timaca
Frequent Contributor (1K+ posts)
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posted
This is in response to Nessa's post asking about tests for various pathogens.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out. (2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link. Best, Timaca
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.
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.
timaca
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Member # 6911
posted
Glad this info is helpful.
BettyG...I don't know how much the tests cost. You could call Focus Lab and see. Then of course, it depends on what kind of insurance coverage you have. At this point in the year, the insurance is covering much of my costs as we've met our family deductible.
I should also add that antibody testing for enterovirus isn't very good. Dr. Chia, and ID doctor in CA who treats CFS and specializes in enterovirus, prefers to use Arup lab in CA for enterovirus testing (at least I'm pretty sure that is the lab he uses).
Also, if someone has tissue taken from them while ill...uterine, stomach, etc...this tissue can be examined for viruses by IHC staining. Contact me privately if you have such tissue and wish to get tested. This testing is NOT covered by insurance since it is for research purposes. But, it can give you a good idea of what you are sick with.
Best, Timaca
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Keebler
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posted
- TIMACA also posted these Enterovirus links at another thread: ------------
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.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Keebler
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posted
- It's good to first see a LLMD and get assessed for lyme and other tick-borne infections or TBD (tick-borne disease).
You might ask the LLMD at that time, based upon their experience and your symptoms if it might be a good idea to test for HHV-6 or Cpn.
Many lyme patients have multiple infection, in part, because ticks carry other stuff but also because lyme plays havoc with th immune system and can make lyme patients either more susceptible to infection or bring to the surface infections that were dormant.
You can't treat everything at once, but since lyme and Cpn have such similar treatment protocols, it might be good to check that and, if present, be certain that you will cover both with the treatment.
Not all LLMDs are expert at these other chronic stealth infections but HHV-6 and Cpn - and mycoplasma are the most common one.
It might also be by treating some of the more simple ones first (which the ones I just listed are not) that treating lyme may be easier. But, each patient is different. -
[ 03-25-2010, 03:43 PM: Message edited by: Keebler ]
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posted
Is it okay to be on antibiotics while taking some of these tests (especially mycoplasma and chlamydia)?
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Keebler
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posted
- electrolite ,
It would probably be best to ask that of the labs doing the tests and the organizations that provide the education about each particular infection.
Unless specifically detailed at their website, or if they have a doctor / patient information sheet or kit, I would call the lab at two different times and ask this question to be sure you get the same answer twice. -
[ 06-15-2010, 07:13 PM: Message edited by: Keebler ]
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-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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posted
I don't think there is anything to fear about testing positive for viruses. It just means those infections need to be treated as well.
There are a number of antivirals on the market that can be added to your protocol.
It saddens me that LLMDs aren't up to speed on viral infections, and the docs that know about viruses don't pay much attention to TBDs.
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Thanks for this post. My LLMD ordered an EBV panel. Several of the other tests have been run, and I know I do have a long list of viral issues as well as the lyme/ehrlichia.
But, I didn't know where a "reference" lab was. I have sent an email to focus. I hope they accept our insurance.
Thanks, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Keebler
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posted
- This lab just came up on another post today so I thought I'd add this here:
. . . last year, my ILADS-member LL ND had my Cpn tests run at this lab, so for a least this other chronic stealth infection, they seem to be in the top of the class.
For Cpn, the tests my ND ordered were: IgG Abs; IgM Abs; and IgA Abs.
Specialty Lab tests for various chlamydia strains (with Cpn being the top six on list):
posted
We recently had a very comprehensive panel of tests as mentioned above. It was costly, however our insurance company negotiated a reduced cost.
Linda S.
-------------------- Linda Posts: 39 | From Lexington, Virginia | Registered: May 2009
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Keebler
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posted
- XMRV -----
I don't have details as they are unfolding about testing, etc., but just wanted to be sure that was added to the list of things to consider in the diagnostic process.
