HHV-6 Posts by NormaAK October and November 2000 Wauwatosa lab links virus to MS - Small study finds signs of herpes in lesions By JOE MANNING of the Journal Sentinel staff  - Last Updated: Nov. 10, 2000 A small, 4-year-old private viral diagnostic company in Milwaukee County Research Park may have unlocked a key to the cause of multiple sclerosis, a disease marked by the destruction of a protective covering of nerve fibers. For the first time, a human herpes virus has been isolated from lesions on tissues of the central nervous system that are characteristic of MS. Konstance K. Knox, one of the founders of ViraCor Diagnostic Laboratories in Wauwatosa, said the finding makes a strong case for the virus, called HHV-6, or human herpes virus six, being the cause of the infections. Knox feels that with this information, MS potentially could be stemmed in the early stages of infection through the use of anti-viral medication. ViraCor is the only commercial lab in the country that can detect and grow HHV-6, Knox said. Multiple sclerosis is a chronic, often disabling disease of the central nervous system in which the immune system turns on nerve tissue and destroys it. Symptoms may be mild, such as numbness in the limbs, or severe, including paralysis or loss of vision. Most people with MS are diagnosed between ages 20 and 40. About 7,500 people have the disease in Wisconsin and 350,000 nationwide. The destruction of myelin, the fatty sheath that surrounds and insulates the nerve fibers, causes the nerve impulses to be slowed or halted and produces the symptoms of MS. Knox believes it is an infection with the virus that triggers the initial destruction of the myelin. Then, after the body's natural defenses have fought the infection for years, the immune system mistakenly begins to attack the myelin tissue in the later stages of MS, she said. While Knox and other researchers have speculated on HHV-6 being a viral trigger for some time, Knox and others contributing to her research have now found the active virus in lesions of the central nervous system destroying the myelin layer. Knox is the main author of a research paper on HHV-6 and multiple sclerosis in the current publication of Clinical Infectious Diseases. "It's not a new concept that a virus may be involved as a trigger. What is unique (in the study) is that this is the first time a virus has been shown to be directly infecting and actively replicating in patients with MS," she said in an interview. "We have an agent at the site of the disease." Knox said cells actively infected with HHV-6 were found in 89% (17 out of 19) of tissue samples that showed active destruction of myelin. That compares with 13% (three of 23) tissue samples that were free of active disease. Knox said outbreaks of HHV-6 are like other herpes infections - such as cold sores or fever blisters - that do a lot of tissue damage before the immune system gets them under control. The typical blisters of cold sores come and go, as people afflicted with that virus are well aware, she said. She feels it's the same with HHV-6 in its attack on myelin in the spinal cord and brain. The good news, Knox said, is that early in an HHV-6 infection, the virus can be treated with a medication called Ganciclovir. But, she said, she is having difficulty convincing the world of science of that possibility. Anti-viral treatment is not now part of standard treatment for MS, Knox said. In fact, there is little treatment for the disease, she said. In a way, Knox said she feels like a voice crying in the wilderness because, at this point, few researchers want to listen. She points to the discovery about six years ago in which definitive evidence showed that stomach ulcers are caused not by excess stomach acid, as had long been presumed, but by the bacterium Helicobacter pylori. Today, ulcers are treated primarily with antibiotics instead of acid-blocking drugs, she said. "We will find there are viral agents underlying a lot of chronic inflammatory diseases," Knox predicted. According to the National Multiple Sclerosis Society, "more than a dozen viruses including measles, canine distemper and HHV-6 have been investigated to determine if they are involved in the development of MS, but it has not yet been definitively proven that any one virus triggers MS," said the society, which funded a portion of Knox's work with a $27,500 grant. "Although the number of people in this (Knox's) study was small, the findings offer intriguing new evidence for possible association of HHV-6 with multiple sclerosis," the Wisconsin Chapter of the National Multiple Sclerosis Society in Waukesha said in a statement. While "there is no evidence from these studies that HHV-6 either causes MS or is responsible for attacks or worsening of disease," the statement said the society was funding research into the role of HHV-6 in multiple sclerosis - something the society has spent $2 million for since 1990. "This was a small study, but we have an important piece of the puzzle," Knox said, adding that larger studies and clinical trials are needed. "We are trying to convince other investigators to look at and support this. There is huge resistance. We can put a lid on these infections," she said. Most of the funding for the study came from ViraCor, which provided funds to the Institute for Viral Pathogenesis, a not-for-profit research arm of ViraCor that conducted the study, Knox said. Appeared in the Milwaukee Journal Sentinel on Nov. 11, 2000.       