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| ·Remembering Leslie Wermers. One year ago today. | 2009-11-02 20:10:50 | | ·Lyme disease patients mourn passing of well known doctor | 2009-07-01 04:00:00 | | ·All she lost: My sister's battle with Lyme disease | 2009-05-19 04:00:00 | | ·Laura Treanor, 19, Lyme disease not ruled as cause of death | 2009-05-07 04:00:00 | | ·Lila Star Smith Harms, 25, dies from complications of Lyme disease | 2009-05-05 04:00:00 | | ·Lyme Disease Patients Loses a Hero and Friend | 2008-11-16 19:57:38 | | ·Nancy L. (Scully) Strayer: March 20, 1946 - March 12, 2008 | 2008-04-12 04:00:00 | | ·Bite from tick on holiday led to death leap | 2008-04-11 06:49:39 | | ·Rugby great, Mike Gregory, loses his battle with Lyme disease | 2007-11-24 23:51:00 | | ·Missouri teen, 15, dies from Ehrlichiosis | 2007-09-04 04:00:00 | | ·Steven F. Wells, 45, dies after battle with Lyme disease and ALS | 2007-08-14 07:03:39 | | ·Bruno C. Malvezzi | 2007-07-31 21:06:47 | | ·In loving memory of Dr. Edward McNeil | 2007-07-24 19:45:00 | | ·Lyme disease is a growing problem, Britteny Gallgher, Kansas City, MO | 2007-05-24 04:10:00 | | ·Lyme Disease Skyrockets In Maryland | 2007-05-23 04:00:00 | | ·C. Peter Thomas, 46; Sound Engineer | 2007-05-21 04:00:00 | | ·Jimmy Duarte, gifted musician, charismatic islander, dies at 70 | 2007-05-17 15:12:03 | | ·Obituary: Lyme Disease Advocate Karen Johnson ''Rose'' Rose, 1947 - 2007 | 2007-04-30 22:50:17 | | ·BETH'S QUEST: Family crusades against Lyme disease | 2007-04-29 04:00:00 | | ·Tick kit distribution aimed at heading off Lyme disease | 2007-04-28 12:40:00 | | ·Letter to the Editor: In Memory of Lyme Advocate ''Rose'' | 2007-04-26 11:00:03 | | ·Lyme Advocate ''Rose'' Succumbs to Lyme Disease | 2007-04-19 18:25:19 | | ·Body of Missing Woman with Lyme Disease Found | 2007-04-14 21:46:32 | | ·Michael Coers won Pulitzer Prize | 2007-03-21 10:00:43 | | ·E STREETER IN LYME 'SUICIDE' | 2007-03-19 12:33:30 | | ·Lost to Lyme Lyme disease facts | 2007-03-19 04:00:00 | | ·Musician remembered as battler against Lyme disease | 2007-03-19 04:05:00 | | ·Maine Musician Bill Chinnock Dies | 2007-03-08 13:45:18 | | ·Obituary - Eric von Schmidt - Singer and painter was in Dylan's circle | 2007-02-27 11:00:00 | | ·JAMES P. KOCH | 2007-02-22 00:53:49 | | ·Andrew Spielman, 76, Expert on Insect-Borne Diseases, Dies | 2006-12-26 04:00:00 | | ·Martin Frank Dumke | 2006-11-29 04:00:00 | | ·Bill Reynolds: For QB Coen, tragedy lies beneath the surface | 2006-10-29 04:05:00 | | ·Coen plays on without No. 1 fan | 2006-10-17 04:00:00 | | ·Librarian was dedicated to students, family | 2006-09-19 17:02:58 | | ·TORMENT OF BRAIN BUG PROF - Alasdair Crockett | 2006-09-19 13:43:35 | | ·Widow of Lyme disease victim appeals for help | 2006-09-18 22:44:57 | | ·Professor commits suicide after catching dementia from tick bite | 2006-09-17 22:17:12 | | ·Tick talk: Family blames member's death on tickborne illness | 2006-08-21 04:00:00 | | ·Death of York PA area doctor due to Lyme and ALS | 2006-04-29 20:40:02 | | ·Emmy-winner Scott Brazil dies of ALS and Lyme disease at 50 | 2006-04-22 11:37:59 | | ·Kym Cooper- Dead Woman's Own Letter Tells Her Lyme Disease Story | 2006-02-05 14:08:53 | | ·Kym Cooper - Worn down by Lyme | 2006-01-22 01:56:26 | | ·Kym Cooper, 1968-2006, After long battle with Lyme disease | 2006-01-19 13:51:02 | | ·Tribe leader Francis mourned | 2006-01-14 18:22:58 | | ·Easton mourns former selectman after fatal accident | 2005-12-17 13:04:17 | | ·Educator, union leader dies from complications of Lyme disease | 2005-12-08 09:25:32 | | ·'A TERRIBLE WAY TO GO' | 2005-10-22 14:39:56 | | ·Leo Bogart, R.I.P. (1921-2005) | 2005-10-21 15:55:28 | | ·Leo Bogart, 84, Sociologist Who Studied Role of Media in Culture, Is Dead | 2005-10-21 15:46:44 | | ·Passages: Pat Pepper | 2005-10-10 01:11:11 | | ·Man loses battle with Lyme disease | 2005-10-09 10:37:43 |
