Tuttle’s Letter to the TBDWG — Madison Area Lyme Support Group (Blog Post Share)

This is something everyone should read.

“There are rumors that Dr. Eugene Shapiro has been selected to participate as a member of the Tick-borne Disease Working Group. Shapiro has spent a career discrediting the sick and disabled along with the courageous clinicians attempting to help these patients as he coauthored the deplorable Lancet article referenced below. There is no place for Shapiro on the TBDWG as he is a disgrace to the medical profession.” Continue reading “Tuttle’s Letter to the TBDWG — Madison Area Lyme Support Group (Blog Post Share)”

Petition: Pass H.R.220 – Ntl. Lyme and Tick-Borne Diseases Control and Accountability Act of 2019

Please sign, and share.

https://www.change.org/p/house-committee-on-energy-and-commerce-pass-h-r-220-ntl-lyme-and-tick-borne-diseases-control-and-accountability-act-of-2019?recruiter=185100571&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=Search%3ESAP%3EUS%3EBrand%3EProper%3EExact

Re: “Lyme disease remains confusing” – My letter to the Editor(s), and Author.

Imagine my hopefulness when seeing this headline on the front page of our local paper! Needless to say, I was encouraged to see Lyme mentioned, but my hopes for an actual unbiased, fact-based piece of journalism were soon dashed. Continue reading “Re: “Lyme disease remains confusing” – My letter to the Editor(s), and Author.”

Faith, Hope, and Complacency.

“Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane.“ – (Red) The Shawshank Redemption.

Hey everyone,  I guess it’s been awhile. To be honest, I just haven’t felt inspired enough, or angry enough to crank out a post. My apologies, but, as you know, such is the life of a person with a chronic illness…

Let’s just call it what it is: CHRONIC LYME DISEASE.

Yes, it does exist, and no matter what you are told, it’s NOT all in your head.

I was reminded of this, quite abruptly, while watching “The Bleeding Edge” on Netflix. Follow the link, and read the article. If you have any kind of man made parts in your body, brace yourself. Then, come back, and read my rant.

Continue reading “Faith, Hope, and Complacency.”

This really “bugs” me…

In this information age, it is a daunting task to sift through all of the misinformation out there. Even seemingly small things, such as calling a tick a “Lyme Tick”, or assuming that only Dog ticks feast on dogs…SMH… can result in confusion, causing people to put off seeing a doctor, under the assumption that there is no risk.

If you have Lyme Disease, or any vector borne illness, you already know how difficult it is to be properly diagnosed, and treated. You have most likely been ridiculed, dismissed, or labeled “nuts”. Chances are, you have been told that your test results showed a false positive result, or, that there is no such disease in the area you live in.

This lack of concern, and denial, often results in chronic conditions, and a lifetime of pain.

Continue reading “This really “bugs” me…”

More on Lyme, and Skin: “Acrodermatitis Chronica Atrophicans”

I learned about ACA a few months ago, but it was mentioned in an article I read this morning, so I took that as a hint to look further.

For well over three years now, I have had what the doctors like to call psoriasis. I have been referred to a dermatologist, who was useless, asked no pertinent questions, and said “…here…use this cream.”. Even my PCP has sent me home with creams. These topical treatments do not work on my skin issues.

These skin issues, first appeared on my right upper arm. They then also presented on my left forearm, and upper back, at my shoulders. They can come in the form of just a little blister like dot, or a patch of what looks, and feels like dry skin. Sometimes they itch, and sometimes they don’t. They never fully heal, and sometimes, leave scars that are ugly, and thick.

I learned about ACA a few months ago, but it was mentioned in an article I read this morning, so I took that as a hint to look further. This is the article: Pathogenesis, and Clinical Manifestations of Borrelia burgdorferi

  • The third stage is usually characterized by chronic arthritis or acrodermatitis chronica atrophicans (ACA), a diffuse skin rash, and may continue for years.

I have had a little post it, sitting on my desk for months, and I keep forgetting to pass it on to my doctor. A reminder, forgotten in a pile of paperwork. I won’t forget again.

Because ACA is primarily found in older individuals, and late stage infections of BB/Lyme Disease, it is often not connected initially, because of forgotten tick bites, improper diagnosis of Lyme, and/or disbelief in Chronic, or Late Stage Lyme Disease.

Progressive allodynia (exaggerated reaction to pain) is a characteristic symptom and thus may be a clue to the diagnosis of ACA. Patients commonly report spontaneous acral pain and paresthesia or dysesthesia or cognitive dysfunction.

Read more here:  Acrodermatitis Chronica Atrophicans Clinical Presentation

Unfortunately, in order to be diagnosed with ACA, you would need to, at some point be diagnosed with Lyme Disease, or be considered to have Chronic, Late Stage Lyme. To top it all off, and much to my disappointment, the treatment for this skin disorder, is basically the same as the treatment for Lyme, that many have been denied.

