posted
That's a tough call. I have all three. My EBV and HHV-6 levels will not/have not gone down with over a years' worth of anti-virals. I can't help but think that some of my symptoms are related to the viral infections. My LLMD states that my immune system is completely taxed from the lyme that it can't deal with the EBV or the HHV-6.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
Very interesting....my EBV numbers were high, but stable for about 2 years. As soon as I started treating with anitvirals, the numbers went UP! And, continue to go up.
Anyone have any thoughts on why they would go up only after I started treating them. It's the early antigen titres that are rising, not the IgG or IgM.
Posts: 33 | From VA | Registered: Feb 2009
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What anti-virals have you taken for the EBV & HHV-6?
Just curious, since I have 3 doctors telling me to take 3 different anti-virals (not all at once!)
I haven't taken any of them yet. Trying to figure out some other things and I'm so sick of meds --- can't stand the thought of adding something else, even though this HHV-6 MUST me addressed.
The anti-virals recommended have been:
***Viread - by the ID doc (who's not your typical jerk ID doc)
***Valcyte - by my "main" doc (immunologist)
***Acyclovir - by my neuro-gastro doc (who's been treating me for GI issues and more since '96)
All 3 docs say the same thing about the Lyme destroying my already weakened immune system, and now the viruses have come back out to have a party!
Right now we're trying to figure out this B-12 issue. My levels have always been way high, like in the 2000-3000+ area. We finally did a Spectracell lab test, where they take your blood and check the intra-cellular levels.
Long story short, I'm actually DEFICIENT in B-12 and Pantothenic Acid! Of course, 1 doctor wants me to do 2x/week injections of Cyanocobalamin (but I think I need the Methylcobalamin.)
The other doctor wants me to take Metanx 2x/day, which is in oral form. Apparently, it's already broken down to reach to intra-cellular levels so you don't have to do the injections. I asked the pharmacist what she knew about Metanx, and she suggested I take it, instead of the shots.
She thinks it gives a better delivery in reaching the intra-cellular level, easier to take, and you get the exact same dosage every day. She says she has 3 other customers who are prescribed Metanx and they've had great results.
Anyway, I've gotten way off track here. Any comments on any of my ramblings are appreciated.
Eric, I don't know what to tell you. I've got the mixed up soup with all the nasty ingredients as well, and I'm at a loss! I wish I had some advice for you ------ right now, I don't know up from down!
All I can say is to keep searching! Good luck!!!
Take care, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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Rocephin / Zithromax / Supps Posts: 107 | From Plainview, New York | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
It's natural to want to pick this all apart but when you have a combination of infections, you have to have a comprehensive approach because any and every infection will cause fatigue and flu-like symptoms. It can be nearly impossible to dissect to what degree symptoms are caused by which agent.
Also looking back over life-sytle choices, there may still be some things that, if eliminated- or added - could offer help.
Advice? Comprehensive treatment for infections. And support measures for adrenals.
Are you being treated for lyme by a LLMD?
Are you being treated for the viral infections, too?
If you are not getting the treatment you need, can you? Are you asking how to treat or how to obtain treatment?
Are you on some sort of treatment path?
Are you getting support for adrenals such as outlined in Singleton's book?
---------------
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
posted
The problem is that most LLMD's do not treat viruses. At least mine doesn't
Posts: 103 | From New Jersey | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Eric,
Which ever doctor did your all your tests - will that doctor also treat you for everything?
This all can take time - many months in some cases - to get energy back.
---
Here's a great thread from TIMACA - she lists some organizations such as for HHV and Cpn. THOSE sites may offer more answers for those needing to find a doctor who will treat chronic stealth infections outside of the range of those which are tick-borne.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . . (see below).
. . .
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
posted
Oh and an individual lab LABCORP as requested by my chiro, did the first tests,
then my LLMD did a few more through MDL...
He said to treat the Lyme on which even that he feels to be a past exposure and Not too significant,
and not worry about the Viruses,
as they are basically there to stay and untreatable,
But Timaca here seems to feel otherwise since its only one Band of Lyme 23 present (but I do have a low CD57 count of 44).
?????
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Eric, my CD-57 was 40. I had mono 2 years ago after which I was never the same. I had an Igenex positive WB. However, lyme treatment has not budged my condition. I am not a particularly susceptible HLA type. My LLMD is even skeptical now that lyme is my main issue. So what gives? Well, it may be hormonal. I was established hypothyroid before the infections hit. Perhaps the stress may have destabilized my thyroid levels. I can't be sure what the mechanism is. I do know that many of my "lyme" symptoms could easily be seen as hypothyroid symptoms. How is this possible with "okay" looking thyroid labs? The answer may be RT3 (reverse T3) for me. A high reverse T3 can block the active hormone, T3, from doing it's job. In short, consider hormone components to your illness as well.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Please explain this process of Hormone components ?
Where to get them and How do I take them ?
Thank You.
