Archive for the ‘Treatment’ Category

IDSA Founder Used Potent IV Antibiotics for Chronic Lyme

Dr. Burton Waisbren Sr. of Milwaukee, Wisconsin is no longer with us but he would be speaking out about the CDC’s recent paper in the MMWR of five case reports of people who developed complications with IV antibiotics for Lyme disease. https://www.ncbi.nlm.nih.gov/pubmed/28617768https://www.ncbi.nlm.nih.gov/pubmed/28617768

A founding member of the IDSA, Waisbren disagreed with their stance that Lyme is hard to get and easy to treat, is not persistent, and that IV antibiotics are too dangerous to use as a treatment option.

In his book, Treatment of Chronic Lyme Disease, he discusses 51 difficult cases, nearly all Chronic Lyme disease sufferers that had been misdiagnosed with everything from ALS to mental disorders. They had all been neglected by main stream medicine that was following the CDC/IDSA stringent guidelines of essentially 21 days of doxycycline.

Interestingly, Waisbren stated, “Back in the 1950’s, when many of these drugs were first coming out, infectious disease doctors studied and used them widely,” he says. “We would put children with rheumatic fever on penicillin for twenty years or more to prevent strep throat and it (the penicillin) did not hurt them,” he says. https://www.uppitywis.org/blogarticle/making-difference-milwaukee-doctor-chronicles-silent-epidemic

In regard to IV antibiotic treatment for Lyme disease and other tick born illnesses, Waisbren used it often – and heavy doses at that.  In fact, in essay 10 of his book he gives two protocols to be considered for the treatment of chronic LD that includes 6-8 grams of IV ceftriazone for at least 6 weeks and longer if the syndrome has entrenched itself for over a year or if the response is coming along slowly. In tandem with the IV antibiotics he typically also used doxycycline, an erythromycin, Diflucan, Flagyl, Valtrex, and gamma globulin. When there was not a satisfactory clinical response he would treat Babesia with Mepron and/or other antimalarials. For evidence of intransigent bartonellosis (Bell’s palsy of the face and gut, and chronic dermatitis) he would add rifampin and sometimes intravenous genamicin.

That’s a far cry more than the CDC/IDSA mono treatment mandate of doxycycline.

There were no IV complications mentioned at all in his book from the myriad of patients he treated.

Here’s another case:  https://madisonarealymesupportgroup.com/2017/06/26/important-example-of-iv-antibiotics-for-lymemsids/   Initially diagnosed with dementia, “Once home, McGhee, who had begun receiving two weeks of IV antibiotics, seemed to be getting better. His confusion began to clear, his short-term memory improved and his tremors abated. ‘I could feel myself recovering,’ he recalled.”  This link also shows that Lyme/MSIDS can often present as dementia, ALS, Lupus, MS, and numerous other autoimmune diseases.  

About testing he states that the Western Blot appears to be the most positive finding in clinical LD, but…“setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect.  The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”  

Waisbren gives a stern warning that the public should insist that any new Lyme vaccine be devoid of peptides that mimic those present in humans as this is a potential problem as researchers do not know whether the vaccine can cause molecular mimicry which in turn can cause autoimmunity and circulation with myelin T-cells.  For more:  https://madisonarealymesupportgroup.com/2017/01/26/lyme-vaccine-to-be-tested-on-humans/

Waisbren states in his foreword, “I have to come to the conclusion that there is an epidemic of chronic Lyme disease occurring in the United States that warrants more attention than it is getting from the government and the academic medical establishment. It is hard for me to believe that 51 cases of what I call the chronic Lyme disease syndrome represent a figment of my imagination….I suggest that those who doubt that the Lyme disease syndrome exists and that it can be treated turn to the over 200 peer-reviewed references included in summary articles written by two giants in the Lyme disease field: Dr. B.A. Fallon and Dr. Steven Phillips.”

If Waisbren thought chronic Lyme disease was an epidemic in 2011, what would he think now?

For more rebuttals to the MMWR article:

https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

https://madisonarealymesupportgroup.com/2017/06/19/stricker-johnson-rebuttal-to-article-in-mmwr/

https://madisonarealymesupportgroup.com/2017/06/21/ilads-rebuttal-to-mmwr-article/

https://madisonarealymesupportgroup.com/2017/07/01/dr-maloney-comments-on-mmwr-article/

https://madisonarealymesupportgroup.com/2017/06/26/lorraine-johnson-interview-on-cdc-mmwr-article/

https://madisonarealymesupportgroup.com/2017/07/01/dr-shor-on-mmwr-article/

https://madisonarealymesupportgroup.com/2017/06/19/lees-rebuttal-to-cdc-article-in-mmwr/

CDC Advises Multiple Lyme Tests Due to False-negative Results

http://wtnh.com/2017/06/30/officials-this-summer-expected-to-be-worst-tick-season-ever/

News8 wtnh.com June, 2017

The CDC states one Lyme test may not be enough and to be cautious with false-negative results from Lyme disease tests after getting a tick bite.  The test in the early stages only tests positive from 29-40% of the time.  

