Fighting the SPMS beast

Hi folks, I'm new here, having found this place from PlaintalkMS.org. There, I learned about C. Pneumonia, and it really hit home. See, most every year since I was 10, I've had walking pnuemonia, hacking, wheezing, feverish, achy, the whole nine yards, even as recently as two years ago. Seemed a likely culprit to me. So, I've been taking the following: doxycycline 100mg 2x/day roxithromycin 150mg 2x/day flagyli 400mg 2x/day simvastatin 80mg 1x/day I've been getting better, slowly but still, that's better than I had been. I have a looooooooooooong way to go.

Notes on NO and CPni: I had been doing massive doses of Non-steroidal Anti-Inflammatory Drugs, trying to prevent exacerbations. It worked, sort of. I didn't have what I knew as an exacerbation for about a year ... but I did continue losing ability, at a faster rate than before. The anti-inflammatories were all excellent antioxidantsi. I had, effectively, shut down NO in my body, and with that loss, and my blood-brain barrieri shut down, there was nothing to stop the CPn from really going to town. I crashed, massively. I got started on the ABxi just in time to stay alive. The pills were also, alas, darned strong acids, which also ate away at my esophagus. Two dialations, and I still have massive trouble swallowing. Hence, I cannot take any more acids - no NACi nor ALCar for me. Oh well. Anyhow, it's late. Farscape's over, time for bed. See ya.

Comments

Oh, right, I was under the

Oh, right, I was under the impression that the only one of these: "alpha lipoic acid">i, vitamin C, aspirin, acetyl l-carnitine, grape seed extract and tumeric" was classed as an NSAID, namely aspirin.  Everything else is an excellent anti-oxidant, though.  But are they all acidic?  I take all of these apart from the aspirin, which can eat away at your stomach lining, and grape seed extract.  I take them in quite large quantities and have done for the last nearly thirty months, but haven't noticed any trouble.  I would either give up the aspirin if I were you, or switch to enteric coated stuff.....Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

What makes aspirin a drug,

What makes aspirin a drug, and ALA and Alcar not? All are pure chemicals. None require a prescription. All can be bought at a pharmacy. I took massive amounts of these, for over a year, adding more aspirin if I had a headache. In retrospect, that was unwise, but rarely am I able to think clearly in an exacerbation.
Aggressive SPMSi, EDSSi 9, on CAPi since 2005. Doxyi 100mg 2x/day, Azithro 250mg MWF, NACi 2400mg/day, Metroi 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

Willow: terminology is

Willow: terminology is important

The issue isn't whether both things are "chemicals," it's that the term NSAID is used for a specific class of drugs which include aspirin, ibuprophen, naproxyn sodium, and others (not just 'chemicals' which is a much broader term, like saying wine and water are the same because they are both "liquids"). This class of drugs does not include the supplementsi you cited.   Terminology is important because, as a class, the NSAID drugs are known to cause gastric erosion with high doses or long term use. Except for the acidic forms of vitamin C, the the supplementsi you cited are not known to cause gastric distress.

The supplements are each in entirely different chemical classes  and each has different action and effects than the NSAID's. Lumping them together because they are all supposed to be anti-inflammatory is not helpful, since their mode of anti-inflammatory action is different. It also makes it harder to sort out what caused the problems you had.  

Additionally, it confuses people unfamiliar with the difference into assuming the supplements are harmful in the same way the NSAID's are--- when they are not. It may all seem like one lump of problems to you, because they all occured together, but the aspirin usage you refer to is the much more likely culprit of your gastric problems, which are now likely irritated by almost anything, including otherwise innocuous supplements.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

OK, point taken. I forgot

OK, point taken. I forgot that I also took ibuprofin in that pile of pills. Once in a while, I even took steroid pills, until I ran out. Not sane. I know. I was getting quite desperate.
Aggressive SPMSi, EDSSi 9, on CAPi since 2005. Doxyi 100mg 2x/day, Azithro 250mg MWF, NACi 2400mg/day, Metroi 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

Hello MSWillow,I think that

Hello MSWillow,
I think that your best bet is to write to either Charles Strattoni or my husband, David Wheldoni, who will both probably be able to give you more useful advice and information than I can. I'm a bit confused by what you say about the antioxidant">i properties of the NSAIDsi.
Have a look at the following pages, you will find the relevant emails on both of them......Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

The NSAIDs I was taking

The NSAIDsi I was taking were alpha lipoic acid">i, vitamin C, aspirin, acetyl l-carnitine, grape seed extract and tumeric. All are also quite effective anti-oxidants. Unfortunately, all are quite acidic as well, and when taken in large quantities, over time, ate away at my esophagus, which has led to difficulty swallowing, requiring dilation twice now. I'm doing ok, as long as I get either Prilosec, Prevacid or Nexium every day.
Aggressive SPMSi, EDSSi 9, on CAPi since 2005. Doxyi 100mg 2x/day, Azithro 250mg MWF, NACi 2400mg/day, Metroi 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

Willow- You seem to have

Willow- You seem to have some things confused here. The ones which are most likely to to cause gastric distress are aspirin and regular (non-buffered) vitamin C. Your esophogeal problems are most likely from the aspirin (ibuprophen, naproxyn, etc are similar). NSAID means "non-steroidal anti-inflammatory drugs" and the herbs don't qualify. alpha-lipoic is an acid, but only mildly so and can be taken with food to counter this, turmeric and grape seed extract are not acidic, although could be irritating for other reasons perhaps. I can't tolerate anything other than buffered vitamin C, usually in powder mixed with water which I stir and let sit long enough to completely neutralize the acid. Nutricology has a good product, and American Biologics has one called Ultra AB-C which includes quercetin-- an antioxidant">i and antichlamydial.

 

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

From what I read, alpha

From what I read, alpha lipoic acid">i at 600mg had no serum-detectable level, but at 1200mg, it did, so I was taking 1200mg at a time, plus 1000mg vitamin C, and one normal aspirin pill. I forget the dose of Alcar, but that was probably 600mg or so. I added that because it worked synergisticly with ALA, and was said to help repair damage to nerves. The dosages of tumeric and grape seed, again, I don't recall. The damage is done, whatever the source. ALA and Alcar are not herbs, they're chemicals, so I listed them as NSAIDrugs.
Aggressive SPMSi, EDSSi 9, on CAPi since 2005. Doxyi 100mg 2x/day, Azithro 250mg MWF, NACi 2400mg/day, Metroi 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

I'll consider NACi again

I'll consider NACi again after I get my third esophageal dialation. Can still swallow water now, but nothing thicker.
Aggressive SPMSi, EDSSi 9, on CAPi since 2005. Doxyi 100mg 2x/day, Azithro 250mg MWF, NACi 2400mg/day, Metroi 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

Welcome MSWillow- The

Welcome MSWillow-
The problem with the NSAID's is not that they are acid but that they are blood and other tissue thinners (like the BBBi), although this will make your stomach more acid sensitive. I've not heard of NACi causing any acidic reactions, it's an amino acid but not especially acidic in nature, and can be taken with food, with calcium which should act as a buffer, and so on. If you've tried it and gotten the same acid-stomach reactions as to other things, then of course you know your body. There's an acid-food-reducer called Prelief which you can get at drug stores, which is effective at neutralizing food acidity.

Glad you found treatment just in time. Take a look at David Wheldoni's supplementsi page for more support for rebuilding.

 

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral