Viruses and/or Lyme Disease

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Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 7/10/2009 11:49 PM (GMT -6)   
This article pretty much confirms my fears that maybe I don't have Lyme but instead a strange virus that mimics Lyme. It's really interesting; sorry if you've already read it!

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=55

Viral co-infections serious and common

Viral co-infections w/lyme disease are very common, especially if corticosteroids have been administered. Corticosteroids can be given by injection, inhalers, nasal, creams and other ways. Corticosteroids are the most common, but other medications can also be responsible. Corticosteroids are not the ONLY way to reactivate viruses, stress and many other factors come into play.

Re-activated viruses can range from mild to deadly. Usually attacking the peripheral nervous system and causing many symptoms that mimic and can even be mistaken for Lyme Diseases symptoms. Having both Lyme and active viruses is more common than you'd think. No outward signs such as sores are needed to have these viruses, as they can activate internally causing postherpetic neuralgia throughout the nervous system. Some symptoms include; for lyme disease and viral illnesses are almost the same. Every part of the body can be affected. Headaches, brain fog, internal vibrations, ear ringing, joint pain (severe at times), muscle pain, nerve pain, cardiac issues, “heart burn”, fatigue and feeling off balance, to name a few.

If you have been diagnosed with Lyme and have excruciating pain that seems above and beyond that of other Lyme patients it is very possible you have re-activated viruses. Other's will show nothing more than Lyme symptoms. Igenex bands 30-31 can cross react and show positive when viruses are present. If you have had any corticosteroid treatment, are in excruciating pain and these bands show positive, you may have viral issues.

IGeneX now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses.

It is estimated that by midlife nearly 100% of the population has antibodies to some type of herpes type viruses. If you have had chickenpox as a child, HSV-1 cold sores, HSV-2 genital herpes, Rubella, mono (Epstein Barr virus) and others these viruses lie dormant in all of us and can be reactivated in a 'downed' immune system. Immunosuppressants, such as corticosteroid treatments are common at "reawakening" these viruses and mixed with Lyme can cause severe pain especially neuropathies. Many of these viruses are airborne and all of us likely have one or more.

An Md at Stanford believes the 'antibodies' themselves create symptoms an should be treated. He will treat those with negative IgM's (his opinion, Md's mistakenly believe a virus is not active if the IgM is negative) and high IgG titers. His belief is IgG titers matter and should not be discounted by Md's. This Md has run small studies and currently is running clinical trial's on Valcyte (a drug itself that needs to be researched indepth as it may cause cancer) A smaller trial of 12 people proved successful with 10 of the 12 having full resolution of symptoms and return to normal health.

A well known LLMD I have seen active in HIV in the 80's and well informed with viral issues insists that IgG is not significant, IgM indicates active infection and therefore needs attention, but IgG results, he literally crosses off the lab results. Talk to your Md regarding what he believes the IgM and IgG indicate in viral testing.

It is highly suggested that you have your LLMD run a full panel for viruses, IgG and IgM.

Here are a few to test for:
HSV 1&2 IgG and IgM
EBVCA IgG, IFA EBVCA IgM, IFA
EBNA AB
EB early AG IgG, IFA
Cytomegalovirus IgG Cytomegalovirus IgM
HHV-6 AB IgG, IFA HHV-6 AB IgM
Rubella IgG Rubella IgM
Varicella-zoster ACIF Varicella-zoster IgM
Parvovirus IgG Parvovirus IgM l
HHV-7 IgG HHV-7 IgM

The use of antivirals, such as acyclovir, valtrex, valcyte, famvir in active viruses can help them to stop replicating, although they do not kill the viruses, it is still quite important to get on an anti-viral if you have viruses immediately and remain on them until they go dormant, which may take years.

Links of interest:
Antivirals that are proven safe and should be tried first, usually long term 1+ years or ongoing. Speak w/your LLMD:

http://www.herpesweb.net/general/treatment/opt08.htm
http://www.hhv-6foundation.org./
http://www.hhv-6foundation.org/testing.html#elevate
http://www.focusdx.com/focus/0-home/index.asp (Recommend lab for viral testing is through Quest Focus Labs)
Valcyte antiviral trial abstract: http://www.ncbi.nlm.nih.gov/sites/entre ... med_DocSum
EBV Neuro symptoms: http://www.medhelp.org/forums/neuro/archive/3526.html
(Viral forums/Md links) http://hhv6foundation.proboards101.com/ ... =antiviral
Viral related info: http://www.ncbi.nlm.nih.gov/sites/entre ... stractPlus
HHV6 virus may be linked to MS: http://www.ninds.nih.gov/news_and_event ... 112497.htm
http://www.immunesupport.com/healthwatc ... spr002.cfm
CFS linked to HHV6: http://www.wisconsinlab.com/cfs.htm
Parvovirus in humans: http://www.cdc.gov/ncidod/dvrd/revb/res ... vo_b19.htm
EBV - (mono): http://www.cdc.gov/ncidod/diseases/ebv.htm
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/10/2009 11:59 PM (GMT -6)   
Jen,

Your doctor hasn't checked for these? I've had four of those viruses already and they all made me feel like I was dying. They are not active in me any longer and my titer wasn't high enough to treat them. Epstein Barr was the last one I had and it was aweful.
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 7/11/2009 12:10 AM (GMT -6)   
You only had band 30 not 31 so maybe if u do have any viruses in conjuction w lyme its not that bad a virus. i believe u have lyme and if some virus it is both because an ind band basically is a faintly pos band they just by law cant call pos cuz its nt dark enough but its there just the same . and lyme specific and spirichetal.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/11/2009 12:12 AM (GMT -6)   
i have the cmv and epstein barr virus, plus lyme stuff.. yeah..i'm totally syked

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/11/2009 12:14 AM (GMT -6)   
I had CMV, Epstein Barr, HHV6 and the regular fever blister.
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 12:15 AM (GMT -6)   
I haven't had insurance until now...so no I haven't been checked for any of them. And I know for a fact that the pain in my head/ear is postherpetic neuralgia from a bunch of bouts with shingles, so that will definitely come back as positive.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/11/2009 12:15 AM (GMT -6)   
man we r a bunch of sorry people hahaa
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/11/2009 12:16 AM (GMT -6)   
i love u guys!
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 12:17 AM (GMT -6)   
How do youguys know (unless you had a bite or an EM) that it isn't just the viruses???

