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Marianne L.
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Posted: Wed Sep 1st, 2004 07:39 |
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16-23 August – Benicar only, as reported in separate section. Update, Marianne L.
24-31 August
40 mg Benicar every six hours, 25mg Minocycline every 48 hours
BP average 80s/50s, has been high 70s/high 40s – don’t FEEL it being lower than normal (pre-Beicar it used to average 100s/70s, I think), but monitor regularly to keep an eye on it.
Pulse – lowest 73, highest 103, normally 80s
Have felt a tolerable but nonetheless definite and consistent reaction to mino, including
- Pronounced chills and shivers – as soon as ½-1 hour after taking mino
- Fatigue, feeling of physical weakness
- “Brain fog”/flu-like feeling
- Aches in whole body
- Slight headache
- Slight nausea
- “Shooting pains” in foot soles, hands, arms, fingers
- Upset stomach
- Irritability
I don’t have all the symptoms at the same time, only a degree of chills and fatigue seems to be with me all the time. Both seemed to get worse over the week but are now better again. Will stay on present dose of mino for a few more days, though, to make sure the worst reaction has died down.
All in all: No improvement yet, but a much more clear and consistent reaction to mino than I’ve ever had to high-dose antibiotics in the past. So I’m hopeful that the right things are happening.
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Dr Trevor Marshall
Research Team
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Posted: Wed Sep 1st, 2004 12:06 |
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Have you tried to add a little pure Quercetin?
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Marianne L.
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Posted: Wed Sep 1st, 2004 18:45 |
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Not yet, as unfortunately my order from the States seems to be stuck somewhere mid-Atlantic. But I plan to try some as soon as I get my hands on it. Not because I'm suffering that much (in fact I've found my reaction to mino a bit reassuring - noticable, yet tolerable) but still I'm interested in seeing what Quercetin might do.
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Huey
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Posted: Thu Sep 2nd, 2004 02:11 |
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Marianne L. wrote: All in all: No improvement yet, but a much more clear and consistent reaction to mino than I’ve ever had to high-dose abx in the past. So I’m hopeful that the right things are happening.
Except for the shooting pains, your herx a 25mg mino is very similar to what I experienced at the same dose. I recently upped to 50mg, and find the herx is somewhat milder than what I had at 25mg. Sitting out a strong herx is tough, but sounds like you are on the right track.
If I might ask, what method did your doc use to give you the diagnosis of cerebellitus...such as a scan or test of some sort, or based on symptoms?
Thanks, HueyLast edited on Thu Sep 2nd, 2004 02:16 by Huey
____________________
Huey
1990--sudden onset CFS
Jul 04, d test 25d-29 1,25d-34
Aug 6,04--Started phase 1
Nov 16,04--Started phase 2
Sep 28,05--Started phase 3
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Marianne L.
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Posted: Thu Sep 2nd, 2004 04:22 |
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Hi Huey,
I think the cerebllitis diagnosis was actually a process of elimination - an MRI scan at the time showed nothing, nor did any blood tests, but at first when I fell ill I had elevated white blood cells in my spinal fluid indicating inflammation and my symptoms pointed to the cerebellum - so "cerebellitis" - without finding out what actually caused it - is what my doctors came up with.
I now think it was borrelia attacking the cerebellum (or triggering a virus that did - perhaps both?), so I see borreliosis (Lyme) as the underlying cause. I just hope too much damage isn't permanent - a routine MRI about a year after my first ones - 3 in total, all showed nothing - revealed that a degree of shrinkage of the cerebellum had subsequently occured. Not good. So I guess realistically I should be prepared for some level of damage, though I'm certain at least some of my symptoms are reversible with the right treatment. I hope it's as many as possible, of course.
Marianne
Last edited on Thu Sep 2nd, 2004 04:23 by Marianne L.
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Marianne L.
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Posted: Fri Sep 10th, 2004 09:25 |
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1-8 September
40 mg Benicar every six hours, 25 mg Minocycline every 48 hours.
Nothing new to report on blood pressure and pulse. BP still quite low, and pulse a bit high, I think (what should a normal pulse be?) but nothing that bothers me.
Continued on 25 mg of mino with less and less reaction.
Got my NoIR sunglasses on Saturday 4 September, and yes TedS I’m with you, I really, really don’t like wearing them. I actually feel more fatigued when I wear them, possibly because I then block out natural light and feel uncomfortable – physically I mean – too. I never liked wearing sunglasses. However, I shall persevere. No point in doing this if it’s not done properly.
On Monday 6 September my Quercetin finally arrived. As I was feeling fatigued and a bit nauseous, I decided to try it out and took a capsule at noon and another at 6pm, where I also take Benicar and have a meal. Both times I felt the Quercetin helped. Not revolutionarily so, but it definitely took the edge of things and I felt much less fatigued and without nausea for about 5 hours each time.
9-10 September
40 mg Benicar every six hours, 50 mg Minocycline every 48 hours.
Yesterday (9 September) I upped my mino dose to 50 mg. The reaction was unmistakable though it took a bit longer to hit me than at 25 mg; first significant chills and shivers, then sweats, then nausea and vomiting (once), and of course fatigue. At dinner time I managed to get some Quercetin down me and again it took the edge of things. Today I feel better but took Quercetin from the morning.
I think that’s how I’m going to do it: Find out first if and how much I react to a dose of mino, then if necessary take Quercetin for relief, and if that doesn’t work, lower the dose of mino. Is that the correct way to go?
Marianne
P.S. Admin – feel free to move this to the Quercetin thread if you think I should now post there. I wasn’t sure because my use of Quercetin is still fairly experimental, not an integral part of the protocol for me (yet, anyway).
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DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Aussie Barb
Research Team
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Posted: Fri Sep 10th, 2004 18:58 |
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I think that’s how I’m going to do it: Find out first if and how much I react to a dose of mino, then if necessary take Quercetin for relief, and if that doesn’t work, lower the dose of mino. Is that the correct way to go?
Marianne
Hi Marianne, you can do it that way or perhaps you may like to take it up by half again, instead of the doubling? that way there is less risk of it being *too big*, too sick. ???
that vomiting doesn't sound like much fun to me 
whew... you've done a big job  Best wishes, Barb 
The MP Blessing
To us Each & All:
May your herxes be big enough;
for you to be making good progress;
and not too big;
that you may still be able to rise to the challenge!!!
Barb 
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Reenie
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Posted: Fri Sep 10th, 2004 19:30 |
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Marianne L. says, "Yesterday (9 September) I upped my mino dose to 50 mg. The reaction was unmistakable though it took a bit longer to hit me than at 25 mg; first significant chills and shivers, then sweats, then nausea and vomiting (once), and of course fatigue."
ML,
Is this reaction tolerable? If not, here's what Dr M says about ramping up, (the discussion was smaller dose ramping) so I would tend to agree with Barb, in that if 25mg is not enough of a herx, and 50mg is intolerable, then maybe try 37.5mg.
"Obviously - you stop incrementing immediately the herx becomes significantly worse, and back off to the previous level."
http://www.marshallprotocol.com/forum20/450-3.html
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Marianne L.
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Posted: Fri Sep 10th, 2004 19:44 |
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Thanks Barb and Reenie, no the vomiting isn't much fun at all but apart from that one episode I think the herx was tolerable. Also, I guess I'm a little bit immune to it as I was more or less continually nauseous for more than a month before I finally gave up on doxy (drove around in my wheelchair with a plastic bowl in my lap just in case - some diet that was ).
Anyway, will see how I feel tomorrow before I decide whether to lower the dose of mino (or alternatively wait another day or so before I take more) - dividing the capsules is actully the biggest hindrance as I don't have the fine motor skills to do it myself - too ataxic. And I swear my husband (bless him!) has, like, five thumbs on each hand. Getting doses of 25 mg was excruciating to watch at first. I can only imagine what it will be like if he's to get 3/4 out of a 50 mg capsule  . Well that might be the way I have to go, but somehow I hope not.....
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Marianne L.
