How can something that's ruining my life not have a name???

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Postby ToniH » Wed Jun 01, 2011 7:11 am

jimmylegs wrote:okay. good to know h.pylori is not part of the picture.

i hope you can get the zinc test ASAP.

are they going to run a magnesium test? (it's gold for anxiety)


I bought an iron supplement that has magnesium in it, just in case. I think he fails to understand that the reason I'm anxious is because I keep getting worse and nobody can tell me what the hell is wrong with me or how to treat it. I really don't want to become complacent.
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Postby ToniH » Sat Jun 04, 2011 9:01 pm

Latest lab results...

Glucose was marked high, though the nurse told me it looked fine, I suppose because I did not fast. It was 104.

Everything else on my Renal Panel was fine (or normal, at least)

Vitamin D, 25 OH Total: 23 (30-100ng/mL reference)

Iron: 28 (40-175 mcg/dL reference)
So, my iron is lower now than it was at last test.

For the CBC, these numbers were abnormal...

MID: 0.9 high (0.1-0.6)
MCV: 78.6 low (80.0-99.9)
MCH: 26.5 low (27.0-31.0)
RDW: 15.3 high (11.6-13.7)
MPV: 7.4 low (7.8-11.0)
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Re: Vitamin D3 Results

Postby NHE » Sun Jun 05, 2011 1:52 am

ToniH wrote:Latest lab results...

Vitamin D, 25 OH Total: 23 (30-100ng/mL reference)


That's pretty low. Relapse frequency has been found to correlate inversely with vitamin D3 levels. 50-60 ng/mL (125-150 nmol/L) is a good target range. Note, the conversion factor for 25(OH) vitamin D3 ng/mL -> nmol/L = 2.496 post128403.html#p128403

higher 25-OH-D levels were associated with a reduced hazard of relapse. This occurred in a dose-dependent linear fashion, with each 10nmol/l increase in 25-OH-D resulting in up to a 12% reduction in risk of relapse. Clinically, raising 25-OH-D levels by 50nmol/l could halve the hazard of a relapse.


I'm not sure what to say about your other numbers. Perhaps someone else can help with that.


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Postby jimmylegs » Sun Jun 05, 2011 4:13 am

you're right NHE, and i've also seen research suggesting that 130 nmol/L is considered a minimum to minimize risk of certain cancers.

toni i can check back but i suspect all your CBC results are consistent with the low ferritin. try to get your ferritin level up over 100 (i'll check to make sure the units match yours properly)

if you have trouble absorbing vit d3 you may need to supplement zinc. fyi zinc helps stabilize blood sugar (get the glucose into cells, and help insulin work better)
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Postby ToniH » Sun Jun 05, 2011 4:21 pm

jimmylegs wrote:you're right NHE, and i've also seen research suggesting that 130 nmol/L is considered a minimum to minimize risk of certain cancers.

toni i can check back but i suspect all your CBC results are consistent with the low ferritin. try to get your ferritin level up over 100 (i'll check to make sure the units match yours properly)

if you have trouble absorbing vit d3 you may need to supplement zinc. fyi zinc helps stabilize blood sugar (get the glucose into cells, and help insulin work better)


I went and picked up my "prescription" for the zinc serum test, but I have yet to go to the hospital to have it done. I plan on going tomorrow. But I went ahead and purchased a Zinc supplement, along with a vitamin D supplement. I figured that even if my current zinc level is fine, supplementing and having extra won't kill me. I'd give anything to stop the muscle fatigue. I can't brush my teeth or fold a load of towels without my muscles simply giving out.
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Postby jimmylegs » Sun Jun 05, 2011 8:46 pm

re vit d3 and zinc, great! please consider a new iron supplement though, to increase ferritin.

also, there is such thing as too much zinc (and too much anything else for that matter).

interested to hear the results!
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Postby ToniH » Tue Jun 14, 2011 11:35 am

jimmylegs wrote:re vit d3 and zinc, great! please consider a new iron supplement though, to increase ferritin.

also, there is such thing as too much zinc (and too much anything else for that matter).

interested to hear the results!


The results of my zinc serum are in, and the nurse told me my number was 66, which was fine.

According to my health records on my insurance company's website, my doctor submitted another diagnosis of Iron Deficiency Anemia Caused by Chronic Blood Loss.... that's the second time this year. I guess if my zinc is normal, then I'm probably not having a problem absorbing the iron. The question is, shouldn't they be trying to find where this chronic blood loss is coming from?

Anyway, the doctor is writing me a referral to see a neurologist at UAB for a second opinion, since we both agree my other neurologist left something to be desired.

