 |
| Author | Post |
|---|
expate
Member
|
Posted: Mon Apr 21st, 2008 03:02 |
|
Side note. My 23 year old son called earlier in the day. He told me he was sunburned. Well, with all the reading I've been doing here, I kind of freaked and told him it wasn't good, etc. He told me to quit being a mom, essentially.
Later he calls me. He's got fever. He's anxious, panicky (the panic thing is something he has experienced before). And once I get him talking I find he's worried he's going to have a heart attack because his heart is racing.
I tried in brief to tell him he's ok for tonight, but the underlying cause of this reaction to overexposure to the sun. Well, he's my son - not particularly inclined to listen to me, but I have begun the dialogue with him.
Input? Do you (open to anyone reading) think this is an indication he should be tested for D levels?
Thanks,
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
expate
Member
|
Posted: Mon Apr 21st, 2008 03:15 |
|
Last edited on Mon Apr 21st, 2008 12:46 by expate
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Mon Apr 21st, 2008 15:29 |
|
Odette,
I blow dry my hair sometimes, sometimes I don't. I have several hats, one is soft and doesn't put a ledge in my do around the brim line when the hat is removed. Scarves are kinder to hair and usually enough if you are not out long.
Per your son, everyone must consider the MP for themselves. Your son is old enough to look at the warning signs. As a mom of adult kids, I have found that even if I am wise beyond lifetimes, they still don't want to hear it from a parent unless they decide to ask. Unfortunately, I can't even claim that I am wise beyond lifetimes either. I am human and the kids know it too by now (wink and smile).
Sunburn and heat stroke are serious stuff. Your son and his doctor are responsible for his medical care. If he has a change of heart along with all that racing at this time, you can always point him to this site to ask his own questions, as adults do best when they are their own agents of change and decision.
Best to you and yours Odette--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
|
expate
Member
|
Posted: Mon Apr 21st, 2008 18:58 |
|
Wise words. And thank you for the hair advice. 
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
| Status: |
Offline
|
|
Posted: Mon Apr 21st, 2008 19:00 |
|
Odette,
It is difficult to explain to someone about getting sun when everything around them says it is good....just the caveat about blocking UV rays.
I was bitten by a tick in the early Spring of 1958 in Hammond, LA taking care of my yard just one block off of college campus. A few days later, I had the only "flu" of anyone on campus. It passed in a few days, and I went about my college life per usual. I then went sailboating in August on Lake Pontchartrain all day wearing only a swimsuit. My temperature shot to 103.8 degrees that evening, and I had chills that would not stop. I remember feeling miserable!!! I wasn't feeling great for a number of days afterwards. But nothing else happened until the Fall of '64 when I came down with crushing fatique that stayed around for about six weeks. I kept having to call in on sick list. The doctor that I visited said that I probably had "mono"... that it should pass. It seemed to do so.
Then, starting in the Winter of '74, I started sailboating in the Carribbean for a week to ten days at a time. I was organizing bareboat experiences among my working cohorts. By the second day down there, I felt miserable, and had to keep reminding myself that "I am having fun!" Then, when I returned north, it took me a week to ten days to recover from the miserable feeling. It would also happen whenever I went sunbathing on the beaches of Hawaii.
I realize after learning of the MP, that that episode with the sun in '58 was my first hormone flare, and so was all of the following episodes from sailboating. I never seemed to have the energy that my fellow cohorts did at work, but somehow I managed, until the slow progression/proliferation of the bacterial load got to me when I was 63 with the awful pain in the right forearm due to a pinched nerve in my cervical spine...... spurious bone growth. Probably, from a too high 125D hormone that probably did fluctuate. The doctors called it degenerative bone disease, but had no clue as to why it happened(s).
The tick bite evidently gave me a new pleomorphic bacteria that upset my bacterial equilibrium within my body. I can now see after much thought that the Th1 inflammation was running thoughout my ancestors. For a number of years after getting a second tick bite here in Missouri, I thought that I had "Lyme disease". I did test Positive for SOME titers for borrelia on a Western blot test, and the LLMD that I was seeing did Dx me with "Lyme", in the chronic stage. However, I see now that chronic "Lyme" is really "Th1 inflammation"... one of many pleomorphic bacteria causing a soup or stew of symptoms.
Hopefully, your son will listen to you, and learn from you. I, too, was only twenty-three when I had my first sun-induced hormone flare. I sure wish that I could have known about "Th1 inflammation" and the MP, then. Oh! I could have saved myself soooo much pain.
And on another thought... my son is 43 years old, and a Down's syndrome person. Modern era microbiologist know that "germs" participate in the "lateral transfer" of DNA material, meaning transfer between what is called species...very likely to human cells, too. All the medical profession knows about D.S. is that the person has an extra chromosome. They do not know why! IMO, it might be because I had the Th1 inflammation and was chocked full of pleomorphic bacteria. My son has been tested this past Thanksgiving time, and found to be Positive for the Th1 inflammation. Yet, his doctor and his Mom insist that he is healthy. But I saw some symptoms, starting with cataracts that he should not have had at his age.
