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How many of you had EBV, CMV, HHV6 or another virus before you became ill?

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Posted 2/9/2010 12:32 PM (GMT 0)
I'm just curious because it seems like I didn't start getting really sick until I was diagnosed with EBV(Epstein Barr Virus). I had been having weird symptoms off and on for years but got really sick at the end of 2008 when my doctor caught EBV.

I've had Epstein Barr, Cytomegalovirus, HHV6 and Mycoplasma.

Posted 2/9/2010 9:05 PM (GMT 0)
I am being tested for those exact virus's tomorrow. Have had Lyme since 1996, just found out in Feb of 09. Now it's taken over my life, I'm like you I can have a good day, go out do things and boy do I pay for that good day. I am from Mississippi so I thought we might have seen the same doctor? I have seen several in this area and one in California, he is the one that found out I had Lyme. Anyway my best to you I will let you know my results.
Posted 2/9/2010 9:09 PM (GMT 0)
I have the herpes virus which ever one that is, Epstein bar.
Posted 2/9/2010 9:34 PM (GMT 0)

CajunGrl said...
I'm just curious because it seems like I didn't start getting really sick until I was diagnosed with EBV(Epstein Barr Virus). I had been having weird symptoms off and on for years but got really sick at the end of 2008 when my doctor caught EBV. I've had Epstein Barr, Cytomegalovirus, HHV6 and Mycoplasma.

It's interesting that you brought this up, because at my first appt with my LLMD I showed some of my lab results from 2008 with super-high levels of antibodies to both EBV and Cytomegalovirus. I was told that it's common for people with Lyme to have a very high viral load....I guess because of the damage that Lyme does to the immune system?
Posted 2/10/2010 6:21 AM (GMT 0)
humm, I have all of them and wonder if the tick carries that stuff??? they carry the stroongyloides parasite and the amobiea fragialis . I think these ticks are loaded with
every virus. and then you end up in autoimmune state and then if you are on high steroids for too long you get cancer or parkinson or leukemia. I want to get that plum island book now.
the whole thing is too suspicious and obvious. I just realized today how really mad i am about trying to push a bolder up an ice hill for half my life and always blaming mysef for not being strong and why am i always sick thinking I was a sorry ass mental case. I'm shocked that I am getting the answers to all my 30 yrs of questions in one week. I feel like I crossed over into the other side. like i died and am looking back on a life in a black out. it is mind blowing
Posted 2/10/2010 6:26 AM (GMT 0)
Hey you know what else?? how do you get mono out of the blue. I think it from tickish stuff. also is it true that anyone who had mono ends up with chronic fatigue. and then some thyroid stuff. my sister did.

I feel like my whole famly has lyme. its too susppicious. when i tell lyme doc that I grew up on Long island they say ..your whole family probably has it. ....
Posted 2/10/2010 6:34 AM (GMT 0)
Hey Trician,

Welcome to the forum! It is good to hear from you. Send me an email and I will tell you which doctors I have seen so far. We can exchange information.
Posted 2/10/2010 6:37 AM (GMT 0)
therearemiracles,

The herpes virus you probably have is HHV6. It's not the one you get on your lip or in your private area, just so you know.
Posted 2/10/2010 6:38 AM (GMT 0)
nasalady,

I agree with you. Have you been treated yet for those since your titers were high?
Posted 2/10/2010 6:42 AM (GMT 0)
bucci,

Lyme weakens the immune system so that's why we pick up these viruses. We could have been around someone who was a carrier and caught it that way. Most of these are caught through breathing in the droplets from someone else, the same way we catch the flu. Some of these viruses lay dormant in our bodies for years and come out when we are stressed or have a life changing experience, just like Lyme does.
Posted 2/10/2010 7:09 PM (GMT 0)

CajunGrl said...
nasalady,

I agree with you. Have you been treated yet for those since your titers were high?

