Immunodeficiency/autoimmunity, eye issues, not sure how to proceed

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Hello!

I've been building up to this post for a while, so anyone who actually reads through it and manages to be able to give me feedback on any or some of my concerns, would be really helping.

I was dx'd with CCI early this year. I live in the South of France and feel like I'm not getting the help I need here, I may need to travel to Paris for pushing my leads/test results further. I have attached all of the recent tests I've done -- viral, neurotransmitter, metabolic, bacterial results and more -- in case anyone would be able to understand what's going on and point me the right way.

I think what I need the most right now is a plan of action. I'm extremely open to hearing general brainstorms because I'll use anything I can get. My most basic problems seem to not go away, and then some. Tangentially -- I am not covered by healthcare here yet, so what I have is financial support from family in order to proceed, and they are helping generously. What I'm coming to see, though, is that without a proper plan and without really competent doctors, I'm not getting where I'd like to be. This is why I feel like I must post here at all cost, PE is replete with excellent advice.

I want to get a big problem out of the way. I am dealing with vision issues which I do not think are floaters at this point. Macular degeneration / uveitis groups urged me to see a retinal specialist asap. I'm not sure if I am bringing this on with smoking (I am trying to quit) and if intracranial hypertension or oxidative stress are not making this worse. My central vision is disturbed with a blurry smear in both eyes. The smears float very quickly or most of the time into center view and cloud/fade the letters I am reading, etc.

I want to talk about the test results I've attached as well. I've spoken with @Learner1 not long ago and shared the results, and autoimmunity/immunodeficiency was brought up (low CD8 high IL2R). My EBV is up and down and neither I nor the doctors who see my tests know what to make of it. Some dismiss it entirely while others acknowledge the problem but it seems no initiative is taken at all to address it. The doctor I saw in Nice (France) who ran these latest tests said he preferred not to go down the route of antivirals et. al. At the same time, he was willing to say "We'll put you on probiotics, omegas, and GABA (vitamin supplement) and I hope you'll come back in three months time and tell me you're doing fine."

This is obviously not working for me. My gut is largely better than it ever has been in ten years, but I don't think anything else is really sorted or addressed. I wouldn't mind the dismissal of antivirals at the time being, except I feel that there are a host of tests which could get me closer to understanding potential autoimmunity/immunodeficiency, but I think I may just be living in the wrong area to further all this. Medicine here is not what it is in the U.S., and I ought to be keenly aware of that as I proceed.

My eyesight is a big issue so I think I'm going to need to tackle that ASAP. It's super distressing. I just feel like it's time I identified an immune/autoimmune process if there was one, and I just don't know how to proceed. Should I keep seeing a certain local doctor and get him to sign off on a Nutreval test? I was advised to run an amino acid panel, lipid panel, homocysteine, RBC magnesium, leucine, isoleucine, valine, lysine, tyrosine, and theanine. Do I get a doctor to sign off on all this and check for it with Nutreval? How quickly should I prioritize this over autoimmunity investigation?

There's Cell Trend in Germany. I just figure if I ran nutritional panels, that I could share them on here and get sound advice and correct with the appropriate nutrients. But if I looked at autoimmunity, I would have to see a competent doctor who could perhaps then help me look at medical options, allopathic treatment, or whatnot.

I'm sorry that this is long-winded. I received substantial financial help and I just figure that if I asked here first, someone might be able to help me set a plan of action and I wouldn't feel as alone as I already am figuring all this out. It gets really overwhelming... I mean, should I take a shot at a competent autoimmune doctor in Paris? How complete is the Cell Trend panel? Should I ask for a more complete panel from the doctor?

Should I just go all the way and see an ME/CFS doctor in Boston? I'd heard of a competent lady at Mass General Hospital. I just feel like I shouldn't be looking too far at this point, and just focus on Europe at the very least.

I don't even know if bringing up symptoms is necessary at this point. I tend to get exhausted, overwhelmed during the day, depend a little too much on stimulants. I can get anxious / antisocial easily but I've come a long way. Waking up in the morning is almost impossible for me, this is perhaps the oldest problem. I get PEM, I feel the need to recover often. My brain takes forever to start up in the morning, I get joint pains way too easily. I can go on.

