seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I've asked a lot of questions about this lately because I'm learning.
My ID doc said today there literally are endless viruses to test for and it's futile as nothing can be done anyways if they are found. This surprised me as the doc is very thorough and tests for everything under the sun.
I must be grasping at straws. I heard Timaca'a story of issues and treatment and that's a compelling story to pursue it. Is this an isolated incident? I don't want to waste insurance $$$ running down stuff nothing can be done about. That's not worth my time.
He didn't mention anti-virals. I'm guessing they are not used much at all.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
/\ Anyone have anything to say?
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am of the opinion that if you treat the Lyme and co's that the viral issues will be able to work themselves out once your body is cleared of the other stuff.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I will be starting valtrex next week to address my viral issues.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Eleven years after positive labs for chronic lyme - babesia and ehrlichia - I finally got tested for Cosxackie virus (positive for some types); Cpn (positive) and HHV-6 (positive).
Some doctors say these don't mean much - that I had them in the past - but some say it can point to chronic infection.
While, sometimes, when the lyme + co have been addressed, the body's immune system will go back to work. That is not always the case, however. Sometimes, when other infections are treated, then the body has the strength to better tackle lyme and other tick-borne infections.
This is where a really good LLMD can shine. They know much more about some of the chronic stealth infections in general.
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.
- from the later search, the first two may be of interest to many people here:
Identification of HLA-A*01- and HLA-A*02-restricted CD8+ T-cell epitopes shared among group B enteroviruses.
And
Possible triggers of decompensated chronic complex tinnitus with a therapeutic approach as relating to treatment of epilepsy.
=========
- Here are just a few links from a basic Google search on Coxsackie - there are different types, therefore, different levels of tests, too. Coxsackie A is common in childhood illness. The Coxsackie B is what can cause more serious problems.
The most well known Coxsackie A disease is hand, foot and mouth disease (unrelated to foot and mouth disease), a common childhood illness which affects mostly children aged 10 or under,[1] often produced by Coxsackie A16.
In most cases infection is asymptomatic or causes only mild symptoms. In others, infection produces short-lived (7-10 days) fever and painful blisters in the mouth (a condition known as herpangina), on the palms and fingers of the hand, or on the soles of the feet.
There can also be blisters in the throat, or on or above the tonsils. Adults can also be affected. The rash, which can appear several days after high temperature and painful sore throat, can be itchy and painful, especially on the hands/fingers and bottom of feet.
Other diseases include acute haemorrhagic conjunctivitis (A24 specifically), herpangina, and aseptic meningitis (both Coxsackie A and B viruses).
Coxsackie B viruses also cause infectious myocarditis, infectious pericarditis, pleurodynia, and immune complex-mediated glomerulonephritis.
Coxsackie B is the name of a group of six serotypes of pathogenic enteroviruses that trigger illness ranging from mild gastrointestinal distress to full-fledged pericarditis and myocarditis.[1]
. . . The coxsackie viruses are divided into two major subgroups, labeled A and B. There are 23 known coxsackie A viruses that usually cause only enteric diseases, and 6 known coxsackie B viruses, which are the ones of greatest concern because of their ability to cause serious diseases beyond the intestinal tract.
Coxsackie B3 has been found to be one of the main causes of certain debilitating or life-threatening diseases, such as viral myocarditis. . . .
The coxsackie virus apparently produces few or no symptoms in most instances, ... Rarely, the coxsackie virus can cause a more severe disease. ...
. . . Coxsackie B viruses are estimated to be responsible for at least 50% of the cases of infection-caused heart diseases. For reasons yet unknown, the cardiac disease caused by this virus mainly occurs in middle-aged men, with onset occurring, on average, around age 42. The cardiac disease becomes apparent about two weeks after exposure to the virus. . . .
. . .
The early symptoms of the coxsackie-induced cardiac myopathy include some generalized viral symptoms-fever, fatigue, malaise-with the addition of chest pains.
As the virus enters the heart cells, the immune system attacks and damages both infected and normal heart cells; the affected individual feels severe fatigue when there is significant impairment of heart function. In most cases, the disease is resolved spontaneously without any treatment, though some permanent heart damage may have occurred.
But, in about 20% of the cases, there can be progressive disease or recurrence of symptoms; the heart damage can be extensive, causing arrhythmias, weakened left ventricular functions, and, in the worst cases, heart failure requiring heart transplantation. In these severe cases, cardiac disease progression persists after the virus is long gone: the immune system continues to damage the heart.
