Here's more goodys! A typical response to newcomers.
Page 1.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and
foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
The following is information on diseases known to be transmitted by ticks. Multiple infections may be transmitted at one time by a single tick, lymeinfo.
Western Blot and Elisa tests explaining differences between tests developments and this guy uses both antigens from cultured Bb and Cultured from mammal blood give it a listen Here
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )
See this ( . )thats the size of the larva stage tick...
Beneficial Flora: Bifidobacterium bifidum, B breve, B infantis, B lactis, B longum,Lactobacillus acidophilus, L brevis, L bulgaricus, L casei, L gasseri, L plantarum, L paracasei, L rhamnosus, L salivarius, Lactococcus lactis, Streptococcus thermophilus
"In North America, Lyme disease and endemic relapsing fever pose the greatest threat to human health and have received the most attention of the borrelial diseases. Approximately 14,000 cases of Lyme disease are reported in the United States each year; however, the actual number of cases may be 10-fold higher (2)."
"The findings in this report are subject to at least three limitations. First, because LD is reported through passive surveillance, LD is underreported, and the distribution and demographics of reported cases could be biased. Second, LD is underreported in areas where disease is endemic and might be overreported in areas where disease is nonendemic. Third, not all LD patients present with typical manifestations; other conditions might be confused with LD and laboratory testing might be inaccurate."
"As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported. Studies in Connecticut and Maryland estimated 7--12 unreported cases for each reported case (20,21). Additionally, the case definition has limitations of sensitivity and specificity."
Here's another outstanding site! It tells about the brain and all testing for it. Exceptional is the Brigham/HARVARD site shown that has SLIDES showing MRI, CT, etc.
The information presented above is for informational purposes only. No information should be considered medical advice. Any information provided should not be used to take the place of advice from your personal physician or other professional. Links to other sites are provided for ease of research. Information on those sites is the opinion of those who publish the sites and is not necessarily that of treepatrol or of lymenet.
Please PM me of bad links
[ 29. May 2008, 10:25 AM: Message edited by: Lou B ]
Posted by treepatrol (Member # 4117) on :
To the top.
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by HEATHERKISS (Member # 6789) on :
up
Posted by bg (Member # 46416) on :
hi Tree,
You'll want to edit your list.
Art Dougherty took down his 300 OTHER illnesses mimic lyme disease sometime this past 30 days.
bettyg
Posted by ivebinlymed2 (Member # 7330) on :
Up for Dbag. Treepatrol is a true lifesaver. You will learn a lot here Deb!
Posted by treepatrol (Member # 4117) on :
upfixing some links
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
up for weekend
Posted by bg (Member # 46416) on :
Treepatrol, would you add Ann's breakdown to your newbie links info on Bowen? Perhaps you could list it UNDER BOWEN, QRIBB. =====================================
They were very specific to me with my posting this on the web that the below breakdown of the pages they fax/mail are for BOWEN ONLY!
Tree, QRIBB name is very confusing for someone knew....no one would know it actually means Bowen labs in Florida. Could you rename that one:
example, Bowen - QRIBB...thanks tree!
Bettyg
Hi folks,
Using Ann's wonderful suggestion, I emailed Bowen, and here is what I received back promptly today!
"All the pages that were faxed to your pcp is not for him.
Breadown:
pg 1 letter of Protocol physisican 2 information page about test 3 letter to office manager 4 protocol for lab if blood is collected in pcp office 5 Final Report Request is the ONLY page that the physician is require to sign and sent to us 6 copy of patent for our test 7 protocol for patient to take to outside lab to have blood drawn 8 is kit order form for the blood test(our kit consist of 2 tubes, stryoform & mailing sleeve not necessary unless lab requires it) 9 thru 13 is paperwork that the PATIENT needs to fill out and RETURN with the blood once it is drawn for us.
The cover page that is faxed with the protocol explains to KEEP the last seven pages for master file copy for other patients.
If after this breakdown and you still have problems, have them to call the office back 727 937 9077 and I will try to help them understand the paperwork.
This is the protocol for all physicians, this is the first time that I have had anyone to say that all the pages were for the physician.
Please email me back if you still have a problem. Alice, Bowen labs"
bettyg, Iowa
[This message has been edited by bettyg (edited 12 July 2005).]
Posted by shassler64 (Member # 3479) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
updating
Posted by bg (Member # 46416) on :
Tree,
I just edited my note on BOWEN labs 13 pages they fax/mail MD.
Changes are for NO. 8 and renaming your QRIBB to show BOWEN - QRIBB so newbies know at a glance you mean Bowen labs; not qribb lab.
Would you show the BOWEN BREAKDOWN as a separate entry under Bowen - QRIBB?
Bowen's office staff were very specific to me since I informed them I was posting their breakdown on lymenet and you would be putting their info on the newbie links under Bowen; NOT other labs.
`````````````````````````````````````````````
Treepatrol, would you add Ann's breakdown to your newbie links info on Bowen? Perhaps you could list it UNDER BOWEN, QRIBB. =====================================
They were very specific to me with my posting this on the web that the below breakdown of the pages they fax/mail are for BOWEN ONLY!
Tree, QRIBB name is very confusing for someone knew....no one would know it actually means Bowen labs in Florida. Could you rename that one:
example, Bowen - QRIBB...thanks tree!
Bettyg
Hi folks,
Using Ann's wonderful suggestion, I emailed Bowen, and here is what I received back promptly today!
"All the pages that were faxed to your pcp is not for him.
Breadown:
pg 1 letter of Protocol physisican 2 information page about test 3 letter to office manager 4 protocol for lab if blood is collected in pcp office 5 Final Report Request is the ONLY page that the physician is require to sign and sent to us 6 copy of patent for our test 7 protocol for patient to take to outside lab to have blood drawn 8 is kit order form for the blood test(our kit consist of 2 tubes, stryoform & mailing sleeve not necessary unless lab requires it) 9 thru 13 is paperwork that the PATIENT needs to fill out and RETURN with the blood once it is drawn for us.
The cover page that is faxed with the protocol explains to KEEP the last seven pages for master file copy for other patients.
If after this breakdown and you still have problems, have them to call the office back 727 937 9077 and I will try to help them understand the paperwork.
This is the protocol for all physicians, this is the first time that I have had anyone to say that all the pages were for the physician.
Please email me back if you still have a problem. Alice, Bowen labs"
bettyg, Iowa
Posted by treepatrol (Member # 4117) on :
up
Posted by bg (Member # 46416) on :
Hi Tree,
THANKS so much for your prompt action on adding the Bowen info I received & changing the headings making it user-friendly for all.
YOU ARE WONDERFUL for giving up so much time to be adding/modifying newbie links as needed!
