posted
Please note... At the times I'm describing below, in the past and now, I was not and am not on antibiotics at the moment. I understand that abx give symptoms of sun sensitivity.
I have had lyme disease practically my whole life since I was 7, and am now 28. I have tried many treatments over the past few years including abx, rife, herbs, diet, acupuncture, supplements, etc. etc. many of which have helped. I also have had a majority of the Lyme symptoms, anxiety and back pain being my biggest most frustrating symptoms, however, a new one has become prevalent that I can't find ANY info on....
A couple years ago I noticed I was sensitive to the sun, however, not skin sensitive. I was at a football game and it was a clear sunny day and I started feeling extremely fatigued, overheated, anxiety, then I had the chills, and felt awful for the rest of the day. Throughout the couple years, my sensitivity was pretty mild until now. Over the last couple weeks were the first sunny days of this spring. It has been 55 to 65 degrees and sunny. I took a ride in the car and almost instantly felt anxiety, hot, and 5 minutes later at my destination was tired and had the chills. It was the same on the way back. I literally can't be in the sun at all, and even driving to work at 8am effects me. I am EXTREMELY discouraged about this because I have been for the most part a lot better from various treatments. Now I can't set my foot into the sun or else I get this reaction. WHAT IS THIS????? Anyone else have this experience or know ANYTHING about this??? Please help!! This is not me at all... I love the outdoors... I can't go on with my life dodging the sun. I am resorting to shadow hopping and feel like a freak.
Posts: 3 | From Maryland | Registered: Apr 2009
| IP: Logged |
I have this. For me it's not the sun itself but the heat that comes from it. I also have problems in the house if I get too hot while doing things or the shower is too hot.
Check out the website and see if you have the symptoms.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
| IP: Logged |
posted
Hmm, I'm not sure this is what I have, because I am certain it is the sunlight itself that bothers me. It doesn't have to be hot for the sun to effect me.
Posts: 3 | From Maryland | Registered: Apr 2009
| IP: Logged |
bettyg
Unregistered
posted
are you on doxycycline?
welcome i had to scroll on by most of your note but wanted to ask the above of you. so sorry of your LONG lyme journey; me; 39 yrs.; 34.5 yrs. misdiagnosed by 40-50 drs.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
IP: Logged |
posted
no, i'm not on any abx at the moment. I had been on doxy for a few months a little over a year ago but hadn't experienced sun sensitivity as severe as I am now.
Posts: 3 | From Maryland | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Kristen,
Was a few months of doxy over a year ago the only treatment you had for lyme ? I could not read your post but just took a shot at one of your replies.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Reformatting this so that more can read it. (Many here have nystagmus - eye spasms - from lyme. Short paragraphs with double spacers are best for most eyes here. )
=======
Kristen's original post:
Please note... At the times I'm describing below, in the past and now, I was not and am not on antibiotics at the moment. I understand that abx give symptoms of sun sensitivity.
I have had lyme disease practically my whole life since I was 7, and am now 28. I have tried many treatments over the past few years including abx, rife, herbs, diet, acupuncture, supplements, etc. etc. many of which have helped.
I also have had a majority of the Lyme symptoms, anxiety and back pain being my biggest most frustrating symptoms, however, a new one has become prevalent that I can't find ANY info on....
A couple years ago I noticed I was sensitive to the sun, however, not skin sensitive. I was at a football game and it was a clear sunny day and I started feeling extremely fatigued, overheated, anxiety, then I had the chills, and felt awful for the rest of the day.
Throughout the couple years, my sensitivity was pretty mild until now. Over the last couple weeks were the first sunny days of this spring. It has been 55 to 65 degrees and sunny.
I took a ride in the car and almost instantly felt anxiety, hot, and 5 minutes later at my destination was tired and had the chills. It was the same on the way back. I literally can't be in the sun at all, and even driving to work at 8am effects me.
I am EXTREMELY discouraged about this because I have been for the most part a lot better from various treatments. Now I can't set my foot into the sun or else I get this reaction. WHAT IS THIS????? Anyone else have this experience or know ANYTHING about this???
Please help!!
This is not me at all... I love the outdoors... I can't go on with my life dodging the sun. I am resorting to shadow hopping and feel like a freak. -
[This is Kristen's 3rd post and she is from Maryland]
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Do your EYES bother you in the light ? If so, does that eye irritation come before the other symptoms from sun/heat.
I have major trouble with light into my eyes and my inner ear also goes haywire from that - and that creates all sorts of nausea and other symptoms. Could this be part of what is happening with you?
It sounds to me a combination of heat, too. Are you wearing cotton or natural-fiber clothes next to your skin? I can't wear any synthetic fabrics at all. Cotton is best for me. Otherwise, I feel exactly as you describe and I nearly pass out, even in winter.
So, where are you with treatment for lyme. Did the combination approach work for you? Are you still treating in ANY fashion?
Other than the sun problem, are you okay, otherwise?
posted
Systemic lupus will make you very tired when you stay in the sun. I found out the hard way. Before I was diagnosed, I would go in the sun and would become completely exhausted. So, I would stay in the sum some more to cure my exhaustion. Big mistake. Check to make sure you don't have lupsus
Posts: 123 | From Los Angeles | Registered: Oct 2006
| IP: Logged |
lymeparfait
Unregistered
posted
Sound like lupus.
I have it. Agree to check out your ANA and look up the symptoms. Symptoms are much like lyme.
My LLMD believes most lupus is induced by lyme, and with lyme treatment, lupus can go away.
My symptoms in the sun have improved dramatically!
Left untreated, lupus can be permanent and do much damage with the immune system attacking the body organs. This scares me more than lyme.
posted
speaking of lupus, if you have this and can't work, you can get approved fairly easy for SSDI, disability insurance benefits!! i've known of many all approved.
IP: Logged |
posted
Another thing to check out is Porphyria. I don't personally have it or know very much about it but my neigbor has it and gets VERY sick when out in the sun very much at all.
Posts: 22 | From Oregon | Registered: Feb 2008
| 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!
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
Printer-friendly view of this topic