Effective medical therapies have yet to be worked out for viral myocarditis; one approach is to administer anti-inflammatory or immunosuppressive drugs during the early stage of the disease to impair the immune attack and resulting inflammatory response that damages the heart.
Patients are usually told to rest, as the damaged heart does not withstand the demands for vigorous activity.
. . . .
- Full article at link.
-
=================
Rest required:
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle -
excerpts:
``when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts.
We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. (CFS).''
[ 02. December 2008, 03:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I've treated for a variety of virus' with valcyte along with
Treating Lyme, babesia and bartonella.
My LLMD views these virus' as co-infections
Even though mine were triggered by Lyme and my depressed immune system.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
seekhelp,
You said your "ID doctor" . . .
Hmm. Are you being treated by a LLMD?
Most ID doctors are not up to speed on all this. Yours seems to not know where to begin. Yes, there are many viruses. Many. However, there are a few that really matter in the scope of lyme and other chronic stealth infections.
Cpn, which is a bacterial infection, can also be chronic. But few doctors are up on that research and it can be as debated as lyme in the ID circles.
Now, back to there being many viruses. Well, that is why I like allicin and freeze dried garlic so much. It has a broad reach. You can do a cross search for this and various bacteria and viruses at PubMed.
LATENT CHLAMYDIAL INFECTIONS: THE PROBABLE CAUSE OF A WIDE SPECTRUM OF HUMAN DISEASES
Authors: Bazala, Renda from the Czech Republic - Oct. 2007
- Twelve page article at link.
-
[ 02. December 2008, 03:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hey Keebler~ Thanks for posting my info and thanks ESPECIALLY for calling it an "excellent" post.
Seekhelp~ It is not a waste of time or money to test for these different pathogens. Truly it is not. I know several people personally who have benefited from anti-viral treatment. There are also people who post at www.cpnhelp.org who have benefited from treating Cpn. (chlamydia pneumonia)
If you don't turn these stones over and you are ill with one of these pathogens, then you will miss a chance of getting well.
I'm in a better place than I was due to antiviral and antibiotic treatment.
I don't think you want to give up and stay as you are. These pathogens may not be the cause of your problems, but you won't know unless you do some testing.
Keep your chin up and keep searching.
My best to you, Timaca
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks Keebler and everyone else. i did my best to pursuade my docs to do viral testing. My LLMD doesn't seem to be knoweledgeable on them and doesn't factor them in the treatment plan. At least I have this impression since no mention has been made. That's a fair assumption I believe.
My ID doc is knowledgeable, but just not agreeing to do tests, which isn't any better in my opinion.
You may think this sounds weird I mention a LLMD and an ID doc. Well, when the LLMD isn't thoroughly ruling out things mentioned here by other prominenent LLMDs, one has to take all routes possible to get whatever that needs to be tested done.
Ironically instead of my LLMD, I was able to beg my PCP to run the tests mentioned on here. That's a sad state of affairs in my mind. BUT, if the end result has value, oh well. I'm all for it. As Timaca said I want to know what I may be facing.
Maybe I'm chasing pipe deeams, but......it's pretty weird to get violently ill and have to stop working for 13+ months!!
I should know in 1-2 weeks my findings.
One thing I've learned from Lymenet is even though we use the title LLMD for all docs willing to treat chronic Lyme, there can be a HUGE difference in the doc's ability to experiemnt, hunt out other possible reasons, etc. I guess my expectation is it should be part of the package when you have out-of-network docs specifically treating this evil disease! Am I wrong?
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massman
Unregistered
posted
There are some excellent mixed herbals designed specifically for dealing with viruses.
The best I know of and use is from Inno Vita from Utah.
They also have some specific things for bacteria. It seems to me some get lost in the enormity of the disease and it also seems some abx treatment seems to go on for years with little overall improvement.
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
seekhelp~ My experience has been that most doctors, even ones who are trailblazers in their fields, tend to be focused on their fields and don't have on broad glasses.
I think that is beginning to change. (It needs to change). The lyme docs have to begin to test their lyme patients for viruses and Cpn. And the Cpn doctors have to begin testing for HHV-6. And the viral doctors have to look for both.
Basically, in someone with the Falling Apart Syndrome, they have to be tested for everything. Few doctors are doing that.
I'm glad you got your PCP to test you. Keep us posted on what the test results are. I hope they reveal a path of action. (Meaning something comes back positive). However, even if everything comes back negative, that is an answer too.
Remember to keep a record of your test results, and remember that high IgG antibody titers may indicate active, chronic infection...even with a negative IgM test.
Best, Timaca
[ 03. December 2008, 09:46 AM: Message edited by: timaca ]
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