Topic: Has anyone tested positive for any exotic viruses?
Haley
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To my knowledge I don't have any of these. I am wondering if the top LLMDs test for things like Powassan or Flavivirus. Which lab is best for these types of tests.
Also, if these come back positive, what do health practitioners recommend since there is no treatment for viruses?
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Keebler
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- I was diagnosed with Hantavirus, stemming from the idea of a LLMD - I would have never thought about that. He didn't just run a bunch of tests first -- he knew in the first appointment by my history / symptoms and the test later confirmed his hunch.
So much starts with our reporting and then their brain, wisdom & instinct.
I know many LLMDs are fully aware of those you mentioned (Powassan, especially since it's tick borne & Flavivirus which is West Nile), and more.
Many LLMDs would assess a wide range of possibilities if a person's symptoms & history suggested such.
If you think you have symptoms for any particular virus, bring it up with your LLMD.
If you don't know about seeing a particular LLMD, ask as the area lyme support groups to get an idea of how comprehensive the assessment / diagnositic process is, in the experiences of group members, anyway.
You can also call a particular LLMD's office manager and ask if they are familiar with a particular virus. Obviously, some may be more far reaching than others who may want to stick with the basics.
The support groups are a great source for information as to different LLMDs' styles. Just never go with the opinion of just one person. Talk to lots of people - read what you can that the doctor may have published - and just talk to them or their office manager -- to get a full picture.
There are some treatments for viruses, a few Rx such as what's used for the herpes family (Valtrex, etc.) . . . and many more herbal options, such as garlic / allicin, andrographis, etc. (naturopathic doctors would have that kind of education & know the specifics involved).
In the case of someone with lyme, a LL ND would be best so they'd also know all about lyme and other tick borne infections.
There ARE treatments for viruses. But the sad reality is that many MDs are unaware of that and most would not be allowed in a hospital setting because they are not pharmaceuticals but herbal based.
IV garlic would be an excellent option. And it's been used in China, very successfully at times. Some NDs have used it here, too. But a hospital would likely never allow it. It's what I'd want if I were ever told I had a life threatening virus that cause brain swelling, etc.
Instead, they shove acetaminophen down the patient (not to treat the virus but to just manage symptoms) and that's one of the worst things they can do as it blocks glutathione in all the body's cells, keeps them from being able to move out the infection's toxins and then the patient can get much worse, and with liver damage, too.
There are many NDs in your state and a few LL NDs. You might want to get to know who they are in case you ever need one. And the LLMDs in your state will likely know them, too and be familiar with a wider range of options than a regular MD. -
[ 07-05-2014, 02:44 AM: Message edited by: Keebler ]
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Keebler
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- As for treatments for viruses, Colloidal Silver and Rife Machines are also strong contenders to consider.
There is always some way to address any infection, IMO. But you have to find the doctors who can think that way, who are educated in that respect. -
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Keebler
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- Various other infections are discussed here. Be sure to see Timaca's thread.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
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Keebler
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I had positive IgG for West Nile and St. Louis Encephalitis, but these were never further addressed by mainstream or my LLMD, either by chasing down convalescent titers etc to try and determine the timing of exposure, trying to determine if there was actually another flavivirus at play... and certainly no one ever spoke about treatment...
Haley
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Thank you keebler - you are a wealth of information as always. I wish I could speak with you.
I was bitten by a deer tick (ixodes scapularis), I didn't know what it was at the time and was diagnosed 2 years later. The doctor that spoke on TBIs at a wilderness medicine conference made a comment - of all the ticks you definitely don't want to bitten by "this one" which was a picture of the tick that had bitten me.
I have recently done some research on this tick and realize that they carry these crazy viruses (maybe all ticks do, I don't know).
I am going to check out all of your links, I do have Buhner's book about antibiotics but not antivirals, will check that out. I have been juicing ginger and take it every 2 hours.
I mostly appreciate your encouragement about treating viruses, that it is possible. I was just beginning to have a "zen" attitude about my Lyme after many years. When I realized I may have a virus, I felt very hopeless.
