My Adventures in MS

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

My Adventures in MS

Postby Katman » Wed Aug 10, 2005 6:12 pm

Dear LifeontheIce

I just found a message for you answering your question a month ago. I believe I have sasid a few times that I am rether inept on the computer and I really had to laugh at that - I sent it to myself! I very much appreciated your inquiry and apologize for the late response.

The question was about my acquisition of my antibiotics.

My husband is a pediatrician and my regular doctor is VERY sypathetic and now that I am improving so visibly I really have their support . It will be most interesting to visit my neurologist in Sept. or Oct. It will be the second visit to him since my turnaround.. At that time I had my 4th MRI which was no worse than the previous one. I was only a little improved then. Now I am finishing day 4 of Flagyl (7th pulse and spacy) and am a few hours overdue for my Avonex and STILL WALKING pretty well- not necessarily a straight line but it has been a long day. My tricycle, which I have used for 7 months to get to the barn, is broken and has been for 3 weeks.

I just read your eloquent critique of David Wheldons beautiful poem. Both the poem and your praise spoke for us all. I truly hope you are doing well.
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 LifeontheIce » Thu Aug 11, 2005 7:12 am

Fredrica, I found you! I was hopelessly trying to contact you via MSWorld boards to bring you here to present your case as a proof that the antibiotics works for PPMS.
Today I realized that I had seen your Yogi Berra motto somewhere else.
MSWorld boards is a strange place. I will write more later. Have to run to catch a baby!
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My Adventures in MS with Friends

Postby Katman » Thu Aug 11, 2005 7:45 am

Yes, this is an ever-surprising place. I did visit MSWorld once or twice and someone there asked me what the antibiotics regimen entailed. I told him/her who wote back and said "My wheelchair gave me freedom" and was not interested in more. I found this appalling and self-pitying in the extreme and said something about it in my last post here. This event awakened me last night and I realize I owe a global apology. There is a graceful acceptance of one's position and there is a self-pityng dependence on others forever. There is a VERY LARGE differencwe. The best example I know is my husband who would work himself to death for my comfort. This is not an acceptable thing to me yet that is what I felt from this person who responded. But on the other side, there is teamwork between function and non-function. This is a very personal disease to me and I take it as an attack on my integrity when I can't perform my responsibilities as I definw them. Boy, is that self-rightious!

I am so pleased that you found me! Your posting a month ago impressed me so much. Please keep posting.
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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A change of pace for sure!

Postby natgas » Thu Aug 11, 2005 10:06 am

Hello Ice and Katman

This board is great! A lot of positve things seem to be going down here. Wish I had found this earlier instead of wasting 6 months handing out, well I won't go there.

You know I was filling out SS papers the other day and I counted the Doc's I've been through since 2002 and that number is 14. The sorry part is I self DX myself w/ MS back in 02. It took 14 of these guys another 2 years to DX.

The only way back to somewhat normal is to do it yourself.


Roy
The hurrier I go the behinder I get....
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Postby Melody » Thu Aug 11, 2005 10:15 am

This is one time it's not much fun to be right :wink: Hubby we were pretty sure had it since 1998 and it took till Jan 2005 for him to be diagnosed. It even gets better. One of the top guys in Toronto Dr. O'Connor (St. Mike's Hospital)says he has PPMS. The top guy at Sunnybrook Hospital Dr. Lee says he has RRMS. We decided we like his diagnosis and went with it :lol: :lol: Give me the idea they have no real clue :wink:
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Postby LifeontheIce » Fri Aug 12, 2005 4:49 am

