WELCOME TO LYMENET
Are you looking for a doctor to assist you with Lyme or other tick borne infections?
If so, suggestions are posted below to assist you in your search. If you would like to have
general information about tick borne diseases, please skip down to the next post.
To find a LLMD (Lyme Literate MD)
Go to the Seeking a Doctor section here at Lyme Net and post a message mentioning
your area in the title of the post. If you get no reply, please post another request in the Medical Section and ask for help. OR...
If you are looking for Lyme Literate Medical Doctors you can write to (email) the
person who helps find patients a Lyme doctor. She is at the Lyme Disease Association. Her name is Kim Uffleman and her email address is:
Please let Kim know where you are located (town, county, state). She will make every
effort to reply with up to 4 LLMD's that are as close as possible. Please put the name of
your state in the subject line of the email.
OR....
The Lyme Disease Association has a toll free line (1-888-366-6611) you can use to
request a LLMD referral.
GOOD LUCK!
[This message has been edited by Tincup (edited 02 January 2004).]
NOTE- It is time for an edit and update for this post. Sorry some of the older links are not working. I will re-do the site soon!
When posting at Lyme Net, please break up your post (see this example) with frequent
spaces so the folks with neurological problems or eye problems can read them easier.
You will most likely get more replies that way. Thank you!
Below are direct links to basic sites about Lyme and other tick borne infections.
We have also posted a few articles that may interest you. Please let us know if you have
any questions or if we can help.
Notes:
1. Most members at Lyme Net are not doctors and they are not providing medical advise.
They may make suggestions or share their personal experiences on non-emergency
topics. If you have an emergency or need the advise of a doctor, please go to the nearest
hospital or contact your physician.
2. We only post doctors names on the board if we have their permission. Since Lyme
Net does not have people who are paid to respond to posts, all answers come from
volunteers who will try to assist you as they are able. It may take a while to get responses so please understand any delays. We hope you will feel free to respond to others while you are on the road to recovery. It would certainly help lighten the load of others here and we would appreciate it. There is bound to be an experience you can share with someone that will help them with their questions, if nothing more than letting someone know they are not alone and you care.
3. If you need a specific person to respond to your questions, please use their name in the title so they have a better chance to see your post.
4. To find information about most, if not all topics previously discussed here, you might try doing a search. Look at the TOP of your screen for a tiny button that says SEARCH.
Once you click on that button a new screen will appear. Fill out the information
requested and submit the topic. Since most topics have been discussed in the past, you
should pull up some very informative posts. If you can?t find the answers you need
through a search, please feel free to ask folks on the board by starting a new post.
We all hope you are on the road to recovery soon!
LINKS FOR NEW MEMBERS:
What You Should Know About Lyme Disease: http://www.ilads.org/lyme_flyer.htm
International Lyme and Associated Diseases Society (ILADS) home page: http://www.ilads.org/
ILADS- DIAGNOSTIC HINTS AND TREATMENT GUIDELINES
FOR LYME AND OTHER TICK BORNE ILLNESSES
JOSEPH J. BURRASCANO JR., M.D. Fourteenth Edition, November, 2002 http://www.ilads.org/burrascano_1102.htm
Wilder Network- http://www.wildernetwork.org/index.html
SYMPTOMS:
Downloadable summaries of peer-reviewed, scientific literature in PDF (Adobe Acrobat
Reader) format are available at the following website. The topics covered include:
documented symptoms of Lyme disease, persistent infection despite antibiotic treatment,
seronegative Lyme disease, and a collection of photographs and quotations on the cystic
form of the Lyme disease bacterium. Click below at Cheryl?s site:
Cheryl's Lyme Info (Lyme files): http://www.lymeinfo.net/lymefiles.html
When to Suspect Lyme Disease: http://cassia.org/essay.htm
Lyme Time You Knew: http://flash.lymenet.org/ubb/Forum1/HTML/005804.html
LYME TESTS:
False negative Lyme tests: http://www.ilads.org/position.htm
Western Blot Bands: http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt
Various strains of Bb: http://www.pasteur.fr/recherche/borrelia/Borreliaspecies.html
LABS for Lyme and co-infection testing:
ARTICLES AND SITES OF INTEREST:
The Sensible Pursuit of Answers, by
Dr. Kenneth Liegner
The Complexities of Lyme Disease: http://www.lymealliance.org/research/grier/grier_1.php
Lyme Disease Audio Network: http://www.lymediseaseaudio.com/
Lyme Disease Association: http://www.lymediseaseassociation.org/
CHRONIC LYME:
Persistence or relapse of Lyme disease: http://www.geocities.com/HotSprings/Oasis/6455/persistence-links.html http://www.geocities.com/HotSprings/Oasis/6455/persistence-special-abstracts.html
THE MISDIAGNOSIS OF LYME:
Lyme Misdiagnosed as: http://www.geocities.com/lymeart3/lyme-misdiagnosed-as.html
Lyme and Fibromyalgia: http://www.geocities.com/lymeart3/fms-index.html
Lyme and Lupus: http://www.geocities.com/lymeart3/lupus-index.html
Lyme and MS: http://www.geocities.com/lymeart3/ms-index.html
Lyme and Heart: http://www.geocities.com/lymeart3/heart-links.html
Alligator Pit: http://flash.lymenet.org/ubb/Forum3/HTML/003909.html
OTHER INFORMATION:
Understanding Abbreviations used on Lyme Net-
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html
Herxing: http://flash.lymenet.org/ubb/Forum3/HTML/000247.html http://www.x-l.net/Lyme/abstracts/herx/herx.collection.html http://flash.lymenet.org/ubb/Forum1/HTML/000638.html
Yeast: http://flash.lymenet.org/ubb/Forum1/HTML/001199.html http://www.panix.com/~candida/ http://www.candida-yeast.com/
Neuropsychiatric Lyme: http://x-l.net/Lyme/Fallon95.htm http://www.mentalhealthandillness.com/tnaold.html http://www.mentalhealthandillness.com/lymeframes.html
Sexual transmission: http://flash.lymenet.org/ubb/Forum1/HTML/004469.html http://flash.lymenet.org/ubb/Forum1/HTML/000909.html http://cassia.org/library/Jama_May15,1996_mednews&perspect.htm
Neurotoxins: http://www.chronicneurotoxins.com/
Neurological problems:
Chiropractic Neurology Site
Chiropractic Neurology Referral Site to locate a doctor near you: http://dendrites.com/contacts/dacnb_1.html
Rife information: http://ns2.rt66.com/~rifetech/ http://www.rifetechnology.com
ICHT therapy: http://flash.lymenet.org/ubb/Forum1/HTML/009766.html
LYME RESEARCH STUDIES:
Lyme project- http://www.lymeproject.com/Our_research/How_to_participate/Open_clincial_trials.htm
Dr. Brian Fallon-
Study of Chronic Lyme Disease
SPECT Imaging of Chronic Lyme Disease vs Other Disorders
Developmental Delay and Lyme Disease in Children-Children with Lyme Disease &
Autistic Spectrum disorders age 2-17 http://www.columbia-lyme.org/flatp/resstud.html
COINFECTIONS:
Dual Infection: http://www.niaid.nih.gov/publications/dateline/0996/page3.htm
Babesiosis http://www.igenex.com/tickset1.htm http://flash.lymenet.org/ubb/Forum1/HTML/001624.html http://flash.lymenet.org/ubb/Forum1/HTML/003767.html http://x-l.net/Lyme/abstracts/98.human_babesiosis.htm http://flash.lymenet.org/ubb/Forum3/HTML/000677.html
Ehrlichiosis: http://www.geocities.com/HotSprings/Oasis/6455/ehrlichiosis-links.html#basic http://www.vetmed.ucdavis.edu/VBDP/granulocytic/Relate-W.htm http://www.cdc.gov/ncidod/EID/vol2no1/walker1.htm
Rocky Mountain Spotted Fever: http://www.astdhpphe.org/infect/rms.html http://flash.lymenet.org/ubb/Forum1/HTML/002027.html http://flash.lymenet.org/ubb/Forum1/HTML/003351.html http://flash.lymenet.org/ubb/Forum1/HTML/001999.html
Bartonella: http://www.geocities.com/HotSprings/Oasis/6455/bartonella-links.html http://flash.lymenet.org/ubb/Forum1/HTML/008362.html
LYMENET MEMBERS SITES:
Lyme Disease Page- Matthew Goss http://www.matthewgoss.org/lyme.html
Kent's story (Troutscout) http://www.ildf.info/
Wild Condor's site- http://www.geocities.com/wildcondor2/wildcondor.
Rainmaker's site- http://flash.lymenet.org/ubb/Forum1/HTML/017911.html
Tick pictures: http://www.ent.iastate.edu/imagegal/ticks/
Rash pictures: http://www.lyme.org/gallery/rashes.html http://www.lyme.org/gallery/gallery.html
Insurance: http://www.geocities.com/HotSprings/Oasis/6455/insurance-links.html
Free or reduced priced medicines: http://flash.lymenet.org/ubb/Forum1/HTML/004031.html
Lots of links on Lyme Disease: http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html
POLLS- PLEASE RESPOND
Lyme Poll: http://flash.lymenet.org/ubb/Forum1/HTML/000323.html
Antibiotics Poll: http://flash.lymenet.org/ubb/Forum1/HTML/000465.html
Low Temperature Poll: http://flash.lymenet.org/ubb/Forum1/HTML/001459.html
Hypothyroidism Poll: http://flash.lymenet.org/ubb/Forum1/HTML/014730.html
Do You Recall Bite or Rash Poll: http://flash.lymenet.org/ubb/Forum3/HTML/005612.html
How you chose your screen name Poll: http://flash.lymenet.org/ubb/Forum3/HTML/003590.html
Worst lines by a doctor: http://flash.lymenet.org/ubb/Forum1/HTML/009785.html http://flash.lymenet.org/ubb/Forum1/HTML/001731.html
Where You Got Lyme Poll: http://flash.lymenet.org/ubb/Forum3/HTML/006509.html
Diagnosed With Lyme and/or ?: http://flash.lymenet.org/ubb/Forum1/HTML/001731.html
Cost of Lyme: http://flash.lymenet.org/ubb/Forum1/HTML/009785.html
Lab test results: http://flash.lymenet.org/ubb/Forum1/HTML/012899.html
INFORMATION FOR YOU:
To get Lyme Disease Information By Email: http://groups.yahoo.com/group/lymeinfo/
New Yorkers, please see: http://www.lymeinfo.net/newyork.html
[This message has been edited by Tincup (edited 30 October 2004).]
Med Clin North Am 2002 Mar;86(2):341-9, vii.
LATE AND CHRONIC LYME DISEASE- Sam T. Donta, MD* Prof. of Medicine, Divisions of
Infectious Disease and BioMolecular Medicine Director, Lyme Disease Unit Boston University Medical
Center, Boston, Massachusetts Corresponding author for proof and reprints: Sam T Donta MD Boston
Medical Center 650 Albany Street-8th floor Boston MA 02118 (617) 638-6017 (617) 638-6009 (fax)
[email protected] (email)
INTRODUCTION- Following the introduction of Borrelia burgdorferi into the skin by an infected tick, the
organisms begin to spread both locally and systemically. Several days typically elapse before the appearance
of the first sign of infection, i.e. erythema chronicum migrans (ECM), or other less typical rashes (29). The
rash occurs in fewer than 50% of patients with Lyme Disease (8,10), but the true incidence of Lyme
Disease in the absence of a rash is unknown. The occurence of multiple rashes is indicative of systemic
spread of the organisms. Multiple rashes usually do not occur until 2-4 weeks following the initial tick bite.
This is the same time period during which the organisms are being disseminated to their target tissues and
cells. The incidence of multiple rashes was initially reported to occur in as many as 50% of cases, but has
been much less common in the last two decades, probably because of frequent use of antibiotics.
Approximately 4-6 weeks following the tick bite, the first systemic symptoms (other than multiple rashes)
occur in some patients, usually in the form of "flu" (15). These symptoms include sore throat, severe
headaches and neck aches, and severe fatigue. Rhinitis, sinusitis, and cough are not usually present,
distinguishing this "flu" from other influenza-like illnesses. While the Lyme-flu symptoms can
spontaneously resolve, patients can experience recurrent "flu". Soon after the onset of Lyme-flu,
fatigue, arthralgias and/or myalgias may begin. The arthralgias appear to primarily involve the large joints
(i.e. knees, elbows, hips, shoulders), although smaller joints (e.g. wrists, hands, fingers, toes) may be
involved (29). Some patients may have actual arthritis, often oligoarticular, more frequently in men than in
women. Earlier estimates were that 50-75% of patients who developed late Lyme Disease had arthritis, but
more recent analyses suggest that the incidence of actual arthritis in patients with late or chronic disease is
closer to 25% (33). Neck stiffness is common. The pains are described as severe, jumping from joint to
joint, and may be present for only short periods of time. Pain in the teeth or in the
temporal-mandibular joints is not uncommon. Rib and chest pains occur frequently, leading some
patients to seek care in emergency rooms and urgent care centers for evaluation of possible cardiac disease.
