| Author | Post |
|---|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Wed Mar 17th, 2010 21:57 |
|
Just wondering if anyone else has experienced issues with heart racing from light exposure? Thats happened to me a couple of times but I'm fine once I get out of the light. Just started the MP 1 week into and wondering if anyone else has had this happen to them or could offer any insight. Thanks for your time!
Amy 
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
johnmcc
Member
|
Posted: Wed Mar 17th, 2010 22:13 |
|
Hi Amy
Welcome to lower 1,25 D, hormone changes and IP.
Make sure you wear NoIR's, cover up and sunscreen when you are out as light generated IP can be very challenging. The cardiac stuff - you will get used to it...
Good luck
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/09
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Wed Mar 17th, 2010 22:52 |
|
Thanks for that! So you've had the racing heart thing 2 then? Kinda worrisome  . Seems like my light sensitivity is actually increasing. Is that normal?
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
Knochen
Moderator
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 457 |
| Status: |
Offline
|
|
Posted: Wed Mar 17th, 2010 23:40 |
|
Yes, all normal.  This is why we stress getting all your light protection in place before you begin the MP. Welcome to the club!
You may notice not only racing heart, but a general anxiety or desire to "escape" when you get sun exposure. Once you know what it is, it's much easier to handle, but it can still be distressing, so don't put yourself in that position if you can possibly help it. You will often feel the effects of even a brief eye exposure for up to 2 days. Insomnia is very common on top of agitation and increased IP symptoms.
You may find that some kinds of artificial light are fine while others will set you off worse than sunlight. Only time will tell how sensitive you may become and how long it will persist. It took me 3 years to be able to go without my glasses in a store or at work. I still prefer to wear them outdoors if it's anything but dusk or heavy rain clouds.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Thu Mar 18th, 2010 00:41 |
|
| Thanks for that! Yea barring looking out the window briefly I hadn't gone outside! I guess I did have the overhead light on which I don't usually. I know what you mean about that escape feeling as well. So I'm trying to think how I'm going to get to the doctor and avoid all light in FL in the middle of the afternoon lol. HHmmm thinking blanket or something . Well thanks for the info. So just curious why the light sensitivity increases...? Also is the mino going to make this worse? The light issue anyway? Thanks Last edited on Thu Mar 18th, 2010 00:43 by danandamy77
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
Deedee
Member
|
Posted: Thu Mar 18th, 2010 00:57 |
|
| For me the light sensitivity was the worse in the first 6-9 months. Now I just wear the NOIRs when the sun is bright or I don't feel well. However, I always cover up.
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Thu Mar 18th, 2010 02:36 |
|
| Did you happen to have the heart racing thing? Just wondering
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
Deedee
Member
|
Posted: Thu Mar 18th, 2010 02:50 |
|
| No...I got dizzy.
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
|
Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
| Status: |
Offline
|
|
Posted: Thu Mar 18th, 2010 07:12 |
|
I find that the racing heart or other light reactions hit hardest when there is neurological IP/herx.
Did you think to search using the white box (upper right on page)?
I went to the MP knowledge base and typed "light" into the search box:
http://mpkb.org/doku.php/doku.php?s=light&x=0&y=0
p.s., 20mg of Benicar dissolved under the tongue works really fast for me when I have neurological IP/herx symptoms.
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
|
johnmcc
Member
|
Posted: Fri Mar 19th, 2010 17:15 |
|
Hello Amy
I spent the first year (or more ) with daily cardiac IP, sometimes background, sometimes so strong I was really spooked (including a 4 day white knuckle ride)...one of the main triggers was light exposure, especially floro tubes.
However, my MP Doc did warn me of the potential for cardiac involvement when I started (I have been through multiple pneumonia episodes and those little bugs live around the heart)
As I have progressed through, the cardiac IP has waned & disappeared - not to say it will not reinvent itself when I start phase III or get to stage 5...
Most important factor to remember that you need to understand the IP, check yourself for any other symptoms of cardiac issues (pain, pin&needles....all that jazz) If they are not there - its usually all IP. Usually an increase in beni frequency, or a 20mg under the tongue will help
If your still not sure, your MP doc should be the next resource.
As you are just starting, there will be a substantial settling in period with benicar alone, lots of action/reaction to your 1,25 dropping, hormones etc all readjusting to a different level of 1,25..
Enjoy  the ride.
Regards
John
____________________
Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/09
3/12/08 (25D 10.8 1.25D 27.5) Phase 2 22/01/09
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Sat Mar 20th, 2010 00:07 |
|
| Thank you for all the info! It seems to be the light thing and haven't had the heart racing since that one time. I have now blackened my house lol. Brain feels much better in the dark. Hey one worry I have ...I keep thinking now the Benicar isn't just "masking" things is it? Like if I went off it I wouldn't just drop dead or something lol . I guess its hard to say exactly. BTW what was the 4 day knuckle ride? Slightly alarmed lol! But since its gone...hey maybe you were due a heart attack on down the road and escaped that fate?? I know A LOT of my family members had heart attacks. Just a thought.
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Sat Mar 20th, 2010 00:09 |
|
| Oh wow so I'll actually be able to leave the house again! Yay thats encouraging.
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
Deedee
Member
|
Posted: Sat Mar 20th, 2010 00:18 |
|
Remember that anxiety is IP, too. For me, it means avoid the bright lights, put the NOIRS on and drop down on the antibiotics for a while. Oh...and take a nap. Try not to go there with the fears. It is hard, but it is part of the disease. I took Mindfulness classes to help me. I am not 100% there by any means, but better with the anxiety and worrying about all the negative things my disease could bring, or assigning really bad outcomes to my IP.
