posted
Thanks Tree; I'll go in to print the latest web links so I'll know what's there for now until you UPDATE again!
This has worked well for me your showing what is added to your replies here at the bottom. Thanks for doing this...hope others may have discovered this trick of ours.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Would you add this link .. "lyme, MS, and breast cancer THESIS written by Megan Blewitt, the 15 yr. old for HS paper, and submitted for natl. competition. This is a college level thesis!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Evidence-based guidelines for the management of Lyme disease. BIBLIOGRAPHIC SOURCE(S) COMPOSITION OF GROUP THAT AUTHORED THE GUIDELINE
Working Group Members: Daniel Cameron, MD, MPH, Internal Medicine and Epidemiology, Mt. Kisco, New York; Andrea Gaito, MD, Rheumatology, Basking Ridge, New Jersey; Nick Harris, PhD, Immunology, Pal Alto, California; Gregory Bach, DO, Family and Integrative Medicine, Colmar, Pennsylvania; Sabra Bellovin, MD, Family Practice, Portsmouth, Virginia; Kenneth Bock, MD, Family Practice, Rhineback, New York; Steven Bock, MD, Family Practice, Rhineback, New York; Joseph Burrascano, MD, Internal Medicine, East Hampton, New York; Constance Dickey, RN, Registered Nurse, Hampden, Maine; Richard Horowitz, MD, Internal Medicine, Hyde Park, New York; Steven Phillips, MD, Internal Medicine, Ridgefield, Connecticut; Laurence Meer-Scherrer, MD, Internal Medicine, Flamatt, Switzerland; Bernard Raxlen, MD; Psychiatry, Greenwich, Connecticut; Virginia Sherr, MD, Psychiatry, Holland, Pennsylvania; Harold Smith, MD, Emergency Medicine, Danville, Pennsylvania; Pat Smith, President, Lyme Disease Association, Inc., Jackson, New Jersey; Raphael Stricker, MD, Hematology and Immunotherapy, San Francisco, California * Evidence-based guidelines for the management of Lyme disease. Expert Rev Antiinfect Ther 2004;2(1 Suppl):S1-13. [66 references]
GUIDELINE STATUS
This is the current release of the guideline. BRIEF SUMMARY CONTENT RECOMMENDATIONS EVIDENCE SUPPORTING THE RECOMMENDATIONS IDENTIFYING INFORMATION AND AVAILABILITY DISCLAIMER
Go to the Complete Summary RECOMMENDATIONS MAJOR RECOMMENDATIONS
Highlights of Guidelines
* Since there is currently no definitive test for Lyme disease, laboratory results should not be used to exclude an individual from treatment. * Lyme disease is a clinical diagnosis and tests should be used to support rather than supersede the physician's judgment. * The early use of antibiotics can prevent persistent, recurrent, and refractory Lyme disease. * The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course. * The practice of stopping antibiotics to allow for delayed recovery is not recommended for persistent Lyme disease. In these cases, it is reasonable to continue treatment for several months after clinical and laboratory abnormalities have begun to resolve and symptoms have disappeared.
Diagnostic Concerns
The most important method for preventing chronic Lyme disease is recognition of the early manifestations of the disease.
Atypical Early Presentations
Early Lyme disease classically presents with a single erythema migrans (EM or "bull's-eye") rash. The EM rash may be absent in over 50% of Lyme disease cases, however. Patients should be made aware of the significance of a range of rashes beyond the classic EM, including multiple, flat, raised, or blistering rashes. Central clearing was absent in over half of a series of EM rashes. Rashes can also mimic other common presentations including a spider bite, ringworm, or cellulitis.
Physicians should be aware that fewer than 50% of all Lyme disease patients recall a tick bite. Early Lyme disease should also be considered in an evaluation of "off-season" onset when flu-like symptoms, fever, and chills occur in the summer and fall. Early recognition of atypical early Lyme disease presentation is most likely to occur when the patient has been educated on this topic.
New Chronic Lyme Disease Presentations
A detailed history may be helpful for suggesting a diagnosis of chronic Lyme disease. Headache, stiff neck, sleep disturbance, and problems with memory and concentration are findings frequently associated with neurologic Lyme disease. Other clues to Lyme disease have been identified, although these have not been consistently present in each patient: numbness and tingling, muscle twitching, photosensitivity, hyperacusis, tinnitus, lightheadedness, and depression.
Most patients diagnosed with chronic Lyme disease have an indolent onset and variable course. Neurologic and rheumatologic symptoms are characteristic, and increased severity of symptoms on wakening is common. Neuropsychiatric symptoms alone are more often seen in chronic than acute Lyme disease. Although many studies have found that such clinical features are often not unique to Lyme disease, the striking association of musculoskeletal and neuropsychiatric symptoms, the variability of these symptoms, and their recurrent nature may support a diagnosis of the disease.
The Limitations of Physical Findings
A comprehensive physical examination should be performed, with special attention to neurologic, rheumatologic, and cardiac symptoms associated with Lyme disease.
Physical findings are nonspecific and often normal, but arthritis, meningitis, and Bell's palsy may sometimes be noted. Available data suggest that objective evidence alone is inadequate to make treatment decisions, because a significant number of chronic Lyme disease cases may occur in symptomatic patients without objective features on examination or confirmatory laboratory testing.
