Keeping a master list of all abnormal results in my case

[frozenborderline]

Starting now and off the top of my head.

I will have a caregiver go back to the actual documents to find details as they come up. For now , however, I will post that something is out of range without specific number as I'm going from memory.

Abnormal Clivo axial angle, on two separate mris, first upright with flexion and extension, second one supine. 136, 135, both in neutral, substantially less in flexion. Dynamic bdi from upright mri was abnormal, forget number though. My dynamic bdi under invasive traction was abnormal/pathological.

Low IgG, both low total IgG and specific classes of IgG. This was one of the first abnormal results I've had. And consistent. Don't know why it was never addressed.

Low IgA.

High IgE... makes sense with mcas...

High eosinophils, they're basically ALWAYS high. Apparently related to parasites or allergy/inflammation.

High tryptase, high histamine, on multiple occasions. Mcas markers plus apparently tryptase degrades connective tissue.

High mmp-9, at least high with the range set by shoemaker. Inflammatory cytokine that is related to connective tissue damage.

Low VEGf... related to perfusion problems maybe

Some minor disc bulging or spinal canal narrowing.

Confusing results with my two nerve fiber biopsies ?

 

[pattismith]

Confusing results with my two nerve fiber biopsies ?

Do you have the result of your skin biopsies?

 

[Learner1]

Starting now and off the top of my head.

I will have a caregiver go back to the actual documents to find details as they come up. For now , however, I will post that something is out of range without specific number as I'm going from memory.

Abnormal Clivo axial angle, on two separate mris, first upright with flexion and extension, second one supine. 136, 135, both in neutral, substantially less in flexion. Dynamic bdi from upright mri was abnormal, forget number though. My dynamic bdi under invasive traction was abnormal/pathological.

Low IgG, both low total IgG and specific classes of IgG. This was one of the first abnormal results I've had. And consistent. Don't know why it was never addressed.

Low IgA.

High IgE... makes sense with mcas...

High eosinophils, they're basically ALWAYS high. Apparently related to parasites or allergy/inflammation.

High tryptase, high histamine, on multiple occasions. Mcas markers plus apparently tryptase degrades connective tissue.

High mmp-9, at least high with the range set by shoemaker. Inflammatory cytokine that is related to connective tissue damage.

Low VEGf... related to perfusion problems maybe

Some minor disc bulging or spinal canal narrowing.

Confusing results with my two nerve fiber biopsies ?

This is a great list. Sounds like you have some very treatable problems. How are you doing at addresing them?

 

[frozenborderline]

This is a great list. Sounds like you have some very treatable problems. How are you doing at addresing them?

I have treatable problems, but my main me/Cfs doctor ignores them, is extremely scattered, etc. For cci, I'm seeing aneurosurgeon, but I'd like to see a doctor that can address the inflammation and immune problem that caused the cci in first place. I do treat some low hanging fruit like mcas, and some pots treatments. And re inflammation, actually going to pristine wilderness achieved better results than even the highest doses of mcas meds or ldn. I achieved my best improvements ever from that. Went from bedridden to walking about a half mile and went from barely able to read a paragraph to reading dante's inferno. However I got covid last March and that set me back almost all the way to previous baseline of severe illness. It's a nasty bug, even if you are doing everything else right. It seems to have worsened my spinal problems a lot... which were never treated

I don't know treatments for lowering tryptase directly. Mmp-9 is one I've wanted to work on.

I also don't know of any treatments besides ivig or scig for immunoglobulins. That seems like an important thing to address but without a doctor ordering those treatments it doesn't seem like something one can self treat with supplements.
Anyway my main problem is cci, but besides surgery I want to get at the root of why the inflammation and why my spine is degenerating
I actually wonder if I had preexisting immune problems before I got the lyme that started me me/cfs.

 

[frozenborderline]

I'd like to get anti ccp antibodies testing and everything relevant to joint damage and inflammation and arthritis.

 

[frozenborderline]

Do you have the result of your skin biopsies?

