Positive For Hhv-6 Igg. What Is This?

[LindaJoy]

Hi, everyone.

I saw this doctor, in another state, last month to be tested for ME, thinking that may be the root of my health problems. This doctor is supposed to be a top ME doctor in the US. After seeing him in his office and doing some testing with him, a week later, my eating got really bad again and I had to go into the hospital for ten days, so I missed my follow up with said doctor to go over my lab results.

Since I got home, I haven't been well (as many of you have read), so I haven't been able to drive the hours it will take to see this doctor for my follow-up. Thus, we've been trying to get a hold of him over the phone to explain my situation and see if he had any findings he would be willing to share over the phone, but he refuses to talk with me about anything until I meet him in his office again, which, as I said, is in another state! After weeks of trying, my husband did get him to fax the results. Sad to say, though, he didn't give any interpretation with the results, so I have no idea what they mean. I've looked up the one and even had my pcp look at them. She's not too sure on them, either.

Anyway, I tested positive for two things. One was a pneumonia antibody. My pcp said that this respiratory flu I had around the time I had this testing done could account for that one, and since I don't have a breathing problem now, she's not concerned with that one.

But, the other one I tested high on was Human Herpes Virus 6 IgG. Anything above .99 was considered high / positive, and mine was 11.1. To me, that's pretty high.

Now, there was a Human Herpes Virus 6 IgM taken, too, and it was normal. The way my pcp read this was that, yes, at some time in my life, I had HHV-6. She said almost everyone gets this, so we all have the antibody. She then said the IgM shows if it's active or not now, or has been active recently, and since it was normal, no, I've had no activity lately.

I looked this up on the internet, and I really don't understand what they're saying, at all. I got on the HHV-6 Foundation site, and to me, it seems that the way my pcp read the test results is wrong, that the IgM doesn't really matter where HHV-6 is concerned, that is your antibodies are above 1.6 or so, that is considered high and you are considered to have active HHV-6 disease.

Does anyone here know anything about this? I think I read, or heard, too, that having active HHV-6 can cause autonomic problems.

I'm just wondering if this could be the bottom line for my health issues. Can any of you help me to understand this? I wish my ordering doctor would talk to me about this, but he won't, and my poor pcp, wonderful as she is, just isn't familiar enough with this high end testing to feel comfortable with her interpretation, which doesn't seem to be accurate.

Thanks, everyone.

Linda

[Katybug]

Linda,

I don't know about the HHV-6 tests. But, I wanted to let you know that pneumonia antibody test is used to see if your immune system is working at a prety basic level. They also use tetanus toxoid antibody tests for this too. The point is to see if your body has these antibodies which your's does as you tested positive, so that's good news. It means your body is able to produce antibodies to things you've either been exposed to or vacciated for. My immumologist did this test on me too.

Hope you get this figured out.

By the way, what is ME?

Katie

[LindaJoy]

Hi, Katie. Thank you for giving me that bit of good news about my ability to produce antibodies. I never thought about it that way.

ME is Myalgic Encephalomyolitis. Here in the US we call it Chronic Fatigue Syndrome, but in the UK, it's ME, and it's more neurological than what people believe. I don't believe I have it, but I'm not sure since the doctor hasn't talked with me, yet.

Again, thanks for posting.

Linda

[Katybug]

I found this site for you. Don't know if you've been thee already: http://www.hhv-6foundation.org/patients/patient-faq

[nunntrio]

Just out of curiosity was the pneumonia antibody for Chlamydia Pneumonia (not at all related to the STD). If so it can actually be more significant then thought. There is research being done at Vanderbuilt about the link between this virus and possible other conditions. Here is a good web site for that. http://www.cpnhelp.org/. The good news is that it can be treated with long-term antibiotics.

[sue1234]

Nunntrio, I had read all about that about a month ago. Very interesting regarding the ability to possibly feel better!

[HopeSprings]

Some Doctors believe CFS/ME symptoms may -in a subset of people- be caused by these viruses /baceteria. They look for high IGG numbers to test and treat with anti-virals and/or antibiotics. Look up A Martin Lerner and Dr. Jose Montoya. Here's a video:

[LindaJoy]

Thanks, everyone. I'll try to answer all of your questions.

Katie, thank you so much for finding that site for me. I visited it and still have a good many questions. They talk a bit technically there, or maybe I'm just so new to this stuff that it isn't making sense. But, thank you. I'll keep going there. Maybe it will begin to make sense and sink in.

Nunntrio, my pneumonia that was positive was from a Mycoplasma pneumoniae IgG abs. Apparently, the IgM form of this was negative. The IgG was pretty high, at 407 with anything over 320 being positive. Nunntrio, do you know, can this Mycoplasma cause other health problems, too? I am really at a loss when it comes to viruses. I know absolutely nothing about them and I'm finding it hard to understand the information out there. My high brain fog right now isn't helping. I'm having trouble even following Perry Mason.

Hi, Naomi. Thanks for the video. It's funny, I watched a bit of that one just last night on YouTube. I thought maybe someone might talk about HHV-6 on YouTube in terms I could understand, so I went there and found this. And, it's Dr. A Martin Lerner who did my testing who I haven't been able to get any information from on results. It was Chronic Fatigue that he was testing me for. Well, ME.

