ARRON

[kjelltp]

DR Nicolson,

Do you have any experience with treatments for autoimmune related retinopathy (no cause known, no clinical problems can be seen).     I've tested positive for this (no Dx however)...symptoms for many years, currently working a lot of alternative methods (diets, supplements)..slow positive results, however no improvement in visual symptoms.   Seems this disorder is extremely rare (not CAR related.)  and little information to find.  Normal treatments seem uneffective (not that I've tried or wanted to go this path...) .  Not many cases out there, and most case notes are not public.    Any advice appreciated.
KTP

[Garth L Nicolson, PhD]

The patients received differing treatments depending on their diagnosis and the information gathered from clinical testing.  Most had chronic infections that required long-term antibiotics plus nutraceutical supplement support.

The Institute for Molecular Medicine is a nonprofit research organization.  It is not a clinic or practice, and it cannot see patients outside of approved clinical trials.

We provide patients and physicians with information on various medical conditions.

[Garth L Nicolson, PhD]

Interesting.  If you look at the Signs/Symptoms survey on our website, www.immed.org, you will see that many of the problems you mentioned are listed.  Most of the patients that these multiple signs and symptoms had chronic infections.

[Garth L Nicolson, PhD]

Retinopathy without any other symptoms is rare.  Most retinopathy is associated with diabetes, arteriosclerosis, hypertension, alcoholism, and more than 40 other diseases.  It can also be associated with chronic infections, but there are usually other signs and symptoms that go along with this.

Assuming that this is not due to a genetic defect, I would take a look at possible viral and bacterial infections, but again, other symptoms should also be present along with the neuropathy if infections are involved.  If infections are involved, then this would be a quite different route of treatment than you have tried.

[Garth L Nicolson, PhD]

There is a list of tests under Clinical Testing on our website, www.immed.org

This is where I would start.

[kjelltp]

Thanks for your reply, ill elaborate a bit on my case:

Initially no other symptoms.  However, life long otitis media (absent from puberty, resurfaced later in life)..  Had sphenoid cavity filled (endoscopically removed 2 years ago, benign matter).    Started to have weird "food poisioning" symptoms a few years back (most likely leaky gut), muscle spasm when tired, acid reflux, headaches, dizziness, fatigue to name a few.   Visual symptoms, extreme light sensitivty, nyctalopia, dim vision (poor light perception...keeps worsening, more so from exposure), phosphenes, floaters, starbursts, halos..  Visual aquity not affected.      A lot of the systemic issues are gone/improved from dietary and supplements (also taking LDN).    I doubt genetic defect, but can't say for sure.  Visual symptoms started around age 26.   Not getting any useful help from the medical system here ..

[kjelltp]

Dr,

Thanks for your replies.  Do you have any suggestions to something I should look into further?  After 2 years of searching I've kinda of run into a dead end.

Thanks again,

KTP.

[kjelltp]

Dr,

What kind of treatments did these patience receive? Long term antibiotics?

The problem is, I don't know what to look for at this point.  I've looked at your website before, and found lots of good info.   Do you take patients from out of country?