LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter



Tax deductible

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.
In the United States, your donations are tax deductible.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Tests to consider

 - UBBFriend: Email this page to someone!    
Author Topic: Tests to consider
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Focus Diagnostics Lab:

http://www.focusdx.com/focus/1-reference_laboratory/index.asp

40540 HHV-6
2420 EBV Panel
40543 HHV-7
41380 Parvovirus
41025 VZV
2385 CMV
40525 HSV 1/2 ELISA
2075 Enterovirus Panel
40735 Mycoplasma Pnumonia
23000 Chlamydia Serologies

40795 Q Fever
40205 Brucella
40881 Bartonella
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 and
SUNY Stonybrook: http://www.path.sunysb.edu/labs/ticklab/TICKLAB.htm

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.

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=26

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=134

For info on
Lyme disease: www.ILADS.org; www.lymediseaseassociation.org
HHV-6 and EBV: www.hhv-6foundation.org
Chlamydia Pneumonia: www.cpnhelp.org

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 5 posted            Edit/Delete Post   Reply With Quote 
hi timaca!


with the tests you recommended, how much do they cost $$ .... lump sum or per test?


could you show that too in your top post by editing to add this info.


thanks for taking the time to list this. [group hug]

IP: Logged | Report this post to a Moderator
DakotasMom01
LymeNet Contributor
Member # 14141

Icon 1 posted      Profile for DakotasMom01     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for the info!

--------------------
Take Care,
DakotasMom01

Posts: 371 | From NJ | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

Icon 1 posted      Profile for METALLlC BLUE     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm adding this post to the guide.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

Posts: 4155 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
TIMACA also posted these Enterovirus links at another thread:
------------

See: http://chronicfatigue.stanford.edu/infections/entero.html

And: http://enterovirusfoundation.org/

Here's some info on enterovirus to get you started.

http://phoenix-cfs.org/IntChia1.html

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.

(Timaca)

========================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=072837#000026

Topic: Parvovirus B19 should be included in Lyme differential Dx!!!!

AliG - posted 12 October, 2008
-

[ 12-16-2011, 04:49 PM: Message edited by: Keebler ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
DeafFromLyme
LymeNet Contributor
Member # 18795

Icon 1 posted      Profile for DeafFromLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dumb question coming from a newbie...

Are these tests to confirm Lyme and not something else, or are these things that come with having Lyme?

I see the HHV allot around here and am just curious.

Thanks! [Smile]

--------------------
Erika

IgM Band 23 +

www.24weekperfectbaby.blogspot.com

Son's blog born at 24 weeks.

Posts: 356 | From massachusetts | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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 ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
electrolite
LymeNet Contributor
Member # 16404

Icon 1 posted      Profile for electrolite     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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 ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
electrolite
LymeNet Contributor
Member # 16404

Icon 1 posted      Profile for electrolite     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks, Keebler.

--------------------
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  |  IP: Logged | Report this post to a Moderator
unsure445
LymeNet Contributor
Member # 15962

Icon 1 posted      Profile for unsure445     Send New Private Message       Edit/Delete Post   Reply With Quote 
What does testing positive for some of these viruses mean?

Does it mean your immune system is in really bad shape?

Are your chances of recovery not as good? Are you more likely to relapse?

Or do most chronic lyme patients test positive and its no big deal.

I apologize for the novice questions but my doctor has been really vague about this.

Thanks for the great advice Timaca!

--------------------
unsure445

Posts: 808 | From northeast | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
lassie
Member
Member # 17813

Icon 1 posted      Profile for lassie     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 27 | From my own little world | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
Need Lots of Help
LymeNet Contributor
Member # 18603

Icon 1 posted      Profile for Need Lots of Help     Send New Private Message       Edit/Delete Post   Reply With Quote 
Timca,

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  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
This lab just came up on another post today so I thought I'd add this here:

Speciality Laboratory in Valencia, California --

http://www.specialtylabs.com

. . . 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):

www.specialtylabs.com/tests/display.asp?keyword=Chlamydia%20&assay=1&technotes=0&noses=yes

--
More about Cpn: www.cpnhelp.org

[ 04-15-2010, 06:02 PM: Message edited by: Keebler ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
LindaS
Member
Member # 20251

Icon 1 posted      Profile for LindaS     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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.