Factors other than physical findings, such as a history of potential exposure, known tick bites, rashes, or symptoms consistent with the typical multisystem presentation of Lyme disease, must also be considered in determining whether an individual patient is a candidate for antibiotic therapy.
Sensitivity Limitations of Testing
Treatment decisions should not be based routinely or exclusively on laboratory findings. The two-tier diagnostic criteria, requiring both a positive enzyme-linked immunosorbent assay (ELISA) and western blot, lacks sensitivity and leaves a significant number of individuals with Lyme disease undiagnosed and untreated. These diagnostic criteria were intended to improve the specificity of tests to aid in identifying well-defined Lyme disease cases for research studies. Though arbitrarily chosen, these criteria have been used as rigid diagnostic benchmarks that have prevented individuals with Lyme disease from obtaining treatment. Diagnosis of Lyme disease by two-tier confirmation fails to detect up to 90% of cases and does not distinguish between acute, chronic, or resolved infection.
The Centers for Disease Control and Prevention (CDC) considers a western blot positive if at least 5 of 10 immunoglobulin G (IgG) bands or 2 of 3 immunoglobulin M (IgM) bands are positive. However, other definitions for western blot confirmation have been proposed to improve the test sensitivity. In fact, several studies showed that sensitivity and specificity for both the IgM and IgG western blot range from 92 to 96% when only two specific bands are positive.
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection. In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity. For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
Several additional tests for Lyme disease have been evaluated. These include antigen capture, urine antigen, and polymerase chain reaction. Each has advantages and disadvantages in terms of convenience, cost, assay standardization, availability, and reliability. These tests remain an option to identify people at high risk for persistent, recurrent, and refractory Lyme disease but have not been standardized.
Seronegative Lyme Disease
A patient who has tested seronegative may have a clinical presentation consistent with Lyme disease, especially if there is no evidence to indicate another illness.
Although many individuals do not have confirmatory serologic tests, surveillance studies show that these patients may have a similar risk of developing persistent, recurrent, and refractory Lyme disease compared with the seropositive population.
Continued Importance of Differential Diagnosis
The differential diagnosis of Lyme disease requires consideration of both infectious and noninfectious etiologies. Among noninfectious causes are thyroid disease, degenerative arthritis, metabolic disorders (vitamin B12 deficiency, diabetes), heavy metal toxicity, vasculitis, and primary psychiatric disorders.
Infectious causes can mimic certain aspects of the typical multisystem illness seen in chronic Lyme disease. These include viral syndromes, such as parvovirus B19 or West Nile virus infection, and bacterial mimics, such as relapsing fever, syphilis, leptospirosis, and mycoplasma.
The clinical features of chronic Lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological Borrelia burgdorferi infection.
Clinical Judgment
Clinical judgment remains necessary in the diagnosis of late Lyme disease. A problem in some studies that relied on objective evidence was that treatment occurred too late, leaving the patient at risk for persistent and refractory Lyme disease.
As noted, time-honored beliefs in objective findings and two-tier serologic testing have not withstood close scrutiny. Lyme disease should be suspected in patients with newly acquired or chronic symptoms (headaches, memory and concentration problems, and joint pain). Management of patients diagnosed on the basis of clinical judgment needs to be tested further in prospective trials, and diagnostic reproducibility must be verified.
Testing for Coinfection
Polymicrobial infection is a new concern for individuals with Lyme disease, and coinfection is increasingly reported in critically ill individuals. Although B. burgdorferi remains the most common pathogen in tick-borne illnesses, coinfections including Ehrlichia and Babesia strains are increasingly noted in patients with Lyme disease, particularly in those with chronic illness. Bartonella is another organism that is carried by the same ticks that are infected with B. burgdorferi, and evidence suggests that it is a potential coinfecting agent in Lyme disease.
Recent animal and human studies suggest that Lyme disease may be more severe and resistant to therapy in coinfected patients. Thus, concurrent testing and treatment for coinfection is mandatory in Lyme disease patients.
Treatment Considerations
Since Lyme disease can become persistent, recurrent, and refractory even in the face of antibiotic therapy, evaluation and treatment must be prompt and aggressive.
Prompt Use of Antibiotics
Although no well designed studies have been carried out, the available data support the prompt use of antibiotics to prevent chronic Lyme disease. Antibiotic therapy may need to be initiated upon suspicion of the diagnosis, even without definitive proof. Neither the optimal antibiotic dose nor the duration of therapy has been standardized, but limited data suggest a benefit from increased dosages and longer treatment, comparable to the data on tuberculosis and leprosy which are caused by similarly slow-growing pathogens.
Choosing an Antibiotic
In acute Lyme disease, the choice of antibiotics should be tailored to the individual and take into account the severity of the disease as well as the patient's age, ability to tolerate side effects, clinical features, allergy profile, comorbidities, prior exposure, epidemiologic setting, and cost.
Conversely, persistent and refractory Lyme disease treatment is more likely to include intravenous and/or intramuscular antibiotics. The choices depend in part on the patient's response to antibiotic therapy and on the success of antibiotics in treating other Lyme disease patients.