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Posted: Fri Sep 10th, 2004 20:06 |
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Forgot to add that I've previously been on 400 mg doxy per day, then 1500 mg metronidazole and 6000 mg amoxycillin (six thousand), also per day, so 25 mg (or 50 mg for that matter) of mino every second day seems like nothing to me. Which makes it even more amazing to me that such a small dose can trigger response at all. Guess I need to stay aware that this is a different ball game indeed and that I should be careful.
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Aussie Barb
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Posted: Fri Sep 10th, 2004 20:48 |
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M says: I need to stay aware that this is a different ball game indeed and that I should be careful
Barb Thoughts shared for all.....
it is difficult for Me also and I think for many of us, to comprehend the power of such a seemingly miniscule dose of ABx.... it is mere nothingness to look at!!! but whew!!
the difference being in the using of the Benicar... in it's potentiating the dose beyond our heretofore comprehension...
and Marianne, I am hearing you re the dividing thing be well soon, Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Marianne L.
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Posted: Fri Oct 1st, 2004 18:11 |
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12 September-1 October
It’s about time I did an update, I guess. I’ve now been on the MP for 45 days.
Last time I wrote I had just moved up to 50mg mino. I did struggle a bit with a slightly stronger – and longer-lasting - reaction than I was used to and as it was really bad with aches in my back, shoulders and neck and a flu-like feeling when my next dose of mino was due, I decided to wait one more day and back off to 25mg mino again to play it safe.
I did and didn’t feel much, so after another two days I tried 50mg again. This time the transition went more smoothly, still with a reaction – which I used Quercetin to take the edge off when needed - but more on the level I had with 25mg mino at first. I did have more chills and cold hands and feet at first and a new symptom was a few days with occasional bladder pain.
Anyway the reaction eventually died down and now I’m on my fourth day of 75mg mino q48h. So far the days where I actually take the mino are ok, but on the alternate days Huey’s wonderful phrase ‘yucky feel like cr*p’ is unfortunately somewhat appropriate. I have chills, a headache, aches in back, shoulders and neck, nausea, fatigue and moderate intermittent pains in foot soles and toes. The reaction is tolerable for my present activity level (I’m basically so disabled nobody expects anything at all and I can rest more or less all day if I need to), still I have a feeling I’ll be staying on 75mg mino for quite a while longer.
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Aussie Barb
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Posted: Wed Oct 27th, 2004 22:15 |
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Hi Marianne
How are you??
How are things?
You may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other new documents as well.
Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy...
Thank You Marianne, Barb....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Marianne L.
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Posted: Thu Oct 28th, 2004 07:28 |
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Thanks, Barb
Here's my update:
1-28 October
I’m still reacting to 75mg mino q48h so I’m sticking to that and am actually contemplating backing off a bit at the moment rather than upping the dose. Still take Quercetin for symptom relief when it gets too bad. Feel ok on the days I take the mino but quite horrible on the alternate days. My reaction includes
- Chills
- Icy cold feet, calves and hands
- Night sweats
- “Burning” sensation on “hot spots” on right leg – mostly at night
- Fatigue
- Aches in back, arms, shoulders, neck
- Increased dizziness at times
- Light headache
- Light nausea
My left wrist is also very sore at the moment but though this has happened before unprovoked (after I fell ill) I’m not sure that I didn’t just strain it this time – I put weight on it every time I transfer from my wheelchair (to toilet, shower chair, bed etc.) so can’t rest it as much as I would like for it to recover.
Still wear my NoIRs and still don’t like it but am at least getting so used to it I don’t feel them bothering my nose and ears all the time anymore
Have already skimmed the revised MP-instructions (will read them properly in case there are any adjustments relevant to me that I missed first time round) and go to this board for news daily.
All in all, still no improvement but a noticeable reaction to mino. My Lyme doctor has said on numerous occasions that in her experience a bad (non-allergic) reaction to treatment is a sign that the patient will get better eventually. So I remain hopeful though admittedly even slight improvement NOW would boost my mood no end. Oh patience!
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Aussie Barb
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Posted: Thu Oct 28th, 2004 07:45 |
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WoW Fantastic story! Thanks for posting nice to see you again Marianne...
Yes this is trying and takes time.... from the inside it can seem interminable, but from the outside, your story is Great!
