twitch, tremor, shake and flicker

[Grumpster]

HEllo to all you out there in the forum.

I have posted some pretty heavy stuff in the past. Possibly this one is less depressing, but somehow I doubt it. Lately I have started having a lot of bizarre symptoms. I get these twitches and tremors that are almost a constant. When I try to flex or contract my muscles I shake pretty badly. I also feel like my whole body, vision, balance, etc is flickering, a mega short circuit if you will. I am now looking into basically anything that might help. I have tried MJ for the tremor, but in the ultimate irony it makes me worse. I immediately lose balance, tremor increases and my optic neuritis gets worse (Geesh at least god could have left me with something for relief. ) Anyway, I am admittedly a skeptic when it comes to some of the snake oil type "remedies" out there. However, I am in a virtual nose dive and maybe a little snake oil will help when I hit the deck full speed. What I am trying to say is that despite my waryness of being scammed I really am looking for some alternative medicine right now. I know there is a lot on this site about that, but my ON makes it hard for me to read on the computer and search through the site.

I am looking at the Stratton/Wheldon reg and would like anyone's comments good and bad on that. I also am open to peoples suggestions on what has helped them, anecdotal or not.

I am on rebif, statins and wellbutrin. I also drink beer, probably more than I should. I want to stop the wellbutrin because I do not think it is helping me much, but I still at times have some suicidal ideation and I am a little scared to just quit the antidepressants.

I must say that I do feel like kind of a punk ass whiner when i read some of your stories of what you are dealing with and see the incredible strength and personal fortitude many of you have demonstrated. I guess I am not that strong.

If anyone has something they want to share I would appreciate it.

I believe that if things do not change for me soon I will be pushing up dasies somewhere.

Thanks for your time

[sojourner]

Grumpster,

I can relate to you my husband's experience with the Wheldon/Stratton abx protocol.
Dx'd 2004, Avonex-20 months, 3 Tysabri infusions before it was pulled.

He has been on abx for almost 17 months--he stayed on Avonex until it was clear that this abx stuff was rockin' (about 1 month). He has had a two step forward one back reaction to treatment similar to others. His general trend line is UP. He likes to say abx has been, "like a good 10 year stock- It has its ups and downs but always increases over long periods--" That is how he feels about his general condition. In other words, he feels better.

He has taken a slower approach to the protocol than others because he needed to continue working while treating, and he must be VERY high functioning for his job.

Needless to say the Wheldon/Stratton protocol is far from snake oil. There is sound science behind the idea that MS has a possible infectious cause, and there are many other doctors besides W and S who believe that and treat accordingly. My husband is treated by one of those docs (trained at Yale, by the way).

I am in no postion to advise you but, "What do you have to lose?" You sound too young to be dealing with all of your issues, the abx used are really pretty safe (safer than many standard MS drugs) and with a little special care, one can stay on them for long enough to do a lot of good. Even staying on a CRAB is no problem if one really wants to hedge their bets.

I invite you to CPn Help. There are many patient stories there that you might find fascinating and of course, I keep a pretty detailed blog there under Sojourner.

As an aside, my husband's most recent MRI shows no change from last year---we take that as very good news, but we also know that many times MRIs don't tell the whole picture. What tells us we continue on the right path is his improvement in his functioning, his overall well being and his lack of exacerbation.

best to you,
Lexy

[dignan]

You mention you are taking rebif and a statin. If you don't absolutely need the statin for cholesterol reduction, you might consider discontinuing it based on this abstract from the May 2007 American Academy of Neurology session:


A Double Blind, Placebo Controlled Trial of Atorvastatin in Combination with Subcutaneous Interferon Beta 1a in Persons with Multiple Sclerosis

Gary Birnbaum, Irfan Altafullah, Golden Valley, MN, Anthony Reder, Chicago, IL

OBJECTIVE: To determine if treatment with atorvastatin, in combination with subcutaneous interferon beta 1a, was safe, and had a salutary effect on the course of MS.

BACKGROUND: Preliminary data suggest statins may modify MS disease activity. We hypothesized that treatment with a beta interferon and a statin could be tolerated and would result in increased therapeutic benefits.

