Discussions By Condition: I cannot get a diagnosis.

spastic paraparesis from HTLV-1

Posted In: I cannot get a diagnosis. 28 Replies
  • Posted By: Anonymous
  • December 25, 2006
  • 11:42 PM

help! i am looking for others with this disease(HTLV-1) to see
if their treatments are improving their condition

i go to a major cancer center, and there is no one else being treated in the
whole hospital-my doctor is giving me methadone (6x10 mg 4 x daily) for
the pain,also actiq 800 mg for pain-also trying lidoderm patches,electro-
therapy,mucle relaxers

but still have increasing leg pain and spasicity

anyone with any suggestions?

peace, john

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28 Replies:

  • JoHn: I have been diagnosticated with the HTLV-1/2 virus and the lack of information is killing me.Can you contact me and let me know about yourself and where are you receiving treatment for the condition.Thank you Margarita
    maravi1951 2 Replies
    • December 28, 2006
    • 01:57 PM
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  • JoHn: I have been diagnosticated with the HTLV-1/2 virus and the lack of information is killing me.Can you contact me and let me know about yourself and where are you receiving treatment for the condition.Thank you MargaritaMargarita, where do you believe got HTLV-1/2 Virus? I am having symptoms that match spastic paraparesis.
    Anonymous 42789 Replies Flag this Response
  • I don't know how I got the virus I have been married for 20 years ,(my husband is negative to the virus) I am not a drug user,never cheated to my husband,I had bariatric surgery in 2002 ,I had blood transfusion then but I was told that the blood banks screen the blood so I dont have an idea of to how I got in contact with the HTLV1/2 virus.I am having problems with mi left leg in the muscles.What are the sintoms for the spastic paraperesis?How did you get the virus?Moderated : Email address removed to protect user privacy.
    Anonymous 42789 Replies Flag this Response
  • I will like to know how did you become infected with the HTLV-1? Wich specialist diagnose the condition of spastic paraparesis ? I have the virus and I don't know where to go after being told of the positive virus results.I can't find other people with positive results.
    Anonymous 42789 Replies Flag this Response
  • source of infection can be very hard to define as many test positive after symptoms appear which may be 20 to 30 yrs after initial infection. this for the most part is a chronic illness rather than acute. Maintaining good physical conditioning is first line defense to offset the symptoms and drink plenty of water and if you like cranberry juice to avoid urinary tract infections.consult with your MD for other options as treatment is limited to a very few pharmaceuticals which may have little more than a time stemming effect.A close friend of mine has dealt with this affliction and is doing well through exercise and pt
    Anonymous 42789 Replies Flag this Response
  • How do I get in contact with you guys to be able to chat about this virus?Margarita
    Anonymous 42789 Replies Flag this Response
  • Hi, Im a 35 yrs old male and I was diagnosed with spastic paraparesis back in 93. I went from dr to dr trying to find out what was causing my legs to be weak and have spasms. Well they couldnt find a reason why. My MRI showed that my spinal cord was abnormal. Meaning it is smaller than usual. I went to Houston for testing and they too could not find anything that was causing my weakness. I had the baclofen pump implanted and had that for a few years but after I was "accidentally overdosed" I opted to have it taken out. That was in Dec 04. I take pain medicine sometimes just to ease the pain that I have once in a while. I had great Dr's through this whole ordeal, just wish there was an accurate diagnosis. One Dr wanted to say I had MS but some of my symtoms didnt match up. Another Dr said I would be in a wheelchair by the time I was 26. I use a cane to get around, not a wheelchair. Although I do use one once in a while or my elec scooter if I know there will be a lot of walking involved. Good luck to everyone who was diagnosed with this annoying condition.
