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Posted 11/22/2008 1:03 PM (GMT 0)
I awoke this morning to extreme light sensitivity.

Now my question is this. IS THIS A HERX? OR

AM I NOT GETTING THE LYME UNDER CONTROL?

How do I know if I'm getting better?

What is up?
Posted 11/22/2008 9:03 PM (GMT 0)
Hoping this is part of the lyme big time! It is one of the symptoms. When you are getting better this sort of stuff will seem like a distant bad dream!
Posted 11/22/2008 9:07 PM (GMT 0)
Oh and watch out for alcohol, did you have a drink of any kind the night before....that will make you feel very sensitive to everything and also give you a mirgraine as well.
And you will notice that your symptoms will be worse right before or during your period. So try to keep an eye on that calender. You may be making great progress but at this time of the month of us ladies it will not seem like it at all. So stay on the right path.
Posted 11/22/2008 9:18 PM (GMT 0)
I can't drink in this state. Maybe it is my period!

Martha you're a genius
Posted 11/24/2008 7:26 PM (GMT 0)
Just read your entry about light sensitivity. My 16 year old daughter had this symptom at the beginning (five months ago) and continues with it. She has to wear dark sunglasses all of the time. Cloudy days are the best days for her. However, the light sensitivity gets better when her headaches break up. They started to break up after she started her meds since seeing Dr. Jones in Connecticut. She was on the meds (Zithromax, Plaquenil, and Rifampin) for three weeks. We now know that she also has the co-infection Babesiosis and has stopped taking the Rifampin and picked up on Mepron and Artemisinin. I am thinking positive and believing that the meds are starting to work. We were told that the headaches and light sensitivity would be the first things we would notice an improvement with once we started the meds, so maybe yours will start correcting itself soon. Wish you the best . . . .
Posted 11/24/2008 8:41 PM (GMT 0)

Keeping the Faith,

Is it your understanding that Zithromax and Plaquenil are good for the headaches and photosensitivity?

I am looking for my next antibiotic mix.. Been on doxy for 8 weeks, minocycline for 16 weeks.

Chief

Posted 11/24/2008 11:30 PM (GMT 0)
Hi Hoping,

The photosensitivity is a symptom of lyme, I had it for years and did not know why. The meds I take are making my eyes worse and I was told to wear full spectrum glassses made by Noir. Since I got the glasses, my eyes stpped hurting and they used to burn all the time and the glasses have that all under control. If you contact any institute for the blind and ask for amber lenses, low vison glasses, they should have them for sale. Should fit over your glasses if you wear them. You discuss all of that and pick the measurment that will fit. They should not cost much over 50.00. They block bright light and protect your eyes from ultra violet light too.
Posted 11/25/2008 4:42 AM (GMT 0)
Great. I had it again today with the eye pain. I have been on antibiotics for about a month. But not a solid month as I got sick and had to stop for several days.

Although, I'm able to do things like this at night, my joints are worsening -- they all are popping now ...

Progress or regress? WHO KNOWS
Posted 11/25/2008 10:33 PM (GMT 0)
Hi Hoping,

I find if I take the sunglasses off, the pain behind my eyes starts within minutes. Also I had the crunchy joints, my neck was horrible, I would visit the chiropractor and get in the car and swear it seemed everything was out of wack again. Sept. this year I started marshall protocal and the crunching stopped and is now returning so I think its normal for it to come and go. I have not had to go to the chiropractor for a long time now, although it feels like its on the brink of becoming a problem again. I totally have my fingers crossed it doesn't get as bad as it was. I find heat helps alot. Hope things improve for you soon.

Posted 11/26/2008 12:07 AM (GMT 0)
Why does it come and go? Can't go away and stay away?

Also, why is Lyme Disease so controversial? I hate being dismissed by know nothing doctors.

