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John McDonald
Administrator
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Posted: Mon Sep 1st, 2008 22:12 |
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Knochen said
I had to take a short break to clear one abx from my system before starting a new combo, I was in rotten neural shape for about 3 weeks! I had been hoping for a break by reducing the abx, but if anything, I was just in a steady state of badness.
I've had that experience. I am attempting to take a break right now, this month of September, my first in 2 years. I so realize that I may not get it. Stopping the MP is like leaving a moving car; it takes careful attention and a little luck. This time I will try gradually reducing my abx dose whilst staying on Benicar q6h and hopefully I will have a soft landing. I intend to reduce the Mino last of all. But if my immune system is in gear I may be scrambling to get back to the level of herxing that I currently, uh, er, enjoy.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Knochen
Advocate
| Joined: | Thu Feb 23rd, 2006 |
| Location: | USA |
| Posts: | 358 |
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Posted: Mon Sep 1st, 2008 22:44 |
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If it's any consolation, by the end of 3 weeks, it did seem to be settling down a bit to a more tolerable level. Maybe it needs to reach a certain equilibrium somehow.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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John McDonald
Administrator
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Posted: Mon Sep 1st, 2008 22:54 |
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| Last year I had a runaway herx including lots of neuro-herx during and after a 10-day biz trip to Tokyo. I don't recall how long it took to settle down when I got back but I think it was 2 or 3 weeks total. I had conflicting advice about wether to add antibiotic or to do without altogether and I wasn't sure. Either tactic might work. So I did without altogether and gutted it out for some days and eventually it settled down. I told my colleagues that jet lag, foreign food and my medical protocol weren't getting along and while not exactly true, that seemed to be enough explanation. Then again, how do you read the vitamin D food labels in Hiragana? And try being entertained by well meaning reps in Tokyo for a week without eating ANY seafood. On my own I could opt for noodles but my hosts just couldn't understand how fish isn't food for me. Well, and they do fish so well it was hard for me to understand a few times as well. I might have had a foreign food problem. The jet lag didn't contribute but I'm sure it didn't make things easier either. Fortunately I haven't been abroad this year. At the rate I am improving I don't think next year will be a problem.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Deb Grabetz
Advocate
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Posted: Mon Sep 1st, 2008 23:06 |
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Hi John,
Your neuro herxing is giving me some food for thought here! I read early on into the MP, how many previous symptoms, prior to MP, may surface. I was hoping to escape the neuro stuff, but you've got me wondering! My neurosarc was severe many, many years ago. I mean stuff like loss of balance, dizziness 24/7 for over five years, tremors, sound sensitivity, plugged ears, rocking sensation, light etc...some symptoms stayed, loss of vision (improving!!!!), light sensitivity, brain fog etc...So far, I've only experienced a couple of times where my brain felt like it took a spin on its axle...and light sensitive and foggy of course. It will be interesting for me to see what happens in a few months as I near the level of protocol you are at! Well, should I thank you for the fair warning???!!!! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Aunt Diana
Member in Phase 3
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Posted: Tue Sep 2nd, 2008 02:47 |
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In my experience, my neuro herxes have not included dizziness, or balance issues...even though vertigo and balance problems were some of my most prevalent symptoms pre MP.
My neuro herxes are more subtle and come in the form of personality changes....irritability, anger, depression, bad choices, lethargy and complete lack of motivation. I find them very hard to identify. It is easy to know if you are dizzy or off balance. It is impossible to know you are being a jerk and that your thinking is all wrong. I am so thankful that my husband is such a smart man and can realize what is happening and remind me.
