Re: Re: Thought I would update on the flare and swelling//

[Guest guest]

Darlene,

Thanks so much for all the details.

There certainly is the possibility that oxalates could be a common link in

these problems...There is one study associating oxalates with both COPD and

asthma, but no one else has looked! Most of the articles on oxalates in

the lungs are about aspergillus infections, which may not be relevant, but

we have noticed on our oxalate list that there are people who seem to

secrete oxalates in the lungs, though we haven't yet found a lab that could

test that. In one family, some members with chronic congestion now are

free of that after many months on the low oxalate diet, but their detox

from oxalate involved the lungs, too. If you'll look on my website, there

is s section on COPD and asthma on the research page.

One of the problems wih antibiotics is that they kill our micorbial friends

as well as our microbial enemies. I'll send separately a list of

antibiotics that kill off oxalobacter formigenes that degrades oxalate in

the colon so that we don't absorb oxalate. Most people who develop

diseases related to oxalate do not have sufficient protection from

oxalobacter in the gut because of antibiotics. There are studies on that

but no lab that offers commercial testing.

Has anyone measured your vitamin D (both cholecalciferol and cacitriol) in

all this testing you've had done?

What else are you eating besides the apples and bananas? Have you gotten a

chance to look at www.lowoxalate.info/recipes to see if what you are eating

could be high oxalate?

Because of the people who have said on my list that their fibro got so much

better off high oxalate foods, and because of the information about vitamin

D and pain, I think there is likely to be a link in these two issues that

has not been explored and may be related to the fibro complex of issues

that occur together, including the sleep issues.

I want everybody to go to google and put in " Vitamin D " and pain. You will

be shocked at how many articles there are. If anyone says (and some do)

that fibro could be caused by vitamin D deficiency, then NOBODY with fibro

should be treated medically without checking these vitamin D levels.

Darlene, I bet with all these medical issues going on, you weren't siting

out in the sun much getting that natural vitamin D.

By the way mitral valves can be messed up by oxalate, too. Not all oxalate

issues are dietary...vitamin deficiency can lead to the body making excess

oxalate, particularly vitamin B6 deficiency which happens a lot in people

with gut issues.

At 08:02 AM 3/4/2008, you wrote:

>,

>Gosh, I'm not sure how to answer this. I have had lower body

>extremity swelling for years and we have been getting heart testing,

>etc. etc. (all is well in that area, despite the fact I do have high

>blood pressure that is controlled and obstructive sleep apnea which

>is also controlled with a bipap machine). I was diagnosed as a T2

>diabetic in October 2007 and started on a carb restrictive diet as my

>A1C was only 5.9 (no meds initially). Unfortunately, I suffer from

>COPD (chronic asthma and bronchitis) and winter started early for me,

>despite my maintenance measures of nebulizer treatments, rescue

>inhalers, multiple asthma meds and allergy meds. All my meds have

>been cross-looked at by the pharmacy to make sure no contraindictions.

>

>Anyhow, I was seen by my endo on 1/14, given good news on both the

>cholesterol front (down to a total of 150 w/diet and lipitor, no

>muscle-wasting going on, enzymes all checked out okay; from 287!) and

>told to " keep doing what I was doing, it was working " because my A1c

>was actually down to a 5.8 (non-diabetic) and I had lost weight (12 #

>on their scale, 24 on mine; I trust mine because it is digital and

>has one person using it, me and is calibrated).

>

>Two days later, I saw the rheum and was dx'd with fibro (1/18/08).

>Started on low dose of lyrica (75 mg 2x per day for 2 weeks to see if

>I could tolerate it). I was " punch drunk " the first day or so, but

>all the aches and pains went away and I started feeling human.

>

>The same day, I was dx'ed with bronchitis (COPD flare). Three days

>later I ended up in the hospital and spent the next 9 days in an

>asthma exacerbation where I was pumped full of steroids, on oxygen,

>you name it. Of course, I had break-thru pain which they treated with

>darvocet because I was pretty much chained to the oxygen unless I had

>to go to the restroom; plus had massive amounts of antibiotics going

>in.