===================
http://en.wikipedia.org/wiki/Xenotropic_murine_leukemia_virus-related_virus

XMRV: Xenotropic murine leukemia virus-related virus

=====================

http://www.nytimes.com/2009/11/12/giving/12SICK.html?scp=3&sq=XMRV&st=cse

A Big Splash From an Upstart Medical Center

By DENISE GRADY (The New York Times)

Published: November 11, 2009

- Article about CFS and the XMRV discovery

========================

Through the CFIDS Association:

http://www.cfids.org/xmrv/nci-guidelines.asp

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 ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
djf2005
Frequent Contributor (1K+ posts)
Member # 11449

Icon 1 posted      Profile for djf2005     Send New Private Message       Edit/Delete Post   Reply With Quote 
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."

djfemailbox@yahoo.com

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
djf2005
Frequent Contributor (1K+ posts)
Member # 11449

Icon 1 posted      Profile for djf2005     Send New Private Message       Edit/Delete Post   Reply With Quote 
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."

djfemailbox@yahoo.com

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
Timaca just posted this at another thread. While links for some foundation may be above, it's the mention of labs that is new info:

www.hhv-6foundation.org

www.enterovirusfoundation.org

Focus diagnostics is a good lab for testing HHV-6, EBV, Cpn and most other infectious pathogens.

ARUP is best for enterovirus.

(Timaca)
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
sue-in-austin-tx
Member
Member # 24174

Icon 1 posted      Profile for sue-in-austin-tx     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
sickpuppy
LymeNet Contributor
Member # 23846

Icon 1 posted      Profile for sickpuppy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Got the lab test back today that I'm HHV-6 pos.
Did a search online earlier to find out what this means but didn't find satisfaction.

Timaca, Keebler, or anyone can you give me a quick rundown of HHV 6?

Very sleepy right now. Can barely read or type.

Posts: 702 | From North Eastern USA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
aiden424
LymeNet Contributor
Member # 7633

Icon 1 posted      Profile for aiden424     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 804 | From South Dakota | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
street129
LymeNet Contributor
Member # 23472

Icon 1 posted      Profile for street129     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.......

http://en.wikipedia.org/wiki/Human_herpesvirus_6

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.

--------------------
IgM: Neg Neg 34IND 39IND
41+ 83-93IND

IgG: Neg Neg 41+

cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system

GOD GIVE IT, AND GOD CAN TAKE IT AWAY

Posts: 655 | From new york | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
More detail here about HHV-6 and how serious it could be for lyme patients - and how treatment can help:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/91255

Topic: What is HHV-6.

Timaca adds more to that discussion as well.
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
Emla just posted this from a 2/20/10 Q & A about XMRV.
---------------------------------------

A summary of the Mikovits/Cheney XMRV and CFS Q&A session can be read by clicking on the link down bellow.

http://health.groups.yahoo.com/group/infection-cortisol/message/1320


You can also listen to an audio replay of that presentation here: http://www.divshare.com/download/10538222-efe

A few highlights:

Peptide T may be a useful treatment for XMRV

PCR testing for XMRV is INEFFECTIVE.

XMRV can cause other viruses such as EBV,CMV,HHV-6 to reactivate.

Cortisol feeds the virus.

===================

some discussion about that back at the LymeNet thread:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/91358
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
HHV-6 can be treated with valcyte.

Enteroviruses are best addressed with oxymatrine. (a chinese herb)

Both medications have helped me substantially.

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725

Icon 1 posted      Profile for BackinStOlaf     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

 -

Posts: 1121 | From New York, New York | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
(thanks to Kathy B at my state's lyme yahoo board).

This article discusses the mix:

http://floridalymesupport.com/Fisch1.htm

Chronic Borreliosis Complex and Neuroendocrine System Disorders

- By Carol Fisch,
 Adjunct Professor Emeritus, Microbiology, Immunology, Parasitology, 
Proficient in Stealth Pathogens
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
www.washingtonpost.com/wp-dyn/content/article/2008/08/29/AR2008082902519.html?hpid=smartliving

LONG-TERM ILLS TIED TO BAD FOOD - Symptoms May Arise Years After Poisoning

=================

www.safetables.org/Victim_Support/dealing_with_fbi.html

DEALING WITH FOODBORNE ILLNESS

What to do if you think you or a loved one may have a foodborne illness.

