Delay Drugs One Year OR ....

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Delay Drugs One Year OR ....

Postby vesta » Sun Jun 09, 2013 7:41 am

Delay Drugs One Year OR Reinforce your Healing WITH the Drugs by Optimizing your Nutrition and Treating the BLOOD REFLUX

On the site ThisisMs.com Alicia asked the following question:

Tues June 4 2013 General Discussion

"I have a question for you. How can anyone possibly tell if a disease modifying
drug is preventing relapses if no one really knows how MS works, everyone's MS
is different and it is impossible to predict when and how often you will have a
relapse? How can studies possibly test this? Even if you are testing a group of
people with MS and averaging everyone's response to a medication, how is that
really saying anything definitive? Why are the disease modifying drugs only
approved for RRMS? Correct me if I'm wrong, are there any approved for other
types of MS like PPMS? How does someone with RRMS know if they are doing well
because of a medication or if it is the natural course of their disease going
into remission? How does anyone know that?

The truth is, there is no good answer. That being the case, I believe one would be well advised to tell one's Neurologist one wants to delay a drug protocol for at least a year from the time one is diagnosed. Why? In order to avoid being pressured into treatment before one can research and try alternatives.

Keep in mind that it is possible to have one big MS attack never to be repeated. This implies for me that a hugely stressful event may cause a major blood reflux into the brain. No further major stresses, no further MS attacks. Let's say one begins taking a drug after this attack which appears to put an end to the MS. Was it really the drug, or would that have happened anyway? And in the meantime one's immune system is being unnecessarily damaged. Perhaps the Placebo effect is at work. "I'm being treated so now I can relax." Well, even if it's the drug which brings relief for primarily psychological reasons, perhaps another less toxic solution would be preferable.

Why a year? That is considered a grief milestone. After passing through each season one can begin to move beyond the loss of a previously carefree life.

Now for a few the only thing they may need to give up Aspartame consumption. (See blog aspartame ms).
Most should drastically alter their diet, and in particular stop eating glutens (ie wheat). Grieve for Junk food as you throw it away. Detoxification is no doubt in order, and optimum nutrition as well as Supplements. My suggestions can be found under Paleo-Macro diet.

Vitamins? Extract raw vegetable juice twice a week. Carrots as a base will provide adequate Vitamin A. Take a good B complex , making certain vitamin B12 is included. Vitamin C. Vitamine D3 in an important dose. Vitamin E. Calcium/Magnesium 2/1 ratio. Evening Primrose Oil pearls, Omega 3 pearls. These are minimums.
A Kinesiologist used muscle testing to determine my ideal diet and supplements found under Diet section.. Seek advice from a Naturopath/Nutritionist. Check out You Tube Dr.Terry Wahls "Minding Your Mitochondria" for a good visual presentation of dietary transformation as well as where you might end up by taking MS drugs for 7 years as she did. In that sense her video is a cautionary tale.

I realize now that a Shiatsu massage stopped my first known MS attack. (See blog post Pallis/Shiatsu Massage.) I'm convinced MS attacks are caused by a blood reflux into the central nervous system - brain and spinal cord. So if you are having attacks, take measures to stop them. A Massage may do it, Acupuncture treatment, Ayurvedic massage, Osteopathic treatment. Even a well prescribed Homeopathic remedy. I now give myself daily Acupressure treatments with a TENS apparatus to keep the blood flowing and stop attacks. (See Acupuncture blog post).

I've come to the conclusion there are 3 major causes of the blood reflux 1) toxicity (e.g. dietary -see above)
2) skeletal and 3) vein stenosis (Dr. Zamboni's CCSVI).

Toxicity you can deal with yourself, though good guidance will help.

If the problem is skeletal body manipulators such as chiropractors and osteopaths may be needed. Dentists treat jaw misalignments which may interact with upper cervical misalignements. (Recent observations about cranial fluid dynamics, the possibility that cerebrospinal fluid build-up can "pressure" venous blood
circulation leading to a blood reflux implies that attention should be paid to
all aspects of brain physiology. In fact, before considering angioplasty, I
believe one should consult specialists in skeletal adjustment - chiropractors,
osteopaths, dentists - whose manipulations might release blocked blood/fluid
circulation from the head and spinal cord. This is especially important if the
MS develops after an accident. In such cases the problem does not reside IN the vein but
pressure ON the vein.)

Vein stenosis will require venoplasty, the use of a catheter to open and "balloon" a "stenosed" vein. This requires a competent, experienced interventional radiologist. I would eliminate the other possibilities before trying this, and it could well take a year to come to this decision.

For further information check out the site ThisIsMs.com. Under the
CCSVI thread 1) for Angioplasty see "Dr. Sclafani answers some questions"
which is particularly informative since Dr. Sclafani presents reports of
angioplasties he has performed complete with photos. An excellent example
revealing how CCSVI treatment has evolved can be found on page 519 May 21,
2013. Dr. Sclafani performed venography of "both dural sinuses, jugular
veins, brachioicephalic veins, azygos vein, left rebal vein, and ascending
lumbar vein and the inferior vena cava".
2) Skeletal issues are discussed under "CCSVI and CCSVBP" a) upright doc (Dr. Michael Flanagan) and b) "When CCSVI fails try AO and/or the Dentist" by Rosegirl. (I am suggesting these sites for information only - a starting point in your own research.)

Another thing to consider is a latent infection - viral or bacterial. I myself use nutritional therapy to strengthen my immune system to keep these infections "latent". I also use Homeopathy to protect myself. The remedy Oscillococcinum by Boiron works marvellously well to prevent colds and flus - all viruses in fact. The care of a good classical Homeopath (single remedy) can work wonders in the Healing process. However, they are often difficult to find. Antibiotics and chemicals will antidote Homeopathic remedies (even coffee for some) so they won't work once on a heavy drug protocol.

I believe MS patients exhibit these 2 basic factors to varying degrees - the
blood reflux and the viral immune system assault. (Perhaps bacterial as
well e.g. Chlamydia Pneumoniae) And to complicate things further,
the origins of the blood reflux vary - body tension, skeletal, or vein stenosis.
A complicated picture with no one-size-fits-all solution. While scientists
thrash this out, I believe it is up to me to find practical solutions to
take care of myself.

Let's say one is having symptoms of paralysis, one is very ill, naturally one panics. Lab tests follow, spinal tap, MRI, CAT scan, eye exam, other? and the Doctor concludes with a MS diagnosis. I believe now is the time to say STOP before falling into the MS trap. This may displease the Neurologist. By saying you want to put off drugs for the present, you are not saying "no", you are saying "let's wait".. This is a more diplomatic way of escaping the MS trap. Because it is a TRAP.

Wheelchair Kamikaze recently (April 17, 2013) posted a blog entry "Anger Mismanagement".
He doesn't say so, but one good reason for this anger could well be that one has the impression of being taken for a dupe. One undergoes all the diagnostic exams - some painful - one submits to drug treatment - some painful, and one falls apart anyway. Doesn't it occur to the victim that obedience wasn't the best idea? Marc admitted that none of the drugs have helped him. Annette Funicello, who died recently, felt that the only treatment which helped her was CCSVI angioplasty. Even though the treament came too late for her, she wanted her Foundation to promote it, even though the big Pharma and Neurology lobby fiercely oppose it.

My approach is more practical than theoretical. What has helped me, what does it feel like to live in an MS body, what do I need to do and to avoid. Dr. Zamboni's blood reflux theory liberated me. Why not others?

AND I BELIEVE IT IRRESPONSIBLE FOR NEUROLOGISTS TO IGNORE THE BLOOD REFLUX FACTOR IN MULTIPLE SCLEROSIS.

Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new
lease on life. I used to live in constant fear of a debilitating relapse. Now I
know what to do to head off a breakdown. Having embarked once again on my diet I
feel better and hopeful of improvement in the future. I know that anything which
improves blood/brain fluid circulation (swimming, acupuncture, acupressure,
massage, kinesiology, osteopathic, chiropractic, any energy therapy) will make
me feel better and prevent a relapse. Having resumed summer swimming, I feel so
energized, my brain is "breathing" oxygen again. (see post Oxygen and MS fatigue). And I need to
be ever vigilant in avoiding illnesses which might trigger off a latent
virus.

I hope other Multiple Sclerosis patients will consider these ideas in managing their own treatment.