Up for snodude
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
updating
Posted by treepatrol (Member # 4117) on :
updating
Posted by Loribelle (Member # 6293) on :
up for my sister... Love you, Cheribelle!
Posted by treepatrol (Member # 4117) on :
updating
Posted by treepatrol (Member # 4117) on :
up for SForsgren
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
up for the weekend. Posted by minoucat (Member # 5175) on :
^
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by mbroderick (Member # 5220) on :
up!!!
Posted by treepatrol (Member # 4117) on :
I will update whenever we get that ability back.
Posted by treepatrol (Member # 4117) on :
up maybe last time
Posted by Corgilla (Member # 4066) on :
.
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
Finally updated
Posted by minoucat (Member # 5175) on :
^
Posted by treepatrol (Member # 4117) on :
updated
Posted by Angela Bachmann (Member # 43) on :
up
Posted by shassler64 (Member # 3479) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
.
Posted by DJP (Member # 5893) on :
Up
Posted by treepatrol (Member # 4117) on :
up
Posted by Pocono Lyme (Member # 5939) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by shassler64 (Member # 3479) on :
up
Posted by shassler64 (Member # 3479) on :
up
Posted by treepatrol (Member # 4117) on :
up
Posted by treepatrol (Member # 4117) on :
updating
Posted by shassler64 (Member # 3479) on :
up
Posted by seibertneurolyme (Member # 6416) on :
To the top for CMarie
Bea Seibert
Posted by treepatrol (Member # 4117) on :
Up editing is back fixed
Posted by treepatrol (Member # 4117) on :
Posted by treepatrol (Member # 4117) on :
Posted by treepatrol (Member # 4117) on :
Posted by WildCondor (Member # 434) on :
Can we make this post stay at the top of the board for good? Can't the moderators just keep it up there? Thanks tree! Posted by bettyg (Member # 6147) on :
Hi Tree!
I'm so glad they put your NEWBIE LINKS at the top of medical as we had suggested for a long time.
Now I have a BIG favor to ask of you Tree.
I'm so glad you also implemented my suggestion to put the current date on list when you have added.
BUT now I have another favor to ask you to consider.
Only you knows for sure what you are adding each time to your extensive, invaluable list, would you consider the following:
1. Show the new topic headings you are adding at the very top of the list before your updated date of 10-3-05?
This way those of us who have been around awhile and have been reading your extensive list can save time by going exactly to your NEW links vs. trying to find what is new in the 7-8 pages of total links?
2. Next time you add links, move the other links to where you want them to go, and then show the new links again above the current date of list.
All of our time is very precious on internet, and each of us wants to use our time wisely.
Tree, thank you for considerating my request of you in order to help ALL of us faithful newbie readers.
bettyg, Iowa
Posted by bettyg (Member # 6147) on :
Hi Tree, me again!
Happy holidays to you & wife...hope she is doing much better now.
Glad they have your post at the top and it STAYS there...saves all that bumping.
Tree, I have another suggestion to you since you show the latest date of your UPDATES.
Please reread my May suggestion to you.
Since that wasn't done....here's my new suggestion.
Could you just REPLY to your post and show whatever is NEW is being included in that NEW UPDATE?
For example, posting reply
added 2005 Dr. B. guidlines, newest CDC developments, etc.
This way I/others could go to the last page and NEWEST reply to read what you added vs. having to look at ALL 8+ pages of the newbie links.
I'm confused as is....sorry; lyme mind! THANK YOU!
Posted by treepatrol (Member # 4117) on :
Betty like this? Updated on 12/30/05 just under welcome in newbie links.
If you have been treated for lyme or you think you have beat it read this below.
Treepatrol, CONGRATS on doing what I asked of you! This is EXACTLY what I had in mind as I saw you updated the site again.
So I went to your 1st screen of sites & noticed a few dates but not the 12-30-05. This will help me tremendously!!
I wonder how we can get the word out to others except your starting a new post saying you are showing the individual additions or changes to the NEWBIE LINKS and they will be found on the LAST page, last entry...use the "new comments shown" ... sorry can't remember the wording for it there.
Thank you Tree for working with me on this to save us all time but to know in a quick manner what you added to all these valuable lyme links!
Hope you are feeling better now than the post from the other day when you are overwhelmed. Also, do NOT let keeping your list up to date stress you out ok; we APPRECIATE EVERYTHING YOU DO ON THIS LIST, and sharing your expertise/experiences with us all!
God bless you Tree & Mrs. Tree; hope she is better now too.
Posted by mbroderick (Member # 5220) on :
up, and up, and up!!!
Posted by treepatrol (Member # 4117) on :
Hi Tree, I posted yesterday, but my reply went to never land!
If you do NOT have Tincup's web site below about her detailed EYE problems symptom list/post, would you add to newbie list? It's very detailed plus other folks tell other problems too....thanks!
Trueblue posted this yesterday,
"TC hasn't been around in a while but I searched and came across this old topic of hers.
It's a couple of years old but sure covers a lot of eye problems.
Entirely too many that I have at this point. I need to reread but can't right now. I hope it helps. "
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by bettyg: Hi Tree, I posted yesterday, but my reply went to never land!
If you do NOT have Tincup's web site below about her detailed EYE problems symptom list/post, would you add to newbie list? It's very detailed plus other folks tell other problems too....thanks!
Trueblue posted this yesterday,
"TC hasn't been around in a while but I searched and came across this old topic of hers.
LUCY BARNES/TINCUP'S personal story...very detailed TC's Story
Page 1.
Posted by bettyg (Member # 6147) on :
Hi Tree! Have you recouped from all the excitement I gave you all Thurs.? Hope so.
Carol had this wonderful info in my emergency herx post that I thought would be good in your newbies info ... locating a member without having ALL the info needed. Please add if you feel it qualifies for what you've done. Thanks Tree. Try it on yourself ok.
[QUOTE]Originally posted by Carol in PA: If you know her last name, you can do a search on the white pages, for Iowa.
Just a thought. I have no idea if the surname is common or not. If there are only a few, I would call some of them, might get a relative or something.
Hmmm, better probably to call the local police department, once you know the town. Carol [QUOTE]
EVERYONE: PLEASE ADD ABOVE WEB SITE TO YOUR FAVORITES/BOOKMARK. I never heard of this before. I used it typing in my 1st & last name plus Iowa. It brought up 2 of us; I was no. 1 listed. I was really impressed. Thanks Carol for providing a valuable resource in an EMERGENCY!
Bettyg, Iowa
Posted by bettyg (Member # 6147) on :
Early morning to you Tree,
could you add my sympathy poem collection to your links .. at end?
Sooner or late we all experience it, and they may help others who are losing their loved ones.
