Chronic Advocate

Lyme treatment, although life-changing or even life-saving, can be rough. Things tend to get worse before they get better. Herx reactions can make pre-existing Lyme symptoms worse and cause flu-like symptoms. They occur when the bacteria starts to die off and release toxins that the body struggles to clear straight away. Things tend to get better after a good herx. Frustratingly though, it can be incredibly difficult to tell the difference between a herx reaction, an autoimmune flare triggered by the treatment, or a general adverse reaction. A week ago I started more intensive treatment after 2 years of treatment that saved my life and allowed my quality of life to go from 1/10 to 6/10 - starting the new treatment has increased my tics, caused me to fluctuate between extreme tiredness and hyperactivity, caused sleep issues, a gut issue flare, a slight increase in weakness and a increase in POTS symptoms. Hopefully it is a herx reaction that will pass and leave me better off afterwards!

1 year ago | [YT] | 5

Chronic Advocate

Test for different strains!

It’s not just Borrelia burgdorferi (Lyme) that you need to test for.

You need to test for other strains such as Borrelia garinii, Borrelia mayonii, Borrelia miyamotoi, Borrelia turcica, Borrelia turicatae, Borrelia lusitaniae, etc.

Testing negative for Lyme (Borrelia burgdorferi) doesn’t mean that you don’t have another strain causing similar symptoms. The NHS will pretty much never test for these other strains, and many Lyme doctors also ignore the need for testing other strains. The Tickplex test I got done by Armin labs didn’t test for these other strains either.

I only learnt about other strains when I went to a tick borne disease specialist and they pointed out that I had symptoms similar to Hard Tick Relapsing Fever (Borrelia Miyamotoi) as well as antibodies to Borrelia Burgdorferi (Lyme.)

You don’t just need testing for Bartonella henselae, you also need to test for other strains of Bartonella such as Bartonella quintana, Bartonella vinsonii, and Bartonella elizabethae.

I assumed two years ago that I likely didn’t have Bartonella as I tested negative to Bartonella Henselae, but little did I know that other strains exist that were not tested for as part of the Tickplex panel and... testing negative for antibodies doesn’t mean that you don’t have it. Having antibodies means that you are mounting an immune response to the bacteria, but some people’s immune systems are so weak that they don’t even mount an immune response despite being infected. This is why Vibrant wellness not only tests for antibodies, but does PCR testing as well. Armin labs offer Elispot and ispot as an alternative to antibody testing.

These are hundreds of stealth infection strains that can cause chronic illness symptoms, including neurological issues. Many people get misdiagnosed with issues like ME/CFS, Fibromyalgia, FND, Multiple Sclerosis, and more when they actually have a chronic infection that can be treated with a very specific mixture of long-term antibiotics or other interventions. This is why I have so much anger towards the mainstream healthcare system.

In an ideal world, everyone with those diagnoses would get thorough tick-borne disease testing. You do not need to remember a tick bite to have a tick-borne disease. I have no recollection of ever having a tick on me but still tested positive for antibodies against Borrelia Burgdorferi (Lyme) and saw improvement with long-term Lyme treatment.

Many people don’t realise that sometimes what is called a lifelong chronic illness is actually a chronic infection that CAN be treated. Most people with stealth infections have no idea they have them and go around thinking they have ME/CFS, FND, Fibromyalgia, etc. You HAVE to do your own research and find answers yourself if you want a proper solution. Not everyone with the above diagnoses will have a stealth infection but quite a few will.

We need to live in a world where this kind of stealth infection testing isn’t thousands of pounds as this makes it inaccessible to most people. We also need to live in a world where the NHS and other universal healthcare systems will actually provide long-term treatment for these infections because right now we are forced to spend hundreds or even thousands a month on healthcare for these issues.

Skip the Carousel

1 2 3 4 5

1 year ago | [YT] | 6

Chronic Advocate

The Ticcer's Guide is filled with everything I wish I knew much earlier on - with information about OCD, PANDAS/PANS, other co-occurring conditions. It is available on amazon with both hardback (gold) and paperback (blue) options.

#tourettes #tics #tourettesyndrome #ticdisorder #neurodivergent #ticcer #tourette

Skip the Carousel

1 2 3 4 5

1 year ago | [YT] | 19

Chronic Advocate

Having Persistent Lyme makes it feel like you’re searching in the backrooms for medical care...

Chronic / persistent Lyme doesn’t tend to be recognised by the mainstream healthcare systems in the UK, USA, or Canada despite the fact that over 700 peer-reviewed scientific articles and studies show that Lyme and co-infections can be resistant to antibiotics and therefore be chronic.

The International Lyme and Associated Diseases Society recognises the need for long-term Lyme treatment, but the medical systems do not provide this.

We are stuck with no option but to seek private medical care at the few specialist clinics, and sometimes travel abroad for appropriate care.

Mainstream Lyme tests only have a 50% accuracy rate, so we end up having to order tests from private testing companies overseas to find answers.

When most doctors see people with Lyme symptoms such as weakness, fatigue, migrating pain, dysautonomia, and post-exertional malaise - they misdiagnose it as ME/CFS or Fibromyalgia, leaving people to suffer without treatment.

The only way I found answers was by going outside of the conventional medical system and ordering my own private tests, then finding a way to treat my condition and finding specialist clinics that would be able to prescribe medication, but it is expensive.

Having a condition that isn’t recognised by the mainstream healthcare service, like Chronic Lyme, makes you feel isolated, like no one will ever understand.

It also makes your heart ache for all of the people out there who haven’t been able to look outside of the conventional medical
system or get overseas
testing. The people
misdiagnosed with
ME/CFS, Fibromyalgia, MS, and more - left to suffer.