Therapy usually starts with oral antibiotics, and some experts recommend high dosages. The choice of antibiotic therapy is guided by weighing the greater activity of intravenous antibiotics in the central nervous system against the lower cost and easy administration of oral antibiotics for B. burgdorferi.
Oral Antibiotic Options
For many Lyme disease patients, there is no clear advantage of parenteral therapy. Along with cost considerations and pressure to treat patients with Lyme disease with the least intervention, there is growing interest in the use of oral therapy.
First-line drug therapies for Lyme disease may include (in alphabetical order): oral amoxicillin, azithromycin, cefuroxime, clarithromycin, doxycycline, and tetracycline. These antibiotics have similar favorable results in comparative trials of early Lyme disease.
Intravenous Antibiotic Options
It is common practice to consider intravenous antibiotics upon failure of oral medications in patients with persistent, recurrent, or refractory Lyme disease, and as the first line of therapy for certain conditions, (i.e., encephalitis, meningitis, optic neuritis, joint effusions, and heart block).
Ideally, the intravenous antibiotic should be selected on the basis of in vitro sensitivity testing or clinical experience. Intravenous antibiotics are also justified by concern for penetration into the central nervous system.
Until recently, ceftriaxone, cefotaxime, and penicillin were the only intravenous antibiotics routinely studied for use in Lyme disease. Intravenous imipenem, azithromycin, and doxycycline have an adequate antispirochetal spectrum of activity and may represent suitable alternative therapies. However, the latter two drugs are often considered for intravenous use only if they are not tolerated orally.
Intramuscular Antibiotic Options
Intramuscular benzathine penicillin (1.2 to 2.4 million units per week) is sometimes effective in patients who do not respond to oral and intravenous antibiotics. If intramuscular benzathine penicillin is used, long-term therapy may be necessary due to the low serum concentration of this form of penicillin. Benzathine penicillin has mainly been used in patients who have had multiple relapses while receiving oral or intravenous antibiotic therapy or who are intolerant of oral or intravenous antibiotics.
Combination Antibiotic Treatment
Combination therapy with two or more antibiotics is now increasingly used for refractory Lyme disease and has also been given as initial therapy for some chronic presentations.
This approach is already used for another tick-borne illness, babesiosis. Oral amoxicillin, cefuroxime, or (more recently) cefdinir combined with a macrolide (azithromycin or clarithromycin) are examples of combination regimens that have proven successful in clinical practice, although controlled clinical trials are lacking in persistent, recurrent, and refractory Lyme disease.
Combination therapy in patients with Lyme disease raises the risk of adverse events. This risk must be weighed against the improved response to combination therapy in Lyme disease patients failing single agents.
Sequential Treatment
Clinicians increasingly use the sequence of an intravenous antibiotic followed by an oral or intramuscular antibiotic. In two recent case series that employed combination therapy and sequential therapy, most patients were successfully treated. A logical and attractive sequence would be to use intravenous therapy first (e.g., intravenous ceftriaxone), at least until disease progression is arrested and then follow with oral therapy for persistent and recurrent Lyme disease.
Dosage
Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000-6,000 mg of amoxicillin, 300-400 mg doxycycline, and 500-600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.
With higher doses, there may be an increase in adverse events in general and gastrointestinal problems in particular. Acidophilus has reportedly reduced the incidence of Clostridium difficile colitis and non-C. difficile antibiotic-related diarrhea.
Serious adverse effects of antibiotics, however, were less common than previous estimates. In a recent clinical trial of chronic Lyme disease, the overall serious adverse event rate was 3% after three months of antibiotics, including 1 month of intravenous antibiotics. Clinicians who have experience with higher dose antibiotic therapy must balance the benefit of higher drug levels achieved with this therapy against the modest risk of gastrointestinal and other side effects.
Duration of Therapy
Because of the disappointing long-term outcome with shorter courses of antibiotics, the practice of stopping antibiotics to allow for a delayed recovery is no longer recommended for patients with persistent, recurrent, and refractory Lyme disease. Reports show failure rates of 30-62% within 3 years of short-course treatment using antibiotics thought to be effective for Lyme disease. Conversely for neurologic complications of Lyme disease, doubling the length of intravenous ceftriaxone treatment from 2 to 4 weeks improved the success rate from 66 to 80%.
The management of chronic Lyme disease must be individualized, since patients will vary according to severity of presentation and response to previous treatment.
Concurrent risk factors (i.e., coinfections, previous treatment failures, frequent relapses, neurologic involvement, or previous use of corticosteroids) or evidence of unusually severe Lyme disease should lead to the initiation of prolonged and/or intravenous antibiotic treatment. Physicians should always assess the patient's response to treatment before deciding on appropriate duration of therapy (i.e., weeks versus months).
Empiric Treatment
The importance of establishing the diagnosis of Lyme disease is heightened in light of increasing concern about antibiotic overuse. After an appropriate history, physical examination, and laboratory testing are completed, empiric antimicrobial therapy should be initiated on the basis of clinical clues, the severity of the patient's acute illness, underlying disease, and the likelihood of B. burgdorferi infection. The International Lyme and Associated Diseases Society (ILADS) working group recommends that empiric treatment be considered routine for patients with a likely diagnosis of Lyme disease.