Please, Odette's Son, get your D's tested.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
____________________
Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
|
expate
Member
|
Posted: Tue Apr 22nd, 2008 02:57 |
|
Thanks George. I will get there with him eventually. And with my daughter as well. It begins to dawn on me how obvious this is once you know. My husband does not suffer. The rest of us have always thought him a different species.  I'm sure I know why now.
Cheers,
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
Dr Trevor Marshall
Research Team
|
Posted: Tue Apr 22nd, 2008 08:46 |
|
Without wanting to sound too dramatic, the first sign many males have of extensive Th1 infection is a stroke or a heart attack. Th1-induced Cardiovascular Disease frequently afflicts men, women tend to suffer from other th1 ailments.
(ps: Women get cardiovascular disease too, but it is the most common presentation of Th1 in men).
(pps: The Th1 bacteria spread in families. It is rare for any member to be totally spared.)
|
expate
Member
|
Posted: Wed Apr 23rd, 2008 00:43 |
|
OK, as if I weren't a worrier already.  But seriously, thanks for the input. I'll try to be ever so gently more persuasive with my children without seeming on the outer edges of sanity.
But do you know how hard it is to persuade a 23 year old (I'll leave male out of it, although...) who has graduated college last year, left our small-ish town of Norman to return to our home town of New Orleans, and is working 12 hour days on a film production to stop and take a couple years out of his life to do this? It demands not only a "delay" in your life [more or less depending on your situation], but a comittment to assume a huge responsibility in your own healing. I, at 50, "get it". My kids at 23 and 18 are dealing with so many other issues as well.
OK, that was gripey. Attitude readjustment. Just wishing I could recall both my kiddos and have complete control over them to make them do this. Did I mention that I'm also suffering from empty nest syndrome?
Cheers,
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
expate
Member
|
Posted: Wed Apr 23rd, 2008 03:43 |
|
Wow, a sign from above. The long, convoluted, involved, blah, blah, blah response I just wrote disappeared into cyberspace.
The gist? I expect Dr. Marshall and all the others here who have comitted to this study have impulses analogous to mine as a parent. Would that I could get my kids aboard. Well, multiply that for how you all must feel about helping all those out there for whom you know this is the way.
So, my previous, almost post was more eloquent and to the point, but thanks for all the input. What goes around comes around. I hope to help my children through my experience, but I know I am helping those willing to listen (because I do talk  ).
Cheers,
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
| Status: |
Offline
|
|
Posted: Wed Apr 23rd, 2008 03:51 |
|
Odette,
Wishing you, and all, wellness!!!
Dark Vader...aka, George
see Dave's questions
healthy, fit, and feel fine-eligible?
____________________
Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
|
Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 221 |
| Status: |
Online
|
|
Posted: Wed Apr 23rd, 2008 12:24 |
|
I think we all look around at the sea of Th1 surging over the world and get an urge to come to the rescue. It's natural. But on the other hand, when you are in an aircraft and the cabin has depressurized, the rule is: "Put on your own oxygen mask first - you can't save anybody else if you don't save yourself first"
I think it's the same with the MP. Until the MP is more widely recognized and accepted by the mainstream, there are only a select few who will make the leap it requires. We can talk until we are blue in the face, but the best persuasion will come from someone who has been down the road and has results to show for it. So... save yourself first, then get on your white charger and go tilting at those windmills.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
|
JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Wed Apr 23rd, 2008 14:55 |
|
I'm in agreement with Knochen, based on my "mom" experience and family experience. The MP requires not only capturing concepts that are not common knowledge even with medical professionals, but also taking action in an uncommon way. Not everyone is prepared to do that.
I spent a lot of energy early on in agony for family members who suffered terribly with their Th1 pea soup version once I was able to see it. I still agonize to a degree about their plight because I love them, but I can only make my own decisions. My children are adults and have their own accountability/responsibility problem-solving to work through.
I have also watched one adult sibling die and was silent per her request after she had made her decision -- having heard the best minds on the planet make a better presentation than I initially had known when I started. Later this week, I will present the case with calmness and sincerity to another sibling who was recently hospitalized with simlar symptoms to my first hospitalization/sarc dx, but his choice after my short discussion with paper, will/must be his own.
Dr Marshall is correct. I can't go anywhere on my family tree without seeing the Th1 plague in old and young alike. But if they cannot or will not hear my voice now for whatever reason, then accepting that is the only rational thing to do so I can continue to get well, and so they might accept it later.
I must take the long road to get well and benefit from that. I must contribute my part to the proof-of-concept cumulative evidence package that others before and growing ranks now contribute, so the future of my line and that of other families will have that evidence to help mankind at a later date.