Man I am filled with even more questions now!

I'm going to see my LLMD before I go in for my PICC and request that these tests be done.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/11/2009 12:24 AM (GMT -6)   
I'm sorry Jen. I forgot you didn't have insurance.

Yes, I would definitely ask to be checked for these. My Lyme doctor told me that these viruses go hand and hand with Lyme Disease. There has got to be a reason someone gets these. It is because our immune systems are supressed. From what I've read, only Syphilis, Aids and Lyme can weaken the immune system. My CD57 was 23 the first time and 43 the second time which means my immune system is compromised. It's supposed to be in the 100's. With it being so low, we start picking up viruses from others or the viruses are already in us in dormant mode and they become active with stress, etc.

Have your doctor also run a CD57 test too to see where your immune system is.
2003: Symptoms started;Anxiety,Panic Attacks,Heightened Senses
2007: Diagnosed with Lyme. Didn't start treatment.
2008: Symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1500mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements

**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 12:27 AM (GMT -6)   
What I meant is I'm not scheduled to see my LLMD before the picc but I sure as hell am now!
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"

Post Edited (Jendays247) : 7/11/2009 12:35:04 AM (GMT-6)


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/11/2009 6:39 AM (GMT 0)   
well i got sick after a camping trip but didnt put it all together till 9 yrs later after bad symptoms lead me to the poss of th lyme. u do what u think is right girl i think u hav viruses + lyme do to your bands. shingles is rubella and everyone tests pos for rubella your supposed to it is antibodies if u tested neg you wd gt vaccinated then later mk sure u test pos
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 12:43 AM (GMT -6)   
ahhhhhhh I don't know what to do! I feel like I just hit a dead end :( again.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/11/2009 11:16 AM (GMT -6)   
All of these viruses have shown up in me too and I was told over and over that this is consistent with CFS. It seems every single thing that's common with CFS is also common with LD. As CG said, LD weakens our immune system and then these viruses become activated. I think they are all inter-related and think you would not be doing any harm being treated for LD.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 12:32 PM (GMT -6)   
That's probably all true...but I know for sure I had shingles and some other viruses before I ever got sick. I had them during the end of high school and beginning of college...and I didn't get sick until after that. I suppose it's like a 'what came first' kind of situation...viruses can bring your defenses down to activate lyme and vise versa.

I may never get answers!
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/11/2009 2:25 PM (GMT -6)   
Jen,

Do the virus testing. It will tell your doctor alot about what's going on. And make sure to get the CD57 test done. It's called an Nk Stricker Panel.

If you don't get better with the IV, you can always have more tests run but it seems like you've had alot done already.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

<FONT color=blue>**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 6:46 PM (GMT -6)   
So, if virus testing comes back positive, it's really just a matter of whether it's active or not, right? Because you can't do anything if it isn't active and your body has already been exposed to it.

I guess when I first read it I assumed that the viruses that can mimic lyme didn't have to be active, but rereading some, I realize that it's really saying that 'if you have lyme and/or ACTIVE viruses' etc., symptoms can overlap.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/11/2009 6:53 PM (GMT -6)   
Correct. They will only treat you if the virus is current and your titer is high enough or borderline.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 7:03 PM (GMT -6)   
See, I disagree with something in this article:

"No outward signs such as sores are needed to have these viruses, as they can activate internally causing postherpetic neuralgia throughout the nervous system."

I have postherpetic neuralgia and the pain is frequent...but from what I've heard from doctors, shingles pain can be chronic and it doesn't necessarily mean the virus is active; it is just residual nerve pain.

Oh well, I'm calling the dr. Monday and we'll see how fast I can get the ball rolling. I don't want to wait a long time to get the PICC if that's what I'm going to do.

I wonder how long these virus tests take. If I send them to Igenex like suggested above, I can almost bet on 5 weeks or so.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/11/2009 7:12 PM (GMT -6)   
Jen,

If I remember right, I think it took about 3 weeks for my results to come back. I had the nurse fax them to me and read them before the doctor did, oops!

My daughter had shingles when she was little and it concerns me. I pray to God she doesn't have Lyme. She's had other symptoms too but I don't know if it's me over reacting or if I should be concerned.
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/11/2009 9:09 PM (GMT -6)   
So if a person tests negative for all the viruses (EBV, CMV, etc.), does that mean they really don't have any of these viruses, or ?
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/11/2009 9:24 PM (GMT -6)   
I would think virus testing is pretty accurate. It tells if you have it or if you have in the past.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/11/2009 9:32 PM (GMT -6)   
Yes, I would think so too. It caught a simple fever blister I had almost a year ago. I would think it was pretty accurate.

What are your thoughts on the testing Razzle?
I have Lyme Disease; Lyme Disease DOES NOT have ME!

**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/11/2009 10:10 PM (GMT -6)   
I question the accuracy in the setting of immune suppression. Otherwise, I've heard "everyone has been exposed to HHV*, where * is any of the different versions of HHV out there. But I have never had a fever blister or kanker sore, never had Chicken Pox (my Brother got them, but I didn't), never had EBV/Mono, etc. so I tend to agree with the results in my case.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.

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