I did a search earlier & couldn't find them. Did it again for 100 days...there they were. Thanks for your consideraion Tree.
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.
On page 3 update MS links on 3/1/06
Posted by bettyg (Member # 6147) on :
Evening Tree,
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!
Good morning Tree! Thank you for positing Megan's LYME/MS/BC thesis and the positive pause! I appreciate it.
Hope this finds you/wife doing ok right now. Bettyg
Posted by blueskyfaith (Member # 8723) on :
Brief Summary GUIDELINE TITLE
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.
Posted by bettyg (Member # 6147) on :
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.
It tells about the brain and all testing for it. Exceptional is the Brigham/HARVARD site shown that has SLIDES showing MRI, CT, etc. Posted by treepatrol (Member # 4117) on :
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 ....
morning Tree; are you "hung" over today after your big BD celebration yesterday?
What all did you add to your revision today? Was it just the links I showed at the bottom of replies OR MORE than that.
I use your reply area w/new info & write it in on my printed copy vs. printing it each time you update entire list. Thanks Tree.
Bettyg
Posted by bettyg (Member # 6147) on :
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
Posted by treepatrol (Member # 4117) on :
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.
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
Its Posted at the bottom of Newbie Links.
The face of lyme from someone who knows --the patient THE FORGOTTEN
Puter stuff Enlarge Print Posted by bettyg (Member # 6147) on :
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.
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.
MAY IS NATIONAL LYME DISEASE AWARENESS MONTH by Lucy Barnes aka TINCUP March 2006 TC & Betty's Upgrade Article 9 Points Betty to Tincup, breaking this up for us neuro lymies NeuroLymies Posted by bettyg (Member # 6147) on :
Tree, have you hidden all your Easter eggs yet for the kids?
If you get a chance, will you look at my post about Abbott Labs 2005 reports/meds and have they ever tested WB there?
My pc is acting up and I lost the location line where the web site is, so can't copy/paste for you below. thanks for your consideration.
You/Mrs. Tree have a good one; we'll celebrate quietly.
Bettyg
Posted by treepatrol (Member # 4117) on :
Fixing links some are gone did the best I could.
Betty Abbot Lab Reports on page 4
Posted by bettyg (Member # 6147) on :
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
Posted by treepatrol (Member # 4117) on :
Drug Interactions and Other Drug Info Drug Digest & Interactions Drug Interactions including prescriptions, over-the-counter drugs, herbals and vitamins On page 3
Posted by treepatrol (Member # 4117) on :
Carol in PA responded to a computer problem I had and gave this wonderful TIMESAVING TIP on reading posts.
Could you post it in your links? I believe a computer Q/A was at the end of your links.
Okay, you guys REALLY need to know about the "shift click" method.
When you want to click on a link, you can open the link in a new window by doing this:
Press down the "shift" button with your left hand, and left click on the link with the mouse in your right hand.
This opens the link in a new window.
When you're done reading, just click on the x in the upper right corner to get rid of the window.
This saves tons of time. Carol in PA
Bettyg
Posted by bettyg (Member # 6147) on :
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.
left hand had a lot of info; I noticed 3M deet product that MILITARY uses!
Bettyg
Posted by bettyg (Member # 6147) on :
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!
Posted by treepatrol (Member # 4117) on :
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
Posted by bettyg (Member # 6147) on :
Good morning Tree!
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.
Posted by treepatrol (Member # 4117) on :
added link on mycoplasma abx to page 3.
Posted by treepatrol (Member # 4117) on :
Top page 4. warning on epson salts added
Posted by treepatrol (Member # 4117) on :
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 ?
Posted by bettyg (Member # 6147) on :
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
Posted by treepatrol (Member # 4117) on :
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
Posted by bettyg (Member # 6147) on :
Tree, can you add this? I don't think we have anyone shown in your list for a COMPOUNDING PHARMACIST, correct? Thanks! Bettyg
For all interested, here is the name and phone no. of the NEW compound pharmacy in my area.
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
[ 09. August 2006, 12:32 AM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
Tree, would you add this liink next time:
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
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
Posted by treepatrol (Member # 4117) on :
updated betty NATIONWIDE SUICIDE HOTLINE and DETAILED list of LYME BROCHURES
Posted by treepatrol (Member # 4117) on :
Adaptogens Adaptogen Test Adaptogen Rhodiola rosea
Adaptogens PubMed Page four at bottom.
Posted by bettyg (Member # 6147) on :
Tree, I just EDITED my Iowa compounding pharmacy info and added this:
Would you add that to your post collecting other state's comp. pharmacy info? Thanks tree. Posted by bettyg (Member # 6147) on :
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
[ 14. August 2006, 12:00 AM: Message edited by: ConnieMc ]
Posted by treepatrol (Member # 4117) on :
done betty
Posted by bettyg (Member # 6147) on :
Cave and Tree, I copied & pasted Minou's link letting her decide where she felt it would be best in her links.
Tree, I don't think this is in your links but resurfaced lately; would be outstanding addition since it covers IV insurance coverage!
Could you show it as is in the links so folks know exactly what the link is? Thanks my good friend Tree! Bettyg
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
please add as time permits Tree! Hoping you're enjoying all the fall foliage colors everywhere you go...Bettyg Posted by treepatrol (Member # 4117) on :
updated page 5.
Interested in what Trolls are?
Lou B's Troll Link
Posted by treepatrol (Member # 4117) on :
Flouroquinolones, and Quinolones by PQ 1
2
3
4
5
6
7
8
9
Posted by treepatrol (Member # 4117) on :
updated your gona have to seach to see whats new this time! Posted by AP (Member # 8430) on :
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.
Posted by treepatrol (Member # 4117) on :
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 Posted by lymedad (Member # 8074) on :
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
Posted by treepatrol (Member # 4117) on :
up dated
Posted by treepatrol (Member # 4117) on :
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.
Posted by treepatrol (Member # 4117) on :
updated abx's bloodbrain barrier stuff bottom page 2.
Posted by bettyg (Member # 6147) on :
Hope you are FINALLY feeling better and like your OLD/YOUNG self again! Posted by lymedad (Member # 8074) on :
TreePatrol,
I was asked to post the following letter here. If you think it inappropriate, please don't hesitate to delete it, or let me know and I'll delete it.
Betty G thought other newbies might get some benefit from our story.
LymeDad
------------------------------------------------
A couple of weeks ago I read two separate posts from young people suffering from Lyme who were really struggling with convincing their families that their disease was real.
I offered to write a personal letter to their families highlighting what we have gone through as a family for the past 5+ years (my daughter suffers from Lyme and 3 co-infections).
One of the posters to whom I sent the letter has asked that I post it here in the General forum. My only reason for doing so is in the hope that someone else might benefit from our experience and be able to share our story with their family.
