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Meg Mangin R.N.
Research Team (on leave)
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Posted: Fri Apr 29th, 2005 17:40 |
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What precautions should I take when I must go out or when traveling?
Is this outing necessary?
Experience has taught us that travel can be detrimental to folks with advanced Th1 inflammation and rest is essential to enable some folks to tolerate the unavoidable immunopathology.
Before you decide to travel or even go out to do an errand, ask yourself if this is in your best interests, are you likely to tolerate this event and can the outing be avoided?
The Phase One Guideline states:
If you are photosensitive, you must avoid sunlight and bright lights by staying indoors as much as possible and covering up well whenever you have to venture outside during daylight hours. You must protect your eyes from sunlight and bright lights by wearing dark NoIR 907 (or the smaller NoIR 707) sunshades whenever outdoors, and the lighter NoIR 901 (or 701) sunshades inside.
Take necessary precautions when going out
Cover skin with dark clothing, hat, scarf, gloves, socks, etc. See Why does exposure to natural light increase symptoms?
Applying Rx Ketoconazole 2% Cream or sunscreen to your face and skin that may be exposed during your trip and while driving might help but please heed Dr. Marshall's warning:
"Not only is the sun block insufficient, the concept that it will allow you to freely move out-of-doors is flawed. You cannot change the way your body works as it heals. Nobody, not one person, has managed to recover without drastically changing their lifestyles."
Wear 2% NoIRs (if needed) to protect from natural light. (the Bolles are only equal to the 10% indoor NoIRs.)
"The short-term consequences of not wearing adequate eye protection will be an increase in neurological symptoms caused by stimulation of the Amygdala in the brain. These neurological symptoms include fatigue, iriitability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychosis." ..Trevor..
--my state offers an application for sun-screening medical exemption for your vehicle and one can also get a handicap parking decal. The wording on the form is interesting. You must certify: "I am a person with Lupus or a similar medical condition which requires limited exposure to light ..." I'd be more than happy to share the info with you by PM, if this info isn't appropriate for this forum. ~ToniD
Carry Benicar with you at all times
The recommended first step when symptoms are intolerable is to take an extra oral 40mg Benicar immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly. See Benicar dosage and schedules
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster
If intolerable symptom/s persist, increase oral Benicar to every three or fours hours around the clock (set an alarm if needed). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose.
Have a good supply of Benicar on hand in case you need to take it more often or have trouble sourcing the next Rx, especially if you live alone. Never go anywhere without a small container of Benicar and Mino in case you are unavoidably detained.
"I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing." ..Trevor.
When traveling
You won't know until you try it if your vacation will be enjoyable while trying to recover from your Th1 inflammation. You may find that taking every precaution is still not enough. Keep that in mind and have some contingency plan for abandoning the trip if your symptoms become intolerable. We've had several members postpone long-anticipated vacations after they realized that travel might be harmful and/or they would probably not feel well while traveling.
Use the measures that have worked for you before to dampen immunopathology so you will feel your best when traveling. Please see How to take a break from the MP.
Don't forget to pack your own personal tool kit to manage immune system reactions for Managing Immunopathology. Include a copy of My immune system reaction is too strong. What should I do? Go down the list to check the aspects that may be affecting you including adequate hydration and nourishment, rest eg.
Consider maintenance MP antibiotics
For some, stopping the antibiotics is enough to stop the immune reaction and is a good strategy.
For others, immune response symptoms may continue or increase when antibiotics are stopped and continuing the antibiotics or mino at a tolerable level may be the best option.
For some, low-dose, high-frequency mino is helpful. See Why and when do you recommend taking minocycline frequently?
You may wish to experiment beforehand with adjusting your meds. See How to adjust MP meds.
Stress and anxiety may exacerbate symptoms
The stress and anxiety of travel may exacerbate symptoms. Consciously try to remain calm and peaceful even if you are delayed. Use your Rx anxiety meds as before or during your outing as needed. See How does stress affect Th1 inflammation? and How can I control my anxiety?
Rest: Taking time out to rest is very important to your health and healing, and your ability to cope.
Meals: Plan ahead with your host for appropriate MP meals. Maintain adequate Hydration.
Tips to avoid light
-Sit in the back seat for auto travel might slightly decrease natural light exposure.
- Have a wrap or similar clothing to drape yourself and or the car window.
-Take precautions wherever you stop.
-Travel at night.
Note that indoor gyms, shopping malls, airports, etc may have a great deal if natural light exposure because of skylights and or large windows or doors which may increase symptoms. See Do car windows, cloudy skies or geographical location affect the amount of sun exposure?
Natural light > protect skin and eyes.
Artificial light > protect eyes / not skin.
Be prepared
Not all hotel accommodation have good blackout drapes.
-I carried flat (dark colored) bedsheets and a package of sewing needles with me. Once we arrived, we hung/nailed these sheets over the windows, using the needles for "nails." With these window coverings, that guest bedroom was a nice retreat for me. Most people do not keep their house as dark as I do, so I tried to limit my social time in the rest of the house to after sundown. ~Belinda
-Another idea would be to bring a roll of aluminum foil and scotch tape if you plan to be staying at someone's home for any length of time. Foil is inexpensive and easy to remove. ~Reenie
-Redishades are an economical and easy alternative.
-Pack some 15 watt light bulbs if you need them for sensitive eyes. ~Lori
Immunizations carry the risk of transmitting CWD bacteria along with the vaccine. But traveling to a third world country carries risks of other acute infections. You should follow your doctors advice regarding the immunizations he feels are essential for you to travel. It should be noted that some of them are not mandatory and there is no way to know if they will work.
Traveler's diarrhea
According to several studies, it appears that regular use of acidophilus and other probiotics can help prevent "traveler's diarrhea" (an illness caused by eating contaminated food, usually in developing countries). Anti-diarrheals should be used with caution, especially if diarrhea is caused by a bacteria. Avoid using an anti-diarrhea medication (Imodium) until 72 hrs of diarrhea or if diarrhea threatens to cause dehydration.
Aircraft travel
Light is the main issue. If possible, travel at night, or position yourself near the window so you can pull the shade down. remember that although you are indoors at the airport, it is flooded with natural light so both skin and eyes need to be protected. See guideline for flying with heart disease.
"The recirculated environment in aircraft is full of aerosol pathogens. I have found, (and your mileage may vary because you are all still herxing) that reducing the antibiotic dosing interval to 6 hours before, during and after long flights seems to keep the body fresh, and the sinuses clear." ..Trevor..
scroll down for members experiences.
Related FAQs:
Traveling with oxygen
My respiratory function is poor. How can I prevent an acute infection?
Why is my 'herx' more intense after exposure to Light & / or Vitamin D ?
Avoiding Sunlight and Bright Lights
What are the recommendations regarding sun/light exposure?
Testimonials to the need to avoid light
(Scroll down for personal experiences and tips)
Last edited on Sat Aug 23rd, 2008 17:00 by Meg Mangin R.N.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
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Online
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Posted: Sat Oct 15th, 2005 08:05 |
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Belinda wrote re attending an appointment:
(filelink)
My tips are:
1) Explain the basics of the MP to your practioner/ physician and share all the basic background physician papers to read as they have time. Although s/he may not be managing your meds, s/he will likely be intrigued, and it always helps to have another physician on your team knowledgeable about the MP. Explain that you will be relying on them to help you so you can get the full benefit of the MP
2) Explain your need to restrict your exposure to sunlight and bright lights. If they understand this need, the office may be willing to work with you so you don't have to sit for a long wait in a sunny waiting room, or they may make it routine to place you in a treatment room with no windows or with dimmers on the lights.
3) Try to schedule your visits so you will have a short wait - if the waiting room is sunny. The office may be most likely to be running "on time" either the first appointment in the morning or the first appointment after lunch. You may wish to call ahead to make sure..
4) Wear all your protective clothing, including hat, gloves, NoIRs, long sleeves and K-cream when you go out to the doc. It helps if someone else will drive you to the office and drop you off at the door so you can quickly get indoors. Having someone else park the car saves you those extra minutes of sunlight while driving and walking.
