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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1798 |
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Posted: Fri Apr 25th, 2008 08:51 |
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I was recently on a trip where I was outside or in a car for more than 5 hours each day for several days in a row. Based on what I have learned from recent experiences, I could not have done at all well if I had only used one coat of Kabana on my face and neck (see above post). By wearing my hat and NoIR sunglasses and my gloves a lot of the time and the 4 coats of Kabana on my face, neck and hands, I did fine, however. This may not be true for everyone, as some are a lot more sensitive. People who are sicker should be especially careful.
But anyway, just thought I'd let you all know that I am someone who at this time, with a single coat of zinc oxide or keto cream, could not even have made it for a half a day on this trip without paying heavily afterwards, but with this new strategy, I had a great trip.
I had to wear my hat and glasses all the time, though. I found out Kabana has a zinc oxide containing sunscreen that I will test. I doubt it would allow one to go hat free much, but might allow it for 30 minutes or so without a hat. I'll report in a few weeks when I have tested it. I know one day on my trip, I felt I really could have used a little break from the hat 
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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schesche
inactive member
| Joined: | Sat Oct 13th, 2007 |
| Location: | Graz, Austria |
| Posts: | 154 |
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Posted: Wed May 7th, 2008 02:34 |
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hi Joyce
thank you for your report on the sunscreen issue--
i think i will try the double dosing of zink oxide and will try to find a better product...maybe this will really help me get through some of the exposure
although i reall yspend 7 days a week in the house..but there are things i will need to do soon and i am struggliung to find a way to do them--
i just think it is sad to see that even after 4 years you are still so light sensitive,
it seems to me that more people with lyme cfs take longer than the sarc guys?
all the best chris
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CFS, Lyme/neuro,joint pain,brain fog, insomnia,rage 125D56, MP 10/07, Triazep, zolpid, bvi, NoIRs, low lux home, lite exp. r/t work, covered up, 25D16
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1798 |
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Posted: Wed May 7th, 2008 02:56 |
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It is interesting that I went through a period between in which I was less sun sensitive and then the sensitivity reaction came back in a different, delayed form that was harder to detect at first --as I describe in the Addendum of the Sunscreen Overview (Updated Feb. 24, 2008). But I don't find my sun sensitivity limiting my activity if I use certain precautions as I have described with regard to sunscreen and hat, glasses, long sleeves etc...
I spent many years bedridden and disabled, so it isn't surprising it is taking a while for me (and I have taken a few breaks and gone somewhat slower too, than some people). We don't really have adequate data yet to say that it takes CFS longer than other diagnoses, so I don't really know if that is the case or just the perception some have.
I have posted a bit more about using more than one layer of sunscreen (April 30th post):
SUNSCREEN questions & suggestions - page 3
Joyce Waterhouse
Last edited on Wed May 7th, 2008 03:09 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1798 |
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Posted: Wed Nov 12th, 2008 17:58 |
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Nov. 12, 2008
It has been so long since I posted, I thought I should make a brief update here. At the moment, I'm on the Phase Two antibiotics, taking a break from the most powerful Phase Three combo, which I find difficult to increase (I have not yet reached near the full dosages on it). Actually, I never reached the full dosage on the Phase Two antibiotics either and think I will try to do that before going back to the Phase Three ones. I have needed to go considerably slower than others for a variety of reasons. But everyone is different and it is O.K. if some don't need as much antibiotic and thus appear to be going slower -- its results that count and I'm happy with my progress. I figure my immune system is just taking on more of the bacterial killing. Since my 25-D is very low and has been for quite a while, that might be partly why even low levels of antibiotics are quite powerful for me.
I have spent some time on several other combinations, but have not reached full dosage on the others (except Phase One and modified Phase Two). I have been on the MP nearly 4 years, though it might be considered more like 3 1/2, since I have taken several breaks from antibiotics. There are other times when I have had to reduce the antibiotics quite a lot so for a few weeks so that I could work on a project or prepare for a trip (eg., go to Porto, Portugal for the conference on Autoimmune diseases).
I find I can't get by without some hormones, as I am menopausal now. The night sweats, poor sleep and depression are too much for me to tolerate and still tolerate any significant level of IP. I do not find any difference in my level of IP or its nature, when I am on hormones and when I'm not. In any case, I have less hormone in my body than a few years ago, according to all the signs, just due to less of my own production due to my greater age, even with the supplemental hormones.
I went for the first couple years of the MP where about one third of the time I was taking birth control pills to regulate my period and the rest of the time I wasn't and I saw no significant difference in immunopathology, either in its nature or intensity. So, I don't think it is a matter of the the supplemental ones being particularly different than my natural ones.
I know it is recommended that one wean HRT if one can and I hope to be able to someday, but I don't think that is feasible at this stage of illness for me, and I think I can even progress more rapidly with antibiotic increases while on it, than I could while not on it.
On another topic, I used to have a problem with weight loss because of my food allergies and sensitivities and frequent long lasting stomach flus. But for the last couple of years, I have found it quite easy to gain weight unless I'm very careful with my diet -- especially now, since I can eat most foods (whereas before, my food allergies restricted my diet greatly).
In fact, when I'm not careful (like in Portugal), I can very quickly gain weight and then have it take quite a while to lose it. I had stumbled upon a method that did help me lose weight and interestingly, happened to come upon a book that used a very similar method and gave a lot of reasons why it should work (citing research that I have not yet had time to investigate further). I think I may write an article for the SynergyHN newsletter on it sometime (if you are interested, the book is called the Three Hour Diet, by Jorge Cruise).
It does not advocate low carbs, but does advocate not going more than 3 hours without either a small meal or snack. I still think many need low or moderately low carbs, but my own experience with the diet supports his contention that eating more frequently helps keep the body from trying to conserve energy by entering "starvation mode". Going into this starvation mode by waiting too long between eating is thought to be a factor in promoting weight gain -- or keeping one from maintaining after losing weight.
Joyce Waterhouse
PS I stopped the caffeine I was taking (just a 1/4 of a No Dose two or three times a day -- like a cup and a half of coffee). Although I don't think it was doing any harm as far as I could tell, it wasn't doing enough good that I could detect to make me feel it was worth taking. Now and then, I may take a little, if I feel I really need it. I think one may tend to adapt to it if used daily, and so if one is used to it, after a while, it hasn't much effect.
Last edited on Thu Nov 13th, 2008 01:59 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1798 |
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Posted: Thu Sep 17th, 2009 20:50 |
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I have been meaning to do an update for a long time, but have been so busy with writing projects, answering posts and other things that I haven't gotten around to it. Helping gather the data for the Portugal conference, preparing for and going to the conference, writing projects coming out of the conference and miscellaneous things put me rather behind and I'm still catching up on other necessary things.
So, though I'm still too busy to do a proper, thorough update, I will say that I'm still doing fine on the MP and progressing.
I've been on 1/16 to 1/8 Z and full dose mino and clindy most of the time lately.
I'm keeping the IP at a fairly low level.
So, that's all for now about my status - hopefully I will have time to post more later -- and I also want to give an update on my dad (on Benicar alone and doing fine)
I want to put in a pitch for more volunteers to help with the sites. If you are starting to feel more comfortable answering questions here or in curemy, go ahead. Point people to links.
If you answer something and are uncertain and want someone to check your answer, you can email or PM me. Become a moderator -- we really need more volunteers -- those who have been doing it are stretched to the limit. If you are already a moderator, I hope you will try to find time to answer more posts.
Joyce
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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