I've included the letter below (I deleted all the personal references from the original letter).
-------------------------------------------------
I'm not really sure where to start so I'll just write what I know.
My name is XXXXXX. I am a retired SMSgt (4 years in the Seabees, 21 years USAF), living in southern California. I'm 59 years old, a veteran of two tours in Vietnam and a Christian man with a family that is hurting.
I'm not trying to sell anything and I'm certainly not trying to get involved in anyone's family business.
I just know that my family has been through a nightmare for the past 5+ years and I thought that if I could help anyone else by simply writing a letter, I would certainly try to do so.
I hope that you will take the time to read the following and see if maybe your family is experiencing some of the same things we have.
My daughter, Nicole (28 years old), has Chronic Lyme disease. She suffers every day from pain in most of her joints and muscles.
She also gets migraines so severe that she's unable to get out of bed for days at a time. She's had flu-like symptoms so bad she's been unable to keep much on her stomach for weeks at a time.
She's experienced time where she's been unable to speak clearly and she has problems with her short term memory.
This has been going on since January 2001.
Nicole was and is a very bright, engaging young woman who is now stuck living with her parents.
She has been so ill that she was forced to move back home and that is probably the worse thing about this illness, she's just not capable of taking care of herself.
Her first family doctor diagnosed her with Fibromyalgia Syndrome, Chronic Fatigue/Chronic Pain Syndromes.
The typical treatment for these ``diseases'' was to prescribe pain medications, antidepressants and anti-anxiety medications. Of course this only treated the symptoms, not the cause.
Nicole then began the rounds of being tested by all of the specialists. For a period of more than 4 years she saw so many different doctors we've lost count.
She's been to a rheumatologist, a cardiologist, two neurologists, a psychiatrist, a psychologist and two different family doctors; you name it she's seen one.
She's had at least six MRIs of her brain, two spinal taps, so many x-rays we've lost count.
She's been to the Emergency Room of our local hospital so many times that they know her by her first name.
She's been admitted to the hospital on three separate occasions for more than a week each time.
She's had so much blood drawn that she no longer even cringes when they stick her with a needle.
It wasn't until we were referred to a doctor in northern California that we finally found out what she has.
She and I made the 9 hour drive up the coast to see this doctor. He spent more than 3 hours just talking with us. He then drew blood and had it sent to a laboratory that specializes in testing for Lyme disease.
The results were just what he predicted, she tested positive for Lyme disease and three other co-infections.
All of the bacteria in her body came from a tick bite. In fact we even remember when she was bitten.
In 1996, Nicole and several of her friends went camping in the mountains above Ojai California.
When she returned four days later, she discovered a fully engorged tick in her scalp. We didn't think much about it.
We now know what it has done to her.
Nicole has been taking several courses of oral antibiotics from late 2005 until June of 2006.
In June she had an intravenous tube placed in her arm, called a PICC line. She now infuses antibiotics through the PICC line directly into her blood system.
This IV infusion has made a world of difference.
She no longer needs her wheelchair, she is able to get out of her room for about 6 hours every day and her ability to communicate with us and her doctors has improved tremendously.
We're starting to get our child back.
I wanted to tell you that when she first became ill I thought it was just her imagination. I thought she was just being lazy.
She would call me from work and say she was just too sick to drive home. I'd go to her job and drive her to her apartment.
I wasn't very patient with her. I just didn't understand.
The cause of the pain and other neurological symptoms she goes through doesn't show up on an x-ray or in routine blood tests.
She doesn't look sick from the outside. It was an extremely rough time between her and I the first four years of her illness.
I am probably the world's biggest cynic (must be the military training).
If I couldn't see the problem, I didn't believe it existed.
How could my daughter be so sick and not have it show up on any routine blood test or x-ray.
I assumed she was either faking it or like I said, just lazy.
The real problem with this disease is that there just isn't much known about how it works in the body. In fact many doctors don't even believe it is real.
Most health insurance companies won't even cover the procedures needed to treat this nightmare.
We've had to pay for about two-thirds of her treatments out of our savings.
Let me tell you, it's been a tough ride. I've gone to almost all of her doctor's appointments over the past five years.
I've listened to them tell her nothing is wrong. I've seen the disappointment on her face, especially when she and I have had arguments about her illness.
I've not been the easiest person to get along with, in fact, at times I've been a real jerk.
Her mother and I have watched and listened when she has been so sick she can't get up off the bathroom floor for hours.
We've watched as the paramedics have come into our home to take her to the hospital.
We've watched as she has become so ill she has to have a wheelchair to even get to her doctor's appointments.
I've done all the research I can over the internet and from books.
Lyme disease is real.
I'm not sure where you and your family are with this problem. I just know it's been one of the toughest things I've ever had to face.
Well that's about it. That's our story. I hope I've been able to convey to you and your family how real this thing is.
It wasn't until I saw a difference the antibiotics have made for my daughter that I finally became convinced that she has been suffering beyond anything I could have imagined.
Maybe I just didn't want to admit I couldn't fix it, so it couldn't be real.
I have a lot of things to work out with Nicole when she is well enough. I've hurt her and I have a lot to make up for, but that's going to come.
I'm convinced we will lick this thing.
I only hope that others can read this and understand that someone else has gone through the same things as you are.
You are not alone.
If you'd like more information, one of the best sources I've found is at the LymeNet website.
I've spent many hours reading of other peoples struggles and advances on this site:
tree, i thought this would goo added around the BUT YOU LOOK SO OOD/ NO SLEEPING.
tree, thx; nd hoping youfeeling bettefr.
Posted by bettyg (Member # 6147) on :
hi tree, how are you feeling now? over that crap you got while on vacation in oct?? hope so!
just readthis about someone's bad dr. visit, igenex testing, and this poster's response was very enlightening;
not sure where you can post this, but good stuff here!
radiogirl Frequent Contributor Member # 9202 posted 14-12-2006 06:31 PM
Hi Panic, I wanted to tell you that first your concerns are valid.
But science is leeps and bounds ahead of your ID doc.
What scientists learn now could be 10 to 20 years away from your doctors office.And IM not talking about big pharma scientist.Interests are different there.
If you would like to investigate a microbial basis for your condition you might be surprized to find that infection should be considered suspect number one according to some of the worlds leading scientist.
Start with www.immed.org look at the qualifications of the people associated with that organization.My panel of ID docs couldnt hold a candle to those scientists read the bios of the doctors there.
You can also go to www.roadback.org and chat on the bulletin board and speak with many who treat diseases with abx alot of those diseases people are given no hope in the traditional world and treated with chemo-like drugs and immune suppressing drugs.