This is what makes these neuro herxes so hard to handle. I think I'm going to try a page out of Knochen's playbook and ramp up to see what happens. It's probably time.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, advil p/n, darvoocett p/n, lorazapam, ambien, benedryl, zantac, magnesium, colase, Noirs, cover-up or avoid sun, house <30l
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Deb Grabetz
Advocate
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Posted: Tue Sep 2nd, 2008 12:22 |
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Hi Diana,
So, maybe it's possible that the healing comes in the neuro responses that you mention, as I surely suffer with those. Especially the lack of motivation. I will go completely flat on some days and struggle to get simple tasks done. It can be so frustrating. I try to focus on the fact that there is healing going on--that keeps me grounded. I am very fortunate that my husband sounds similar to yours-- he recognizes my many shortcomings as having to do with my illness and has often been the one to tell me to get some rest--
As each month passes though, I see many day where I'm managing so much mentally, that I have been unable to do for some time. I love those days--they remind me how much I needed the MP!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Posted: Tue Sep 2nd, 2008 16:34 |
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I actually find the "no motivation" days to be a relief, as I have virtually no energy and so that IP matches what my body is capable of. I can have no motivation and still feel joyous.
What I really dislike is when I feel totally flat affect, which of course is naturally accompanied by no motivation. Flat affect is worse than despair IP as far as I am concerned.
Calire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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cwylie1
Member in Phase 2
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Posted: Fri Oct 3rd, 2008 04:09 |
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OMG! The no motivation days! I have been fighting that the past few days, and I need to get packed up for a weekend flight to Phoenix to visit my son. Speaking of which, any suggestions for flying? I heard the IR is so much more up in the plane than experienced on land.
Thx,
Carol 
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Fri Oct 3rd, 2008 04:56 |
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I do have a couple of suggestions.
Call the airline and ask to speak to the person in charge of ADA accommodations.
(1) Request a seat in the front row and ask that all windows be kept shut within so many rows of you. If you give them enough of an advance notice, they ought to be able to inform folk about those restrictions for those rows and let them opt for other seats if looking out the window is important. It seems to me that that might cut down on some of your exposure.
(2) Also, if you have a layover and where you will be sitting has a lot of light exposure, locate a restaurant without windows and then ask the clerk to contact the restaurant to tell you when your flight is boarding. You can let the ADA person know that you will need that accommodation as well if the seating area has natural light or overhead light that you cannot tolerate. Make it clear that they will be responsible for your making any flight connection as a result of their failing to contact you in the place where you will be hiding out from the sun.
I've had to ask for accommodation before (for chemical sensitivities) and where possible, the airlines work it out...you just have to be friendly and insistent (at least that has been my experience).
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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cwylie1
Member in Phase 2
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Posted: Fri Oct 3rd, 2008 04:59 |
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Thanks eClaire,
I will ask about the seating when I get there in the morning. I did not reserve seats d/t the add'l cost so will see what they have available. Keep your fingers crossed for me! Thx,
Carol
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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John McDonald
Administrator
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Posted: Fri Oct 3rd, 2008 17:10 |
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A couple or few years ago I recall our own TM describing his flying strategy. If memory serves he wore a hooded sweatshirt and his NOIR equivalents. He took a window seat and promptly closed the shade. I think I recall that he also nibbled a few M&Ms along the way by way of consolation. Flying is hard when you are well. The cabin pressue is lower than sea level, the air is rich with ozone, in the day time the cabin is awash in UV and if you are on a major carrier the staff may be surly. The M&Ms might be the most important strategy. Plan on down time when you arrive.
Good luck. -john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Deb Grabetz
Advocate
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Posted: Sat Oct 4th, 2008 13:38 |
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Just an FYI from Flight Attendant Deb--- During take-off and landing your flight attendants may not allow your window shade to be pulled down-- It is a safety violation. Having the shades up allows visibility to alert the crew of any unusual circumstances during take-off/landing---along with visibility in the event of an emergency. Just depends on how strict your crew is about enforcing. I've seen and heard many FA's who do not enforce and THAT scares me more than the window shades being up during that short time! Evening flights also require turning on all interior cabin lights during the final walk through, prior to landing, to *awaken* passengers in the event of an emergency during landing, so be prepared for that *burst* of light.
I've seen passengers completely cover themselves up, from head to toe with a blanket during flight. Since most airlines no longer offer blankets you may also want to consider bringing a dark blanket and covering up! 
Gosh, I miss my job...
