posted
Hello. I'm new here. But not new to Lyme and babesiosis. I've probably had it for at least 8 years, and was diagnosed and have now been in treatment for 18 months on multi-anbiotics.
I'm writing to see if there is anyone else out there who has trouble with light. I cannot bear sunlight-- it can cause seizure-like events. My house is blacked out all the time except for low lights. Can't take car lights. Can't drive. Have migraines. Am on Rocephin IM and Biaxin. This is limiting my life like crazy and I'd love to connect w/ anybody who is having severe photosensitivity.
FYI: I have seen Lyme literate opthamologist who says my eyeballs are fine. Spect scan showed what my Lyme doc thinks is Lyme and/or herpes in brain.
I wish you all well and send good wishes. I'll check back in and hope to hear from you.
Thank you so much.
Troopergirl7
Posts: 5 | From Washington State | Registered: Feb 2006
| IP: Logged |
posted
Light sensitivity is not uncommon because these bacteria hijack our normal vitamin D processing. They deplete 25D while creating excess 1,25D. Vitamin D is called the "sunshine vitamin" because light also helps make vitamin D.
If your vitamin D levels are already abnormal due to the infection, light exposure can drive those levels even further out of norm, and produce symptoms like those you describe.
This topic is covered in great detail at marshallprotocol.com Consider reviewing the info there to see how their treatment plan might fit for you.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
This was one of the symptoms I hated the most. It also was one of the last to go away but it did and it will for you too.
Keep treating and pay extra attention to detox. There is life, sooner or later after lyme.
All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
| IP: Logged |
A bit of good news though TODAY was the first day I could go outside and not immediately feel sicker in the sun. I was all covered up as usual but didn't feel an immediate increase in symptoms.
I also was able to drive in the sun without my eyes feeling like they were short circuiting. I was able to sit at a friends table and join in the conversation. The room didn't seem especially bright, however, until today the lights in this room were blinding to me.
When I go outside or in the car. I wear a hat, dark glasses and big scarf wrapped to cover my neck, chest and any exposed skin. I wear long sleeves and gloves or on hot days wrap my hands in my scarf. I don't let any light touch me. I walk in the shade and then get indoors as quick as I can.
When indoors I never sit near a sunny window or looking toward it. I always choose the chair facing away from the light. Headlight are blinding at night.
Avoiding sun has been essential for me to feel good enough to resume a normal work schedule.
The light sensitivity is worst on doxy, less on tetra and even less on Plaquenil & Biaxin (my current meds). Even still I need to be covered up. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
| IP: Logged |
posted
When I relapsed I had to live like a vampire for about 6 months. Even the computer monitor lght was too much. Yeast made it much, much worse. I live in South Texas so to avoid the sun is to be a prisoner. Amoxy and bicillin cleared it up very quickly, within days. I still have days I have to stay indoors due to nerve pain and heat intolerance. But most days I am out in the 100 plus degree heat and my body loves it. I like to be hot, feels good. Here's to wishing you well on this symptom, I know it sucks big.
Posts: 160 | From texas | Registered: Oct 2005
| IP: Logged |
posted
When I relapsed I had to live like a vampire for about 6 months. Even the computer monitor lght was too much. Yeast made it much, much worse. I live in South Texas so to avoid the sun is to be a prisoner. Amoxy and bicillin cleared it up very quickly, within days. I still have days I have to stay indoors due to nerve pain and heat intolerance. But most days I am out in the 100 plus degree heat and my body loves it. I like to be hot, feels good. Here's to wishing you well on this symptom, I know it sucks big.
Posts: 160 | From texas | Registered: Oct 2005
| IP: Logged |
bettyg
Unregistered
posted
Dani, thanks for referring troopergirl to me!
I'll copy/paste my newbie info here for you including MY SENSITIVE EYES, NOIR SUNGLASSES, and marshall protocol message board....lots of good tips there. See my below notes for more info ok!
You can PM, private message me, on my post, look for the 2 people standing together, and click on there. That's a PM, private between you & me & moderators should they chose to read it!
Welcome to this 24/7 LYME support group board!
Before I forget about it, all PM, private messages go to YOUR HOME email address.. If you want to keep info, file it in your HOME FILE FOLDERS. Lymenet PM allows 60 notes only & they add up fast; so delete them promptly from lymenet folder.
Make sure on ``MY PROFILE'' you edit it to show you ALLOW PMs so folks can send you a private email vs. On public board. Also change the viewing notes to VIEW ALL NOTES vs. 30-60 days only. Very helpful when you do searches on specific topics.
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
mention you have lyme and marshall protocol, they will give you 20% off!
I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
Glad you found us; we have much to share with you. Hats does a lot of what I do also.
IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
It use to bother me terribly since treatment its not near as bad.
I remember I couldnt even stand a light on in a room like daggers in my eyes. Now if iam in sunlight very long it seems to make me edgy? and if working outside and sweating I use to get really crawly now that only happens rarely and not as bad,Iam taking probiotics complexb vitamin,Mg,cq10,yogurt here and there,acidophilis everyday,ocasionally glucosomine.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi ALL
I had real bad Photo Toxic reaction while taking doxi--2 yrs Light from my computer screen would blister my skin--Im not kidding-- Eye problems--rays heylowes ect
After doing some reasearch I found out that citrus-(any type) and cranberries can cause this photo toxic reaction to occure when taking cyclines--
I cut out ALL citrus and cranberries from my diet and the Photo Toxic reaction stopped Completely-- (took 2 months tho)
I can now go out into the Full Texas Sun with No Problem--All day-- ( I even started getting a sun tan)
I have to make sure that I eat Zero citrus-cranberries of Any type--
1 TSP of lemon juice is enough to cause this reaction--Quickly- hours Im Serious--
Things like a Few drops of Grapefruit Seed extract-GSE the citrus in ONE soda- Lemon is salid dressing ect.
Will cause the photo toxic reaction to happen -Quickly
Look into your diet and SEE if Anything could be causing this effect on you--
I could be Anything in your diet-- (potatos corn tomatoes -who knows)
Google- Photo Toxic-good info there-- Sun Poisining also
I am Perty Sure that the citrus makes the Doxi stronger some how-- Maybe makes it get absorbed better or something--
Because when I cut out the citrus-- the doxi Lost some of its Good effect also-
At the moment I am drinking Tonic Water(Babs) that has a small amount os Lemon in it-- Ouch
So I am being careful about the sun at this point -- (I cant find tonic water with out citrus in it) --Figures--
Look into your diet and See what you find- Hope this helps--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Try treating babesia.
This may help or get rid of it.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
TODAY was the first day I could go outside and not immediately feel sicker in the sun. I was all covered up as usual but didn't feel an immediate increase in symptoms. ![[Cool]](cool.gif)
Printer-friendly view of this topic