Frequently as well are paresthesias such as burning, numbness and tingling, and itching. Some patients
experience crawling sensations, vibrations, or electric shock-like sensations. Rarely is there any actual
palsy of the affected areas, making this much more of a neurosensory, rather than a motor, disease. In
addition to paresthesias, purely neurological symptoms and signs include headaches, an aseptic meningitis,
facial nerve (Bell's) palsy, and encephalitis or encephalopathy that may be manifested by cognitive
dysfunction, especially short-term memory loss, and psychiatric symptoms such as panic, anxiety, or
depression (14). The aseptic meningitis and Bell's palsy tend to occur within the first few months following
the tick bite, but may also occur as part of reactivation disease (9). Other symptoms may include fevers
(usually low grade, but may be high), sweats (which may be severe), visual dysfunction (described
primarily as blurriness, but can include optic neuritis or uveitis), tinnitus, sensitivity to sounds, or hearing
loss. Shortness of breath, palpitations and/or tachycardia, abdominal pains, diarrhea or irritable
bowel, testicular or pelvic pain, urinary frequency or urgency, dysequilibrium, and tremors are also
common symptoms. Some of the dysautonomia symptoms can be disabling. Rarer symptoms may relate to
panniculitis and hepatitis. Rarely as well are congenital and intrautero infection; when this occurs, it
appears to be similar to toxoplasmosis and rubella, i.e. a primary infection during the first trimester. The
occurrence of optic neuritis or uveitis raises other possibilities such as multiple sclerosis, but can be part of
Lyme Disease. The course of the disease can best be described as persistent, but with periods of worsening
symptoms, often cyclical every few weeks or monthly. Especially disconcerting are persistent symptoms
such as headaches and fatigue that can be exhausting. Some patients are more symptomatic than are
others, which may reflect genetically-determined differences in responsiveness or extent of infection. The
disease does not appear to be progressive or destructive, as with cancer, nor is it fatal, but can be very
debilitating. The incidence of asymptomatic infection has not been adequately delineated. There appear to
be substantial numbers of patients who remain asymptomatic, but reactivate their disease a number
of months or years later, following trauma, pregnancy, a medical illness for which an antibiotic is
prescribed, or other stresses, including psychological stresses (9). The Lyme OspA vaccine has appeared
to reactivate Lyme Disease in a number of individuals who knew, but some who did not know, they had
prior Lyme Disease (11). The mechanisms responsible for the reactivation of the disease have not been
defined, but may include both molecular mimicry and underlying infection.
PATHOGENESIS- The pathogenesis of Lyme Disease remains to be defined. From the available studies, it
would appear that the organisms are trophic for either the endothelial cells of the blood vessels that serve the
nervous system or for the glial or neural cells themselves (4,24,26,31). Accumulating evidence supports the
hypothesis of a persistent infection as the cause of the persisting or relapsing symptoms (26,31).
Whether molecular mimicry is involved in the pathogenesis of some of the symptoms remains more
speculative (18). Although arthritis can occur in Lyme Disease, the organisms can only rarely be found in
synovial tissue. And as many of the arthralgias that occur in the disease do not respond well to
antiinflammatory agents, the disease is more of an infectious neuropathy than an actual invasion of synovial
or bursal tissues.
DIAGNOSIS- The diagnosis rests heavily on the clinical symptomatology. When there are clinical signs,
e.g. rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued.
On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished
from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a
frequent cause of fibromyalgia or chronic fatigue (8,12). Other microbes have been proposed as
causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia,
especially more recently recognized mycoplasma species such as M.fermentans and M.genitalium, but
definitive proof of cause and effect has not yet been established (6, 23). There has been an attempt to
separate "late" Lyme Disease from "chronic" Lyme Disease, the former being manifested by objective signs
of arthritis or neurological disease (32). Some have denied the existence of chronic disease, inferring that
these patients suffer from psychiatric disorders; some have used the term "chronic" to mean post-treatment
disease ("post-Lyme"), assuming that the infection has been treated, and the remaining symptoms are in the
same realm as those patients who have "fibromyalgia" or "chronic fatigue" (27, 30). These assertions are
speculative and remain unproven. That chronic Lyme Disease actually exists, and is likely the most common
form of the disease, is supported by epidemiologic studies demonstrating that 30-50-% of treated and
untreated patients go on to develop a multisymptom disorder typical of, and indistinguishable from,
fibromyalgia and chronic fatigue (1, 28). As with other multisymptom disorders, chronic Lyme Disease is
a clinical syndrome consisting of fatigue, arthralgias and myalgias, and other nervous system dysfunction (7).
Furthermore, the results of treatment studies appear to support the hypothesis that persistent infection
is responsible for the chronic symptoms. It is likely that Lyme Disease will serve as a useful model for
other chronic multisymptom disorders. Whether the pathogenesis of "late" Lyme Disease differs from that of
the chronic form of the disease remains to be established. Routine laboratory tests are usually normal in
Lyme Disease. The ESR is most often normal, distinguishing it from some of the inflammatory disorders
such as rheumatoid arthritis or lupus. Culture of the borrelia is possible early in the disease, usually from
biopsies of the erythema migrans rash; however, most laboratories are not capable of culturing the
organisms. The only currently available useful laboratory tests are the immunologically-based ELISA and
Western blot assays. The recommendation was made in 1994 to have a two-tiered testing system in which
the Western Blot would only be done on ELISA-positive samples (5). The recommendation was based
primarily on the results obtained from patients with arthritis (13), did not take into account the chronic form
of the disease, and was made despite the lack of consistent reproducibility of results between various
laboratories (2, 16). The ELISA has been shown to be an unreliable test in many patients with Lyme
Disease, both in early infection and later disease (8, 10). Part of the reason for the lack of sensitivity of
the ELISA is the use of whole organisms, resulting in a high amount of background absorbance. After
correction for the high background, only a small percentage of positives can be detected. Because Western
blots separate the proteins of the borrelia, specific reactions can be visualized, and more accurate
interpretations of the results made. Over 75% of patients with chronic Lyme Disease are negative by
ELISA, while positive by Western blot (8, 10). Patients with oligoarticular arthritis may be more likely to
have robust IgG responses and positive ELISA tests and IgG Western Blots (13). By Western blot analyses,
the first immunologic reactions in Lyme Disease are to the 41kd flagellar protein, and the 23kd OspC
protein. Typically, at the time of the ECM rash, there will be an IgM reaction against the 23kd and 41kd
proteins, and no IgG reactions. Within the next few weeks, the IgM reactions persist, sometimes
accompanied by less specific reactions against 60kd and 66kd proteins, and IgG reactions are now visible
against the 23kd and 41kd proteins. Thus, in the presence of an appropriate clinical picture, the
immunoreactivity against the 23kd and 41kd proteins appear to be diagnostic of Lyme Disease. Whereas the
41kd protein is not unique to B. burgdorferi, the 23kd protein appears to be unique. Also apparently unique
proteins of B.burgdorferi are the 31kd (Osp A) and 34kd (Osp B) outer membrane proteins, and the 35kd,
37kd, 39kd, and 83/93kd proteins. Reactions to the 31kd proteins are not usually seen until after a year or
more following the onset of disease. Not all patients with symptoms for more than one year, however,
display reactions to the outer membrane proteins. Most symptomatic patients have specific reactions on IgM
Western blots (8,10). With resolution of the symptoms, the IgM reactions disappear or attenuate. IgG
reactivity may continue to be present with resolution of symptoms, but it typically also disappears or
attenuates with successful therapy. There are some patients (20%) who have symptoms, but whose
Western blots are negative (8,10). If the borrelial organisms remain intracellular, with no extracellular
reemergence once established, this could explain the absence of additional or persistent immune responses.
PCR (Polymerase Chain Reaction) is a highly sensitive means to detect microbial DNA or RNA, and it was
hoped that this technique would find an important role in the diagnosis of Lyme Disease. Thus far, however,
despite the specificity of this method, borrelial DNA or RNA has not been reliably detected in the blood,
urine, or spinal fluid of patients with early or later forms of Lyme Disease, findings again supportive of an
intracellular reservoir for the borrelia. It should be possible to develop a better, highly specific ELISA for
Lyme Disease, using recombinant 41kd, 23kd, 31kd and/or 34kd (and perhaps other B.burgdorferi-specific)
proteins. Currently, however, the Western blot assay is the most reliable immunologic test.
TREATMENT- In vitro, B. burgdorferi is sensitive to several antibiotics (20,25). This assumption is
complicated, however, because of the long incubation times needed to determine minimum inhibitory
concentrations (MIC), as the borrelia have doubling times of 20-24 hrs. With these limitations, the results of
a few studies show minimum bactericidal concentrations (MBC) to penicillin of 8ug/ml, ampicillin: 2ug/ml,
tetracycline: 1-2ug/ml, doxycycline: 2ug/ml, ceftriaxone: 0.5ug/ml, cefotaxime: 0.5ug/ml, cefuroxime:
1-2ug/ml, cefixime: 8ug/ml, erythromycin: 0.5ug/ml, clarithromycin: 0.5ug/ml, azithromycin: 0.5ug/ml, and
ciprofloxacin: 4ug/ml. At the time of the first rash, any one of several antibiotics appear to be effective, if
given for 2 weeks, according to several published studies. However, a number of patients so treated
developed subsequent symptoms of arthralgias, fatigue, and paresthesias, with positive Western blots, who
were then successfully treated with longer courses of antibiotics (8, 10). The recommendation at this time,
therefore, is that tetracycline, doxycycline, or amoxicillin be used for 1 month if ECM is the only symptom
of Lyme Disease. Once any other symptoms appear, the treatment of Lyme Disease for only 2-4 weeks
is associated with frequent failures and relapses (8, 10). Our initial experience suggested that a 3 month
course of tetracycline was associated with a higher success rate (8). In patients with symptoms present
for more than six months, the treatment course may need to be more prolonged, or a retreatment
course of varying length may be needed. In patients with symptoms for more than a year, 12-18
months may be needed for complete resolution of symptoms. The rationale for a longer treatment course
is based on extensive observations (8,10), plus the analogy to the longer treatment courses required for
tuberculosis, leprosy, Q fever, and certain fungal diseases. With Lyme Disease, the slow growth rate and
metabolic activity of the borrelia would seem to correlate with the need for longer treatment periods. Once
treatment is initiated for patients beyond the earliest signs of infection, their symptoms frequently increase
during the first several days, or even for the first several weeks of therapy. For patients with preexisting
symptoms of more than a few months, relief of any of their symptoms may not occur until after 4-6 weeks of
therapy (8, 10). Typically, there are short periods of relief, followed by relapsing or migrating symptoms;
with continued therapy there are longer symptom-free periods. Some arthralgias may require 3 months or
more to resolve, and fatigue may be the last symptom to disappear. The preference for tetracycline evolved
because of the large number of failures that were noted in patients who had been on ampicillin and
doxycycline. Patients generally had some response to doxycycline, but it was uaually not complete, nor
long-lasting. Tetracycline may be more effective than doxycycline simply because of the greater dose, i.e.,
100mg of doxycycline twice daily is not equivalent to 500mg of tetracycline three times daily; also,
doxycycline is highly protein-bound, compared to tetracycline, which could limit the availability of free drug
to diffuse into tissues and cells. Some physicians use doxycycline at doses of 300-400mg daily to try to
achieve a successful result. A strict comparison between doxycycline and tetracycline has not yet been made.
Minocycline has also been used by some physicians, with varying success, but faces the same issues of
dosage and protein binding. Of the beta lactams used for the treatment of Lyme Disease, the most
efficacious appears to be ceftriaxone. In limited comparitive trials, cefotaxime appears to be equally
efficacious, and high-dose IV penicillin may also be effective. In early Lyme Disease, oral amoxicillin is as
effective as doxycycline. In later disease, many failures are noted, despite the use of up to 3 grams of
amoxicillin daily, with probenicid. Cefixime would also not appear to be effective therapy. Cefuroxime axetil
has been evaluated only in the treatment of early Lyme Disease, and appears comparable to doxycycline.
Limited reports of its use in later Lyme Disease have not shown it to be efficacious. The role of the newer
macrolides in the treatment of Lyme Disease needs further assessment. Erythromycin has been regarded as
ineffective, despite its good in vitro sensitivities. Azithromycin has been reported to be less effective in
the treatment of early Lyme Disease than amoxicillin (21). Some physicians use clarithromycin and
azithromycin in higher dosages and for longer periods of time, but there have been no reports of greater
success with these drugs than with the tetracyclines or beta-lactams. In our experience, all macrolides are
effective when combined with a lysosomotropic agent, especially hydroxychloroquine (see below) (10). In
evaluating the possible factors, it would appear that antibiotics that can achieve intracellular concentrations
and activity are the most efficacious drugs. The results of studies in Klempner's laboratory using a tissue
culture model of borrelia infection demonstrated that ceftriaxone was incapable of eradicating intracellular
organisms (17); similar experiments in Raoult's laboratory using an endothelial cell model demonstrated that
tetracycline and erythromycin were effective, but beta lactam antibiotics were not (3). These results are in
line with our experience that the tetracyclines and macrolides achieve the greatest success. In contrast to
beta lactams, antibiotics of the tetracycline and macrolide classes are capable of good intracellular
penetration. Experience with the macrolide antibiotics has been disappointing, however, when compared
with its in vitro activities against the Lyme borreliae, and with the established efficacy of macrolides against
other intracellular parasites such as chlamydia, legionella, mycobacterium-avium intracellulare, and
toxoplasma. If, though, the Lyme borreliae reside in intracellular vesicles that are acidic, the macrolides'
activity would be sharply decreased at the lower pH. This is in contrast to the tetracyclines, which are active
at acid pH; even so, the activity of doxycycline was shown to be further increased by increasing the pH. In a
tissue culture model of ehrlichia infection, the use of lysosomotropic agents such as amantidine, NH4Cl, and
chloroquine increased the killing of intracellular organisms by doxycycline (22). Based on those studies, and
the hypothesis that late Lyme Disease symptoms are due to persisting intracellular infection, we have
been successfully treating patients using the combination of a macrolide and hydroxychloroquine
(10). As regards "CNS" disease, there is no evidence that ceftriaxone is more successful than either the
tetracyclines or the combination of macrolide and hydroxychloroquine; if our presumption that the
pathogenesis of the disease involves the localization of the borrelia to the endothelial cells of the blood
vessels serving the nervous system or to glial or neural cells is correct, then one would not need to have a
drug that can cross the blood-brain barrier to be effective. Indeed, the tetracyclines can cross the blood-brain
barrier to some extent, and were used when initially introduced into clinical medicine for the treatment of
meningitis, with some success. Macrolide antibiotics do not cross the blood-brain barrier, but have been
effective in treating other CNS infections (eg toxoplasmosis), and in our experience have been effective in
reversing the neuropsychiatric symptoms and signs (eg SPECT scans) of Lyme Disease (10). With regard to
the issue of bactericidal vs bacteristatic effects, any such effect in vivo has not been demonstrated. Finally,
there have been no reports showing any change in antibiotic resistance patterns during the course of
treatment. Ultimately, the determination of efficacy of therapy depends on the clinical response.
