This Is MS Multiple Sclerosis Community: Knowledge & Support

Jeff has a monster migraine (first one) throbbing temples. I'm hoping it's not from mino causing intracranial hypertension. Will check with neuro tomorrow. His vision is OK, (and he's not an obese woman), but he says he's never had a headache like this one. May be at ER before the night is out-
send good thoughts, please
AC

http://bmj.bmjjournals.com/cgi/content/ ... 0/613?etoc

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

More than everything else what impress me AC is that you first do your search and then ask for help-opinions, I do the same!
Wife's exacerbations always start with terrible headache but I don't want to upset you as Jeff's migraine is probably due to mino, I have heard again of this symptoms due to ABxs!

AC
When I first started the abx protocol I had a few terrific headaches. And I am not one who often gets headaches. They were the worst I have ever experienced. I know it was the introduction of the various antibiotics and I feel it was a sign that they were working-you know the saying "feel worse before you feel better"? Well that definitely applied to me. I found that drinking Emergen C helped tremendously. If the headaches are bad he will probably need to drink more than 1 pack a day. And if it persists he should probably keep it up every day even on days that he doesn't have a headache. See if this helps!
Lori

Thanks Lori and Dim...
Jeff' s feeling much better this morning, thank God. Will do the emergen-C and call his doc. So far no visual issues. This could just be a coincidence, but he was in agony last night, and I could see his pulse throbbing at his temples.

Glad to have the support and immediate "world-wide" help.
blessings,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hypertension may cause also headaches so give Jeff plenty of water, more garlic and mint (herbal) with his tea (prefer the rooibos that has no caffein)!
Cheers

I started a course of doxycycline after having a 15 year long Lyme Disease infection (I found my medical records from May 1990 documenting the onset of the disease after having a tick removed by a Dr and a positive test for Lyme that was misinterpreted - I was diagnosed with Lyme in 2005 as a result). I developed severe long lasting headaches (8 hours/day) but these were not due to a reaction to the Doxy, but from the herxheimer effect, which is a side effect of treating spirochetal diseases with antibiotics. A sudden amplification of symptoms upon starting antibiotic treatment, for diseases that have MS like (or from my perspective, Lyme Disease like) symptoms, may indicate that spirochetal infection is the underlying causation of the disease, with LD as the likely candidate.

Thanks Duncan, it isn't always the result of a spirochetal infection though, since I had a sudden, two week long increase in symptoms but my MS was caused by a chlamydia pneumoniae infection. I never had a headache, though, except pressure headaches before thunderstorms.

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.

Very interesting! It is exciting that Drs have finally gotten around to treating MS with Abx.
I read the results of 4 MS trials of Mino, involving 40 people, in Germany, the USA and two in Canada. of those 40 people, over 30 had a dramatic improvement in symptoms, and those who did not improve, typically dropped out rather than completing the trials. I also read several reports of long term trials of mino for RA, and they went well also, especially in terms of safety, which concerned me before I opted to try mino long term.

There is a large scale, 2 year Mino-MS trial of 200 people underway now IIRC, in Canada, which is being led by the U of Calgary team.

Welcome, Duncan-
Thanks for your concern. We had my husband checked for Lyme last year by Igenex labs in California, and his results were negative for Lyme, but he did show antibodies for a non-specified spirochete infection. The antibodies indicated a prior, rather than on-going, bacterial infection. We've never tested for cpn, although I know from all my reading that the tests are never 100% anyway.

He is back on mino, at a lower 100mg. dosage (200 mg. when the headache appeared), no further headaches, he's feeling much better. It may have been a herx reaction, but his neuro wanted to be better safe than sorry with the intracranial pressure issue. Blurry vision with headache is the tell-tale sign to watch for in tetracycline reactions.

Check out all the antibiotic threads, and you'll see that this treatment is gaining traction all over the world. I wish you all the best with your Lyme treatments.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello Everyone,

AC...how's Jeff doing on the MINO these days? Also, has anyone heard or seen any blogs about the current trial?

thanks,

Jack

Hi Jack-
Jeff had another one of the intracranial headaches with blurry vision, and he stopped the mino after speaking with his GP. His blood had hypercoagulation/inflammation issues, and the mino didn't work for him. His current program involves enzymes and antioxidant supplements to help his vasculature, and keep his blood moving. He's been doing quite well...improved energy and no relapse or progression since his dx in '07.
Here's his program
http://www.thisisms.com/ftopict-6318.html

I know Viper (Brock) is still on mino- Here's his report-
http://www.thisisms.com/ftopict-4070.html

Many people have great success with the antibiotic route. Hope you find the program that works best for you-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thanks Cheerleader....

Cheerleader,

thanks for the info/i'm not able to download your link/but will when i go home in a couple of weeks/question-i lived in SO CAL while in college and for years after/been living in B.C. for the last 8 yrs when MS started...do you find living there helps JEFF? I 've pasted this research that i just received from the Vancouver Ms Society enews....


Researchers demonstrate a potential association between monthly ambient sunlight, infections and relapse rates in Multiple Sclerosis
(Neuroepidemiology 2008, 31: 271-279)
Medical Update Memo
November 13, 2008

Summary

Monthly variation in multiple sclerosis (MS) relapses has been found. However, the relationship between seasonal environmental factors, infections, serum vitamin D [25(OH)D] and MS relapses is undetermined. Dr. Helen Tremlett from the University of British Columbia and colleagues studied a group of people with relapsing-remitting (RR) MS patients in Southern Tasmania for approximately 2 years. Their objective was to determine if monthly ambient environmental factors, estimated serum 25(OH)D, upper respiratory tract (URT) infections and relapse rates were associated. This work was funded in part by the MS Society of Canada.

Details

Over the course of 2 years, researchers measured the total ultraviolet radiation modulated by human skin, (erythemal ultraviolet radiation or EUV), the occurrence of relapses,and infections monthly. They also tracked the total amount of serum 25(OH)D .. The body produces 25(OH)D with exposure of bare skin to ultraviolet radiation, which is then ultimately converted into vitamin D3..

It was determined that the lowest relapse rate occurred in February (mid-late summer in Tasmania) versus March-January (Tasmainian winter). Monthly relapse rates correlated with: (1) prior exposure to ultraviolet light, (lag time 1.5 months); (2) Upper respiratory tract (URT) infection rates (no lag); (3) 25(OH)D (no lag). The association between URT infections and relapses was reduced after adjustment for monthly EUV.

This study demonstrates that relapse rates are inversely associated with EUV and serum 25(OH)D levels and positively associated with URT infections. The lag time observed between EUV but not 25(OH)D and relapse rates is consistent with a role for EUV-generated 25(OH)D in the alteration of relapse rates. This study suggests that low exposure to ambient sunlight and low serum 25(OH)D are associated with relapses in MS. Future work should consider the observed association and the complex interrelationship between UV, vitamin D, infections and relapse rates.

National Research and Programs

Hey Jack-
Jeff developed his first big flare in February while living in so cal. He is very fair, and used to stay out of the sun/wear lots of sunscreen to keep from burning. Now he gets at least 15 minutes a day, plus he takes 4,000IU vitamin D supplement. I think this is part of the puzzle, and why he's been stable, no relapses or progression for almost two years.

I write about it in my paper on endothelium dysfunction. Vit. D is a very important part of the MS equation, but I don't think it's all of it.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS