I got some more co-infection results back from my doctor and it looks like a major problem for me is HHV-6. Positive was greater than 0.9 on the test (LabCorp), and I came back at 23.4 !!! Yes, I thought the decimal point was in the wrong place, but apparently it is correct.
Others that came back positive were C. Pneumonia, Mycoplasma, EBV, HSV, and Babesia. Not so worried about these, since the numbers didn't look too terribly high. Will be treating for Babesia.
Does anyone have this high of a load of the HHV-6? I am now more concerned about this than I am the Lyme and other infections. Perhaps it is why I am so sick?
What are you doing to treat it? I have been given Valtrex, but read mixed results about its effectiveness. However, I read Valcyte was much better, but very toxic and prone to adverse effects.
I was also told to purchase a specific type of transfer factors called "PlasMyc". I have no clue what transfer factors are. Anyone take these?
I am really freaked out about having such a large amount of a virus from the herpes family chilling out in my body. Help!!!!
Thanks :-) KJ
Posted by Fuel1212 (Member # 29312) on :
I have Mycoplasma and HHV6 also. However, my number is not as high as yours for the HHV6.
I have also heard that Valcyte is the drug of choice.
The transfer factors are chicken based colostrum pills. The way I understand it is this.
The chickens are most likely infected with specific infections. (Lyme, myco, HHV6, etc) The chicken's immune system produces the specific antibodies needed to fight the infection.
These are passed down through the colostrum extraction and orally taken by the patient.
These antibodies are used by our immune system to hopefully counter act the fact that lyme, or whatever has tricked the immune system into not fighting the infection.
This may be off, but I think it is pretty close.
BTW- I have taken Researched Nutritionals Transfer Factor products.
Posted by mookie333 (Member # 26021) on :
Hello I am one of the high load hhv-6 people. I tried to treat with olive leaf extract...and finally my LLMD-wanted me to try Valcyte.
My level of fatigue was so so bad...I was ready to try anything...so for me it's been 5 months now and I have 1 more month to go and then I am completed. I take 2 pills in the AM.
In the beginning it was rough...the fatigue and other symptons..but to be honest with you..I feel like I have made improvements. As a matter of fact I have a repeat level for hhv6 to be drawn today.
I will let you know what my levels are now and compare to see if any of the treatment worked.
I have also taken colostrum and transfer factors and both of these did nothing for my fatigue or white cell counts...
Coincedentally my white count has been above 3.0 for the first time in over a year...so who knows...
mookie :-)
Posted by Marcie (Member # 10070) on :
My HHV6 is high too. I will be taking transfer factor and will let you know how it goes once I start. I have heard good things about transfer factor, so I am keeping positve about it. My score was 9.56, so not as high as yours.
Posted by bigstan (Member # 11699) on :
Oh, it's much simpler to bring the levels down by taking Lauricidin pellets available online. Start with 1 pellet and work your way up. There can be a certain amount of herxing, so go slowly.
Also, my LLMD gave me Guna homeopathics Virus & Citomix. Within a few months my levels were down.
Posted by kidsatlast (Member # 4308) on :
I got tested at Lab Corp for HHV-6 and my level was 25! My LLMD was very concerned but doesn't feel comfortable with using Valcyte because of possible serious side effects so I am waiting to see another LLMD who does use Valcyte. From all the reading I have done, I decided that I only want to try Valcyte and I don't have confidence in anything else at the moment.
Posted by canefan17 (Member # 22149) on :
Can Lomatium hit HHV-6?
Posted by kim812 (Member # 17644) on :
I had a high level of HHV-6 also. Mine was 22.44 and I too thought the number was wrong! I did try Valcyte for a short period of time but had terrible side effects so had to quit. My doctor who was treating me at the time said that just because my antibody level was high didn't mean it was an active infection....
I was wondering if there are specific symptoms which would indicate if the infection was still active..anyone know?
Posted by aperture (Member # 34822) on :
Mine is 39.82.
I don't have symptoms of active HHV6 disease, so I'm not getting any treatment for it.
Apparantly, once Lyme and co. is gone, the gate gets closed and the immune system is able to take care of stuff like this. (WRONG:Disregard)
[ 01-29-2012, 09:43 PM: Message edited by: aperture ]
Posted by kim812 (Member # 17644) on :
I don't think I have symptoms of an active infection either...I don't think my Lyme is gone but also don't believe the HHV6 is active..at least in my case
Posted by timaca (Member # 6911) on :
Symptoms for chronic viral infections (like HHV-6) are the same as for chronic bacterial infections (like Lyme). You cannot tell the difference between the two by symptoms.
