1st followup since dx

[Anunymouse]

Typing on a tablet,some punctuation is a pain to get to so im skipping most of it.


Ive debated off and on doing the usual background info as far as symptoms etc. but since everything is so varied... I might as well comment on how i farted purple for a month and it would seem almost normal to folks dealing with this garbage, and completely alien to those that arent. So ill skip unless someone wants to hear it.

I got my dx feb 14 this year, worst valentines day in memory. Same day a good friend of mines wife ended up in the er almost dead from a failing heart. So suck in every direction. I read how it takes people years to get diagnosed, i went from fine tuesday to ms wednesday more or less.

I research as a hobby, always have. Tooting my own horn, qualified for mensa in the 2nd grade.

Once id worked through my hangover, first ive had since college, i started reading. Through that i decided that nothing i was reading sounded like a disease, sounded like symptoms. Further reading, decided it sounded more like an infection as a cause. The success and method of lemtrada reinforced that. So further reading lead me to wheldon.

My primary dr referred me to a neuro who said she would give me 1 week of minocycline and that was it. She was humoring me. I asked for a 2nd opinion and got referred to a specialist. While i waited for her i ordered my own meds and started treating myself. I was doing so for a month at least before i met with her, got a new batch of mris, met with her again and she prescribed, strongly, tecfidera.

By those previous mri my brain is fine, my damage is in my spine. Very minor dawsons and *maybe* 1 lesion in the brain. But its the same spot that has show up unchanged for years, i honestly think its just part of my brain. Only a few areas in my spine, but i worry about it. My brain i know can take a few hits, the spine not so much.

By now ive decided to ignore mainstream meds and to do "my own thing" (drs words) at least until the followup, and then decide if im on the wrong path. And that was today.


So last week i spent roughly 27 years trying not to move in the mri machine. My math may be off, but holy cow did that hurt towards the end. Brain and both spines with and without contrast. When i was finally done and i could crack my neck, operator flinched. It was LOUD. Anyways, i got copies and went on my merry. Looking at the scans at home, the 1 lesion that sent me to the er and started this whole mess was noticeable from space on the last scan. This scan, i dont know if i can find it. The rest of the scans just shades of grey to me.

So this afternoon i got to watch my specialist flipping back and forth on the scans. After a while she asks if im taking my ms meds. I say no. After much fighting with the tecfidera people over price they sent me the first month. Its still sitting on the shelf, every pill. And shes back to flipping.

A while later, have you ever taken ms meds. I say no. Back to flipping.

Finally, "youre really lucky".

Going over the scans she points out a couple areas that may be contrasting but says theyre "really really faint". The dawsons, still there but "whispy". My 1 brain spot, unchanged. I think its just my structure.

She says she was really worried about me when we first met due to the spinal involvement, but more than once said shes "breathing easy" now. She says there is nothing active in me right now and given these scans she would not prescribe tecfidera to me, but aibogio (i know thats not spelled right) if i decide i want it. No injectibles, No tysabri, and even if available, no lemtrada. Which is the only ms med im interested in. We discussed the other supplements im on and ill be doing labs to check my d b calcium and other basics. Otherwise, checkup in 6 months.

So it looks like ill be continuiing on this path. Tbh motivation has come and go but ive stuck with it purely because its what i decided to do. I dont feel good, i dont feel bad. Just tired usually, a little screwy from time to time especially when im tired. Pulse weeks, im run down 24/7 so today has been a long day. I figure no matter what, some damage has been done so ill never be 100% again. But im aging so that wasnt going to happen anyway. I just dont want to burden my family and so far it looks like thats obtainable.

Im not doing the full supplement regimine. 3 antibiotics as spelled out in the protocal. Im on flagyll pulse 7, day 4 of 5 currently. I take nac twice a day, unless i forget, all antis at night. General b and a mega dose b12 every morning. Moppers when i think about it. 100k units of d3 a week, split sunday and wed, with magnesium day before and day of d3. I also take around 4.5mg of ldn every night, ive missed it maybe 2/3 times. Off the top of my head, thays my routine. Im sure theres a couple other supplements if i go through my drawer but thats my life in a nutshell.

Oddball symptoms have been few. I havent kept track of them though. I had about a week where i couldnt lift the middle 3 toes of my right foot. They curled fine, the outside toes, no issue. But the middle 3 wouldnt lift or spread. I wear toe shoes to the gym, noticed it when i was getting ready to go. Slipping on a pair of vibrams when your toes dont spread isnt easy.

Other than my ramblings, this was my day. Hopefully i see further evidence of nothing in 6 months.