On abx they go on to live normal lives.But of course the earlier the better for recovery
I am a former radio show host who had CFS/FM and treated by a panel of doctors because friends of the family were large contributors of the hospital and I was feeling so ill.One member of that family passed away yesterday and Espn has run tribute to him all day .Well deserved I might add.I dont watch alot of football but my husband is from Kansas City and adored said philanthropist who played a huge part putting together NFL.
The point Im trying to make is I thought I had the best care anyone could have and yet I was getting sicker.The more I tried to tell the ID docs to look at infection (I felt sick) I just became an annoyance.Their tests always showed nothing so It was all in my head after that.
Then one day I had Dr.Katherine Poehlmann on my show and a whole world opened up.She led me to many resources that said of course if you feel sick you probably are.She was ill herself.She is no slouch as she was a part of the Rand think tank.And cured her RA with abx not immune suppressing drugs.
Her website is www.RA-Infection-connection.com its about alot more than RA .Many illnesses explored there being of microbial origin.
I went to www.immed.org and my regular GP said what the heck lets try it.You can find treatment considerations on the site.Three days into doxy I sware I wanted to die and I even called Prof.Nicolson and said are you trying to kill me.
He said you are now on the road to regain your health.Keep going and I did.You see the microbes are many and I understand you wonder if its Lyme.
There are many bacteria that can cause all kinds of havoc in the body.But testing is another matter .Its not like House where they scratch their heads and he looks under the microscope and says AH-HA.I tested with Igenex one doc said it was neg one doc said positive.
I also tested positive for C.and m.pneumonia with c.pneumonia out of range .I went ahead with the abx knowing that I might not ever know exactly whats running around in there as Ive been so immune compromised.
Dont ever let a doctor ID or otherwise tell you lyme or any other illness is a fad or unreal.They ARE NOT QUALIFIED to tell you that.
Go ahead and begin your investigation and you will find that there are many doctors who do subscribe to the infectious theory behind disease. Lyme as well as other microbes.
Roadback.org helps autoimmune patients find them and when you read the history and maybe the book recommended there it will help too.Although I am not on the marshall protocol a very serious protocol not to be taken lightly but there are many infectious conferences and access to published material you can look at on that board but I am not promoting that treatmant.(contriversial)www.marshallprotocol.com
Well Ive rattled on abit but if you get a positive Igenex believe it.And give yourself a shot at health if you have felt unwell.ABX will either help or not.But be informed.I wasnt and I paid a price.I hope Ive helped somewhat.
And if anyone comes along and reads this and is a football fan or from the great state of Mo.Im sorry for your loss of the gentle giant who so loved your state and the game of football....Lamar Hunt one fine fine gentleman,RG ------------------------------ Posts: 118 | From: Texas | Registered: May 2006 | IP: Logged
Posted by hshbmom (Member # 9478) on :
The CDC published their case definition of Lyme disease for Public Health Surveillance to provide uniform criteria for reporting cases of Lyme Disease. Part of this definition is listed below.
The CDC's definition of an endemic county is a county with 2 confirmed cases of Lyme disease. TWO!
You may know of at least 2 confirmed cases of LD in your county.
We can get our county declared endemic for Lyme disease. This step will help overcome one familiar obstacle to the diagnosis of Lyme disease...the "We don't have Lyme disease here" syndrome.
A history of "exposure" depends on whether your county is considered endemic.
Also, many of us have photos of our EM rashes...and have been diagnosed with LD on the basis of having this EM by a LLMD.
Once a county is recognized as being endemic for Lyme disease it should be easier to get a correct diagnosis.
Your input is welcome. I need someone to take this idea and put legs on it.
Nancy
"Case Definitions for Infectious Conditions Under Public Health Surveillance
State and local public health officials rely on health-care providers, laboratories, and other public health personnel to report the occurrence of notifiable diseases to state and local health departments. Without such data, trends cannot be accurately monitored, unusual occurrences of diseases might not be detected, and the effectiveness of intervention activities cannot be easily evaluated.
In the United States, requirements for reporting diseases are mandated by state laws or regulations, and the list of reportable diseases in each state differs. In October 1990, in collaboration with the Council of State and Territorial Epidemiologists, CDC published Case Definitions for Public Health Surveillance (MMWR 1990;39{No. RR-13}), which, for the first time, provided uniform criteria for reporting cases.
This report provides updated uniform criteria * for state health department personnel to use when reporting the nationally notifiable infectious diseases listed in Part 1 of this report."
The following is a part of the CDC's definition of Lyme Disease:
"Definition of terms used in the clinical description and case definition:
Erythema migrans. For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing. A single primary lesion must reach greater than or equal to 5 cm in size. Secondary lesions also may occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM. For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.
Exposure. Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required.
Disease endemic to county. A county in which Lyme disease is endemic is one in which at least two confirmed cases have been previously acquired or in which established populations of a known tick vector are infected with B. burgdorferi."
This web page is huge, use "Control" and "F" to search for Lyme. ******************
Betty broke this statement up to make it easier to read. She also posted the statements at the bottom.
Erythema migrans. For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing.
A single primary lesion must reach greater than or equal to 5 cm in size. Secondary lesions also may occur.
Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM.
For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent.
The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure. *********************************
Now for us to take action!
so we call our COUNTY HEALTH DEPT. to get our county declared endemic
Posted by bettyg (Member # 6147) on :
hi my dear friend tree! hope you get to feeling better soon; we have missed your replies to posts! here's to a healthier new year!
Keeping you and your family close in my Heart and Prayers...hope some of this information is helpful.
Much love, now as always, Melanie -------------------- The National Lyme Disease Memorial Park Project [email protected] Posted by MariaA (Member # 9128) on :
The following are links to a few threads in which herbal medicine is discussed for Lyme and yeast- mostly those herbs from Stephen Buhner's protocol from his book Healing Lyme. I've included a few which come from Dr Zhang's protocol, and some candida/yeast probiotics discussions.
Please note: although these herbs can be purchased without a prescription, there can be side effects and you should do this under a doctor's direction. Some posters below indicate they have had serious side effects from some of the herbs. Do not take these herbs without AT LEAST reading Stephen Buhner's book. This thread does NOT give you enough information to self-treat safely!!!
Remember that some of the positive experiences on this forum are the same people posting over and over again. Not everyone has the same experiences with herbal treatment or herbal-and-antibiotic treatment. Some of the posters who report positive experiences are doing many other forms of treatment besides Buhner herbs alone.
The Buhner book contains a 30-page bibliography of studies which support his conclusions, and those references are a good start for more information that may help you evaluate whether to try this treatment.