I sincerely thank anyone who has actually read through all this and can come up with suggestions, also feel free to PM me. It's just a lot to handle on my own, and I'm thinking therapy would also help me get through it. Voilà. Good day to everyone, you are all incredible.

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MTpockets

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If your eyes are your main concern right now, I would start with that. Go see a specialist and get a good thorough exam. If he finds nothing functionally wrong with your eyes, then you can move on to it possibly being an immune problem. Don't try to lump all your symptoms in to CFS or CCI. You can have other things go wrong with your health that may have nothing to do with either. So I would check that first before making any other decisions. I'm sorry I can't help you with your test results, but I'm sure someone else will be along soon for that. Good luck!
 

Wishful

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My central vision is disturbed with a blurry smear in both eyes.
My first thought is some form of dry eye syndrome or other issue that is breaking the fluid film on the cornea. Do the smears go away when you blink a few times? I get that when I drive (air blowing from ducts). I agree with MTpockets about getting your eyes checked for non-ME related problems. Just because we have ME doesn't mean we can't get other health problems. :(

As for getting a more complete panel of tests, I feel that it's unlikely to help, since no one knows what the dysfunction is with ME. Tests might show up some abnormalities, likely ones that 'the doctors don't know what to make of', but maybe those are normal healthy levels for you, since we're all different. Also, abnormalities might be far downstream of the ME dysfunction, and treating those abnormalities in the logical way (eg. this drug or supplement for this abnormality) might treat a downstream symptom, but might also affect other aspects of ME in a detrimental fashion. I see it as a lot of time and effort spent on tests to get prescriptions that are probably not much more likely to help than trying various herbs and supplements at random. The two things that work reliably for me don't have a logical scientific basis; they were just accidental discoveries.

ME just doesn't seem to be something that a patient can get effective treatment for by throwing large amounts of money at the problem.

Getting people/governments to throw more money at researchers might help speed up finding a treatment/cure. Maybe an x-prize for discovering the cause and/or a treatment?
 

Moof

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I'm sorry you're struggling so much, @gm286. It's easy to feel utterly lost in the middle of all this.

I agree with everything @Wishful says. The eye problems may or may not be ME-related, but an ophthalmologist will be able to screen you for various conditions; the rest of it is more difficult until we know more about the basis of the disease. No doctor can test for something without knowing what it is.

In the meantime, it's a case of approaching it via symptomatic relief. There are some meds that might help with particularly troublesome symptoms, though, so it's worth exploring that.

CCI is also a challenge, as surgical treatment is massively risky. There aren't many surgeons who do it, and evidence about which approaches are most successful is therefore scant at best. I've read about people being helped by other treatment, such as manual traction and neck supports, but you still have to make sure the practitioner offering it really knows what they're doing. Necks are easy to damage and hard to mend.

I've had ME since 1976, so I know how bloody frustrating it is – but I've also learned that striving too hard for fixes just stresses you out, because the fixes don't exist. My honest advice would be to take a step back for a while and just focus on what you can realistically make progress with, e.g., investigating the eye symptoms. If you take the pressure off yourself, you might be able to focus on really helpful things like quitting smoking (which I know from experience is quite tough enough!)
 

Hip

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Macular degeneration / uveitis groups urged me to see a retinal specialist asap.
A local optician who tests people for myopia etc should be able to diagnose macular degeneration via a regular eye test. So that's a very easy and cheap test to get done.
 
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Hi, @gm286!

I read your post and looked at the attached test results.

I agree with everyone above that finding an excellent opthalmologist (not optician) is the best place to start. It's an easy, straight forward appointment, and perhaps the results of your eye exam and testing will inform what you decide to do next.

Among your test results, what caught my eye is your elevated CRP and IL2.

As I'm sure you already know, those are inflammatory markers. Such findings warrant a trip to a rheumatologist.

The expertise of rheumatologists varies wildly.

If I were you, I would spend some time looking for the most highly recommended rheumatologist in a metropolitan area. Or see if you can access an experienced rheumatologist at a medical teaching hospital/university.

I know you have a lot on your mind and much to think about. I wish you the very best!
 

Hip

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opthalmologist (not optician)
In the UK, "optician" is a broad and vague term which covers optometrists and ophthalmologists. When you go to get your eyes checked in order to be fitted up with some glasses, and to check your eye health, we usually call that "going to the optician".
 

pattismith

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Dear George,
I agree that seing an ophtalmo is an emergency. If you have papilloedema from intracranial hypertension the diagnosis must be done quickly!

