Temporary vision loss

The unwanted surprises of this illness seem to never end. Update: Blakeley has been addressing parasites by Brendas herbal recipe as well as Alinia over the full and new moons. She has worked up to the full dosage of herbs but is still having to take breaks during the week to catch up detoxing it all, since it makes her feel deathly sick. She has, however, within the past two weeks, passed many and variety of what appears to be worms. SO very much strange BMs.

The treatment affects her brain severely. She feels out of it and just lays there staring, especially the Alinia. She can’t take more than one day at a time of that.

Now to my question. For a week now, she has been experiencing vision loss in her left eye (which is her “good eye”). She has had constant double vision for two years now and closes her right eye to be able to see her phone and be able to read short things. So now the eye that has been allowing her to see for so long has started graying out. It will last maybe 10 seconds and she will have to close her eye and wait for it to pass. Very scary for her.

We had her optic nerve and retinas checked by the eye doctor who has been monitoring her case and thankfully, she saw no physical reason for this to be happening. Blakeley also sees a neuro-opthomologist, who has never found reasons for any of her vision problems except convergence insufficiency (basically at this point convergence impossibility since her two eyes do not work together at all). We have an appt to see her again in 2 weeks.

Anyone ever had or read research about any of these vision issues? The loss of vision is causing me great grief as her mother to even think that she could lose her vision due to this. I’m wondering if it could be from parasite treatment causing inflammation or something. Or what could be causing that eye to basically turn off.

Thanks. I know it is probably a shot in the dark to ask, but if anybody knows anything about this, it’s all of you here on this forum. Such a wealth of information here and so very little from the non-Lyme literate world of medicine.

Oh goodness, this must be terrifying. I have a retinal condition that has caused me some permanent vision loss, so I know how worrisome it is to have vision problems and not know why or whether they will clear up. A lot of people experience vision loss with neuro-inflammation, including overall healthy people who get migraines. I would bet that the die-off from the anti-parasitic treatment is just exacerbating the neurological inflammation that Blakeley is already dealing with. But that doesn't make it less scary when it happens! Do you feel like maybe it would be okay to back off the treatment for a few more days to see if things improve? Or do you worry that you might lose ground if you take more of a break?

Yikes!!! I am so sorry. That’s scary. Hopefully it’s from toxins. Is her doctor guiding her through this parasite treatment? I have never gone all in, because I am too scared. Parasite treatment can be very dangerous.

Klinghardt also says you should not do parasite treatment without taking care of heavy metals. This involves a number of supplements. I know zinc is one, but I don’t have the complete list.

On the positive side, glad to hear she’s expelling stuff in her stool. Better out than in, for sure.

Thank you for the concern, information, and experiences you shared. I looked back at my notes and see that the vision loss began the day after she took Alinia, which she only took one day. I hate the vision going out but hopefully it is just inflammation from die off. She does take binders as well as zinc, which do seem to limit the herxing. Vision stuff has been going for a week though.

Regarding a LLMD helping us through the parasite treatment, neither one blakeley sees was willing to talk about parasites being an issue and said we could possibly do a stool test at some point. Basically not interested. The LLMD in GA prescribed the Alinia about a year ago and we have talked with her about dosage and reactions. She changed her recommendation to just do one day at a time since it’s such a heavy hitter.

The naturopath we use is helping guide us through the parasite cleanse as she has had much experience treating patients for that. I don’t know that she comprehends the depth of involvement of the brain in this case though. She focuses more on gut it seems.

I am amazed that once the stuff started coming out, which took over a month into treatment, the amount and continuation of it is startling. Blakeley barely eats so idk, it’s like all this stuff was filling up her gut. (tmi, sorry).

I have another question then: how do the parasites in the brain get “expelled” when they die? 🤔 And would there be this great huge number of them in the brain? Curious stuff.

Denise, did they do special testing to look for spirochetes in the eye or just see them on a regular exam? Between the local eye doctor who checks optic nerve and nerves of eye as well to Neuro opthomologist to vision therapist and their eye doctor, I’m not sure who else to see BUT I will definitely check out the links you posted. Thank you.

You were left with some visual loss after treatment...has it affected your functioning independently in life?

No doctor yet has seen any nerve palsies or any other reason for her problems, which include all those you listed above. I have asked about more knowledgeable doctors for this cause and I’m told the Neuro opthomologist is the one who would know. I have looked at info from Padula Institute and shared that with the doctor at the vision therapist office. She said they are members of the same organization and do similar therapies. It’s so hard to know what else to do.

Thanks for the info

I didn’t know she saw an LLMD in GA. What are her initials?

I’m not sure where parasites outside the GI tract exit, which is one reason doing the whole parasite treatment thing scares me. I have heard of parasites coming out of people’s eyes, nose, ears, even skin. I saw things like that on that tv show, Monsters Inside Me. I think that was the name of it.

Oh my gosh! I hadn’t thought about the parasites exiting other places 🤮 I guess I thought they would just die and somehow be absorbed by the body/brain???
I wish I knew for sure!

Hi again Blakeleysmom,

I have a macular scar at the central part of my retina at the back of the eye so I lost my central vision over 30 years ago. Basically I am blind in my left eye and thank goodness my right eye is fine. The problem I have now are cataracts so within a year I will need to get cataract surgery so I will have to travel to use the best surgeon.