Yeah, Stanford really believes in Chronic Fatigue as a true disease But, the waiting list to see someone there for it, according to Dr. Montoya, is two or three years! Wow!

Thank you, everyone, for all you've sent to me. If any of you know, can the mycoplasma pneumonia infection cause me other health problems, I'd really like to know. Thanks.

And, what all can I expect that I have this HHV-6 IgG thing, I'd really appreciate it.

Thank you, everyone, again. You're so helpful, and I appreciate it so much.

Linda

Edited April 29, 2012 by corina

[HopeSprings]

Here's his treatment guide:

http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

[LindaJoy]

Thank you, Naomi, for that site. I'd never seen it before. I'm a bit concerned by it, as I match what he's talking about, and I know his suggestion is to put me on an antiviral for a year, which I've heard can be really nasty medications.

I still can't believe, and haven't found any doctor to verify, that my reactions to eating are caused by these viruses, even if I do have them. No where have I found that CFS sufferers have the food reactions that I do, viruses or not.

I just don't know. I tell you what, I get so tired of feeling like I'm chasing air.

Well, back to diving into Perry Mason. It's nice to get lost in someone else's troubles, real or not, sometimes.

Thank you, everyone. If you have any more information to share on this, please feel free.

Linda

[HopeSprings]

I wouldn't think your eating problems are related to viruses either. I understand this is your main problem, but I think I missed what exactly happens when you eat?

[nunntrio]

Linda, I don't really know anything about that type of pneumonia. You can always get retested in about 6 weeks. If the high IGG number you got were just from a passing cold you would think the numbers should decrease 6-8 weeks after the cold clears. Brain Fog is my major symptom and I did test postive both IGG and IGM for Cpn. Antibiotics helped greatly however I am not 100% by any means. My IGM for CPN did eventually turn negative but it took almost 15 month of antibiotics.

[LindaJoy]

Hi, Naomi. When I eat, I have a whole bunch of symptoms happen. Sometimes all of these, sometimes not as many, but I always react to eating with some kind of symptom. Anyway, after I eat, I can have:

--stiff, painful muscles right away, esp. in my legs

--tingling, esp. in feet and legs

--red face and neck, sometimes upper back

--sometimes itching

--sweating

--severe shaking (sometimes with feeling of cold, sometimes not) This is the symptom I hate the most.

--bp fluctuations

--tachy or brady

--arrhythmia

--sometimes diarrhea

--urgency to urinate

--dry heaves

--feeling that something is majorly wrong (duh, right?)

--sometimes headache

--sometimes feet and hands turn blue

--dry eyes

--tinnitus

Now, we're talking all of this hitting at once. I have these symptoms all the time, randomly, but when I eat, they hit all at once and pretty quickly.

Thank you for asking.

Nunntrio: What is CPN? I'm sorry if you've talked about it here before and I missed it. Is it some kind of virus?

Thank you, everyone, for all your information.

Linda

[HopeSprings]

Oh Linda - that's terrible! I remember another woman on here, Lieze who had major problems like this with eating. Does anyone know what happened to her? - been a while since she posted. Linda- have you posted about the eating specifically? If you have, never mind - but if you haven't, maybe you should create a post devoted to this topic so you can get specific answers. It sounds like the mast cell stuff a lot people have.

[LindaJoy]

Hi, Naomi. I don't remember anyone named Lieze. I'd really like to talk with her if she's like me and still here at the site. I wonder what her problem turned out to be, if she found an answer, that is.

Yes, I've posted this issue in detail many times over the years. Mostly the response has been mast cell stuff, which I took to heart and had investigated thoroughly by two top mast cell docs in the US, to no avail.

I appreciate your continued suggestions. This is how people get leads to better their health, so I really thank you all so much for continuing to offer support, encouragement and suggestions!

Lindajoy

[Dizzysillyak]

If I ate lasagna and drank ice tea, I'd have most of those symptoms too. I'm intolerant of gluten, dairy, tomatoes and caffeine. Throw in some soy, and I'd be choking on phlegm. If I followed that with a piece of cake with artificial ingredients, like a twinkie, and I'd be sick for a week. We're not all going to have the same symptoms.

I have ME and have many food intolerances. In fact, most, if not all, CFS specialists ( Cheney, Lapp, Myhill, Klimas) list food intolerances as a common problem for people with ME. IMHO, Dr Myhill has the most comprehensive info about this. BUT ... I like Dr. Terry Wahls diet better.

I have 3 elevated viral titers but no one wanted to treat me for those. FWIW .. I've seen most of my ME symptoms vanish with eliminating the foods I listed so I'm not sure I need antivirals. I think my progress is due to reducing cytokines. There's an article on prohealth about cytokines if you want to google it.

tc ... d

[anna]

Linda I can not remember if we discussed Histamine intolerance! http://www.ajcn.org/content/85/5/1185.full

I too get some of the symptoms you mention when eating some foods I am looking into the whole histamine issue now as it fits better with my families odd reactions than the MCAD does.

