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HELP! I need vision-loss info and sources please!

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Posted 7/1/2013 10:55 PM (GMT 0)
Hi, My 8 year old has gone partly blind in his right eye. He has lost all peripheral vision below.  Exams show no damage to his eye structure. Results came in today for an MRI - nothing identified as a cause.  (He had the bullseye rashes, negative IgG and IgM, and many neuro symptoms.)

Any info at all will be a blessing. I haven't been as freaked out as this since before he was born. We see a third eye doc on Wed.

Posted 7/1/2013 11:45 PM (GMT 0)
Oh Mrs. Cat,

That is horrible. I am so sorry. If it makes you feel any better my vision got really blurry in one eye and I was scared I would go blind. Many folks on here responded saying that it is extremely rare for someone to go blind from lyme. In fact only one person responded that they knew someone who lost vision in one of their eyes but after treatment there vision was restored. Have faith! Has he started treatment yet with an LLMD?

~beth

I hear Stephania root is specific for helping the eyes. You can look it up on buhners site.
Posted 7/2/2013 5:47 AM (GMT 0)
Thanks Opugirl, I really need the positive outlook. I started sobbing after I got done with the call center. Tonight my little boy also finally cried about all the time at doctors. Usually he seems like such a big boy, but tonight he was just wiped out. Small, and fragile. No answers for his vision. I'll tell him there's folks who have been there before.

Opthamologist #2 (also saw an optometrist) next, followed by return to ID, then Neuro#2. Last links through ins. I feel stupid. I kept/keep hoping eviidence and logic will prevail. Duh.

I am getting my ducks in a row though.
Posted 7/2/2013 5:49 AM (GMT 0)
I just thoght I'd clarify for smart alecs like me, we'll be seeing an additional eye doc, not a doc who treats third eyes! There, I still have some sense of humor.
Posted 7/2/2013 6:40 AM (GMT 0)

Cat,

I'm so sorry they don't seem to be able to find what's going on with your boy's eyes...

take care,

Marie

Posted 7/2/2013 6:54 AM (GMT 0)
I have very bad eyes myself, -10 myopia. Eye dr says that my eyes are in a surprisingly good state, considering the -10?? It should have stabelized by now, at 34, but it hasn't... I have very blurred vision, sometimes one eye can't see, but that's just for a very brief moment, I have problems focussing, floaters, pain, the whole thing...
I've been searching on the internet, but haven't found anything concrete yet... I will let you know if I stumble onto something.
This has preoccupied me very much...
Posted 7/2/2013 12:52 PM (GMT 0)
LOL! Cal Cat, How'd you know I'd think that about the third eye doc? So sorry! I know that this is very serious, but still.....I just had to giggle over that!

Please be sure that you don't allow anyoneto give your son steroids!!! Steroids will lower his immune system function and will allow the infections to go completely unchecked in his little body!!!!

I've found a couple of things:
"Inflammation of the optic nerve (optic neuritis) also can occur, which results in visual loss. Loss of vision can result from inflammation in the brain as well."
chicago.medicine.uic.edu/cms/One.aspx?pageId=15654493

www.livestrong.com/article/133058-lyme-eye-symptoms/

and I would suggest that you go through all the info available here as well: www.lymeneteurope.org/forum/viewtopic.php?f=5&t=246&start=10

I do hope that you can find the help you need - but I would highly suggest that you get your boy in to see a LLMD quickly before this disease progresses any further.
Posted 7/2/2013 2:40 PM (GMT 0)
Healing Lyme Disease Coinfections. S. Buhner:

"The newer research that has emerged over the past decade has found that bartonella infections are often accompanied by eye involvement along a broad range. The most common symptoms are foreign body sensation, redness serous discharge, increased tear production, blurred vision, photophobia, granulomatous conjunctivitis, neuroretinitis, subretinal lesions, retinitis, intermediate uveitis, inflammatory masses, angiomatous lesions, retinal serous detachment, choroiditis, retinal vasculitis orbital abscess, vitritis, vitreous and diffuse retinal hemorrhages, sudden vision loss, and optic neuritis. Neuroretinitis, multifocal and focal retinitis, branch retinal artery and vein occlusions, and angiomatous lesions are the most common after conjunctivitis. Ulceration of the conjunctival epithelium is common. 2/3 of people who present with neuroretinitis have been found to be positive for bartonella infection. .....Although neuroretinitis has been recognized as a distinct clinical entity for more than 120 years, it wasn't until the 1990's that the syndrome was definitively linked to bartonella infection. Neuroretinitis may occur in one or both eyes and is primarily characterized by blurred vision but may progress to loss of light perception, optic disk edema, serous retinal detachment, and macular star. Loss of vision is usually painless and abrupt and unilateral. ....It may take months are vision to return to normal and even then there may be residual problems...bartonella may stimulate unrestrained blood vessel growth, and when this occurs in the eye the result is similar to certain forms of macular degeneration...."

"Mycoplasma - ocular infection, most often in children: Conjunctivitis, anterior uveitis, optic neuropathy, retinitis, retinal hemorrhages, iritis, oocular mayasthenia gravis, and optic disk swelling. ..."

If he has had bullseye rashes, he has lyme (and probably at least one of the co-infections).  I would start treatment for lyme/coinfections as soon as you can.  All the eye specialists in the world will not help this.  You may get some kind of a diagnosis, but they will probably not treat except with some type of immune modulator/anti-inflammatory (ie steroid treatment).  The only real way to stop the progession of disease is to decrease his levels of infection.

I know you are paniced about the eye involvement, but this should not interfere or take precidence over finding treatment for his infection(s).   

Posted 7/3/2013 9:00 AM (GMT 0)
Thank-you all. A proper response addressing each thing will come soon. I couldn't stay on the site for more than a second before I got dumped, about 10 x in a row earlier. So instead I used most of a brand new ink cartridge printing things to take with me to the docs.

Mon is ID round 2, Wed is neuro #2. I feel very stupid for waiting and waiting. These appts will either spark treatment or some serious talks with the lawyer. If I get more BS then kiddo'll be on anti inflamatory+ bactericidal herbals until he is in an LLMD's care.

The ped. didn't actually have anymore alternate diagnoses.

Thanks again everyone. I'll print all the info you have lead me to. It's 2 am. Must slee.................................................................p
Posted 7/3/2013 9:09 AM (GMT 0)
sleep tight! Keep us posted!

Posted 7/4/2013 12:25 PM (GMT 0)
Yes, please!! Get some sleep!! You absolutely must take care of you in order to be there for your son!!

Then you can let us all know what's happening. :-)
Posted 7/4/2013 3:05 PM (GMT 0)
You will exhaust yourself trying to make believers out of ID doctors. They will not open up to your information/suggestions. Please use your energy finding proper treatment (either abx or natural) for your son. He is too important for you to be distracted with other things.  I would also suggest you save the money you are about to spend on lawyers, for your son's treatment.  It isn't exactly cheap.  

You will get more rejection, I can almost guarantee it. You can't force these doctors to treat your son.  There are very few doctors willing to put their practices and certification on the line by bucking the CDC guidelines for antibiotic treatment.  We are lucky to have any.  Please don't let the ID doctor/ neurologist start thinking about Munchausen by proxy and getting CPS involved.

I know it's disappointing that we can't make the CDC/IDSA understand our point of view, but I would save the activism for later, when you have seen improvement with treatment. That will bolster your arguments as well.
Posted 7/7/2013 6:07 AM (GMT 0)

Hi, I'm back and conscious. Some excellent news -

My son got his peripheral vision back over the weekend. I don't know how, but the '3rd eye doc' was testing him and I could see that my son's range was much better! YAY YAY YAY! (The flip side being the doc says it is impossible for the problem to have existed since there's no damage to the eye and the MRI was negative.)

So, he has his vision but there is NO explanation for nearly six weeks of partial blindness. The doc did object when I asked if he was saying my son lied about it, but it still was "impossible". No idea that maybe the radiologist missed something, or that the issue doesn't show? Biochemical signaling?

