I have been trying to find the info. on this
or what might be causing it on my own for a
few days now. But have not done to well, hope
someone can help.

Things have going about even keel from since my last post, a good day in the middle of
lots of bad days, about the way it shoud be.
With things seeming to get a little better
as treatment goes on.

About a week ago Vic`s eyes started to give her pain more then befor. She has alwise
( since being infected ) had pain in and around her eyes. This is what we have now.

1. Her eye lids will start to flutter

2. Her eye balls will twitch @ roll

3. It feels like her eye muscels are going
to snap like a rubber band

4. There is sharp pain behind her eyes and
in her temples.

5. There is alwise a bad headache, and the
swelling in her scalp is more then norm.

6. Her body will sway back & forth slighty.

To refresh;
tested pos. LD. WB
seeing LLMD in MI.

Taking:

Mino. 100 mg. 2x/ day
Probotics- acidophilus, enzyme digestant

cal. Mg & zinc with copper
vit E 400 IU
B-100 complex
CO-Q 10
anexsia for pain , no help
elavil 20mg. 2x/day
trazodone for sleep & restless leg @ bed time
propranolol 5mg for headaches

About 1/2 gal./ day of tincups detox tea,
without pau d`arco tea. Could not find tea
bags.

only thing new is PAU D`ARCO whole herb 500
mg. 2x/day

I tried to find the reason on my owen came up
blank, please help. I am worried.

Thanks , Steve

Don't know for sure, but here are a couple of thoughts.

Vic could be going through a round of herxing. Even though it goes back and forth all the time, there are also longer cycles. The classic cycle is every 4 weeks, though not everyone gets them that regularly.

Vic could be experiencing uveitis or iritis, infection or inflammation of the eyes. Barb Peck experienced a lot of that, and if you do a search under her username, bpeck, or under iritis or uveitis, you will find some good information.

Trevor Marshall claims that exposure of the eyes to light can increase the hormone 1,25-D very quickly, causing neurological symptoms. I don't know if this is true, but have been experimenting with protecting my eyes from sunlight.

I feel this is a pretty risk free experiment. So far, I've found myself becoming very photophobic, the more I protect myself from the sun. I also am noticing sun exposure brings on my headaches, something I was never aware of before.

Marshall says that as you protect yourself, you become more aware of the effect it is having on you.

Check out Protecting Your Eyes From Sunlight.

You might also check whether any of Vic's supplements containg Vitamin D, especially the calcium supplement. It's probably pretty safe to avoid supplementation of D, as well as to protect her eyes.

Of course, it is good to put in a call to the doctor, to be sure it doesn't need to be checked. And, of course, these things always come up over holidays, when the doctors are unreachable.

I'm just going to ask a couple of questions here of experienced Lymenet denizens, 'cause I don't know the answers but they may be important questions for this.

First, is there really a LLMD in Michigan?

Next, I really don't know Minocycline, and I don't see dosing for it in Dr Burrascano's Guidelines - is that dose (100mg 2x/day) likely to be effective for neuro Lyme?

Dan

I will do a search on uveitis and iritis, must be the key words i need. I will also look at bpeck`s past posts.

I went to protecting your eyes from sun light and will take steps on this.

There is no vit. D in anything Vic is taking.

I have left a message for Dr. to call he will

Thank you river lady

Dang

Yes Vic has neuro. lyme, she has had LD for
10+ yrs. we jumped through the poop hoops
with the ducks like almost everyone eles on this board. All thay did was take our money
( no insurance ) and missDX. Vic`s neuro.
symptoms have been her worse symptoms.

Yes we do have LLMD`s here in Mi.
Dr. L seems to be the best but has a waiting list as long as six arms.

Dr. S is the one we see, we know some of the
LD victoms he has helped, one lady is a close
friend, after 2 1/2 yrs. she is getting out
and about again, we are happy for her she is a wonderful lady.