normaAK ---------------------------------------------------------- HHV-6 Information Posted October 27, 2000: A) Getting tested for HHV6 B) Where to send your blood for testing & how to package if you don’t have the ViraCor HHV6 blood draw kit C) Numerous general anti-viral treatments and anti-HHV6 specific treatment D) Norma’s treatment course and results HERE IS A LADY'S EXPERIENCE WITH TAKING THE ANTIVIRAL FOR HHV6. KATE’S LETTER WAS LIFTED FROM ANOTHER MS MESSAGE BOARD. ALSO, SOME TIPS BELOW FOR GETTING THE BLOOD DRAWN, PACKAGED AND SHIPPED. Hello dear Everybody! I just want to say I have MS - diagnosed 2 years ago after beginning to fall down, MRI test etc etc - guess you all know how it goes.. Apparently I had the very first MS-attack at age 17,(20) years before diagnosis - unknown to me at the time, and the doctors did not mention a possible outcome of MS then either, because it might not have been) - when I had Optic Neuritis and went blind overnight. Hospitalised and treated with heaps of steriods and all was well in a few weeks. Then nothing until 20 years later, when the legs failed. Since then, on & off, main problem has always seemed the severe fatigue and mobility went to the extent of me moving with walking stick only. I have also had flu for at least 3times a year FOREVER, really, so when this just happened again recently, I was once again tested for HHV6 (since HHV6 can cause fevers, pains, muscle aches and so on). I was previously tested for it about 18 months ago, but then the test results only showed that I had been exposed to it sometime - as have most people! - but it was inactive and resting then. Now, however, when I had these flu-like symptoms, the test results were FANTASTIC - in that HHV6 had now re-activated, was VERY highly active and causing lots of havoc (and presumably attacking many nerves and irritating the immune system). So, my dear sweet Doc, who is the greatest in the world, and always open to new things and the patient's wishes - doesn't that make him one in a million? - was amazed himself, and immediatelyprescribed ACICLOVIR (an anti-herpes drug - 5 a day of 200mg every 4 hours for 5 days minimum). Ever since I took the first FOUR pills only, I was walking STEADY, much faster than before, NO wobbling, resembling Homo Erectus again... I have now thrown my walking stick in the corner and can do nicely without it - no stick, no railings, no clutching peopl. Also, I no longer take muscle relaxants - all pains and spasms have just GONE!!! Energy also is super - severe fatigue also is simply gone.. Nobody can yet promise it will stay like this, or whether there really IS a connection between HHV6 and MS, but personally, right now I do not care, I am just ecstatic at these results! Thing is, I had found out about it through the Net, and I told Peter (my Doc) about it, who was immediately all for it - and now we are both soooo pleased and happy! So, chin up everyone - just keep searching and keep hopeful, and something else good might happen for all of us! In the meantime, if you haven't tried this, do give it a go - it's a game of wait and see, until you HAVE something and the virus re-activates, but then, we have nothing to lose, do we.. Regards to you all, and all the best! Kate ------------------------------------------------------------------------------------------ TIPS ON GETTING BLOOD DRAWN, PACKAGED AND SHIPPED Call ViraCor Diagnostic Labs in WI at (414) 774-0981. When I called I spoke to Dan Harrington who was very helpful. Since I didn't have ViraCor's blood draw/shipping kit in advance, he advised me on what the lab would need in the way of the tube required and Federal Express' packing requirements for shipping human tissue. Find out which lab your doctor is faxing your blood draw RX to. Call the lab and make sure they have either an ACD blood tube or a green top hepernized tube. ViraCor prefers the ACD tube but can use the green top heperized one. Next call Federal Express and ensure they have their specimens diagnostic shipping bags at your local Federal Express office, also inquire as to the Fed Expresses deadline for getting it to them for shipping FEDEX PRIORITY OVERNIGHT. The blood won't be good for testing if 48 hours lapses between draw and ViraCor's receipt of it. In Anchorage, my blood had to be at Fed Ex by 2:30pm, it was $24.44 to ship it. Fed Ex won't accept your blood sample for shipping if their stock of these special bags are out. You will have to pack and ship the blood yourself, so here's what you will need in the way of packing materials. I took them with me to the local lab and packaged my blood in their office then headed for the Federal