[SarahLonglands]

Anunymouse, this is excellent news, the best part of it being that you appear to have mystified the neurologist. You naughty man for not doing as you were told!
Sarah

[Anunymouse]

Thanks sarah. Despite my research and my thought process in the beginning of the year i dont think i would have started this routine on my own. At least not nearly as quickly. Finding that someone else had already forged the path and found success at the end helped tremendously. This is such a scary thing to address by basically faith alone. But I was able to hit the ground running (after the hangover). I had a deep seated wish that my scans would come back completely clean, missed that target. But the absence of so much will have to be good enough for this go round.

If things go well i wont have anything to update for 6 months. Hopefully, again, ill be feeling normal by then.

[SarahLonglands]

Anunymouse, after eleven years by scans still are far from clear. Some of the newest lesions have faded almost to the point of not being there but the older ones I guess I am stuck with. However the brain is large enough to make many new pathways. The problem comes when someone has bad cord lesions because there , there is much less space.

Please do try to remember to report back in six months, even when you find again that there is nothing to report. The more people who do, the more evidence there is that this works but unfortunately many people don't: they just want to get on with the rest of their lives, which I can understand, but it makes it more difficult for people like me, who re then accused of being merely a fluke.

Sarah

[Anunymouse]

Will do

[SarahLonglands]

Merci!!

[Anunymouse]

Another post, not an update but a couple questions. I don't have anything new to update other than a random complaint that I sprained my thumb last night working on a house. It's totally unrelated but I'm in a complaining mood :laugh: On the upside, I'm typing on my computer instead of my tablet, so punctuation and capital I's!

I'm on I believe pulse 10, last day, so I'm run down as usual and feeling depressed a bit. Bear in mind that last bit if I have a tone here. I just want to to cry and that irritates me. I'm looking forward to a few days from now when I start rebounding. I passed my ER anniversary last month, and am a week away from my dx anniversary, as noted about 2 months away from my 1 year of antibiotics anniversary. I'm anticipating staying on this regimen until at least my next MRI/Nero appointment, and if things look good coming off. That will be about a year and a half of the antis, excluding the probably less than 5 pills I've missed. I'm tired, I'm tired of being tired, and everything I'm taking has fatigue as a side affect. I don't know if what I feel is the side affects, the ms, or what. I have a normal DR checkup in a week or so, I plan on asking him for prescriptions for what I've been taking. Up till now I've been ordering from overseas, I want to finish on pills that I know have quality control and see if there is a noticeable difference between the 2 in how I feel. My usual appt consists of labs for my thyroid and I think he's doing cholesterol this time since I'm supposed to fast. I asked him to add D, B, and calcium as well. I was severely deficient in the beginning of this and take an apparently stunning to my Neuro amount of D3 so I want to make sure I'm not going toxic on the D or trending towards hypercalcemia.

So in preparation of coming off them, I've read that towards the end of the protocol to take flagyl continuously. Does that actually mean every day towards the end or does it just mean continuously on the pulses? The thought of taking that every day for a month or more doesn't exactly thrill me. I don't like the way I feel at the end of the week. Between just feeling tired and feeling bad for 10 days a month, thats about the only consistency I'm dealing with. Now that I type that out, I wonder if I have male PMS :laugh:

2nd, should I ween myself off all the antibiotics or just quit entirely? I know that they aren't going to cause problems like someone coming off long term opiates etc, but I don't know if there will be a future efficacy loss if I just go cold on them.

3rd, assuming things haven't improved from the last scan. Can I take a break from the entire protocol without expecting a resurgence of symptoms or affecting how well the antibiotics work when I restart?

[SarahLonglands]

Glad to hear that you are still going strong!
The way I managed things was to take the antibiotics for just over a year then stop. I did do an intermittent protocol where I did a two week course every couple of months, for three years, but I don't really now if I needed to and neither does David, who only kept his on for a few months. He wanted me to do the full term though.

I haven't had a resurgence of symptoms since and I have taken a five day course of roxithromycin since because of an infected thumb, so I know the antibiotics are still effective if you need them for something else.

I still take a modicum of supplements and I certainly include NAC most days.

I love to be free of metronidazole because it always made me cry within twenty minutes!

Sarah

[Anunymouse]

Thanks. I had my regular dr visit a few days ago, we discussed the ms of course and the treatment I'm on. He asked for some background on the what and why and he finally said that I am above and beyond him, So keep doing what I'm doing. I asked for and he agreed to give me rx for all the antibiotics. He did say the pharmacy is "definitely going to call me for this" :laugh: But they filled and I'm on day 2 of fda approved drugs.

The rest of my bloodwork is as close to perfect as it can , thyroid is as close to normal as it's been in 5/6 years. Creatinine is a smidge high but I'm back on a creatine run so I was expecting that.

I'm going to have to dig out my broken ipad and hope it boots up. All my notes and starting dates are on it.

[SarahLonglands]

Well, I have heard a neuro say that just to one other person doing this, but unfortunately he didn't go as far as prescribing for her!

Best dig out your broken ipad!