Persistent Lyme Disease
Persistent Lyme disease is more resistant to treatment and more likely to produce a relapse. Although persistent Lyme disease may resolve without additional therapy, many experts believe that this condition should be treated with repeated and prolonged antibiotics. Physicians should extend the duration of antibiotics to prevent or delay recurrent and refractory Lyme disease.
Recurrent Lyme Disease
Despite previous antibiotic treatment, Lyme disease has a propensity for relapse and requires careful follow-up for years. The data suggest that failure to eradicate the organism may be the reason for a recurrence of symptoms. Early and aggressive treatment with antibiotics is indicated for recurrent Lyme disease. The ultimate impact from retreating each episode of recurrent Lyme disease is currently unclear.
Refractory Lyme Disease
Refractory Lyme disease is a devastating condition that usually affects patients with persistent symptomatology and long-term disability. Prompt and aggressive institution of antibiotic therapy may be essential to prevent refractory disease. Increasing evidence shows that antibiotics have a beneficial effect on the course of refractory Lyme disease even in cases where the patient is intolerant of antibiotics or when a previous regimen has failed. Several months of therapy are often required to produce clear evidence of improvement. During this time, symptomatic treatment may be combined with antibiotic treatment.
Treatment Failure
When patients fail to respond or their conditions deteriorate after initiation of empiric therapy, a number of possibilities should be considered other than Jarisch-Herxheimer reaction. These include adverse events that limit treatment, allergic history to medication, inappropriate or inadequate dosing regimen, compliance problems, incorrect medication, immune sequelae, and sequestering of the organism (e.g., in the central nervous system). An alternative diagnosis or coinfection should also be considered.
Symptomatic Treatment
Although there may be a potential role for symptomatic treatment in chronic Lyme disease, this approach has little support due to the strong possibility of persistent infection. Owing to the potential hazard of immunosuppression and the poor outcome in one study, steroid therapy is not recommended. Surgical synovectomy is associated with significant morbidity and does not address neurologic presentations; it should be reserved for knee pain failing antibiotic treatment. Intra-articular steroid injection may be useful as a temporizing procedure in patients with persistent knee pain but this runs the risk of masking persistent infection.
Symptomatic therapy (particularly anti-inflammatory medications, tricyclic antidepressants, selective serotonin re-uptake inhibitors, and hydroxychloroquine) may be useful in concert with antibiotics and in individuals failing antibiotics.
Hyperbaric oxygen therapy (HBOT) is under study but is not recommended for routine therapeutic use. Other treatments, including cholestyramine (CSM), antifungal therapy, and antiviral agents require further study.
Since patients are becoming more interested in alternative therapies (e.g., traditional Chinese medicine, anti-oxidants, hyperthermia, bee venom, naturopathy and homeopathy), physicians should be prepared to address questions regarding these topics.
Fibromyalgia
The outcome of treating fibromyalgia secondary to Lyme disease with nonantibiotic regimens has been poor. The most encouraging clinical trial showed success in only one of 15 patients and only modest improvement in 6 of 15 individuals with fibromyalgia despite 2 years of treatment.
Antibiotic therapy has been much more effective than supportive therapy in symptomatic patients with fibromyalgia secondary to Lyme disease.
Fibromyalgia treatment alone without antibiotics raises the risk of conversion to refractory chronic Lyme disease and/or exacerbation of an undiagnosed persistent infection and is not recommended. Increasingly, clinicians do not feel comfortable treating fibromyalgia in Lyme disease without antibiotics.
Decision to Stop Antibiotics
Several studies of patients with Lyme disease have recommended that antibiotics be discontinued after 30 days of treatment. Complicating the decision to stop antibiotics is the fact that some patients present with disease recurrence after the resolution of their initial Lyme disease symptoms. This is consistent with incomplete antibiotic therapy. Although the optimal time to discontinue antibiotics is unknown, it appears to be dependent on the extent of symptomatology, the patient's previous response to antibiotics, and the overall response to therapy (see below).
Rather than an arbitrary 30-day treatment course, the patient's clinical response should guide duration of therapy. Patients must therefore be carefully evaluated for persistent infection before a decision is made to withhold therapy.
The decision to discontinue antibiotics should be made in consultation with the patient and should take into account such factors as the frequency and duration of persistent infection, frequency of recurrence, probability of refractory Lyme disease, gains with antibiotics, the importance to the patient of discontinuing antibiotics, and potential for careful follow-up.
The ideal approach would be to continue therapy for Lyme disease until the Lyme spirochete is eradicated. Unfortunately there is currently no test available to determine this point. Therefore, the clinician must rely on the factors outlined above to decide on the length of antibiotic therapy for chronic Lyme disease.
Alternative Antibiotics
There is compelling evidence that Lyme disease can result in serious and potentially refractory illness. Use of alternative antibiotics to treat early Lyme disease with erythema migrans is generally not indicated unless coinfection is suspected.