My CD57 keeps going down and all of sudden my WBC is way low. I think this may be the reason why.
I will also look into IV Garlic. I have a port, so if I can find someone I may give that a try. My doctor will often help me out if I'm really nice to him Posts: 2232 | From USA | Registered: Aug 2009
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Haley
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SickSci - what are your symptoms? Have you tried anything to treat it?
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Keebler
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- Haley,
I don't have energy to reply to all points in your note as I'd like but just a couple of things:
Ginger "juice" can be very hot and burn tender mouth and GI tissue. Be careful with that. It can also be very stimulating. So if you feel overstimulated, back off . . . or at least not too late in the day.
Best with substantial food or veggies to "carry it"
If you want more ginger for your inner ear or circulation, capsules can be the way to go to work up to a therapeutic dose.
-- Many with West Nile do just fine with zero treatment. Many have had it and didn't even know.
Your doctors also may have treated it an you not known if treatment was comprehensive . . . I assume you are also doing liver support and that often can include things that have some antiviral aspects but most certainly would be anti-inflammatory and that's really a key point with attention to any virus.
As for talking to me, really, well, thanks but I just don't have the kind of knowledge that goes much beyond a few posts. I have no energy beyond just tossing tidbits here and there.
A LL ND would be best to get to know. Glad you have Buhner's books but it's best to not have to figure this out on your own.
I just know that it's a myth that there is no treatment for viruses.
And every time I hear about someone in hospital for serious virus and yet another uneducated TV reporter (or even a TV doctor) says that, I just want to scream - and then scream again when they say they are give acetaminophen and will just wait and see. Sometimes, that does not succeed.
But those are isolated cases, usually not for someone with lyme who already has a LLMD who has considered it, in your case. If you are not seeing the kind of progress that is reasonable to expect at this point in time, you might consider switching doctors . . .
and be sure all the bases are covered with diet, adrenal / liver support, heavy metals, etc. -
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Keebler
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- Oh, I also wouldn't just make the jump to IV garlic / allicin. It's not correct for every person.
I think MDs would not be able to administer that, only a ND. And there may be better options now, too, that a good LL ND would know. First, though, they would reassess the full picture, then consider all options. -
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Haley
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Thanks Keebler. I found a doctor on that website that I may look into. The site does say Lyme is one of her specialties, but who knows. There is a Lyme ND where I live, just don't think she's helpful.
I'll go slow with the ginger.
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Keebler
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- Ooooh, a doctor on a website? What website? Can you post the link so we can see what site you refer to?
Some who advertise that they "treat lyme" really do not.
Also run the name past those in your area lyme support groups.
I'm also glad to hear that you won't rush to just any ND who works with lyme. Sorry, though, but do check to see if there may be others with a stronger suit. -
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Keebler
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- While I think the exercise part of this can be misinterpreted, taken to "gung-ho" limits and then could be dangerous for many (take that slow if it clobbers you. Consistency is good yet avoid aerobics. Adrenal and mitochondria support is vital if you are one of many with exercise intolerance -- if so Qi Gong, Tai Chi or Pilates may be a better fit).
Other than that caution that I wish had been in that chapter, the 16 points presented in this book are excellent considerations.
And . . . yet, do not underestimate lyme, itself. While it's good to consider other variables, be sure to have patience when treating even "just" the lyme part of all this. I hope you can find a LL doctor who will have the knowledge and skill you need.
I thought about that one too - "why can't I get better", I'm fairly certain that Dr. H. tests for these, don't really want to fly to NY.
At this point I just want to find someone that will test for it. My doctor may do it.
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Keebler
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- Well, that's a good site to find a certified ND in Calif. I don't see any particular pages on individual NDs there right now but I have to stop now. I'll look again at that later.
Glad you just posted your local group for input.
Also ask at the resource pages here for an ILADS educated LL ND -- or to find a different LLMD who may be better suited to the complexities of your case:
they are based in N. Cal. -
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Haley
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I did post her website in case you want to check it out.