>

>I came out 1/29/08, weak and feeling like I'd been run over, and of

>course my sugars were thru the roof so my endo added glucophage while

>I went thru the steroid weaning process (switched from prednisone to

>a dexpak, supposedly better; was switched from lasix to bumex to help

>my kidneys, but the bumex didn't really work). Anyhow, I was done

>with the oral antibiotics from the hospital and had just about

>finished the steroids when I got sick again - back to PCP, more meds,

>more 'roids, more shots. That's when I started noticing that I was

>swellling a little more each day. To the point where on Saturday,

>even though my legs didn't swell until later in the day, the flare

>itself was from the pelvic area down to my toes and felt like I had

>electrical currents running down them.

>

>As for diet - I have been maintaining my carb diet (50 carbs or less

>per meal, 3 meals a day; 15 or therabouts or less per snack, 3 a

>day); the downside to the high sugars is I am only eating maybe 1

>snack per day. As for the fruits - it's apples mainly and one banana.

>I am taking potassium with the lasix (I swapped back to get this

>swelling under control.

>

>Part of the swelling is due to the steroids. They have got to do a

>meds research on me and get me swapped around or something. This shit

>is going to kill me. I honestly have had more flares since coming

>out of the hospital than I did before. Before I was just achey and

>fluey feeling and fatigued. Now I have all that PLUS the pain! Makes

>it hard to take care of the family!

>

>Hope that answered some of your questions. My medical history is a

>wee bit complex (as is most of ours is) and I feel that a lot of my

>conditions probably overlap and exacerbate each other. If they could

>get a good cocktail combo, I'd be a happy woman! They do believe I

>have lower body extremity blockages and I am scheduled to have some

>further testing later this week on that avenue, which could explain

>alot since there is NOTHING wrong with my heart (no PAH, just a

>mitral valve regurg which I am told is common).

>

>Darlene

>

>

> >

> > >Well, we know that I was in horrible fibro flare Saturday so I

>won't

> > >repeat all that jazz. Suffice it to say that I switched my diuretic

> > >back to Lasix (40 mg) on Saturday to attempt to help the swelling.

>I

> > >took 2 on Sunday (have been up to 120 mg so figured 80 was okay),

> > >drank about 1/2 gallon of water or better, stuck with only 1 soft

> > >drink (diet coke) and kept them propped as much as possible.

> > >

> > >By bedtime last night, from the knees down, my legs were bruised

>and

> > >still swollen from whatever is causing them to swell. DH woke me up

> > >this morning around 4 am because my breathing was off so I got up

>and

> > >my swelling is down (I can ALMOST see my ankle bones) ***but*** my

> > >feet are so beyond tender from how swollen they are that it may be

>20

> > >degrees outside (I am not really sure) but flip flops are going to

> > >be " my friend " .

> > >

> > >I will also be babying them today because I know they hurt so bad

>due

> > >to how badly they were swollen. I am staying on the lasix too and

> > >calling the doctor and telling him I made an " executive decision " .

> > >They have GOT to find me something that works, at least until we

>get

> > >the testing for the lower body extremities blockages done. I cannot

> > >put my family through what I went thru this weekend. I was at my

>last

> > >edge of impatience with my kids and DH. All I wanted to do was cry.

> > >I went ahead this morning and took a naproxyn because I know

>there's

> > >still inflammation. For heavens sake, there is still an extra 10

>lbs

> > >of fluid on me somewhere (although I think the steroids are not

> > >helping either - think Tim in " The Santa Clause " and how his

> > >face just poofed up!).

> > >

> > >Anyhow, I wanted to give an update. Thanks to everyone for their

> > >ecards and well wishes and tips. I have them saved and can only

>pray

> > >there won't be a " next time " when I swell so badly it brings on a

> > >fibro flare like that. I'll take the twinges any day!

> > >

> > >As for the Lyrica, I am on a 150 mg dose and haven't noticed any

> > >weight gain. Mine is coming from the extremity swelling, as well as

> > >massive amounts of steroids for my COPD. My doctor is going to have

> > >to find " another way " to keep my lungs open and clear!

> > >

> > >(((Hugs to all; have a great Monday))))

> > >Darlene

> > >

> > >

> >

> >

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>2/25/2008 12:00 AM

> >

>

>

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