Those are some very high numbers that you are talking about. (Above 20)
Taking care of Lyme will not necessarily make the viruses go dormant and vice versa (taking care of viruses doesn't mean the bacteria will go dormant).
My approach is treat first what looks really wrong and work down the ladder.
For some of you, I'd take a very careful look at your HHV-6 results and consider additional testing and possible treatment.
Best, Timaca
Posted by aperture (Member # 34822) on :
What type of Dr would be able to delve deeper into the high test results?
Posted by kim812 (Member # 17644) on :
I was seeing a well known CFS specialist in Boston who did my testing. He told me that even though my anti body levels to HHV6 were high it did not mean the infection is active. He would not treat me with an anti viral because he said they were not proven to help.
My Lyme doctor years ago also did the HHV6 testing and my results were negative..no number or titers were listed. It seems strange that I would show a negative result when I was at my worse and now my test results are high.
Posted by timaca (Member # 6911) on :
Kim~ It would be a good idea for you to keep track of all your lab results: what lab the tests are run at, and what the test results are. It could be that you were ill with one pathogen, then the immune system took a hit and other pathogens reactivated.
Best, Timaca
Posted by kim812 (Member # 17644) on :
I will take a look at all my results...problem is I have been seeing so many different doctors and they all used different labs for the testing. It is very hard to know how they compare to each other. I am thinking of having my current doctor run the testing at the same lab the CFS doctor used and see if the results are similar since it has been almost a year...
Thanks for that info...great stuff
Posted by timaca (Member # 6911) on :
For those of you with high titers, what lab were the tests run at, and what is the reference range?
Your doctor would need to order that it goes to Focus Lab, and it is a very good idea to speak with your local Quest lab director informing them that you will need to have your blood sent to Focus lab, so they can make the proper arrangements.
Try your best to use the same lab for the same pathogen each time.
I use Focus lab for most of my pathogen testing, but I use Quest Nichols Diagnostics for HSV1 and ARUP lab for Coxsackie B. Quest lab is used for all my other "normal" lab tests. My local lab is very good (bless them) at getting my blood where it needs to go.
Your result seems very high to me and I would suggest a repeat test at ARUP lab (perhaps adding in this test: http://www.aruplab.com/guides/ug/tests/0060071.jsp ) and possibly also getting tested at Focus lab. If your results are still that high I would discuss this with your doctor. I would not ignore that result.
Best, Timaca
Posted by aperture (Member # 34822) on :
Thanks for the info Timaca.
Thankfully, I have my next LLMD appt this week. My ID Dr also wants me to come in, so I will definitely discuss it with both and request the follow up testing. Maybe that's why Doxy/Rifampin/Plaquenil for 2 months did nothing for my daily low-grade fevers (up to 100.2 every single day for months) Posted by CherylSue (Member # 13077) on :
Mine was 23.44 (Lab Corp) back in October. I've been Transfer Factor PlasMyc for a few months. Maybe, I've improved a bit, but won't know until I'm retested. I also take Lauricidin pellets, too.
My doc says Transfer Factor works for some and not others. You won't know until you try.
Posted by MichaelTampa (Member # 24868) on :
IV ozone is another option, as if GcMAF injections, or homeopathic GcMAF (HomeoK MAF from biopure europe).
Posted by timaca (Member # 6911) on :
Hi aperture~ Follow up with your doctors (especially the ID doctor) is a good idea. Suggest he look at the Stanford website.
CherylSue~ I couldn't access any info about the HHV-6 test on the Lab Corp website. I would follow up on that test result though as it also seems high.
Best, Timaca
Posted by kim812 (Member # 17644) on :
My HHV6 testing was also done at Arup Labs...that result was 21.44 not 22.44 like I thought.
The other labs the various doctors used were Labcorp which just gave me the negative and no numbers and Quest which I don't have the actual test result...
I am going to talk about this with the doctor tomorrow..thanks timaca
Posted by timaca (Member # 6911) on :
Kim~ You are welcome. Good luck.