By the way, you said you got CCI diagnosis this year, did you get it in Cannes or Nice?
 

vision blue

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My two cents qucikly:

Retinal specialist first, make sure they do an OCT with a good machine. This is regardless of whether it is or isn't connected to anything else. Ask retinal specialist to order a visual field test as well- better yet, get another doc to order, and have printout in hand when you show up for retinal specialist appt.

then when you have more time, get your adrenals checked - make sure ok Proably they are (because of the low NE , etc levels). but maybe before that

try the antibiotic that works well on SIBO (its a pretty safe one- no systemic absorption) and reassess how you are after that treatment (that may fix the indocin level and lots of syptoms and the sertotonin and dopamine etc levels.

and then repeat the crp or Sed rate and see if you still have inflammation

if yes, work on finding the source as next priority. (other immune derangements may work out if you find the source of the inflammation).

easy to get an order for a urinary AA test. can be infomrative but i'd go with the stuff in this order as above

your EBV test just looks like past infeciotn to me- like 99 percent of adults

wish someone would do this kind of advice based on the numbers for me- no one likes looking at my numbers :(

keep me posted on what happens if you do anything from above list.
 
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nandixon

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@gm286, The idea of seeing a retina specialist is a good one. As just one example, it might be something as simple as central serous retinopathy (also known as central serous chorioretinopathy) which is usually fairly easily reversible/treatable.
 

Wishful

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– but I've also learned that striving too hard for fixes just stresses you out, because the fixes don't exist.
I agree wholeheartedly with that. Also for trying to find the one true diagnostic panel that will have The Answer! Tests for ruling out other diseases can be worthwhile, but ME probably involves something that doesn't yet have a standard test for, or a statistical database for what is abnormal.

I found life much less stressful once I accepted that it was ME and that there wasn't anything the doctors could do about it yet. I'm hoping that one day I'll check here and see a vigorous discussion about a breakthrough in diagnosing or treating ME.
 
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My first thought is some form of dry eye syndrome or other issue that is breaking the fluid film on the cornea. Do the smears go away when you blink a few times?
Yes @Wishful the smears briefly go away. If I blink harder, they go away longer. They then return shortly after. I will search for a corneal specialist in addition to a retinal specialist in Paris; big thanks for the tip!

@pattismith I had traveled to London for the Upright MRI and results were sent for DX to Dr Gilete.

Re: papilledema, it had caught my attention as a condition at beginning of this year. I remember insisting that my local ophthalmologist check for any sign of what I was describing -- the most awkward part is I can simply no longer recall which tests he used (by name). Images include below -- I think a visual field test was done, and some kind of imaging was done but not sure if imaging for the optical nerve is in there.

I'm including testing/imaging for the right eye only... I don't think among these that an OCT-A angiography for the eye was done. I can't confirm if an actual fundus image was taken. Neither if the optical nerve was checked. I had a slit lamp test done. *Maybe* the optical nerve imaging was done. If fundus photography was actually performed, wouldn't they have provided me with the image?

Either way, @nandixon @Zebra @vision blue @Moof thank you so, very much for your input, I will take all this and think about it closely, it's food for thought, it's what I need the most for now. I will look at SIBO more closely, consider a really good rheumatologist, and try to push ahead overall. I'll update this thread if anything noteworthy comes up re: vision, autoimmunity, inflammation.

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Learner1

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your EBV test just looks like past infeciotn to me- like 99 percent of adults
None of those tests is a PCR, which tests for the DNA of the virus. EBV is notoriously tricky. Those results could be negative, but maybe not. Without the PCR, you wont know.

It also looks like your membranes aren't happy. What did the doctor say about that? Could relate to collagen problems and CCI. Also might reflect damage from peroxynitrites and whatever is causing the inflammation. And to your dry eye problem. There are lipid tests, tests for MMPs (which damage collagen) that might provide insight or you could try the fish oil and phospholipids (like NT Factor or phosphatidyl choline.)