1 year ago | [YT] | 5

Chronic Advocate

The Ticcer's Guide is out now and available on Amazon! ❤️🎉 I started creating this at the age of 16 and have finally been able to put it all together and publish it.

Here is the link: www.amazon.co.uk/Tourette-Syndrome-Ticcers-Tourett…


Chapters include:

Chapter One: Conditions That Cause Tics
Chapter Two: Types Of Tics
Chapter Three: Management Strategies (includes both conventional and alternative / natural)
Chapter Four: Tic Suppression
Chapter Five: Co-occurring Conditions
Chapter Six: Obsessive Compulsive Disorder
Chapter Seven: PANDAS/PANS
Chapter Eight: Rage Attacks
Chapter Nine: Tourette's Throughout The Lifespan
Chapter Ten: Coping With Tourette's in School
Chapter Eleven: Tourette's In Public
Chapter Twelve: Empowerment and Community
Chapter Thirteen: Tourette's and Mental Health
Chapter Fourteen: Tics Through The Seasons
Chapter Fifteen: Why Are Symptoms More Prominent In Certain Environments?
Chapter Sixteen: Tourette's and Identity
Chapter Seventeen: Tourette's In The Workplace
Chapter Eighteen: "Mild" vs Severe Cases
Chapter Nineteen: Advocacy
Chapter Twenty: Final Thoughts

I hope this book can empower people with TS and related conditions and help family members understand!

#tourettes #tourettesyndrome #tics #pandaspans #tourette #tourettic #ticdisorder #neurodivergent

2 years ago | [YT] | 9

Chronic Advocate

Please read and share this post I wrote on my website about why the proposed changes to disability benefits in the UK are dangerous:

www.ticcersunite.com/post/why-the-uk-governments-p…

2 years ago | [YT] | 3

Chronic Advocate

Less than one month to go - thank you to everyone who has voted for me so far www.nationaldiversityawards.co.uk/awards-2024/nomi…

2 years ago | [YT] | 1

Chronic Advocate

Wild that some people will "warn against" something that gives Autistic people the ability to communicate. You don't need countless studies done when the evidence is right there in front of you. Schools are supposed to have an individualised approach anyway rather than assuming everything is one size fits all! It should be common sense that if a person cannot speak - see if there is a way for them to spell or type. Maybe the "specialists" are just afraid that when more Autistic people can communicate freely, there will be more of us talking about how the system fails us.

2 years ago | [YT] | 3

Chronic Advocate

Why changing the name of Tourette Syndrome would be devastating...

Some clinicians are considering renaming Tourette Syndrome. They also considered this 5 years ago despite TS advocates being unhappy with this. Having doctors obsessing over the name is a waste of time and resources, we should be focusing on how to better support people with the condition.

1.Renaming the condition will mean that families with the new diagnosis may struggle to find resources made by people who have lived with Tourette syndrome for longer as the terminology may be different. We often do not get adequate support or information from the doctors so people need to be able to find content created by experienced Touretters.

2. Over the past few decades, the community has worked tirelessly to raise awareness of TS. At age 12 I was afraid to say the word “Tourette” due to the stigma, but I now have no issue with it because of the hard work many advocates have put in to change perceptions of the condition. Changing the name would mean these efforts were all a waste.

3. Tourette’s is much more than tics. Calling it “Primary Persistent Tic Disorder” would ignore the fact that 40% of Touretters have rage attacks, 80% have sensory processing issues, and many of us have Obsessive Compulsive Behaviours and ADHD traits even if we don’t meet full criteria for OCD or ADHD. Calling it Primary Persistent Tic Disorder would ignore all of these other traits that can sometimes impact us more than the tics themselves.

4. Part of the reason doctors wanted to rename it was the stigma, but the stigma is just the idea that Tourette’s is about swearing, which for some of us it actually is. A large proportion of my tics are swearing ones, but I do have many other tics as well. The problem is that renaming the condition just because people don’t want to be associated with those of us with Coprolalia just further ostracises those of us with this complex tic.

5. Tourette’s becomes part of our identity, it becomes part of who we are. A lot of us have started using terms like “Touretter” or “Tourettic” to feel empowered and accept ourselves... if this changes then we may lose these terms that we have become so comfortable with after years of learning to accept ourselves.

6. Renaming the condition would allow parts of it to be redefined, which I think is a terrible idea seeing as many TS specialists don’t properly listen to people who actually have TS, treat suppression like a solution, and are psychologists when TS is a neurological condition. Redefining it could also lead to people’s diagnosis being changed, leading to improper management.

7. A new name could mean that videos, books, blogs, articles, and other resources containing the term “Tourette Syndrome” will one day become obsolete. We need this content to stay current so that people can get information on Tourette Syndrome that is well-established and backed by decades of research and experience.
Doctors considered changing the name years ago but appeared to stop after the TS community were unhappy with it, so why are they trying again?

If they know that many TS advocates oppose a name change, why are they trying again?
I feel like they just don’t want to admit that they don’t really know how to help people with TS, so they just have debates about the name to make it look like they are doing something.

To take a survey on the name, the links are below:

Those with Tourette's: forms.office.com/e/weQ9cJCK41
Carers of people with TS: forms.office.com/e/LcZBYe77su
Healthcare workers: buff.ly/48WOlIR

2 years ago (edited) | [YT] | 11

Chronic Advocate

If you are the parent of someone with Tourette Syndrome or tics, please take some time to read this post I made on Instagram and read the comments under it: www.instagram.com/p/C5VYvblNaUA/

2 years ago | [YT] | 4