[ Read Obituaries ] | |
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Progressive MS Diagnosis Really Lyme Disease in Johnson County, Kansas Posted on: 05-15-2008 @ 03:45 pm |
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Today my regular doctor told me about another patient of his who had been diagnosed with progressive MS last year and was facing a future in a wheel chair. The doc said he just saw this patient, and he was functioning again thanks to a Lyme diagnosis and antibiotic treatment beginning in January by Dr. Carol Ann Ryser, of Independence, Missouri.
The male patient in fact told this nonLyme doc that Dr. Ryser "saved his life".
My primary doc passed this on to me, along with the protocol that so vastly improved the "MS" patient's health, Levaquin and Zithromax for a month. (I know of patients Dr. Ryser has treated for years with IV therapy, so this man was lucky to respond so quickly. As we are all learning, responses vary.)
The amazing part is that this MS patient turns out to be the same case my primary doc cited when he sent me to a second neurologist last year, the same neurologist who diagnosed this male patient with MS.
A little before I crashed in June 2007 with obvious neurological issues, this mystery male patient had presented symptoms to the primary physician we share who first referred us both to the same neurologist who ruled out MS or carpal tunnel (his favorite although pains were in both arms and legs) for me, as he apparently did for the mystery male patient. I had one lesion on my brain, and the first neurologist used the term "pre-MS" and basically said to wait for the confirming second lesion. This was Gordon Kelley of Overland Park, Kansas.
As I later learned, Dr. Kelley's information was incomplete because I did not have MRI's of my full CNS (central nervous system), 3 sections of the spine plus the brain, so it was possible I had a lesion on the missing cervical (neck) section of my spine. I told Dr. Kelley that I thought I had Lyme, but he said we don't have Lyme here. Thanks to the negligent health department, doctors did not know Lyme is here because they never declared the county or the surrounding counties endemic.
My primary doc sent me to the second neurologist, Vernon Rowe of Lenexa, KS, because the first neurologist had also cleared the mystery male patient of MS but Dr. Rowe ran more tests and diagnosed MS for him.
Dr. Rowe ran my missing cervical MRI and repeated the brain MRI, but found no more lesions. I chatted up a lady in the waiting room who had been diagnosed with MS because he did find a second lesion on her neck/cervical spine and did a spinal tap (not looking for spirochetes or protein bands for Lyme). Perhaps the mystery male patient had a second lesion that Dr. Rowe found, hence his diagnosis. I realized during this process that the diagnostic standard for MS is 2 lesions on the CNS, neurological problems, and a spinal tap.
I also told Dr. Rowe that I thought I had Lyme, but he called it "pre-MS" again with no treatment other than to wait for the second lesion. He did notice that I had a left eyelid droop (which went up after drooping for 7 months after a Z pack for a sticky lung in October). Dr. Rowe did not believe we could have Lyme in Kansas because the health department had never informed doctors or the public that NE Kansas is endemic for Lyme disease.
Like me, the mystery male patient whose health paralleled mine during treatment by the same primary physician last year also figured out that he needed to take his health care into his own hands.