The other tests could give you insoghts to what's going on.
I agree with MTpockets about getting your eyes checked for non-ME related problems. Just because we have ME doesn't mean we can't get other health problems. :(
Very true.
As for getting a more complete panel of tests, I feel that it's unlikely to help, since no one knows what the dysfunction is with ME. Tests might show up some abnormalities, likely ones that 'the doctors don't know what to make of', but maybe those are normal healthy levels for you, since we're all different. Also, abnormalities might be far downstream of the ME dysfunction, and treating those abnormalities in the logical way (eg. this drug or supplement for this abnormality) might treat a downstream symptom, but might also affect other aspects of ME in a detrimental fashion. I see it as a lot of time and effort spent on tests to get prescriptions that are probably not much more likely to help than trying various herbs and supplements at random. The two things that work reliably for me don't have a logical scientific basis; they were just accidental discoveries.

ME just doesn't seem to be something that a patient can get effective treatment for by throwing large amounts of money at the problem.
The latest this week is that we were all unique and personalizing treatment is the way to go.

Researchers have found all kinds of metabolomic abnormalities in ME/CFS patients. There do seem to be subsets and a variety of genes and environmental exposures causing us to be different, while we share many symptoms.

I have found that getting thorough testing and trying to understand and right the abnormalities found, in concert with thoroughly reading the recent ME/CFS research, has brought me to several treatments that have been extremely successful, and I know other patients who are doing this, too, and getting better, rather than hopefully waiting for researchers to find the magic bullet.
I found life much less stressful once I accepted that it was ME and that there wasn't anything the doctors could do about it yet.
I've found doctors who are brilliant and curious, who are willing to think outside the box, read the latest research, and try varuous treatments based on good hunches that have brought me from 40% function, sleeping 16 hours a day, in 2016, to 85% of function and leading a more normal life, around my treatment. It isn't perfect, and it has not bern easy, but its been much better than if I had done nothing.

Asking questions, getting tests, then trying to understand the results and come up with an action plan is a great way to proceed!
 
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@Learner1 if there were ways to get tested for MMPs and lipids and I could get it signed off by a doctor, and could order a kit to my area, I'm all ears. I'd just assume the treatment protocol would come after seeing and understanding the results. Is there a specific company which offers both MMP and lipid testing in Europe? I could conceivably run this by my doctor if there were options, I just need to be able to explain it correctly to him.

They won't do further tests in France for EBV outside of what I ordered -- unless I pay a hefty price (Dr said this to me) and perhaps see someone in Paris for it. So it's not the first thing on my priority list. Dr wasn't even very open to the idea of treating me with antivirals. To add another layer to this point: I would much rather get a SPECT scan first (how and where to do this, I'm not sure yet), ensure that the brain is indeed inflamed/damaged by some enteroviral or herpetic agent (if this were the case) and act accordingly.

Unfortunately my doctor said nothing at all about the stiff membranes. I'm thinking he's mostly going to be useful for helping me walk through testing, not exactly for treating or interpreting the results.

I will check my eyes first. As far as collagen goes, I will soon be supplementing with Hyaluronic Acid and Dimethylglycine (drew my own conclusions). Among other supplements, dr recommended omegas. Also, Zinc (on and off), Maitake, Vitamin C, and a host of other beneficial things.
 

Learner1

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I don't know how to order any but a few tests in Europe, unfortunately. These tests can be ordered through mainstream labs in the US. Have you had several immune sysyem tests run, like total I with subclasses, a CD57 panel, T and B cell diffetentisls or cytokines, which might indicate immunodeficiency, autoimmunity, or an infection?

Unfortunately, in the US, most of us take for granted we have to pay for tests. But, some of the tests I've paid for have gotten me $100,000 of treatment that's helped... I t pays to solve the ptoblem you have, ot trying to solve a problem you think you have be sure you just don't have good data.

I've attached some papers that discuss membranes.

And, just a thought, I hate to bring it up, but has anyone looked at the possibility of a glioblastoma?
 

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gbells

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GP visit then rheumatology and opthalmology consults. If you have lupus symptoms ANA is the first screening test. You shouldn't have to pay out of pocket for this. It's standard medicine. Use 50 sunscreen and a hat if the sun makes your symptoms worse. Don't smoke.
 
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And, just a thought, I hate to bring it up, but has anyone looked at the possibility of a glioblastoma?
Is there any reason why you would go as far as suggesting that? It sounds extreme. Also, thanks for the literature, will look. Will supplement with Alpha GPC as far as glycerolphospholipids go, I agree that it may be very important.
 
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