Archive for the ‘Lyme’ Category

When Will I Start to Feel Better?

https://www.treatlyme.net/guide/recovery-timeline-for-lyme-bartonella-babesia  Video Here

When You Might Start to Feel Better: The Lyme, Bartonella, and Babesia Timelines

In this video article, Marty Ross MD describes when you should start to feel better in your treatment. As Dr. Ross describes, it all depends on the which infections you are treating.

Resources

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**Comment**

This topic paramount, as patients desperately want their lives back.  At least I did.

I remember finding a man who was infected but had achieved his health back.  In a vast pool of sick people, he appeared to be a lone survivor.  Frantically, I emailed him for answers.  Per usual, he got right back to me with encouragement.  (This has been my experience time and time again.  Infected people “get it,” and immediately help those looking for it).

To be honest, I only remember one thing he said: “Don’t be depressed about feeling depressed.”  You may laugh, but that simple statement probably helped me more than any other advice, because this complex illness will truly sift you like wheat making you question your very sanity and your desire to continue with life.

I would compare having Lyme/MSIDS to being dropped behind enemy lines in an Arctic climate where you are given nothing but a toothpick and a shovel for survival.

I would love to say that I completely agree with Dr. Ross but it just wasn’t our experience.  Since both my husband and I are infected and have both waged this battle (and continue to wage it), I have two narratives I am quite intimate with – plus many other patients who tell me their stories.

Tracking improvement is like catching a greased pig.  Very hard to do.  Nothing about this is linear.  There are forward steps, stalls, and backward steps – sometimes within the same day!

I advise patients to keep a monthly calendar close by with lines on it for writing.  Write down your major symptoms every day.  This will really help if you are tracking others in your family as well.  If you don’t do this you will likely forget much of what you experience.

If possible, then take these notes and write or type up an executive summary noting the main symptoms.  This will help your Lyme literate doctor more than anything.  They are versed in the various symptoms and your documentation will show what infections are dominant at the time (and this varies from time to time.)

It is true that if you are not experiencing change (improvement or worsening) you are likely in a plateau which should indicate you need to change your treatment.  Be honest about this and talk with your LLMD about this so you are in agreement.  This is NOT an illness that you can just ‘trust the experts’ with.  You NEED to be a part of this unique partnership.  Admittedly, in the beginning you won’t know much and won’t be able to be much help, but in time you will become a quasi-expert.  I tell patients that doctors are experts in THE human body but you are the expert with YOUR body.  Your intel is indispensable to your physician.  If they don’t want your intel, it’s time to find a new doctor!

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Category:

Lyme, Psychological Aspects, Treatment

Wilderness Medical Society Writes Clinical Practice Guidelines for TBI’s. They Also Are Wrong

https://www.wemjournal.org/article/S1080-6032(21)00163-0/fulltext

Wilderness Medical Society Clinical Practice Guidelines for the Prevention and Management of Tick-Borne Illness in the United States