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Alayne
Member in Phase 3
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Posted: Sat Oct 4th, 2008 16:24 |
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Whenever I fly, I choose a window seat on the side of the plane where the sun will be strongest. (Depends on the time of day and direction.) Then I board early and close my window and the one in front of me and behind me. Then cross my fingers.
Peopls are ususually accomodating when I ask them politely to keep the shades down most of the time - they only have to look at my hat, glasses, and red eyes if I lift the glasses. I also snatch a few pillows along the way to the seat. They're great for propping up against seats to block sun.
If the sun's really bright and the plane's rather narrow (meaning you'll get a lot of light from the other side), use a dark blanket to cover yourself up with . A shawl over the head and face doesn't look too bad, although men might beg to differ. 
Sometimes sitting in the very back row (even though the seats don't recline much, is the best option because you're only dealing with light ahead of you, not behind. Granted, the bathrooms are right there too, so it can get a little hectic at times. I tend to lie back and put a big hat over my face so I don't see who's coming out of the bathroom.
I'm going to try sitting at the front though and ask about the airlines allowing those windows to be closed. After that, I'll try to start booking my flights for the evening - much better, if available.
Personally, I think it would be great if we call all have a flying suitl You know, something silver, loose, with earphones and music, that would guard us from all unwantted UV rays and weird people bothering us. I think we should have our own section if more than two such people are on a fliight
The airlines would I'm sure jump on this opportunity to make our lives easier. HAHAHAHAHA.
Lots of zinc oxide, and as TM and John put it, a little bag of M&Ms does wonders.
Really looking forward to my next flight.
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ME/CFS/FM Sick 25+yrs 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:Loraz/Ambien /MThis/Calc/Mag/Lysine
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cwylie1
Member in Phase 2
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Posted: Tue Oct 7th, 2008 06:20 |
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Thanks everybody! I did get a window seat both ways. Simply shut both windows and had no trouble! Had a seat between me and another passenger on the way out and no one in my row on the way back. Very nice!!! Quiet, dark. Wore my 07 Noirs, jacket on and off (depending on whether I was having a hot flash or not.. ). The flights were pretty uneventful. alayne, I think those suits sound like a great idea!!! lol I can just imagine a group of us going somewhere together on a flight! woo hoo!!!!
Went to the Grand Canyon. It rained late morning while we ate and watched the IMAX movie but stopped raining so we were able to see the canyon in some good light conditions. Other than not having a lot of physical strength for walking far, I felt good. Covered up with jacket, sweatshirt and hat, the wind kept blowing my hat off!!! Really, the only times I felt affected by light was inside at the Target store and sitting at a coffee shop. I wore my Noirs all the time.
I have had a few days this past week when, it seems, the lights aren't bothering me much at all. I still keep my noirs on at work and outside for sure, but sometimes I have them off for a bit and am okay.
Thanks for all the ideas and suggestions! You guys (and gals) are really great!
Carol
(Deb, thanks for all the cool smileys. I have a folder full of them now!! )
Last edited on Tue Oct 7th, 2008 06:22 by cwylie1
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Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
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Pipistrelle
Member in Phase 2
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Posted: Sun Nov 23rd, 2008 14:18 |
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I work in a hospital (patient information and support role). The hospital are not happy with my office being dimmed to 30 lux on health and safety grounds ( I am the only occupant) - they have an issue with visiting colleagues being at risk of "falling over the desk". They say that the contrast in lighting between the hall outside and my room is a hazard.
The clinic room I use to see patients is on the sunny side of the building and I have asked for vertical blinds to be installed - again they don't like this - h & s are saying it may create a hazard for patients unless the room is brightly lit with the ceiling fluorescent lighting on, even on sunny days - h & s say to fulfill their legal duty to provide a brightly lit and safe environment. I have requested incandescent light on a dimmer instead of the fluorescent strip lights which are like kryptonite to me, and have said that I don't need 30 lux to see patients but just some way of stopping full-on sunshine, which as the rooms are south-facing, persists all day. And even here in Scotland we do get sunny days!