I spent about 14 months hanging around on MSWorld boards. I went there after taking Lipitor for 9 months. I wanted everybody to know how much I improved without any invasive treatment. At that time I was much ahead of anybody there and like you, Fredrica, I wanted to help them to get better.
They gave me a lot of grief there. They did not like my positive attitude. I had the disposition to give a solution to a difficult situation instead of commiseration alone. There, I realized the power the neurologists had over them and their admiration for CRABs, even though only 30% get better and for a while. No one questioned the deplorable state of MS treatment.
Melody, I was always fascinated by the scientific distinctions between PPMS, RRMS and SPMS. The definition is based on how much doctors can do. Nothing for the first and last. RRMS is the area for some manipulation and holds some hope. The top guy at Sunnybrook was an optimist. :lol:
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Postby LifeontheIce » Wed Aug 17, 2005 7:30 am

How are you doing today?
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Postby Melody » Wed Aug 17, 2005 8:27 am

My hubby is on Lipitor but only 40mg as well as 2000iu-2500iu depending on sun exposure of D3. Dr. O'Connor put him on that. I also have good control on his diet as we had to remove all food allergies or intolerances as well as QUIT smoking,aspartame and caffeine to get a handle on controllable toxins. Dr. Lee put him on Copaxone which is going really well with no side effects. We chose that one as it is synthetic and we are a tad skeptical on adding any mouse or human DNA to an already out of whack immune system. I have also added fresh ground flax at 3 TBS per day and 2 TBS of turmeric. Cold water fish between 3-5 days per week and seafood at least 3 times per weak. On occasion red meat but no processed meat and we try to eat no processed foods. We try to maintain all fresh which for us is quite easy as I live right near the fruit belt as well as the marsh where all the fresh veggies are grown. We also get loads out of the gardens this time of year.Hubby is actually feeling better this summer than he has in the past 4 or 5 years. He can actually stand the heat and his restless leg syndrome has totally disappeared and he has had that all his life. He also sleeps through the night for the first time ever. Unfortunately it is impossible to tell if it is one thing or a combination of things which is causing the dramatic improvement. Oh also forgot I've added foods with probiotics to his diet to heal leaky gut. He no longer has stomach problems so I'd say that is working as well. We do our best and look at what our neurologist says but it is not law. We know hubby's body better and since hubby lives in it he doesn't need a Doctor to tell him if he is showing improvement. We keep a record of all info pertaining to his MS at all times. We feel optimistic that we are doing our best to keep this disease at bay. Each one of us knows our own body so use that to your advantage :wink:
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Postby LifeontheIce » Wed Aug 17, 2005 9:11 am

Congratulations! Melody, all these things help. 40 mg of Lipitor is a good dose. You have to add CoQ10 200-300 mg daily to avoid myopathy cased by statins. I know that Lipitor pulled me through the worst phase of the disease.
LDN made me much more energetic. Have you tried it yet?
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Thanks had never heard of myopathy so looked it up

Postby Melody » Wed Aug 17, 2005 10:17 am

Statin drugs have become very popular and are being widely prescribed in recent years to lower high blood cholesterol and thus reduce the risk for heart disease. These drugs block cholesterol production in the body by inhibiting the enzyme called HMG-CoA reductase in the early steps of its synthesis in the mevalonate pathway. This same biosynthetic pathway is also shared by CoQ10. Therefore, one unfortunate consequence of statin drugs is the unintentional inhibition of CoQ10 synthesis. Thus, in the long run, statin drugs could predispose the patients to heart disease by lowering their CoQ10 status, the very condition that these drugs are intended to prevent.

Dr. Emile Bliznakov, an authority on CoQ10, recently published a scholarly review on the interaction between statin drugs and CoQ10 (Bliznakov and Wilkins, 1998). He wrote the best-selling book "The Miracle Nutrient Coenzyme Q10" several years ago and it is still being hailed as the best reference book on CoQ10 (Bliznakov, 1987).

The reduction of CoQ10 levels might be associated with myopathy, a rare adverse effect associated with statin drugs. This metabolic myopathy is related to ubiquinone (CoQ10) deficiency in muscle cell mitochondria, disturbing normal cellular respiration and causing adverse effects such as rhabdomyolysis, exercise intolerance, and recurrent myoglobinuria. (DiMuro S., Exercise intolerance and the mitochondrial respiratory chain. Ital J Neurol Sci. Dec. 1999;20(6):387-393).