FUTURE - The diagnosis and treatment of Lyme Disease have been hampered by less than adequate
diagnostic tests and inadequate comparisons of antibiotic regimens. Specific antigen-based ELISA tests
should result in greater specificity, but sensitivity of any tests based on measurements of the host immune
response might still be of limited value if the borrelia remain intracellular. Most useful would be the
development of tests that can determine the presence and extent of any residual borreliosis. In the therapy of
Lyme Disease, double-blind, placebo-controlled and comparitive trials are needed to answer the questions
relating to duration and class of antibiotic therapy. The apparent failure of a regimen of one month of IV
ceftriaxone, followed by two months or oral doxycyline, to improve the outcomes of patients with chronic
Lyme Disease (19) was not surprising, based on prior observations that neither regimen used for a limited
duration was capable of yielding patient improvement (8,10,33). Additional trials are needed to evaluate
whether longer durations of treatment, using tetracycline itself, or the novel combination of macrolide and
lysosomotropic agent, would be proven effective treatments.
REFERENCES 1. Asch ES, Bujak DI, Weiss M, et al. Lyme Disease: an infectious and postinfectious syndrome. J Rheum 21:454-61,
1994. 2. Bakken LL, Case KL, Callister SM, et al. Performance of 45 laboratories participating in a proficiency testing program for
Lyme Disease serology. JAMA 268:891-5, 1992. 3. Brouqui P, Bodiga S, and Raoult D. Eucaryotic cells protect Borrelia burgdorferi
from the action of penicillin and ceftriaxone but not from the action of doxycycline and erythromycin. Antimicrob Agents Chemother
40:1552-4, 1996. 4. Cadavid D, O'Neill T, Schaefer H, and Pachner AR. Localization of Borrelia burgdorferi in the nervous system and
other organs in a nonhuman primate model of Lyme disease. Lab Investigation 80:1043-54, 2000. 5. Centers for Disease Control.
Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme
Disease. MMWR 44:590-1, 1995. 6. Choppa PC, Vojdani A, Tagle C, et al. Multiplex PCR for the detection of Mycoplasma
fermentans, M. hominis, and M. penetrans in cell cultures and blood samples of patients with chronic fatigue syndrome. Mol Cell
Probes. 12:301-8, 1998. 7. Donta ST. Lyme Disease: A clinical challenge. J Spirochet and Tick Dis 2:50-51, 1995. 8. Donta ST.
Tetracycline therapy of chronic Lyme Disease. Clin Infect Dis 25: S52-56, 1997. 9. Donta ST: Reactivation of latent Lyme Disease. X
Annual LDF International Conference on Lyme Borreliosis, National Institutes of Health, April 1997. 10.. Donta ST. Treatment of
chronic Lyme disease with macrolide antibiotics. In: Program and abstracts of the VIIIth International Conference on Lyme Borreliosis;
June 20-24, 1999; Munich, Germany. Abstract P193. 11. Donta ST: Reactivation of Lyme Disease following OspA vaccine. Int J
Antimicrob Agents 17:S116-7, 2001. 12. Donta ST: The existence of chronic Lyme Disease. Current Treatment Options in Infectious
Diseases 3:261-2, 2001. 13. Dressler F, Whalen JA, Reinhardt BN and Steere AC. Western blotting in the serodiagnosis of Lyme
disease. J Infect Dis 167:392-400, 1993. 14. Fallon B and Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psych
141:1571-83, 1994. 15. Feder HM Jr, Gerber M, and Krause PJ. Early Lyme disease: a flu-like illness without erythema migrans.
Pediatrics 91:456-9, 1993. 16. Fister RD, Weymouth LA, McLaughlin JC, et al. Comparative evaluation of three products for the
detection of Borrelia burgdorferi antibody in human serum. J Clin Microbiol 37:2834-7, 1989. 17. Georgilis K, Peacocke M, and
Klempner MS. Fibroblasts protect the Lyme Disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro. J Infect Dis166:440-4,
1992. 18. Gross DM, Forsthuber T, Tary-Lehman M, et al. Identification of LFA-1 as a candidate autoantigen in treatment-resistant
Lyme arthritis. Science 281:703-6, 1998. 19. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in
patients with persistent symptoms and a history of Lyme Disease N Engl J Med. 345: 85-92, 2001. 20. Levin JM, Nelson JA, Segretti J,
et al. In vitro susceptibilities of Borrelia burgdorferi to 11 antimicrobial agents. Antimicrob Agents Chemother 37:1444-6, 1993. 21.
Luft BJ, Dattwyler RJ, Johnson RC, et al. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double
blind, randomized, controlled trial. Ann Int Med 124:785-91, 1996. 22. Maurin M, Benoliel AM, Bongrand P, and Raoult D.
Phagolysosomal alkalinization and the bactericidal effect of antibiotics: the Coxiella burnetii paradigm. J Infect Dis 166:1097-102,
1992. 23. Nicolson GL, and Nicolson NL. Chronic infections as a common etiology for many patients with chronic fatigue syndrome,
fibromyalgia, and Gulf War Illness. Intern J Med 1:42-6, 1998. 24. Pachner AR, Delaney E, O'Neill T, and Major E. Inoculation of
nonhuman primates with the N40 strain of Borrelia burgdorferi leads to a model of Lyme neuroborreliosis faithful to the human disease.
Neurology 45:165-72, 1995. 25. Preac-Mursic V, Wilske B, Schierz G, et al. In vitro and in vivo susceptibility of Borrelia burgdorferi.
Eur J Clin Microbiol 6:424-6, 1987. 26. Roberts ED, Bohm RP Jr, Lowrie RC Jr, et al. Pathogenesis of Lyme neuroborreliosis in the
Rhesus monkey: the early disseminated and chronic phases of disease in the peripheral nervous system. J Infect Dis 178:722-32, 1998.
27. Seltzer EG, Gerber MA, Carter ML, et al. Long-term outcomes of persons with Lyme disease. JAMA 283:609-616, 2000. 28.
Shadick NA, Phillips CB, Logigian EL, et al. The long-term clinical outcomes of Lyme Disease. Ann Intern Med 121:560-7, 1994. 29.
Steere AC, Malawista SE, Hardin JA, et al. Erythema chronicum migrans and Lyme arthritis: the enlarging clinical spectrum. Ann
Intern Med 86:685-98, 1977. 30. Steere AC. Lyme Disease. NEJM 345:115-25, 2001. 31. Straubinger RK. PCR-based quantification of
Borrelia burgdorferi organisms in canine tissues over a 500-day postinfection period. J Clin Microbiology 38:2191-9, 2000. 32.
Wormser G, Nadelman RB, Dattwyler RJ, et al. Practice guidelines for the treatment of Lyme disease. Clin Infect Dis 31(S1):S1-S14,
2001. 33. Ziska MH, Donta ST, and Demarest FC. Physician preferences in the diagnosis and treatment of Lyme Disease in the U.S.
Infection 23:1-5, 1995.
This is extremely helpful.
LYME DISEASE QUESTIONS AND ANSWERS
Q: What is Lyme disease?
A: Lyme Disease is caused by a bacteria, specifically known as a spirochete (similar to the one that causes syphilis) and can be found at least 9 different species of ticks, 6 species of mosquitoes, 13 species of mites, 15 species of flies, 2 species of fleas, and numerous wild and domestic mammals including rabbits, rodents, and birds. Once transmitted to humans, the spirochete causes damage by spreading to various parts of the body. It can infect any and all organs and tissues in the body, causing a multitude of symptoms that can make a person very ill, sometimes totally disabled, and it can be fatal.
Q: Can Lyme Disease be transmitted from person to person?
A: The spirochete that causes Lyme disease has been found in semen, urine, blood, breast
milk and other body fluids and tissues. Those who have Lyme disease are prohibited
from donating blood or organs. Lyme disease has also been shown in a number of cases
to be passed from mothers to their unborn children and to babies through breast milk.
The spirochete can be found in the blood of deer which poses a threat to hunters and it is recommended that anyone handling raw venison use gloves.
Q: What are some of the signs and symptoms of the disease and its effects?
A: Unless a doctor is very experienced with Lyme disease, (he or she) may not recognize
it until it is too late or not at all. Lyme Disease has been misdiagnosed as a variety of
other conditions, including but not limited to, multiple sclerosis, chronic fatigue,
Alzheimer's, Fibromyalgia, depression, lupus, ADD, and various forms of arthritis. The list of possible symptoms is overwhelming. Anything from hearing loss to panic attacks surfacing in otherwise healthy individuals can be the first indication a person has contracted Lyme. Many patients do not recall a tick bite (thought to be the most common form of transmission) and many never get the typical bulls eye rash or flu-like symptoms that are sometimes associated with early stages of Lyme. Lyme can affect the eyes causing sensitivity to light, floaters, conjunctivitis, unequal pupils, bacterial infections, optic neuritis, blurred or double vision, and even blindness.
The brain and surrounding tissues may become infected and can leave the patient with permanent damage and/or pain. Cranial nerve palsies, encephalopathy, meningitis, dementia, memory deficits, brain hemorrhage, intracranial pressure, and aseptic meningitis can all be caused by
Lyme Disease.
A number of people develop problems with their digestive tract and people with Lyme can battle acid reflux, diarrhea, bloating, cramps, partial to full blockages, and pain. The bladder and reproductive organs are not spared and menstrual problems may surface in woman, while swollen testicles and pelvic pain may cause problems for men. There is often brain "fog," memory problems, confusion, difficulty thinking, and speech difficulties. Extreme fatigue may be a constant problem, along with muscle spasms and joint pain. The heart and lung problems found in Lyme patients can range from palpitations and shortness of breath, to heart block and respiratory failure.
Depression, severe anxiety, insomnia, and mood swings are common. The list goes on and on. The most important thing to remember is to consider Lyme even though a tick was not seen, or as rash did not appear, or a blood test comes back negative, especially if someone seems to have ``bizarre'' or seemingly unrelated symptoms, ``atypical'' diseases of any kind, or a disease that does not respond to ``standard'' treatment. The standard blood tests often used to detect Lyme antibodies are missing approximately half of the cases of Lyme Disease. Lyme, according to the Center for Disease Control, is a ``clinical diagnosis'' and negative tests should NOT rule out the disease. A lab specializing in Lyme Disease and co-infections should be used for the best chances of aiding the clinical diagnosis.
Q: Can Lyme cause other diseases?
A: Lyme can mimic many diseases and can force the patient to require treatment for a
variety of other problems. The thyroid responses can be off and require adjunct therapy.
Other infections (such as bladder, sinus, eye, and kidney infections) often develop and
are hard to fight off once the immune system is compromised. As the spirochetes inhabit
and die off in the human body, toxins develop, which can cause a multitude of chronic problems unless treated properly. A VCS test should be done to detect toxins.
Q: If caught early, can the effects be minimized?
A: Outdated information indicates a tick must be attached for at least 24 to 48 hours to infect a person. This is NOT the case. If you are bitten by a tick, the old wait-and-see approach can be devastating. Once in contact with an infected source, the earlier the treatment the better. You should NOT wait for blood tests, rashes, or symptoms to
appear before being treated if you have a tick bite.
Q: What type of treatment is available and how long does it run?
A: Treatment protocols vary depending on the amount of time between the infection and
when treatment begins. Current guidelines indicate newly discovered tick bites and early cases should be treated with antibiotics for a minimum of four to six weeks, and late stages usually require a minimum of four to six months of treatment, either IV or oral medications, or both. If treatments are discontinued before all symptoms of Lyme disease have ended, the person can remain ill and relapse. Many patients who were not treated
properly in the past have developed chronic cases of lyme and may need ongoing
treatment to be able to keep from deteriorating.
Q: What are the long-term effects of Lyme disease?
A: Patients can relapse with any and all of the original symptoms, develop new ones and
progressively deteriorate as time goes by. Lyme disease can cause pain and may affect
the ability to walk and may limit the range of motion. Speech, writing skills, or
communication problems may worsen. Many patients become bedridden or house bound.
Damage to the brain and other organs can result. The financial burden of Lyme can be
devastating. In addition, some insurance companies continue to deny necessary
treatments, which further stresses individuals and worsens their condition.