The only changes there were, were dietary. I started him back up on omega 3s for a week after running out for a while, added a multi vitamin we'd been out of, and gave him lots of cherries. Doesn't seem like a likely cause, but who knows. No one at the doctors'.

 You know, the Munchausen thing is pretty fn scary isn't it?  If I don't advocate for my son, or if I  refuse to get him treatment when he's sick then I would be being neglectful, but push too hard and then they can make a darn sticky diagnosis and splat - tarred and feathered in one quick claim. (No proof neccessary, no false positives!)

The money problem means I'll have to rely on certain friendly resources for a lawyer's aid. I don't have the means for a battle, even though there's such clear evidence. I'm really only trying to get the basic CDC minimum of 21 days abx at this point - to get him started. He's never had a full prescription. I'm not claiming chronic Lyme, I'm claiming untreated Lyme. Step one.

I know they won't change their minds - they'd lose face and admit to error. One doc recently was surprised when I suggested she looked up Columbia U's site to see a listing of some studies which show neg tests do not mean no Bb. Her bro in law teaches there. Hmm. Maybe one little seed of curriosity will grow and push open a shutter in her mind. And I didn't suggest Quacks R Us.

I get partly annoyed, and partly satisfied when someone poohpoohs some info I have and I can tell them "Oh, that's from the CDC" or "That's from the state Health Department" or some other source which they can't belittle without weakening their own point.

California has a law protecting doctors and patients allowing me to go to an LLMD and get treatment but it doesn't pay for it! The payment help I've seen, mostly thanks to you, Traveler  :) , want me to show I don't have ins. to cover the Lyme. I think I have just about proved that by now.

Another Q - what's the basic antibiotic for Bartonella? Is there one that does Bart and Bor.? Amoxi is what he was given, for only 10 days; doxy is a problem for tooth staining til 8 yrs old. Some include 8 some say until 8. Is there a decent test for Bart? People here have shown me reasons to think it may be a prob. too.

I don't want to use my boy's name because I want to give him some privacy but it feels weird always saying 'my son' and not his name! 

He hated the eye drops to dialate his eyes, they hurt a lot. He had a complete melt down, hide in the corner when they tried to put in two more. I tried to hold him still and it turned into a 3 ring circus. It was traumatic for him.

Finally it was decided he'd be ok with just the first drop. But, at the end the doc said if you have any more trouble then come back, maybe we'll need more eye drops. Sound like a c..py thing to say? Let's make sure he doesn't tell me if there's a problem!

OK, I've been at this too long tonight. I have a few other messages to look at before I go to sleep again. Goodnight, and thank-you again for everything.

Posted 7/7/2013 12:54 PM (GMT 0)
That is truly wonderful news turn

How is he coping emotionally?

The poor little mite must have been terrified.

Tickled
Posted 7/7/2013 3:57 PM (GMT 0)
I agree with Tickled!! The poor boy must have been terrified! After losing part of his sight then to have to listen to someone say the things that doc did! They can sure be insensitive sometimes!!

You could use your son's initials if you wanted - it's not like we would be able - or have a desire to - look him up from his initials! Although I do understand you wishing to keep some privacy for him.

I'm very glad that some of my info proved to be useful for you, Calcat!!

Please, please understand that it's not likely that 21 days of abx - no matter how strong they are or which one is used - will get rid of the infection(s) though! You will have to follow up with something else if you choose to go this route, as the infection(s) will have only been beat down some - provided they will actually give you the right strength of abx.
Posted 7/7/2013 7:23 PM (GMT 0)
So happy for the both of you! Cherries and omega 3s are great anti-inflammatories, so perhaps that did the trick. That is the rational for a gf/cf diet as well. It decreases inflammation.

Buhner's suggestion that lyme and the coinfection bacteria cause their specific cytokine cascades (read inflammation) to destroy tissue and allow increased nutrient availibity is very interesting. He suggests that each bacteria initiates it's own cascade to increase parasitism. If inflammation can be reduced, nutrients become relatively less available to the bacteria and can actually decrease infection load.