Our testimonials on the Internet are not a substitute for a decent LLMD's advice and guidance. ********************
Stephen Buhner's book Healing Lyme: http://tinyurl.com/y4wgbk (amazon.com link, includes good reviews)
thread about a 34-page paper by Dr. Dietrich Klinghardt, MD PhD (Seattle), who incorporates Buhner's protocol (along with detoxification, treatment of coinfections and parasites, various naturapathic methods, salt/C, and many other treatment methods) http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050656
Updated 1-12-07
Posted by bettyg (Member # 6147) on :
if anyone else prints out TREEPATROL'S NEWBIE LINKS after he updated, you might want to hold off today for a bit.
i found 4-5 links he posted in computer questions that i think he meant to add to his ORIGINAL NEWBIE LINKS HERE. so this way when you print this off, you'll get ALL OF HIS LATEST WORK! Posted by trueblue (Member # 7348) on :
Tree! Good to see you!
How are things?
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by bettyg: if anyone else prints out TREEPATROL'S NEWBIE LINKS after he updated, you might want to hold off today for a bit.
i found 4-5 links he posted in computer questions that i think he meant to add to his ORIGINAL NEWBIE LINKS HERE. so this way when you print this off, you'll get ALL OF HIS LATEST WORK!
{BettySaid} i found 4-5 links he posted in computer questions that i think he meant to add to his ORIGINAL NEWBIE LINKS HERE.
I said, They are in NewbieLinks Betty I post them in computer questions more room there then I link to them in Newbie Links.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by trueblue: Tree! Good to see you!
How are things?
Thanks true things are bad right now in my life. Thanks for asking.
Posted by treepatrol (Member # 4117) on :
UPDATED BABESIOSIS
Posted by treepatrol (Member # 4117) on :
Ehrlichia, family Rickettsiaceae Order of Rickettsiales 07
can you add this advise from NANNIE about fighting denials of health insurance approvals for testing, etc? outstanding advise. thanks my friend! Posted by bettyg (Member # 6147) on :
tree, this is OPTIMISTICK'S ADVISE ON COLLEGE ASSISTANCE; outstanding advise!! Posted by treepatrol (Member # 4117) on :
{Ann - OH} Insurance commissions for every state
OptiMisTicK Advice College aid
nannies advice Insurance Company made me cry UPDATED Posted by treepatrol (Member # 4117) on :
Updated:Page 2.
New Test for Lyme Disease CENTRAL FLORIDA RESEARCH
Western Blot Info
Band 41kd Most important? More on 41K FDA It is important that clinicians understand the limitations of these tests ILADS W Blot Explaining Borreliosis (Lyme) Western Blot Tests Explanation of Western Blot Bands Igenex Labs on the Western Blot Melissa Kaplan's Lyme Website Explains Western Blot Dr. C Explains Western Blot Western Blot
Posted by bettyg (Member # 6147) on :
TREE, please add; thanks!
donating $$ to charities, like LDA & LYME RESEARCH CENTER; legal wordage needed.
also, lyme research center $$ can be sent to LDA headquarters EARMARKED FOR LYME CENTER!!
Posted by treepatrol (Member # 4117) on :
Updated this section
Deer Meat CWD Link A & B Below A Link B Link Video CWD Genetics Animations Biochemistry Animations Immunology Animations Physiology Animations Microbiology Animations Max Animations
tree, would you add my newbie links/advise LINK to yours since i'll be off internet 7-10?? days for my hip surgery; thanks tree! bettyg Posted by treepatrol (Member # 4117) on :
Started new page page 6. also put betty's help links in on 3-26-2007
Posted by treepatrol (Member # 4117) on :
updated this area
Herbs Peppermint Original CheapHelp PDF Large6.98MB Ken Lassesen Cheap Help
Posted by bettyg (Member # 6147) on :
hi my friend, tree! what did you add this time? very handy to show the highlites here! Posted by treepatrol (Member # 4117) on :
quote:Originally posted by bettyg: hi my friend, tree! what did you add this time? very handy to show the highlites here!
fixed some links added one or to hunting is fun
>Nose Bleeds < BLOOD SUPPLY
hunt the other one Posted by treepatrol (Member # 4117) on :
Much appreciate the work you have done on this vast amount of valuable information.
Terry
Posted by treepatrol (Member # 4117) on :
updated
Guidelines for Infectious Diseases Specialists Serving as Expert Witnesses IDS Guidelines they should read them! top of newbie links
this is in tick section Respiration in Ticks
Plastron respiration in ticks Posted by bettyg (Member # 6147) on :
WOW TREE, you've been editing your whole format here with all your links, etc. FANTASTIC JOB organizing this WEALTH OF GOOD INFO!
well done my friend; what a labor of love you have given to your project sharing it with ALL OF US LYMENETTERS! Posted by bettyg (Member # 6147) on :
for your site IF you already don't have....
from JAKKI, new member:
Here is the link, it pretty much covers just about every type of vasculitis, however there are no boards associted with it, it's just an information site. Hope it is helpful!
Jarisch-Herxheimer reaction spirochete:Google Scholar What Is a Herxheimer Reaction? What Is Herxing? The Herxheimer Reaction The Herx Reaction Herxheimer Reaction Explained Endotoxins -- Is This What Causes Herxes???(Long) Posted by : seibertneurolyme What is happening when you stop herxing on abx
Posted by treepatrol (Member # 4117) on :
i added it to mine also.. BG Posted by treepatrol (Member # 4117) on :
Updated page two 2.
Aristo Vojdani
WesternBlot and Elisa tests explaining differences between tests developements and this guy uses both antigens from cultured Bb and Cultured from mammal blood give it a listen Here Pick this one bottom page:NeuroScience Inc. (2..> 28-Jan-2008 12:19 2.5M
Drawbacks of Serodiagnosis of LD In vivo-induced antigen technology: the most sensitive method of detection for Lyme disease and other tick-borne diseases, Part One of a two-part article
The use of lymphocyte proliferation assay and cytokine production in seronegative patients with Lyme arthritis or neuroborreliosis
Western Blot Info
Betty G I am working on integrating your info but its given me a headache Ill get it eventially.
[ 07. February 2008, 09:28 AM: Message edited by: treepatrol ]
Posted by bettyg (Member # 6147) on :
hi tree, just saw your note to me; i understand and of those headaches....uffda!
take care tree!
here's a new article on neurophysciatric disorder from 12.07
"Spirochetes are the other major type of bacteria that we look for under the microscope. These are corkscrew type, snake-like bacteria. Although there are different types of spirochetes, the one in the mouth is called Treponema Denticola. As an aside, the spirochete called Treponema Pallidum cause syphilis and another type of spirochete called Borellia Burgdorferei causes Lyme disease. All three types of spirochetes are bad guys. But in terms of periodontal microscopic assessment we are concerned when we find the spirochete Treponema Denticola, which has been shown to be associated with periodontal disease."