Thanks - Keebler
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Keebler
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- Oh, my eyes totally missed that whole section. Ummmph! Thanks for pointing that out again. -
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Keebler
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- I see nothing there that states she has gone through the ILADS Physician Training program or even one word about lyme. Maybe I missed that?
I looked at all the menu links - my eyes saw no mention of lyme or other chronic stealth infections. (While likely it's excellent for what they do) I see nothing that would lead me to there.
Maybe it's my eyes . . . you say you saw something that said lyme is one of her specialties and I've searched 3 x and can't find it. I think it's my eyes.
Just be sure she has gone through ILADS training and beyond, keeps up with ILADS research, etc. -
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Haley
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Just said Lyme disease among many other things. Will talk to her and see how I feel Posts: 2232 | From USA | Registered: Aug 2009
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Keebler
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- Oh, well my eyes feel better about that. She may be but may not want to advertise it on her website . . . . Do ask about the ILADS training or where else she's gathered knowledge about lyme & co. About biofilm, cyst form, etc.
Now, I'm not saying she has to treat like an ILADS doctor, just know all she can about the science of it all and their research is invaluable, regardless of where else one might take that. . .
but still keeping in mind the science of how lyme & co. all work, or don't -- and the unique aspects for a person with lyme / TBD.
Other avenues below, too. I hope you get other replies from those near you so you know what your next step might be.
Good luck. -
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Keebler
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What are your symptoms that are leading to this line of thhinking?
I've had pretty classic viral encephalitis symptoms a couple times over the past 5 years or so, and a lot of occupational exposure.
Twice I had fever >104*F for several days with excruciating headaches, especially 'positional' which was relieved by hyperventilating to actively bring down intracranial pressure.
My MRI showed mildly dilated ventricles - more evidence of past encephalitis - but the doctors didn't address this, and would not grant me an LP despite months of asking for one.
During this past year's "acute on chronic" mystery/lyme/TBD illness, symptoms started with upper respiratory/flu like symptoms and then the initial encephalitic/neuroinflammatory symptoms were a bit more subtle: an IMMEDIATE personality change tending toward rage/agitation/aggression, then insomnia and progressive paranoia/hypomania, etc
I was focussed on the more traditional TBD symptoms: flu-like illness, fatigue, partial seizures, cardiac arrhythmia, pain etc but it was a breakthrough for me to understand the neuropsychiatric/emotional sequallae of encephalitis from any etiology.
Treatment: I've been on Acs 200 silver spray and Allicin, both considered "immune boosters" or antimicrobial (including viruses) depending on who you talk to.
Conventional wisdom is that the flaviviridae don't recrudesce (lie dormant and pop back up) like the herpesviruses and retroviruses...
But there are plenty of examples of viruses that set a patient up for chronic inflammatory conditions. (ie Canine Adenovirus leading to chronic 'sterile' hepatitis)
We could easily have the same paradigm in people with viral encephalitis who are "fine" afterwards.... but they develop severe depression, insomnia, brain fog / cognitive deficits. They're treated with prozac, ambien, and told they're just getting older and dumber, when maybe they really have mild neuroinflammation and/or occult infections.
(sorry if I got a bit off-topic there. I'm a little dazed myself this afternoon).
Keebler
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- SickSci,
Not at all off topic: inflammation. It's very much on topic for anyone with lyme, etc.
and possible other hidden, stealth infections, too, very much in the scope for anyone with lyme.
I'll just address a few thoughts I have about Inflammation:
In fact, one major factor with recovery with some viruses that can land folks in hospital is the inflammation from the CYTOKINE CASCADE. I'm not sure if all, so I'll have to just say "most" infections can cause a cytokine cascade. Even the regular flu does this.
But the danger I see with modern medicine is that
1. they assume there is no way to treat a virus (and they never really consider if anything of a bacterial nature could be co-exiting) . . .
2. they don't know what to do about inflammation other than throw acetaminophen at it -- and that can be a disaster, even fatal. It traps toxins inside cells and can make the matter much worse for some (not all, of course, but certainly for a substantial number - and it's always a risk).