    Anonymous 42789 Replies
    • November 13, 2007
    • 04:23 AM
    • 0
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  • Hi margaritaMy name is mayleen. my mother sonia was diagnosed with htlv1 about 2yrs ago. her health since has gone down hil, she had a baclofen pump implanted in her stomache and it has not helped her much she is also on morphine and oxycodone for the pain my mom is constantly in the hospital for severe pain. she is in constant pain and i am hurt to see her like thatshe feels alone. please contact me if u have any suggestions as far as to doctors and or treatment. it would mean so much to us. thanks mayleen:confused: l JoHn: I have been diagnosticated with the HTLV-1/2 virus and the lack of information is killing me.Can you contact me and let me know about yourself and where are you receiving treatment for the condition.Thank you Margarita
    maybee 2 Replies
    • December 27, 2007
    • 09:04 PM
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  • Hi my name is mayleen, my mom was diagnosed with HTLV1 about 2yrs ago and her health has been going down hill ever since she has lost alot of function in her legs due to the disease. She to also had the baclofen pump implanted and tha hasnt done much for her, she is also currently on morphine and ocycodone for the pain.please if any one can contact me for some support and or help with doctors or treatment. i would be so greatful.
    maybee 2 Replies
    • December 27, 2007
    • 09:05 PM
    • 0
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  • I suggest acupuncture to help with pain management with this disease. Also, has anyone tried a high quality aloe vera supplement? Aloe has specifically been studied in cancer research(leukemia especially), HIV/AIDS treatments as well as autoimmune dysfunction. I recommend Herbal Aloe Force Aloe as it also contains the essiac herbs, cat's claw, astragalus, and colloidal silver. Not a rep, just like this product. Best wishesDOM
    acuann 3080 Replies
    • December 28, 2007
    • 07:22 PM
    • 0
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  • hello everybody.I looked for a forum on htlv in the whole web, and this seems to be the only one. Since for our disease there's no effective treatment, nor curative neither therapeutical, sharing information may be extremely precious. I would share in first place the recent advances in research. What we can find out in the web is that some discoveries have been done! There are various (!) new potential compounds, already synthetized, or promising vaccine candidates. In particular two of these seem to need only to be developed as pharmaceutical products.First, in the worldwide patent websites there are the documents of a new antiretroviral substance licensed in 2006 as effective against hiv and htlv (i/ii) too. The report online says: "... The present inventors intensively studied and, as a result, found out that a novel carbamoylpyridone derivative has the strong HIV integrase inhibitory activity. Further, the present inventors found out that the present compound and a drug containing the same are useful as an anti-virus drug (e.g. anti-retrovirus drug, anti-HIV drug, anti-HTLV-1 (Human T cell leukemia virus type 1) drug, anti-FIV (Feline immunodeficiency virus) drug, anti-SIV (Simian immunodeficiency virus)), particularly, an anti-HIV drug, an anti-AIDS drug, or a therapeutic for related diseases, which resulted in completion of the present invention shown below ..." The inventor equipe is a group of american and japanese scientists; the license-owner Pharmaceutical Companies are the very serious Companies GlaxoSmithKline Beecham Corp. and Shionogi & Co. (Japan); but in their product pipeline a such drug is still not present; nor trials seem to be still planned. Let's hope they will undertake a drug from this substance soon. (see e.g. http://www.freshpatents.com/Carbamoylpyridone-derivatives-having-inhibitory-activity-against-hiv-integrase-dt20071025ptan20070249687.php?type=description)In second place, a Pharmaceutical Company, AccessPharma, announced in 2002, inside a sort of burocratic rapport, to have "technology fortreating HTLV type I and II infection":"Viral Disease TechnologyWe acquired our viral disease technology through our acquisition ofVirologix. This technology is targeted for the prevention and treatment ofviral diseases, including HIV. These compounds target a critical enzymeinvolved in viral infection and replication. Analogous to reversetranscriptase and protease inhibitors that have shown effectiveness againstHIV. A Phase I/II study will be designed to study this product candidatein HIV patients. Positive clinical data would provide important validationfor