OPINIONS OF MEDS

[NAKAMURA13]

I posted earlier that i've stopped taking my meds. Betaseron to be specific. I was on it for almost 2 years and suddenly started to get really bad flu like symptoms. I started to research about these meds and found out that it could(maybe) slow the progression of the disease but only by 30%. It's not good for your body and the bruising was terrible. I decided to take Dr Terry Wahls' approach. I feel much better then when i was on the meds, even when i wasn't getting the flu like symptoms. I've also decided to be proactive about my vitamin deficiencies. I am positive that i'm going to try the healthy way first to see how my approach works. I had my first MRI since doing this and my brain scan stayed the same & my spine got better. Go figure??
Anyone have any kind of advise? I know that i was really scared to stop my meds but i know i made the right choice for me.

[ScaredofMS]

I posted earlier that i've stopped taking my meds. Betaseron to be specific. I was on it for almost 2 years and suddenly started to get really bad flu like symptoms. I started to research about these meds and found out that it could(maybe) slow the progression of the disease but only by 30%. It's not good for your body and the bruising was terrible. I decided to take Dr Terry Wahls' approach. I feel much better then when i was on the meds, even when i wasn't getting the flu like symptoms. I've also decided to be proactive about my vitamin deficiencies. I am positive that i'm going to try the healthy way first to see how my approach works. I had my first MRI since doing this and my brain scan stayed the same & my spine got better. Go figure??
Anyone have any kind of advise? I know that i was really scared to stop my meds but i know i made the right choice for me.

I've researched these meds as well. Conclusions I've come up with so far are that they are expensive, Dont work for all and full of side effects. I also cannot find a legitimate answer on how these drugs treat MS. One source says they reduce the relapse rate by 30%. Another says that they reduce disease progression by 30%. Then another says that the drugs only work on 30% of MS'ers. So when the MSscoiety says that these drugs have been "shown" to work I am not exactly sure what they are talking about. I'm undiagnosed but I am also going to try the diet approach. My personal opinion based on the research I have seen as well as feedback from PwMS in various forums is that the drugs are not effective. At least not significantly. I mean there is no way to tell for sure that they work.

[mandyc]

I've just found this excellent forum which I'm reading through to help me decide whether to consider MS injection meds or not.

I was diagnosed 17 years ago (had a major event). I have only ever taken, when necessary: pain tabs of various types before bedtime, valium 5mg or Baclofen for muscle spasms, glucosamine at 1500mg for joints and an anti-depressant (life-long).

I have had a recent major episode (the end result of a very traumatic incident, as was the first major episode) which affected my eyes and increased pins and needles etc in arms and legs. Bad dizzy spells too. Received 5 days of methyl-pred and a lecture from my neuro on why I've never been on immunomodulators.

Yes, I've had pins and needles, spasms, vertigo, leg weakness etc etc for nearly 2 decades but I just pushed on and rested when absolutely necessary. If my right arm is weak today I use the left, if my legs feel wobbly I pick a task I can do sitting down. I have found that the more I do the better my activity level is, but the more I lie down the sorer my body gets and the weaker I feel. Having said that I do now have a mobility scooter for shopping trips, but continue to potter around caring for wildlife, keeping reptiles, restoring antique furniture, maintaining a 49 year old VW Beetle, at a steady and purposeful pace. This is just me and my MS.

I am now being asked to start Copaxone. After 6 injections I'm not very happy because the more I read the more I feel this route is still so full of questions without answers. How much more disabled will I get if I just continue the way I was going as opposed to daily meds? Who knows, and if there is only a potential 30% positive result for my CNS with immunomodulators are the side effects worth it? I feel like Nakamura13 and hope others can share their opinions and experiences.

[HarryZ]

It's pretty much impossible to answer your questions because due to the very nature of the disease (relapsing/remitting) and the huge difference on how the current drugs affect each patient, there is no one treatment that works for all.

If you believe the companies that produce the medications then you would start on one of them immediately. But you only need to read the widespread comments that patients who use them to discover that they really aren't all that effective. And the side effects can be fairly devastating to many.

My opinion....read as much as possible about the disease and really learn as much as possible about all the treatments that are available, including diet and other alternative methods. Be well informed before making any decisions. It's really a trial and error procedure at best but your body will tell you what works and what doesn't.

Harry

[NAKAMURA13]

What are you guys doing specifically that is bettering our disease, you think. Like i am doing the Paleo Diet, no gluten, and exercise 6 days a week. I take multi-vitamin(Isotonix), coq10, vitamin d, calcium & magnesium. I'm going for a blood test this week to find out if i have any vitamin deficiencies.
Any kind of input is very helpful.

[jimmylegs]

hi nakamura, i'm chiming in here so that you'll have access to further reading via my 'signature' links.
can you specify in detail, which tests you plan to have done this week?

[Scott1]

Hi,

There are a couple of us who have done things that overlap and other things that differ and had some success. I understand your frustration with medications but the marketing is not the stuff to do your research on. JL will give you some useful ideas but you have to do something proactive yourself. It has taken you years to become unwell. Don't think you will swallow a magic bullet and become suddenly well. It will take some time to get better. A single prong strategy just doesn't seem to work. You will need to do several things. It will be no surprise to many of us that a single medicatin isn't delivering you a solution.
Have a look through the treads and see what you can follow and what makes sense. JL has a long thread ,I have a shorter one. Annesse is an interesting author and Leonard has a differing view again. Read the links that people post. There is so much stuff here.
Just draw from the lot of it and always ask the question- does this help me?
I think you are a bit hard on the medications. Don't be dogmatic, just pragmatic.
Regards

[jimmylegs]

fyi, the essentials of my long thread are concentrated in the first post, which i try to keep updated to a reasonably current opinion (that's why it's latest title includes 'summary points page 1 post 1). i do think food and nutrition are foundational. nutrition is the only treatment i can think of that invariably results in death if withdrawn, regardless of the illness in question.