Gosh, I was NEVER sick before I got a rash. But that means nothing to these idiots.
Posted 11/26/2008 12:54 AM (GMT 0)
Hi Hoping,

Are you on meds for lyme? The reason things come and go for me is the meds kill off a lot of bacteria and dumps the toxins into the bloodstream and you feel worse. then there are different things going on so it could be the bacteria in a certain area are being killed so that area is more affected. I find my neck has a lot of problems because I have had whiplash about 6 times and so the area seems more likable by the bacteria. Areas in my body that have had recent injury seem to be prime to attack. I have read different opinions and I think they are all valid.
Posted 11/26/2008 10:35 PM (GMT 0)
Try wearing a baseball cap or brimmed hat, it can be just as good or better than sunglasses depending on the type of photophobia. Also, avoid watching TV with all the lights off or going to the movies, the concentrated light flicker in a dark room can be a problem depending on the type of photophobia.
Posted 11/26/2008 11:05 PM (GMT 0)
Thanks everyone! Yes, I'm being treated with doxy and biaxin. I take fresh garlic and drink green tea. Am looking into the benefits of pineapple. I forgot what it's called, but there's an ingredient in it that helps you absorb the antibiotics too.

Any ideas on de-toxing. I just did a sauna.

THANKS!
Posted 11/28/2008 5:26 AM (GMT 0)
Garlic won't do much. But vit. C will help you big time and supplements. You need to try to help your immune system out as much as you can. Like more than when you were pregnant. Stress and bad diet will keep you from getting better. Of course hit it with the abx and silver...but feed your body with great fuel for the fight.
Lights were awful for me. I did not like going outside. And the lights at night were bad too. And sound, it was like being in a night club with a headache, all the time. I have trouble looking at this screen as well on my lap top.
I never understood why people thought my house was dark for the longest time. Me and my kids could not handle the light.
For some reason, maybe herxing, this light problem has just come back along with the head aches. And nausea. It even hurts to blink. I am hoping it is going to pass, and is happening because of the 15 hours of IV treatment this week.
Base ball cap is a good idea, with shades...lol
Posted 11/29/2008 6:11 PM (GMT 0)
I don't believe I ever had this prior to antibiotics best that I can recollect. It's a perpetual herx then or the abx brought it out. Don't know -- could be toxins.

Hope you're feeling great soon Martha's Vineyard. Sounds like a herx.
Posted 12/7/2008 11:45 PM (GMT 0)

Chief #7,

Sorry, I haven't been on this site for some time.  My daughter was on Doxycycline for quite a while and we feel it didn't do anything for her.  Doctor Jones took her off of that one and gave her Zithromax and Plaquenil.  I think the Plaquenil is for her joint pain, but I could be wrong.  The Zithromax would be the one to help the other symptoms; however, the combination helps the overall picture.  Doctor Jones has since added Mepron 750 mg 1 tsp 2x/day and Artemisinin, an herb, 200 mg 2x/day.   From my reading I have learned that the Mepron and Artemisinin together help with the Babesia co-infection.  Someone told me that the Plaquenil doesn't kick in for 12-16 weeks.  We are on week six and keeping our fingers crossed.

The light sensitivity is awful for her.  She wears the sunglasses all of the time.  We keep lights off in the room where she is, and keep the blinds closed, too.  She said that when her headaches aren't that bad that the light sensitivity isn't that bad either.  The suggestion someone else made about wearing a baseball cap is a great idea and I'm going to pass it along to her.

We wish you luck and hope to read about this symptom stopping for you very soon.

Posted 12/8/2008 12:53 AM (GMT 0)
Keeping the Faith - Would a visit to a neurologist be in order here?

Extreme photophobia needs to be addressed. What does her doctor say?

Thanks for everyone's insights. That sun is beautiful but so very bright.
Posted 12/8/2008 2:33 PM (GMT 0)

hopingToFindCure said...
Why does it come and go? Can't go away and stay away?

Also, why is Lyme Disease so controversial? I hate being dismissed by know nothing doctors.

Gosh, I was NEVER sick before I got a rash. But that means nothing to these idiots.

This is how I feel about LD:

Welcome to the "Hotel California"... you can check out anytime you like, but you can never leave. (the Eagles)

 

                                                                rolleyes shocked   smhair   skull   smhair   shocked rolleyes
Posted 12/10/2008 7:16 PM (GMT 0)
Hoping to Find a Cure -- we were seen by a neurologist on 10/1/08 -- top one for kids in CT, and we were told that my daughter was crazy!!!  Makes you wonder how educated some of these doctors are.  Anyway, her light sensitivity goes away when the headaches break up.  Hopefully the New Year will bring some relief.
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