There is also Dr. M , I am sorry to say he has backed off on hard lind treatment, the
Mi. med. board is after him, and he will no
longer treat without a pos. test.

Mino. is in the same famley as doxy. but is said to be much easier on the stomach. Vic
has realllllly bad stomach problems.

I have been trying to learn as much as I can
about LD and feel I have learned a lot but know very little of what there is to know,
But I must agree with you I also feel the
dose of 100mg. 2x/ day is not high enough
for neuro. LD, I am going to take this up
with our Dr. next time we talk.

Thank you dang

A smile on your face, a sparkle in your eye,
down the road.

don't know about the eye problems but my LLMD just took me off Mino after only 11 days because I got a very bad headache.

He had warned me before that this could happen with Mino and that I'd have to stop immediately because there is a side effect of Mino called "Pseudotumor cerebri". I don't know if my headache was PC or only a herx - fortunately, it went away three days after stopping.

If I remember well another board member - Gardengirl - had this problem once. Here is the link: http://flash.lymenet.org/ubb/Forum1/HTML/014697.html

You may want to call Vic's LLMD immediately and ask him what to do. It could be dangerous - so take care.

Gabrielle

Don't know much about the LLMDs in Michigan, but I think Steve checked it out pretty well.

200mg per day is, I believe, the usual dose for minocycline. It penetrates the cells more effectively than doxy, and is used for neurological Lyme.

I dont know why but I had her stop the mino
yesterday, I felt if it was an herx. it was
bad enough to take a break from. I will talk
with Dr. about all this when he calles back.

I went ot the link you gave me and will do more research along that line tonight after
I get Vic to eat dinner, have to make sure
she eats right even thou she dont feel like it. I will get Vic an eye exam next pay day.
Hope thay dont cost to much.
Thankyou Gabrielle

Riversinger

Thanks for the back up.

Dang river is right I have checked things out
as best I can, I dont know if our LLmd are
the best I know they are not the worst, and
thay all listen and will read anything you
bring in to them, and thay will work with your famley MD. I do not say this because I
am mad at your Q about LLMD`s in Mi. please
dont think that, I want others out there to
know that MI. has MD`s that will fight LD
the way it should fought. I think we are all
still learning about LD and will be for years
to come.

You see I have been telling the ducks around
here for about 7 years that Vic has LD, and
yes I know you would belive all the crap we
have been told.

Thankyou one and all

Good also to hear that the Mino dose is normal... but I wish I had other ideas for you for improvement.

My best to you, and of course to her - I hope her head pains are short-term.

Lid twitching, stabbing pains like pin pricks, or sore muscles when moving the eyes, or when trying to focus the eyes, are included in the neuro symptoms I had .

(The dizziness is probably from the Mino).

The last thing you want is for immune cells to enter the vitreous humor (Uveitis, i,e, inflammation of the uvea track of the eye).

And, you'll have to consider if herxing is exacerbating any eye condition. My eyes were what was the deciding factor on when and how much abx I could take, almost everything the fisrt 8 months of my therapy made the inflammation in my eyes worse.

Mino penetrates the eyes way better than doxy
so I had to work my way up to Mino.

I also used Terramycin eye ointment (Made by Pfizer - it's sold as a veterinary product in this country, but is for humans in the rest of the world.) every night for about 5 months in my eyes, then switched to CAN-C (n-acetyl carnosine) antioxidant eye drops for a month.

quote:

---

Originally posted by shelley:
This is probably just as hard on you as it is Victoria.

It is so good she has someone like you to be there for her. (so many Lyme patients don't have family support)

You are doing great so keep it up and hang in there.

---

Shelly, thanks for the pat on the back, I
needed it. This is hard on both of us but
more so on Vic, the worse thing for me is not
being able to take her pain away, I hate to watch her suffer it makes me sick to my stomach when there is nothing I can do.

bpeck, thank yuo for your help, I did a search on your old posts last night and have a lot of good info.

I am trying to find an eye Dr. woh is willing to learn about LD> and eye problems.

Good day to all