MS Cure Enigmas.net
Last edited by vesta on Wed Jun 12, 2013 9:06 am, edited 1 time in total.
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Re: Delay Drugs One Year

Postby MarkLavelle » Sun Jun 09, 2013 2:18 pm

...or you can try all kinds of less well proven things *while* you take your DMD of choice.

I BELIEVE IT IS IRRESPONSIBLE TO ADVISE PEOPLE WITH MS NOT TO TAKE A DMD.

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Delay Drugs One Year

Postby Ladymac » Sun Jun 09, 2013 4:31 pm

KUDOS TO: MarkLavalle!! Hear Hear! Nice Job.

As far as the other Bloviating erroneous Regurgitation you so Eloquently defended us all against....

I won't even get going other than to say, anyone who reads the irresponsible ranting and raving with yet again, another person who needs to leave this Site....

DMD can save your eyesight, prolong mobility, reduce Exacerbations in number as well as damage....oh, and the 1 year rule this Bloviating tirade...How long do you think it takes to get an MS Diagnosis?

Please, do us all a favor, leave us alone! We have people of new and not yet diagnosis that are reaching out and you are drowning them with CRAP!

Get off OUR soap box.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: Delay Drugs One Year

Postby vesta » Mon Jun 10, 2013 9:04 am

Tsk, tsk, tsk. You don't agree with me, that is fine, but no need to be uncivil. "another person who needs to leave this Site" That's called censorship and Group Think. It amazes me how people panic at suggesting alternatives to current medical ideology. No one needs to pay attention to me. If you are so sure of your viewpoint why resort to insults "Bloviating erroneous Regurgitation" - "drowning them with CRAP!" If there is "ranting and raving" going on, it isn't me. The sad thing about your approach is that people in search of answers are intimidated to seek perfectly valid alternatives.
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Re: Delay Drugs One Year

Postby bifrostlake » Mon Jun 10, 2013 2:35 pm

MarkLavelle wrote:I BELIEVE IT IS IRRESPONSIBLE TO ADVISE PEOPLE WITH MS NOT TO TAKE A DMD.

This needs to shouted out on this site. I'm new but already I've noticed a strong tendency towards pseudoscience on this site. Reminds me of the nonsense anti-vaxxers spout. Maybe we can get Jenny McCarthy to "cure" us! ;) But seriously, are the science-literate a minority on this site?

vesta wrote:If one seriously tries alternatives before the drugs, one need have no later regrets.

Unfortunately, the alternative didn't work for Steve Jobs.

I suggest that the OP read "Bad Science" by Ben Goldacre. It's woefully obvious that they need to educate themselves on what actual evidence-based medicine is.
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Re: Delay Drugs One Year

Postby Gogo » Tue Jun 11, 2013 4:20 am

bifrostlake wrote:
MarkLavelle wrote:I BELIEVE IT IS IRRESPONSIBLE TO ADVISE PEOPLE WITH MS NOT TO TAKE A DMD.

This needs to shouted out on this site. I'm new but already I've noticed a strong tendency towards pseudoscience on this site. Reminds me of the nonsense anti-vaxxers spout. Maybe we can get Jenny McCarthy to "cure" us! ;) But seriously, are the science-literate a minority on this site?

vesta wrote:If one seriously tries alternatives before the drugs, one need have no later regrets.

Unfortunately, the alternative didn't work for Steve Jobs.

I suggest that the OP read "Bad Science" by Ben Goldacre. It's woefully obvious that they need to educate themselves on what actual evidence-based medicine is.


Man, you said it. :)
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Re: Delay Drugs One Year

Postby vesta » Wed Jun 12, 2013 5:41 am

I need to change my post to read

"Delay Drugs One Year OR reinforce your healing WITH drugs by optimizing your nutrition and treating the blood reflux"

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Re: Delay Drugs One Year OR ....

Postby dlynn » Thu Jun 13, 2013 6:44 am

vesta,
I have the same questions too re. DMDs'. I had no noticeable symptoms for 15 yrs. after my dx. nor was I on any DMDs'
during the first 10 yrs. I let the Dr. talk me into starting an injectable for ON. I was taking it for 5 yrs.
Had I been taking the drugs since the beginning, I might have thought it was keeping the relapses at bay. If the cause is unknown,
I'd rather just continue with my healthy diet, exercise, gluten free, PT, prayer, and a good nights' rest.
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Re: Delay Drugs One Year OR ....