Inflammation caused by the infections are a major cause of symptoms. We find that Buhner's suggestion of Japanese knotweed, as a decoction made with the powdered herb, is a superb anti-inflammatory. It has handled my body aches in a way tylenol is unable to.

Traveler is right. 21 days of abx are a drop in the bucket as to what will be required for these infections. Our daughter was on abx for 2 years before we could discontinue without relapse. There are alternative options out there for treating, but if you are going the abx route, you will need more than 3 weeks.
Posted 7/8/2013 5:44 AM (GMT 0)

Hello,

Yes, I know you are all right about the duration of the antibiotics. It is my hope to at least get the ball rolling.  I looked for knotweed and olive leaf last week at a local supplement shop, but they're more geared to weightlifting. I did get good probiotics. There are other places nearby so I'll look there - more range.

As for his feelings, he was very distressed, and keeping it inside most of the time. He had a couple of occassions when he let it out and all I could do was hold him, and reassure him that I'd keep working on an answer. He's also fed up with all the doctor visits. Me too. (Especially the ones testing for things his symptoms only match superficially.)

I don't think he had completely realized his vision was returning - he just could see more during the follow up exam. He had been scanning all around most of the time and that took care of distance and middle ground pretty well.  I think he just adapted by moving his eyes down to see down. He did say it was harder to play ball games. And he was bumping his legs a lot.

As far as natural anti-inflamatory action - he ate a LOT of cherries! (The little weasel swiped mine too! Possibly a very good thing!)(I love weasels, no insult there.) I wondered if there might be something to the dietary changes. It does sound possible now.

So, why will my computer print 4 of 5 pages from the CDC reportable diseases standards, but not page 3 which actually says Erythema Migrans without labs, and without known exposure counts as a probable case? Cue the creepy music.

I have one of my biggest jobs of the year this weekend and I am trying to be completely prepared to pull it off without the help I usually have.

 I am juggling and I want back all the time I could have saved if they'd just treated him when he got the bull's eyes! If it goes well I can heal my battered credit card and pay for life this month! Perhaps make progress? My fingers are crossed and I'm backing that up with lots of hard work.

about using his initials, that would work. It's funny, I don't care about telling the people I have talked to on here, it's just that same thing with not giving LLMD info here - it leaves open room for harassment if someone doesn't believe the treatment choices I make are appropriate.

And I'm not talking salt... ;)

Posted 7/8/2013 6:38 PM (GMT 0)
No problem, Cal cat -we sure don't mind and we really do understand about protecting your child! We don't want him to be harassed either.

Can you get your son to take turmeric in pills? Even the stuff that Walmart sells could help with inflammation. I used to always have a 'script for anti-inflammatories until I started using turmeric. It did so well that I have only used turmeric for the last 2 years to combat my inflammation - especially in my hands and feet where they arthritis is getting a bit more serious now.

Congrats on possibly getting the money situation where you want it again!! turn Woo Hoo!! We all know how expensive all of this can be!

Keep up the good work, Calcat - but don't forget to take care of you too!!! :-)
Posted 7/8/2013 7:15 PM (GMT 0)
very relieved to hear it's going better!!!!!
Posted 7/9/2013 9:40 PM (GMT 0)

I'm in that touchy zone where slowing down for me time makes the next moment more hellish because the schedule is tight. I've promised myself next week will have some breathing room.

The turmeric idea really appeals to me. I think I saw turmeric listed on someone's profile? which must have gotten in my head, because the other day I saw some at a great international market and thought "I should get that" so I have a very large bag full.

 Now I'll have to figure out a delivery system. I can buy capsules to fill I'm sure, but I may also do a lot of cooking with it. Indian food anyone? Hey Traveler, any idea how much for a kid about 60 lbs? (dosage, not current market value...;) I do love to use things that have been widely used for thousands of years, it's reassuring.

Poor kid had a headache again this morning. He never had headaches before the rash. He said his vision was blurry around the edges. He called it a migraine and he was motion sensitive and light sensitive but it went away fairly quickly at summer school. When I heard him talk about his vision I freaked out inside but kept it cool on the outside.

