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| DIAGNOSIS AND TREATMENT GUIDLINES|
|ADVANCED TOPICS IN LYME DISEASE
*************ILADS Evidence-based Lyme Treatment Guidelines
|·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 ]
| U.S. Army, 1983-1996 Lyme Disease Risk Assessments|
One Year Anniversary of Treatment for Lyme Disease
Posted on: 01-08-2009 @ 04:23 pm
I didn't think it would take this long to recover from Lyme disease, but the successes to date have encouraged me that I am on the right track and that I can still beat this given more time and treatment.|
Personal accounts by people who remember getting a tick bite or two astound me because I had nearly 200 tick bites over a 12 year period from 1996-2007. We bought 160 acres of wilderness and overgrazed pasture in Douglas County, Kansas, and I was literally in the field in the process of restoring that property to tall grass prairie.
During that period the deer population accelerated from 1996 when hunting permits were so difficult to obtain that I applied for an owner's permit to ensure getting a tag at all to the beginning of the millennium when any hunters could get tags for up to 5 does at Wal-Mart.
Like many other states, Kansas was too slow to realize that the herd was overpopulating the habitat and that the most effective way to reduce population was to hunt does. The overpopulation is a direct result of reproduction in deer herds not restricted by natural predators or loss of sustenance.
I stayed away from the property in 2008 after falling seriously ill in 2007, but my next door neighbor reported finding ticks in her house and had 6 bites even though she was not physically able to be outside. She even found tiny ticks on morel mushrooms that someone gathered for her and delivered.
Reflecting back, I realize that some mysterious events from 1996-2007 were likely early infections from tick borne ailments. I am not aware of any studies of people who are bitten repeatedly over a period of time by nymph deer and Lone Star ticks, but I was exposed repeatedly and had no idea of the danger because neither Lawrence/Douglas County Health nor KDHE observed the pattern of Lyme incidence in Douglas County and reported it. For example, the left shoulder pain that had no physiological cause and the dizziness I sought treatment for in 1999 were likely early symptoms that eventually went away.
In June 2003 I had severe fatigue for enough time to see a doctor and have 2 negative ELISA's before demanding 200 mg of doxycycyline after my entire right arm was temporarily paralyzed. Funny thing, the fatigue lifted with treatment.
In May 2005, I saw an ophthalmologist on an emergency basis because of the sudden onset of flashing white lights in my peripheral vision. I also complained of a haze of floaters and blurred vision. The white lights subsided in a few days. I learned that I did not have detached retinas, but the floaters and blurred vision did not go away until I got Ceftin in 2008. I didn't associate my eye problem with the next month's issues.
In June 2005 I had severe major joint pain, particularly my neck which ground audibly and which pained me so much that changing position to lie down was excruciating. A negative ELISA again and no data from the health departments that Lyme is indeed in Kansas (ask a veterinarian, I later learned), caused my doctor to change my blood pressure medication 3 times. Eventually, the joint pain subsided but I was severely ill with 2 episodes of 101.5 fever in August, which may have been unrelated but was strange.
In June 2007, I crashed with what seemed like a sudden onset of numbness and tingling in hands and feet, boring in pressure in my left middle back, dizziness and blacking out, shin splints, headache, sweating, and shortness of breath. I reported the loss of cognitive function that my husband had also observed, which caused my pcp to order an MRI which caused me to go to a neurologist with suspected MS.
My good pcp did ask about tick bites, and I'd had at least 20 at that point of 2007 but had another negative ELISA. Dr. Joseph Burrascano writes that Lyme patients seroconvert after treatment with antibiotics, and that happened with me.
My pcp did prescribe 200 mg of doxycycyline in July 2007, a dosage safe enough that it is prescribed for years for management of acne, when I requested it, suspecting numerous tick bites as the likeliest cause of my maladies. After 5 weeks with no improvement, I read online that 300-400 mg of doxycycline is recommended for chronic infection. My pcp prescribed 400 mg in mid August 2007 and within days my energy level bounced back and cognitive function began to return to former levels (measured by sudoku puzzles in a range of difficulties).
IDSA guidelines would have prescribed 200 mg for that same period and dumped me off the deteriorate neurologically with no further treatment on the theory that my malady was not Lyme. Two neurologists discussed the possibility of pre-MS with me at that point.