Best, Timaca
Posted by aperture (Member # 34822) on :
Important: Please disregard my post above about the stealth infections clearing up once Lyme is taken care of. I'm still learning Posted by nonna05 (Member # 33557) on :
What IS tranfer factor.....Do these high numbers on test basically cause extreme exaustion/weird sleep/weakness/any pain???? aperture did you find any thing yet to help????
timaca how does a test show previous infection a so=so numbers and while on some treatment numbers go way up ???
Posted by aperture (Member # 34822) on :
nonna05: I haven't started any new medicine that would help, yet. However, my LLMD is very interested in the info from Stanford (the website Timaca listed above).
Oddly enough, my little 2 yr old son has HHV6 IGG AB levels of 21.86 (reference range is <0.89). Don't know what's going on there??
Posted by timaca (Member # 6911) on :
nonna~ A chronic HHV-6 infection can make one very ill. I know a man who was very sick for 18 years (even bed bound at times). He was diagnosed with Parkinson's disease and Lyme disease among other things, but he had an HHV-6 infection. 8 months of valcyte cured him. He has his life back now.
I would suggest you get tested at Focus Diagnostics lab and do lots of reading on the HHV-6 and Stanford websites.
I don't understand your second question. But I'll take a guess at what you were asking. IgG antibodies show exposure to a pathogen. Most people have been exposed to HHV-6 so you will have antibodies to that pathogen. But, if you have antibodies that are higher rather than lower than you may have an active infection going on. See: http://www.hhv-6foundation.org/patients/hhv-6-testing-for-patients
It helps to have tests run on a regular basis to see if numbers go up, down or stay the same. For instance, my Parvo results are always in the 7s. Even though this is above the reference range, it just shows past exposure. If it were in the 15s or 20s I think my doctors would be looking more closely at it but it has always stayed in the 5-10 vicinity so it is not a concern.
However, I've had Coxsackie B, Cpn and HSV1 antibody titers as high as the lab measures. Treatment for these pathogens has resulted in better health for me...and antibody titers have dropped, indicating I am indeed successfully battling the pathogens.
Titers can bounce around some (for example go from 1:320 to 1:640) but that is just a one dilution difference and doesn't mean anything. If, however, a titer goes from 1:40 to 1:640 or higher than that likely means you are experiencing a reactivation. That happened to me once with Coxsackie B and it was horrible.
Best, Timaca
Posted by nonna05 (Member # 33557) on :
Ok ..Thank You both....Now I have to go find my test and call old doctor for previous results...
Have had Valtrex and am on a natural virus fighter....
My last numbers were high.
Pretty sure I haven't been tested for specific types like you mention timmaca.
Even though I'd been to over 7 ID doctor's and lot's of testing ..Before LLMD diagnosed this Aug.
It just doesn't seem familiar. Which really doesn't make sense that one of the 10 plus Specialist's wouldn't look for any of those mentioned.
Wouldn't some of it be a basic profile testing ,when you have somebody very sick and can't figure out why....
I don't mean now. I mean the 4 plus years tests and asking for people to think outside of box.
Lord, I'm the one who came up with Brucellosis idea......One doc wouldn't test ( basic blood sample) but did MRI's, Gallium scans CT's all kinds of blood work ( think kinda same tests over )
So what is this Transfer Factor??? What does is it do? Is it NT factor ??/
Do above symptom's match or is it all a cross over???
I was near kids that were just getting over Chicken Pox this Summer...would that matter?
When people ask how does IT feel.... This illness or 'es.. I usually say it's like having MONO, Pneumonia, and the Flu and Fibro. at varried levels ALL the time.
I know...One day it will be better... It's just so amazing how many thing's crop up... What does anybody out there do without this site?
Posted by nonna05 (Member # 33557) on :
Valcyte...I should have asked what the bad side effects are???????
Is this what helped you, tamaca????
Sometimes I think my brain is going to fry trying to figure this stuff out....
Yes, my LLMD is working to help and know's alot..but you never know what might help them /help you and other's. Posted by timaca (Member # 6911) on :
apeture~ If your child is healthy I would not be concerned about that test result. He could have either recently had HHV-6 and the titers will drop or they are higher because he is exposed to you...
Nonna~ HHV-6 is not on the radar screens of most doctors. I went to over 17 doctors (including two well known LLMDs) and no one thought to test me for infectious viral pathogens (except Parvo virus). I mentioned to my ID doctor that once he figures out this illness he will need to educate his profession!
I've not used transfer factor. I am aware of one person who has taken antivirals and transfer factor and he is mostly well now.