=============
There is more info at the link above than what is posted here.
Band 41 might show up in the absence of Lyme IF you have a gum disease as stated above.
However, if you're having other Lyme symptoms, it would be reasonable to check that out thorougly.
Posted by NMN (Member # 11007) on :
Great lyme essay on effects of lyme on the brain along with other great info:
BettyG thought I should add this. I dearly hope it helps people.
They claim if your insurance company denies coverage for medicine, as long as the other qualifications are met, they will supply meds for $7.00 for each med, per month.
Information provided by: Colleen Nicholson Research Assistant to Dr. Burrascano, MD Founder, Military Lyme Support
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by NMN: Great lyme essay on effects of lyme on the brain along with other great info:
ps I have been having trouble updating links I sent a letter to Lou so he could talk to his compter wizz.
Posted by hshbmom (Member # 9478) on :
Please consider adding where to take a biopsy for those with EM rashes....
If you're sending the biopsy to Igenex Labs in California....
Collect several 3-4 mm punch biopsies from the inner edge of the expanding part of the rash...the inner edge of the outer part of the expanding rash.
Put the biopsies in a dry, unused sterile urine specimen cup. Do not put the biopsies in formalin or alcohol.
Ship the biopsy by overnight express to Igenex Lab in California on a Monday through Wednesday. Do not ship on a Thursday or Friday or your specimen may get ruined over the weekend.
I wasted $300.00 on a PCR biopsy because my helpful, but uninformed physician took the biopsies from the center of the rash where the tick had been attached, not at the active (expanding) part of the rash.
Also, please remind others to take sequential photos of their rash(es) with a ruler in the photo and the date written on their skin...include a photo so you can see the rash and the person's face, if it's possible.
Taking photos got me classified as a "Suspect" case by the state health department. I was told confirmed and suspect cases are the only ones included in the state's Lyme case counts.
I was told I'd be added to the Lyme case count that year, but someone failed to amend the case count and I was excluded from the official statistics.
The health department was too bothered to amend the Lyme case count after they waited 6 moths to contact me and verify my positive Lyme Western Blot test.
Posted by bettyg (Member # 6147) on :
hi tree,
please consider adding this info on DRY MOUTH by i broke up today...
Xerostomia information for dentists .... *************************************
Helping patients with dry mouth 7.08
By Cathy L. Bartels, Pharm.D., assistant professor, pharmacy practice, School of Pharmacy and Allied Health Sciences, University of Montana
This is a four page pdf file. You should print out a copy for future reference.
Posted by bettyg (Member # 6147) on :
hi tree,
fyi, lou b deleted my bettyg's newbie links today since i maxed out the system where i could NOT edit/update anything!
i'd edit all places, and then when downloading; it would not complete loading ... some UBB problem of some sort.
lou tried too without success.
if/when i bring it back ... it will have to be divided up into medical vs. support for ssdi info, etc.
unsure if i want to continue tackling this or not! i'm burnt out; you know how it is.
i know you can't update your huge file either.
just thought i'd let YOU know what happened to it.
seemed so strange to have to remove my link from my signature line referring folks there as well as my welcome letter to newbies who post!
hope you are doing as well as possible; how are you coming on your weight loss? Posted by emla999/Lyme (Member # 12606) on :
MOLD TOXICITY, MYCOTOXINS and FUNGALBIONICS
Several years ago three doctors from the World Health Organization (WHO) Collaborating Center For Mycotoxins in Food wrote a book about the negative effects that toxic mold/fungi have on the body. This book was called FungalBionics.
In this book the authors describe how the exposure to toxic fungi/molds and mold mycotoxins either directly cause or contribute to many of the major health problems and diseases of today.
Dr. Constantini spent much of his life studying the effects that toxic mold/fungi mycotoxins had on human health. And much of his life's work and findings can be found in the FungalBionics book series.
Posted by Tracy9 (Member # 7521) on :
KNOW YOUR MOLD & LYME RISKS THREAD: The symptoms of lyme and mold sickness are basically the same. There could be people on this board, especially those with only clinical diagnosis of lyme disease, who may actually have undiagnosed mold sickness!
Please take the time to read this entire thread and become aware of your possible risks. It is a long thread but information packed with critical information on symptoms, testing your body and testing your home living environment as well as work environment.
When mold is a factor it has to be treated first, before lyme. Mold illness will de-regulate and undermine your immune system. In other words you can spend thousands on lyme treatment and not get as effective results if one of the underlying contributing problems is mold sickness!
I have read numerous lyme articles that state that some people are misdiagnosed with lupus but really have lyme disease. The symptoms cannot be distinguished.
It may not be that simple in all cases, but it can be that many cases of lupus will respond to antibiotics for a variety of reasons, including lyme and other infections as part of the problem.
Take a look at this article. It mentions lupus throughout.
At any rate, if I were to be given the diagnosis of lupus which has no cure, I would want a lyme disease test and would want to try antibiotic protocols to see if I could get rid of my lupus.
Look also at The Road Back Foundation website which talks about successful treatment of lupus with antibiotics:
Cerebral malaria is a rapidly developing encephalopathy, but much pathology of is not clearly understood. Malaria occurs in millions of people, but only 20-50 % of the cases develop into cerebral malaria. It is unclear why some people develop it and others do not.
Cerebral malaria develops when parasitized red blood cells (PRBCs) adhere to the cerebral microvasculature, causing blockage of the blood's pathway (see photos 6-8). This blockage stops blood flow, leading to a shortage of oxygen and nutrients those areas of the brain. The occlusion of the small vessels occurs diffusely throughout brain. This phenomenon seems to occur in all patients with cerebral malaria, although there are numerous other complications that occur as a result of this disease.
Approximately half of the patients with cerebral malaria have elevated intercranial pressure and seizures. Patients in the Gambia, in West Africa, had rings of PRBCs form around the normal RBCs, which will also lead to microvasculature occlusion.
On rare occations, the parasite causes cerebellar ataxia, but no loss of consciousness. The ataxia can occur up to 4 weeks after a malaria attack occurs, but will disappear after 1-2 weeks.
Physical manifestations of the disease may be an abnormal EEG resulting from the lack of oxygen, loss of sulci, and a MRI may show hemorrhagic lesions and infarction.
A common cause of death for patients with cerebral malaria is acute respitory arrest, which may be a result of the intracranial pressure causing a fatal brain stem herniation.
Most people who survive cerebral malaria have no residual neurologic problems. Only about 10 % of patients surviving cerebral malaria suffer from neurologic deficits such as hemiparesis, hypotonia, or spasticity.
We know we have an unclear understanding of the disease because so many people survive the disease without any neurologic problems. This fact leads us to believe it is unlikely that there is complete obstruction of blood flow.