this new class of HIV therapeutics. We also have technology fortreating HTLV type I and II infection. We acquired a part of thistechnology through a licensing agreement with the National Institute ofHealth".They must mean the vaccine (said to be succesful on animals) developed in middle '90 by a Company, named Virologix Corp., that was acquired by AccessPharma at the end of '90s:"Viral Disease Technology.We acquired our viral disease technology through our acquisition ofVirologix. This technology is targeted for the prevention and treatment ofviral diseases, including HIV. These compounds target a critical enzymeinvolved in viral infection and replication. Analogous to reversetranscriptase and protease inhibitors that have shown effectiveness againstHIV. A Phase I/II study will be designed to study this product candidatein HIV patients. Positive clinical data would provide important validationfor this new class of HIV therapeutics. We also have technology fortreating HTLV type I and II infection. We acquired a part of thistechnology through a licensing agreement with the National Institute ofHealth"(see e.g.: http://sec.edgar-online.com/2002/04/02/0000318306-02-000003/Section2.asp)(on the trials of Virologix: see e.g.: http://sec.edgar-online.com/1997/04/03/00/0000891554-97-000354/Section2.asp; or e.g.: http://ww1.aegis.org/news/pr/1996/PR960905.html)Also in this case, anyway, there is no mention of the "technology to treat HTLV" in the AccessPharma website. Let's hope this will happen soon.This are the most relevant advances I found out in the web. All this is very promising; but it's reasonable not to expect real therapeutical shifts in short times. Let's stay tuned.I pray everybody who has news in this matter to post here and to share information.At the end, I should want to ask, expecially to the so called "asymptomatic carriers", wich kind of treatment or empirical management you follow to contrast the virus activity ad to improve your health conditions; and which are your main symptoms.Thank You; Sincerely,Aldous
    Anonymous 42789 Replies
    • January 8, 2008
    • 01:28 AM
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  • Hello; the following text is an abstract of the public report presented in 1996 by Virologix. The text says explicitly that an HTLV vaccine was found and tested on animals, with the result of a 100% immunization. The Company announced trials on humans for the following year, located in Brasil. But meanwhile it was acquired by AccessPharma.The vaccine is said to warrant immunization; but it's reasonable to expect that it would have a curative power too, maybe definitively.Hope and pray that AccessPharma could develop it as soon as possible; or determine that the vaccine is a flop.If there is somewhere a potentially effective treatment - maybe a cure! - for a terrible disease that afflicts and kills millions of persons worldwide and that has no other treatment, no one treatment, wich Right can permit that it remains undeveloped? It sounds like a death sentence.This is a vocation I hope many others will join with.This is a vocation I hope the Health Organizations would care.People are dying, with an unexpressable pain!my Best Wishes, Aldoushttp://www.secinfo.com/dr4ur.91X7.htm#286vSECURITIES AND EXCHANGE COMMISSIONWashington, D.C. 20549________________________________________ FORM SB-2REGISTRATION STATEMENT UNDERTHE SECURITIES ACT OF 1933______________________________ VIROLOGIX CORPORATION(Name of Small Business Issuer in its Charter) DELAWARE 2834 13-3864869(State or Other Jurisdiction of (Primary Standard Industrial (I.R.S. EmployerIncorporation or Organization) Classification Code Number) Identification ….HTLV-II HTLV-I shares many characteristics with the closely related virus HTLV-II.Like HTLV-I, HTLV-II is a retrovirus that binds to mature human T lymphocytes, although there is evidence that it may infect B lymphocytes as well. HTLV-II hasa worldwide distribution due to its modes of transmission, but there are severalareas where it appears to be endemic. These areas principally appear to be isolated populations of Amerindians of Central and South America, where the incidence of seropositive individuals may reach 80%. More generally, however, the prevalence ranges between 2-9% of Amerindians, including native Americans of the southwest United States. One of the leading reservoirs of HTLV-II in the United States and Europe appears to be IVDUs, where, in one study, the incidence of HTLV-II was 16%. HTLV-II predominates over HTLV-I in IVDUs, with HTLV-II responsible for 89-98% of all HTLV infections in this group. In North America, HTLV-II appears to be at least as common as HTLV-I. Like HTLV-I, the modes of