We are doing something positive to get better (MP) and we have a lot of people that have come before us that have enjoyed great improvements on this protocol.
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Sat Mar 20th, 2010 00:36 |
|
| What are Mindfulness classes? Sounds interesting! If you don't mind my asking how are things going for you? I see you have been on here for 2 years. Is that MP two years as well?
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
Deedee
Member
|
Posted: Sat Mar 20th, 2010 01:47 |
|
Mindfulness classes teach you how to stay in the present and calm yourself down when your mind starts wandering to "what ifs". You can probably find them in your area. There are guided meditations and exercises you can learn.
You can read anyone's posts by going to their name, click on "view profile" and the "posts." I kept mine in the curemyth1 in the hopes it might help someone instead of moving it to the other site.
I have had a whole lot of improvements since I started the MP, which are documented beyond my reports in my labs, chest Xray and breathing tests. I have had to move very slowly and I am likely to start my 4th attempt into moving to Phase II. It took me a while to recognize anxiety as IP, but now that I know it is one of my main markers I am going too fast or I need to slow down. The first 6 to 9 months were the toughest not only because of the IP, but because I was still trying to wrap my mind around being diagnosed with a chronic and potentially deadly disease.
My husband is also on the MP. He was diagnosed with sarcoidosis 28 years ago and I was diagnosed almost 2 years ago. Although his is supposedly more progressed than mine, I have been able to progress through the antibiotics much less quickly than he has. The times I pushed myself (knowingly or unknowingly) I regretted it. Part of the journey is learning what is IP and what works for you to slow it down if it gets too much. I would consider "heart-racing" to be an IP that deserves respect. As to what it is or what is causing this, I don't know. My heart races when I am having anxiety and I used to have panic attacks when I was young and my heart raced then, but this is the only experience I have had with heart racing. It has not been part of my IP experience. Last edited on Sat Mar 20th, 2010 01:49 by Deedee
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
|
danandamy77
Member
| Joined: | Thu Mar 4th, 2010 |
| Location: | Naples, Florida USA |
| Posts: | 125 |
| Status: |
Offline
|
|
Posted: Sat Mar 20th, 2010 03:26 |
|
Hey! Thanks for that and I will have a look. As far as heart racing I am definite positive it was sun exposure. Why? B/C it happened to me before I started the MP only at that point I hadn't made the connection to the sun. I was driving along (sunny day as I live in FL) when all of a sudden my heart started just racing and I was sooooo freaked out b/c I had no idea why. I just called 911 and was like about to pass out in the road. VERY SCARY!! Well I'm still kinda ticked no one mentioned the sun as a factor to me even in the ER!!! hullo lol?? You would think SOMEONE might know this . It wasn't till I was like ALRIGHT HAD ENOUGH THANK YOU going to find a cure now that I came across the MP and low and behold ...sunlight issue . So just doing the one little thing of avoiding light nearly completely alleviated an ENORMOUS headache I had had for the previous 3 months. And so how I know it was light exposure is it was a MUCH milder form of the same heart racing. As in I went to lay down in a dark room and felt immediately better. I didn't realize overhead lighting and incidental lighting would also be a factor. Well live and learn! And THANK GOD someone knows about the light thing!!! wowzers
Smiles,
Amy
PS .....still trying to figure out how to go to a midday doctor appointment and come back alive lol!! I've been thinking about putting a blanket over my entire body and having hubby drive me.
____________________
Lyme, Babesia, Hypothyroidism, Anxiety, Ph1Mar10
|
eClaire
Member
| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 375 |
| Status: |
Offline
|
|
Posted: Sat Mar 20th, 2010 06:07 |
|
Light sensitivity typically increases when you start taking antibiotics. You might want to stay on Benicar only a while until you adjust, as you want to keep your symptoms tolerable. Like you, I have significant light sensitivity before starting the MP, and my light sensitivity became extreme (I don't think my experience is typical even though many people have to wear NoIRs indoors for one to three years).
When I started the abx, I got to a point where I had to stay in the complete dark for three weeks (not even a pin prick of sunlight could enter the room). I could handle a 15watt bulb at my back for about 15 to 30 minutes a day. That's while wearing 2% NoIRs. I had to take a shower in the dark with the door only open an inch and a 15watt light on 15 feet away in the other room. Luckily, I had my local hardware store order the 15watt lights in advance and I used those in the regular lamps for the first two years. Also, I had dimmer switches on all of my overhead lights so I could dim them to how I was feeling.
Make sure you wear your NoIRs indoors and turn down your computer screen. Some people find overhead lighting particularly difficult. Some people find florescent lights or particular florescent lights harder to cope with than regular incandescent lights.
Also, I did have to travel to the doctors sitting in the middle of the back seat with a blanket draped over my entire body. After about six months, I found I could go out in mid day in the car briefly. Why mid day? Because the sun is directly over head and not shining into the car from the sides. I have heat reducing film on my car windows--that helps some. I also carried a big piece of black cotton cloth that I kept in the car for a long time to throw over my legs (rather than wear long johns as some do). It's amazing how much better I felt and how much cooler my legs felt under the cloth.
Luckily, I was able to stop using NoIRs indoors at about 20 months into the MP as long as I kept the light bulb next to me at 15 watt and wore my NoIRs in other people's houses and watching TV. I was able to increase the rest to 30 watt. Now a year later and I've got 25watt bulbs next to me and 40 in the other lamps and I can sometimes watch TV without my NoIRs.
Also, when using light or watching TV, it is usually helpful to have another source of light in the room. For example, trying to use the computer without a light on would bring on neuro IP for me.
Lastly, if you heart is racing, sit or lie down.
Hope this helps, Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
|
Current time is 10:41 | |
|