Sorry for my ignorance.....is there actually a treatment for these viruses? I didn't know! Should I ask my LLMD or my PCP about this?
Posted 2/11/2010 8:09 AM (GMT 0)
Nasalady,

If your titers were high enough, an LLMD usually treats with Valtrex for EBV. I'm not sure if CMV is treated or not. My titers weren't high but it's funny how I got so sick after I was exposed to EBV. My primary said that some people just don't recover and stay sick for a long time. I think I may ask her to try the treatment and see if it helps. She is very open minded and will tell me if she thinks something will help or not.
Posted 2/12/2010 3:00 AM (GMT 0)
Yup I have the cyto virus, HHV6 and epstein barr... I had mono a long time ago, around te same time all my thyroid problems started.. and the lyme.. but treated with only 2 weeks antibiotics so it did nothing, but I think all those viruses probably all run together with the lyme!
Posted 2/12/2010 1:18 PM (GMT 0)
CMV is treated, it is an important virus to treat. It is treated with anti virals as the others are.

Some LLMD's state once you get your Lyme and Co's under control your immune system will take care of all the virals.

I personally feel it is very important to treat the virals along with Lyme and friends.

I know it made a HUGE difference for me after 2+ years of treating Lyme when we started to attack the virals.
Posted 8/21/2010 12:32 AM (GMT 0)
I'm new to the group. I find it so amazing that no doctor has the answer to the ongoing sickness we have. I have had problems since 2/2006. I have had both EBV & CMV on and off these last 4yrs. In my research I came across Hashimoto. It is brought on by EBV and even if your FT4 & FT3 & TSH show up normal you could still have it. Dr's need to check the Thyroid anti-bodies to detect it. I hope this info helps. Good Luck & Good health :) 
Posted 8/25/2010 3:29 AM (GMT 0)
I had a mono test my results showed the ebv to be 400 with normal being 16 this is alS I could see from the results. I researched it and found some people with autoimmune diseases such as lyme or ms have a high ebv load, for me its a clue to a diagnosis of my having lyme but I sorta doubt my family pa will see it that way. She has mentioned cfs and fibro. One blessing it brought was pain pills. Thank God. we actually once ordered darvicot online at a horrendous price because she would not prescribe even though my lyme dr. always gave me way more than I used as he did not beleive pain is good for the body as well as he is human but I quit him maybe 5 years ago, we lost ins.
Posted 8/25/2010 5:02 AM (GMT 0)
If you will read the 2nd paragraph of my signature, you'll see the viruses that showed up on my labs. Who knows about the CMV because I was never tested for it. I was positive on ALL viruses I was tested for.

I think we have discussed this before. Unless we were tested for any of these viruses prior to when we KNEW we contracted Lyme, at this time it is not possible to determine which came first.

The positive viruses indicate autoimmune issues. After a LOT of research on these (not including CMV), I learned that MOST people have antibodies to these viruses because almost everybody has either had these illnesses or has been exposed to them -- that is the reason the antibodies show up at all on our lab work -- almost everybody has these antibodies, because these viruses are so common.

However, if our test results are high enough, then these viruses have reactivated and indicate active infections.

Lyme may have compromised our immune systems, therefore the infections we had in the past, which were not active at the time, are reactivated, again: indicating compromised immune system.

ON the other hand, any of these viruses could have compromised our immune systems, preventing our bodies from fighting Lyme naturally when we were exposed. (or properly reacting to the prescribed treatment of 3 wks of abx) These viruses could have become active during times of stress, disease, and many more possibilities.

My LLMD is doing research on HHV6 and is actively seeking connections to CFS, MS, and Lyme, amongst others. I think that he believes that this virus is a culprit in a myriad of infections and diseases.

So, did you contract Lyme first, or did you have active viral infections which reduced your body's ability to fight the Lyme? My belief is that this is not known or understood at this time.

At this time, it is a mystery
Posted 8/25/2010 2:58 PM (GMT 0)
322sandread, welcome to the forum! It's interesting to read this thread. I don't even know if I was tested for viruses other than EBV. I'm going to ask my doctor if he's tested for the other viruses, and if I have had a thyroid anti-body test. Thanks for sharing that information.

Rose
Posted 8/25/2010 4:41 PM (GMT 0)
Rose,

Thanks for the Welcome :) I hope your Dr. will listen to you and check the Antibodies. Hashimoto's has such a amazing connection to all these viruses. Good Luck & good health.

Keep me posted I'd like to know what you find out.

