Question from the Netherlands

A forum for the discussion of antibiotics as a potential therapy for MS

Side effects

Postby BalsaBoy » Thu Mar 17, 2005 6:50 am

Hi Sarah

I went to see my GP a few days ago with a very sore throat. I had to plead with her to prescribe me antibiotics as she said that they had been told to cut right back on giving out antibiotics due to MRSA.

Have you or David heard anything about this?

James

ps I got my prescription and it kicked in right away.
User avatar
BalsaBoy
Family Member
 
Posts: 81
Joined: Mon Mar 14, 2005 4:00 pm

Advertisement

Postby Anecdote » Thu Mar 17, 2005 8:32 am

Hello James,

Yes we have and it is often the case that antibiotics have been too freely prescribed and often when they are not really needed. Thus resistant forms of various diseases have been developing. Sometimes people demand them for things where they aren't at all appropriate and often were given them just to shut them up. David as a consultant microbiologist, is in the front line of trying to stop this unnecessary over prescribing. The long term courses of antibiotics used by both people following the Vanderbilt protocol and that of my husband were carefully developed to avoid the dangers of any resistance developing. Take something like tuberculosis: if the treatment for this is followed properly, the disease can be got rid of. It is a long treatment, though, so if not followed through, the disease becomes resistant, and resistant forms can then be passed on to other people. Doxycycline is something that people can take on and off for years without resistance developing, so is ideal for this treatment where you eventually take booster doses every two or three months.

So basically your GP was right to be cautious, but the fact that it kicked in right away showed that you needed it. So do make sure you complete the course, because that is another thing which has caused problems: someone feels better so stops the antibiotics before time, the infection has not completely gone and lo and behold next time you get a sore throat caused by the same pathogen, the same antibiotic might not work.

Glad you are feeling better!

Sarah

ps: I would not normally be anything like as prompt in replying, but I was scanning in some photographs on my computer, which I need to use in a painting I am working on. So back to the painting now! :wink:
.
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby snackhand » Thu Mar 17, 2005 4:11 pm

Hi Sarah,

Thank you for answering,yesterday I went to see my GP and handed him lots of information about Cpn and the antibiotic treatment.He has a lot of reading to do before he can come to his point of view.

In Holland I here mostly that long-term treatment with antibiotics will affect your health in a negative way.

I also went to take a look at your paintings on your website,they are beautiful,especially the tulips (I don't say this because I,m Dutch :lol:)


Regards,take care,Annemarie
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

Postby Anecdote » Fri Mar 18, 2005 6:41 am

Hello Annemarie,

Yes, it is kind of what you hear here too, but if you read my reply above to James, you get the view from an expert in the field (my husband.) The last thing he would want to do is affect anyone's health in a negative way, but especially mine. Having waited until the age of 44 to marry me, for the first time, he is hardly likely just to want to throw me on the scrapheap. I started this treatment somewhat reluctantly, not really believing it would work, but it did, and I have certainly suffered no ill-effects in any other way.

I'm glad you liked my tulips, because, quite honestly, I was a bit displeased with them: I could have done them better, but I was losing control of my hand at the time. They were quite a struggle. I aim to do better this year as soon as they are in flower. Next year I aim to visit Keukenhof again. :D

Take care,

Sarah
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby snackhand » Fri Mar 18, 2005 11:50 am

Hi Sarah,

I believe you are a very modest person,too modest,if I look again at your tulips.

And yes,I've read what you wrote to James,I already was aware of these things,but it seems that none of the people I've seen in my neighbourhood ,know much about long-term effects,and are afraid of prescribing in my situation.

It's a releave that I can come to England when I have used all my options here.