Interim XMRV Guidelines from National Cancer Institute
(Following the Oct. 8 publication by Lombardi et al in Science linking CFS and xenotropic murine-related retrovirus (XMRV),
the CFIDS Association of America requested guidance from the National Cancer Institute about XMRV for persons diagnosed with CFS, their loved ones and the general public.
The following are interim guidelines excerpted from a letter received from NCI director Dr. John E. Niederhuber.). . . . -
[ 04-15-2010, 06:02 PM: Message edited by: Keebler ]
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djf2005
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posted
see thats the thing im + for cmv and a few others but have been told over and over by dr " " in NY that its just my suppressed immune system and not the viruses causing symptoms....
i know you (timaca) responded very well to anti virals and thats great, but what is really going on for everyone? we are all different. its confusing.
i wish i had the answers. i am on herbs right now anyway which are intended to address viruses, but it does peak my interest when patients like timaca get well on anti virals, etc, whereas they did not on abx....
who else besides timaca has had this presentation?
i will ask AGAIN, at my next appt, and see what kind of response i get.
viruses being active is just a sign of an overwhelmed immune system, is it not? (this is not an inflammatory question, i really have been told this time and again)
and, many "healthy" people would test + for many of these viruses too, so its very complex.
if one or two viruses could cause the havoc that "lyme" is causing for many of us, i guess i would welcome it...
again, as i said about xmrv, i speculate they are all players, w/ lyme.
also, timaca, what kind of weight do you put on igg vs igm results, as my cmv titers were through the roof but supposedly "past" which i know really means nothing...
another thought, the proposed treatments such as anti virals and the hiv tx for xmrv are toxic and create their own issues...
rebuilding the body from the ground up seems the only logical way to approach all of this. i know like most of you, if i knew upon dx, what i know now, things would be very different....
prayers for continued healing..
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
seekhelp
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posted
I personally think a lot of LLMDs default to the 'you'll get rid of viruses on your own' statement to avoid the liability of treating them due to side effects. They don't want to be experts in all. It's easier to stick with TBIs as they already think they put their neck on the line for us. THis may or may not be good thinking.
Derek, this may not be the case with your doc as the LLMD seems to be as aggressive as they come. I mean in general. Family medicine docs just don't have the expertise to feel comfortabl with viral treatment I'd presume.
To the LLMDs I've seen, a test result outside of a TBI was nothing more than words on paper. For the most part, they have their strategy ahead of time and treat the same stuff across the board.
Derek, Timaca has said several times a high enough IgG level(varies by viral infection) can be indicative of a chronic infection. Several highly respected ID docs (yeah they exist) subscribe to this theory.
I think seeing a real ID doc with talent and an open mind is a GREAT thing to do even if concurrent with a LLMD. When I read this board, it seems like tons of LLMDs view things through Lyme-colored glasses. It may seem like sleeping with the enemy, but all opinions should be sought when one struggles horribly with health problems.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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djf2005
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posted
if this has been your experience then i am sorry for you and it may explain some of your frustration but many good llmds tailor tx very very specific to the individual because everyone is so different...
and i tend to agree to some extent on brushing aside the viruses thing, its rather annoying, but again, no one is perfect and has all the answers.
keep seeking seek, youll get there.
best
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I see a "cellular nutritionist" as well as an LLMD. The nutritionist feels a longterm viral issue will keep you down enough that the lyme can't get better. So treating that comes first according to him.
While anecdotal, and could be due to many other reasons, I started feeling better after 7 weeks of treating for medium viral test results. That's after 3 years of varied antibiotic treatment and ruling out most of the items on the suggested list above. We are ordering a new C4a soon and he predicts my high score will be normalizing.
-------------------- * 24 - fibromyalgia and mood disorder * 36 - lyme disease * 40 - still fighting it * Posts: 13 | From Austin, TX | Registered: Jan 2010
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timaca
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posted
Keebler~ Thanks for updating my post. Yes, ARUP is best for enterovirus testing.
I'm headed out the door to catch a plane to see my ID doctor. There are a couple of other tests that I will add to that list when I get back.