Q: What is the risk of contracting Lyme disease?
A: In some areas of the country where winters are not severe, it is possible to have nearly year-round exposure to ticks and other insects carrying Lyme disease. One female tick can produce 2,000 to 5,000 babies. Once an area has a small tick population, the numbers
increase rapidly. Ticks are carried into new areas by birds, pets, wildlife and people.
Q: What is the best way to prevent getting Lyme disease?
A: Often it is difficult to wear long pants, long sleeve shirts, shoes and socks and a
hat outdoors in the summer without suffering from heat related problems. I recommend
wearing light colored clothing, doing regular tick checks while outdoors and again after returning home. Showering using a stiff wash cloth may help to dislodge ticks before they become fully attached. I also recommend Repel Permanone be applied to outdoor clothing, hats, outdoor duffel bags and equipment. This unscented product kills ticks as they crawl across treated surfaces instead of trying to simply deter them as most repellents try to do. Yards can be treated with Sevin which is available locally in the garden department of many stores in a dust or concentrated liquid form. It won't kill all of the ticks but it will reduce the numbers to a safer level. I do NOT recommend the current Lyme vaccine that was recently pulled from the market.
Q: What other tick borne diseases can affect humans?
A: There are increasing numbers of Babesia, Bartonella (cat scratch fever), Rocky
Mountain Spotted Fever, and Ehrlichiosis being found as in patients originally diagnosed with Lyme disease or in patients who are exposed to ticks. These diseases
may appear with or without typical symptoms and are often being overlooked, causing
patients to suffer. These co-infections may become chronic if left untreated and all have
been found to be responsible as a cause of death in some individuals.
Lyme Net Flash Discussions:
http://flash.lymenet.org/scripts/Ultimate.cgi
Cheryl's Lyme Site: http://www.aero-vision.com/~cheryl/lymes.html
Lyme Disease: The Sensible Pursuit of Answers: http://www.x-l.net/Lyme/li.htm
Dual Infection: http://www.niaid.nih.gov/publications/dateline/0996/page3.htm
Lots of links on Lyme Disease: http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html
BARTONELLA ALERT
It is well known that co-infections may occur with Lyme Disease relatively frequently. Patients with a
history of Lyme Disease who have incomplete resolution of symptoms should be evaluated for Bartonella
infections. Bartonella is an intracellular, gram-negative bacteria that can become chronic. Certain lab tests
may not detect the infection due to a variety of strains and the lack of sensitivity of the tests. It is advised to
use both PCR and IFA methods of testing and not to dismiss the disease due to negative tests when
symptoms are present. Various Bartonella species have been recognized since the early 1950's.
Bartonella may not present in its usual form when additional infections, such as Lyme or Babesia are
present. In addition, typical Bartonella lesions are not always seen in patients, therefore, a diagnosis of
``fever of unknown origin'' should alert a physician to consider Bartonella. It is estimated that approximately
2/3 of the patients with Bartonella have a fever. Involvement of practically every organ has been reported.
There are a variety of symptoms associated with Bartonella, including, but not limited to, the following:
GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients
with Bartonella.
Note: Approximately 50 percent of patients who develop Encephalopathy can be affected
by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches,
Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may
develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the
head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch
Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome,
and Papilledema.
BONES AND MUSCLES : Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly.
Possible lab findings: The following may show up during standard testing: Thrombocytopenia,
pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes.
X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal
reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies
strongly suggestive of lymphoma do occur.
Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the
parenchyma.
TREATMENT: You MUST consult a knowledgeable physician for information on treatment for
disseminated Bartonella. Some of the medications which have been used in the past have included Doxycycline (with or without Rifampin), Ciprofloxacin, Erythromycin, Azithromycin,
trimethoprim-sulphamethoxazole, gentamicin, and other macrolide antibiotics.
[This message has been edited by Tincup (edited 03 September 2002).]
------------------
***Audrey Stein Goldings, MD. She is a private practice neurologist in Dallas. She is a member of the Internationl Lyme and Associated Disease Society and a founding member of the Board of Directors.
Controversies in Neuroborreliosis
by Audrey Stein Goldings, M.D.
Updated October, 2002
The objectives of this article are to cover issues related to Lyme disease that are not
even-handedly addressed in the current literature. It will:
1. Present a practical approach for making the diagnosis of neuroborreliosis,
2. Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic
ongoing infection),
3. Discuss the relationship between MS and Lyme,
4. Critique the current regimens published for treating neuroborreliosis, and
5. Present my own approach which may differ from some leading authorities.
?Anyone who, in discussion, relies upon authority uses not his understanding but rather
his memory.?
?Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of
neuroborreliosis so that he or she may better use current and evolving knowledge for
clinical decision making.
I. NEUROBORRELIOSIS: MAKING THE DIAGNOSIS
Because of difficulties in making the diagnosis of neuroborreliosis, the physician will
need a familiarity with the most common forms of presentations, which will be
emphasized. The following points will help evaluate the patient for neuroborreliosis:
1. For most patients, systemic features of disease coexist with, or predate, neurologic
manifestations.
2. Both central nervous and peripheral nervous system involvement is frequent with
Lyme disease and typically occur together.
3. Laboratory data may or may not confirm the diagnosis, and other disease in the
differential diagnosis must be evaluated thoroughly in cases where diagnostic ncertainty
exists.
4. Although history of exposure to B. burgdorferi should be sought, for various reasons,
patients may not remember a history of a tick bite, or the pathognomonic rash
particularly if the disease is presenting years after the exposure.
5. Early on, personality changes, psychiatric symptoms, or cognitive manifestations may
be the first, and occasionally the only, symptoms that the patient or family is aware of.
CLINICAL DESCRIPTIONS OF NEUROBORRELIOSIS
CENTRAL NERVOUS SYSTEM INVOLVEMENT
? Meningismus with normal CSF
? Lymphocytic Meningitis
? Meningoencephalomyelitis
? Subacute Encephalopathy (SAE)
PERIPHERAL NERVOUS SYSTEM INVOLVEMENT
? Cranial Neuropathy
? Painful Radiculitis
? Distal Neuropathy
? Plexopathy
? Myositis
? Polymyalgia Rheumatica
CENTRAL NERVOUS SYSTEM
MENINGISMUS
Patients may present with headache and stiff neck without evidence of CSF
inflammation. Since early CNS seeding has been described, as well as culture positivity
during latent disease without concurrent CNS inflammatory changes, these symptoms
probably indicate active infection. Stiff neck might alternatively be due to axonal
degenerative changes of the cervical paraspinal musculature, but there should be other
evidence of a more widespread neuropathy when this is the case.
LYMPHOCYTIC MENINGITIS
Lymphocytic Meningitis may appear to be indistinguishable from aseptic meningitis
during early-disseminated disease (weeks to months after inoculation with B.
burgdorferi). Most patients will have headaches that will fluctuate in intensity.
Associated features may include a cranial neuropathy in about one-third. Low-grade
encephalopathy is present in up to one-half, with mild memory concentration deficits,
mood changes, and sleep disturbance.
MENINGOENCEPHALOMYELITIS
Rarely, focal parenchymal CNS lesions occur. The MRI may show punctate white matter
lesions best seen on T2-weighted images; larger lesions occur infrequently. One brain
biopsy showed increased numbers of microglia cells, rare spirochetes, and minimal
inflammation. Transverse myelitis, movement disorders (extrapyramidal cerebellar,
chorea and myoclonus), and hemiparesis can occur.
PSYCHIATRIC DISORDERS
Psychosis, mood swings (mild or bipolar), profound personality changes, depression,
anorexia nervosa, obsessive-compulsive disorder, and panic attacks may occur. CSF may
be normal.
SUBACUTE ENCEPHALOPATHY (SAE)
The most common chronic CNS manifestation is a SAE, characterized by memory
problems and depression. Many patients (or their families) will complain of their
excessive daytime sleepiness and extreme irritability. These patients generally come to
the office disorganized (despite a supreme effort to be organized), unable to give a
coherent history. They will bring copious notes, which are invariably in the wrong order.
Most patients will complain of fatigue, and about one-half have headaches. Coincident
polyneuropathy is very common with spinal or radicular pain, or distal paresthesias.
Quantifiable deficits in memory, learning and retrieval, attention and concentration,
perceptual-motor skills, and problem solving are common. MMPI testing generally shows
a stable psychological pattern without significant psychopathology, similar to other
medically ill patients.
ADDITIONAL CNS TESTING:
NEGATIVE TEST RESULTS DO NOT RULE OUT THE DIAGNOSIS OF
NEUROBORRELIOSIS
Confirmation by CSF CULTURE is seldom practical because the organism is very
fastidious, present in small numbers, takes a long time to grow out, and may undergo
changes to forms which cannot be cultured easily.
CSF ANTIBODY TITERS may be present but are inconsistent and therefore their
absence does not rule out CNS infection. The MRI is seldom abnormal and the findings,
when present, are not specific for Lyme.
CSF PCR (test for spirochetal DNA) is a useful tool, but at present, because the capture
of DNA is inconsistent, a few questions still need to be addressed.
OLIGLOCLONAL BANDS AND IGG INDEX
Looking for evidence of an intrathecal immune response may be helpful, but it is not
specific. As a rule, oligoclonal bands and an elevated IgG index are not present in North
American Lyme disease and their presence should suggest other diseases.
THE PERIPHERAL NERVOUS SYSTEM
Cranial neuropathy, painful radiculitis, distal neuropathy, and plexopathy are seen and
generally reflect different clinical presentations of mononeuritis multiplex
(polyneuropathy). Bell?s Palsy occurs in almost 11% of all Lyme patients and is bilateral
in up to 1/3. Therefore, a bilateral Bell?s Palsy is very suspicious for Lyme in an endemic
area. Painful radiculitis or cranial neuropathy can be seen with meningitis but also with
normal CSF due to axonal neuropathy. Myositis may occur with Lyme as well as
polymyalgia rheumatica. Symptoms of chronic involvement of the peripheral nervous
system in a series of patients with chronic neurologic manifestations of Lyme disease
developed a median of 16 months after the onset of infection, while CNS involvement
began a median of 26 months after the onset of disease.
PERIPHERAL NERVOUS SYSTEM TESTING
Electrophysiological testing may show evidence of a mild peripheral neuropathy. Axonal
degeneration and perivascular inflammatory infiltrates are noted on pathological
specimens.
CHRONIC NEUROBORRELIOSIS
THE MOST COMMON PRESENTATION IS SAE, POLYNEUROPATHY, AND
ARTHRITIS
Most typically, patients present with SAE, most often combined with polyneuropathy.
Brief episodes of arthritis, primarily involving the knees, generally predate the symptoms
and may persist after onset of neurological abnormalities. The TRIAD OF SAE,
POLYNEUROPATHY, AND ARTHRITIS IS HIGHLY SUSPICIOUS FOR
NEUROBORRELIOSIS.
Since serologies may be contradictory or negative, the physician will have to settle for
treating if clinical suspicion is strong enough and assess whether the patient has
?possible? or ?probable? neuroborreliosis. Vigilant attempts to rule out other disorders
should be undertaken. Screening should be done for collagen vascular disease, other
infections, cancer, metabolic or endocrinological disturbances, etc. when a definite
diagnosis cannot be made.
II. CURRENT MEDICAL MYTHOLOGY
?YOU HAVE FIBROMYALGIA. YOU MIGHT HAVE HAD LYME DISEASE IN
THE FIRST PLACE, AND EVEN IF YOU DID, YOU WERE GIVEN ENOUGH
ANTIBIOTICS. RETREATMENT WILL NOT HELP.?
PERSISTENT INFECTION VERSUS POST-LYME SYNDROME
Many patients are sent home with antidepressants, muscle relaxers, but no antibiotics
from doctors? offices because they have symptoms of fibromyalgia. Pictures similar, or
identical, to fibromyalgia may be part of the constellation of symptoms of Lyme; it may
occur more rarely as an isolated symptom, or surface after what would otherwise be
considered successful treatment.
Symptoms of fibromyalgia due to Lyme disease have not been cured with short-term oral
or intravenous antibiotics, so some argue fibromyalgia is not due to active infection. I
would question whether those particular antibiotic regimens were adequate to eliminate
the infection, rather than assume the patient has developed ?Post-Lyme Syndrome?
(some yet to be defined immunologically triggered disorder).
THE SCOPE OF THE PROBLEM
Bujak et al. evaluated patients a mean of almost five years after treatment. 15% of these
patients had symptoms of fatigue and arthralgia. Almost one-half met criteria for
fibromyalgia or chronic fatigue syndrome. Fibromyalgia is thought to be a variant of the
chronic fatigue syndrome. Of note, nearly all patients continued to complain of memory
loss or concentration difficulties. One quarter had objective evidence of cognitive
impairment, and 15% manifested depression.
SYMPTOMS OF FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME IN
LYME DISEASE MAY BE ATTENUATED FORMS OR CHRONIC
MANIFESTATIONS OF THE FLU-LIKE SYMPTOMS ASSOCIATED WITH
EARLY DISSEMINATION
All physicians experienced with treating Lyme disease have had patients who present
with a recurrence of flu-like symptoms, months to years after they have completed the
usual antibiotic course of therapy, oral or intravenous, and re-exposure had not occurred.