Ohhhhhhhhhmmmmm.

Posted 7/9/2013 9:52 PM (GMT 0)
Ohhhhhhhhhmmmmmmmm indeed!! You're doing well, Calcat!! Hang in there and be sure to schedule in some of that 'me time' you're talking about asap!

I would think that with the great communication that you and your son have already developed that you can go by what he says. Start off with 500 mgs twice a day and see if that helps, if not up the dose by 500 mgs.

At -ehem - well over 100 lbs (around 130) I take 1500 mgs three times a day, for a total of 4500 mgs. each day to control my inflammation. Each of us is different though. You may need to add in ground ginger root (I put this into capsules also) to help the turmeric be more effective.

Many of us here use turmeric for inflammation/pain relielf.
Posted 7/12/2013 6:20 AM (GMT 0)

Thank you, as always Traveler turn . I have tons of work to do tonight, through Monday, so I'll save the longer post til next week. I looked up antiinflamatory foods on line and discovered we had boosted some 6 different good list foods that week!

Hemp seed, blue berries, cherries, flax/omega 3, olive oil, and sweet potato! Mother nature is good to us. I'll have to figure out how to weigh/measure the turmeric.

Anyone have experience filling capsules?

Posted 7/12/2013 12:32 PM (GMT 0)
turn LOL! ME!! smilewinkgrin I've been doing that for the last 3 years! What do you wish to know about it?
Posted 7/18/2013 11:02 PM (GMT 0)

Hiya Traveler, sorry about the long delay - away for work and really busy to boot. What I need to know is ... EVERYTHING!

Like, how to measure, how to fill without spill, should I split up his dosage? Does an adequate amount fit in just a couple caps or will he need to take a handful? I'd love to minimise the # of things he has to take - for psychological reasons - but real health is the main goal here.

I just hate handing him a mountain of meds and having him feel like pills are a normal part of life. Yuck. I usually avoid even OTC NSAIDS unless things are pretty extreme. I've been calling out the reasons for what he takes for the most part.

Digestive enzymes, omega 3, multivitamins, and Zyrtec plus his new amoxi prescription. It's already too much to see but probably not really enough to cure.

I hope all is well or at least wellish? for you!

Posted 7/19/2013 1:05 PM (GMT 0)
Well, filling empty capsules myself has saved me a boat load of money, I know that! I fill them with single herbs like ginger root or turmeric that I buy in bulk from the health food store, but I also fill them with herbal mixes that my practitioner has me taking, like my intestinal cramp herbs. I can only drink so many medicinal teas in one sitting!!! :-)

Of course you need to find a source for whatever you are going to fill the caps with. Be sure that you are getting good quality herbs.

I use what is called a 'Cap-em-quik' capsule filling system. Here is a picture of one:
www.amazon.com/Cap-M-Quik-Tamper-Capsule-Filling-Machine/dp/B000UYA272

I use size "O" capsules for all of my pills - I may have to take more, but the size is easiest for me to swallow:
www.capsuledepot.com/capsule-size-information/

You will also need a piece of paper (like legal sized paper for the printer) to put underneath of the cap-em-quik. I've never been able to not spill at least a little bit over the edges!!

I also use an old credit card to spread out the powdered herb. Then use the tamper (or an old pen that slides down into the caps) to tamp down the herbs just a bit and add more until the caps are full. Then put the tops on and pull the now full capsules out and store them in an air tight and light proof container! You don't want air or light to get to the herbs - it will deteriorate the quality of the herbs.

Any other questions about this, please don't hesitate to ask!! I'm sure I'm not the only one doing this (or maybe I'm the only one crazy enough to keep doing this????), but I'll be happy to answer any question I can!

Thank you for asking about me!! turn I'm still doing very well as far as the tick-borne infections that I had!! I too have been crazy busy with all things in life! Even with the stress of entering menopause, no signs of the infections returning!!!!! WOO HOO!!! turn Happy dance!!!! smilewinkgrin
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