Sarah

[MacKintosh]

Well, somehow I've missed this entire saga until today. Anunymouse, you and I had the same reaction to diagnosis. I refused to believe my body suddenly started chewing on itself and I researched until I fell asleep, got up and researched again, til I found a tiny blurb about antibiotics and MS, then an article about Dr. Wheldon and his wife Sarah Longlands. Infection made a LOT more sense to me than 'autoimmune' mumbo-jumbo (which essentially means "we don't know the cause").

I'll offer a confirmation on flagyl making you weepy. It made me weepy and short-tempered. As for taking it continuously, the aim of the original researchers was that we take flagyl continuously, but it was much too hard for beginners and they dropped out of the programme. As you eliminate your bacterial load, you should be able to better tolerate longer pulses of flagyl. The problem still remains that the flagyl affects one's mood. I did a couple of month-long pulses with flagyl and felt toxic and crummy at the end of each month, so you're not alone.

Congrats on finding a prescribing physician! Now, with your improvements, you may have taught the doctor a valuable lesson on MS and cpn and you'll have helped the doctor's future patients as well as yourself.

[Anunymouse]

Yesterday was another mri and followup appt, a little irritated with my neuro. Looking at my records i completed about 13 months total, 12 on flagyll. I stopped about a month ago, at the very least i want a break and some time not breaking into a painful rash every time i see the sun. Thank you doxy.

Anyway, mri report says there is a 6.5mm lesion in my brain, not contrasting so not active. I've never had a lesion in my brain before. Mri from years ago reported clean excluding dawsons, every scan in the last couple years also clean, reviewed by 3 neoros and the guys in charge of reading the scans before the neoro sees them.

So in the last 6 months an invisible one popped up and went dormant. I know, it can happen but that's not my irritation. She points to another area and says it's also an old one, and points it out on the previous scan. But it was never pointed out before by anyone. So retroactively I've been wrong. Or not. I don't know.

When i first started seeing her she pushed hard for tecfidera, until pml and death started happening. Then she flat out says don't use that but has been wanting me on aubagio. She says she won't use anything harsher because it's only for extremely active ms and mine is extremely not. But our first visit she told me I was about average for her patients. And that aubagio was very effective, but skimming the brochures their own testing only shows a 7% difference compared to placebo. How in the hell is 7% statistically significant?


I was hoping for a better appt yesterday. I'm very angry today in general. It's not making me happy.

[MacKintosh]

First, a question. Is there any chance they used a different MRI machine, or has something been enhanced since last time?

And, were your scans compared side by side?

Okay, now for the Pollyanna comments. You have no active lesions. You're not declining. So, why the glum response?

[Anunymouse]

Actually no. The imaging center has just upgraded to a new 3t (I think) machine, but they had me in the old one yesterday so it should be the same machine. My previous scans were done locally, the last 2 were in Colorado. I was hoping for the stronger one but it didn't happen. It just went from there's nothing, to a plaque that was never seen as active along with an old one that has been missed by every person every time until yesterday. I asked her if there was anything with the new one that was actually there last time and she told me no, because there were different views and nothing could be missed.

Except for the one that's been missed on every previous visit etc.

So she wants me on meds that are 'very effective', unless you read the literature the manufactures put out and see the single digits. But not the meds that are 'very effective' because they're too risky until I'm too far gone to do any good (stem cells, lemtrada etc).

I overall don't understand the reasoning that I keep coming across of waiting until you need a cane, to give you the meds that would keep you on 2 feet. Then waiting until you need a walker to give you the meds that might have kept you on 3. And then in a wheelchair before trying something that might have kept you on your feet in the first place, and since the efficacy rates of most of the drugs are in the single digits, why even put up with the guarantee of side effects in the first place. Especially when she tells you that lesions and disability don't have a causal relationship, but she wants to treat the lesions. Or don't and she'll do another scan in 6 months.

I'm aggressive with problem solving and always have been. Personally I say kill the problem today and don't have the 356 problems in the next year. Don't kick the can down the road, you just have to deal with it when you catch up to it. And all the meds just seem to kick the can, but they don't even do that.


The entire thing makes me angry as a whole and I know that's affecting how and what I write. It's messing up my zen.

99% of this is me venting and most of it is frustration being told that nothing could be missed, when apparently things have been missed by multiple dr's for years. Or not. Who knows? Once past stories start changing I begin doubting everything that I was told and there goes what little solid ground I thought I was standing on. I do my best to not vent around my wife or kids so it has been building up and I was hanging my hat so to speak on a better appt yesterday to relieve some of the pressure. Instead it got compounded, and here I am just as a whole, unhappy.

[MacKintosh]

Since I have a couple of "I'll never go back to THAT doctor" appointments in my past, I can empathize.
And, better to come here to vent than upset the family.

If you don't mind my asking, aside from the physician-frustration, how are you feeling?