Anyway, my family eye doctor sent me to specialists and those specialists sent me to more specialists (this happened when I lived on Long Island). Then doctors from New York City came to see me at a specialist in Nassau County and they all examined me. I don't remember the names of all the doctors but there were at least 10. They used microscopes (and other diagnostics), put different dyes in my eyes, etc. I had extensive testing done. We were all afraid I was going to lose my sight in my right eye which thank goodness never happened.

I see everything out of my right eye so being blind in my left eye doesn't bother me.

You said that your daughter has been experiencing double vision for 2 years now. Again, I would take her to other well-known doctors and get more opinions. You have nothing to lose by getting more opinions from expert specialists.

As far as parasites/worms exiting her eye and other places I'm not sure I believe that. I have done many parasite cleanses (cloves, wormwood, and black walnut hull) which worked great as well as liver/gallbladder cleanses which I still do for preventative medicine. I know nothing about Alinia but I'm the type to take an herbal remedy over
prescription medication but that's me. I try to stay away from big pharma for personal reasons.

WBF, people have been doing parasite cleanses forever and I do not believe they are dangerous at all. I never watched Monsters Inside Me and I don't want to. I already had the monster inside of me so I lived it

I have a lot of respect for Dr. Hulda Clark and the products though I have used other products that contain the same ingredients:

https://drclarkstore.com/blog/why-cloves-wormwood-black-walnut-hull-are-the-best-herbs-to-kill-parasites/

More links:

https://www.reviewofoptometry.com/article/the-many-faces-of-ocular-toxoplasmosis

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3770869/

Ocular toxoplasmosis is a disease caused by the infection with Toxoplasma gondii through congenital or acquired routes. Once the parasite reaches the retina, it proliferates within host cells followed by rupture of the host cells and invasion into neighboring cells to make primary lesions. Sometimes the restricted parasite by the host immunity in the first scar is activated to infect another lesion nearby the scar. Blurred vision is the main complaint of ocular toxoplasmic patients and can be diagnosed by detection of antibodies or parasite DNA. Ocular toxoplasmosis needs therapy with several combinations of drugs to eliminate the parasite and accompanying inflammation; if not treated it sometimes leads to loss of vision. We describe here clinical features and currently available chemotherapy of ocular toxoplasmosis.

And another article by Dr. David Jernigan:

https://biologixcenter.com/parasites/parasites-could-be-the-real-reason-for-these-chronic-illness-symptoms/

Hope this helps,
Denise

Quick update:
Saw a neuro opthomologist today who confirms after much testing that Blakeley has zero swelling or inflammation of optic nerve, no nerve palsies, no inferior physical condition or markers for any disease that would cause the double vision or quick bursts or “vision loss” she’s experiencing.

Convergence insufficiency (where eyes do not team together to see things) is what we have thought was the issue; however, at today’s appt it was stated that Blakeley’s issue should be labeled complete convergence deficiency bc she cannot converge her eyes at all to the same target, hence the double vision. What causes that? Dr said that traumatic brain injury does it usually or some illnesses...she of course, in a subtle way dismissed the fact that it is Lyme that started it all or is causing it.
Supposedly the vision blanking out is the eye not seeing or suppressing the image in one eye, which vision therapy could be causing since she is working on getting the brain to get the eyes to work together.

Anyway, just wanted to pass along info in case anyone else comes along with this same problem.

When I was on heavy abx treatment I was having a lot of eye irritation that scared me as well. I too got it checked out and everything looked fine. Over time it went away so for me I think I probably wasn't detoxing well enough.

Just saw this! Thank you for the information. I will definitely look at it.

Blakeley had a horrible month of June. Really big setback, possibly due to herxing from trying to increase herbs, but symptoms had slowly began increasing so we were trying to do more treatment.

Began another round of Des bios series kits for Borrelia/Babesia and Bartonella. She did not have horrible reactions this go around (for the first time) and has been feeling much better. One of the members here had discussed with me about what the proper protocol is after completing the series kits and we have never done that. We plan to finish and then take the 1M and 10 M “maintenance “ kits to hopefully be able to hold the progress. We shall see. Blakeley does seem to react more positively to this treatment than any other we have tried. She is also still on low doses of herbs, trying to increase as we go along.

Vision is still the same or worse. We are working on convergence through therapy but not seeing much progress. Had to take a break in June.

Some symptoms are much better. Her main complaints now seem to be lesser things (to her) such as headaches, bone pain, nausea at times, etc whereas the symptoms she doesn’t typically have anymore are feeling flu like and just run over, body heaviness, POTS type stuff, feeling as if she can’t move, mainly the things that keep her in the bed.

EMDR unfortunately had to stop when she got bad in June. She had only done it twice. I informed the therapist that she couldn’t come bc she couldn’t get out of bed etc. When we returned for the first July appt, the therapist seemed to want to turn Blakeley over to a different person bc she said this ongoing illness isn’t her specialty. Of course, Blakeley was hurt bc she felt here we go again with a doctor saying she can’t help and wants her to start over w someone new. The therapist said she could still do the EMDR with her but Blakeley was so very frustrated with how the session went and the attitude of the therapist that she says she’s done with it and won’t go back. Soooo, right now she’s just working through stuff on her own again. Considering DNRS as an alternative although I know it’s a different mechanism of healing.

Thanks for checking in on us! We are extremely busy with our farm this time of year and are grateful that at least for now, Blakeley can be self sufficient at least here at home.