DESIGN/METHODS: Subjects with clinically definite, stable MS, ages 18-56, on subcutaneous interferon beta 1a for at least 6 months, with no drug toxicity, were randomized into 3 groups, and treated for six months with either placebo, atorvastatin, 40 mg per day, or atorvastatin, 80 mg per day, with follow-up 3 months after stopping oral drug. Subjects had monthly blood and urine tests, blinded neurologic exams and brain MRIs at Months 0, 3, 6, and 9. MS relapses were treated as needed. Primary outcome measures were safety parameters with secondary outcomes of new or worsening MRI lesions and/or clinical relapses. Data were analyzed with Chi-square and Student t-test analyses.

RESULTS: 29 subjects were enrolled. Data could be analyzed for 24 subjects, 18 females and 6 males, ages 28 to 56. EDSS ranged from 1 to 5.5. Two subjects on high dose atorvastatin withdrew due to myalgias and elevated liver enzymes. New and enhancing MRI lesions and/or relapses were noted in 9 of 13 subjects on atorvastatin, either 40 mg or 80 mg per day, and in 1 of 9 subjects on placebo (p=0.004 for differences between the two groups). New lesions occurred as early as 12 weeks following atorvastatin and continued up to 12 weeks after stopping the drug.

CONCLUSIONS/RELEVANCE: Combination treatment of MS with subcutaneous interferon beta 1a and atorvastatin, while well tolerated, resulted in increased MRI and clinical disease activity.

http://www.abstracts2view.com/aan2007bo ... 7L_S32.005

[lyndacarol]

Grumpster, I am not a physician, but I am a fellow MSer and feel the need to reply to your posting. Please know that MANY will read your words here, want to respond, but don't have the answer. We do want you to feel that you have many friends here.

Since you are on prescription medications, I assume you have a doctor--I hope he is compassionate and you feel comfortable with him. My suggestion is to start there with a thorough evaluation of the situation--every blood test possible (including for cholesterol, a fasting insulin test, and for liver function, among others--though I do not see any value in MRIs, your physician may). Try to see a nutritionist--follow the healthiest diet you can imagine, even if you can only do it for 3 months, or 6 months, or 9 months. See if you notice ANY changes--give up artificial sweeteners, give up trans fatty acids, eat more fish, etc.--some people see improvement with diet and it can't hurt you.

Keep a journal recording symptoms and changes. Just to feel you are doing SOMETHING may help your frame of mind. To post and keep in touch here may help you, but may also help one of us in something you do or say or come across in your personal search. Remember, we are all in this MS boat together; we must care about each other.

[jimmylegs]

grumpster i imagine you know what i'm going to say - get your bloodwork for vitamins and minerals done.

b100-complex (maybe throw in extra b1, b12), 4000IU per day D3, plus a multimineral, for say 3 months to start, then get more bloodwork and see how you go. chin up, bud!

[Frank]

Dear Grumpster,

I've recently changed my therapy from Tysabri to Wheldon ABX Protocol together with LDN and currently I do feel a significant improvement.
You might want to read my diary in the antibiotics forum.

Maybe also Vipers Log on the regimes forum might be interesting for you.
He just added Minocycline to his regime and does pretty well, as far as I have read...

--Frank

[SarahLonglands]

Grumpster, I can also relate my experience with the Stratton/Wheldon regimes. Firstly please don't think that I am only writing here because I am married to David Wheldon and want to promote anything: it is not a snake oil treatment, but one grounded firmly in research and no money exchanges hands.

Four years ago almost to the day my MS had not only turned into secondary progressive disease but was progressing so rapidly that neither David or my neurologist thought that I would last more than a couple of years. I didn't, because I had been affected in such a way that I thought everything was happy and shiny and I was getting better, despite only being able to walk a few yards unaided. I had lost the use of my right arm and it had been that way for several months, showing no signs of recovery. As a professional fine-artist I should have been distraught, but I wasn't, I laughed.

David is a hospital doctor specializing in microbiology. He had also trained in neuropathology and when he was training had seen several end-stage MS people. He always thought an infection lay at the root of the disease, as did many people at the end of the nineteenth century. This theory gradually fell by the wayside because the pathogen could never be found. In the nineteen sixties the auto-immune theory really took hold and it has been that way since. However, in 1987, chlamydia pneumoniae was found to be a pathogen, although at the time it was thought to cause only a low-level community acquired pneumonia. Much research was done over the next few years and it was found to be implicated in many other things. At Vanderbilt University, the research came to centre on multiple sclerosis as being one of the diseases. It was found in the CSF of over ninety percent of patients with MS. You will be able to find quite easily the claims and counter claims surrounding this, so I won't repeat them, I will just say that one evening David came home with a packet of doxycycline, anxious that I should take some. I was unsure: I had only been prescribed antibiotics for a few days twice before and he was telling me that I would have to take them for at least a year. I said I would start in the morning, he said start now, two capsules. Apparently I slept for most of the next three weeks, but when I woke up, I was clear of mind and of speech and I have been getting better ever since. I have not had an MS episode since then and the three follow up MRIs I had all showed an improvement. The last one was the same as the one a year before, but there was nothing new at all. This is not normal in progressive disease. I am also back to being able to work full time as an artist. When my head became clear, I was at first quite depressed when I saw how bad I really was, but bit by bit, I was able to regain everything I had lost with my arm. I do still have a lot to improve upon with my walking. I guess that is never going to be as good as it was, but I will certainly reach far, far beyond fifty now.

Sarah

[Grumpster]

I want to thanks all who have replied thus far. I certainly did not want to refer to the abx protocol as snake oil. I was actually refering to some of the other reginines out there that are in my opinion very suspicious, such as bee sting treatments and wheat grass enemas. (I have a background in health fraud investigations from a previous life, pre-MS). I am going to look into this but my main question is: if my neurologist does not agree that this is something they can support then how do I get the prescription antibiotics? I am a Kaiser Permanente member and it is pretty hard to get them on board with alternative treatments sometimes.

Thanks to all who have responded thus far. Any additional replies are truely welcome.

G

[SarahLonglands]

Hi G, its the snake oil merchant again, about to go off for dinner!

Lots of people don't do this through their neuro but through their GP. Since you are in California, you might consider liasing with Stratton over at Vanderbilt. He willingly advises GPs on this from all over the US. Send me an email if you want contact details and other useful info.

Sarah

[tory2457]

Hi Grumpster,

Sorry your having a hard time, but then again this disease will mess with our heads.

I too am treating my MS with antibiotics and am improving. No snake oil here,,,I have proof I have a bacteria

so nor is my treatment alternative, it's a treatment.

don't give up----!
lately I say I'm not uncommon-might we share the same bacteria? I'll go with the research and say more than likely.

the best,
tory

[Grumpster]

I am setting an appointment with my GP to discuss the protocol and hopefully start ASAP. Have any of you been doing this while also on interferon? I am curious if that is well tolerated. I am on Rebif (yuck).

Thanks!!

[viper498]

Grumpster,

I am a week into Minocycline and I also take Rebif. I have had only a minor adverse affect, and it was intestinal. I say go for it bud. You have nothing to lose. I may decide to start the CAP protocol, but I am waiting to see how this Minocycline treats me so far. As soon as I started taking I took two steps forward, but I did have a half step back with this strange sensation in my back, other than that no problems. In fact, at least for today, the numbness that had crept back by some small degree has gone away for the most part. Still slight numbness, but better.

JUST DO IT! If your GP won't prescribe you, look around for someone who will. I look at it as the sooner the better. The empirical evidence is certainly there with many people saying it is helping them. I can't think of any other treatments that are returning this sort of good feedback, so for whatever the reason, its worth the shot. I'll shut-up now..

Brock

[tory2457]

Grumpster,

Sarah I'm sure will help you get started. I can't agree more with Brock, What do you have to lose?

Am I right to assume you are PPMS? and not too many "drugs" are effective?

As for the interferon, my guess is that you can continue while in abx treatment. I know that all I've ever talked to said it was their choice to remain using a disease modifying drug (just no steroids).

Like Brock I can't wait to hear how things go.

tory