Published:October 09, 2021DOI:https://doi.org/10.1016/j.wem.2021.09.001
The Wilderness Medical Society convened an expert panel to develop evidence-based guidelines for the prevention and management of tick-borne illness (TBI). Recommendations are graded based on quality of supporting evidence according to criteria put forth by the American College of Chest Physicians. The guidelines include a brief review of the clinical presentation, epidemiology, prevention, and management of TBI in the United States, with a primary focus on interventions that are appropriate for resource-limited settings.
Strong recommendations are provided for the use of DEET, picaridin, and permethrin; tick checks; washing and drying clothing at high temperatures; mechanical tick removal within 36 h of attachment; single-dose doxycycline for high-risk Lyme disease exposures versus “watchful waiting;” evacuation from backcountry settings for symptomatic tick exposures; and TBI education programs. Weak recommendations are provided for the use of light-colored clothing; insect repellents other than DEET, picaridin, and permethrin; and showering after exposure to tick habitat. Weak recommendations are also provided against passive methods of tick removal, including the use of systemic and local treatments. There was insufficient evidence to support the use of long-sleeved clothing and the avoidance of tick habitat such as long grasses and leaf litter. Although there was sound evidence supporting Lyme disease vaccination, a grade was not offered as the vaccine is not currently available for use in the United States.  (See Link for article)
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**Comment**
Any document that refuses to include ILADS material is rigged.  In the conclusion the authors admit:
The recommendations presented in this CPG are largely consistent with those presented by the CDC (https://www.cdc.gov/ticks/index.html)
In essence they are telling us they’ve used tax-payer dollars to tell us nothing new.
  • These guidelines are a regurgitation of the accepted narrative by a supposed “expert panel” whom were chosen based on interest or research experience.
  • They essentially sifted through The Cabal’s research with keywords, and then looked at existing guidelines and CDC references – all of which are stacked against patients, but of course were peer-reviewed.
  • They didn’t even address the polarity which exists in both Lyme/MSIDS research and clinical practice.
  • The first glaring misnomer & simplification is that they state the black-legged tick is only in the Eastern US, despite independent research showing migrating birds are spreading ticks globally and that patients are infected globally.
  • While there is a greater risk of being bitten at certain times of the year, you can be bitten 24/7/365.  Never forget that and never let your guard down.
  • They continue to downplay transmission if you remove the tick before 72 hours.  Don’t buy it.  I know too many who have defied this 4-cornered box, including myself.  Remove all ticks ASAP.
  • They continue to push the one-dose doxy prophylactic treatment which doesn’t work. Neither does two pills. Unfortunately, researchers still believe the EM rash is some magical symbol.  The EM rash comes and goes at will and should never be a marker for effectiveness of treatment.
  • The EM rash is a poor indicator of Lyme, and highly variable, although if you have it, you ARE INFECTED WITH LYME, no testing needed – start treatment ASAP.
  • Ironically, if the doctor can’t identify the tick, or if attachment time is unknown, they still recommend the “wait and see” approach, even though that particular refrain has caused untold damage.
  • The “experts” then give a complicated diagram showing a triage of events (many of which are faulty) leading to either remaining in the field or evacuating.  In other words, they are asking you to again trust the “experts” and their four-cornered box which has been defied again and again.
  • And lastly, and certainly expected is their belief in a Lyme vaccine as an “attractive option,” despite the fact patients have literally been maimed by it.

Category:

Lyme, Prevention, research, Treatment

BBC: Lyme Disease

http://  Interview starts approx. 2:25:39

BBC: Lyme Disease

BBC Radio London interview The FIGHT LYME NOW Campaign with NHS GP Dr. Michael Wetzler 12/12/2021

Dec. 12, 2021

BBC Radio London INSPIRIT radio show presenter Jumoke Fashola interviews Demetrios Loukas and NHS GP Dr. Michael Wetzler of The FIGHT LYME NOW Campaign.

I believe this interview is only available for 29 days.

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Category:

Activism, Lyme

Lyme Disease Mimicing Sjogren’s Syndrome

https://lyme-time.com/2021/12/06/lyme-disease-misdiagnosed-sjogrens/

Can Lyme Disease Be Misdiagnosed As Sjögren’s?

Angelica Bottaro

Lyme disease is a tick-borne illness, often referred to as “The Great Imitator” because of its vast list of non-specific symptoms. Initial Lyme disease infection can present similarly to flu, and late-stage symptoms can be similar to arthritis. Because of this, Lyme disease is often misdiagnosed as other conditions. And since treatment for Lyme disease needs to occur quickly to rid the body of the borrelia bacteria, these issues with diagnosis can make it much more difficult to get proper treatment and fully recover from the disease.