One hypothesis is that the parasite indirectly causes an abnormally high release of nitric oxide in the brain, which changes brain function in the same way as ethanol. This would result in a unconscious state. However, this state would be reversible without residual neurologic probelms.
This hypothesis explains the reversability of the coma state, however, it does not explain many of the other problems associated with the disease, such as the blocked microvasculature.
look at the 3 photos there folks ... interesting. betty
Posted by Cass A (Member # 11134) on :
Dear Friends,
Here's a link to a very important article about Cipro, Levaquin, Avelox, and Floxin.
There is also a 6-part video.
Apparently, these drugs all contain FLUORIDE, which is a known neurotoxin that can get into the brain, etc.
OBJECTIVE: To describe the clinical features of cardiac manifestations of Lyme disease, the most common vector-borne illness in North America, which occasionally results in cardiac involvement.
DATA SOURCES: A review of the English-language clinical literature pertaining to Lyme disease and Lyme carditis indexed in MEDLINE from 1975 to 1995.
DATA EXTRACTION: Studies describing diagnosis, clinical features, treatment or outcome were reviewed.
DATA SYNTHESIS: Cardiac complications of Lyme disease may occur in up to 8% of patients.
Cardiac manifestations occur in the early phase of the illness, at a median of 21 days from the onset of erythema migrans.
Temporary cardiac pacing may be required in up to a third of cases and complete recovery occurs in most (greater than 90%) patients.
The overall prognosis of Lyme carditis is very good, although recovery may be delayed and late complications such as dilated cardiomyopathy may occur.
CONCLUSION: Lyme disease is a tick-borne spirochetal infection caused by Borrelia burgdorferi.
Cardiac complications of Lyme disease generally occur in the early phase and include conduction system disturbances, myopericarditis and congestive heart failure.
PMID: 8640597 [PubMed - indexed for MEDLINE] no copyright shown....
Posted by nenet (Member # 13174) on :
Art Doherty's list of Lyme Disease symptoms & misdiagnoses
Main site with links to many resources (some of the links might be dead, but some are still good):
To get to the list of possible misdiagnoses and symptoms (that could in fact be Lyme), here is the link via the "Way Back Machine," courtesy of www.archive.org -
The only catch is that if you want to follow any of the links that go off of Art's site (like to Medline, etc.), you need to peel the url back to the original link.
So, say you want to learn about the Lyme Disease symptom, Anxiety.
1. You click on the Symptoms List page, then click "Anxiety",
2. then click "MEDLINE - Anxiety Disorders or anxiety AND Lyme disease - 18 on 21 Sep 99"
3. You get an error page. Go to the url box at the top of your browser window, and delete everything that comes BEFORE the http://www.ncbi.nlm.nih.gov part of the address. (You basically want to go to the live version of the site link, if that makes sense.)
4. hit return, and if the link is still valid, it should take you to the correct webpage.
I hope that made sense, and helps anyone that was looking for this old website that was helpful to so many before it stopped being updated.
Posted by bettyg (Member # 6147) on :
dilly's post 9-10-09 about her son/school ...
on IEP !!
how to explain son's cognitive problems :medical vs. behavioral
MUST READ for every parent going thru here; details galore from around 12-15 parents!!
compiled experiences .... bettyg
Posted by WildCondor (Member # 434) on :
Just curious as to why sticky's have replies in them. Its so confusing!
Posted by bettyg (Member # 6147) on :
condor, tree's post is NOT CLOSED; that's why we can reply and add more info even though he himself can't add it to his "links"; he maxed it out as i did mine.
Medicare and IV ABX Policies read MY3BOYS comments, 9-28-09
SCHOOL TESTED OUR SON (parents with Lyme kids in school - please read)
by dilly 10-8-09; valuable info from all posters there!!
Posted by bettyg (Member # 6147) on :
NEED HELP PAYING FOR MEDICINE?
this applies to ALL medicines for whatever disease!!
i just got home from visiting with LEAVE IT TO BEAVER, LARRY MATHEWS, representing DIABETES patients, on the
PARTNERSHIP FOR PRESCRIPTION ASSISTANCE bus traveling nationally all over here in town today for 2 hrs. only, 10-12-09!!
they gave me the following info and i'm just going to type it up so it goes here and other places:
SERVICE TO AMERICA
since the alunch of PPA in april 05, more than 5.7 million americans have found programs that can help them pay for their medicines. thousands more find help every single day.
if you do NOT have prescription coverage and can NOT afford your medicines, call
more than 2400 brand-name and generic medicines are covered. you could get them FREE OR NOREARLY FREE!
EXPRESS SERVICE
here's how you find out if you qualify:
1. know the NAMES and dosages of the medicines you take.
2. call toll free 1.888.477.2669
3. a trained specialst will answer your questions and help you apply.
fyi: there are 10 questions asked. i'm copying this OTHER info since it is apparently DIFFERENT FOR ALL 50 STATES!!
Medicaid/Children's Health Insurance Program (CHIP)
There are currently millions of uninsured and financially-struggling patients in America eligible for help through Medicaid and the Children's Health Insurance Program (CHIP) who have not yet enrolled.
Significant health care gaps exist in the U.S. today because low-income patients do not have access to the healthcare coverage they need to better fight disease.
The Partnership for Prescription Assistance is raising awareness of these programs to help ensure that patients get access to the coverage they need to live longer, healthier and more productive lives.
Pick Your State Get an Application ApplyInstructions
To find out if you qualify for help, select the state on the map where you live.
The state programs will be shown with a short summary below the map.
To find out more details about that program click on the program name.
The program details will open a new window where you can see the program information including how to apply for the program.
In most states, you can complete a short application and send it through the mail. Applications should NOT be sent to PPA. ***************************************
plus this info from
ADW AMERICAN DIABETES WHOLESALE ************************************
Treepatrol or someone needs to organize these links then have the moderators delete all replies. They need updating and organization. I hope someone is making this their project.
Posted by WildCondor (Member # 434) on :
Is anyone doing ANYTHING to organize this mess besides me? Does anyone care about this project? Moderators why not start organizing all these links, and clean up the stickies...???? IS anyone working on it?
Posted by treepatrol (Member # 4117) on :
![[Smile]](smile.gif)
![[Eek!]](eek.gif)
![[Cool]](cool.gif)
![[Wink]](wink.gif)
![[bonk]](graemlins/bonk.gif)
![[Big Grin]](biggrin.gif)
![[bow]](graemlins/bow.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[woohoo]](graemlins/woohoo.gif)
![[hi]](graemlins/hi.gif)
![[lol]](graemlins/lol.gif)
![[dizzy]](graemlins/dizzy.gif)