These patients describe their flu-like symptoms as identical to their early-disseminated
stage of Lyme disease. The flu-like symptoms may reoccur following what appears to be
a trivial stressor, such as an uncomplicated viral URI. Patients may be able to ?contain?
their symptoms without specific antimicrobial therapy, but many will have to resume
antibiotics. These patients complain of having to go to bed due to excessive fatigue or
hypersomnolence. They cannot think straight, their muscles and joints ache, and they
may have a low-grade fever. Do these symptoms sound like a ?fibromyalgia-like
syndrome? or ?acute fatigue syndrome?? Prior medical experience suggests reactivation
of infection. Despite what may appear to have been a previous ?cure,? relapse of
symptoms in this context would appear to be due to failure to eradicate the infection and
with reactivation after a period of dormancy.
Reoccurrence of symptoms due to
immunologically triggered disease, INDEPENDENT of persistent infection seems
unlikely. In reality, DISTINCTIONS BETWEEN FLU-LIKE SYNDROME,
FIBROMYALGIA, AND CHRONIC FATIGUE BLUR. It seems more logical to
postulate that fibromyalgia and chronic fatigue syndrome, when seen with Lyme disease,
may be attenuated forms of chronic manifestations of earlier flu-like symptoms
associated with early dissemination.
III. THE ASSOCIATION BETWEEN MULTIPLE SCLEROSIS AND LYME
DISEASE: THREE DIFFERENT SCENARIOS
1) LYME CAN LOOK LIKE MS BUT SYMPTOMS AND PATHOLOGY RESIDE
OUTSIDE THE CENTRAL NERVOUS SYSTEM
Lyme may present as a MS-like illness, but on many occasions the pathology is not
actually in the CNS. Since chronic Lyme symptoms often are predominantly shifting,
vague, behavioral-psychological, psychiatric, and, as mentioned, neurological, they are
likely to conjure up the diagnosis of MS in patients and physician alike. However, the
existence of pathology outside the CNS should rule out the diagnosis of MS. Some of the
vague symptoms that can be mistaken for MS include those that are better attributed to
peripheral nervous system damage, as part of the mononeuritis multiplex that may occur.
This might cause numbness, tingling, facial weakness, diplopia, etc. The diagnosis of MS
cannot be made in the absence of CNS symptoms and signs. MRI and CSF findings
would also help support the diagnosis of MS. In addition, a significant CSF pleocytosis
may occur with Lyme disease, which should not be present with MS.
2) OTHER LYME PATIENTS DO HAVE CNS LESIONS, BUT THESE ARE
GENERALLY DISTINCTLY DIFFERENT, CLINICALLY, AND
PATHOLOGICALLY FROM MS
Patients can have CNS lesions in the brain or spinal cord with Lyme disease. The
European literature includes many more cases than the American for encephalomyelitis,
strokes, etc. In those cases where there is focal involvement of the brain or spinal cord, it
may be more difficult to distinguish neuroborreliosis from MS. Again, a brisk CSF
pleocytosis would help diagnose Lyme and the specific aforementioned test for CNS
Lyme antibodies. Simultaneous appearance of peripheral nervous system abnormalities
or arthritis should suggest the diagnosis of Lyme.
3) ANOTHER GROUP OF PATIENTS HAS MULTIPLE SCLEROSIS AND
LYME
There are some patients who have a clear-cut preexisting history of MS before the onset
of Lyme disease. The Lyme appears to accelerate their clinical course. For others, it
appears to be the initiating infection that triggers the MS. These patients are most likely
genetically predisposed to MS and the Lyme bacteria exerts its major effect by ?turning
on? immunologically directed CNS injury. It is not uncommon to get a history of the
onset of an exacerbation of MS related to infections, so Lyme exacerbating MS would be
expected. HLA Class II molecules determine the intensity of the immune response to
pathogenic foreign or self-antigens. With MS, the HLA-DR4 DQw8 haplotype has been
associated with chronic progressive MS and the HLA-DR2 DQw6 haplotype has been
associated with susceptibility to both chronic progressive and relapsing or remitting MS.
It is possible that in genetically predisposed patients of certain HLA types that infection
by Lyme bacteria would cause a high production of cytokines that would mediate the
demyelination and destruction of oligodendrocytes.
Most recently, researchers are studying positive outcomes when antibiotics that are most
useful in treating Lyme disease are used to treat ?MS.?
IV. WHAT'S WRONG WITH ?CURRENT GUIDELINES FOR TREATMENT?
OF NEUROBORRELIOSIS?
First, read the fine print.
It is interesting to note that recommendations for treatment in the medical literature may
carry provisos in small print that can easily be overlooked but are instrumental to
understanding how important individualization of therapy is at the current time. For
instance, in the past and in small print Dr. Alan Steere has written, ?treatment failures
have occurred in all these regimens, and retreatment may be necessary; the duration of
therapy is based on clinical response, and the appropriate duration of therapy with late
neurological abnormalities may be longer than two weeks.?
A more recent article written
by Rahn and Malawista states ?these guidelines are to be modified by new findings. It
should always be applied with close attention to the clinical course of individual
patients.? Dr. Katzel surveyed several Lyme Borreliosis conferences, including
international ones. He finds a trend towards the use of antibiotics for longer periods than
previously described and lack of standardization of care worldwide. 50% of physicians
responding considered using antibiotics for time periods greater than one year in
symptomatic seropositive patients, with almost as many extending therapy up to one and
a half years when necessary.
THE CASE FOR PERSISTENT INFECTION
Studies have shown that Lyme bacteria can be an intracellular pathogen and may evade
the normal host immune response. The causative spirochete, B. burgdorferi, for instance,
may persist within fibroblasts and survive at least 14 days of exposure to ceftriaxone. In
addition, B. burgdorferi has been cultured from CSF more than a half year after a
standard regimen of IV antibiotics, according to Preac-Mursic. Logigian and Steere
looked at patients with chronic neuroborreliosis, evaluating them six months after two
weeks of IV ceftriaxone. Over one-half of the patients had already been treated with
therapy that was thought appropriate for their stage of illness, yet the illness progressed.
The majority of patients studied had subacute encephalopathy and polyneuropathy. Most
had persistent fatigue, and almost one-half had headaches. One-third of these patients had
to stop working or had to go part-time, underscoring the disability that may be seen with
Lyme disease on an individual and societal level. After therapy, two-thirds of patients
improved markedly, but seldom completely. Twenty-two percent improved but then
relapsed, and fifteen percent had no change in their condition.
This study suggests that additional antibiotics greatly helped the majority with
neuroborreliosis but they were insufficient to cause long lasting remission in those
patients who subsequently relapsed. Persistent residual or irreversible disease may
explain the fifteen percent who had no change in their condition.
For those clinicians who have had extensive experience with chronic neuroborreliosis,
more recent recommendations suggesting that a regime of only 20 to 28 days or even 6
weeks of intravenous antibiotics is sufficient for cure proved contrary to clinical
experience. That brief dosing does not appear to prevent relapse or improve long-term
outcome dramatically in many cases. Perhaps, as recent information has instructed, that
is because the immune system does not begin to repair itself until the beginning of the
fourth month of antibiotic treatment. A trial of prolonged use of oral antibiotics seems
more reasonable in many cases, given these circumstances.
Antibiotics used for chronic neuroborreliosis should be able to penetrate the blood-brain
barrier, express activity against intracellular organisms, and assure good intraphagocytic
penetration. It is anticipated that the microbe during late disease has achieved maximal
adaptation to its host environment. Also, because of the long generation time of the
organism, lengthier therapy is warranted.
V. WE DON'T HAVE ALL THE ANSWERS BUT HERE?S WHAT IS
RECOMMENDED
If a patient has meningitis or appears acutely ill, particularly with possible arrhythmia,
admit him or her to the hospital for intravenous antibiotics and observation.
Generally,
however, in patients with stable late disease, oral antibiotics can be tried first. The
majority of patients will have some improvement or gradual resolution of
encephalopathic symptoms with a better energy level. After a six-week trial of
appropriate antibiotics, the patient is re-evaluated. If there is no Herxheimer response or
some clinical improvement during this interval, it is worrisome, and the physician needs
to be concerned about: 1) misdiagnosis, 2) noncompliance, and/or 3) permanent end
organ damage. These possibilities should be addressed with the patient before proceeding
with intravenous antibiotics since they may not be maximally beneficial either
Over the long haul, whether intravenous antibiotics are used for two weeks or longer,
with chronic refractory disease, ultimately other methods are necessary. A lengthier use
of oral antibiotics seems more logical than intravenous antibiotics for some patients.
Unfortunately, there are no current tests that adequately measure disease activity with
neuroborreliosis in all patients.
We are sorely in need of a test similar to the CSF VDRL for syphilis that would give us a
measure of disease activity. Culture negativity or disappearance of a specific immune
response in the serum or CSF has not been useful at this time to establish cure. CSF
antibodies may persist for years after otherwise successful treatment. Particularly in the
CNS, judging response of therapy is problematic because pathological changes may
incompletely or, at least, very slowly reverse. Any clinical improvement would be
expected to occur in a delayed fashion after therapy is given. Likewise, one would expect
neuropathy related to axonal degeneration to remit slowly and/or incompletely. Formal
neuropsychiatric testing is of value in documenting pathology and following the patient.
It also helps delineate what the patient can and cannot do. It also can help to define the
disease for the patient, family, insurer, and the employer. The patient needs to be told
that his or her symptoms should remit slowly and incompletely, when on antibiotic
treatment. This is particularly important when the symptoms have been chronic.
VI. IN SUMMARY
The premise of this approach to diagnosing and treating neuroborreliosis needs to be
reinforced.
1. There is no current laboratory test that makes or breaks the diagnosis of
neuroborreliosis. It is a clinical diagnosis substantiated by laboratory data when possible.
Fortunately, the majority of cases are fairly uniform in their lack of uniformity, and other
diagnoses are easily ruled out. In situations where the physician simply cannot achieve
diagnostic certainty, he or she should notify the patient that the diagnosis is ?possible? or
?probable? neuroborreliosis. This has been done previously with MS (i.e., possible,
probable, and definite MS), another disease where laboratory testing does not make the
diagnosis in and of itself.
2. There is no perfect current laboratory test to monitor success of therapy, and this is
critically needed. Until better testing is available, assessing progress, or lack thereof, will
largely be determined with clinical acumen.
3. The infection is difficult to eradicate and may require long-term treatment. The
spirochete, particularly in later stages, becomes well adapted to survival within its host
environment. There are some patients that we may not be able to cure, but will be able to
palliate with currently available antibiotics.
4. Although immunopathogenic factors may play a crucial role in disease presentation,
the presence of chronic infection appears necessary to perpetuate the process and play a
causative role in persistence of immunologically triggered symptoms.
5. There is no Diagnostic and Statistic Psychiatry Manual (DSM IV) category for
?antibiotic seeking behavior.? It is common for physicians who are unable to explain
patients? symptoms or effect their cure to ascribe a psychiatric cause to their malady.
This is easily done with Lyme since objective findings may be subtle or non-existent.
Because neuropsychiatric symptoms may pre-dominate, it is easy in some patients to
attribute their symptoms to depression or secondary gain. These patients do not in any
other way seek other medication that would be associated with habituation or addiction
(i.e., pain medicine).
Many patients suffer unfairly at the hands of physicians who refuse to make the diagnosis
because blood tests are either contradictory or negative. ?Lyme bashing,? for instance,
referring to Lyme disease as ?yuppie flu,? is demeaning. The ?just say no? attitude of
certain physicians towards Lyme patients who request retreatment with antibiotics should
not be condoned in the face of continuing experience with this potentially chronically
disabling infectious disease.
***Audrey Stein Goldings, MD is a private practice neurologist in Dallas, is member of
Internationl Lyme and Associated Diseases Society and a founding member of the Board
of Directors.
------------------
Please don't feed the ducks!
[This message has been edited by Tincup (edited 31 October 2002).]
DT
------------------
Please don't feed the ducks!
EXCELLANT POSTING!!I think you are right.. so if you want to contact the folks that let us use this site.. please do. I won't. I just feel fortunate enough to have it available for our use.. with some great folks in the background who do SOOOO much already.. I hate to bother them by asking.
Plus I hear some of them bite!
Nah.. they are all wonderful!
If we copy the site here on our records.. we can just copy and paste it as needed...
Please read this article by Dr. Donta...
Lyme Disease as a Model of Chronic Fatigue Syndrome Sam Donta, M.D.;
Boston University Medical Center The CFS Research Review 2002; 3: 2, 1-4
With the discovery of the causative agent of Lyme disease, a new chapter has been
opened in the understanding of chronic fatigue syndrome (CFS) and other multi-symptom
disorders. Lyme disease, caused by spirochetal bacteria transmitted by the bite of an
Ixodes (deer) tick, is now known to be one cause of chronic fatigue disorder that cannot
be readily distinguished from CFS, nor from what is termed fibromyalgia. These
disorders have similar major symptomatology consisting of fatigue and neurocognitive
dysfunction, along with numerous other symptoms that probably relate to altered
neurological function. Musculoskeletal symptomatology may be more frequent in
fibromyalgia and in some patients with chronic Lyme disease than in CFS, but the
definition of CFS also encompasses myalgias and arthralgias as part of the disorder.
Causative agents In Lyme disease, following the bite of an infected deer tick, the Borrelia
burgdorferi bacteria may spread locally and cause a variety of skin rashes, the most
typical being an expanding circular rash with a clearing area and center resembling a
bull's eye. Half of the rashes, however, are not typical, causing diagnostic problems for
physicians. Patients who are infected may not develop or see the rash, and may not
develop any future symptoms, remaining asymptomatic.