Best Regards, Eric
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
And may I add to the list of things to test for: enteroviruses. Using Arup lab. The enterovirus website is not quite operational yet, but it will have loads of info on it soon.
A friend of mine is now 95% well after being sick for several years (very sick). She has been on antibiotics for lyme/coxiella, valcyte for high EBV and HHV-6. She saw improvements from both treatments. She is now almost well by treating the enterovirus with oxymatrine. She had multiple pathogens making her ill.
My story is similar to hers, except I have chlamydia pneumonia and not coxiella. I do have enterovirus and will be starting oxymatrine shortly. (I also had VZV, HHV-6, EBV and HSV1)
As much as you can, treat what is obvious. Then if not well, do some more digging.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Eric, I'm just saying that lyme and/or co-infections can contribute to hormone problems.
Did your doc check your thyroid and adrenal hormones as well as sex hormone levels and IGF-1 levels? You may want to run some tests and see what they look like.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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should i ask him to, or rather insist on these ???
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Absolutely. Thyroid and/or adrenal symptoms can be very similar to lyme and/co's at times especially in terms of overall fatigue and energy. Thyroid problems can also cause muscle twitching. Run the tests. At the very least, they will help you rule other complications out.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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I will surely ask for all this when Im there next time in two weks, I just hope he does not brush me off since he takes insurance and kinda follows their guidelines...
and as before he said not to worry about HHV6 and EBV, even though now Im starting to wonder if I should just simply rely on one man's judgement with my life.
Best regards, Eric
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
Is it true that your titers to HHV-6, EBV and CMV can vary (or "jump around") with each blood test you do? (Mainly the HHV-6 ---- which I'm sensing that they're the most concerned with.)
I'm sure they can, just like a Western Blot can come out differently if you took a tube of blood everyday ---- it would show a different result. How do you monitor it, if that's the case?
If you take an anti-viral (which I STILL haven't started yet), how do you know if it's actually helping you improve?
I have 3 different doctors wanting me to take "their" version of the best anti-viral for the HHV-6. I haven't started any of them.
One is Viread (EXTREMELY expensive), the other is Acyclovir, the other is Valcyte. I'm so confused and don't know what to do.
They all have different theories about everything, but I trust all of them as well. I'm waiting on my intrinsic factor lab to come back. I can't wait to see what that reveals or doesn't reveal!
I haven't started the B-12 deficiency treatment either, because they want me to do my 10 hours of neuro-cognitive testing BEFORE adding the B-12 and Pantothenate treatment. That way, we get a "true" baseline of my mush brain, I guess!
My 1st round of testing is on Feb. 26th, for about 3 hours. Anyway, I've gotten way off track again.........imagine that!!!!
What do y'all think about my HHV-6 question?
Thanks for any input, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
terriboys~ There can be some variation in titers to HHV-6 and EBV. A consistently high titer may indicate active, chronic infection. A consistently low titer indicates no infection. My titers have steadily decreased with antiviral treatment.
A variation in one dilution (from 1:320 to 1:640) doesn't really mean anything...but if a titer goes from 1:640 down to 1:80, that is significant.
I know I have improved with antiviral treatment because (1) I feel better healthwise and (2) my antibody titers have decreased significantly.
I used valcyte to lower my HHV-6 titers (and I found significant improvement from valcyte). I'm on acyclovir now to keep the titers down.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thanks, Timaca! I'm still trying to figure out this HHV-6, EBV, CMV, etc. combo.
I'm waiting on lab results to get back on lots of things. I really appreciate you sharing your experiences with both drugs ----- and the significance of the variations in the titers.
Did you have many side effects from either drug? (Like the rest of our sx and tx and dx's aren't enough!!!) LOL!
Just curious...........
Thanks again, and take care of yourself. I'm glad you've improved!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Within one hour of starting the valcyte I felt like a truck hit me. Then I had a significant herx before the 2 weeks was up.
I got very ill the next day after starting acyclovir. I was quite ill for a couple of weeks, then had a miserable month. After that, slow and steady improvement.
I start oxymatrine (for enterovirus) last night. Within an hour I was quite sick. Today...not doing well. That is to be expected.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Timaca, if you don't mind me asking where did you purchase oxymatrine? Can oxymatrine be purchased over the counter or do you have to get it through a doctor?
Best regards, Emla
Posts: 1223 | From U.S.A | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
The doctor that prescribed my oxymatrine, wanted me to get it from China, as he felt most comfortable with the quality of that formulation. He provided the necessary paperwork for that to happen.
It is available online in the US. I think White Tiger manufactures it.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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not sure what symptomps are viral or what is lyme...
but chronic fatigue, always tired, lack of energy to do anything, lack of desire, no interest in my hobbies, depression, cry easily, light cold / flu like symptomps, and at times i get a lip sore, like a cold sore... once or twice per year.
also floaters in my eyes when loooking at bright white things.
oh and the darn ringing in my ears.
and neck stiffness, with crackling sounds but probably due to my 3 herniated discs in my upper neck...
???
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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