Antibiotics.

Approach Considerations

The choice of treatment for acrodermatitis chronica atrophicans (ACA) depends on the coexistence of other signs or symptoms of Lyme borreliosis. One should also take into account the results of serologic tests. If not treated early, ACA can be associated with joint manifestations and persistent finger deformities.

 

“Borrelia burgdorferi infection was diagnosed with enzyme-linked immunosorbent assay, indirect immunofluorescence assay (titer: 1:1,024), and Western blot. Histologic examination confirmed the diagnosis of acrodermatitis chronica atrophicans”. 

 

Pharmacologic Therapy

If extracutaneous Lyme borreliosis signs are absent and the level of specific antibodies is low, the authors usually recommend oral doxycycline or oral amoxicillin administered over a period of 3 weeks.  READ MORE

Because the initial cause seems to be a chronic infection of LB, and also because this infection is surrounded by controversy,  and is often denied due to inaccurate testing, it again, falls on the shoulders of Lyme Literate medical providers, and patients themselves to research, and present facts to the communities involved. It seems to me, that with knowledge of ACA, we can reverse diagnose to LB, and hopefully find a treatment that works for both.

Please pass along this info to anyone who needs it. I have also posted the reference links below.

References:

Note: The reader may notice, that some articles state, a rarity in the US, and the mention of several different strains of Borrelia. Keep this in mind. This is why many tests for Borrelia are inaccurate.

If you feel that you might have this condition, present facts, and reference material to your health care provider. We need to increase awareness.

More of my posts about skin issues, and lyme.

…a Redress of Grievances.

I believe that it is not only our right, but also, our responsibility to speak up when we feel the need. The Lyme Pandemic surely indicates a need.

This morning, in one of my groups, on Facebook, a woman posted that she & her husband had sent a letter to President Trump regarding the Lyme crisis, how it has devastated her family, and the corruption within the CDC, and IDSA.

The response from the White House was predictable:

Lymeprez.

Now, I’m sure we all know that this is a standard response to just about any subject matter, but  Lyme Disease, is not just any subject, to those who suffer with it daily.

If you have Lyme, you know how this reads. It reads like another off handed dismissal of our condition. Unfortunately, no matter who we write to, or what the cause, chances are we will receive the same type of form letter in return. We deserve better. Yet, we cannot blame the current POTUS. This is not his fault. Every politician has staff. Every office has policies to follow. The form response, is an example of this.

In response to the people who made this all about Trump:

Our health is far more important than whether we like, or dislike the current President.

Moving on. OK?

I think we have an opportunity here. (After all, he did just release (most of) the JFK files.)

#LymeLettersforChange is not a new campaign. You can find the page on Facebook. Their events page has detailed info about the campaign, and instructions. Although you may have missed out on this event, or had been unable to participate, there is much you can still do. Either contact the ladies at “Lyme Letters for Change“, or strike out on your own. You can even write to the Editor of your local newspaper, or to those celebrities who have recently publicly admitted to suffering with Lyme Disease. Every letter helps to educate, and increase awareness. This is not about politics, this is about our lives, and our right to be treated fairly.

The First Amendment to the US Constitution guarantees the right of all citizens to communicate with their elected representatives:

“Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

I believe that it is not only our right, but also, our responsibility to speak up when we feel the need. The Lyme Pandemic surely indicates a need.

Q: Who should I write to?

A: Members of the Senate, Listed Here, and House of Representatives,  a.k.a congressman/congresswoman. Listed Here. Click on the name to be taken to their website.

Q: Can I write to the President?

A: Yes. GO HERE.

Q: How do I write a letter to a representative?

A: Here are some tips. How to write effective letters to Congress.

Here are some issues that are important to us:

  1. Funding for research into accurate testing, treatments, and cures for all stages of Lyme Disease, and co-infections.
  2. Recognition of Lyme Disease as a potentially chronic, persistent infection.
  3. Acceptance of Chronic Lyme Disease and its symptoms as a debilitating illness, addition of Lyme Disease to the SSA’s list of Impairments.
  4. Allow Doctors to treat persistent Lyme Disease as they see fit, without fear of prosecution, or persecution.

I’d also like to add, as a side note, that every healthcare professional, should be required to take some sort of sensitivity training, so they can at least pretend to believe that we have Lyme Disease, and that it is a serious, potentially deadly illness, whether they believe it or not. <Sarcasm>

So, there you have it. We can all do something to advocate for ourselves, and others. We can write letters, call, or send email. Simple, and relatively inexpensive ways to make our grievances known.

The squeaky wheel gets the grease.