Results
Diagnosis
A. Lt thigh. Sweat gland nerve fiber density: Skin with significantly reduced Sweat gland nerve fiber density consistent with small fiber neuropathy
B. Lt Calf.

Sweat gland nerve fiber density: Skin with significantly reduced Sweat gland nerve fiber density consistent with small fiber neuropathy


Diagnosis
A. Lt Thigh skin biopsy
Skin with normal epidermal nerve fiber density
B lt Calf
Skin with normal epidermal nerve fiber density.

 

[frozenborderline]

Results
Diagnosis
A. Lt thigh. Sweat gland nerve fiber density: Skin with significantly reduced Sweat gland nerve fiber density consistent with small fiber neuropathy
B. Lt Calf.

Sweat gland nerve fiber density: Skin with significantly reduced Sweat gland nerve fiber density consistent with small fiber neuropathy


Diagnosis
A. Lt Thigh skin biopsy
Skin with normal epidermal nerve fiber density
B lt Calf
Skin with normal epidermal nerve fiber density.

The doctor didn't say anything about this , but it seems maybe abnormal?

 

[frozenborderline]

According to this website a sweat gland nerve fiber problem can be a part of autonomic neuropathy.
Autonomic and Small Fiber Neuropathies
Sweat glands are exocrine glands in the deep dermal and subcutaneous layers of skin, whose function is to maintain the body’s temperature and hydration.

1.
Jablonski N. The naked truth. Sci Am. 2010;302(2):42-49. [PubMed]
" style="box-sizing: border-box; font-size: inherit; line-height: inherit; border-style: solid; border-width: 0px; margin: 0px; padding: 0px; -webkit-font-smoothing: antialiased; text-rendering: optimizelegibility; -webkit-appearance: none; user-select: none; cursor: pointer;">1 They are innervated by the autonomic nervous system that also regulates other involuntary bodily functions such as heart rate, blood pressure, the bladder, and gut. Symptoms of autonomic neuropathy can include abnormal sweating or temperature regulation, postural hypotension, irregular heart rate, gastroparesis, irregular bowel movements, incomplete bladder emptying, urinary urgency, sexual dysfunction, hair loss, and atrophic nails or skin, among others

 

[wigglethemouse]

High tryptase, high histamine, on multiple occasions. Mcas markers plus apparently tryptase degrades connective tissue.

In case it helps here is some info on mast cell testing from ARUP.

Overview
https://arupconsult.com/content/mast-cell-disorders

Testing Flow chart
https://arupconsult.com/algorithm/mast-cell-disorders-testing-algorithm

Genetic Testing if high Tryptase (D816V mutation. Possibly TPSAB1 testing as well but couldn't find that on ARUP)
https://ltd.aruplab.com/Tests/Pub/3002956

 

[pattismith]

The doctor didn't say anything about this , but it seems maybe abnormal?

it's strange that he didn't talk with you about it.

Do you have hair loss on the low leg? (As you have autonomic SFN, you may have it)

 

[Learner1]

Results
Diagnosis
A. Lt thigh. Sweat gland nerve fiber density: Skin with significantly reduced Sweat gland nerve fiber density consistent with small fiber neuropathy
B. Lt Calf.

Sweat gland nerve fiber density: Skin with significantly reduced Sweat gland nerve fiber density consistent with small fiber neuropathy


Diagnosis
A. Lt Thigh skin biopsy
Skin with normal epidermal nerve fiber density
B lt Calf
Skin with normal epidermal nerve fiber density.

SFN and low total Immunoglobulins and subclasses are treatable with IVIG or SCIG. Do your research on these and advocate for yourself.

 

[frozenborderline]

Do you have hair loss on the low leg?

Nope. I do have pots, sensory and digestive problems, and cci , but no hair loss

 

[frozenborderline]

SFN and low total Immunoglobulins and subclasses are treatable with IVIG or SCIG. Do your research on these and advocate for yourself.

Wrt advocating for myself, this is something I've asked my doctors about foryears, and they just generally say no. One of them was open to scig but not ivig but then changed mind. So the only way to get it would be a new doctor. Which is on the table. But I have to fundraise for it first. My plan is kaufman or ruhoy, or both.