transmission of HTLV-II consist principally ofmaternal transmission, primarily through breast feeding, homosexual transmission, and transmission through contaminated blood products, including blood transfusions, transplants, and sharing of contaminated needles in IVDUs. While it is less well characterized than HTLV-I, infection with HTLV-IIhas also recently been associated with HTLV-associated myelopathy. HTLV-II has also been linked to large granular lymphocytic leukemia, the cutaneous T lymphocyte neoplasm mycosis fungoides, and certain autoimmune diseases. In addition, HIV-positive individuals carrying HTLV-II have a significantly increased incidence of AIDS-associated non-Hodgkin's lymphoma and acquired ichthyosis (scaling of the skin) than do HIV-positive patients without HTLV-II. Prevention of Infection and the Role of Vaccination Current knowledge of the modes of transmission of HTLV-I have permittedthe use of public health measures to reduce the rates of infection in some areas, e.g. by elimination of breast feeding and safe sex practices. However, this is not feasible in some instances and such interventions are unlikely to succeed in the long term, particularly in developing countries. Effective vaccines against HTLV-I and HTLV-II would be of significantclinical value. The viruses are widespread; HTLV-associated diseases can be life-threatening, debilitating and incurable; and the risk of developing a serious clinical disease (about 2-5%) is comparable to other viruses for which vaccines are widely used. Furthermore, the development of such vaccines is scientifically and technically feasible. The feasibility of such a vaccine is rooted in several findings. Perhapsmost importantly, there appears to be natural immunity to HTLV-I infection in humans, as evidenced by the placental transmission of maternal antibodies to thefetus with subsequent protection of the newborn from viral transmission in the mother's breast milk. Preliminary studies in animals have also demonstrated thatprotection can be achieved by appropriate immunization strategies. Another critical point is that the viral components which appear to be the leading vaccine candidates remain genetically and serologically stable in the population, unlike those on HIV. Indeed, the genomes of all the strains of HTLV-I isolated thus far in Japan, Africa, the Caribbean, and Central and South America are 98 percent identical. Hence, a vaccine generated against one strain of HTLV-I will likely protect against the majority of strains, although there can be no such assurance. The Company believes that the similarity between HTLV-I and HTLV-II make the development of an effective HTLV-II vaccine equally feasible. The Company's Vaccine Candidates for HTLV-I and HTLV-II On the basis of the information described above, investigators at Rockefeller have developed vaccine candidates for HTLV-I and HTLV-II using recombinant DNA techniques. The leading candidates for vaccine formulation against HTLV-I infection are the surface glycoproteins. These proteins are so named because of the carbohydrates, or sugars, which the virus has attached to the proteins in strategic places. The Company has genetically engineered a novelversion of one of these glycoproteins in a manner which produces large, previously unattainable quantities of the desired protein in either a glycosylated (with sugars) or non-glycosylated form. Both forms are easily purified for use as a vaccine. Initial studies with rabbits immunized with a modified non-glycosylatedform of the HTLV-I glycoprotein have demonstrated 100 percent protection againstchallenge with HTLV-I-infected cells. While the glycosylated forms more closely resemble the glycoproteins naturally produced by the virus, these results indicate that glycosylation is not required to confer protection. Nevertheless, the Company is continuing to evaluate both glycosylated and non-glycosylated vaccine candidates for HTLV-I. The Company's vaccine candidate for HTLV-II is based on a modified glycosylated form of the HTLV-II glycoprotein. This subunit vaccine was recentlytested in a rabbit model of HTLV-II infection. In the studies, 22 rabbits were immunized at 0, 4, 8 and 16 weeks and were challenged with virus at 18 weeks or 6 months. In all 22 animals, the vaccine elicited high antibody titers and protection against viral infection. Following further animal studies to optimize both vaccines and determineroutes of administration, the Company intends to begin human trials in Rio de Janeiro, Brazil. The Company believes it has identified a suitable population for Phase I safety and immunogenicity trials and expects that these Phase I trials will begin in Brazil in the first half of 1997.