Take care,

Annemarie
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

Postby Anecdote » Sun Mar 20, 2005 9:45 am

Hello Annemarie,

No, I don't think I am inclined to modesty with my painting, 8) but over the last few years I had felt I was declining in ability. Difficult to put a finger on it, but it was certainly happening. I was taking far longer to get anything finished and seemed to constantly make stupid mistakes. When working in oils, it is not so serious because you can paint over something, but when you keep doing it and are working to a deadline at the same time, you can get a bit desperate. The stems were the most difficult things with the tulips: I had to keep turning the paintings sideways to do anything at all with them, difficult when they were quite big paintings, and wet! Anyway, that's all in the past now.

You said "It's a relief that I can come to England when I have used all my options here." However, another option is that you
could always ask your GP to write to David asking him to explain why long-term treatment with antibiotics will not adversely affect your health. Perhaps correspondence doctor-to-doctor might be absorbed more readily, especially doctor-to-'expert in antibiotics who is not afraid to treat his wife with them'(!) He also has the advantage in starting out his training in neuro-pathology. We might in this way start a bit of cross-border grass-roots cooperation. :wink: You and I, after all, live a lot closer than, say, someone in Michigan to someone in Tennessee! David works for the General Hospital in the morning, sorting out all the general microbiological stuff, as one of two and soon to be three consultants, then pursues his special interest in CPn in the afternoon.

Take care,

Sarah
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby snackhand » Sat Mar 26, 2005 7:40 am

Hi Sarah,

Thank you for your kind answer,when the time is right I will ask my GP to
contact your husband.

It will take some time now,last week I have become very ill,new bloodtests show that my liver is infected,i also have an icterus,but no stones.

Maybe its a hepatitis, a toxic(avonex?) or viral one,tests next week wil tell.

When I am feeling better,I will come back

Take care and Happy Easter,

Annemarie.
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

hepatitis

Postby snackhand » Thu May 12, 2005 1:53 pm

Hi Sarah,

A -for the time being- last message from me,I had a toxic hepatitis,caused by avonex,wich I used for six years.

I can't take interferon anymore for the rest of my live and my blood has to be controlled always when I have to take medicins.

I don't know if antibiotics in this case is still an option for me,my neurologist says it is not,but also has no other options for me,maybe gamma globuline in the future,but I don't know if I would like that.

I think I must wait untill my liver is completely recovered and then start over again,the enzymlevels in my blood are still very high at the moment,although the icterus has dissapeared after five weeks.

I will follow everything that's written here on the forum and hope that after a few months I am ready for antibiotics.

Take care,
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

Postby Anecdote » Sat May 14, 2005 8:44 am

Hello Annemarie,

I am very sorry to hear that you had toxic hepatitis caused by taking avonex for six years. You must be feeling quite awful at the moment.

You obviously need to get your liver completely better before trying anything else, however, once it is, maybe antibiotics will be altogether a more accepted route to take. Neurologists are notoriously slow on the uptake if they have to think outside their own enclosed world, apart from a few like Ram Sriram at Vanderbilt, of course. However, General Practitioners may be eventually a bit more forward thinking. In your case, if you had contracted TB, would you be denied the six month antibiotic treatment? No, because of the risk of infecting other people. You might be monitored, but the risk to other people would be deemed too great. In a way, it is a shame that MS or even lyme disease is not infective in the same way, because then you would be treated. :?

So try to keep as well as you can do for the moment, take all the recommended supplements and so on, drink lots and lots of water, and before you know it, you might have a head start at clearing MS from your system as well.

Take care,

Sarah :)

Here is a tulip for you from the Keukenhof:


Image
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby snackhand » Sat May 14, 2005 4:43 pm

:) Sarah,

You are so right by saying if MS was infectious would we not be treated with antibiotics?

After two awfull months I feel almost my old (MS) self again,becoming new hope,also from your last reply and getting a bit impatient.

I drink all the water I can get,eat everything thats eatable,have to gain weight (still twelve pounds to go)and sleep half the day away.

Thank you for the beautiful tulip that maybe once was in the Keukenhof (I was never there) but now became immortal by your hand.


