALL other factors. In that same tone, if you doctor doesn't know what Lyme is or think it is the one month treatment - you better switch cause they are dumb a's and not big on research and should therefore not be called scientists.

Thus, I am interested in your opinion to whether you think having a low CD57NK count at 57 and 60 is a valid case for Lyme? And also having only one of out the 13 protein strands is a good case for Lyme? And also if negative tests could still be Lyme and why? Thoughts?

Also, I am interested to hear anyone's thoughts that have valid experience with HHV6 and truly know what it is.

Post Edited (Johncitis) : 6/19/2011 3:56:27 PM (GMT-6)

Any ideas in the cd57 test validity as explained above in my prior post?

She actually has band IgG 41 and is negative for IgM 41, and that's it. Been sick for 5-6 years. Nauseau for entire time and joint pain for 1.5 yrs and fatigue and cloudiness of mind.

Post Edited (Johncitis) : 6/19/2011 5:24:51 PM (GMT-6)

Yeah whatever it was whether stress or infection it caused the viruses to reactivate.

The CD-57 is not as accurate as some would like us to believe. There are some very ill individuals with highly positive Western Blot Lyme tests who have very high CD-57's. I personally believe that co-infections influence the CD-57 count. And unfortunately, the tests for coinfections are very inaccurate also.

Some places to go to learn more about diagnosis of Lyme:

http://canlyme.com/diagnosis.html   ~ this website has a lot of excellent info.

http://ilads.org/lyme_research/chronic_lyme.html   ~ documented seronegativity in those with culture/PCR-confirmed Lyme Disease.

http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf   ~ Advanced Topics in Lyme Disease, written by the famous Dr. B.

Johncitis said...
HHV6 is close to as bad or worse than Lyme.

This is a bold statement to be making especially in a Lyme Disease forum. I looked into HHV6 after reading this and apparently almost 100% of the worlds population has it. And it's unavoidable. I'd say that pretty much eliminates the need to worry about HHV6. Hopefully someday we will destroy all viruses and be super healthy and live to be 400 years old... but until then I do think Lyme is a much more clear and present danger. Good luck with your theories and opinions.

-MysteryLyme

Not underestimating... only stating facts. I'm on your side. I agree viruses are scary things. But everyone has them. Not only HHV6 but a variety of viruses are inhabiting our bodies at all times. And yes they are known to contribute to certain conditions as you've mentioned.

Worrying about these common viruses is the same as worrying about getting into a car accident. Getting hit by a bus could kill you but there's no way to predict or prevent it from happening.

"HHV6 is worse than Lyme" is going to be a tough sell here. Many lives including my own have been ruined by Lyme and we come here to help each other and share tips for recovery so hopefully one day we can live a semi normal life again. Lyme is serious. But the worst part is when people just don't understand. Good luck.

Hi Johncitis,
I too believe you have overstated HHV6's role in these diseases. I have now gone to two different websites - www.hhv-6foundation.org/overview.htm and hhv6.jottit.com/ - and neither of these state that HHV6 is the cause of the conditions you have mentioned, rather they say that it is a contributing factor, or "may play a role" in these diseases.

A lot of us here on this board have viruses that we have to deal with. Many of us have high titers of EBV, HHV6 or any number of other viruses. There was a discussion here a while back about which came first - the viruses or TBI's. It's like asking which came first, the chicken or the egg. Either way, by treating the TBI's, our bodies can better fight the viruses. That is where we concentrate on here on this forum - getting rid of the TBI's.

I believe it is a good thing to find out what viruses may be contributing to any illness, but this is a Lyme Disease board. If you feel the need to discuss HHV6 in detail, you need to find a HHV6 board where that is the main subject.
Don't get me wrong - we value your opinion! If you would like to read more on HHV6 and TBI's, you can use our search feature. I just checked and found that there are many posts about HHV6.

Thank you in advance for your understanding.
Trav