One example of a health condition that can be mistaken for Lyme disease (or vice versa) is Sjögren’s syndrome. But what is Sjögren’s syndrome, how does it affect the body, and how can Lyme disease be misdiagnosed as Sjögren’s? Read on to learn more.  (See link for article)

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Summary:

  1. Primary Sjogren’s has an unknown reason or cause, whereas secondary Sjogren’s accompanies other autoimmune disorders.
  2. Genetics, hormones, viruses, and environmental factors all can play a role in autoimmune disorders.
  3. The most common symptoms of Sjogren’s are dry mouth and eyes but muscle and joint pain can often be experienced.  Patients can also have burning, red eyes with a feeling of grittiness, blurry vision, abnormal taste, difficulty swallowing, talking and chewing, persistent dry cough, dry & itchy skin, fatigue, enlarged salivary glands, tooth loss & decay, and vaginal dryness.
  4. It’s possible that Lyme can mimic Sjogren’s, making misdiagnosis also possible.
  5. A case study demonstrated that untreated Lyme caused a person to develop Sjogren’s. Other bacterial infections could have the same effect.
  6. The case report also reveals Lyme disease’s ability to cause more damage than previously thought.  Doctors should consider Lyme/MSIDS for ALL autoimmune diseases.

For more:

Category:

Lyme, research

Parvovirus B-19 or Fifth Disease & Lyme

https://sites.google.com/site/virginialyme/tick-borne-diseases/parvovirus-b19

Parvovirus B19

Parvovirus B19- Opportunistic, Chronic or Tick Borne?

Parvoviruses are some of the smallest viruses found in nature. Patients with chronic Lyme disease may test positive for parvovirus B19. Studies are needed to determine if parvovirus is reactivated after a Lyme infection in some people, if it is passed along by ticks with Lyme bacteria and many other known coinfections or if it is a chronic illness that can surface when the immune system is busy fighting new infections.

What is parvovirus B19 (aka “fifth disease or slapped-cheek syndrome)?”

Parvo B-19 is an illness that occurs most commonly in children. The child may have a “slapped-cheek” rash on the face and/or a lacy red rash on the trunk and limbs. Occasionally, the rash may itch. The child may have a fever, malaise, or a “cold” a few days before the rash breaks out. The rash may disappear on its own, with no treatment.

What causes parvovirus B19?

This particular virus (B19) infects humans. Pet dogs or cats may be immunized against “parvovirus,” but these are animal parvoviruses that are not known to infect humans. Therefore, a child cannot “catch” parvovirus from a pet dog or cat, and a pet cat or dog cannot catch human parvovirus B19 from an ill child.  (See link for article)

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**Comment**

Great reminder that COVID is not the only enemy out there.

A few points:

  • Adults can get B19 as well.
  • Patients with B19, as with any other virus, can also be asymptomatic (don’t have symptoms). About 20% don’t develop symptoms at all.
  • Besides the tell-tale facial rash, joint pain/swelling is also common.  Joints most affected are hands, wrists, and knees. Pain may resolve quickly or last months or even years.
  • B19 is contagious before the rash appears. It has been found in respiratory secretions and the patient appears to “just have a cold.”
  • Like most viruses, it takes 3-14 days to become infected and lasts up to 3 weeks.
  • Similarly to the EM rash being diagnostic for Lyme, the rash for B19 is also diagnostic. A blood test may be done to look for antibodies.
  • While B19 is typically mild, it can cause serious illness in those with sickle-cell or anemia (the rash rarely appears with these cases). Also, those with cancers, immune deficiencies, beneficiaries of organs, or who have HIV are also at risk for more severe illness.
  • While the article states that the only treatment is palliative care (aspirin, anti-itch medication, fluids, rest, etc.) there is also blood ozone, IV supplements, immune globulin, and anti-virals.

The article brings up a very important point: do ticks and other insects transmit these viruses (they are known to transmit many other viruses) directly or do they reactivate latent viruses within the body or both?  My wager is that both occur.

Lyme/MSIDS have been struggling with viruses due to tick-borne illness for decades. Here’s a list:

  • EBV(epstein-barr virus)
  • herpes
  • powassan
  • bourbon virus
  • deer-tick virus
  • heartland virus
  • Colorado tick fever
  • tick-borne encephalitis
  • Crimean-Congo hemorrhagic fever
  • Severe fever with thrombocytopenia syndrome (caused by SFTS virus)

The best treatment is to treat the underlying tick-borne infections and strengthen the immune system with adjunctive therapies that support the body. Also, many find anti-viral agents very helpful.

For more:

Category:

Lyme, Treatment, Viruses