Some asymptomatic patients, however, may reactivate their infection following various
stressors such as trauma, surgery, pregnancy, an intercurrent illness, taking an antibiotic
for an unrelated reason, severe psychological stress or having received the Lyme vaccine.
Similar triggers such as trauma and other stresses are known to precipitate CFS and
fibromyalgia. It is likely that there are a number of other causes of CFS and fibromyalgia
in addition to chronic Lyme disease.
Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be
debated as a cause of CFS. It is uncertain whether EBV can cause symptoms other than
fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated
EBV infection in patients who are being immunosuppressed, but it remains possible that
EBV could cause one type of chronic fatigue disorder.
Some more recently recognized species of Mycoplasma (Mycoplasma fermentans,
Mycoplasma genitalium) have been implicated in chronic fatigue and other multi-system
disorders, including CFS itself, fibromyalgia and Gulf War Illness. These same bacteria
have also been implicated as causative agents of rheumatoid arthritis, based on
PCR-DNA evidence in patients with these disorders in which 50 percent are found to
have the DNA of the Mycoplasma in circulating white blood cells, compared to 5-10
percent of a normal population. Whether the presence of this DNA represents past
exposure or ongoing infection remains to be resolved. No longitudinal studies have yet
been performed in patients with CFS to determine whether the finding of Mycoplasma
DNA persists over months or years or whether such patients have any evidence of other
infection such as Lyme disease or infection with Chlamydia species.
Gender effects The effects of gender and host on susceptibility and expression of Lyme
disease, CFS and other multi-symptom diseases are also in need of further study. In all
these disorders, women appear to be more affected than men, usually at about 2:1 ratios.
It seems notable that neural cells contain estrogen and progesterone receptors, and that
herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell
nucleus. Treatment of chronic Lyme disease also seems to be gender-dependent to some
degree, with men generally having more speedy and complete recoveries compared to
women. Gender relationships are known for a number of infectious diseases, so it would
not be surprising that such a relationship exists for chronic Lyme disease, CFS and other
multi-symptom disorders.
Disease targets
In Lyme disease, the nervous system seems to be the primary target for the bacteria
causing the disease. Patients with the disease express many neurologic symptoms such as
pain, paresthesias including numbness, tingling, crawling and itching sensations, as well
as cognitive difficulties and mood changes. Even the joint pains and occasional
arthritis(joint pain is much more frequent than actual swelling of joints) appear to be
neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other
nonsteroidal anti-inflammatory agents have little if any effect on the pain.
Experimental evidence from animal models, primarily dogs and non-human primates,
also affirm the localization of B. burgdorferi DNA to the nervous system. The
mechanisms underlying the pathophysiology of the disease remain to be defined, but
could involve inflammatory responses, autoimmune responses or toxin-associated
disruption of neural function. Any inflammatory responses appear to be weak, and there
is no compelling evidence that Lyme disease is a result of immunopathologic
mechanisms. The target(s) for other causes of CFS remain to be defined. Without any
animal models, it becomes more difficult to study its pathogenesis and pathophysiology.
Nontheless, the central nervous system would appear to be a logical target for other
pathogens or other pathophysiologic processes. Any changes in immunologic function
would not appear to be sufficient to explain the various symptoms, and are likely to be
secondary to other pathogenetic processes.
Diagnosis
The diagnosis of Lyme disease is primarily based on clinical grounds. Just as with CFS,
the combination of symptoms over months and years, in the absence of an obvious
alternative diagnosis, is sufficient to make a presumptive clinical diagnosis. The
diagnosis of Lyme disease is made easier if a typical rash is present during the early
phase of infection. After that, it is difficult to distinguish the flu-like illness that can
occur a few weeks later, or can recur over a number of months. Some patients develop
severe headaches and an aseptic meningitis, which frequently is diagnosed instead as
"viral" meningitis.
If a Bell's palsy occurs, causing drooping of one side of the face, the possibility of Lyme
disease should occur to the physician. If an unprovoked arthritis occurs, causing swelling
of a single joint, especially the knee, but sometimes more than one joint, then the
possibility of Lyme disease should also be given high consideration. But it is the chronic
phase of the disease that causes most of the problems for physicians and patients,
because of the lack of "objective" signs and the presence of so many symptoms that it
causes some doctors to invoke psychologic reasons for the patients' symptoms.
Many such patients receive a diagnosis of CTFS or fibromyalgia, when they may have
underlying Lyme disease as the cause of their symptoms. The laboratory has been helpful
is some patients with Lyme disease, especially those with arthritis, in whom there are
stronger antibody responses than in those with the chronic, multisymptom form of the
disease. The criteria for the laboratory diagnosis has been patterned after the arthritic
form of the disease, and not the chronic for; thus, there are many physicians who are
misinformed about the test's lack of value in chronic disease.
The Lyme Western Blot is helpful when it shows reactions against specific proteins of B.
burgdorferi, but can be negative in 25-30 percent of patients who otherwise have chronic
Lyme disease. PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely
positive, most likely because the bacteria and their DNA are not present in those body
fluids, but inside nerve cells. The MRI exam of the brain in about 10 percent of patients
with chronic Lyme disease can show some white spots in various areas, similar to those
seen in multiple sclerosis, a neurologic disease of unknown cause that has some
overlapping symptoms with Lyme disease, such as the paresthesias. It is unclear how
many patients who have Lyme disease as a cause of CFS have these findings.
The brain SPECT scan, a variation of a PET scan, shows some changes in blood flow to
various parts of the brain, primarily the temporal (cognitive processing) and frontal
(mood) lobes in about 75 percent of patients with chronic Lyme disease. Patients with
CFS have also been reported to have some brain SPECT scan changes, frequently
involving the occipital lobe. No comparative studies have been made among patients
with chronic Lyme disease, CFS and fibromyalgia.
The mechanisms underlying these changes remain to be defined, but may be due to a
mild vasculitis or to a signaling problem within the nerve network of the brain in those
specific areas. It is promising, though, that these changes are reversible in most patients
treated with antibiotics that appear to be effective in treating the chronic Lyme disease.
Treatment Treatment of chronic Lyme disease, CFS, fibromyalgia, and other chronic
multi-symptom disorders has been primarily symptom-based. Although some of these
treatments (e.g., amitryptiline, other sleep medications, antidepressants, pain
medications) can offer some relief, they rarely lead to resolution of the chronic
symptoms.
In chronic Lyme disease, there continues to be controversy whether antibiotics can be of
value. In our studies, intracellular-type antibiotics such as tetracycline or the combination
of one of the erythromycin-type antibiotics (e.g., clarithromycin - Biaxin, azithromycin-
Zithromax) and hydroxycholoquine ( a drug which changes the pH inside cells to be less
acid, thus allowing the erythromycin-type antibiotics to be effective) given over a number
of months (6-18 months, sometimes longer) has resulted in substantial improvement and
cures in most patients with chronic Lyme disease.
Similar results have been noted in some patients with CFS of unknown cause, supporting
the hypothesis that some patients with CFS have an underlying infection responsive to
those antibiotics. Antibiotic trials in CFS have been limited to one month, a duration
inadequate to more properly evaluate the potential of certain antibiotics to exert a
positive effect on the disease. Additional studies, examining both potential etiologic
agents of CFS and treatment trials should lead to a better understanding of both the cause
and treatment of patients with CFS.
Selected readings Asch ES et al. "Lyme disease: an infectious and postinfectious
syndrome". J Rhjeum, 1994; 21:454061. Brouqui P et al. "Eucaryotic cells protect B.
burgdorferi from the action of penicillin and ceftriaxone but not from the action of
doxycycline and erythromycin." Antimicrob Agents Chemother, 1996; 40:1552-4 Choppa
PC et al. "Multiplex PCR for the detection of Mycoplasma fermentans, M. Hominis, and
M. penetrans in cell cultures and blood samples of patients with chronic fatigue
syndrome." Mol Cell Probes, 1998; 12:301-8 Donta ST. "Treatment of chronic Lyme
disease with macrolide antibiotics." In: Program and abstracts of the VIIIth International
Conf. on Lyme Borreliosis, June 20-24, 1999; Munich, Germany. Abstract P193. Donta
ST "Reactivation of Lyme disease following OspA vaccine." Int J Antimicrobial Agents,
2001; 17:S116-7. Donta ST. "The existence of chronic Lyme disease." Current Treatment
Options in Infectious Diseases, 2001; 3:261-2. Georgilis K et al. "Fibroblasts protect the
LD spirochete, B burgdorferi, from ceftriaxone in vitro." J Infect Dis, 1992; 166:440-4
Nicolson GL et al. "Chronic infections as a common etiology for many patients with
chronic fatigue syndrome, fibromyalgia, and Gulf War Illness" Intern J Med, 1998;
1:42-6. Roberts ED et al. "Pathogenesis of Lyme neuroborreliosis in the Rhesus monkey "
the early disseminated and chronic phases of disease in the peripheral nervous system." J
Infect Dis, 1998; 178: 722-32. Shadick NA et al. "The long-term clinical outcomes of
Lyme disease." Am Intern Med, 1994; 121:560-7. Straubinger RK. "PCR-based
quantification of B burgdorferi organisms in canine tissues over a 500-day post infection
period " Clin Microbiology, 2000;38: 2191-9.
___________________________________________________________- The CFS
Research Review is published quarterly by The CFIDS Association of America, PO Box
220398, Charlotte, NC 28222; Phone: (704) 365-2343 www.cfids.org
------------------
Barbara
------------------
Lyme Buddy
------------------
Lyme Buddy
[This message has been edited by pgm (edited 24 July 2002).]
------------------
Lyme Buddy
Dayle Ann
------------------
I'm still as smart as I ever was-- just not all at once!
------------------
Lyme Buddy
------------------
Barbara
See the link about different strains of Borrelia to find the ones that are especially found in Sweden. Then you can locate articles and studies by that scientist's name (who discovered it/wrote about it) for more clues to treatment.
Good luck, and healing to you.
DT
May I suggest...
Take your little "cut and paste" skills...
Copy the site address at the top.. and place it on a microsoft words sheet.. like a letter you were gonna type and save.
Then .. save it in your files under.. Links for newbies.. or whatever you want to name it...
Then.. when someone needs it.. have it there to copy and paste the site directly on the post you are writing.. like this is done below.
That will allow the new person to just click on the link to this paper.. and it won't have to be brought up all the time...
OK??? Just an idea.. good to see it is being used...
Your copy and paste job should show like this when you post it for others..
To find links and doctor information on Lyme Net...
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
------------------
Please don't feed the ducks!
But I also brought it to the top for some of the posts we miss.
Hope you're all rested up TC!
DT
SSooooo, here it is for, 'runforeverlikepre'!!!!
Today....... 
heehee - to the top for newbies!
[This message has been edited by momtoeight (edited 28 September 2002).]
I be trying this from now on!!! hehehehe!
I hear ya, Tincup....but I'm bringing this up for all the newbies.
------------------
Lyme Buddy
------------------
I'll have plenty of reading for the weekend......and the following week and probably through next month!
Gracias! 
Best,
Sue
I wish you had the "silver bullet" perhaps all your good deeds for us will provide the miracle we all are waiting for.
Med Clinix of N A is here in the med school library - it reads like you downloaded it, and the entire book is given to TBDS.
An admission that chronic Lyme exists, under the noses of Dattwyler and Steere!?
MCNA ignores Bowen and the LUAT at IGeneX', to say "The only...useful laboratory tests are the ... (ELISA) and Western blot assay."
This promotes serolology tests that MNCA then admits are flawed in 25-75% of the cases, due to false negatives. Then MCNA says
"Some physicians use clarithromycin and azithromycin in higher dosages and for longer periods of time, but there have been no reports of greater success with these drugs than with the tetracyclines or beta-lactams."
(Isn't this saying chronic Lyme exists but big gun antibiotics don't help?)
Next, MSNA says,
"In chronic Lyme disease, there continues to be controversy whether antibiotics can be of value. In our studies, intracellular-type antibiotics such as tetracycline or the combination of one of the erythromycin-type antibiotics (e.g., clarithromycin - Biaxin, azithromycin-Zithromax) and hydro-xycholoquine (a drug which changes the pH inside cells to be less acid, thus allowing the erythromycin-type antibiotics to be effective) given over a number of months (6-18 months, sometimes longer) has resulted in substantial improvement and cures in most patients with chronic Lyme disease.
THAT part is the most encouraging to me.
NM
[This message has been edited by Neil M Martin (edited 04 October 2002).]
To the top for astrocat and others.
Cheers,
Lightfoot
top
Hee hee
DT
to the top!
Thanks Everyone!
Good idea to bring it up for our Christmas visitors...
Happy Holly Days to all.....
I could use suggestions as to what to add... so if you have any ideas... please post at another site for me...
Thanks!
Hope this helps!
------------------
The ducks interpretation of Lyme has been challenged by those who research it, diagnose it, treat it, and live with it, and they don't have, in my opinion, a plausible alternative explanation as to what is going on.
So they can kiss my grits....
quote:
Originally posted by Tincup:
[B]
Lyme Disease: The Sensible Pursuit of Answers:http://www.x-l.net/Lyme/li.htm
[This message has been edited by Cheryl (edited 05 March 2003).]
You are keeping us straight... and that is a tuff job!
And I think it is also eat a pickle month too?
To the top for the new members.
quote:
Originally posted by momtoeight:
Thought at one time that I had that copy and paste thingy down.