    Anonymous 42789 Replies
    • January 11, 2008
    • 03:49 AM
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  • Maybe it's useful to report details on AccessPharma (that confirm "They also have technology for treating HTLV type I and type II infection"). AccessPharma seem to be the greatest hope for us.Maybe one of the reasons they seem not to be developing the so promising HTLV vaccine is the financial aspect, since the Company is not so big. Best Regards, Aldous (http://www.marketwatch.com/tools/quotes/profile.asp?symb=ACCP)Access Pharmaceuticals, Inc., a Delaware corporation, is a pharmaceutical Company focused on developing both, novel low development risk product candidates, and technologies with long term product opportunities. Together with their subsidiaries, they have proprietary patents or rights to seven drug delivery technology platforms: synthetic polymer targeted delivery; vitamin mediated targeted delivery; vitamin mediated oral delivery; bioerodible cross-linker technology; mucoadhesive disc technology; Hydrogel particle aggregate technology; and Residerm topical delivery. Marketed products are Aphthasol and Aptheal. Access Pharmaceuticals market amlexanox 5% paste, the first U.S. Food and Drug Administration approved product for the treatment of canker sores, under the trade name Aphthasol in the United States. In September 2001, Strakan Limited, their United Kingdom partner, received marketing authorization to market amlexanox 5% paste in the U.K. under the trade name Aptheal. The process to achieve marketing authorization for Zindaclin throughout Europe has been initiated, with approvals in eight European Union countries to date. Strakan began marketing zinc clindamycin in the United Kingdom under the trade name Zindaclin in March 2002. In addition, the Company has acquired the amlexanox patents and technology for the treatment of mucosal and skin disorders, and certain rights to the use of Topoisomerase I inhibitors in the treatment of HIV infection. On July 22, 2002, Access Pharmaceuticals acquired from GlaxoSmithKline the patents, trademarks and technology covering the use of amlexanox for the treatment of mucosal and skin disorders. The Company acquired their viral disease technology through their acquisition of Virologix. They also have technology for treating HTLV type I and type II infection. They acquired a part of this technology through a licensing agreement with the National Institute of Health. The Company's net cash burn rate for the twelve months of 2004 was $750,000 per month. As of March 15, 2005, Access Pharmaceuticals, Inc., had 35 full time employees.
    Anonymous 42789 Replies
    • January 11, 2008
    • 04:13 AM
    • 0
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  • Hi my name is mayleen, my mom was diagnosed with HTLV1 about 2yrs ago and her health has been going down hill ever since she has lost alot of function in her legs due to the disease. She to also had the baclofen pump implanted and tha hasnt done much for her, she is also currently on morphine and ocycodone for the pain.please if any one can contact me for some support and or help with doctors or treatment. i would be so greatful.Hi Mayleen,try with VALPROATE (=valproic acid), a drug for epilepsy: it has been recently tested and it showed very good results with TSP/HAM patients. Ask your physician.good luck, Aldoushttp://bloodjournal.hematologylibrary.org/cgi/content/full/108/12/3801http://www.clinicaltrials.gov/ct2/show/NCT00519181?cond=%22HTLV-I-Associated+Myelopathy%22&rank=4
    Anonymous 42789 Replies
    • January 30, 2008
    • 01:03 AM
    • 0
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  • Hi my name is mayleen, my mom was diagnosed with HTLV1 about 2yrs ago and her health has been going down hill ever since she has lost alot of function in her legs due to the disease. She to also had the baclofen pump implanted and tha hasnt done much for her, she is also currently on morphine and ocycodone for the pain.please if any one can contact me for some support and or help with doctors or treatment. i would be so greatful.HI MY NAME IS ANN, I HAVE BEEN DIAGNOSED WITH HTLV IN 1992?. IN THE LAST 8 YEARS MY SYMPTOMS HAVE GOTTEN WORSE. SOMETIMES I CAN BARELY WALK. I TAKE BACLOFEN 20MG THREE TIMES A DAY. IT HELPS AL LITTLE. I NOTICE WHEN I GET NERVOUS MY SYMPTOMS GET WORSE. DOES OTHER PEOPLE HAVE THAT PROBLEM IT'S REALLY EMBARRASING, PEOPLE LOOK AT YOU FUNNY!! WHEN WAS YOUR MOM DIAGNOSE WITH THIS?