3. The liver connection is a huge one. With acetaminophen, the liver cannot do its job properly, even just one dose can block all the body's cells from letting the liver make and deliver glutathione
[and porphyria is highly overlooked, even if not porphyria the harsh effect of high porphyrin levels from infection when the liver can't do its work.]
4. and glutathione IVs can do wonder for many in such positions. Most regular doctors don't know this. Many LL doctors do.
5. IV Magnesium for in hospital serious infections could be excellent, too. Again, off their radar.
Many LL doctors know all about magnesium's essential help with inflammation. It need not be IV, unless an emergency, though . . . or to get levels up from the basement and then use easier methods.
6. Other factors with inflammation might not send someone to death's door - until there is another emergency that might land them in the ICU. Then, if on-going dragging but not knock out factors are not considered, inflammation can win and the patient loose (even their life).
These other factors can include diet (undiagnosed gluten issues or errors and some got through) . . . dairy . . . soy . . . food additives . . .
Gluten & Dairy can be major inflammation triggers. Major.
personal care products and the cleaning items used in hospital. So many chemicals and scents that could send anyone's immune system haywire, and all that anti-bacterial lotion / gel stuff is not good, IMO, beyond a very limited use - not flowing like a river from everywhere.
The patient is not served organic foods that are nourishing. If a feeding tube is in, it sure is not loaded with real nutrients but usually a sugar rich formula that can make candida go wild.
7. Candida is often over looked.
I speak so much about hospitals as in the extreme of some viral infections. I know that is not the case with you but everyone needs to consider all this and the things that come to mind with the hospital cases are still valuable to consider for those who just manage to trudge along at home.
There are more aspects to inflammation, I know I've just scratched the surface.
Many LLMD and most LL NDs will have a full range of options to address inflammation and cytokine cascade issues.
And . . . some are learning more about the unique aspects of how lyme "flips" the immune system parts, Th1 & Th2, totally opposite of what one who is not LL might think.
Low dose naltrexone has helped some tremendously with that part. But LDN is not well tolerated by everyone, but they know fairly soon into it if it won't work for them. -
[ 07-05-2014, 04:30 PM: Message edited by: Keebler ]
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Keebler
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- Rhetorical, you don't have to answer, I don't want to put you on the spot (just consider):
Are you gluten free? Dairy Free? Soy Free? Additive free? Considered trial avoidances of corn, eggs, chicken . . . just to think about as those can catch up some folks and "allergy" tests won't show all we need to know.
Scent free? Petroleum not in personal care products?
Environment mold levels "okay"? -
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Keebler
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- The Cytokine Storm or Cytokine Cascade
Many LL authors and researchers have discussed this. I just noticed today that Buhner's Antiviral book has a whole section on Cytokine Cascade or Cytokine Storm. He talks about Cordyceps there as support.
The herb, STINGING NETTLE may serve to compensate for the reaction by calming the the cytokine storm that is often part of the body trying to mount defense against infection -- and also with a herx reaction.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
GMO foods that destroy the GI Tract; Gluten; Dairy.
I hope you can watch the documentary "Genetic Roulette" -- it is so important to see the film not just read about it. -
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Haley
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Thanks for the links Keebler - will check them out a bit later.
Sicksci - In answer to your question, I feel permanently stupid, feel like I'm floating and other cognitive issues. many of my symptoms have been helped with meds and natural stuff but this one doesn't go away.
My big concern now is that I have an infection that will not go away (won't go into details), my WBC is way low, my bf is a doctor and says that it is very concerning.
So, I just had this light bulb moment where I looked up the tick that bit me and realized, maybe I have some crazy virus and that's why my immune system is not getting back on line. I have never addressed viruses. I have been tested for some of the basic ones, but never the ones that may be in ticks.
I have a very clean diet and take good supplements.
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Keebler
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- Were you assessed for the various forms of Ehrlichia? That can cause a low WBC.