...and
originally posted by sizzled:
I am sorry for my sorry computer...(or my skills!) but I CANNOT 'cut and paste' with this bleepin' machine!
Just reading thru some postings today & saw these...it is easy to cut/paste.....even an idiot like me can do it.
Highlight (with your mouse) any text you want to copy. Then using your keyboard, press the "ctrl" button down along w/the "c" key, "to copy". Go to wherever you want to paste, put the cursor where you want to paste what was just copied & press the "ctrl" button again, only this time, press the "v" key, "to paste".
Practice it using Notepad...it will become second nature to you.
Hope I have helped & not confused anyone more. It really is simple.
Like this (sure hope this works...lol):
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
Barb
I have been registerd since April but all I ususally do is read all the great advice. Now I will be busy printing up all this info to read when my kids are asleep.
God bless and Thank Ya'll
Starr
"I'm on the.. top of America, the top of America, da doo de dum da doo de dum de doo..."
I actually don' t know if America is what goes there, it just had the right number of syllables.
Up.
I had some boiled eggs and was thinking about you.
Not an egg goes by without fond thoughts of my favorite SIZZZZZZZZ.
Boy oh boy.. are we goofy or what? hehehe
Bringing this back up for folks....
------------------
*COLORADO SUPPORT SYSTEM*
[email protected]
To the top - for all those new friends and neighbors who have joined us.
This post is a must read for newbies, IMO, and answers a lot of questions right out of the gate. Many people are new to forums and general and don't know to reference faqs/links and though members of other types of forums might consider this 'laziness' or part of the learning curve I don't think this is the case here.
I just added the new Chiropractic Neurology Site. Please check it out.
Also... does anyone have suggestions for additional sites for here? Lemme no!
Up....
------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
"The 'silly question' is the first intimation of some totally new development".
Alfred North Whitehead
------------------
It's a jungle out there kiddies,
Have a very fruitful day!
Hi and WELCOME get a LLMD or at least Dr that is willing to learn about lyme .
Lyme is a clinical diagnosis, based on symptoms and on your response to treatment.
Good Luck bumpy road ahead
Post for a LLMD in Seeking a Doctor.
Links:
LymeNet Links for new members http://flash.lymenet.org/ubb/Forum1/HTML/009342.html http://www.lymediseaseaudio.com/
Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm
Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html
Making the most of your LLMD visit http://flash.lymenet.org/ubb/Forum1/HTML/020605.html
Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html Something to share with friends and family members http://flash.lymenet.org/ubb/Forum3/HTML/008886.html http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
Western Blot information:
http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt http://flash.lymenet.org/ubb/Forum1/HTML/022767.html http://www.igenex.com/lymeset2.htm
Drug interactions ETC. http://www.drugdigest.org/DD/Home
Labshttp://www.mdlab.com/ http://www.igenex.com/
GOOD LUCK
Co-infections Thanx M http://flash.lymenet.org/ubb/Forum1/HTML/021366.html
Herxing: http://flash.lymenet.org/ubb/Forum1/HTML/000638.html http://flash.lymenet.org/ubb/Forum1/HTML/014359.html
Check Diet Link http://atkins.com/
A new site just for all this stuff..
GREAT!
This is great. I hope someone can tell me what I need to do to copy all of the text. On long lines, I am missing the last 2-3 things. I tried to highlight and copy and still the same problem. Illiterate in many ways!!Help.
[This message has been edited by lymemomtooo (edited 19 June 2004).]
Me tinks I took too many "stupid" pills today.
I have had several questions asked to me tonight that I don't know the answers to... and you KNOW how that can make a goofy person feel right simple.
I am not a "computer person".... so sorry. I am posting to bring this up and maybe some sweet soul who still has a brain can explain.
If you still have problems.. or no replies... post a new topic and ask folks your question. Surely someone can help?
Don't give up... and GOOD LUCK!!!
I am moving it up in case other newbies need to read this.
Thanks, Tincup for putting this together!
I have some sites too from the SS disability process of trying to get benefits. I haven't checked ALL your sites yet, but will send to you if there are not in there so you can add them for a more complete list of sites for all! Thanks for your "labor of love" tincup that you spent hours putting together! A greatful newbie, Betty G.
from SHELLEY,
Frequent Contributor
Posts: 1500
From: columbia,sc
Registered: Mar 2003
posted 19 October 2004 00:30
www.geocities.com/lymeart3/misdiag-links.html#disease
The above site is from NIH, Natl. Institute of Health's MEDLINE library.
I personally love their medlineplus site...shows all illnesses, meds, & a medical dictionary for THAT specific illness. Sure has helped me alot since I learned of this! I highly recommend it.
==========================================
added 10-9-04 from SHELLEY,
Here's another one. (also on the good news post) --
this is the 300 OTHER MEDICAL CONDITIONS THAT LYME MIMICS W/CITATIONS ON CERTAIN ILLNESSES WHETHER IT'S REPUTABLE OR NOT! Please read -- important!
www.geocities.com/lymeart3/misdiag-links.html#disease
=======================================
from Betty G.
EDITED 10-19-04...
IGENEX is a NON-participating in health insurance plans; so when you submit IGX's PAID reimbursement paperwork plus their findings...positive or negative to YOUR health insurance company, they will only pay a VERY SMALL amount.
I paid $180 for 2 tests, IGM & IGG....they reimbursed me only $45. They said if I used a PARTICIPATING lab, I would have only paid $21 out-of-pocket vs. the $135.00!
I'm checking into MD LABS, New Jersey, if they test ALL 16 BANDS on IGM/IGG...they do accept health insurance, BC/BS...most others! They FILE your health insurance paperwork for you; IGX does NOT!
================================
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to USA's no. 1 Lyme testing lab:
IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!)
Please see their web site: www.igenex.com for their CURRENT prices and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your refrigerated blood taken EARLY in the week and received in 4 days so it doesn't sit in post offices!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting! Betty G, Iowa
==================================
Here is a LIST of ALL the web sites I've put together in the last 2-3 weeks about
SS DISABILITY & LYME DISEASE/MARSHALL PROTOCOL SITE, FORUMS, & DISCUSSION since my July 12, 2004 late stage lyme dx; misdiagnosed 34 yrs!
WESTERN BLOT INFO FROM IGENEX's web site: http://igenex.com/lymeset2.htm
Dr. Trevor Marshall's NEW DISCUSSION site & he visits these 3 boards daily trying to answer questions:
http://www.marshallprotocal.com http://sarcinfo.com/phorum/list.php?f=1
============================================
NOTE: for the BEST, most COMPREHENSIVE INFO I'VE EVER COME ACROSS:
go to DISINISSUES....disability insurance issues in yahoo group!
http://groups.yahoo.com/group/Disinissues/selprof?yguid=12748079&done=%2Fgroup%2FDisinissues%2F
I'm pretty sure the areas I found on my own below ARE found in the above link! So just look over the below I'm mentioned....it's maybe 5% of what they have put together! You don't know where to begin!
Read down thru their LINKS pages & decide what is most important. I found 3/4 down on 1st page helpful to me -- "really comprehensive site that helps explains the process of SS DETERMINATION" ....many SS rulings there!
==========================================
Social Security's ADULT IMPAIRMENT LIST - LYME disease shown on their APPROVED list of impairments, go to number 6....found after Sjogren's syndrome, etc. PLUS go to 14.09 also: www.ssa.gov/disabilty/professionals/bluebook/14.00-Immune-Adult.htm
This is mainly for those GOING THRU/WILL BE applying for SSDisabilty/SSI benefits! Otherwise, don't read.
**********************
Check out this SS site, laws & regulations, and their 10 questions/answers..you learn a lot!
[URL=http://ssa-custhelp.ssa.gov/cgi-bin/ssa.cfg/php/enduser/std_alp.php?sub_category_menus=&p_cat_lvl2=&p_lva=&p_li=&required=qcat&p_page=1&p_new_search=1&_dflt_sub_category=%7Ean y%7E&]http://ssa-custhelp.ssa.gov/cgi-bin/ssa.cfg/php/enduser/std_alp.php?sub_category_menus=&p_cat_lvl2=&p_lva=&p_li=&required=qcat&p_page=1&p_new_search=1&_dflt_sub_category=%7Ea ny%7E&[/URL] p_cat_lvl1=10&go=Go
HALLEX RULE I, 5, 3-17...this is the rule where 1st claim in Virginia's Appeals Council where the 2ND CLAIM they
will NOT work up or have the 2nd ALJudge hearing! I came across this when I was looking for something else!
http://www.socialsecurity.gov/OP_Home/hallex/I-05/I-5-3-17.html
Here's ALL of HALLEX Rules....read the headings as there are other areas that apply to us.....
http://www.socialsecurity.gov/OP_Home/hallex/hallex-I.html
Now here is the INFORMATIVE user friendly site I was referring to yesterday on APPEALS COUNCIL laws that EACH of the initial, reconsideration, ALJ, & AC have to use!
CODE OF FEDERAL REGULATIONS on SSI, old-age, disability:
http://www.socialsecurity.gov/OP_Home/cfr20/416/416-0000.htm
--------------------------------------
Edited & added 10-8-04:
Still going thru it 4 yrs., 2 months later...2nd time around like you.
1. Make sure your SSD specialized lawyer can represent you in FEDERAL COURT!
My lawyer of almost 4 yrs. in Nov. quit/withdrew from my case after my 1st lyme dr. appt. At this time, he finally told me he could NOT represent me in federal court; another lawyer would have to do this!
It was mutually agreed for him to quit me; I was not happy with him, and I was doing all the work!
He waived his attorney fee, plus his travel fees for my 1st case, & the overnight postage/copying his office did! So it was very mutual and amicable.
2. Since he quit me, I read ALL the info in both my cases that he returned to me.
I painstakingly noted EACH exhibit page numbers w/important info only:
date, drs. name, & what was important ... rashes that no one acknowledged as lyme; memory problems/concentration, when various things were diagnosed, etc.
Then I wrote the chief ALjudge in Des Moines who had sent me a letter 2 wks. prior to my lyme dx.
IMPORTANT NOTE TO THOSE REFILING 2ND CLAIMS:
============================================
(He stated they were sitting on my 2nd case NOT working it up and NO 2nd ALJ hearing UNTIL Virginia's Appeals Council decides on 1st case there 2 yrs. then. They were using Hallex rule that I showed on page 10 of tincup's posting.)
Found out later, has to be out east 2.5 YRS. BEFORE they even look at it...if then!
YESTERDAY'S UPDATE: My Iowa Sen. Tom Harkin's office Des Moines asst. contacted Virginia's AC legislative liasion rep.
I had received a letter last wk. from AC stating they had received my REQUEST FOR REVIEW and the date RECEIVED would be put in line for review .. another 18 - 30 MONTHS! Another 1.5 - 3 YEARS! Disgusted!
=======================
AC left phone message for him. My 2 cases are being COMBINED INTO ONE CASE!
So he has a call into them again to make sure my date is first date of June 02 they recd. it....not Sept. 04 when I wrote Des Moines ALJudge to REOPEN & REVIEW my 2nd claim. ----------------------
====== -- NOW IT IS ONE CASE -- NOT TWO!
Yippee...that's progress for me!
EDITED 10-8-04:
Just reread my DENIAL letter on my 2nd claim reconsideration....the one I didn't receive until 6 months after the fact, which states:
"If the appeals council decides to REMAND your client's prior app for a NEW hearing, your prior and current app may be CONSOLIDATED FOR THE NEW HEARING. We will send you a NOTICE OF HEARING at least 20 days BEFORE the date of hearing to tell you its time and place".
BOTTOM LINE: I had thought when I heard they were combined; that they had ruled "favorable" to win. NO...looks like they are planning a NEW HEARING for the 2 combined cases! Darn..not over yet! Betty
PS - an online never-met friend went all the way to FEDERAL COURT; took her 9 YEARS! Judge had told her lawyer he was going to deny this prior to hearing. But they had an independent dr. present. When the judge asked this dr. if she could do sustainable work, he read the treating drs. written medical reports, and said NO...she was approved because this dr. was there & stated in his medical expertise of other drs. reports!
DO NOT GIVE UP FIGHTING; you have to go to hell and back to be approved.
Yes, chronic fatigue was approved 3-5 yrs. ago, but even that on mine w/12-15 other things didn't budge them.
Did you have RFC, RESIDUAL FUNCTION CAPACITY, test done by your treating dr. & rheumatologist ... needed!
plus MFC, MENTAL FUNCTION CAPCITY, tests done by your psychiatrist & psychologist ... NEEDED!
Each of above goes thru SSD's process of 8 things you can/NOT do: sitting, standing, walking, bending, crawling, & 3 others I can't remember! This is your best chance for medical documentation.
Although I had a rep from SSD in Des Moines come & talk to our fibro/fatigue support group. He said they DO NOT USE THESE ..
they are done by SSD/DDS's ON STAFF MDS who never see you but use the submitted drs. skimpy medical reports on all of us! wrong!!
My case will be an example later when I find out if they used them or not! Betty, Iowa
=========================================
Added 10-9-04 from CONNIE MC...
-------------------------------
"I was approved first time around using this resource, and I had lots of education and professional work history as an obstacle to approval. It's a great resource. You can buy it for around $20 plus shipping at smazon.com.
NOLO'S GUIDE TO SOCIAL SECURITY DISABILITY
536 Pages
Getting & Keeping Your Benefits
David A. Morton, III, M.D.