Express office. Before going off to the lab to get your blood drawn, make sure you have the form called "Test Request Form" printed out and filled out. The form is found at http://www.hhv6.com/trf.htm. The lab will fill out the section of the form under "Specimen information". Call your doctor's attention to the section of the form "Individual Tests" and "Panel Tests", as there are some boxes to check off in that area. ViraCor will bill your insurance, so also make sure you have your insurance information along with the form. The blood needs to stay at room temperature. Materials for Packing Blood Tube: 1) 2 zip lock plastic bags 2) bubble wrap 3) scissors 4) packing tape 5) small box that will fit the blood tube with bubble wrap around it. Appx. 5" tall by at least 1.5" fat. I used a box that was 6" X 1.5" X 4". 6) A large envelope or other similar container that the box will fit into. Packing the Tube: Wrap bubble wrap around the tube of blood until it will fit snugly inside the box and doesn't have wiggle room, secure the bubble wrapped tube with tape around the perimeter and on each end. Seal the bubble wrapped tube of blood inside of the zip lock bag. Place the bubble wrapped, zip bagged tube inside the box, tape the box closed. Place your filled out ViraCor form and your insurance papers inside the other zip lock bag. Put the box containing the blood tube along with your zip locked paperwork into the large envelope. My lab told me to put the paperwork in a zip lock bag incase the blood tube breaks during shipping, your paperwork won't get damaged and they will know who to notify in the event that happens. Go to Federal Express. Ask for the diagnostic specimen bag and place your package containing blood and paperwork into it. Ship it to: ViraCor Diagnostic Lab C/O Federal Express 11101 W. Plank Court Wauwatosa, WI 53226 ViraCor's phone (414) 774-0981 ViraCor sends someone to Federal Express every morning to pickup blood samples -------------------------------------------------------. got my HHV6 test result today! Monday, October 9, 2000 It is positive. I'm waiting for Dr. Fischer to call me and tell me what the next step is. I posted a couple of weeks ago that I had had my blood drawn to ck for the virus. New venture will be trying antiviral med. and determine if I see a difference. I waited to have my blood drawn on a day I felt the flu symptoms that Kate described in addition to shingles like nerve pain in my left leg and foot. Sure enuf, it did show up as active. Will let you know what the doc Rxs for me. The day I'd had it drawn was a day I'd had stress followed by not feeling my best. More Information on HHV6 resolution Tuesday, October 10, 2000 OK, got more info, am going to see my doc tomorrow and make a decision. Currently, there are 3 antiviral agents: valtrex; acyclovir, gancyclovir. Valtrex and acyclovir are available in pill form. Gancyclovir is currently only available in IV form. The oral (pill) of gancyclovir will be available in May or June 2001. Problem: gancyclovir is more effective in "curing" accute HHV6 and CMV infections in addition to eliminating the "circulating" HHV6 and CMV in chroinc infections. Chronic HHV^ infection is the one MSers are concerned with. Studies indicate that CMV can become resistant to gancyclovir, there are no studies thus far that HHV6 becomes resistant. IV gancyclovir must be administered twice a day for a period of a few weeks. Tomorrow I will post what we finally decide is the best course of action for me. And hey y'all, there's more on HHV6.... Thursday, October 12, 2000 My physician, Dr. Fishcer also learned from Dr. Brewer, infectious disease specialist in MO. that in MSer that test positive for active HHV6, the NK (natual killer) immunue cells do not function up to normal capacity. For this, in advance of treating HHV6, a blood test called NK functional assay is performed; I had my blood drawn for this yesterday. This test determines NK functional levels, it is not an NK count. Once I begin treating my HHV6, I will take 2 blood tests. I will repeat the one I did a couple of weeks ago where the test determines positive for active or negative for inactive HHV6, along with repeating tests to determine whether or not the functioning level of my NK immune cells has improved. After consulting with infectious disease specialist, Dr. Brewer, my doctor opted for me to go onto Transfer Factor (TF). I started TF on Monday October 16th. More information on TF can be found at: http://www.immunitytoday.com/info.html ----------------------------------------------------------------------------------------- By Wednesday, October 18th, my 3rd day on TF, my flu like symtoms along with the shingles like pain in my leg and foot had vanished.  