I hope you are doing allright and also hope to thank you myself one day,

Take care,

Annemarie
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

Postby snackhand » Sun Feb 05, 2006 2:49 pm

Hi Sarah and others,

After a long time I am back on stage...... :wink:

Still having MS....meanwhile even secundary-progressive..

I started one week ago with LDN,my GP was so kind to prescribe it...

I am waiting for a call-up to go to Nijmegen in The Netherlands,to Professor De Jong,I´ll tell and give him all the information I have about antibiotics versus MS.

Hopefully his reaction will be positive,this is my last step in my own country,if this doesn´t work,my next step will be UK

Kind regards to all of you

Annemarie
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

Welcome back, Annemarie!

Postby Anecdote » Sun Feb 05, 2006 4:22 pm

Hello Annemarie! Good to hear from you again. Lots has happened since you were forced to drop out for a while. I hope your hepatitis is now better.

To start with, you might care to look at a new site which has been started: http://www.CPn Help.org. This was started a few months back by someone with chronic CPn disease, but this instance showing as chronic fatigue and fibromyalgia. There is lots of information on the site, both from patients and physicians, David being one of them and Stratton from Vanderbilt another. There might be lots of information there useful both to your GP and Prof. de Jong, who might care to contact either David or Stratton.

LDN is a good start and many on one of the antibiotic regimes take this and statins as well.

David has done much updating of his site, especially with regard various supplements, so it would be good to have a really good look at that. in addition to the CPn Help site: http://www.davidwheldon.co.uk/ms-treatment.html

These sections are especially useful:

http://www.davidwheldon.co.uk/supplement_rationale.html

http://www.davidwheldon.co.uk/NAC.html

It would be nice if we have managed to gather enough information for someone to treat you in your own country. It certainly isn't for want of trying!

I am doing amazingly well, back to painting big canvases again, but in acrylic rather than oils, this time, which I must say makes brush cleaning a lot easier. If you take a look both is the Regimens section and also on CPn Help, you will find that a lot of other people are making big strides. The most notable one being Katman, who you can find in both places. She was diagnosed with primary progressive disease in her fifties. She is now 67 and is making amazing improvements both physically and in her MRIs. Like me, unheard of, but a fact.

Here is a picture which I did just before starting on the canvases again:

Take care,

Sarah

Image
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.
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Annemarie

Postby Katman » Sun Feb 05, 2006 5:14 pm

So funny, Sarah,

I was just going to post when I heard my name mentioned! We just came in from the barn, where everyone got extra hay tonight because it is going down to the 30s!

Hi Annemarie, nice to meet you. I do hope everything works out for you. Last July, when I was directed here by Sarah's David, I was already improving but I missed you and Guner. This is a unique place in the world- we are so fortunate to have it.

Rica
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.
User avatar
Katman
Family Elder
 
Posts: 264
Joined: Mon Jul 11, 2005 3:00 pm
Location: North Carolina USA

Postby snackhand » Sun Feb 05, 2006 5:44 pm

Thank´s for your (again) beautiful painting,Sarah,and i´m so glad about your further improvement on antibiotics!
Already printed both sites....looks good and promising!

Hello Rica,nice to meet you,i´ve already read about you and your great improvement,congratulations!

When i have news i´ll be back here!

So long,
User avatar
snackhand
Getting to Know You...
 
Posts: 21
Joined: Sat Feb 26, 2005 4:00 pm
Location: nederland

Postby Anecdote » Mon Feb 06, 2006 5:41 am

Annemarie, you do know that with your avonex induced liver problems you are going to find it very difficult to find a doctor of any persuasion to treat you. You will certainly need someone locally who can keep a check on you. To give you a head start, make sure that the first supplements you make sure of taking are N-acetyl cysteine and Acetyl L-carnitine. I have cut and pasted the details from David's relevant page below. You can obtain both in high quality, high dosage but reasonably priced amounts from here: http://www.iherb.com/index.html I cannot stress this need enough. However, with these and the LDN you might well be amazed at how well you do. Keep in touch.