“Lyme disease testing can be negative in the first month following infection and this is because we’re really waiting for the human immune response to mount in response to the infection,” said Claudia Molins, a CDC Microbiologist.

 

**Doctors who suspect Lyme/MSIDS should should make a clinical diagnosis due to the inaccuracy of testing.  Empiric treatment is also  warranted:  https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/

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According to one of the most experienced Wisconsin LLMD’s, some folks never mount enough of an immune response to meet the stringent and arbitrary CDC two-tiered testing.  Often these are the sickest of patients.

The elephant in the room hasn’t budged in over 40 years.

 

Dr. Shor on MMWR Article

https://www.ncbi.nlm.nih.gov/pubmed/28617768#cm28617768_69799

Marzec, et al (1) described 5 cases of treated chronic Lyme disease that resulted in poor outcomes. We are concerned about 3 conclusions:

1. Characterization of chronic Lyme disease as an invalid nebulous condition

2 “…..evidence that the recommended two-tiered serologic testing is actually more sensitive the longer B. burgeorferi infection has been present”

3. “Studies have not shown that such treatments lead to substantial long-term improvements for patients.”

  1. We too are concerned about any individual whose outcomes represent complications to well-intentioned intervention. However, there is substantive support in the literature for the existence of 1. Chronic Lyme disease-Our perspective is that this represents the clinical manifestations of ongoing active infection by Borrelia burgdorferi (Bb) sensu latu complex in the setting of either chronic untreated or inadequately treated individuals. The likelihood of undiagnosed acute Lyme is increased by the infrequency of patients recalling tick bites. In one study representing CDC criteria diagnosed Lyme disease, only 14% had that recollection. (2) Not all cases of acute Lyme are associated with an erythema (EM) rash. Over 15 years, 31% of the reported surveillance cases lacked an EM rash. (3) The ILADS guidelines (4) describe the Lyme post treatment “….persistence of B. burgdorferi in specific individuals and animal models..” The 2012 Embers (5) nonhuman primate and 2014 Hodzic (6) murine studies provide evidence of persistence of Bb infection after MBC adequate courses of antimicrobials. Additional animal and human studies support this concept (references upon request). We want to emphasize that other etiologies may be causal, but that a cohort of these patients likely have a perpetuation of chronic signs and symptoms due to an active Bb infection.
  2. Sensitivity of two tiered testing in late Lyme: Based upon a 2008 study by Steere et al (7) “the sensitivity of 2-tier testing in patients with later manifestations of Lyme disease was 100%, and the specificity was 99%” Entrance criteria for late stage Lyme: “In all patients with neurologic, cardiac, or joint involvement, a serologic result positive for B. burgdorferi by ELISA and Western blot was required for case inclusion….” “Because the entrance criteria for the aforementioned analysis REQUIRED positive serologies … by definition, all patients with disseminated or persistent Lyme disease were required to have a positive serologic test result. It is disingenuous to define a condition by a positive test result and then state that the test has 100% sensitivity…” (8) By extension, the concept of seronegativity is well-documented in cases of chronic Lyme disease. (references upon request)
  3. “Studies have not shown that such treatments lead to substantial long-term improvements for patients.” A number of studies discount this claim. In 2 of the 4 NIH supported prospective human trials by Fallon (9) and Krupp (10), sub-cohort analysis showed statistically significant benefit to retreatment. In the former study 37 patients who were suspected of having active neuroborreliosis, and were treated with 10 weeks of 2gms/day IV Ceftriaxone. Pain and physical functioning improved at 12 and was sustained at 24 weeks. The authors indicated that “these benefits were felt to be independent of carefully assessed placebo effects.” In the latter study 55 patients who were felt to have active infection by Bb, with persistent severe fatigue of 6 or more months received 28 days of IV Ceftriaxone. A significant improvement in fatigue was sustained at 6 months. Other prospective trials of prolonged antimicrobial treatment were employed that revealed statistically significant improved outcomes. (11-13)

In summary, as unfortunate are the 5 cases reported by Marzec, it is this author’s belief that they should not be used to discount a real entity, chronic Lyme disease. Whether due to the lack of timely diagnosis or adequacy of intervention, the literature supports the concept of chronic active Bb infection. That the diagnostic sensitivity of the 2 tiered paradigm is flawed, and seronegative active Bb infection exists. That emphasis should be made to generate a careful differential diagnosis, proactive management with probiotics and careful monitoring in the selective utility of long term antibiotics. As such, these often disabled individuals will more readily have access to the care they deserve, with compassion and empathetic oversight.

