Archive for the ‘Testing’ Category

Start Treatment if TBI’s are Suspected

http://www.mdedge.com/ccjm/article/141387/dermatology/tickborne-diseases-other-lyme-united-states  Cleveland Clinic Journal of Medicine. 2017 July;84(7):555-567

KEY POINTS

  • Tickborne illnesses should be considered in patients with known or potential tick exposure presenting with fever or vague constitutional symptoms in tick-endemic regions.
  • Given that tick-bite history is commonly unknown, absence of a known tick bite does not exclude the diagnosis of a tick-borne illness.
  • Starting empiric treatment is usually warranted before the diagnosis of tickborne illness is confirmed.
  • Tick avoidance is the most effective measure for preventing tickborne infections.

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The article delineates symptoms, transmission, reservoirs, testing, and treatment of the following TBI’s:  Rocky Mountain Spotted Fever, Rickettsiosis, Ehrlichioses, Babesiosis, Tickborne relapsing fever, Borrelia miyamotoi, Southern Tick-associated Rash illness, Tularemia, and Tickborne viral infections.

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I need to address the following statements at the end of the article:

“Knowledge of the geographic locations of potential exposure is paramount to determining which tickborne infections to consider, and the absence of a tick bite history should not exclude the diagnosis in the correct clinical presentation.

Clinicians need to tread carefully here.  Many patients have been denied testing and treatment due to a map.  These maps should be viewed with the same suspicion as the testing.  

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Until you tell the fox, squirrel, bird, deer, lizards, and hundreds of other reservoirs to stay put, ticks will be traveling everywhere along with the pathogens they carry.  Since Lyme Disease (borrelia) has been found in every continent except for Antarctia (it will be found there too), you can assume that means ticks are there too.  

I’m glad the authors stated this:

In addition, it is important to recognize the limitations of diagnostic testing for many tickborne infections; empiric treatment is most often warranted before confirming the diagnosis.”132_fail316x316

For those of us in this war, this “empiric treatment” by mainstream medicine is new.  Patient after patient has had to wait for test results before doctors will treat them.  Often, since the testing is so poor, it comes back negative and the patient is sent packing, even if the patient has every symptom in the book.  The next step is for authorities to admit and acknowledge that diagnosis of Tick borne infections is a clinical one.  This means doctors need to learn a whole lot more.  For docs willing to learn, please see:  https://www.lymecme.info

Even the CDC admits the tests suck: 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.

Another very important point needs to be made.  The CDC has pushed this one pathogen for one tick mantra for too long.  Many patients are co-infected making cases infinitely more complex and challenging to treat.  Lyme literate doctors trained by ILADS understand this and treat accordingly.  Until mainstream medicine realizes and admits people can have numerous pathogens, and treat for them, people will not get better.  This is why all the doxycycline in the world will not help some patients.

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One last point is that mycoplasma, Bartonella, and other pathogens are not included here but are quite common in patients.  Many of these pathogens are persistent and are adept at surviving.  More research needs to be done on these co-infections.

Please see:

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

https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/

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

 

 

Category:

Anaplasmosis, Babesia, Rickettsia, Testing, Ticks, Transmission, Treatment, Tularemia, Viruses

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.

 

Category:

Activism, Lyme, Testing, Treatment

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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Category:

Activism, Lyme, research, Testing, Treatment

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.

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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/

 

Category:

Activism, Lyme, Testing, Ticks, Treatment, Uncategorized

British Lord Says CDC/IDSA Lyme Guidelines Not Fit For Purpose

Lord Astor of Hever: British House of Lords speech – UK 29-06-2017

https://www.lymedisease.org/touchedbylyme-queens-speech/ by Dorothy Kupcha Leland

British Lord Astor of Hever addressed Parliament with some pretty forceful words against the CDC/IDSA:

My Lords, I want to speak briefly on the specific health issue of Lyme disease, which is a rapidly increasing health risk in the United Kingdom. If Lyme disease is not treated early, it can cause significant illness and devastate affected patients’ lives. This is what life has been like for my daughter, and I declare this personal interest.

Many noble Lords will be aware that ticks harbour Lyme disease, as well as many other equally serious infections. These infections are passed to humans and animals via the bite of an infected tick, due to and during their method of feeding. The danger is no longer confined to rural areas, with ticks now being found in every county of the United Kingdom, and increasingly so in urban parks and people’s gardens.

If Lyme is diagnosed and treated early, the chances of a full recovery are good. However, failure to diagnose early and treat adequately can result in serious consequences to the patient. Tick-borne diseases that are misdiagnosed or neglected result in complicated infections, which have devastating and multisystemic consequences. Patients can be left with extremely debilitating and chronic symptoms, needing a wheelchair or completely bedridden, and enduring intense and relentless suffering.

Despite the increasing threat that Lyme disease poses to public health, there remain no suitable UK official guidelines for diagnosis or treatment. What we do have is outdated National Health Service guidance, relying on guidelines written by the Infectious Diseases Society of America and supported by the CDC. According to the National Guideline Clearinghouse of America, the IDSA-CDC guidelines are not fit for purpose. They are outdated and do not take into account recent developments in the understanding of these complex infections.

The absence of adequate guidelines is closely linked to the fact that insufficient levels of training are available to our doctors. Even if a positive test is obtained, expertise is seriously lacking, both in value of interpretation and in dealing appropriately with the illness. That stark statement is in accordance with multiple testimonies from patients. Expert patient input is crucial in turning the situation into a positive solution, not only for patients themselves but for the National Health Service as a whole.

Failure to meet the challenges of Lyme disease has led to unknown numbers of people becoming infected, but not diagnosed or treated. It could amount to tens or even hundreds of thousands of people. The UK now finds itself in a situation where patients with diverse illnesses and symptoms might actually have unrecognised Lyme disease.

In these patients, the infection could have reached a stage where treatment will be difficult and lengthy and will require the supervision of expert physicians, trained and experienced in this complex disease and the frequently occurring co-infections.

The cost to the Exchequer in terms of numbers of patients unable to work and using the NHS for serious health problems must be a truly staggering amount. Neither this country, nor affected patients, can afford this. Early recognition of symptoms and early treatment would save our National Health Service a great deal of money.

Given the huge cost, both in terms of the impact on the patient’s quality of life and, in practical terms, on our health service, it is clear how important it is to prevent as many cases as possible reaching this stage. Improvements in the training available to our doctors should be made a top priority. However, awareness among the general public of the risk posed by ticks should also be prioritised.

There are some very simple measures that can be taken to reduce one’s chance of becoming infected with Lyme disease. However, few people have any knowledge of this. How can we safely, and with a clear conscience, encourage children to play outside and make the most of the outdoors if we are carelessly allowing them to risk their health by contracting one of these insidious, infectious diseases?

Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen.

In the light of this, I ask my noble friend what his department is doing to ensure that GPs receive training in Lyme disease that is mandatory and thorough enough to allow them to make clinical diagnoses. Proper awareness will prevent the number of Lyme disease sufferers growing.

Lyme patients want to regain their health. They want to get back to work. They wish for nothing more than to regain control over their lives and take part in all the activities they enjoyed before they became ill. Most Lyme patients have the will and determination to achieve this.

But none of these aims can happen if they are sidelined and hobbled by misguided opinion—which includes the current health system situation, with its constraints and limitations.

 

 

Category:

Activism, Lyme, Testing