posted
My llmd told me I have very high titers for Epstein barr, which I believe is Mono, correct? what do you take for this? might explain why I feel so tired all the time.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
she said to take Transfer Factor. She also said I do not have lyme, "I have been exposed but only one band showed up" so she is not diagnosing lyme.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
It would be helpful to know which band showed positive.
There is a book out by Kasia Kines, "The Epstein Barr Solution." I may read it myself when I'm done with my current M. pneumonia protocol because I had high levels of EBV on a previous test.
Posts: 705 | From WA state | Registered: Jul 2011
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posted
Band 31 and 41 I believe.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Lyme does go hand in hand with EBV and with all herpes family viruses (and other viruses).
Virtually everyone having lyme will be fighting viruses on and off, like candida.
The problem with these chronic viral infections such as EBV is that:
- they are hard to diagnose (like with lyme)- just visit EBV forums, and you'll see they mimic everything you people with lyme think belongs ONLY to lyme.
- most doctors do not believe in chronic mono or chronic herpes infections, that they could cause so many symptoms.
They only believe in acute active infections (like with lyme)
- the treatment is basically antiviral drugs but they are not very efficient for chronic infections (like drugs with chronic lyme aren't)
- when drugs don't work or when your blood values come clean, you may get a diagnosis of post-viral syndrome, which means, you no longer have active viruses, but you only have the symptoms. For life, sometimes. (Like with lyme).
Of course, this is a false diagnostic as we all know that infections can turn chronic and cause symptoms.
Yes, they do call that post-viral syndrome, as they used to call us post-lyme syndrome!!
- CFS is linked to viral infections MORE than with lyme, when you google it.
So in my opinion, again, treat your whole body instead of treating EITHER lyme OR EBV/ chronic herpes OR chronic viral OR chronic candida infections.
The only one that can heal from this mess is your own immune system, meaning, a healthy body.
Drugs attack only a tiny part of one problem (ex anti viral), while they let the rest proliferate (like bacteria), without control.
Many herbs attack different things at once, or stuff like garlic even. Or propolis.
Who was saying lyme is not anymore only tick born, but a multi factorial infectious syndrome, some years ago already?
Well, the guy was right, it seems.
Once you fall in that multi-microbial spiral soup down, well, the only way to climb up again is rebuilding the whole immune system back again.
To achieve that, I only see one way: optimized nutrition, high amount of antioxidants many times a day, constant toxin removal, and natural treatments only (because they do not destroy your microbiome, THE main gun against multi-infections).
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
thank you so much for this information, however, my llmd is treating my ebv with transfer factor immune support. that is it. she said I do not have active lyme disease. I am so confused because I feel so sick yet no one has told me what I have. I also tested for mycoplasma pneumonie among other viruses.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I have another question: my llmd told me to start out slow taking the transfer factor because I will probably herx. Why would I herx from a supplement if in fact, I do not have lyme? I am very confused about all of this. What is the transfer factor suppose to do, help my immune system?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I wake up every single morning for two years full of sweat. it is so gross, I feel dirty all the time and cannot understand why I get up like this? if this from Epstein barr?
Posts: 468 | From boston, ma | Registered: Feb 2018
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Some people here will say babesia (which is possible), but some herpes viruses also do that. Not only EBV but cytomegalovirus too, HHV 6 is also linked to sweats.
Positive: If two or more of the following bands are present: 23, 31, 34, 39, 41 and 93 kDa.
The CDC criteria are also present but they are of lesser credibility.
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
The doubt 'lyme or not lyme' is in lymenet since I first started visiting it, in 2005, when I thought I had lyme (and I did).
People doubt because of dubious or insensitive exams, because they got no tick bite, because symptoms don't exactly match lyme (or match other diseases too), because anti bacterial treatment after years and years does not work etc.
Many move from a sort of active lyme to becoming fully autoimmune, and when that happens, many other disease names pop out: MCAD, CFS, multiple chemical sensitivity, MS, EHS, RA, lupus, all sorts of neuro, joint, skin diseases, brain diseases, gut diseases etc.
I think the concern is very real. What exactly do we have? In a lyme forum, the answer will be lyme disease.
In an EBV forum, it will be EBV or any other herpes viruses (cytomegalovirus, HHV6, zoster etc).
In an autoimmune forum, it will be an autoimmune disease, mitochondrial disorders, RA, lupus, MCAD, Multiple chemical sensitivity, whatever....
In an MTHFR forum, it will be an MTHFR mutation.
In an EHS forum, it will be some radiation, wifi, etc.
And so on.
People are looking for answers, specially the ones that treated bacterial diseases for years, if not DECADES and are still ill.
I think it's pertinent to consider that maybe, the problem is not exactly lyme at the center, as there are other immuno-suppressive bugs causing chronic diseases, specially viruses.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If one has lyme - and NEVER receives proper treatment one cannot simply assume lyme can't possibly be the trouble just because years have passed and there are other issues as well.
Most often, the other issues can be CAUSED by the presence of lyme or other tick-borne infections . . . and, yes, some chronic stealth infections that are not tick-borne.
However, when lyme itself has either been totally ignored or terribly under-treated by attempts that have been overly simplified due to
some doctor(s) who just do not understand the complexity of lyme, the complexity of treatment with multiple aspects and are quick to dismiss lyme
or the influence of other tick-borne infections that must be treated differently in carefully considered multi-tiered approaches . . .
When things get too complex, it is very common for patients and many inadequate doctors to just give up and believe, "oh, it just can't be lyme" when, it most certainly can be.
Other elements, other infections that are not necessary tick-borne are along the ride and those need some attention of course, as does good self care,
but one cannot simply continue to ignore the presence of lyme if it's never been thoroughly addressed, no matter how complex a task - or how long - that might require.
There are various ways to address lyme and many people do simply have to do the best they can with resources available but ignoring lyme - and its various stages, forms, cycles - is not a good plan.
linda,
in various posts over time, you've written many things that have had not just myself but also other posters wonder if your "llmd" is really up to the task.
To me, a real LLMD is one that is more advanced than what your posts indicate about the doctor you currently see. She is going strictly by CDC definition of lyme - and that is not at all adequate.
And if a real LLMD is not an option, that does not make most of what your current doctor is telling you about lyme correct. Even if this doctor helped your daughter through lyme years ago, something has changed. You require a better doctor or to think outside of her opinion.
There are ways to address, at least as one best can, but they must be specific to lyme.
Now, as for the topic of this thread,
Yes, indeed, EBV is something important to address and when that happens, you might feel a lot better. But as most regular doctors do nothing, that is not an option with EBV, either.
While I disagree with your current (not a real llmd) doctor about her dismissal of lyme, some people have been helped with her suggestion of Transfer Factor.
But that's not enough of a plan and you'll need to research on your own to determine if it might be helpful for your body.
lymenotlite's suggestion seems a good place to start, ASAP:
Brilliant way to put this - excerpt from Table of Contents:
. . . Introduction
A Final Note: Your Body Has Been Fighting For You, not against you. p. 18
Still, be sure to read all the reader reviews to get a fuller picture of if / how this book might be helpful for you - and also the pros & cons to consider as you check out other resources.
If you could get a LL ND (naturopathic doctor) that would be best as they have the kind of training for herbal approaches and would have the lyme background, too. And they can adapt the plan to your specific needs at this point in time.
Going at this alone it's hard to know just how much to do and when to temper the action plan to your body's needs.
Also check out Stephen H. Buhner's books on antiviral approaches. His work it top notch. -
[ 05-17-2019, 01:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements. -
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