Cheers, Timaca
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posted
Great post!! The only problem is that there isn't very good treatment available for most of the viruses. I think in the end there will be one or two, either viruses or bacteria, that cause our immune system to weaken and allow all the other stuff to become active.
I think we will have to figure out what the main cause is and fix it before we ever regain our health back again. I don't think it makes sense to try to treat each bug until you know what the main problem is.
I haven't had much success with just treating Lyme, there is still something else that still needs to be treated too.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
well i've been tested, before i came to this board for ebv, cmv, hhv6, hvs1, cfs, and a host of others, i have these, then was told i have one band of lyme, and that is where i am today.
if i could have a band of lyme, then who knows who here have one or some of the viruses that i have, get check people.......
HHV6....Human Herpesvirus Six (HHV-6) is one of the eight known viruses that are members of the human herpesvirus family. It causes the disease exanthem subitum (Roseola), a near-universal childhood disease.
timaca
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posted
HHV-6 can be treated with valcyte.
Enteroviruses are best addressed with oxymatrine. (a chinese herb)
Both medications have helped me substantially.
Best, Timaca
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BackinStOlaf
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posted
thanks for the post
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
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Keebler
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posted
- (thanks to Kathy B at my state's lyme yahoo board).
Chronic Borreliosis Complex and Neuroendocrine System Disorders
- By Carol Fisch, Adjunct Professor Emeritus, Microbiology, Immunology, Parasitology, Proficient in Stealth Pathogens -
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Keebler
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[ 02-11-2012, 04:32 PM: Message edited by: Keebler ]
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Keebler
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posted
- Also to consider when assessing complicated cases: Porphyria - not an infection but a liver condition that affects heme and the ability to effectively metabolize toxins through the liver's main detoxification pathway. It can cause many varied symptoms.
There are at least eleven types of porphyria. It is genetic - or can also be acquired by infection, chemical exposure, etc. ---
Written testimony of Jamie Deckoff-Jones MD to CFSAC September 17, 2010 -
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Keebler
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posted
- If others have key links for the new information out about XMRV / HGRV, please add. This is an excellent thread for additions to the regular list of diagnostics for tick-borne infections. -
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timaca
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CFS and the Viral Connection by Dr. Komaroff at Harvard is worth taking a look at. There are slides and a video.
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timaca
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Keebler
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posted
- Leptospirosis is a spirochetal infection. It is not (or at least known to be) tick-borne but, still, it should be considered in any diagnostic evaluation.
Leptospirosis has some similarities besides also being a spirochete. It is thought to always have a rash -- but, like lyme, a rash does not always present. It can become persistent and tests are not always as clear cut as desired.
posted
keebler, are you saying that the amount of doxy a typical lyme patient takes wouldnt necessarily kill those spirochetes?
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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Keebler
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posted
- Well, not everyone who thinks they have lyme might. This would be something to consider. And, I posted that not just for lyme patients, but for anyone, everyone. Education is important.
I used to swim in rivers and ponds where livestock were seen from time to time. Who knew? People have pets, hike all over, etc. It's important to know.
And, like lyme, it seems to hide, burrow, etc. My guess is we have much more to learn about this spirochetal infection, too. -------
Persistent human leptospirosis - professional guide
. . . In these sites, bacteria can form strongholds where they are effectively trapped, . . . -
[ 11-08-2010, 11:02 PM: Message edited by: Keebler ]
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Keebler
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posted
- Cryptococcus gattii
This is a potentially serious fungal infection that is showing up in the west coast from B.C., Washington state, Oregon and California -- and perhaps beyond.
It should be considered. -
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Keebler
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posted
- Detail about a new Borrelia Culture Test here:
He deserves all the praise, money and support he can get. (end quote for Timaca). -
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timaca
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posted
Thanks, Keebler. :-)
That website is currently being updated and the new research studies will be explained in further detail.
Marnie has posted this thread - also important to consider for anyone with chronic illness. -
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timaca
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