Sandrad

BTW: love your quote at the bottom :)

Posted 11/19/2010 6:35 AM (GMT 0)
I have been sick for 40 years and diagnosed with RA when I was 18...followed by CFS, FM, Lupus, Hashimotos, EBV...and then 5 years ago Lyme and now raging HHV6...the labels NEVER end confused    I have spent hundreds of thousands in the last 40 years because I am a big time fighter...but all I have felt is broke.  I am currently using a RIFE machine for the Lyme with limited success.  I am completely disabled and hae severe spine/neck pain...

My doc recently put me n Gamma Globulin Injections.... After my 4th injection I noticed in my journal that my pain level dropped to a 4 and I actually went out dancing two weekends in a row and for a few long walks.

I have now been off of Gamma for 3 weeks and neck pain and body pain has ramped back to an 8-9...sooooo I have to wonder what the Gamma was doing.  I plan to get back on the shots and will keep you posted on my progress...

FIGHT ON!!! rolleyes

Posted 11/19/2010 7:20 AM (GMT 0)
This is an intriguing question. I was mildly sick with the exception of some pretty severe neurological and autoimmune problems that went undiagnosed for the first 5 years. I was in an abusive household and underage, so I never was given a chance to go to the doctor and address the problems. Then I got Mono and I simply never recovered. I've been slipping downhill and worse for the most part since then, despite my best efforts to fight back.

But I will win!!!
Posted 11/19/2010 9:02 AM (GMT 0)
jacs, what type dpctor give gama globuine injections. are thy intramuscular, ? how much d they cost?
Posted 11/21/2010 9:22 PM (GMT 0)
Hi Jacs!!
Welcome to our forum! I am sooo sorry to hear what you have been through with your health! You have found a great place to come & learn with the rest of us though!! I'm sure you will find us to be a caring, understanding & helpful group. I do hope that you get back on something that will help you with your pain. Please do be sure to keep us updated!!

Wow, Moral.
That's quite a rough start to life! I'm really sorry to hear that.
Although I find it interesting that you mention Mono & then never recovering. I felt that Mono was the start to everything for me for a long time as well. I had Mono several times, but then when I was a HS senior, I had Mono 5 times that year. It wasn't until I learned quite a bit about tick-borne illnesses that I realized I had had RMSF at the age of about 5 yrs old, & that was what really started it all for me. I am not hinting that you are wrong, btw, just found it interesting.
Posted 11/22/2010 3:16 PM (GMT 0)
Unfortunately, I think that if you aren't tested for everything at once, there is no way to know for sure...and as it has been said, often there is no way to know which came first.

I had mono when I was 16. I feel that I recovered. Once out of college my health went down hill (actually during college, which is when I believe I was bitten for the first time) When I first saw someone LL, my WB came back neg, but based on my symptoms, ruling out everything else, and my CD57...he concluded I had Lyme. I was not willing to accept that so...fast forward 4 years. My then PC thought I had CFS and tested me for everything under the sun, including all sorts of viruses. I was IgG pos. for HHV-6, EBV, and Mycoplasma Pneumonae.

Twice, I was on Valtrex 1g bid for 6mo. Did it help? Don't know. I know it takes a LONG time, though I am not sure why...I decided to go off because it does stress your liver and I am already on a high dose of doxy.  I am hoping to start on some herbal protocols that help with viruses...I agree that both have to be treated but as far as what came first? No idea. I do find it VERY interesting that so many of us ALSO have these viruses...and I too, have Hashimoto's...

Posted 11/22/2010 6:33 PM (GMT 0)
Dear Jacs,

Welcome to the forum!

I'm so so sorry to hear what you've been through! I certainly feel your pain....I have been diagnosed with Hashimoto's, FM, lupus, RA, celiac disease, autoimmune hepatitis, psoriasis, Lyme, Babesiosis, HME, and Bartonella. Plus EBV and CMV.

It's so interesting that you say your doctor gave you shots of gamma globulin and it helped! My pediatrician used to give me shots of gamma globulin when I was a little kid. I always had a lousy immune system and was told it would help to keep me from getting sick so often. I still got sick a lot though.

Please keep us updated on your progress! I'd like to hear more about your success with the Rife machine too, if you have time.

Thank you for your courage....FIGHT ON!

JoAnn
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