Best, Timaca
Posted by ktkdommer (Member # 29020) on :
My son went from bedbound and not in school to back in school with pretty good attendane and is playing basketball 2 days a week. He isn't 100% by any means, but I wonder how much Valtrex played into his improvement. He has several high viruses upon first testing for Lyme and other issues. He will get rechecked this summer.
He has taken Valtrex for 1.5 years.
Posted by TF (Member # 14183) on :
Nonna, you asked what Transfer Factor was. It is a product that strengthens the immune system. It is not the same as NT factor. NT factor helps the mitrochondria in the cells if I am not mistaken.
When my white blood cell count went too low, my lyme doc had me take Transfer Factor. In 2 weeks, my white blood cell count was back to normal. It was like a miracle.
The white blood cells fight infection. If you don't have enough of them, you will catch every illness you are exposed to. That can be dangerous. So, this is what my doc used the Transfer Factor for in my case.
I understand that some cancer doctors are using it for this same purpose in cancer patients--to help them get back a normal immune system.
It is not unusual that a lyme patient ends up with a low white blood cell count after a long time on antibiotics. (The body stops making white blood cells because it senses the antibiotics and thinks white blood cells are no longer necessary. The antibiotics are killing the germs instead.)
My doc had me take Transfer Factor by 4Life. It was made from bovine (cow's) colostrum. Colostrum is the first milk a mother produces. It gives her immunities to the infant. So, that may help you understand what Transfer Factor does for a person.
Posted by shannon12 (Member # 36149) on :
kj15 you said your hhv-6 was 23.4. I'm looking at my lab work from 2007 and the reference range is <1:10, mine is 1:80, is that where your getting the 23.4?
Posted by shannon12 (Member # 36149) on :
I also test positive for hhv-6, ebv, and chlamydophila pneumoniae, these tests were taken by a doctor i've seen for fibromyaligia for 8 years, which i had to stop seeing because of cost, not I'm seeing him for the lyme. It's so hard to tell if i had the lymes for 8 yrs now or got it 9 months ago when I had the rash. I'm trying to see if it is common for lyme patients to also have these chronic illnesses? My doctor treats these chronic viral and other infections with valcyte, immunovir kutapressin, anti-retrovirals, anti-parasitics,valtrex, ganciclovir, also does anti viral iv's. There's a very good article on it, includes studies done that showed significant reduction in these viral loads.http://www.prohealth.com/library/showarticle.cfm?libid=16277
Posted by timaca (Member # 6911) on :
Your test and result is different....1:80 vs kj15 test who has a result that is not a titer but is xx.x
Best, Timaca
Posted by shannon12 (Member # 36149) on :
oh, i see it does say within normal range but the interpretation is: past infection and my doctor had my on valtrex years ago for it, but again i never took my meds like i should have. my m pneumoniae igg is 3.38H, and c pneumoniae igg 1:256H, my doctor said a lot of times you will be in normal range for a lot of these tests but they reactivate and then go dormant constantly and that's why im always sick, suffered terrible the last 8 years and now the lyme. omg. I wish you the best also.
Posted by timaca (Member # 6911) on :
My IgG and IgA for Cpn were as high as the lab measures. The IgG is still as high as the lab measures, but the IgA went from >=1:256 to 1:16 on rifampin and doxy. I am going off the antibiotics tomorrow and I had a blood draw today to check where the Cpn is currently at...then we'll see.
We need to address some viruses in me now...but honestly I'm feeling the best I have in 8 years of being sick so (knock on wood) this continues....
Best, Timaca
Posted by aperture (Member # 34822) on :
Timaca,
You give so many of us on this board hope!
Thanks for getting me to realize that bacteria AND viruses are at the heart of my probs. Posted by timaca (Member # 6911) on :
aperture~ You are welcome. We all learn from each other and we all help each other.
Thanks for the
Timaca
Posted by Larae30 (Member # 35220) on :
I just found out yesterday that my HHV-6 is 10 something, so my dr. wants me on transfer factor. I also had very high EBV numbers at the beginning of all of this. Does the HHV-6 come from the tick or is it reactivated, like the EBV is?
Posted by timaca (Member # 6911) on :
![[Frown]](frown.gif)
![[dizzy]](graemlins/dizzy.gif)
![[shake]](graemlins/shake.gif)
I know...One day it will be better...![[Roll Eyes]](rolleyes.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Timaca