Perhaps, like me, he learned that the ELISA is worthless as a screening test and should be eliminated in favor of the Western Blot. He got himself to a Lyme literate doctor and turned his life around. With an MS diagnosis he would have been denied antibiotics and left to deteriorate.
How often is MS the diagnosis when the patient could respond to antibiotics and treatment for Lyme disease? This is a very serious omission and starts with a health department that has not given information to doctors that Lyme is endemic here because we have Bb infected ticks.
How can IDSA docs deny "expensive antibiotic treatments" when the result is people whose lives are ruined or cut short by their arrogance? Antibiotics should at least be offered as a trial before making a diagnosis of MS or ALS or lupus, and the Western Blot, not the ELISA, is the test to run before any elimination of Lyme disease as a suspect.
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Last updated on 05-17-2008 @ 11:54 am
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Comment By: kam (Posted on 05-15-2008 @ 08:51 pm)
Comment: Hi, Would you mind going through and spacing your blog. It more readable to some of us.
And your blog looks very interesting, I would like to read it. |
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Comment By: JennyScott (Posted on 05-16-2008 @ 03:03 pm)
Comment: Yep - I've gatta tell ya - Dr. Ryser is the bomb when it comes to knowing Lyme Disease inside and out. I live in Chicago but have been her patient for 3 years now. Stayed in KC 8 months last year and 6 months this year if I leave according to plan. I just wish they could clone her and put a couple Dr. Ryser's in every city because we all know darn well that the number of people diagnosed with like or a co-infection is going to sky-rocket over the next couple years.
I have seen miracles walk out of her clinic and that is why I will forever keep the faith.
All love,
Jenny |
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Comment By: CarolD (Posted on 05-31-2008 @ 01:54 pm)
Comment: A woman in my church has MS and I have talked to her about taking the Lyme test. She did is one years ago and doesn't want to do it again. She sufferes so much. She walks with a cane and can barely function. I wish she would take the western blot and send it to Igenex. I want her to read stories like these but she is so mentally shut down. She may have MS, people do but I would do everything I could to rule out Lyme. This is a great finding. Thanks |
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Comment By: kansasdenies (Posted on 06-01-2008 @ 01:56 pm)
Comment: I understand "shut down". I don't understand doctors who make such an important diagnosis as MS eliminating Lyme with a test as meaningless as the ELISA. When the federal government studied the arthritis cases in Lyme CT in the '70's, they tested patients' blood every 2 weeks, which none of us get, and used the highest results. I am not even sure if these patients tested on 5 out of 10 bands at once or cumulatively, but that is what we are stuck with. Even if the WB shows "only" 41, the DNA of the spirochete, and one other antibody band, that suggests that antibiotics should be tried. This is an antibiotic responsive disease, as my PCP's other patient and I have discovered. If symptoms clear up or abate in response to antibiotics, it's a bacteria! I pray that you can reach your friend at church. |
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Comment By: kansasdenies (Posted on 03-09-2009 @ 04:33 pm)
Comment: In re-reading Dr. Joseph Burrascano's 2008 update of Lyme disease guidelines, I note that he recommends Levaquin to treat bartonella, or BLO's (bartonella like organisms), pp.24-25.
Dr. Burrascano's second drug of choice for Bartonella is rifampin if the levaquin is not tolerated.
It is interesting that my PCP's other KC/Johnson County, KS area patient had a dramatic improvement to the Levaquin/azithromycin treatment, which may have been treating Bartonella, another tick-borne illness, as well as Lyme.
On Lymeblog.com news stories is a 12/23/08 posting about an NC State veterinarian who is testing humans for Bartonella with a test he developed to test for dogs. It is entirely possible that Bartonella like organisms transmitted by ticks are in the Midwest as well as North Carolina.
Levaquin may not be tolerated because a newly published warning cites instances when patients have had their achilles tendon snap during treatment. This information did not come up during drug trials but has been documented since by the FDA requiring a warning on prescriptions to discontinue use should tendon pain arise.
Dr. Burrascano cautions treating BLO's before taking Malarone for babesia infections because previous Malarone treatment inhibits the effectiveness of subsequent Levaquin treatment.
