My regimen(s)

Tell us what you are using to treat your MS-- and how you are doing.

Postby CureOrBust » Sun Dec 04, 2005 4:02 am

well, i am about to find out how effective my regimens really are.

I have a minor cold/flu, which is normally a trigger for a relapse. I usually start to notice something within a week of the start of the infection (which I first noticed on saturday morning).
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Postby Katman » Wed Dec 07, 2005 7:01 am

Hi CureOrBust

Since the incubation period of colds is pretty much passed, you may know by now if you have a cold or an exacerbation. Your fan club is waiting patiently to know also. Would you share the latest information?

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby CureOrBust » Fri Dec 09, 2005 2:14 am

Hi katman,

bad news. I am pretty sure that I have started to have a relapse.

I decided not to wait around to see if it gets worse, so have taken 75mg Predisolene. In the past, this has usually halted relapses.

At this stage things are pretty minor. I have noticed that walking is slightly more difficult, but the clincher for me was the way i started to get tngling up the side of my legs. When my jeans rubbed up against my skin (on my lower legs) it felt sharp.

I tried to log on lastnight, but i had problems connecting.

Will keep you informed. Hopefully, there isnt too much problems with Abx's, LDN, Statins & prednisone. It just be a couple of days (ie 3day pulse)
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Postby LifeontheIce » Fri Dec 09, 2005 7:00 am

Dear Cureo,

Year ago, in July, I realized how thin line was between what I assumed health and disease. After almost three years on Lipitor and no neurological symptoms I considered myself far from MS. After one month, following Flagyl, I got different kinds of tingling all over the body and it really scared me. I stopped the ABX and restarted Lipitor.

I would do the same thing in your situation, even though I sweared I would never put the steroids in my mouth. Criteria can change pretty fast. Wish you a quick resolution of the symptoms.
B.
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Postby CureOrBust » Sat Dec 10, 2005 4:19 am

ok, the 75mg prednisone last night seems to have done the trick. This is definitely an improvement on the past, as previously it would take 2-3 days before i noticed a change. I think i actually noticed an improvement after 6 hrs of the prednisone hit. Who knows, maybe it wasnt a relapse.

I think i will take another 50-75 tonight, just to be "on the safe side".

I also went to pick up a new script of LDN (in 4.5mg tablets, instead of taking 3x1.5). I spoke to the chemist, and asked about prokarin. He had actually gone over to america and met the woman who "developed" it. He though he was up on the "latest" in MS, but was blind sided when i told him of the CPn link, and that i was on Antibiotics for MS; and also Aimspro. I gave him a few web addresses to check out. I then remembered in the car that i forgot to also mention tovaxin. I'll email him with a few more links
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Postby SarahLonglands » Sat Dec 10, 2005 4:59 am

Cureo,

Of course, what you have to remember is that the only thing here that addresses the underlying infection is the antibiotics. They all no doubt have an ameliorating effect but don't go straight in and hit the nail on the head, so to speak.

Maybe your relapse wasn't a relapse at all, but anyway, don't you dare stop the antibiotics yet!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Katman » Sat Dec 10, 2005 9:01 am

Hi CureO

Just adding my encouagement to those more knowledgeable. Please keep on with the abx through it all. I just two days ago had LFT when I was "under the influence of" Rifampin, Doxy, Azithromycin and Flagyl : SGPT was 66, SGOT 26. These are lower than last month. Of course I had Avonex that night after LFT but as I said- I need all the help I can get. I know this causes a huge spike. We all hope you are on an ever-increasing incline of improvement.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby SarahLonglands » Sat Dec 10, 2005 10:28 am

If you mean me as one of "those more knowledgeable" I don't have a clue what SGPT and SGOT are! Or LFT come to that. Please enlighten me, dear Rica.

Sarah :?
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Melody » Sat Dec 10, 2005 11:48 am

Blood (Serum) Glutamic-Oxaloacetic Transaminase (SGOT) Test

What is the SGOT test?
This test measures the amount of an enzyme called glutamic-oxaloacetic transaminase (GOT) in your blood. This enzyme is found in the liver, muscles (including the heart), and red blood cells. It is released into the blood when cells that contain it are damaged. Other names for this enzyme are aspartate aminotranskinase, aspartate transaminase, and AST.

Why is this test done?
The SGOT level is measured to check the function of your liver, kidney, heart, pancreas, muscles, and red blood cells. It is also measured to monitor medical treatments that may lead to liver inflammation.

How do I prepare for this test?
You may need to avoid taking certain medicines before the test because they might affect the test result. Make sure your health care provider knows about any medicines, herbs, or supplements that you are taking.
Talk to your health care provider if you have any questions.
How is the test done?
A small amount of blood is taken from your arm with a needle. The blood is collected in tubes and sent to a lab.

Having this test will take just a few minutes of your time. There is no risk of getting AIDS, hepatitis, or any other blood-borne disease from this test.

How will I get the test result?
Ask your health care provider when and how you will get the result of your test.

What does the test result mean?
The normal SGOT range for adults in most labs is 0 to 35 units per liter (U/L). The normal range may vary slightly from lab to lab. Normal ranges are usually shown next to your results in the lab report.