I take heart that those of my family that survive into the next level of public awareness/acceptance of this opportunity will have an illustration that stands with them and for them when they can accept and get well.
Here's to choosing well, and getting well--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
|
expate
Member
|
Posted: Mon Apr 28th, 2008 18:35 |
|
Good analogy, Knochen, re the oxygen mask.
I ordered my NoIR's today. I've decided to wait until July 16th to start the protocol because of two long planned vacations. I will be careful about food and diet but not strict until I can start the medications. I have to say that I feel like I am already feeling some effects of having stopped vitamin supplementaion, changed my diet to be almost free of D-foods, and been good about avoiding light outdoors (hat or umbrella, long sleeves, regular sunglasses). My shoulder pain is back for no apparent reason (no gardening, weights, etc.), a touch of queaziness, and some strange things like a bolt of pain though one ankle while lying asleep (it woke me up) that dissipated quickly. Who knows?
Anyhow, I can't wait to start the MP.
And you're right, Janet, it's amazing to me how resistant people are to even looking in to this. One woman who works in my office, I KNOW should try this, but seeing how she hasn't taken care of herself with the onset of diabetes, I can't imagine her doing this. Maybe just my going through it and getting better will be a help.
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
expate
Member
|
Posted: Mon Apr 28th, 2008 18:40 |
|
Question: I intend to sometimes use an umbrella/parasol instead of a hat. This will show how little I understand optics, but here goes...
I know that whatever "brelly" I get should be totally (as much as possible) opaque. But would it be best to have the outside be white (to reflect heat?) and black underneath so no light gets reflected...
Or black on the outside to block more light and white underneath to be "cooler"...
Or all black...
Or something else altogether?
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
Offline
|
|
Posted: Mon Apr 28th, 2008 18:45 |
|
Odette,
At a recent parade my son was in, I stood under a black umbrella and had lots of me covered and shaded that wouldn't have if I had worn just a hat.
But I think you need to know that an umbrella alone -- of any color -- is not going to do the job of coverage, and you should plan to avoid outdoor situations, even well covered, until you've had several years of reduced lights to recover.
The Effect of Sunlight/daylight and Bright Lights
Best to you Odette--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
|
Julia
Advocate (on leave)
|
Posted: Mon Apr 28th, 2008 18:56 |
|
Odette,
I think this question is perhaps rather academic, given that I've never seen an umbrella that's white on top and black underneath...
I hope you're not going to be in sunlight long enough for it to matter what colour your umbrella is! A big sunhat would cast a denser shadow, but then you're getting more reflected light from all around you.
If your daylight outing is essential, wear your NoIRs, use zinc oxide sunscreen on your face and cover everything else. Then see how you get on. If you get a 'light flare' of symptoms, you'll know you need to be more cautious.
Julia 
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
|
Aunt Diana
Advocate
| Joined: | Fri Oct 26th, 2007 |
| Location: | |
| Posts: | 42 |
| Status: |
Offline
|
|
Posted: Mon Apr 28th, 2008 19:51 |
|
Odette,
I have a scarf that I bought on coolibar.com that is like a hood but wraps around my neck like a scarf.....it is sort of like a burka but more lightweight and in a pretty color. I find this easier to use than a hat and it protects my neck area as well. I can also wrap it up around my face like a burka. I've had several compliments on it....not to mention some strange looks as well.
It also does a good job of covering my glands when they get puffed out.
(I'm not sure if they are still selling them).
For some reason I like it more than the hats I have tried and it seems to do the job.
|
expate
Member
|
Posted: Mon Apr 28th, 2008 21:09 |
|
*is getting a clearer picture*
Thanks for all the input.
Janet, thanks for the "dose" of reality (how many mgs should I be on? ).
Julia, my umbrella question actually isn't academic. Because I live in Oklahoma and walk to work (10 to 15 minutes), I'm trying to figure the best way to do that. I sew (and used to make costumes for the ballet ), so I can modify any umbrella I get. Plus, being from New Orleans where we decorate umbrellas to second line with, well, I've seen a lot of extra-ordinary umbrellas.
And Diana, I'll look that up. I actually had a piece of the same idea that I loved and lost from a clothing store called Units.
I think, once I start the MP, I'll have to change my "name" from Expate to Garbo. 
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
arhayw
Member
|
Posted: Mon Apr 28th, 2008 21:48 |
|
Hi Odette!
I use an umbrella as an extra measure when exposure is unavoidable. The ones from Coolibar work well and I like the fact that they not only are coated on the outside with deflective titanium, but they also have air vents for cooling.
Renee
____________________
CFS/FM/autoimmune hypothyroid/ began MP July'04
|
expate
Member
|
Posted: Tue Apr 29th, 2008 03:19 |
|
Thanks, Renee.
Odette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
|
Current time is 22:14 | Page:   1 2 3 4 5 6 7 ...   |
|
|
|
|