As expected, my cognitive problems have gotten progressively worse, even in the short time since my first post here. I'm afraid I'm having a repeat of the incident last fall at my office, where I developed itchy joints, hives on one arm and itchy bumps on the top of my hand. That incident is what led to the steroid shots, which led to the petechiae that spread all over my body. I experience all of those same symptoms yesterday and the day before, but I just took some benadryl for the itching and conked out on sleeping pills. I'd rather not go back to see the doctor for it, because I'm scared for that rash to spread again.

Speaking of the rash, you guys might remember that it started with a patch on my right knee that had been fine with no problems for many months prior to the steroids. I have another patch on my body, even larger, that I had originally dismissed as a birthmark. Not sure what it is, but it's gotten much bigger. The only difference between it and the characteristics of the one on my knee is that this one (located under my left breast on my ribcage) blanches when I touch it. WTF

Dr. Oz had a guy on his show today who supposedly heals people with prayer, you know, one of those "lay-hands-upon-you and miraculously cure you" doctors. I'm so desperate for answers, that I'd give buy a $95 ticket to see him just because at this point I have nothing to lose.
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Postby jimmylegs » Tue Jun 14, 2011 3:36 pm

this is a classic example of the 'normal' range serving patients poorly.

66: i assume the units were µg/dL.

the conversion factor to µmol/L is 0.153.

66 x 0.153 = 10.098.

the 'normal' range for zinc is 10-20 µmol/L.

so technically yes you are inside the 'normal' range. along with a lot of sick people.

healthy controls in good studies have been found to have zinc levels averaging quite tightly around 18.2 µmol/L.

ms patients have levels averaging in the low teens.

i've posted extensively on the zinc - uric acid connection, and the ms average within the 'normal range' versus the healthy control average, also within the 'normal range'. i edited wikipedia some years back on this subject, read more here: http://en.wikipedia.org/wiki/Uric_acid# ... _sclerosis

most of the rest of the page is by others but i did write the multiple sclerosis section. i wrote just the first line of the normalizing low uric acid section, and a couple other tidbits.

when uric acid is low, it can indicate that the urea cycle is broken and toxic ammonia byproducts of digestion are not being converted safely to urea and then uric acid.

with a borderline zinc result of only 10.098, barring unforseen other factors, i'd expect your uric acid levels to be in the low 200s and your ammonia levels to be high. tidbit: links between high ammonia levels and fatigue...

you might be interested in requesting UA and NH3 tests to clear up the picture.
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Postby ToniH » Tue Jun 14, 2011 4:00 pm

I really appreciate your help. I'll request those labs be done when I see the new doctor. From what I read online after the nurse told me the number, I found that my number was scraping the bottom of the normal range. Hardly what I would call "fine".

Is there any issue with MS that could cause these rashes? I have no allergies, it's not bed bugs or poison ivy or poison oak or chicken pox. This is only the second time in my life that I've had it, and the first time was a year ago. As I said, my joints start itching, and then a certain area will start itching. Shortly afterwards, a rash and/or hives will show up somewhere on my body. The location is quite random, though it's almost always my knees or in between my fingers that starts itching first. Once that happens, I know I'm in for a long night.

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Postby jimmylegs » Tue Jun 14, 2011 4:24 pm

toni i bet your skin would sort itself out once your zinc deficiency is addressed. "Mild zinc deficiency is characterized by increased infections, slow healing of wounds, decreased sense of taste and smell, skin rashes, poor night vision, growth retardation, poor appetite and bad breath. Severe zinc deficiency causes skin problems, diarrhea, hair loss, mental disturbances and severe or recurrent infections. Since the average intake of dietary zinc in the US is below the RDA, many people have mild zinc deficiency. "

(i think the bad breath bit could possibly be related to high ammonia expiration)

if you can't get the UA and NH3 labs really quickly, it would be more of an academic exercise once you start supplementing to correct the zinc problem.

when i originally asked for a zinc test and it came back low, my doc said take 100mg per day for one month, then re-test.

FYI i personally found that taking 100mg zinc all at once made me nauseous. i can deal with 50mg at a time, with food.

hth!
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Postby bartman » Tue Jun 14, 2011 4:59 pm

I've been following this thread and I'm glad to see so many people have read it. ToniH, I know you may not like me but do me a favor and read pg. 24 of Dr. Burrascano' Lyme Treatment Guidelines.
http://www.lymenet.org/BurrGuide200810.pdf

You will see that it states one of the classic rashes associated with the Bartonella Like Organism is red papular eruptions. This is one of the main signs! and you have it on a picture. If this is bartonella you are making yourself worse with steroids.
Additionally, check out the babesia page on The Columbia Lyme and Tick Born Disease Research Center website
http://www.columbia-lyme.org/patients/tbd_babesia.html

You will see ' Because the Babesia organisms cause lysis of red blood cells, patients will frequently develop hemolytic anemia, as well as lymphopenia and thrombocytopenia'


I'm trying to help you but I hope this thread gets many many more views. Columbia is a very reputable university and hospital, they wouldn't have this center if this wasn't a huge problem. It is not unusual for an MS patient to have all 3 just as my cousin does. It is a very difficult treatment but most people get better but not before getting worse in some cases. Obviously, the longer you've been sick the longer and harder it takes to get better. Just trying to help someone, anyone. Minocycline + Copaxone would cover lyme, bartonella and ms.
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Postby jimmylegs » Tue Jun 14, 2011 5:27 pm

your high lymphocytes could indicate infection, and if so your resistance will increase once zinc is replete.
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Postby lyndacarol » Tue Jun 14, 2011 6:15 pm

ToniH, I suggest again that you and your doctor consider a fasting serum insulin. If the test cannot be performed right away, the sample should be frozen.

http://www.mercola.com/nutritionplan/index2.htm


Factor # 1 : Your Insulin Level
Insulin is absolutely essential to staying alive, but the sad fact is that most of you reading this have too much floating around, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.
Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.
You body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.
However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin resistant, and then diabetic.
If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.
Compounding the problem, when your insulin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.
Your Fasting Blood Insulin Test
To find out your insulin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin test, The test is done by just about every commercial laboratory and is relatively inexpensive.
Facts about Your Fasting Insulin Test:
• This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful.
A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.
• You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.
• This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.
• If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.
• Exercise is of enormous benefit in improving the sensitivity of your insulin receptors, and help normalize your insulin level far more quickly
.
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Postby ToniH » Tue Jun 14, 2011 6:31 pm

jimmylegs wrote:toni i bet your skin would sort itself out once your zinc deficiency is addressed. "Mild zinc deficiency is characterized by increased infections, slow healing of wounds, decreased sense of taste and smell, skin rashes, poor night vision, growth retardation, poor appetite and bad breath. Severe zinc deficiency causes skin problems, diarrhea, hair loss, mental disturbances and severe or recurrent infections. Since the average intake of dietary zinc in the US is below the RDA, many people have mild zinc deficiency. "

(i think the bad breath bit could possibly be related to high ammonia expiration)

if you can't get the UA and NH3 labs really quickly, it would be more of an academic exercise once you start supplementing to correct the zinc problem.

when i originally asked for a zinc test and it came back low, my doc said take 100mg per day for one month, then re-test.

FYI i personally found that taking 100mg zinc all at once made me nauseous. i can deal with 50mg at a time, with food.

hth!


I guess it just seems weird to me that it's followed the same pattern each time. But now that I have my zinc results, I'll start my zinc supplement. I think you mentioned this before, but what range do you recommend? And thank you again for all of this info.
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Postby ToniH » Tue Jun 14, 2011 6:36 pm

bartman wrote:I've been following this thread and I'm glad to see so many people have read it. ToniH, I know you may not like me but do me a favor and read pg. 24 of Dr. Burrascano' Lyme Treatment Guidelines.
http://www.lymenet.org/BurrGuide200810.pdf

You will see that it states one of the classic rashes associated with the Bartonella Like Organism is red papular eruptions. This is one of the main signs! and you have it on a picture. If this is bartonella you are making yourself worse with steroids.
Additionally, check out the babesia page on The Columbia Lyme and Tick Born Disease Research Center website
http://www.columbia-lyme.org/patients/tbd_babesia.html

You will see ' Because the Babesia organisms cause lysis of red blood cells, patients will frequently develop hemolytic anemia, as well as lymphopenia and thrombocytopenia'


I'm trying to help you but I hope this thread gets many many more views. Columbia is a very reputable university and hospital, they wouldn't have this center if this wasn't a huge problem. It is not unusual for an MS patient to have all 3 just as my cousin does. It is a very difficult treatment but most people get better but not before getting worse in some cases. Obviously, the longer you've been sick the longer and harder it takes to get better. Just trying to help someone, anyone. Minocycline + Copaxone would cover lyme, bartonella and ms.


I can't not like you, I don't know you. I think you come on a little strong and seem dismissive of MS as a condition by itself. But I'm going to read through this, because I really have nothing to lose. I'm at the end of my rope.

I did actually ask my PCP about maybe testing for lyme, and clearly he did not. I will ask whichever doctor I see next to test for it, if for no other reason than to rule it out.
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