This is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.
Sunday, May 27, 2012
Lyme Disease & Multiple Sclerosis
This is a long read about Lyme disease, but one you don’t want to miss if you have MS/CCSVI.
So you found out you that you have Chronic Cerebro-Spinal Venous Insufficiency . You are fortunate enough to have angioplasty to treat the condition and have gained some symptom relief. Since the diagnosis of Multiple Sclerosis has become blurred with other conditions you might decide to be tested for other diseases just to be sure. After 12 years of progressive MS you find out that you have Lyme disease. How did that happen? You never saw a tick, or bulls eye rash which are two of the main tell tale signs of the disease. Don’t feel bad a high percentage of people with Lyme are certain they never have been bitten by a tick. In retrospect, some remember the black dot on their head and thought it was a piece of bark, or a freckle that they accidently scraped off their ankle.
Though I have written many times about Lyme disease, more people with an MS diagnosis are being tested and found positive for Lyme disease. This is a result of thinking for ourselves and taking charge of our own healthcare. Kudos to us. If you are unsure of the testing process please refer to my link: https://www.facebook.com/notes/linda-rousay/got-lyme-are-you-sure/10150244085504598
How and where to be tested: http://www.lymeinfo.net/support.html
Lyme disease can be easy to treat in some while in others, it can feel like a never-ending battle. Chronic Lyme disease, is a systemic, debilitating condition which persists despite antibiotic therapy. The seriousness of this condition and its resistance to treatment requires an individualized treatment plan. It is widely misunderstood and surrounded by controversy, which causes problems with physicians, friends and family, insurance companies, disability coverage, etc. Lyme can be overwhelming and is often misdiagnosed as MS, fibromyalgia, chronic fatigue syndrome or some other neurological disorder,
There is no established cure for chronic Lyme disease. The response to treatment varies greatly from patient to patient. Many patients find they need to stay on antibiotics long-term for many years. Patients may also need combinations of antibiotics, co-infection treatments, medications for symptoms, and natural therapies. With these treatments some patients experience full recovery. Those who don't are left to continue the search for treatment options.
There are support groups online and in the community can be very helpful. These groups enable patients to learn about new treatment options and to connect with others facing the same uncertainties.
I have to insert a caution here as I always do for people with MS/CCSVI: The use of steroids to treat pain causes widespread concern among patients and physicians alike that steroids can be very harmful to patients with Lyme disease. Steroids suppress the immune system, which can be dangerous with an infectious disease.
More and more people with chronic Lyme disease have other tick-borne illnesses as well. These other illnesses contribute to the difficulty with treatment.
Late stage Lyme Disease (LD) is more severe than early stage, and it's also potentially debilitating. Symptoms of late stage LD can crop up weeks, months or, in some cases, years after a tick bite. Some of the symptoms of late stage LD include fatigue, headaches, sleep disorders, chronic arthritis, joint inflammation in the knees and other joints and memory loss. More severe symptoms include:
• Decreased consciousness
• Numbness and tingling
• Abnormal sensitivity to light
According to the Centers for Disease Control and Prevention (CDC), after several months, approximately 60 percent of people who don't get treatment for the infection will begin to have sporadic bouts of arthritis, with severe joint pain and swelling. The large joints are the ones that are most often affected, particularly the knees.
There are three oral antibiotics that are recommended to treat virtually all the symptoms of LD, including late stage---doxycycline, amoxicillin and ceftin. For joint pain and arthritis from late stage LD, doctors usually prescribe medicine that reduces swelling and pain. If needed, excess fluid can be drained from the affected joints.
What Are the Treatments for Late Stage Lyme Disease Joint Pain? http://www.ehow.com/way_5544059_treatments-lyme-disease-joint-pain.html#ixzz1w5yf9wcK
What Are the Treatments for Late Stage Lyme Disease Joint Pain? | http://www.ehow.com/way_5544059_treatments-lyme-disease-joint-pain.html#ixzz1w5yNrJuF
Lyme is a real disease: http://www.hindawi.com/journals/ipid/2010/876450/
Lyme can be a major pain in the butt when it comes to the medical profession: http://archive.fwweekly.com/content.asp?article=7478
Lyme And Panic Disease: http://www.thehumansideoflyme.net/viewarticle.php?aid=37
Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia
Lyme and the “axis of evil”: http://www.medscape.com/viewarticle/586226
Clinical trials validate the severity of persistent Lyme disease symptoms.
Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients: http://www.ncbi.nlm.nih.gov/pubmed/19268485?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Headaches and chronic Lyme pain: http://www.lymeinfo.net/pain.html
Read one woman’s story of her journey through Lyme disease. http://www.angelfire.com/tx3/RoseWriter/
Inexpensive Drug Appears To Relieve Chronic Pain in Fibromyalgia, MS, Lyme Disease, etc.: http://www.sciencedaily.com/releases/2009/04/090417084002.htm