My pcp told me in mid 2008 that another patient whom he was treating at the same time I was having problems in 2007 and who was actually diagnosed with progressive MS, but this patient referred himself to an LLMD and after being treated with Levaquin and azithromycin for Lyme recovered enough to no longer need a wheel chair.
In early fall 2007, after 3 weeks on 400 mg of doxycycline, I shared online information with my pcp about taking the Western Blot without a positive ELISA and got the test. Amazingly, the WB showed old infection (IgG) of bands 41, the spirochete itself, and 23, one of the CDC specific antibodies. If these 2 bands were found on new infection, IgM, it would have been laboratory confirmation for CDC surveillance purposes of reportable disease, but it was only 2 of the 5 band CDC reporting standard for old infection.
For ILADS diagnosis, this test would have been sufficient for diagnosis and treatment for Lyme disease, but it would be January 2008 before I could get into an ILADS doctor. CDC Lyme disease surveillance definitions clearly state that these government surveillance standards are for case reporting only and not for diagnosis, but IDSA doctrine insists on using government surveillance standards for diagnosis, which is a huge problem for Lyme patients.
The first Lyme research included drawing blood every 2 weeks, and I suspect these repeated draws added up to the numbers the CDC expects on one draw if the patient even gets to that point. Attribution of a set number of bands for old infection, and a specific 2 of 3 bands for new infection seems quite arbitrary and perhaps capricious.
If the ELISA test is accurate as a predictor of Lyme infection, and that is a big if, then it appears as if antibodies, which both the ELISA and WB measure and not the infection itself, appeared on a Western blot test only after 400 mg of doxycycyline for 3 weeks. This WB was from Specialty Labs in Malibu.
Even weirder, when I repeated the WB in late October 2007 after nearly 11 weeks on 400 mg of doxycycline, I tested for band 41 for old infection but suddenly came up with new infection of bands 41 and 18 with no new tick bites or exposure since June. Stonybrook labs in NY initially reported band 41 and "non CDC specific" bands, but did furnish a retest of the sample to give me bands 18 and 66. Band 18 is a CDC specific band, just not a surveillance band for new infection CDC reporting. I reminded Stonybrook labs that I was paying for the test, not the CDC. Why were they confused about whom they were resposible to?
Either the tests are completely bogus or in fact some patients may not test positive for Lyme antibody bands until after they have received antibiotics for Lyme disease. IDSA representatives are fond of citing patients being treated for Lyme who do not test positive for even one band, but these patients would never have been given a trial of antibiotics to determine if they did seroconvert. These tests are also calibrated for only one strain of Lyme bacteria, and there are likely many.
Positive response to antibiotics should be a criterion in Lyme diagnosis and continued treatment, but patients should receive this trial first, a trial prohibited by IDSA guidelines, and with inadequate dosage strength even when IDSA guidelines indicate antibiotic use.
In addition to the WB tests during treatment with 400 mg of doxycycline, my condition also changed over 3 examinations by the second neurologist I was sent to. This neurologist noticed the left eyelid droop that I had also noticed earlier in 2007, even before the onslaught of new tick bites. This eyelid droop lifted, amazingly, 3 days after a Z-pack in late October 2007 for a respiratory issue. My pcp was so impressed that he prescribed some Z packs to get me through the period I had to wait to get into a Lyme literate physician (llmd).
The second neurologist saw me after I had been on 400 mg of doxycycline for less than 10 days. He also observed that I had Bobinski sign, which the first neurologist hadn't even tested for. Bobinski sign is an abnormal response to a stroke on the sole of the foot. Toes should curl under in this test, but an abnormal response of the big toe sticking up instead of down is called Bobinski sign. It is usually indicative of ALS. Oddly, by the second and third visits, after several more weeks on 400 mg of doxycycyline, the clinical notes include the presence of Bobinski sign described as less pronounced than when first observed.
It has taken me a long time to get any toe curl at all when the bottoms of my feet are stimulated. Only my right big toe continues to hold out, but it definitely does not stick up now. The Mayo neurologist said the left foot was "ok" in early December but pronounced the right foot "dubious" indicating to me that improvement was continuing.