The ILADS Working Group believes that the risk of alternative antibiotics is acceptable in selected Lyme disease patients presenting with chronic Lyme disease. Alternative antibiotics include less commonly used oral antibiotics (cefixime, cefdinir, metronidazole) and intravenous antibiotics (imipenem, azithromycin). The role of alternative antibiotics in low-risk patients is less certain and there is less consensus among the guideline developers as to whether the potential benefits outweigh the risks.
Therapy for Coinfection
Therapy for polymicrobial infection in Lyme disease is a rapidly changing area of clinical practice. Uncomplicated Lyme disease may be managed without addressing coinfection by means of standard oral or parenteral antibiotic therapy. Some but not all experts recommend therapy for subclinical or chronic coinfection with Ehrlichia, Babesia, or Bartonella on the basis of their belief that responses are more prompt with this approach.
The dose, duration, and type of treatment for coinfections have not been defined. Published reports of coinfection are limited to a small number of patients treated in open-label, nonrandomized studies. Doxycycline has been indicated for Ehrlichia. A recently published randomized trial determined that treatment of severe Babesia microti with the combination of atovaquone and azithromycin was as effective as the use of standard oral therapy with clindamycin and quinine.
The decision to use alternative antibiotics should be based on the individual case, including a careful assessment of the patient's risk factors and personal preferences. Patients managed in this way must be carefully selected and considered reliable for follow-up. Further controlled studies are needed to address the optimal antimicrobial agents for coinfections and the optimal duration of therapy.
Posts: 77 | From USA | Registered: Feb 2006
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bettyg
Unregistered
posted
Hi Tree,
please add this thread from Melanie Reber to her other posts on your page 4 of newbie links with this title please:
But you LOOK good! Wrong thing to say to a person with CHRONIC ILLNESS.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Done its on page 4 right before P 5. Under Melanies stuff
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
It tells about the brain and all testing for it. Exceptional is the Brigham/HARVARD site shown that has SLIDES showing MRI, CT, etc.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Here's more goodys! A typical response to newcomers.
New as of 3/27/06 Top of page
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Wonderful answer back from ANIEK, a future lawyer, with his answer if employer's have the right to ask why employees will be off for surgery & specificaly what ....
posted
Tree, below is a poem/story written by lyme league owner, PJ Langhoff, and how her lyme disease has affected her.
A good one to print off to hand to family/friends who say YOU DON'T LOOK SICK. Tree, perhaps this could be added right in the area where you have these 2 stories. It will touch your hearts as it has ours. Thanks Tree.
Please consider adding it to your site. The prose is well received by the lyme community and it would be an honor to post it on your board.
PJ Langhoff
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by lymelighter2: Hi "Tree"? Is it? I don't know if this is the right place, but here is the correct information for you to consider posting.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Someone brought up Tincup's very detailed CRANIAL NERVES post, so I took the time and DOUBLE spaced it as well as breaking up the long paragraphs. Can you mention to folks when they go there & see TC's single spaced essay, that there is a double-spaced user-friendly version there as well. Thanks Tree! Have a great week.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by bettyg: Morning Tree,
Someone brought up Tincup's very detailed CRANIAL NERVES post, so I took the time and DOUBLE spaced it as well as breaking up the long paragraphs. Can you mention to folks when they go there & see TC's single spaced essay, that there is a double-spaced user-friendly version there as well. Thanks Tree! Have a great week.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Fixing links some are gone did the best I could.
Betty Abbot Lab Reports on page 4
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Tree, thanks for latest updates. Sorry to hear some were lost in translation, but that's life.
Took a look at the list; still looks wonderful & so informative.
Tree, I don't know if you saw my lengthy post about my new LLMD out of state I saw last Thursday and the 18-20 vials of blood she took for testing everything under the sun on food allergies, mold, mercury, magnesium, and regular lyme stuff.
I listed ALL the blood labs done by lab sent to & specialty it was to be tested for as well as some current $$. If you think that might help anyone, please add to your newbies list in the future.
Thank you for your LABOR OF LOVE to keep this going & up to date!
from your humble servants/lymies, Bettyg
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Updated: 5/15/05
Drug Interactions and Other Drug Info Drug Digest & Interactions Drug Interactions including prescriptions, over-the-counter drugs, herbals and vitamins On page 3
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Tree another COMPUTER TIP from Ann-Ohio on SUPER WIDE POSTS on reading them! Wonderful!
Ann - Ohio shared this tip with me to read SUPER-WIDE posts, and it's posted below.
I'll copy it to Treepatrol's newbie links asking him to add it to his computer area & also will show in COMPUTER QUESTIONS on lymenet.
READING SUPER WIDE POSTS FROM ANN:
It is not on the front page of the site, or even the second page.
First you have to go to something that has been posted, like something that is very, very wide and is driving you nuts, or actually anything that has been posted on any of the boards.
Then you should see the following at the bottom of the page with the original post and all the responses to it:
Printer-friendly view of this topic Hop To: Select a Forum: If you click on "Printer-friendly view" you will get a readable version of the person's too-wide posted material.
Would you post this link I found tonight from Iowa State University's Entomology Dept. showing photos of ALL TICKS in various stages and having something by each for comparison purposes.