The hazard to achilles tendons and the suppression of Levaquin by Malarone first both raise a lot of questions about co-infections and where bacterial infections go to hide. |
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Comment By: kansasdenies (Posted on 04-26-2009 @ 02:20 pm)
Comment: A few months ago I printed off a 55 page copyrighted treatise by Dr. Scott Taylor, a veterinarian from Ames, Iowa. It is titled A Plague of Ignorance Regarding the Ignorance of a Plague and is a result of his research after being undiagnosed with Lyme disease in the early stages.
Dr. Taylor summarizes his research and theories and does not give personal information, but a posted article from the 8/2/03 Des Moines Register under the title Iowans Fear Doctors Overlook Lyme Disease (Multiple Sclerosis Bacteria Arthritis) suggests that a group of Iowans believe that their diagnosis of MS (a viral disease untreatable by antibiotics) was undiagnosed Lyme disease that can be treated with antibiotics.
Dr. Taylor's treatise provides excellent information for analysis and treatment of Lyme disease, and it contains some interesting tidbits. Dr. Taylor listed MD specialties who are ignorant of Lyme and concludes the most ignorant seem to be infectious disease specialists. Amen.
Dr. Taylor also notes that the 2 step screening once "recommended" by the CDC (that "recommendation" dropped in 2008) was originally intended for surveillance of Lyme disease in potentially asymptomatic patients, not for diagnostic purposes in patients with symptoms that are potentially related to Lyme disease. As he notes, the CDC has clearly stated that their surveillance criteria are not intended to be used as a standard for the clinical diagnosis of Lyme disease, yet ignornant health officials and physicians continue to do so.
The Des Moines Register article notes that in 2002 that 42 CDC surveillance level cases were reported by Iowa officials to the CDC. That number has more than doubled in recent history, which does indicate that something is happening in Iowa. Even so, Dr. Taylor and others have had to seek treatment by Missouri doctors.
The Register article quotes Dr. Joseph Brewer, the rare ID specialist who uses ILADS diagnostic standards rather than the CDC surveillance standard for clinical diagnosis. Dr. Brewer is a KCMO physician who treats patients from Iowa who were clearly sick and who got better with antibiotics.
The Register article also quotes Dr. Denny Donnell, the retired Missouri epidemiologist who agreed with Dr. Brewer's stance that it is not only deer ticks but also Lone Star and dog ticks that carry Lyme.
Regarding furious denials by Iowa State University entomology professor Wayne Rowley that Lyme is a critical problem (does it have to be in 100% of ticks analyzed before entomologists decide there is a risk, unlike Russian roulette which is a risk with only one bullet in a chamber?), an online letter to the editor notes that for an "expert to be angered by differing views indicates a closed mind more concerned with his own unwavering and preconceived ideas rather than open mindedly examining other possibilities." Well said.
States where Lyme is relatively uncommon, such as Iowa, Missouri and Kansas, increase risk for patients who are bitten by infected ticks and who go on to develop MS symptoms and even diagnoses because doctors are not provided critical information to make a clinical diagnosis of Lyme.
Dr. Taylor's treatise is partially wrong on one key point: Iowa is not an one of the endemic states or regions labeled by the CDC, as he points out. However, the CDC definition of an endemic area is any county that has had 2 or more cases acquired in the county and confirmed to CDC surveillance standards anytime since CDC surveillance began in 1985. The alternative standard for an endemic county is any county in which infected tick vectors have been analyzed.
By either one of these standards or both, Iowa likely has several counties that are endemic for Lyme disease just as Kansas does. The problem is state health departments not looking at CDC definitions and not coordinating confirmed cases by county and sharing entomologist findings by county which are collected for veterinarians but not physicians. http:///www.cdc.gov/ncphi/disss/nndss/casedef/lyme_disease 2008.htm.
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Comment By: adrite66 (Posted on 08-20-2009 @ 01:23 pm)
Comment: Neurologists are useless when it comes to diagnosing most diseases - this one especially! Someone (who will remain nameless) was diagnosed with ALS and told to go home and die when in fact this person had Lyme disease at the ripe old age of 32. outrageous. |
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