Postby vesta » Thu Jun 13, 2013 7:20 am

Hi dlynn:
Thanks for the comment. I realize that if someone is on DMD's it isn't helpful to suggest that taking the drugs might be a mistake, especially since there is so much fear related to the disease and so many variables. If one hasn't yet started the drugs, I would hope one seeks alternative thérapies, but usually it's best to find a healing "Partner" - a naturopath or kinesiologist ? because it's easier if one has some guidance. I also know it's hard to believe removing glutens from the diet could make a difference. I have been "liberated" by the blood reflux theory because I've figured out how to stop setbacks. Unfortunately most Neurologists seem incapable of reasoned discussion on the issue. It's "I'm the boss, shut up and submit." It's like entering a penal colony and the fellow inmates seem bent on enforcing conformity to the rules. Thanks again.

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Re: Delay Drugs One Year OR ....

Postby dlynn » Thu Jun 13, 2013 7:40 am

vesta,
When I mentioned Dr. Zamboni and CCSVI to my Dr., he was not interested (end of discussion!) but wanted me to go on Tysabri.
That's when I decided to move on...
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Re: Delay Drugs One Year OR ....

Postby vesta » Thu Jun 13, 2013 9:14 am

dlynn,
I have the impression Drs are getting some kind of incentive from the Drug company to put patients on Tysabri. It can lead to a brain infection and death. I think it's the last thing to try if going on a DMD. Also, there is a drug which causes the bones to dissolve? a necrosis? Do you know which one? If one does go on a drug, one should avoid anything that causes a permanent injury. Well, that's my opinion.
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Re: Delay Drugs One Year OR ....

Postby dlynn » Thu Jun 13, 2013 11:46 am

vesta,
That's the impression many have re. drug companies. I do not know which drug causes bones to dissolve, is it an ms drug?
My dentist would not prescribe steroids because they weaken the bone. That is how I understood it. Maybe you are thinking
of steroids. Actually, that was what my neuro. prescribed for ON, that made me so very sick. For 15 of the 20yrs. since my ms dx,
I have not taken any of the DMDs. I had the procedure for CCSVI and It was the only treatment that alleviated my symptoms, thank God
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Re: Delay Drugs One Year OR ....

Postby vesta » Sat Jun 15, 2013 5:56 am

Hello dlynn:
I found the drug, yes, steroids, marc stecker reports that he developed Avascular Necrosis in his hips after prolonged dose of IV Steroids and this is a very painful condition.

"Avascular necrosis (also osteonecrosis, bone infarction,[1] aseptic necrosis, ischemic bone necrosis,[2] and AVN) is a disease where there is cellular death (necrosis) of bone components due to interruption of the blood supply.[3] Without blood, the bone tissue dies and the bone collapses.[2] If avascular necrosis involves the bones of a joint, it often leads to destruction of the joint articular surfaces. (see Osteochondritis dissecans)." (quote from Wikipédia)

I would avoid both steroids which might lead to this condition, as well as Tysabri.

Recently Doctors have been calling in patients to begin Tysabri, even bullying them into taking it, and it gives the impression they are getting some kind of "kickback" from the drug company. That might be too strong a term, but forcing someone into taking a potentially harmful drug against their will deserves a strong condemnation.
I am curious about your CCSVI treatment. I now see that you are featured on "Dr Sclafani Answers Some Questions..".thread and have had 4 procédures. So I will follow your exchange with him.
Thanks,

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Re: Delay Drugs One Year OR ....

Postby Ladymac » Sun Jun 16, 2013 4:37 am

Hi Vesta,

I not only totally agree with you that Steroids in chronic use can cause issues, I had nothing else other than Solumedrol every 4 weeks for about a year and a half to 2 years and it cause other more significant problems. They damaged my Adrenal Glands aka Addison's Disease. The thing is that I had tried many of the other DMD and got to the point there was nothing else I could go on while waiting for Tecfidera to come out. I knew up front and made the decision that the benefits outweighed the risk. However, during that time I had "stable" MRI's for the first time ever.