Also, for those LIVING IN IOWA, if you find a tick, send it to ISU TO DO A "NAME TICK SURVEY" ON FREE! for those LIVING IN IOWA, if you find a tick, send it to ISU TO DO A "NAME TICK SURVEY" ON FREE!
For those living OUTSIDE OF IOWA, they give you some suggestions to use to send tick to YOUR state's entomology dept.
They had details about these ticks in Iowa: BAT, DOG, AND DEER TICKS.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by bettyg: hi Tree!
Would you post this link I found tonight from Iowa State University's Entomology Dept. showing photos of ALL TICKS in various stages and having something by each for comparison purposes.
Also, for those LIVING IN IOWA, if you find a tick, send it to ISU TO DO A "NAME TICK SURVEY" ON FREE! for those LIVING IN IOWA, if you find a tick, send it to ISU TO DO A "NAME TICK SURVEY" ON FREE!
For those living OUTSIDE OF IOWA, they give you some suggestions to use to send tick to YOUR state's entomology dept.
They had details about these ticks in Iowa: BAT, DOG, AND DEER TICKS.
Thanks Tree!
yep
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Hope you are feeling better than the other day when we talked.
What all did you add when you updated today? I did notice the ISU TICK PHOTOS were added. Thank you my dear friend.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
added link on mycoplasma abx to page 3.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Top page 4. warning on epson salts added
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Images of borrelia in Alzheimer's disease Key Terms for Lyme
Questions about duck clinics in the northeast
The National Lyme disease Memorial Park Project
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Updated Page 4.Non-Tick Transmission
Garlic Proper way to eat it Garlic Warning Epson Salts Discussion Warning about Epsom Salts Check Diet Link Atkins Diet Atkins Carb Counter PDF Artificial Sweetners Side Effects? PORT-A-CATH (catherter) Abx's Port
Sexually Transmitted ??? Transmitted Through Sex? Sex Question-Serious-Adult Content Talking Transmission ?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
a light bulb momenet after I started reprinting your latest editions to your links...
1st, I just write on my copies what updates Tree has done since I asked him to show in the replies what his updates to the list are so "frugal" folks like myself don't have to keep reprinting over & over since he does this weekly/biweekly/monthly depending on amount of NEW stuff to add.
If you are printing this, like I did; don't just screen print it! It showed 50% across of stuff taking 33 pages to printing in my LARGER FONT reading style for me.
INSTEAD CHOSE THIS: Go to the bottom of Tree's 1st screen of info. Go to lower LEFT hand corner, and click on PRINT FRIENDLY USER COPY or something like that. It uses the entire screen width, so less pages will be used! light bulb!! Bettyg
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
newly added
Sexually Transmitted ???
Is our saliva contagious?
Proper Tick Removal Proper Tick Removal
Colon Cleanse Colon Cleanse discussion Polls here on everything New Poll: What's the most outrageous thing a doctor has actually said to you?
Studies Scottish lab admits that 33% of negative Lyme test results should be positive Roundtable on Evidence-Based Medicine Fighting Back: How Borrelia burgdorferi Persists
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Again, this is a NEW business adventure and they are getting their feet wet but want to make this "competitive" to BUILD their business clientele.
I can't think of anyone more deserving of this than my LYMEnet friends! Please pass the word along to anyone you know who needs COMPOUNDED PHARMACIST ok! Bettyg
It's my DETAILED list of LYME BROCHURES from LDA, LD Foundation, Igenex western blot igm/igg, my lyme brochure, and I typed a very detailed list of what was in the various brochures available. Thanks Tree for the outstanding job you do on the newbie's list & ALL THE TIME it takes for you to do it well! Bettyg
posted
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.
Tree, please post this! Lymefighter's 6th post tonight in medical talked about feeling suicidal.
Could you approach LOU B about having this suicide hotline at the top of EACH of the sections here?
I know he'll be unhappy with me when he gets back from vacation and finds I posted my email to him stating the reasons I felt PJ Langhoff should be reinstated from banning, and then his response to me on the board. I'm staying my distance from him for awhile.
SUICIDE, however, can NOT be ignored!
If you end up putting in your LINKS, could it be right up there at the BEGINNING of all the links instead of being buried. I spent 20 minute looking thru my phone book tonight before I found a local crisis no. who lead me to 2 more folks before I got this national suicide hotline phone no. Thanks for understanding Tree! Bettyg
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treepatrol
Honored Contributor (10K+ posts)
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posted
updated betty NATIONWIDE SUICIDE HOTLINE and DETAILED list of LYME BROCHURES
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Adaptogens Adaptogen Test Adaptogen Rhodiola rosea
Adaptogens PubMed Page four at bottom.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Would you add that to your post collecting other state's comp. pharmacy info? Thanks tree.
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bettyg
Unregistered
posted
Hi Tree, can you add this to your links under MINOUCAT'S DISABILITY INFO ....
separate entry:
CONNIE MC'S "DISABILITY LETTERS FROM MD FOR SSDI/SSI PURPOSES"
[her actual response is in Ann-Ohio's medical response to DISABILITY LETTER]...
I made a few format changes adding bullets for clarification of IMPORTANT points not to be overlooked when furnishing DDSI ifo.