    Anonymous 42789 Replies Flag this Response
  • Dear Ann,Are You HTLV 1 or HTLV 2 positive, or indeterminate? If You are HTLV 1+, have You been diagnosed to be in full-blown Tropical Spastic Paraparesis? Were You actually "asymptomatic" in the first 8 years or did You simply have less severe symptoms than now?I've been recently diagnosed HTLV 1+; I do not match the TSP parameters, because my haematological and enzymatic findings are not so much abnormal; but I have a lot of symptoms, including diffuse muscular pain and cramps, expecially at the legs, and gait disturbances, with ataxic walking. I could never talk with other HTLV infected people. I pray You to help me to understand what are my conditions, and what I have to expect. So I should want to ask You to reply here, or to contact me directly at: verecundia1971@gmail.com.With regard to treatment, I've just been told by my physicians to begin a therapy with Depakote combined with another drug, whose I don't remember the name. Didn't You? If not, why?Thank You, and good luck.Albert
    Anonymous 42789 Replies Flag this Response
  • Dear Ann,Are You HTLV 1 or HTLV 2 positive, or indeterminate? If You are HTLV 1+, have You been diagnosed to be in full-blown Tropical Spastic Paraparesis? Were You actually "asymptomatic" in the first 8 years or did You simply have less severe symptoms than now?I've been recently diagnosed HTLV 1+; I do not match the TSP parameters, because my haematological and enzymatic findings are not so much abnormal; but I have a lot of symptoms, including diffuse muscular pain and cramps, expecially at the legs, and gait disturbances, with ataxic walking. I could never talk with other HTLV infected people. I pray You to help me to understand what are my conditions, and what I have to expect. So I should want to ask You to reply here, or to contact me directly at: verecundia1971@gmail.com.With regard to treatment, I've just been told by my physicians to begin a therapy with Depakote combined with another drug, whose I don't remember the name. Didn't You? If not, why?Thank You, and good luck.AlbertHello Albert, If you still reading these.How are you doing now? And what kind of theatment experiences you have. The reason I'm asking is the fact that where I live htlv is practically inexistant so doctors have no experience in treating/giving me information.I am assuming my symptoms are due to developing TSP since the person I got it from is completely asymptomatic currently and has been for years.I would really like to hear your experiences. Or the experiences of anyone else around here. I understand everyone is affected in different ways and I am preparing for the worst but would love to hear how yours situation developed and wheter you have any advice on treatment.Hope this is not too much of an inconviniace, thanks in advance and all the best-Jan
    Anonymous 42789 Replies
    • August 29, 2009
    • 00:51 PM
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  • Hi, anyone with Hltv, I have not found info about this and my doctors dont know either but have any of you had lipoatrophy, I mean fat loss in weird places as a symptom like fingers, palms, joints, face, tip of the nose??, genitals etc. My fingers are just getting thinner and thinner and same with my hands wrists, feet, toes, ankles and face.Also I believe I have developed Sjogren syndrome as a symptom, dry eyes, mouth and recently I cant sweat anymore. Familiar to any of you?
    Anonymous 42789 Replies
    • August 31, 2009
    • 09:30 PM
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  • HI MY NAME IS ANN, I HAVE BEEN DIAGNOSED WITH HTLV IN 1992?. IN THE LAST 8 YEARS MY SYMPTOMS HAVE GOTTEN WORSE. SOMETIMES I CAN BARELY WALK. I TAKE BACLOFEN 20MG THREE TIMES A DAY. IT HELPS AL LITTLE. I NOTICE WHEN I GET NERVOUS MY SYMPTOMS GET WORSE. DOES OTHER PEOPLE HAVE THAT PROBLEM IT'S REALLY EMBARRASING, PEOPLE LOOK AT YOU FUNNY!! WHEN WAS YOUR MOM DIAGNOSE WITH THIS?hi ann so sry to have taken so long to respond back...plz email me so that we can contact each other...mayleenjones@yahoo.com
    Anonymous 42789 Replies Flag this Response
  • Any news on this, or are they still stalling on a vaccine?
    AlvinBishop 36 Replies Flag this Response
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