As far as the bone situation, also you are correct, we up front made sure I was taking plenty of Vitamin D daily and a once a week mega-dose of 50Ku and once a year I take an Infusion of Reclast. Reclast is a 15 minute infusion to prevent Osteoperosis that is done once a year. I couldn't take the weekly meds like Fosamax and some of the others because my stomach couldn't take it. I have had Bone Scans that so far has said that one of the 2 areas stayed the same and the other had gained bone which is terrific because I had already moved to Osteopenia which is the pre-cursor to Osteoperosis. So it is like everything else, because of one thing I had to do something else, but I had my annual Reclast Infusion last Monday and am waiting to get scheduled for another bone scan so I can see how things are doing now.

We (my doc and I) made the decision to try at every effort to not have to get another steroid infusion for Exacerbation unless it is a major one. I have had 3 or 4 major exacerbations in the last 7 years that without the IV Solumedrol I could have sustained permanent damage to sight, walking, etc. It's just very dangerous now for me with the Addison's Disease with the MS because I have to keep a kit on me 24/7 to give m yself an emergency injection if I go into Adrenal Failure and take a low dose of Hydrocortisone twice a day to make up for the Cortisol that one's body makes when they have working Adrenal Glands.

BTW, I think it was you, but someone had talked about swimming as a good mode of therapy. I totally agree! In the winter I have a health club I take a "arthritis water class" which really is a very slow stretching and low water aerobics class. In the spring through fall we put in a small salt water swim spa with hydro-therapy jets here at the house and not only does it relax me, but the circulation and aerobic benefits are amazing. I am convinced I am still walking albeit sometimes with a cane for balance because of the swimming! Kudos on doing things to increase total circulation.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
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Re: Delay Drugs One Year OR ....

Postby vesta » Tue Jun 18, 2013 9:52 am

Hello Ladymac :j
Thanks for the rundown on the history of your treatment. Yes, I strongly recommend swimming to get the blood –fluids in general – flowing which also gets oxygen into the brain. I’m in heaven because I’ve started to swim again. It’s the most effective treatment for me, better than acupuncture or osteopathy or massage etc. I do the crawl which gives the added benefit of strengthening the lung capacity and probably getting even more oxygen into the brain. It occurs to me I should do breathing exercises during the winter along with getting back massages to try to get the same effect, strengthen blood circulation through the brain and overcome the blood reflux or stagnation.
Since swimming helps you, why not take that one step further? What if a back massage while under stress can halt an exacerbation? You must have warning signs, and at that very moment get anyone to massage you to get the blood flowing out of your head and spinal cord. Don’t wait, I can feel the blood reflux, I begin to have nerve symptoms and if I get a quick 30 second massage from my husband, I can stop it. (The last time he worked a bit longer and then I took a sleeping pill to knock myself out for the night and that was it.) Ask your Doctor, I am not suggesting you delay her treatment but that you may be able to solve the problem on your own. What if the best thing one could do when a patient comes in with a raging attack is give a shiatsu massage, (for instance), and then have her sleep on a tilted bed to let gravity prevent the blood backing up. What if that is true? How can that harm anyone? If it does no harm, it seems worth a try. If you could begin to get results, this would ease your mind that you yourself (with the aid of your entourage) could prevent an exacerbation.
Here is a story.
I met a young French lady (Christine) rather badly afflicted with MS (she used 2 canes and any further exacerbation would likely leave her unable to walk). We were in the waiting room of our Acupuncture Doctor in Paris. She told me that after receiving an ayurvedic massage in India – 4 women worked on her using essential oils – she entirely recovered and could walk normally. Her recovery resembles that of those after successful angioplasty procedure. I don’t know how long the recovery lasted but once returned to France her condition deteriorated. She told me this about 15 years ago. It made no sense to me then but now it does. Dr. Sclafani feels that the vein stenosis is a valve problem. Let’s say the massage relaxed the valves and opened the blood flow. Unfortunately to keep the flow going, would she need massages every day? Would she be a good candidate for angioplasty? She was desperate to return to India for another treatment, but maybe she could have gotten something as good in France. Anyway, I asked the acupuncture doctor if she knew where Christine was, but she has disappeared. I would love to find her and tell her she was right and maybe direct her to treatment. It is so sad because she knew there was another way to healing.
Keep the faith

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