Sarah

N-acetyl cysteine ~ Selenium

Reduced glutathione (GSH) neutralizes peroxides in the presence of a peroxidase which has 4 atoms of selenium (Se) bound as seleno-cysteine moieties. During this process GSH is oxidized and is then regenerated by a reductase. Glutathione reductase is increased in the CSF of patients with MS. [Calabrese V et al., Changes in cerebrospinal fluid levels of malondialdehyde and glutathione reductase activity in multiple sclerosis. Int J Clin Pharmacol Res. 1994; 14(4): 119-23.] By contrast, low levels of glutathione peroxidase were found in MS patients. [Mai J et al., High dose antioxidant supplementation to MS patients. Effects on glutathione peroxidase, clinical safety, and absorption of selenium. Biol Trace Elem Res. 1990 Feb;24(2):109-17.] Taken together, these data suggest a disordered glutathione metabolism in MS, which accords with the evidence that oxidative stress is a part of this disease. Inherited glutathione synthetase deficiency has been described; it is accompanied by progressive peripheral and central neurological disorders. [Meister A, Larsson A. GSH synthetase deficiency and other disorders of the g-glutamyl cycle. In: Scriver CR, et al., eds. The Metabolic and Molecular Bases of Inherited Disease (Volume 1). New York: McGraw-Hill; 1995;1461-1495 (Chapter 43).]

GSH is a tripeptide composed of glutamate, cysteine and glycine. It is thought not to be absorbed intact from the gut and must be made in the body. Glutamate and glycine are well represented in the diet; cysteine less so. The concentration of this amino acid is thus the limiting factor in the synthesis of glutathione. The best form of supplementation is N-acetyl cysteine (NAC) which is safer than cysteine.

Supplementation of diet with NAC in MS patients elevates levels of GSH peroxydase. [Mai J et al., High dose antioxidant supplementation to MS patients. Effects on glutathione peroxidase, clinical safety, and absorption of selenium. Biol Trace Elem Res. 1990 Feb;24(2):109-17.] Selenium is required for the synthesis of GSH peroxydase (see above.) Selenium levels are low in patients with MS. Mai and colleagues (above) found that supplementation with selenium normalized the low levels of this element.

N-acetyl cysteine and selenium would seem to be useful supplements for restoring GSH stores; this is particularly important as GSH plays a part in the regeneration of other antioxidants.

Acetyl L-carnitine

Carnitine and acetyl L-carnitine (ALC) facilitate the transport of fatty acids across the mitochondrial membrane. The acetyl group of ALC is used in the biosynthesis of acetyl-CoA, a key intermediary in the generation of cellular energy. Depletion of ALC increases mitochondrial stress. Supplementation with ALC reduced fatigue in Chronic Fatigue Syndrome [Vermeulen RC, Scholte HR. Exploratory open label, randomized study of acetyl- and propionylcarnitine in chronic fatigue syndrome. Psychosom Med. 2004 Mar-Apr;66(2):276-82.] It also alleviated fatigue in MS. [Tomassini V et al., Comparison of the effects of acetyl L-carnitine and amantadine for the treatment of fatigue in multiple sclerosis: results of a pilot, randomised, double-blind, crossover trial. J Neurol Sci. 2004 Mar 15;218(1-2):103-8.]

