posted
Flagyl has been doing some strange things to hubby.
When he was a teen, he was diagnosed with scotopic sensitivity syndrome.
He had trouble reading bc letters would move, his focal length was at one letter (instead of the 4 letter norm) , and he saw shapes and colors swirling around on any black surface.
They gave him purple lenses to wear, and it helped.
By the time he was a senior in high school, he "grew out of it"
ANYHOW currently he is taking flagyl, and these same visual distortion issues are back!!
To us, this seems like evidence that he was actually infected even as a teenager.
Has anyone else had any experience with this "SSS" diagnosis in a child, or with similar visual distortions?
-------------------- IgM ++41, IND 31, 34, 39, 83-93 IgG IND 41
"To the world you may be one person, but to one person you may be the world." - unknown Posts: 72 | From NC | Registered: Sep 2011
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nefferdun
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I have never had anything like that until this morning!! I recently started ivermectin and minocycline to hit FL1953. I read hallucinations can be part of the herx. When I got up this morning I saw "smoke" lifting in front of my eyes and things jerk slightly. I looked at the early morning sun and saw spots of colors afterwards. It is gone now.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
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posted
- Visual distortions can go along with lyme, for certain.
My vision is like being in a "fun house" at a carnival - but it's not fun at all.
There was an eye doctor who presented at that last ILADS conference, all about this.
More detail at the end of the second link set. The first, while seeming about ears, will also show how the inner ear disorders often caused by lyme can affect vision. Nystagmus is the most common but it goes beyond that.
And it's not just the inner ear. The perception parts of the brain can be damaged by lyme. There are things that can help while treatment addresses the cause.
Topic: VESTIBULAR REBAB Therapy, Supposed to be so Brutal?
=================================
Avoid all fluorescent lights, when possible. I even have regular lamps (regular bulbs) in my kitchen. -
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Keebler
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- VISIONAL DYSFUNCTION: Notes from video stream on 12-17-11. His use of slides helped my note taking, even if I can't further explain it - so see additional links.
================================================
He is NOT a LLMD (in that he does not treat lyme, per se), however he is lyme literate in his understanding of how tick-borne disease (TBD) can affect vision, balance and the brain.
His presentation at the ILADS conference will help many lyme patients, no doubt.
CFIDS Journal Fall 2001 Visual Dysfunction in CFS By William V. Padula, O.D., FAAO, FNOR yoked-prism glasses
Do a Google search for: �yoked-prism glasses�
His office may know of lyme-literate doctors in your area. While there are others who may not be lyme literate who work with the yoked-prism glasses, it would be best to find one who gets the whole picture.
I have no idea if any insurances cover this. However, I think Rotary clubs might be an organization that would consider a grant as they often support vision projects. -
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Keebler
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posted
- I assume those "purple lenses" were they IRLEN lenses?
Keebler
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posted
- TODAY: MAGNESIUM -- & GINGER TEA (even if you have to scrounge from your spice cabinet) might help calm things down a bit. It can be stimulating, though, so not too late in the day.
Resting at a 30 degree incline with head higher but raise whole torso so as not to crink the neck. That's the best position for the inner ear.
Since "currently he is taking flagyl, and these same visual distortion issues are back!!" you write.
I think a huge part of the problem is the fact that flagyl is OTOTOXIC
and, coupled with the usual high TOXICITY LOAD, his vestibular system is kaput - flagyl sure did that for me.
LIVER & KIDNEY Support are key but so is
MAGNESIUM, FISH OIL and ANTIOXIDANTS
His LLMD might better address a more detailed HERX / LIVER SUPPORT PLAN.
Any ototoxic (and there are so many), needs to be considered too, as they all really affect the inner ear / vestibular system - and that affects balance.
Zithromax (azithromycin), Minocin, and sometime Biaxin are the ones that can most troubling to those with vestibular conditions.
I could not tolerate flagyl at all and my vision was just "floating" in so many directions. My ears really messed up my eyes with flagyl.
I tried a few different times, over time and always the same horrible reaction that took days to lessen even after stopping it.
Tindamax might be a bit better tolerated. I could not do that, either.
Support methods might help and, surely with any drug required that is ototoxic, serious support measures MUST be in place but, sometimes, that is not enough and the Rx might need to be changed.
I suggest, instead of flagyl to address the cyst form, ask the LLMD about using
GSE - grapefruit seed extract
Systemic Enzymes such as WOBENZYME
they have some effect against biofilm, not sure exactly how else they might affect the cyst form of borrelia, though.
If his LLMD does not know other methods, perhaps a LL ND (naturopathic doctor) could help. Must be ILADS "educated", though. Not all NDs are lyme literate enough. -
[ 04-08-2012, 04:16 PM: Message edited by: Keebler ]
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posted
Sorry your hubby is going through with this. When I first got sick I had what I told doctors were `hoppy eyes`- like they had a life of their own -reading was impossible, still is a struggle.
Posts: 29 | From dreamland.. | Registered: Apr 2012
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Keebler
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- dsrtldy,
I love the term "hoppy eyes" - if you want to learn more about that, just search "Nystagmus"
It's actually very common with lyme (at least partly from toxicity).
I've had whole paragraphs seemingly just be jolted off the page. I told few people this, though, and wondered if I was seriously loosing it.
Little did I know my stressed liver and my tender ears could do this.
Magnesium is the best helper but all aspects of treatment & care need to be considered. -
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posted
I spent years going to Dr. Padula, and he has indeed helped many people with traumatic brain injury: there are many grateful people who adore him and know their lives would not be the same without him.
However, re. my Lyme-related issues, all those years of going & spending money did not do a thing for me. So, as with all things, use your own judgement.
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Keebler
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- ESG,
thanks so much for that feedback. The impression I got from that lyme presentation was that this vision therapy would be in addition to treatment protocol with a LLMD to address lyme & co.
Are you saying that, even with targeted treatment & nutritional support for lyme & co., the vision therapy / �yoked-prism glasses� did not help in the healing process?
I guess I was hoping that it might relive some of the stress so the body had a better chance.
I never interpreted that the vision treatment would actually address infection, but to help as a support during the process.
It's important to hear from those who have been through this as I, too, have spent all my money on so many things that were of marginal or no help before finding those things that matter most. -
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posted
It is interesting, but hubby does not actually get dizzy or have troubles walking with all this. So im not sure it is ototoxicity contributing.
I think it is probably the brain itself, the part that processes vision, that is having troubles.
But again, im just guessing.
Another thing ive wondered is, could his body be getting rid of some long stored toxins? He is having "acid flashbacks" since he started using a lot of chlorella and cilantro for binding toxins.
Maybe his body never completely got rid of the acid he did in college, and now it is getting rid of it?
-------------------- IgM ++41, IND 31, 34, 39, 83-93 IgG IND 41
"To the world you may be one person, but to one person you may be the world." - unknown Posts: 72 | From NC | Registered: Sep 2011
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Keebler
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posted
- The ears are important in processing vision. Very much so. The brain, too. Sometimes, they work together but the ears can very much affect visual processing even if there is no dizziness.
The effect the inner ear has on ALL that we do is amazing. The inner ear affects our ability to form and process speech, our thinking, etc.
The vestibular system is the FIRST system in the body to warn us of toxicity. The very FIRST. It's naturally on "red alert" all through lyme and lyme treatment.
Can't say about "old acid" being released but it seems possible. Someone else will have to answer that, though.
Whatever is going on, I can guarantee the liver & kidneys are working overtime. They need tremendous kindness & support. That part of the plan might need some adjusting.
Hope this all goes better soon. -
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Keebler
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- It's uncanny how nearly every one of these symptoms are also lyme symptoms. Lots of cross-over.
It's amazing just how much the vestibular system does for us.
When it's off kilter, we have to be very understanding of ourselves, change some stressors as best we can, give it time and support - while the infections are being addressed.
-----------------------------
This link is new with some changes as VEDA just revised their site: -----
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links . . . . -
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posted
maybe his prisms helped with my walking - but often I really was not sure. I was just so desperate to believe!
After a while I felt he was taking advantage of my confusion & suffering, especially when he had just built his fancy new center. I was not getting explanations, just requests to come more often & take more tests. I stopped going & did not notice any difference after I stopped.
I am not saying he hasn't helped people - he has.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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Keebler
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- ESG,
Thanks so much for your honest reply. As I have major sensory stuff, I thought maybe those kinds of glasses would help me.
But I have no way to get get any doctor (and sure that anyone here trained by his method might know his method but likely not how lyme affects my brain & eyes) . . . I can't be IN any waiting room, etc. . . . and doubt medicare would cover the visit or help with the special glasses since even basic eye glasses are not covered at all.
Still, if it might be the thing that could help my body not be so exhausted or unable to take a walk, I might try to figure out how to make that work and set about trying to move a few mountains (like that's possible).
I know others may have different experiences with any doctor or treatment / adjunct treatment, and I'm glad you did notice that he has helps others -- yet your experience helps me put that dream into perspective if I pursue this any further. -
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