 

[frozenborderline]

SFN and low total Immunoglobulins and subclasses are treatable with IVIG or SCIG. Do your research on these and advocate for yourself.

Do u think that single result, even with the normal epidermal result, is significant? I'm just incredibly confused why the doctor who ordered it, and wanted it done, wouldn't inform me about an abnormality. I mean why would they order it if they dont intend to tell me abnormal results?

 

[pattismith]

Do u think that single result, even with the normal epidermal result, is significant? I'm just incredibly confused why the doctor who ordered it, and wanted it done, wouldn't inform me about an abnormality. I mean why would they order it if they dont intend to tell me abnormal results?

This paper was just released in December. It says Sweat Gland nerve Fiber Density is reliable test for SFN .
you were very lucky to have this test done, it's not a easy test!

"Sweat gland nerve fiber density

Sweat glands are innervated by cholinergic sympathetic post-ganglionic C-fibers. Since those lay peripheral, are long, thin and have no myelin, they are prone to nerve damage in many neuropathies. Deteriorated sudomotor function shows to be a reliable predictor for SFN [55, 56]. Sweat gland nerve fiber density (SGNFD) decreases and sweat gland atrophy appears in SFN [57, 58]. SGNFD can be determined with the same biopsy diameter and staining used for IENFD, but requires thicker skin biopsy. Although data confirms validity of assessing SGNFD [57, 58]. it is labor intensive (requiring 30–40 hours to evaluate one biopsy) and not suitable for routine use in clinical settings [58]."

Current View of Diagnosing Small Fiber Neuropathy - IOS Press

 

[frozenborderline]

This paper was just released in December. It says Sweat Gland nerve Fiber Density is reliable test for SFN .
you were very lucky to have this test done, it's not a easy test!




Current View of Diagnosing Small Fiber Neuropathy - IOS Press

Whoa. Very helpful.

 

[frozenborderline]

Low IgG, both low total IgG and specific classes of IgG. This was one of the first abnormal results I've had. And consistent. Don't know why it was never addressed.

Low IgA.

High IgE... makes sense with mcas...

This page suggests that trifecta goes together and is present in many autoimmune disorders.
https://emedicine.medscape.com/article/885348-clinical#b1


I think getting to the root cause will be important. Has anyone found darren lynch to be helpful with this ??

I have q friend that is talented in biology , when taking ADHD meds, which she hadn't been prescribed until recently. She did as much research on this stuff in a day as I did in years. That's why I'm saying I need help. Paying someone like that would be useful , it would pay for itself

 

[frozenborderline]

Whoa. Very helpful.

I think that I need more tests to get at root cause of this, I had covid which is known to cause guillain barre which is known to cause all of this stuff... where are there longcovid clinics.

Any longcovid patients here ?

 

[frozenborderline]

Pretty sure my dynamic bai, not just bdi, and my grabb oakes were abnormal too but I cant be sure. So if you are my helper who is supposed to read this thread, reading this, please check.

Also not sure if I should put every single abnormal result either, or just ones I think relevant to me/cfs.

My vitamin d has been low often, and my tsh was over 4 at least once.

My electrolytes have been imbalanced, but not necessarily more than once.

I have hyperreflexia. Noted by a nurse practitioner in Nevada. (This is seen in cci /cervicomedullary syndrome)

On physical exam one Physical therapist and oone physiatrist (unsure difference) have "felt " instability both in ccj and at lower levels, although they both seemed to think it was possibly smaller amount instability than the surgeons have.

I'm pretty sure that I forgot to mention the abnormal tests that started it all off. A fever , clinical exam, bullseyerash, and positive western blot and elisa that led to a lyme diagnosis by my primary care physician in summer 2016.

 

[frozenborderline]

I sorta started it thinking to focus on labs but I think everything that is a formal test or noted by physicians seems relevant. Especially given the lack of abnormal results in the median me/cfs patient with the median doctor