So, even before an official diagnosis of Lyme disease by an LLMD, I had significant progress with the 400 mg of doxycycyline and the azithromycin my pcp prescribed on a stop gap basis. My left eyelid droop went up, my dizziness and burning eyes abated during the periods I was on antibiotics, my fatigue lifted as I began to be not just tired but sleepy and slept after azithromycin, and my cognitive function rebuilt. However, I knew I needed more help.
When I saw my LLMD last January 2008, I already had a thick file from Mayo in December 2007 eliminating every disease or condition that they thought could cause my problems. Mayo couldn't explain band 41 on both new and old infections on their WB. Mayo's ID department is strictly IDSA, and Kansas has not notified anyone of the patterns for Lyme disease in the eastern 1/3 of the state, which would be a diagnostic clue.
I might have tested positive for additional antibody bands but had the impression that I shouldn't have been on antibiotics when I took the Western Blot, so I had been off for weeks. By the time I returned home after 6 days of appointments and an intervening weekend, I actually was so dizzy I fell down, but rallied on a Z-pack.
Mayo did document peripheral neuropathy but not what to do about it and eliminated, again, bone cancer. Both my pcp and Mayo suspected bone cancer after the x-rays of my lumbar region, but the lumbar region produces white blood cells. I figure my lumbar is riled up for some good reason. The neurologist at Mayo attributed my strange and random pains to my immune system working and thought I belonged in the ID department. The ID doc thought I belonged in the neurological department because I didn't test CDC surveillance level on the WB, and he had no clue that Lyme is in Kansas.
At any rate, I did not have to take any more tests. The LLMD used the August WB which showed band 41 and one other CDC specific band but could have also used the October WB which did the same thing. I had documented a Jarisch-Herxheimer to the first Z-pack (azithromycin) I took as well as my improvements on antibiotics. Those who think Lyme disease doesn't exist and doctors who treat it are profiteering would be surprised to learn that without tests, my initial visit cost $400 for over two hours. So much for the profiteering theory, which was advanced by the surgeon who charged my insurance company thousands of dollars for my appendectomy. Even with tests on later appointments, that is the highest charge I have had with my LLMD, and visits are scheduled only 3 times annually.
Since starting a course of specific antibiotics, covered in Dr. Joseph Burrascano's Guidelines online, my improvement has been great but not complete. Ceftin cured my blurred vision very quickly and restored color which I didn't even realize had faded. The floaters seem to be fading away. My hands improved earlier, but Rifampin ended the numbness and tingling in my feet, and the chronic shin splints and fasciculations along my shins. Rifampin also eliminated a slight left foot drag when striding and the sense that my legs were not under me.
The strange red posterior heel bands, which are found on older European woman infected with Lyme, have disappeared. I am a 61 year old American female, but the heel bands appeared in early September 2007 shortly after I started 400 mg of doxycycyline. I believe it is ACA (acrodermatitis chronica atrophicans). I never had these purplish red bands until my heels began itching and were so sensitive to pressure that I couldn't dry my feet after bathing for a few days, and then the bands emerged full blown.
The rosacea I was treated for November 2007 (that time my pcp thought I had lupus, my ACA number was going up but then went right back down, and I had a white "wolf" mask for my eyes formed by surrounding redness) has not returned and I am not taking the medication the dermatolgist prescribed for it. The series of small flat red rashes up my shins (got bitten there lots of times) that appeared the same time as the rosacea tested for "inflammation", but have not reappeared.
I am sleeping well and feel well rested. Sleep studies in August and early September 2007 revealed that my brain was waking up on average every 90 seconds, although I looked and felt asleep. The second study, deeper into my treatment with 400 mg doxycycyline, showed fewer brain arousals, and I think the EEG was a measure of brain irritability at the time, soothed by antibiotic treatment. We took a 3 day car trip over Christmas 2008, and my head was not lolling on my chest unconscious as in the past. I do not wake up tired, and I rarely nap during the day.