I've also been told it is a hazard to ask for shades to be used on home visits (I would only ask if the sun were directly coming in and flooding the room - and only to stop it to some extent) but again the h & s bods are not happy with this, in case anyone in the room were to trip over, injure themselves and sue the health authority. It seems using common sense is not an option these days!
So at present I am embargoed from patient contact (except by telephone) and there is to be a meeting with an occupational health doctor, me, two hospital managers and my line manager on Thursday.
Unfortunately brain fog has rolled back in and I can't think how to persuade these people that I simply require common sense adjustments.... have offered the use of my light meter and have also pointed out that a neighbouring dept in the hospital has vertical blinds in every room, including clinic rooms.....
Any thoughts would be very welcome on how to persuade these people that my job is do-able, or info on how MP folks with client contact have adjusted working conditions successfully, I would be very grateful.
Thanks
Morag
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Sarc lungs, uveitis '90 dx '94, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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Deb Grabetz
Advocate
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Posted: Sun Nov 23rd, 2008 15:50 |
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Good Morning Morag,
BTW, what's the weather like in the UK? It is down in the 20's here today in Michigan...sunny...
Not being familiar with the laws protecting employees in the workplace in the UK, could you fill us in on that aspect? Michigan disability laws require employers to make reasonable accomodations for a disability. Your needs would fall under that category as they affect your overall health and response to your treatment choice of the MP.
Is it allowable to wear a hat or visor. It would be fairly easy to shield your eyes in this way, if allowed?
I know for myself, years ago when I was working in a brightly lit, full glass curtainwall office, that I had the fluorescent bulbs pulled from above my desk. I did not at the time understand the connection of my photosensitivity and the fact that I had Th1, but I knew the lights were incredibly uncomfortable, irritating and caused me fatigue.
For me, when I return to work, I will not be able to wear my NoIR's which will be a problem. It is stated in our employee handbook that *sunglasses* are not allowed. Now this may be something that my doctor can help me with to at least allow me to wear within the airport terminals. I think it will be worth trying to get around.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Markt9452
Member in Phase 3
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Posted: Sun Nov 23rd, 2008 23:12 |
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So at present I am embargoed from patient contact (except by telephone) and there is to be a meeting with an occupational health doctor, me, two hospital managers and my line manager on Thursday.
If I had to go through all that again I would hire a lawyer and let them deal with it. When it happened to me I was too brain fogged to deal with all the legal stuff and it didn't work out so good.
Mark
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Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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John McDonald
Administrator
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Posted: Sun Nov 23rd, 2008 23:18 |
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Could you ask what lux they might find acceptable? Perhaps if you acknowledge their patient and "others" safety concerns then the might be mollified and may bend a bit.
-john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Offline
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Posted: Sun Nov 23rd, 2008 23:31 |
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I agree. Depending on the personnel and disability laws of your state it might be wise to ask to have counsel present and then go about finding a solicitor who can advise you in this matter.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Pipistrelle
Member in Phase 2
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Posted: Mon Nov 24th, 2008 00:09 |
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Hi Deb, Mark and John
Deb - here in the UK we have the Disability Discrimination Act, which is similar to the ADA. I think the authorities are just flummoxed because they have never had to consider light related adjustments before. I prefer to keep glasses on but lose the hat when interviewing clients, and do the eye contact thing (take off the NoIRs momentarily) at appropriate points during the meeting, to connect with the person I am helping. Your employer regulations re dark glasses surely can't apply to glasses needed for medical not cosmetic reasons?
Mark, sounds like you had a rough time. I am hoping in my case there is sufficient goodwill for everyone to find a win-win solution, and so far I don't have the feeling that my job is in jeopardy. This is my eighth year in the post, and I would like to continue. I do find the situation frustrating and I am trying not to get too anxious about it, nor to take it personally - health & safety is a big issue on both sides.
John, you are right re allaying management concerns and I will certainly be saying that patient safety is paramount, and still achievable with the adjustments I'm asking for. Good point about asking them to state what lux level they deem acceptable.
I hope there is a sense of pragmatism and that a balance can be found that works for everybody.
I'll let you know how it goes.
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Sarc lungs, uveitis '90 dx '94, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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