Still, your current LLMD should be able to explore, that, too, know which other basic tests need to be done just for anyone with a low WBC - w/or when to recheck in case it was just a one time blip on the screen.
Your regular GP should be able to help with this, too, to do the basic screenings, anyway. -
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Keebler
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- Are you getting enough wild salmon, oranges, turkey? These are just some foods that can help WBC. A full web search will take you beyond but here's a start:
. . . Salmon is one of the best foods to increase your white blood cell levels. Dr. Bill Sears, pediatrician and professor of pediatrics at the University of California at Irvine explains on his website that the omega--3 fatty acids found in salmon increase white blood cell counts and enhance their strength, . . .
15 Foods -
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GretaM
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Well, I tested positive for CMV and EBV after my last tick bite and/or the gazillion sand flea bites.
Prior to that, those tests were negative.
I also feel that the sand fleas gave me other viruses-but cannot afford further tests.
Also had a clinical dx for HHV6 based on crimson crescents.
The problem with viruses-is I don't know how they treat them.
Unless HHV, then valtrex etc.
Great idea for a thread.
Hantavirus...whoah Keebler! Scary!
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Keebler
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- Hantavirus likely obtained from the debris left when a village of mice were shooed off from all the carpet scraps in the garage of a house that had been vacant for about a year before moving in. Who knew? Not then.
Mice liquids & solids are not good to be around but when shaking out large carpet scraps left by others, it's hard to know what has been in there first (glad no snakes!).
Just to alert others about this sort of thing. Don't create a nest for mice - and don't pick up after others who did. -
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D Bergy
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What are the symptoms of hantavirus?
Thank you.
Dan
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Keebler
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- Wiki is a good place to begin for the basics on that. I've sure there are more specific sites that, really, for prevention / early assessment everyone should know who has any likelihood of being around mouse urine or droppings. Most homeowners will have many such opportunities, no likely. Those cute little guys just have a way of hunkering down in hide-outs.
That was decades ago, in my case. Looking up symptoms recently as I recalled this, they are very strong (and I certainly do recall several such very harsh periods exactly as they describe but I just weathered sometimes,
other times was told that the fever would pass, whatever it was, or even that I must be "depressed" to take so long to feel better from what was "likely just an ordinary bug" -
So, by then, I'd learn to just not go to the doctor, even if I thought I was dying because I'd not be taken seriously.
- I likely had lyme for years before that -- and it would be decades before that would be diagnosed) . . . but I have to also wonder if there may be varying degrees or a chronic nature.
But - I am certain that if we go asking any regular doctor if it might become chronic, we'd be laughed and insulted out of their office.
Years later, the LL doctor (though not an ILADS LLMD) I had been to was certain, however, and the testing was positive though I don't recall how that was done but he seemed to say, it'd "been with" me for a long time.
The diagnosis was made many years after I lived in that house where the mouse had been the first tenants. Again, most "regular" punch the time card docs would not be concerned and really don't think much of viruses, anyway since they mostly still think there is nothing that can be done.
Still, most of use have had various viral exposures so it just makes sense to include a good full "spectrum" anti-viral approach along the way.
But, for sudden onset, this can be very serious (even fatal to some) . . . so it's good to know the symptoms - and prevention tactics (including understanding how dangerous acetaminophen can be, too). -
[ 07-09-2014, 01:13 PM: Message edited by: Keebler ]
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Keebler
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- Dan, since I know you have a rife, that crosses my mind just in case you wonder for someone you know, or even just for acquiring basis knowledge.
To my surprise, looking up Rife frequencies in the CAFL -- I seen none for Hantavirus for any spelling (but maybe it has another name?).
However, there may be some that have been "found" since that was devised or I printed it out for myself. Char Boehm might also know with her work in this area.
While curious, there is far too much noise around here with lawn and road crews everywhere for me to concentrate any further.
There are some hits, not sure how reliable, but see what you can find with an Advanced Google search. This is the combination I used and see some:
Hantavirus "Rife frequencies" -
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Keebler
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