Connie Mc, lymenet.org
I wrote the following for my LLMD:
Guidelines for Use in Writing Letters/Reports in Support of Social Security Benefits for Patients With Tick-borne Diseases
By: Connie MS, CRC, CVE, CCM, from www.lymenet.org Disability Advocate
General principles of focus to consider when preparing this report:
1. The report/letter must have a longitudinal perspective that allows Disability Determination Services (DDS) to see the frequency, duration, and recurrence of major symptoms of tick-borne diseases. Medical records will generally show this, but a letter needs to state the general course of disability thus far, as well as the projected length of the disabling condition.
2. The report/letter must include descriptions of all treatment regimens and responses to therapy must be given; example:
oral antibiotics, and general response. Did this result in limited improvement, which necessitated the initiation of intravenous therapy?
3. The report/letter must include any significant restrictions the patient has experienced in his/her normal activities since the onset of the diseases.
Here, we are asking the physician to describe changes in lifestyle, such as: household, personal care, and social activities, as may be determined through history. Also, the physician can report any observed limitations; such as, walking, climbing, etc. as the patient functions in the exam room. A ``Incapacity Checklist'' can be helpful, and the physician can have the patient complete this for reference before the support letter is written. (A copy is at the end of this document). The patient needs to provide specific examples of limitations in function, which the doctor can document in the letter. The advocate can then obtain supporting statements from others (friends, family) to confirm what the patient has reported to the doctor.
4. The report/letter must report on any objective testing which has been done to determine the appropriate diagnosis. For example, any positive lab studies, and other supporting evidence such as positive SPECT scan results, positive findings of joint inflammation on x-rays, etc. Any testing which supports the presence of illness is acceptable. Includes the clinical examination, not just lab studies.
Once the above is established, the physician must then identify and describe the most significant and disabling symptoms frequently associated with TBD, tick-borne disease. For example:
1. Fatigue - the existence of chronic and/or recurrent debilitating tiredness, which is demonstrated by an inability to perform basic minimal tasks of daily living (ADLs).
2. Neuropsychological - the existence of forgetfulness and distractability, inability to concentrate, memory impairments, confusion, difficulty thinking, photophobia
3. Neurological - numbness and tingling, sensory impairment.
4. Pain - recurrent and chronic pain which significantly impedes the performance of ADLs and unrelieved by prescribed treatment.
Location of such pain and any objective findings utilized to diagnose the origin of such pain. This includes: chronic headaches and myalgia.
5. Sleep disorder - Any disruption of normal sleep patterns that is recurrent and does not respond to treatment.
6. Depression - Is depression primary or secondary? Is it related to the patient's reaction to the daily physical symptoms? Are there other psychiatric symptoms present which are apparent to the physician?
7. Cardiac - heart block, hypertension, and other cardiac complications.
Sample Letter
Re: DOB:
Please be advised that I have provided medical care for Ms. Blank since 5/7/2003. Ms. Blank carries a diagnosis of persistent Lyme Disease made on the basis of a number of clinical features, including: marked fatigue, chronic relapsing pain, CNS irritability, nonrestorative sleep and severe cognitive dysfunction.
This patient is disabled by incapacitating fatigue and myalgias aggravated by repetitive or sustained physical activities.
Her symptoms are consistent with her disease, which has been confirmed by positive IgM Western Blot in May of 2003. There is also evidence on examination of persistent disorganization of motor function as evidenced by peripheral nerve dysfunction.
She frequently becomes confused during discussion of treatment recommendations, and must rely on others to insure she has information she needs to proceed with recommended treatment. Ms. Blank has had marked impairment of her daily activities and finds it difficult to get out of bed on most days. She routinely requires assistance with showering and dressing. She uses a cane for ambulation. She cannot stand for more than 5 minutes to prepare meals, and must obtain assistance from others. She cannot lift or carry dishes or a gallon of milk. She cannot vacuum or mop or garden. She is unable to do laundry. She has difficulty managing her medication and must receive assistance from others to make sure she takes the recommended medications at the recommended times. She has difficulty getting in and out of a car and is unable to drive due to cognitive dysfunction.
Ms. Blank has been treated vigorously with oral antibiotics as well as supplements and other supportive care. There has been limited improvement thus far, and therapy with intravenous antibiotics is recommended for the near future.
By reason of the unpredictability of the frequency of her multiple physical symptoms, Ms. Blank has been totally and permanently disabled from engaging in, and more importantly, in sustaining any gainful employment activity, even light part-time sedentary work at home.
Ms. Blank's status has been consistent since I first began seeing her in May of 2003.
It is my opinion that she is likely to remain disabled for the foreseeable future, but, in any event, for not less than 12 consecutive months. Prognosis remains guarded and uncertain.
Sincerely,
Name: ____________________________Date: _________
Incapacity Checklist
How does your condition affect:
1. Your daily activities
2. Your ability to stand, sit or walk for a long period
3. Your ability to lift or carry weight
4. Your ability to understand, carry out, and remember instructions
5. Your ability to respond appropriately to your supervisor and coworkers
6. Other physical or psychological functional restrictions
7. Your ability to adjust to the stress of a work environment
Anyone who wants to provide this to their LLMD for use is more than welcome to do this .