normaAK Re: For those using LDN, are you combining that with other treatments? - Wednesday, 01-Nov-00 17:50:36 Am using IM injectable AMP, B12 and B complex, Goodshape's histamine, LDN, and anti-HHV6 Transfer Factor (TF). Been on histamine since August a year ago, AMP, B12, B complex for 8 or 9 mos., LDN for over 4 mos., and the TF for 2 weeks. I used to walk very bad, speech sounded drunk, had horrendous amount of residual blindness in both optic nerves, and huge cognitive problems that cognitive therapy didn't help at all. All these were very noticable to the casual observer. NOT ANY MORE! No one can tell now, and for the most part, I forget I even have MS! normaAK So I took the leap! - Wednesday, November 1, 2000 just had my blood drawn to ck for the Epstein Barr virus (EBV) and the Chlamydia Pneumonia bacteria! Should get the results within 2 weeks and will let you all know the outcome. My doctor is now more amenable to my switching to Valtrex when I run out of my TF in another 2.5 mos or even sooner, perhaps. He has already picked out the antibiotics he will Rx for me if I am hot on the bacteria test. Hopefully Valtrex will work on all the virus' my immune system has not controlled and kept in a dormant state. I asked him between Acyclvir and Valtrex, which is more effective. He said Valtrex has shown better results of the 2. He is also hoping that when the oral Gancylovir becomes available next spring that it will be effective agains the EBV in the event I have it and the Valtrex is not effective on it. normaAK (Responding to Ms Hist. Question): No prob. Amy, I was dxed 16 years ago with..- Wednesday, November 1, 2000 R&R, I was 30 years old at the time. I was reclassed to SP 6 years ago when I experienced losses in just about every bodily fuction there is. I was nothing short of a complete mess! Besides physical losses in arms, legs, and internal organs, my neurologist sent me to cognitive therapy as I was getting lost in very familiar places and had lost the ability add 2 + 2 in my head! I was doing so bad the cognitive therapist came to my house 3 times a week instead of me going out to the therapists office. normaAK more HHV6 research - Thursday, November 2, 2000 Human Herpesvirus 6 and Multiple Sclerosis: Systemic Active Infections in Patients with Early Disease Knox KK, Brewer JH, Henry JM, Harrington DJ, Carrigan DR Institute for Viral Pathogenesis, Milwaukee, WI 53226, USA. kknox@hhv6.com By means of immunohistochemical staining, cells actively infected with human herpesvirus 6 (HHV-6) were found in central nervous system tissues from 8 (73%) of 11 patients with definite multiple sclerosis(MS). Interestingly, 17 (90%) of 19 tissue sections showing active demyelination were positive for HHV-6-infected cells compared with only 3 (13%) of 23 tissue sections free of active disease (P<.0001). Central nervous system tissues from 2 of 28 normal persons and patients with other inflammatory demyelinative diseases were positive for HHV-6-infected cells (P<.0001), and the 2 positive cases were diagnosed as having HHV-6 leukoencephalitis. By use of a rapid culture assay, blood samples >from 22 (54%) of 41 patients with definite MS were found to contain active HHV-6 infections, compared with 0 of 61 normal controls (P<.0001). No significant difference was found between HHV-6 viremia-positive and HHV-6 viremia-negative MS patients with respect to type of disease (relapsing/remitting or progressive). In contrast, patients with active HHV-6 viremia were significantly younger and had shorter durations of disease than did HHV-6 viremia-negativepatients. Clin Infect Dis 2000 Oct;31(4):894-903 Source: www.ncbi.nlm.gov normaAK TESTING INFORMATION ADDED 1/4/01 ANOTHER LAB FOR TESTING FOR HHV6 AND EBV THEY DO EITHER BLOOD OR URINE FOR BOTH HHV6 & EBV INSTRUCITONS: Eastern Virginia Medical School Department of Pathology (Ship Federal Express Cool Pack to:) 700 OLNEY Road Room 2139 Norfolk, Virginia 23501 Web site address: http://www.evms.edu/pathology/laboratory.html Phone number: (757) 446-5792 fax (757) 446-7125 Costs: HHV6 Blood test $95.00 HHV6 Urine test $95.00 EBV Blood test $95.00 EBV Urine test $95.00 Eastern Virginia Med School (EVMS) Dept. of Pathology is doing VIRAL COUNT tests (both blood & urine) in addtion to determining whether the viruses are active or latent. A viral count test is called PCR Assay. BOTH BLOOD AND URINE SAMPLES SHOULD BE SHIPPED (FEDERAL EXPRESS COOL PACK) IN TIME FOR THE SAMPLE(S) TO BE RECEIVED AT EVMS BY THURSDAY OF EACH WEEK. Blood specimen tube requirements for both HHV6 & EBV: #1 choice is EDTA Purple top tube #2 choice is Blue top / sodium citrate NO GREEN TOP HEPRIN TUBES PLEASE Ship Federal Express Cool Pack Urine speciment requirements for HHV6 & EBV: Sterile catch cup, urine can be frozen before shipping in Federal Express Cool Pack. EVMS will bill the doctor’s office that ordered the samples, who can bill your insurance. Or you can pay EVMS directly, they will provide you the invoice to received insurance reimbursement. ABOUT the other lab doing testing - VIRACOR - I am waiting to find out what their prices are for PCR virus count testing for HHV6 & EBV. At present 911/28/00) ViraCor is doing just HHV6 test results that show positive or negative for active HHV6. They are supposed to begin doing HHV6 PCR testing next month in December. I am not sure what their current EBV test results determine.