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hypotemusea (@hypotemusea)

Small Fiber Neuropathy and genetic testing?

Neuropathy | Last Active: Oct 16, 2020 | Replies (28)

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@jenniferhunter

@hypotemusea I know this is a long response, but you may find some new directions to consider and I hope it gives you things to question so you can advocate for yourself..

Since you have been active outdoors hiking and rock climbing and have joint pain that has come somewhat suddenly, that raises a red flag as a possible exposure to Lyme disease. Often there is no bull's eye rash to indicate infection. Neurologists do sometimes test for this with a Western Blot test, but that test can be inaccurate. Lyme is often missed and can mimic other diseases like RA or MS and can lead your doctors on a wild goose chase because of similar symptoms and a patient lives with a treatable condition for years. Lyme is also accompanied by other co-infections that can be bacterial or parasitic and if a patient has these, different antibiotics are used to treat the various co-infections. Lyme is misunderstood by a lot of doctors and they don't have tests for some of the co-infections. The group that does specialize in Lyme are the ILADS group and they use the Igenex lab for more accurate testing. If you can rule out a Lyme diagnosis, that would be a positive step. If you do have Lyme, it is treatable. I've put information at the bottom of this post with ILADS protocols for treating Lyme and co-infections. If you can exercise, it helps because it raises the effective oxygen perfusion rates in your tissues, and oxygen can be toxic to bacterial infections. Since running caused a lot of pain for you, just walk instead and don't stress your joints and only do what doesn't cause more pain. Getting your Vitamin D levels optimized helps because that increases your immune system response. A doctor needs to test this before and after you take Vitamin D supplements because too much can be toxic. My doctor has me take K2 D3 supplements because Vitamin K2 regulates the D3 to prevent depositing calcium in your blood vessels which can be caused by Vitamin D3. Vitamin K is in a lot of vegetables and leafy greens, but many of us don't get enough in our diets, so having it with the supplement is beneficial.

This is like detective work and you need to keep looking until you find the source of your pain. Make a list or chart of everything you have tried and results of your tests. You might want to get copies of your medical records and start looking up what you find. You can learn a lot this way and your doctors could be on a wrong track, but you'll learn about how things can be eliminated or what to look out for. Food allergies can also cause joint pain and inflammation, so you might keep a record of what you eat every day in relation to when your pain gets worse. Environmental toxic mold exposure causes health issues. Sometimes a functional medicine doctor (or environmental medicine) can find causes that are missed by mainstream medicine. If you just accept this pain and take pain killing drugs, you won't understand why it happens. Question everything including any prescriptions you are taking and look up their side effects. You also mentioned PTSD, and you can work through that too. PTSD and stress can cause illness. I had some PTSD too and I got past my fears that had held me back. You can work through it and get to a place in your life where you are no longer limited by fear. When I finally understood where my fears came from and why, I was able to walk away and leave it behind. That journey will be different for everyone. If you can do this at such a young age, you'll be ahead of the game and you can look forward to good things ahead in your life.

I don't know if this is of interest, but there is a lot of research about how adverse childhood experiences can cause disease and auto-immune disease later in life. They use the term "ACE" as a score of how much childhood trauma a person has endured. If you search that online, you'll find self tests and information. I wanted to share a book by an author who recovered from autoimmune disease. I have not read this book, but I have one of her other books about overcoming life's adversity and how your biography of experience relates to disease later in life. She's an excellent medical writer and has been recognized in her field. Here's the book. https://donnajacksonnakazawa.com/autoimmune-epidemic/

Here are some other links to information.

Environmental Health Center in Dallas. https://www.ehcd.com/

Here is a lot of Lyme information.
https://www.vox.com/the-highlight/2019/6/18/18677511/lyme-disease-diagnosis-health
https://www.lymedisease.org/lyme-basics/co-infections/babesia/
Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.
https://www.ilads.org/research-literature/controversies-challenges/
https://iladef.org/education/lyme-disease-faq/
https://igenex.com/the-igenex-advantage/
The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
There is an educational documentary call "Under Our Skin" which profiles several patients and their treatment and controversy about Lyme. https://underourskin.com/

Here is a link that discusses ILADS antibiotic recommendations and for recommended number of days, scroll until you find it.
https://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900

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Replies to "@hypotemusea I know this is a long response, but you may find some new directions to..."

Jennifer, yes, yes, yes!!! Well done here!! You are so right, our testing in the United States for Lyme disease does not detect Lyme disease a lot of the time. Europe has a different testing system where the bands, whatever those are, are different. I read this book: "Believe Me: My Battle with the Invisible Disability of Lyme Disease" where she explains these bands and the differences between European and United States testing for Lyme disease. This is a compelling book. Yolanda went around the world do the most renowned medical and alternative Medical Specialists. She had grueling and costly treatment of all kinds imaginable. She eventually went through a terrible divorce with her husband music producer, David Foster. I haven't heard anyone beside you Jennifer, speak to this issue and it is so good to see it here! Thank you for this wealth of information and the resources! Many blessings to all, Sunny flower @hypotemusea

Hi Jennifer, thanks for all the info and advice! You are right that Lyme is a possibility. I lived in Eastern US for several years where I was outdoors a lot and also lived for some time in South American jungles and forests, although my home country is in Southeast Asia (where I currently am). I have friends who've dealt with chronic Lyme complications so I'm aware of how bad it can be. In my country here there's not as much awareness. I took a Lyme antibody test here, and it came back negative, although of course that doesn't really say anything like you pointed out.

As far as I'm aware I've been bitten by ticks twice, first time in upstate NY in 2015 and second time in rural Guatemala in 2018, I immediately took antibiotics the first time (having seen what Lyme can do I didn't want to take chances!) but not the second. My hunch is that it isn't Lyme because I don't really have joint pain? My main symptoms are the nerve pain, tingling, constant burning sensation in my hands and feet. I feel that the pain is more nerve-related, not so much the joints. I have pain in my elbows but they were very hypermobile so that might be the culprit. I don't really have any symptoms in the larger weight-bearing joints, fortunately. My rheumatologists did an ultrasound for my hands to look for inflammation and there was none. Steroids and anti-inflammatories had no effect on my pain.

So there's not much I can do to further the Lyme investigation for now while I'm here, but when I return to the US I'll definitely seek out a more experienced Lyme practitioner if my health issues still persist.

And thanks for bringing up PTSD as well. It's why I suspected RA at first given the documented links between PTSD and autoimmune diseases like RA… but I've done many comprehensive blood and antibody tests to find evidence of autoimmune issues and they all came back negative. It's certainly possible that I have something autoimmune going on that those tests are not finding, but I'm confident to rule out the big culprits like lupus and RA for now. It's certainly a detective hunt!