Your blood level of SGOT may be higher than normal because:

You have liver damage caused by:
infection (such as viral hepatitis or mononucleosis)
gallbladder disease
toxins (such as alcohol)
cancer.
You have muscle damage caused by:
muscle diseases, such as dermatomyositis or polymyositis)
progressive muscular dystrophy
injury (such as after a fall, auto accident, or seizure).
Your kidneys, heart, or liver are injured.
You have heart failure or have had a heart attack or recent heart catheterization.
You have kidney failure.
Your pancreas is inflamed.
There is a breakdown (hemolysis) of your red blood cells.
You are taking certain medicines, including some used to lower cholesterol levels, some antifungal medicines, acetaminophen, salicylates (aspirin), and some antibiotics such as erythromycin.
What if my test result is not normal?
Test results are only one part of a larger picture that takes into account your medical history and current health. Sometimes a test needs to be repeated to check the first result. Talk to your health care provider about your result and ask questions.

If your test results are not normal, ask your health care provider:

if you need additional tests
what you can do to work toward a normal value
when you need to be tested again.

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Blood (Serum) Glutamate Pyruvate Transaminase (SGPT) Test

What is the SGPT test?
This test measures the amount of an enzyme called glutamate pyruvate transaminase (GPT) in your blood. This enzyme is found in many body tissues in small amounts, but it is very concentrated in the liver. It is released into the blood when cells that contain it are damaged. This enzyme is also called alanine transaminase, or ALT.

Why is this test done?
The GPT level is tested to look for and evaluate damage to the liver. It is also measured to check medical treatments that may lead to liver inflammation.

How do I prepare for this test?
You may need to avoid taking certain medicines before the test because they might affect the test result. Make sure your health care provider knows about any medicines, herbs, or supplements that you are taking.
Talk to your health care provider if you have any questions.
How is the test done?
A small amount of blood is taken from your arm with a needle. The blood is collected in tubes and sent to a lab.

Having this test will take just a few minutes of your time. There is no risk of getting AIDS, hepatitis, or any other blood-borne disease from this test.

How will I get the test result?
Ask your health care provider when and how you will get the result of your test.

What does the test result mean?
The normal GPT range for adults in most labs is 0 to 35 units per liter (U/L). The normal range may vary slightly from lab to lab. Normal ranges are usually shown next to your results in the lab report.

Your SGPT level may be much higher than normal (up to 50 times the upper limit of normal) if:

You have liver damage from an acute viral infection such as viral hepatitis A, B, or C.
You have liver damage caused by medicines you have taken.
Your SGPT levels may be higher than normal also if:

You drink too much alcohol.
You have mononucleosis.
You have chronic liver infection or inflammation.
You have gallbladder inflammation, such as may caused by gallstones.
You have a gallbladder infection.
You have congested blood flow through the liver due to heart failure.
You have liver cancer or another cancer that has spread to the liver.
You are taking certain medicines, such as:
medicines used to lower cholesterol levels
antifungal medicines
some narcotics and barbiturates
methotrexate
acetaminophen
salicylates (aspirin).
No medical problems are known to cause an SGPT level that is lower than normal. Sometimes the test result may be lower than normal but it does not signify a problem.

What if my test result is not normal?
Test results are only one part of a larger picture that takes into account your medical history and current health. Sometimes a test needs to be repeated to check the first result. Talk to your health care provider about your result and ask questions.

If your test results are not normal, ask your health care provider:

if you need additional tests
what you can do to work toward a normal value
when you need to be tested again.
LIVER FUNCTION TESTING


Role of the liver
The role of the liver is to keep the body’s complex internal chemistry in balance.

It takes raw nutrients from our digestive system (in the form of carbohydrates, protein, amino acids, etc) and processes them so they can be stored and sent to different parts of our body in the right form and quantity.

The liver regulates the level of sugars in our blood and manufactures bile (which breaks down fats in our stomach). It also helps remove toxins, drugs and hormones from our bloodstream.

This brief explanation does the liver little justice — it actually carries out over 1,500 complex biochemical functions. Perhaps it is because the liver is so important that, up to a certain point, like a lizard’s tail, it can rejuvenate itself.

What are liver function tests?
A liver function test (LFT) is a blood test that gives an indication of whether the liver is functioning properly. The test is also very useful to see if there is active damage in the liver (hepatitis) or sluggish bile flow (cholestasis).

Liver function tests measure the amount of particular chemicals in the blood. This gives a gauge of possible damage to liver cells — damage that can be caused by many things including HCV. So a more correct term for a liver test would actually be a liver dysfunction test.

It’s important to remember that diagnosis of liver disease depends on a combination of patient history, physical examination, laboratory testing, biopsy and sometimes imaging studies such as ultrasound scans. Diagnosis of hepatitis C usually also involves antibody tests.

People reading this page should keep in mind that abnormalities within liver tests don’t necessarily point to specific diseases. Only a physician who knows all the aspects of a specific case can reliably make a diagnosis.

What are the substances measured in an LFT blood test and what’s so important about them?

Total protein
Total protein is simply a combined measure of the concentrations of proteins in the blood. This information can provide clues to several diagnostic possibilities. There are 2 major types of protein: albumin and globulin.

Albumin
Albumin provides a gauge of nutritional status. It can be reduced due to liver damage and kidney disease. Because albumin is made in the liver, levels tend to drop with cirrhosis.

Globulin
This describes the specific level of globulins — which include antibodies. This measure can be raised when liver cells are damaged due to autoimmune liver damage or to long-standing liver disease of many types, particularly when cirrhosis exists.

Bilirubin
Bilirubin is a by-product of the breakdown of red blood cells. It is the yellowish pigment responsible for jaundice.

Bilirubin levels can be raised due to many different liver diseases, as well as conditions other than liver disease, e.g. gallstones. In cases of long term liver illness (chronic hepatitis), the level usually stays within the normal range until significant liver damage has occurred and cirrhosis is present.

In cases of short term liver illness (acute hepatitis), elevated bilirubin levels indicate the severity of the acute illness.

GGT
GGT (Gamma Glutamyl Transpeptidase) is an enzyme produced in bile ducts that may be elevated due to bile duct illness. The GGT test is extremely sensitive and may be elevated due to any type of liver disease or by different drugs, including alcohol, even when liver disease is minimal. GGT levels are sometimes elevated even in the case of a normally functioning liver.

ALK Phos
ALK Phos refers to Alkaline Phosphatase, a family of enzymes produced in the bile ducts, intestine, kidneys, placenta and bones. These levels may rise when disease of the bile ducts or bone disorders occur.

ALT
ALT (Alanine Transaminase) is an enzyme produced in hepatocytes (the major type of liver cells). ALT level in the blood is increased when hepatocytes are damaged or die — all types of hepatitis (viral, alcoholic, drug induced etc) cause hepatocyte damage.

Levels of ALT may equate to the degree of cell damage but this is not always the case, particularly with hepatitis C. An accurate estimate of liver cell damage can only be made by liver biopsy.

AST
AST (Aspartate Transaminase) is similar to ALT above, but less specific for liver disease because it is also produced in body muscle cells. It does tend to be higher than ALT in cases of alcohol-related liver disease.

Platelet count
Platelets are the smallest of all blood cells and are involved in promoting clotting of the blood — normally a process of healing. In cases of chronic liver disease where cirrhosis exists, the platelet count can be lowered — although this can occur due to many conditions other than liver disease.

Adult range or normal range
This figure allows you to compare your various LFT readings with what is considered to be the upper limit of normal (by your particular laboratory).
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby ljm » Sun Dec 11, 2005 2:23 am

Re Prokarin, in case this is helpful, I looked into it briefly few months ago. I phoned the woman who developed, and then spoke to a local pharmacist who was preparing it regularly. HarryZ knows a fair amount about the product, I believe his wife used it. And there are recipes for inexpensive home versions (example from Bob Lawrence, a UK doctor featured on the British site http://www.msrc.co.uk). Lawrence answers emails on subject (and, by the way, is far more convinced of effectiveness of LDN).
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Postby CureOrBust » Sun Dec 11, 2005 2:31 am

From memory, my ALT in my LFT :) is the one that is just outside normal.

My doctor says he's not too concerned with the level its at; considering the level of simvastatin etc i am on. And my liver function test was all over the place while i was on rebif.

I ended up taking another 75mg dose of prednisone last night, and i definitely noticed a step up in improvement in the morning (tingling in my feet felt noticably better). I will not however be taking another dose tonight. But i will be having a double hit of curcumin (tumeric extract).
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Postby SarahLonglands » Mon Dec 12, 2005 11:38 am

Golly, thanks Melody. That's probably more than I ever wanted to know about anything to do with the liver!

Sarah 8O
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Katman » Mon Dec 12, 2005 2:29 pm

Thanks Melody

That was an all-inclusive lesson in LFT. It was certainly much better than I could have done. Thank you.

Just a note. I went to the grocery and was bumped from behiond and got out to see who had done this. Small towns being what they are, it was the wife of one of the other local doctors. I did not know this (I am such a hermit) untill after I asked what I ask almost every one I meet- the famous question. "Do you have any friends or relatives with MS"? Her answer was "Yes, two" We talked for a few minutes and she will probably increase our membership by at least two. Again, we are mostly medical people here or for us hangers-on, close to medical people. We need to do something about that but I don't know what.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby SarahLonglands » Tue Dec 13, 2005 4:47 am

Rica, just keep on talking. Suddenly something seems to be happening here, leaving aside the neurologists that is......Sarah 8)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby CureOrBust » Tue Dec 13, 2005 4:56 am

ljm wrote:Re Prokarin, in case this is helpful, I looked into it briefly few months ago.

You sound as if you decided against it. Why? Every time i have raised prokarin here, i get the sound of tumble weeds rolling by...

ljm wrote:And there are recipes for inexpensive home versions

I have found those also, but for the first try, i think i will give the compounded version a try, that way i will have a better idea as to its effectiveness more than my ability to follow instructions.

Thanks.
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