I look my age. This is a good thing. Maybe there is something beneficial in Lyme bacteria that improves skin. Botulism begets botox treatments which smoothe wrinkles. The ID doctor I saw in September 2007 tested me for scleroderma because I didn't look 60 with my smooth face. Oddly, the hotel clerk the night before good naturedly doubted me when I claimed the senior discount. Another clerk came up, and they both said I looked at least 10 years younger. The Mayo internist, an age mate, who quarterbacked my visit visibly started and also said I didn't look my age when he entered the exam room. People with Lyme complain that others say they look healthy when they feel horrible, and there must be something to it. I looked like death warmed over later in January 2008 on different antibiotics, though. I had a waxy pallor in Florida.
Despite having gained 10 pounds since my Mayo visit when I was merely 15 pounds overweight, my face is lined and my neck crepey. I'll take this as progress. I'll take the weight gain, too. Scleroderma and ALS contribute to weight loss, so they're off the table.
I have 2 continuing concerns that will keep me in the Lyme disease treatment program. I have chronic problems with what I believe to be an infected phrenic nerve, which causes my diaphragm to contract and my windpipe to collapse against my larynx. This means I can't breathe for that duration until the nerve releases the diaphragm. It has lessened in intensity and length on antibiotics but is still a regular occurence.
My other issue relates to weak peristalsis, discovered with a barium swallow in November 2008. It is a neurological abnormality for the involuntary motility of the esophagus to be irregular, and this irregularity could explain past problems with nausea and abdominal pain. The ENT, amazingly, accepted my diagnosis of Lyme disease without skepticism and said he knew it is in the KC area because he knows of infected dogs and horses. He attributed the weak peristalsis (uncoordinated movement of the muscles to move food to the stomach) to infection with Lyme disease.
Sudden, sharp, mysterious pains still occur. Since Lyme bacteria emit a toxin when killed, I have to hope this is my immune system working, as the neurologist at Mayo, Dr. Fealey funny enough, suggested. I take Flagyl intermittently for the cyst form of the Lyme bacteria. I have difficulty tolerating 1/3 of the recommended dosage, which I take as a sign it is having an effect.
Overall, my first year of treatment has been a huge success, but I am not completely cleared up.
Last updated on 04-19-2009 @ 09:24 pm
Comment By: lymielizzie |
(Posted on 01-08-2009 @ 04:43 pm)
Comment: Wow what a story. You have been through the ringer! Sounds like things are improving thank goodness. I learned a lot from your post. Never heard of Bobinskis or some of the other random ailments that popped up. It never ceases to amaze me all the co-infections and ailments lyme patients get. Its daunting!
As far as the IDSA guidelines, at least the word is getting out and there are good people working to get them changed and they will be changed. They are blatantly outrageous and darn near crininal. If you get a chance to see the documentary Under Our Skin, you will be relieved by that films brilliant account of the facts regarding the IDSA guidelines. Hopefully the impact of these facts presented in this most powerful documentary will make for swift changes. We have hope!
Comment By: kansasdenies |
(Posted on 01-08-2009 @ 04:50 pm)
Comment: I don't think the IDSA guidelines are darned near criminal; I think they are criminal. I do not share your confidence that they will be changed because they are so convenient for rationing a government run health plan.
I have just read "Beating Lyme" by Constance Bean. She makes a very good point. If people are sick with a strange litany of problems and those problems keep shifting, suspect Lyme.
I do not feel I have been through the wringer. I know there are many people who have had a much more resistant infection and more to recover from. I feel grateful to have found a port in the storm.
Comment By: kansasdenies |
(Posted on 01-09-2009 @ 02:53 pm)
Comment: I knew I had had frequent tick bites. What I didn't know is how unreliable the Lyme lab work is and that in fact Kansas is endemic for Lyme disease.
Occam's razor purportedly instructs to choose the simplest single cause for an event. How could people ignore all those tick bites in coming up with answers?
The denial was so incredible that no one asked if I had been anywhere where I could have contracted Lyme that is known to be endemic. (I had, but I know where I was bitten.)
Thank goodness for the internet.
Comment By: carold |
(Posted on 01-09-2009 @ 07:00 am)
Comment: I too have learned a lot from your story. You've had symptoms that I have never heard of either. You have been through a lot and it is criminal that you had to go to so many doctors and have so many tests just to get to the real cause of your illness. I'm glad that you have improved as much as you have and hopefully in 2009 the rest of your issues will be resolved.