==================

www.safetables.org

S. T. O. P. - Safe Tables Our Priority

Organization which works to promote food safety and prevent food borne illness.

Supports foodborne illness victims, educates consumers about unsafe food . . . .

===========================

More links at this thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/114859?#000002

FOOD POISONING ?
-

[ 02-11-2012, 04:32 PM: Message edited by: Keebler ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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.
---

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA Links (including KPU/HPU)

=======================

Other things to consider during diagnostics:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

Topic: To everyone with CARDIAC symptoms please read!

[ 09-21-2010, 07:31 PM: Message edited by: Keebler ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
XMRV / HGRV

I know there are a few other links about XMRV / HGRV but I've not managed to collect those. This one caught my eye today.

Dogmom2 posted this:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/99192?

Letter from dr. with cfs/lyme -

http://treatingxmrv.blogspot.com/2010/09/my-written-testimony-to-cfsac.html

Written testimony of Jamie Deckoff-Jones MD to CFSAC
September 17, 2010
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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.
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://www.cfids.org/webinar/series2010-past.asp#14

CFS and the Viral Connection by Dr. Komaroff at Harvard is worth taking a look at. There are slides and a video.

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here's some info on XMRV and MLV:
http://www.cfids.org/mlv/default.asp

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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.

---------------

http://www.leptospirosis.org/topic.php?t=30

The Leptospirosis Information Center

Overview of human leptospirosis - guide for the public

----------------------

http://www.leptospirosis.org/topic.php?t=41&f=34

Persistent human leptospirosis - professional guide

=================================

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/94989

LEPTOSPIROSIS - LymeNet thread
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Terminator
LymeNet Contributor
Member # 27328

Icon 1 posted      Profile for Terminator     Send New Private Message       Edit/Delete Post   Reply With Quote 
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  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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.
-------

http://www.leptospirosis.org/topic.php?t=41&f=34

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 ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
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.
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
Detail about a new Borrelia Culture Test here:

http://betterhealthguy.com/joomla/lyme-disease/testing

Testing options - See #15

=======================================

Specifics on the new test:

http://betterhealthguy.com/joomla/blog/248-new-borrelia-culture-test-available

and

http://www.researchednutritionals.com/information.cfm?ID=255
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
Excellent link from another thread.

Timaca shares when detailing that there are a few ID doctors are very good and dedicated detectives in the world of stealth infections, etc.:

" . . . And this particular ID doctor is working extremely hard to figure out what people like you and I are sick with:

http://chronicfatigue.stanford.edu/

He deserves all the praise, money and support he can get. (end quote for Timaca).
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks, Keebler. :-)

That website is currently being updated and the new research studies will be explained in further detail.

I am very much looking forward to the results of study #1 which they are working very hard on right now: http://chronicfatigue.stanford.edu/about/projects.html

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
Timaca,

I sure hope you continue to keep us posted on the other stealth infections. I really count on your links. I also post this thread often for newcomers.

Thanks.
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
Relevant when trying to make diagnoses or even figuring out symptoms after diagnosis. Don't miss:
---------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors

=============================================

If not yet done, some might consider being assessed for celiac. It can be genetic but also triggered by certain infections.

Even if not a true celiac - because of "leaky gut" - many LLMDs strongly suggest those with lyme go gluten-free at least until well into remission.

More detail here (but be aware that there are a lot of junk foods labeled gluten-free. Best to stick to real foods, not processed).
-------------

www.celiac.com

www.celiacsolutions.com
-

[ 02-08-2012, 06:25 PM: Message edited by: Keebler ]

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler         Edit/Delete Post   Reply With Quote 
-
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/119287?#000000

LEISHMANIA

Marnie has posted this thread - also important to consider for anyone with chronic illness.
-

Posts: 47816 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
A patient care page was added to the Stanford website recently. It may be helpful to some people: http://chronicfatigue.stanford.edu/patient_care/

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2019 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Webmaster