5) Take off your extra clothing (jacket, hat, glasses, gloves, etc.) as soon as you are assigned a treatment room. If you have a friend with you, ask them to keep up with these articles.
6) Just as any other doctor visit, have in mind or bring a list of your most recent complaints so you can discuss these with the doctor.
7) After your visit, drink lots of water and schedule some quiet time at home - a nap is even better - so your mind/body can make the most of the treatment and recover from the sun exposure.
Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated << to help keep symptoms minimal..
for your trip or at any time of urgency. re Benicar: see extra half tablet (20mg) any time during cycle, or adjust dosage to 40mg Q4H. see also BenicarQuiklink
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Sat Oct 15th, 2005 08:07 |
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Personal Experience:
(filelink)
Air travel
From bitter experience I think air travel is a bit more than just wearing NOIRs and avoiding time in brightly light terminals.
My GP used to plead with his CFS patients who were finally getting better to avoid plane travel completely.
Once I got into Trevor's perspectives on rogue Vitamin D3 production in people with TH1 inflammatory illnesses, I went back to my physics desk.
90% of the UV which falls at ground level is the lower energy UVA. The balance is the more dangerous UVB. The even more dangerous UVC is pretty well absorbed by the atmosphere. However, at 35.000 feet in a plane, there is much more UVB, and plenty of the really dangerous UVC, which is non-existent at ground level.
The rule of thumb is that total UV energy at 33000 feet is about double that at sea level. But a lot of reactions in the skin are stepwise - that is nothing happens until you reach a threshold. Hence the actual impact on health at 35000 feet can be quite devastating even if you are wearing your NOIRs all the time. (It is a bit like at ground level - when the UV index is 10 - extreme - the tissue damage done is ten times the damage when the UV Index is 5)
I've found that travelling at night is about the only solution. Even when I have finished Phase 2 and Phase 3 I would be reluctant to going back to travelling during the day especially at latitudes below 45 degrees (which is of course half of the planet!)
Robert Townsend
Jillian wrote:
When you travel by plane, you may want to consider calling the airlines in advance and arrange wheelchair assistance. If you need it they'll meet you when you get to the airport and push you all around, to the ticket counter, to the plane, on the plane, off the plane, to connecting flight(s), etc. It's a wonderful service that has always been GLADLY performed for me or my room-mate.
JRFoutin: suggestions to minimize MP and dosing issues, even while driving:
READY ACCESS--Within arm's reach have water bottle, pill case (72 hours minimum load), alarm (vibrate or sound modes acceptable for your workplace). Be sure you can open pill case easily with one hand. If you forgot to break or can't take it before a commute, pop Benicar in half for better absorption with one hand by pressing between top of boy scout fingers and thumb (Sept. long day driving to next state and back with few stops learned these tricks).
Prepare 25mg Mino capsules for ahead of time. 25mg good for controlling herx, too. Mino capsules feel different than benicar hard oval pills, especially if you use large, easy-load gel caps for "the other 1/2" of 50mg mino.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19445 |
| Status: |
Online
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Posted: Sat May 20th, 2006 04:28 |
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(filelink)
Can I go on a Cruise?
While a cruise isnt recommended whilst on MP, there may be a way if you really want to make it work.
You have to be really determined to be diligent about light avoidance on a cruise. Either that - or be so ill you must stay in bed in the daytime.
One determining factor would be how supportive of the MP your traveling companions are.
They may be thrilled that you can just take some sort of vacation together.
Folks also need to know that they need to pass on the shore excursions - which means they may be one of few people who remain on the ship when they are in port.
Exposure to the sun/light will make you feel worse...
so you can ...
Enjoy the comfort of the darkened cabin while traveling companions find activities to occupy themselves during the day.
Then when the sun is down, you may wish to go out for dinner and light entertainment and perhaps socialising.
The opportunity to rest during each day and then enjoy the evening is worth giving up the ports of call and sunny events on deck.
You and your traveling companion/s need to understand the limitations to be able to spend a cruise trip this way.
see Tools to check:
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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