The herpes virus, it does seem like most folk have this in their system http://pathmicro.med.sc.edu/virol/herpes.htm seems that some Dr.'s say this is the cause of ME/CFS others do not agree, I think it could be linked, but more that the virus mutates in some people, thus the problem may arise, anyway not sure how significant having the virus is.

[LindaJoy]

Thanks for your responses, Dizzy and Anna.

Anna, I've thought about histamine intolerance. I wonder how you test for that? Can you test for that?

Also, with regards to CFS and ME, I just don't get the exhaustion like those with these conditions get. Is it an every day type of thing? I have bouts of severe fatigue, but that usually comes when my eating is getting bad again and I'm not getting nutrition.

Yeah, Anna, I thought that too, that most people have the herpes virus, so how does getting rid of the antibody help?

Dizzy, I'll look up cytokines. I asked an ME doctor here in the states (can't remember his name--I emailed him.) about food reactions in CFS/ME people, and he said he doesn't see that in patients with this condition. I was confused because I'd heard from people with ME themselves that they have severe reactions to foods and have to learn what they can and cannot eat.

Dizzy, have you ever eaten and instantly felt pain and pressure in your ears, right behind them and down a bit? I get that with some foods. Got it with half a radish the other day. So weird.

Take care and thanks everyone.

Linda

[Dizzysillyak]

I cerainly would not see the cfs dr who said his patients don't have food intolerances. Lol .. What a

waste.

You're very lucky that you don't have the cfs fatigue. I feel tired a lot but I'm sure a large part of it

is my oi. I feel the effects within minutes of being upright.

I'm not reacting to the foods I eat now but it took a lot of sluething to figure these out.

I can't remember which one caused the ear problems you're talking

about but i've had that. My best guess would be anything moldy and possibly fermented.

I get digestive and neuro problems from gluten. Undeniable large dark marks around my eyes if

I eat dairy. These take 7 - 10 days to go away. I get Fibro pain from tomatoes and bacon. I get phlegm in

my throat within minutes of drinking soy milk. I also get phlegm from anything else, esp supplements,

that have soy.

The best article I saw on cytokines and cfs was on prohealth. If you google prohealth cytokines,

I believe it's the first article in the list. It really explains how cytokines affect us and helped me

understand how important it is to eliminate as many as possible.

[Dizzysillyak]

Btw. I had my gall bladder removed too. Then I found out from a celiac freind that her doctor knew

about the celiac disease gall bladder connection and tested her for celiac first. She was positive

for celiac and got to keep her gall bladder.

I just learned the other day that we need the rush of bile that our gall bladders provide when

we eat fats. The liver only trickles out bile and can't keep up if we eat too much fat at one time.

I also just learned via the metametrix digestive test that I need pancreatic enzymes because

I'm not digesting fats. I'm hoping these help my digestion and provides more nutrients.

Based on your signature, I hope you're gluten free. The gluten file contains info on how most of your

ailments can be linked to gluten. There are some really great doctors writing about the dangers

of gluten.

Tc .. D

[anna]

Hi Linda,

I think the test for this seems to be checking urine and or serum for histamine levels, or testing for low levels of Diamine oxidase.

(Diamine oxidase (DAO) is the main enzyme for the metabolism of ingested histamine).

Not sure who is doing these tests, but it could be wise to try listing all the foods that trigger a reaction then see if they link to the histamine containing list of foods.

[LindaJoy]

Hey, Anna. I'm not sure DAO can be checked in the US. Do you know, can it be? I've read a great deal about it, and I think I would benefit from being able to have it tested. Maybe I don't have enough? I know, when I was pregnant, I could eat foods I was truly allergic to. It was great. DAO increases in pregnant women.

Hey, Dizzy. Yes, I'm gluten free. Heck, I'm practically food free most days! It helps, I guess, but it's hard to tell. I also looked at the cytokine article by ProHealth you suggested. You know, the more I read about everything that can go wrong with my body, the more I'm afraid to get out of bed in the mornings. Cytokine storms? Geeze. What next? Scares me. Is there anything you do about it?

Thanks, everyone.

Lindajoy

[anna]

Hi Linda,

I am in the UK I have found a few labs here that tests for low DAO! But I am sure there must be more available in the States I will ask around ok.

I just found this on one UK lab sight and thought it might be of interest;

Blood test and further diagnostics

The histamine intolerance test measures the activity of the DAO contained in the blood, since the DAO circulates through the body in the blood. The blood is mixed with a substance similar to histamine and the degradation of this substance is measured. The larger the quantity of DAO in the blood, the larger is the portion of the substance that is degraded. In the next step - as a basis for therapy - two possible causes of histamine intolerance can be determined by means of further diagnostics. Copper is a central component in the DAO. If not enough copper is present, DAO cannot be produced in sufficient quantities. Vitamin B6 is a co-factor that means that the DAO cannot convert any histamine without this factor. If a reduced DAO activity is found, the determination of vitamin B6 and copper in the serum can be made in a second step.

That was from LSIA lab registered in Canada.

Linda just found something I have PMed it to you ok!