Numbness from head to toe, brain fog, vision problems, tinnitus, etc..

Posted by hopetoheal @hopetoheal, Dec 18, 2021

Hi all,

I am male and 54 years old.

For more than 6 months (permanently): 24/7 numbness from head to toe, brain fog, vision problems and eye floaters, severe tinnitus, intermittent poor concentration, burns in the head, electric shocks, pinching, migrating pain, feeling as if you're wearing socks when you're not, feeling cold/hot feet, fasciculations (twitching), all these acute symptoms appeared at the same time, currently I have no quality of life, I still feel in survival mode and no slacking off.

My diagnoses for years : Ankylosing spondylitis, Reiter's syndrome and Herniated disc.

All the tests I have done in the last 6 month:

Scan : Negative
MRI (Head) : Negative
EMG + 2 neurologists : Negative and they did not find anything abnormal
ENT : Negative
Blood tests : Negative
Lyme disease and co-infections (ArminLabs) : Positive (Borrelia, Bartonella, Ehrlichia and Chlamydia pneumonia)

My radiologist mentioned to me that according to my symptoms it could be connected with the peripheral nervous system namely the nerves leaving the brain to other areas of the body. Any abnormal functioning of the nerves has no effect on MRI scans. She also mentioned to me that my doctor must therefore continue to investigate, potentially with the help of a neurologist.

Unfortunately they have not found anything to date except my Lyme disease test that I took outside the country and that they do not seem to recognize.

Could it be that this could be a form of neuropathy caused by Lyme disease and co-infections or my autoimmune disease?

If anyone has any ideas or advice I would really appreciate it.

Thanks for reading!

Interested in more discussions like this? Go to the Neuropathy group.

Hello Hopetoheal and welcome to Connect. I am not sure what your test results are negative for, but it sound like you have a Lyme disease diagnosis in addition to the spine issues of a herniated disc and ankylosing spondylitis. That is enough to create neurological issues. You could be affected by both the Lyme and the spine issues producing overlapping symptoms. Electric shocks and burning tend to be nerve pain from physical compression of the nerve and could be caused from the spine issues if it is causing nerve root compression. Muscle twitching can also come from nerve compression.

Unfortunately Lyme disease is misunderstood by many doctors and it has a lot of coinfections, so it is group of infections that need treatment. Sometimes what kills off one bacteria doesn't affect the others. The doctors who are Lyme specialists are in the ILADS group.

Here is some information that may be helpful for Lyme.
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. The best answer to your question would be from an ILADS doctor who could explain the limitations of testing. 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 Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group. 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/

Hopefully through ILADS, you can find a Lyme specialist. If you already know you have this, it needs to be treated by a specialist who understands it. The Lyme mimics other diseases and will just confuse the diagnosing of the other problems. A single course of antibiotics won't touch it if the bugs are inside biofilms inside your body. The "Under Our Skin" documentary explains that discovery. Lyme does cause brain fog, but also low oxygen levels from lung disease will do that too. Sometimes it seems like it is a puzzle that you take apart and solve piece by piece. Seeing a neurologist to help figure out what is causing the neurological symptoms is a great start. I am a little surprised that you don't have a neurologist given the diagnoses that you already have. Have you been seen by a neurologist or spine specialist before? Do you still have a relationship with those doctors or are you starting over looking for new specialists?

REPLY
@jenniferhunter

Hello Hopetoheal and welcome to Connect. I am not sure what your test results are negative for, but it sound like you have a Lyme disease diagnosis in addition to the spine issues of a herniated disc and ankylosing spondylitis. That is enough to create neurological issues. You could be affected by both the Lyme and the spine issues producing overlapping symptoms. Electric shocks and burning tend to be nerve pain from physical compression of the nerve and could be caused from the spine issues if it is causing nerve root compression. Muscle twitching can also come from nerve compression.

Unfortunately Lyme disease is misunderstood by many doctors and it has a lot of coinfections, so it is group of infections that need treatment. Sometimes what kills off one bacteria doesn't affect the others. The doctors who are Lyme specialists are in the ILADS group.

Here is some information that may be helpful for Lyme.
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. The best answer to your question would be from an ILADS doctor who could explain the limitations of testing. 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 Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group. 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/

Hopefully through ILADS, you can find a Lyme specialist. If you already know you have this, it needs to be treated by a specialist who understands it. The Lyme mimics other diseases and will just confuse the diagnosing of the other problems. A single course of antibiotics won't touch it if the bugs are inside biofilms inside your body. The "Under Our Skin" documentary explains that discovery. Lyme does cause brain fog, but also low oxygen levels from lung disease will do that too. Sometimes it seems like it is a puzzle that you take apart and solve piece by piece. Seeing a neurologist to help figure out what is causing the neurological symptoms is a great start. I am a little surprised that you don't have a neurologist given the diagnoses that you already have. Have you been seen by a neurologist or spine specialist before? Do you still have a relationship with those doctors or are you starting over looking for new specialists?