It is important to note that Coenzyme Q10 supplementation does not interfere with the very important cholesterol-lowering effect of statin drugs such as Lipitor® and Zocor®. Therefore, if you are taking a statin drug, (especially for an extended period of time), you may want to consider discussing CoQ10 supplementation with your health care professional.

The bottom line is that the popular and widely prescribed cholesterol lowering drugs called "Statins" can block the synthesis of Coenzyme Q10 in the body which may lead to sub-optimal CoQ10 levels. Supplementation with Q-Gel CoQ-10 is a prudent approach when undergoing "statin" therapy.

But, don't just take our word for it. One of the world's premier Pharmaceutical Companies and the manufacturer of the 2nd largest selling statin drug has not one but two US Patents regarding the use of Coenzyme Q10 with HMG-COA Reductase Inhibitors (Statins). You can read the full contents of these patents for yourself on the official United States Patent and Trademark Office web site (www.uspto.gov/). It is interesting to note that both of these patents were issued over twelve years ago (May and June of 1990) but that no use of the patented process of combining Coenzyme Q10 with HMG-COA Reductase Inhibitors (Statins) has yet been made or publicized.

The Patent numbers you will want to look up are: Patent Number: 4,933,165 Patent Number: 4,929,437

Below is a verbatim sample from Patent Number 4,933,165.

"What is claimed is:

1. A pharmaceutical composition comprising a pharmaceutical carrier and an effective antihypercholesterolemic amount of an HMG-CoA reductase inhibitor and an amount of Coenzyme Q.sub.10 effective to counteract HMG-CoA reductase inhibitor-associated skeletal muscle myopathy.

2. A composition of claim 1 in which the HMG-CoA reductase inhibitor is selected from: lovastatin, simvastatin, pravastatin and sodium-3,5-dihydroxy-7-[3-(4-fluorophenyl)-1-(methylethyl)-1H-Indole-2yl]- hept-6-enoate.

3. A method of counteracting HMG-CoA reductase inhibitor-associated skeletal muscle myopathy in a subject in need of such treatment which comprises the adjunct administration of a therapeutically effective amount of an HMG-CoA reductase inhibitor and an effective amount of Coenzyme Q.sub.10 to counteract said myopathy.

4. A method of claim 3 in which the HMG-CoA reductase inhibitor is selected from the group consisting of: lovastatin, simvastatin, pravastatin and sodium-3,5-dihydroxy-7-[3-(4-fluorophenyl)-1-(methylethyl)-1H-Indole-2yl]- hept-6-enoate."

To access these patents: Go to the official United States Patent and Trademark Office web site at (www.uspto.gov/). (We certainly hope you'll come back to epic4health.com later!). From the Patent offices home page "click" on the Patents button, then "click" on "Search Patents", then click on "Patent Number Search". Type in the patent number (4,933,165) in the "Query Box" and "click" on the search button. The Patent number and title will show up, then just click on the patent number and you will be able to read the full documentation, including who is assigned the patent. I've probably made this whole search process sound harder than it really is -- give it a try, you may be surprised by what you learn.

Need More Information?

For more information on what CoQ10 is and how it works, "click" on the "What is CoQ10?" button. For more information on Q-Gel® CoQ10 specifically, "click" on the "Q-Gel® CoQ10" button. Both buttons are located on upper left hand side of the screen (you may have to "scroll up" to see them).

<shortened url>


:lol:
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Postby Melody » Wed Aug 17, 2005 10:26 am

LDN we have not tried as all is well right now. Other than the optic neuritis that never repaired from back in 1998 all other symptoms are gone at this time. Even the eye in the past few weeks has shown some improvement as he can now make out some features. It is odd as he was told after the first year if it hadn't improved it never would. I check his sight each week and have since 1998. This is the first improvement. He is pretty happy with it. The part that gets me is the people here as well as what we've looked up is way more info than we received from any of our Doctors. Shameful when you think of it. 8O 8O
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