Peroxynitrite is a strong oxidant capable of damaging target tissues, particularly the brain, which is known to be endowed with limited antioxidant buffering capacity. Inducible nitric oxide synthase is upregulated in the CNS in patients with MS. [Calabrese V et al., Disruption of thiol homeostasis and nitrosative stress in the cerebrospinal fluid of patients with active multiple sclerosis: evidence for a protective role of ALC. Neurochem Res. 2003 Sep;28(9):1321-8.] These authors comment: 'Western blot analysis showed in MS patients increased nitrosative stress associated with a significant decrease of reduced glutathione (GSH). Increased levels of oxidized glutathione (GSSG) and nitrosothiols were also observed. Interestingly, treatment of MS patients with ALC resulted in decreased CSF levels of NO reactive metabolites and protein nitration, as well as increased content of GSH and GSH/GSSG ratio. Our data sustain the hypothesis that nitrosative stress is a major consequence of NO produced in MS-affected CNS and implicate a possible important role for acetylcarnitine in protecting brain against nitrosative stress, which may underlie the pathogenesis of MS.'

ALC has many prophylactic properties. It was found to protect against acoustic damage to the inner ear in an animal model [Kopke R et al., Prevention of impulse noise-induced hearing loss with antioxidants. Acta Otolaryngol. 2005 Mar;125(3):235-43.]

Reviewing the literature, Ames and Liu conclude that trials of ALC in the treatment of mild cognitive impairment and mild Alzheimer's disease showed significant efficacy vs. placebo. [Ames BN, Liu J. Delaying the mitochondrial decay of aging with acetylcarnitine. Ann N Y Acad Sci. 2004 Nov;1033:108-16. Review.]

ALC treatment was found to be efficacious in alleviating symptoms, particularly pain, and improved nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy. [Sima AA et al., Acetyl-L-carnitine improves pain, nerve regeneration, and vibratory perception in patients with chronic diabetic neuropathy: an analysis of two randomized placebo-controlled trials. Diabetes Care. 2005 Jan;28(1):89-94.]

In a cell culture study ALC was found to protect against damage caused by beta-amyloid (Abeta), a neurotoxic peptide which accumulates in the brain in Alzheimer's disease. [Dhitavat S, Ortiz D, Shea TB, Rivera ER. ALC protects against amyloid-beta neurotoxicity: roles of oxidative buffering and ATP levels. Neurochem Res. 2002 Jun;27(6):501-5.] These authors found that ALC attenuated oxidative stress and cell death induced by beta-amyloid neurotoxicity. They comment: 'Abeta depleted ATP levels, suggesting Abeta may induce neurotoxicity in part by compromising neuronal energy. ALC prevented ATP depletion; therefore, ALC may mediate its protective effect by buffering oxidative stress and maintaining ATP levels.' This is particularly interesting when considering chronic Chlamydia pneumoniae infection; the mechanism of accentuation of oxidative damage by ATP starvation may be similar. Electron microscopic studies have shown that replicating chlamydiae are always found in close proximity to mitochondria; they are obligate energy parasites, their metabolic function being a reversal of that of mitochondria. [reviewed by Stratton CW, The pathogenesis of systemic chlamydial infections: theoretical considerations of host-cell energy depletion and its metabolic consequences. Antimicrobics and infectious diseases newsletter. 1997; 16 (5) 33-38.]

Oxidative damage may be an important factor in neurone-loss associated with ageing. In an rat model Liu and colleagues demonstrated that oxidative damage to nucleic acids (8-hydroxyguanosine and 8-hydroxy-2'-deoxyguanosine) increased with age in the hippocampus, a region of the brain concerned with 'encoding' memory from the immediate circumstance. Oxidative damage to nucleic acids occurred predominantly in RNA. Dietary administration of ALC and / or a-lipoic acid significantly reduced the extent of oxidized RNA, the combination being the most effective. [Liu J et al., Memory loss in old rats is associated with brain mitochondrial decay and RNA/DNA oxidation: partial reversal by feeding acetyl-L-carnitine and/or R-a -lipoic acid. Proc Natl Acad Sci U S A. 2002 Feb 19;99(4):2356-61. Erratum in: Proc Natl Acad Sci U S A 2002 May 14;99(10):7184-5.]
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.
Anecdote
Family Elder
 
Posts: 2098
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

PreviousNext

Return to Antibiotics

Who is online

Users browsing this forum: No registered users