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Good afternoon @hopetoheal and @jenniferhunter. I have read with interest the medical options that you two have presented. If history helps, I will share with you my experience with Reiter's syndrome. I was diagnosed with that after hiking in Europe about 1998 after eating lamb in Liechtenstein. Because of that diagnosis, my company's medical insurance dropped me. I tried private insurance and they also declined to help me after requesting and reviewing my medical tests. I can't remember the medication I was given. I do remember it had serious side effects. They were afraid I would be costly to them. Hopefully, things have improved.
Chris

REPLY
@jenniferhunter

Hello Hopetoheal and welcome to Connect. I am not sure what your test results are negative for, but it sound like you have a Lyme disease diagnosis in addition to the spine issues of a herniated disc and ankylosing spondylitis. That is enough to create neurological issues. You could be affected by both the Lyme and the spine issues producing overlapping symptoms. Electric shocks and burning tend to be nerve pain from physical compression of the nerve and could be caused from the spine issues if it is causing nerve root compression. Muscle twitching can also come from nerve compression.

Unfortunately Lyme disease is misunderstood by many doctors and it has a lot of coinfections, so it is group of infections that need treatment. Sometimes what kills off one bacteria doesn't affect the others. The doctors who are Lyme specialists are in the ILADS group.

Here is some information that may be helpful for Lyme.
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. The best answer to your question would be from an ILADS doctor who could explain the limitations of testing. 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 Western Blot test is not very accurate and does miss diagnosing Lyme Disease. That is a costly mistake to make if Lyme Disease goes un-diagnosed for years. The doctors who are the experts at treating Lyme are in the ILADS group. 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/

Hopefully through ILADS, you can find a Lyme specialist. If you already know you have this, it needs to be treated by a specialist who understands it. The Lyme mimics other diseases and will just confuse the diagnosing of the other problems. A single course of antibiotics won't touch it if the bugs are inside biofilms inside your body. The "Under Our Skin" documentary explains that discovery. Lyme does cause brain fog, but also low oxygen levels from lung disease will do that too. Sometimes it seems like it is a puzzle that you take apart and solve piece by piece. Seeing a neurologist to help figure out what is causing the neurological symptoms is a great start. I am a little surprised that you don't have a neurologist given the diagnoses that you already have. Have you been seen by a neurologist or spine specialist before? Do you still have a relationship with those doctors or are you starting over looking for new specialists?

Jump to this post

Thanks @jenniferhunter for your reply and for your valuable information!

Sorry if I did not specify, I consulted 2 neurologists and they did not find anything abnormal.

I haven't seen a spine specialist to date, only chiropractors, osteopaths and my rheumatologist who gave me an MRI 12 years ago and discovered my herniated disc.

My doctor continues to invest and is looking to what other specialists he can refer me to, most of them have quite long waiting times, 6 months or more.

REPLY
@hopetoheal

Thanks @jenniferhunter for your reply and for your valuable information!

Sorry if I did not specify, I consulted 2 neurologists and they did not find anything abnormal.

I haven't seen a spine specialist to date, only chiropractors, osteopaths and my rheumatologist who gave me an MRI 12 years ago and discovered my herniated disc.

My doctor continues to invest and is looking to what other specialists he can refer me to, most of them have quite long waiting times, 6 months or more.

Jump to this post

@hopetoheal Can you ask for a new MRI? A lot could have changed in 12 years especially with ankylosing spondylitis and a herniated disc and consulting a spine specialist may help. That may give you some answers as to what is going on.

I found this with tips about living well. https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/in-depth/6-tips-for-living-well-with-ankylosing-spondylitis/art-20478753
https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808
I am a spine surgery patient and saw significant changes on my MRIs in only 9 months time in that my bone spurs doubled. I had a ruptured C5/C6 disc that had collapsed 50% and bone spurs grew there trying to stabilize it. With that disc and the bit of instability I had in that one vertebrae slipped past another a bit, a chiropractor manipulation would have been very risky. I had no space left around my spinal cord and if anything moved significantly, it would have pressed even more into my spinal cord and could have caused damage. I had spine fusion surgery 5 years ago that relieved my pain. I say this because if you do not know the current condition of your spine, a chiropractor should not be doing anything. Usually they require some imaging first. I don't know if that is old history or something current. When a chiropractor does a quick adjustment, that can rupture a disc if there is one that is weakened. All I had to do to rupture my bulging disc was to turn my head. I was stretching my neck at the time, and I heard it pop and my head suddenly turned further. It was a weird sensation, but not painful, but that is what caused the bone spurs to grow from the inflammation from the ejected disc material.

All of this must be pretty confusing to your doctors as to what is causing the lion's share of the problem, and it may take some time to sort through it. Hopefully you can find a good Lyme literate doctor, and that may take a while to treat with improvement being gradual as each co-infection is addressed. Read through the treatment protocol and you will understand how involved it can be. That may not be covered by insurance because they may consider it to be experimental. You can also ask the lab who did your tests or the labs in the links I gave you to see what doctors are sending blood in for tests and you might find a doctor that way. Lyme can be pretty controversial and that leaves a patient without treatment, and chronic Lyme can cause a lot of problems for years if left untreated. Tick bites should be treated right away to prevent any infection from spreading and invading the rest of the body. It is harder to cure the longer it goes without treatment. Don't allow your doctors to disregard your test results. You need an opinion from a doctor who understands those tests.

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I had Lyme disease prior to onset of small fiber neuropathy. Is that a possible direct cause?

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First, my compassion for your physiological condition.

Second, I’ve experienced the same — for s year now. I was previously very athletic.

I too have Lyme (4 borrelia species…2 of which are called ‘exotic’ and little is known about them).

What is working for me:
Alpha Lipoic Acid (ALA): 1200mg
Berberine 500 mg at each meal (Thorne)
High Vit C

Recently…
Coconut suppositories…seem to be working really well.

Small fiber neuropathy is usually started in the GI Tract. And suppositories work well.

I used this product (note: they have a Lyme essential oil blend)
https://www.optimalhealthnetwork.com/How-To-Make-a-Coconut-Oil-Suppository-s/1194.htm
I’m now on the path of deeper GI cleanse in order to get to the other side of this.

Blessings & Comfort to you!!

REPLY
@kobe4thewin

First, my compassion for your physiological condition.

Second, I’ve experienced the same — for s year now. I was previously very athletic.

I too have Lyme (4 borrelia species…2 of which are called ‘exotic’ and little is known about them).

What is working for me:
Alpha Lipoic Acid (ALA): 1200mg
Berberine 500 mg at each meal (Thorne)
High Vit C

Recently…
Coconut suppositories…seem to be working really well.

Small fiber neuropathy is usually started in the GI Tract. And suppositories work well.

I used this product (note: they have a Lyme essential oil blend)
https://www.optimalhealthnetwork.com/How-To-Make-a-Coconut-Oil-Suppository-s/1194.htm
I’m now on the path of deeper GI cleanse in order to get to the other side of this.

Blessings & Comfort to you!!

Jump to this post

Where did you find that small fiber neuropathy starts in the gut? I would be interested in reading on the subject.
Since you take ALA. Read up on R Lipoic Acid which is much more bio available

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@pogo

Where did you find that small fiber neuropathy starts in the gut? I would be interested in reading on the subject.
Since you take ALA. Read up on R Lipoic Acid which is much more bio available

Jump to this post

Thank you!

Yes, important correction …small fiber nerves can affect enteric and peripheral nerves, but I believe the issue stems from infection in the spine (Lyme is such a potential).

The stomach is the 2nd largest location of nerve tissue (the heart is the 3rd, the brain, of course, is the 1st).
https://ameripharmaspecialty.com/small-fiber-neuropathy/
Thanks for the recommendation on R-LA. I just bought it but hadn’t tried it long enough to endorse. Your comment gives me more confidence!

Lastly, mindset matters a lot in our condition. Focus on where you want to go and not on where you are.

I highly recommend ‘Self Healing’ by Emile Couie. Chronic conditions take the mind into distress — it needs to be relaxed to perform its best.

His technique is simple: AM/PM affirmations stated with belief. And should pain arise — you say ‘it passes’, ‘this leaves’ etc.

This can fit into any religious or spiritual practice as well.

Best of health, Everyone!

REPLY
@kobe4thewin

Thank you!

Yes, important correction …small fiber nerves can affect enteric and peripheral nerves, but I believe the issue stems from infection in the spine (Lyme is such a potential).

The stomach is the 2nd largest location of nerve tissue (the heart is the 3rd, the brain, of course, is the 1st).
https://ameripharmaspecialty.com/small-fiber-neuropathy/
Thanks for the recommendation on R-LA. I just bought it but hadn’t tried it long enough to endorse. Your comment gives me more confidence!

Lastly, mindset matters a lot in our condition. Focus on where you want to go and not on where you are.

I highly recommend ‘Self Healing’ by Emile Couie. Chronic conditions take the mind into distress — it needs to be relaxed to perform its best.

His technique is simple: AM/PM affirmations stated with belief. And should pain arise — you say ‘it passes’, ‘this leaves’ etc.

This can fit into any religious or spiritual practice as well.

Best of health, Everyone!

Jump to this post

recommended ew to this group I am not sure if mentioning particular company ia appropriate but if you are interested and if there is way to private msg I will go into more detail

REPLY

I’m interested!

Not sure how to private message though.

Mayo moderators: Any support on private messaging?

REPLY
@kobe4thewin

I’m interested!

Not sure how to private message though.

Mayo moderators: Any support on private messaging?

Jump to this post

@pogo and @kobe4thewin – Here's how to send a private message.

1. Click the member's username. This will bring you to the member’s profile page.
2. Click Send Private Message.
3. Send PM
4. Write a subject and your message.

More how to's in the following discussion – [TIP] How to Use Connect: Step-by-step Instructions: https://connect.mayoclinic.org/discussion/tip-how-to-use-connect-step-by-step-instructions/

REPLY
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