[NAKAMURA13]

i'm taking a vitamin b,d,c,a deficiency blood test. Also looking for any kind of allergy. Any other suggestions on what kind of test to take? I don't think my docs here are too thrilled that i'm telling them what i want to do. oh well??

[Scott1]

Check if you are IgG positive to EBV or CMV

Regards

[jimmylegs]

get serum zinc done. really important, related to immune response/allergy, ability to utilize vit a and vit d, among many other things.

[Scott1]

On reflection, you may as well get them to do the following as they have all popped up in discussions-

Chlamydia Pneumoniae Serology,
General Urine Biochemistry,
Serum Androngenic Hormaone Investigation (if male),
Herpes Simplex Antibodies,
Serum Insulin
Plasma Homocysteine
Fasting Plasma Amino Acids
Serum Lipid studies
Uric Acid levels
Iron Studies


That should show a few abnormalities

Regards

[jimmylegs]

here's how all that links to zinc. besides being known to be low in ms patients, zinc does seem to be a lowest common denominator for a lot of things with suspected connections to ms.

Effect of Zinc Supplementation on Incidence of Infections and Hospital Admissions in Sickle Cell Disease (SCD)
http://idpas.org/pdf/2687EffectOfZinc.pdf
"Mycoplasma and Chlamydia pneumoniae cause the most common infections associated with the acute chest syndrome [20] in SCD patients. ... Zinc supplementation in zinc deficient subjects (Grs A and B), resulted in an increase in zinc concentration in the plasma and cells, an increase in IL-2 production, and a decrease in the incidence of infections."

(and by the way, sickle cell disease is a protein folding disease, and proper protein folding relies on zinc in its structural role)

Zinc status and serum testosterone levels of healthy adults.
http://www.ncbi.nlm.nih.gov/pubmed/8875519
"Zinc supplementation of marginally zinc-deficient normal elderly men for six months resulted in an increase in serum testosterone [an androgen] from 8.3 +/- 6.3 to 16.0 +/- 4.4 nmol/L (p = 0.02)."

Topical treatment of recurrent herpes simplex and post-herpetic erythema multiforme with low concentrations of zinc sulphate solution
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract
"The preventive effect of low concentrations of zinc sulphate solution in recurrent herpes simplex of the skin and oral mucous membrane is reported."

Topical application of zinc-solutions: a new treatment for herpes simplex infections of the skin?
http://www.ncbi.nlm.nih.gov/pubmed/6155033
"Eighteen patients experiencing 22 episodes of recurrent herpes simplex skin infections were treated with topical applications of a solution containing 4% zinc sulphate in water. In all patients, pain, tingling and burning stopped completely within the first 24 hours of zinc therapy. Crusting occurred within 1-3 days and no adverse effects were observed."

Effect of Zinc Supplementation on Markers of Insulin Resistance, Oxidative Stress, and Inflammation among Prepubescent Children with Metabolic Syndrome
http://www.ncbi.nlm.nih.gov/pubmed/21028969
"In [both] groups, hs-CRP and markers of insulin resistance decreased significantly after receiving zinc, but increased after receiving placebo."

Effect of Zinc Supplementation on Serum Homocysteine in Type 2 Diabetic Patients with Microalbuminuria
http://www.soc-bdr.org/rds/archive/6/1_ ... ex_en.html
"Zinc supplementation reduced serum homocysteine and increased vitamin B12 and folate concentrations in type 2 diabetic patients with microalbuminuria."

Oral zinc therapy normalizes serum uric acid level in Wilson's disease patients
http://www.ncbi.nlm.nih.gov/pubmed/3777013
"Although s-UrA levels were low before oral zinc therapy (mean +/- SD, 1.60 +/- 0.20), they increased (mean +/- SD, 2.63 +/- 0.32) to within normal range (2.8-8.0 mg/dl) after therapy."

Zinc Deficiency-induced Iron Accumulation, a Consequence of Alterations in Iron Regulatory Protein-binding Activity, Iron Transporters, and Iron Storage Proteins (in vitro)
http://www.jbc.org/content/283/8/5168.abstract

i'd say, if you want to keep it to one test, go for serum zinc.

[mrbarlow]

I took Rebif from November 2010 to February 2012 and then stopped due to change of job & Country of Residence. Since stopping I have felt so much better in 101 different ways.

I will add that along side the Rebif I have been on Helminthic Therapy, Paleo orientated diet, supplements and a moderate cardio vascular exercise regime. So far so good but only time will tell.

I am not completely negative about DMD's - I certainly think they are useful post diagnosis whilst you get your house in Order. Jimmy Legs advice in this regard was very useful.

[mandyc]

All good reading material and many different ways of treating and dealing with MS. I think Copaxone is prescribed for newly diagnosed people as it seems to slow the progression of the disease early on. But in my case, is it useful after being diagnosed 17 years ago? I'm still thinking of whether it has benefits for me (38% effective?).