Nolo Press - 2nd Edition, 2003
This book is essential for anyone dealing with a long-term or permanent disability. It is especially useful for professionals who deal with clients/patients who may be seeking SSI or SSDI benefits.
While it deals with the technicalities of a bureaucratic system, the materials are presented in an easily understandable, and non-technical format.
Samples of all the major forms used by the system are presented with guidance on how to complete them.
Excellent glossaries are placed throughout the book.
There is an explanation of what Social Security Disability is, proving a disability, appealing a denial of benefits, as well as a complete listing and descriptions of illnesses covered by Social Security.
Upon completion of the course you will be able to identify:
What benefits are available to disabled children
How age, education and work experience affect benefits
How to prepare a Continuing Disability Review
SSI Benefits and SSDI Benefits and more"
[This message has been edited by bettyg (edited 09 October 2004).]
[This message has been edited by bettyg (edited 19 October 2004).]
[This message has been edited by bettyg (edited 19 October 2004).]
10-8-04:
Still going thru it 4 yrs., 2 months later...2nd time around like you.
1. Make sure your SSD specialized lawyer can represent you in FEDERAL COURT!
My lawyer of almost 4 yrs. in Nov. quit/withdrew from my case after my 1st lyme dr. appt. At this time, he finally told me he could NOT represent me in federal court; another lawyer would have to do this!
It was mutually agreed for him to quit me; I was not happy with him, and I was doing all the work!
He waived his attorney fee, plus his travel fees for my 1st case, & the overnight postage/copying his office did! So it was very mutual and amicable.
2. Since he quit me, I read ALL the info in both my cases that he returned to me.
I painstakingly noted EACH exhibit page numbers w/important info only:
date, drs. name, & what was important ... rashes that no one acknowledged as lyme; memory problems/concentration, when various things were diagnosed, etc.
Then I wrote the chief ALjudge in Des Moines who had sent me a letter 2 wks. prior to my lyme dx.
IMPORTANT NOTE TO THOSE REFILING 2ND CLAIMS:
============================================
(He stated they were sitting on my 2nd case NOT working it up and NO 2nd ALJ hearing UNTIL Virginia's Appeals Council decides on 1st case there 2 yrs. then. They were using Hallex rule that I showed on page 10 of tincup's posting.)
Found out later, has to be out east 2.5 YRS. BEFORE they even look at it...if then!
YESTERDAY'S UPDATE: My Iowa Sen. Tom Harkin's office Des Moines asst. contacted Virginia's AC legislative liasion rep.
I had received a letter last wk. from AC stating they had received my REQUEST FOR REVIEW and the date RECEIVED would be put in line for review .. another 18 - 30 MONTHS! Another 1.5 - 3 YEARS! Disgusted!
=======================
AC left phone message for him. My 2 cases are being COMBINED INTO ONE CASE!
So he has a call into them again to make sure my date is first date of June 02 they recd. it....not Sept. 04 when I wrote Des Moines ALJudge to REOPEN & REVIEW my 2nd claim. ----------------------
====== -- NOW IT IS ONE CASE -- NOT TWO!
Yippee...that's progress for me!
EDITED 10-8-04:
Just reread my DENIAL letter on my 2nd claim reconsideration....the one I didn't receive until 6 months after the fact, which states:
"If the appeals council decides to REMAND your client's prior app for a NEW hearing, your prior and current app may be CONSOLIDATED FOR THE NEW HEARING. We will send you a NOTICE OF HEARING at least 20 days BEFORE the date of hearing to tell you its time and place".
BOTTOM LINE: I had thought when I heard they were combined; that they had ruled "favorable" to win. NO...looks like they are planning a NEW HEARING for the 2 combined cases! Darn..not over yet! Betty
PS - an online never-met friend went all the way to FEDERAL COURT; took her 9 YEARS! Judge had told her lawyer he was going to deny this prior to hearing. But they had an independent dr. present. When the judge asked this dr. if she could do sustainable work, he read the treating drs. written medical reports, and said NO...she was approved because this dr. was there & stated in his medical expertise of other drs. reports!
DO NOT GIVE UP FIGHTING; you have to go to hell and back to be approved.
Yes, chronic fatigue was approved 3-5 yrs. ago, but even that on mine w/12-15 other things didn't budge them.
Did you have RFC, RESIDUAL FUNCTION CAPACITY, test done by your treating dr. & rheumatologist ... needed!
plus MFC, MENTAL FUNCTION CAPCITY, tests done by your psychiatrist & psychologist ... NEEDED!
Each of above goes thru SSD's process of 8 things you can/NOT do: sitting, standing, walking, bending, crawling, & 3 others I can't remember! This is your best chance for medical documentation.
Although I had a rep from SSD in Des Moines come & talk to our fibro/fatigue support group. He said they DO NOT USE THESE ..
they are done by SSD/DDS's ON STAFF MDS who never see you but use the submitted drs. skimpy medical reports on all of us! wrong!!
My case will be an example later when I find out if they used them or not! Betty, Iowa
[This message has been edited by bettyg (edited 08 October 2004).]
NOLO'S GUIDE TO SOCIAL SECURITY DISABILITY
536 Pages
Getting & Keeping Your Benefits
David A. Morton, III, M.D.
Nolo Press - 2nd Edition, 2003
This book is essential for anyone dealing with a long-term or permanent disability. It is especially useful for professionals who deal with clients/patients who may be seeking SSI or SSDI benefits. While it deals with the technicalities of a bureaucratic system, the materials are presented in an easily understandable, and non-technical format. Samples of all the major forms used by the system are presented with guidance on how to complete them. Excellent glossaries are placed throughout the book. There is an explanation of what Social Security Disability is, proving a disability, appealing a denial of benefits, as well as a complete listing and descriptions of illnesses covered by Social Security.
Upon completion of the course you will be able to identify:
What benefits are available to disabled children
How age, education and work experience affect benefits
How to prepare a Continuing Disability Review
SSI Benefits and SSDI Benefits
And More...
DISINISSUES -- diability insurance issues w/countless good web sites for SS disability process! I'm pretty sure, I copied this elsewhere...must have forgotten to bookmark it! uffda... Betty, Iowa
Thanks Tincup! Betty G., Iowa
I had copied Shelley's post about 300 other medical conditions that lyme mimics that shows whether info is reputable or not for Nancy. Thanks Shelley. Betty G., Iowa
I just copied Shelley's below link & put it on page 10 of my posts where her 300 other conditions, similar to this link, are.
Great job Shelley. Betty G., Iowa
shelley
Frequent Contributor
Posts: 1500
From: columbia,sc
Registered: Mar 2003
posted 19 October 2004 00:30
www.geocities.com/lymeart3/misdiag-links.html#disease
This link is from Natl. Institute of Health's MEDLINE LIBRARY...very detailed & also by Art Dougherty, Calif., 2001.
I personally have used NIH's medlineplus area to find all illnesses, meds, and a dictionary for EACH illness...really has helped me & user-friendly! Betty G.
[This message has been edited by bettyg (edited 19 October 2004).]
So here's to Betty. (Best of health to you!)
This article is Part One of the 48 page booklet,
"But You LOOK Good: A Guide to Understanding and Encouraging People Living with Chronic, Debilitating Illness and Pain!"
http://www.myida.org/lookgood.htm
Maggie
After reading the below, MD tests ALL 16 BANDS also, and they accept most health insurance coverages; less out-of-pocket for you.
IGENEX labs, Calif., does NOT accept health insurance; so you pay a LARGE sum out-of-pocket expenses.
In my case, if Igenex participated in Bc/BS, I would have only paid $21 vs. $134 !!
FYI only...
Here's what I got from MD LAB LYME SPECIALIST today/yesterday:
"Dr. Tilton, thank you for your permission to post the info on message board you furnished me for the fibromyalgia/chronic fatigue support group folks I correspond with.
I and others will be calling MD for the info you mentioned. Betty
Wed, 20 Oct 2004 17:20:55 -0400 Richard Tilton wrote:
Yes, you may post my notes. Call the lab and they will send you some info.
Dr Tilton
On Wednesday, October 20, 2004, at 12:03 PM, Betty Gordon wrote:
Dr. Tilton, thank you so much for the email back!
So MDL tests on all 16 bands of WB..IGM/IGG! Good. I want to verify this. I'd read online that MD is a participating health
insurance lab. So I want to send more business your way; but wanted to make sure the testing there was all 16 like IGX's is.
I had heard that MDL and IGENEX were the 2 top-LYME testing lab facilities we have in the USA.
I was recently dx on 7-12-04 by IGX using their WB tests...they are NON-participating health insurance; I paid a lot out of pocket for this. I hadn't heard of MDL at the time of my recent testing...learned of your company on the lyme message board.
I'm a former fibromyalgia/chronic fatigue support group leader. As I learn more about lyme testing/illness, I forward emails to those I still correspond with so they may be tested too with RELIABLE, accurate testing.
With your permission, may I post your below note on 2 lyme message boards. They asked me to check MDLabs out to see if they test all 16 bands or not. (My clinic had me retest using Mayo Clinic...they test only 5 bands there and said I was negative.) I'm learning about the differences and quality of reputable lab results.
Do you have any "free" info your company can send me? Thanks! We teach each other about our illnesses.
PS - (we have 1 phone line; I'm in bed until 11-noon daily, then on internet for 2-4 hrs. straight researching. That's why it's easier for folks to just email me on results of any questions so I do NOT waste your precious time with "busy" signals!) Betty
Richard Tilton wroteTue, 19 Oct 2004 18:53:35 -0400 :
Ms G:
Thank you for your inquiry on Lyme Western blots. MDL reports ALL bands on a blot which meet the intensity standard, regardless if they are included in the CDC recommendations.
We also report out 2 interpretations; the CDC interp as well as the Alternate Interp (which I developed and published).
I suggest that you request some of our publications and other literature on Lyme Western blots as I do not know your specific question and would not wish to provide such a detailed answer in an email. Thank you
Dr RC Tilton
Dr Richard C Tilton
Medical Diagnostic Laboratories
133 Gaither Drive, Suite C
Mt. Laurel NJ 08054
MDL TOLL FREE (877) 269-0090 "
Bea Seibert
I just went back into my personal posts from page 10 on, and DELETED all "uping/bumping" or just thanking TC for her contributions.
Tincup, this important post and Treepatrol's copy with yours/his need to REMAIN AT THE TOP...have either of you contacted Bill directly so he could make sure it stays there and then we wouldn't have all the bumping/uping.
For a newbie, they have 12 full screens to go thru before they find any other important stuff in the middle.
I'll post a new post but just the posters names I saw from page 10 when I joined your wonderful post "uping/bumping" are:
Tincup, fish, congilla, lkpod, dullchime, seibert..., amanda, henson, lookinanswers, shassler, roseisland, treepatrol, recipegirl, samantha, shelly, etc.
If we ALL who just "uped" would DELETE these unnecessary replies, the newbie would have less screens to go thru to read any important links/info that anyone else added to your wonderful post TC.
EDITED: I forgot to say why I was suggesting this. On another non-lyme board I'm on, they have "bumped/uped" a post from a celebrity 3500+ times ... no news; just bumping! That person posted once & it leads newbies to believe they have posted more than once.
How about it gang? Thanks for considering.
Betty G., Iowa
[This message has been edited by bettyg (edited 22 November 2004).]
Co-Infections:
http://www.lymeinfo.net/coinfections.html
New Patients:
http://www.lymeinfo.net/patients.html
International Patients:
http://www.lymeinfo.net/international.html
Medical Literature Summaries:
http://www.lymeinfo.net/lymefiles.html
Email List:
http://www.lymeinfo.net/lymeinfo.html
Insurance & Disability:
http://www.lymeinfo.net/insurance.html
More Pages at LymeInfo:
http://www.lymeinfo.net/pages.html
Increasing Font Size:
http://flash.lymenet.org/ubb/Forum5/HTML/000577.html
------------------
Lyme Disease Information By Email:
http://groups.yahoo.com/group/lymeinfo/
Lyme Disease Information Online:
http://www.lymeinfo.net
FEB 2005- New & Improved Website Now Here!!!
------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
"A friend is someone who knows the song in your heart
and can sing it back to you when you have forgotten the words".
Unknown
Thank you so much for the wealth of
information. I do really appreciate your
assistance. And I will do what I can to
help others.
Suzie
quote:
Originally posted by Tincup:
Revised June 2003WELCOME TO LYMENET
Are you looking for a doctor to assist you with Lyme or other tick borne infections?
If so, suggestions are posted below to assist you in your search. If you would like to have
general information about tick borne diseases, please skip down to the next post.To find a LLMD (Lyme Literate MD)
Go to the Seeking a Doctor section here at Lyme Net and post a message mentioning
your area in the title of the post. If you get no reply, please post another request in the Medical Section and ask for help. OR...If you are looking for Lyme Literate Medical Doctors you can write to (email) the
person who helps find patients a Lyme doctor. She is at the Lyme Disease Association. Her name is Kim Uffleman and her email address is:Please let Kim know where you are located (town, county, state). She will make every
effort to reply with up to 4 LLMD's that are as close as possible. Please put the name of
your state in the subject line of the email.OR....
The Lyme Disease Association has a toll free line (1-888-366-6611) you can use to
request a LLMD referral.GOOD LUCK!
[This message has been edited by Tincup (edited 02 January 2004).]
Art Dougherty's 300 OTHER illnesses mimic lyme disease link has been taken off; so you'll want to delete the 3 links you have shown on your newbie's links. Was taken off sometime this past 30 days.
bettyg
TC