I have used this same format many times and DDS and ALJs seem to be receptive to it. It includes all the information SSA is looking for to help them allow claims. Connie
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
done betty
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Updated a bunch
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
updated page 3
Page 3. Flagyl,= List of ****dazole's that I have found Cyst's Treatment
ABX= Antibiotics ABX's SpreadSheet {Compounding Pharmacy} Give me your links to each State,Local.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
The top 10 things most important to know about lyme tx The Top 10
updated p 5.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Updated section on troll behavior.
Interested in what Trolls are? 1. 1
2. 2 3.Sorry to See it 4.Sorry to See it Happening pq's Article on Trolls The latest example 9/12/06
The highlighted bold one is the updated near bottom of page 5.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
page 3 update
Alzheimer's Images of Borrelia in Alzheimer's Cave76 Borrelia in Alzheimer's disease Elderly Alzheimer's Dr Macdonald's Pod Cast Plaques in Alzheimers Not Just ALZ
Dr Macdonald's Pod Cast Plaques in Alzheimers resurrect the NeuroSyphilis Literature
ALS
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I have been trying to hold my end up since went the more direct route TC good to cya here
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam on vacation from 10/07/2006 until 10/16/2006
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
please add as time permits Tree! Hoping you're enjoying all the fall foliage colors everywhere you go...Bettyg
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treepatrol
Honored Contributor (10K+ posts)
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posted
updated page 5.
Interested in what Trolls are?
Lou B's Troll Link
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Flouroquinolones, and Quinolones by PQ 1
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-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
updated your gona have to seach to see whats new this time!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Betty Suggested I bring this to your attention:
Hello fellow Lymies, I've been reading the posts about citruslyme, and know others are in need...
I don't know why this didn't dawn on me earlier (probably the neuro problems), but there's a website called Live for the Challenge ( liveforthechallenge.com ) that is a registry for "everyone wo is currently struggling with medical difficulties."
Basically, those who register, pick out things that they need to survive, and people come around, read about you and your needs, and donate what they can. The perk to this is that people know exactly what you need.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
updated
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Tree, would you add this next time; DON'T think you have anything about EDEMA swelling like BBS has. HOPE YOU ARE BEGINNING TO FEEL BETTER! Bettyg
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posted
We were able to purchase the following Rocephin (Ceftriaxone) and infusion supplies from a pharmacy in Anaheim California.
The total cost is $1300 and the supplies are for 30 days.
Of course we had to provide a prescription from our LLMD and the pharmacy required a credit card payment up front.
Our health insurance company has already denied payment on these supplies more than three months ago.
I have to mix the antibiotic and sterile water, load all of the syringes and make sure everything stays sterile, but compared to the $760 per week cost of our previous supplier, it's well worth the effort.
Unfortunately I haven't received a cost per item breakdown on the supplies.
1. Ceftriaxone 2 Gram Vial Powder Form - 30 each
2. Sterile Water 20ML Vial - 30 each
3. Sodium Chloride 0.9% 30ML Vial - 22 each (10ML NaCL for each flush - 30 X 22 = 660ML total, enough for 66 saline flushes)
4. Heparin flush 30ML Vial - 5 each (5ML Heparin at end of each infusion - 30 X 5 = 150ML total, enough for 30 flushes)
5. IV 12'' extension tubing - 10 each (Change extension each time bandage changed)
6. Syringe 20 ML - 30 each (Used for reconstituting antibiotic and for infusion)
7. Syringe 10 ML - 90 each (Used for infusing saline and heparin)
8. Dressing Change Kits with Chloral Preps - 5 each 9. Alcohol prep pads - 200 each 10. Latex Gloves - 100 each 11. Sharps Container 8 Qt size - 1 each 12. 18gauge X 1'' needles - 30 each 13. Stat Lock dressing - 5 each
The procedure for infusing the antibiotic is always:
SASH
Saline - Antibiotic - Saline - Heparin
I'm certainly not a medical doctor, nurse or anything else other than a father with a daughter who needs my help.
I have had several extensive classes in first-aid over my 25 years in the military.
But to be honest with you, my daughter does her own infusions about half the time.
In addition, she's even been doing her own dressing changes. She's had the PICC line since June 13th and it still looks great.
When or if I get a complete itemized cost breakdown I'll share it with you.
I hope this has been beneficial for some of you. I do know the Rocephin has worked wonders for our daughter. She's gone from a stooped over zombie in great pain to at least a human being again.
We still have a long road ahead, but we can see the light ahead. Thanks to all of you on this board who have helped with your knowledge, encouragement and prayers, they're working.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
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posted
up dated
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Fixed a bunch of links and added new ones. Sorry I havent been doing much lately but this is the first day since my vacation return {{oct19th till nov 13th}}that I havent felt really bad. I started feeling relly crappy even before mepron&biaxin xl treatment started nov4th/06 now Iam hoping its effecting whatever I have.I havent been sweating hardly at all thank god. I even stained front porch posts and allmost all the railing on 11/10-11/06 and no sweating but really sore whew. I hope this continues to get better.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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