Samuel Shor, MD, FACP President ILADS [International Lyme and Associated Diseases Society] Associate Clinical Professor George Washington University Health Care Sciences 1. Marzec NS, 2017 2. Berger BW, 1989 3. Bacon RM, 2008 4. Cameron DJ, 2014 5. Embers ME, 2012 6. Hodzic E, 2014 7. Steere AC, 2008 8. Stricker RB, 2008 9. Fallon BA, 2008 10. Krupp LB, 2003 11. Cameron D, 2008 12. Wahlberg P, 1994 13. Oksi J, 1998
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Dr. Maloney Comments on MMWR Article

   June 16, 2017 Approx. 7 Min.

Partnership for Tick-Borne Diseases Education

Dr. Betty Maloney comments on the recent CDC paper  https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm?s_cid=mm6623a3_e that uses 5 anecdotal cases to announce IV treatments for Lyme/MSIDS patients are too dangerous.

“Patients and their physicians are not the problem.  Poor diagnostic tests and the pathogen itself, are.”  

“Hopefully, one day, we will see constructive CDC papers on topics that can truly reduce the numbers of patients burdened with chronic Lyme disease.”  

Dr. Betty Maloney

www.PartnershipforTick-borneDiseasesEducation.org

 

 

Letter to Patients Having a Hard Time Getting Treatment After a Tick Bite

Tick bite care, references for Urgent Care and PCPs.

ILADS Member Jane Marke, MD has the following message. To contact her directly, write to contact@ilads.org and your message will be forwarded on to her.

I’m getting lots of calls from friends and family all over the country who are having trouble getting treated for tick bites. If you have having a similar experience, you, too, might want to have something handy to send them about what to expect, and how to enlist the health providers they see in giving appropriate treatment. To that ends I’ve gathered what I think is helpful for people to bring to Urgent Care or their PCP with them if they find these providers resistant to treating them.

Thanks to MMI, Lucy Barnes and PubMed for content.

________________________________________________________________________________________

Basic email:

Dear________,

Here’s what I think is most important to know about tick bite treatment:

Tick Bite Care
What to do if you get a tick bite? There are some myths, but there’s good science busting them.

1.  Tick attachment time is irrelevant. If a tick is sick enough, Lyme bugs are in their saliva, and they transmit the disease immediately. If the tick is less infected, they have to send bugs from their stomach to mouth, and that takes longer. But do you really want to count on how sick the tick is? Don’t let anybody tell you that because the tick wasn’t attached for 24-36 hours you’re ok.

2.  One double-dose of doxycycline is not sufficient. The guidelines that are on the government guideline website, www.guidelines.gov advise 21 days. (That’s a federal government Institute of Medicine website and it’s high quality). No other Lyme guidelines exist. (CDC is not in charge of guidelines; the Institute of Medicine is.) The problem with the study of one single-dose of doxy is that it looked for the bull’s eye rash; it did not look to see if people got sick later. It reduced the rash incidence by 87%. That’s something; but not enough, and it tells us nothing about whether those without rash got sick later. There is no reason to not follow the government guidelines and to risk your health or that of your child because somebody only wants to give you one “double dose” of doxy. There are mice studies of this treatment, and they look abysmal.

3.  If you missed the tick bite and have the bull’s eye rash you are lucky inasmuch as you have incontrovertible evidence of being infected with Lyme. You HAVE Lyme. You can still get “early Lyme” treatment, but it’s not the same as treatment for a tick bite. You can find recommendations for treatment on the http://www.guidelines.gov website. Here’s a direct link to the Lyme Guidelines: http://bit.ly/2tqnaGU. These are government endorsed guidelines, the best we have at this point in time.

4.  Tick-testing is controversial. Don’t wait for the testing to get treated. Negative tick tests give you no useful information; we have no idea how reliable tick testing is vs human testing. But if a tick is positive for a co-infection, something other than Lyme, you might consider getting prophylactic treatment. That’s your call, made with your doctor, but it’s a real consideration. So if you send the tick for testing, make sure the lab tests for co-infections, as well as several species of Lyme.

Jane Marke, MD, ILADS member
New York, NY

**Comment**

If you find a doctor willing to become educated on TBI’s (tick borne illness) please give them this link:  https://madisonarealymesupportgroup.com/2017/06/20/help-doctors-get-educated-on-lyme-and-tick-borne-illness/

Please read:  https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/

Even the CDC is stating to treat empirically (this is new as of July, 2017): https://madisonarealymesupportgroup.com/2017/07/01/good-morning-america-cdc-advises-multiple-lyme-tests-due-to-false-negative-results/  CDC spokesperson at end of video.

https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/ If ticks are co-infected, patients can be too.

https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  Ticks transmit a whole lot more than Lyme.

https://madisonarealymesupportgroup.com/2016/03/20/why-we-cant-get-better/