IMO MP is about *management* and you are doing a great job.
feel free to drop the mino dose to see if you can herx a little more comfortably... & hold it for a week to see.. & ramp up again... or have an extra day off between mino doses to catch your breath if you want to.. These things will make life a bit less of a drag for you and are acceptable.
Keep us posted.. thanks..
Best Wishes Marianne, Barb
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Reenie
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Posted: Thu Oct 28th, 2004 17:06 |
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Marianne L. says, "All in all, still no improvement but a noticeable reaction to mino. My Lyme doctor has said on numerous occasions that in her experience a bad (non-allergic) reaction to treatment is a sign that the patient will get better eventually. So I remain hopeful though admittedly even slight improvement NOW would boost my mood no end. Oh patience!"
It sounds like your LLMD understands herx!
When I read your comment, it reminded me of how I feel and what I try to do, w/my mino dosing.
As my herx wanes, I try to give myself one more subsequent dose before ramping up to the next level. What this does for me, is I FEEL BETTER for a couple of days, before increasing my next dose, because I either have a really mild herx, or no herx at all.
IMO, if you follow this ramping, you would feel slight improvement as you work your way thru the MP.
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Big John
Member
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Posted: Fri Oct 29th, 2004 02:59 |
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| Excellent point Reenie! there are times when I loose track of the fact that we need a break sometimes.. It makes good sense (to me) therapeutically to stay at a dose once herxs become slight just to take a breather and maybe some time just to regain our emotional stability, remember this whole protocol is about comfort to the individual, I think sometimes we loose track of that and want to get to the next level and get better and in the process we punish our selves needlessly.
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Kate D.
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Posted: Sat Oct 30th, 2004 01:54 |
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Marianne, it is reassuring for me to see that your reactions to mino seem much the same as mine. I have been having a hard time with the coldness and sweats.
- Kate D.
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Lyme diag. 2004, IBS diag. 1997, ill since 1996, some symptoms 30+ years. MP since July 2004, Phase 2 since Jan 2005. Benicar 40 mg q6h. Ultram for pain, probiotics. Starting D values: 1,25 D = 46, 25 D = 11.
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Marianne L.
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Posted: Thu Dec 2nd, 2004 08:41 |
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28 October-2 December
Yippee – finally made it to 100mg mino every 48 hours! It’ll be my third dose today. I was on 75mg for nearly two months and my reaction didn’t seem to decrease any. I tried to take Quercetin 3 times a day for a while but didn’t get much relief on this occasion. I also tried cutting Benicar down to q8h to see if that and an eight hour stretch of sleep would at least make my fatigue lessen. It didn’t and just made me feel worse in other areas (a general feeling of “yuckiness”). So after a few days I went back to 40mg q6h.
In the end I decided I needed a break from mino. I could see that I wasn’t going to get to Phase 2 well before Christmas anyway as intended and as I don’t want to spoil the holidays and all the thing going on in December with too much herxing, the plan now is to wait until January no matter what. So I took a short break (4 days) and that did the trick! Started back on 50mg, didn’t really feel much, then 75mg, same story, and now 100mg mino q48h, so far with less herxing than on 75mg.
Can still, unfortunately, report no improvement compared to my pre-MP state of health so I try to console myself that at least I seem to be progressing through the protocol again after a couple of months of stand-still. But are you meant to feel better compared to your baseline before moving to Phase 2? Also, any new thoughts on whether/how glutathione interacts with the meds on the protocol? Is it still recommended against?
TIA.
Marianne
____________________
DX: Cerebellitis, Borreliosis (Lyme)
MAIN SX: Ataxia, dysarthria, nystagmus
June 04: 25-D=26.4; 1,25-D=40 (frozen?)
MP: 16-Aug-04
Phase 2: 12-Dec-04
Phase 3 (3 abx): 15-Dec-05
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Dr Trevor Marshall
Research Team
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Posted: Thu Dec 2nd, 2004 11:41 |
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Marianne,
I have no experience with glutathione. Those of us who have returned to health have not needed it, and, except for discussions with Rich VanK, the subject hasn't come up.
Great to hear that you have gotten to stage 2. The combination of Z+M gets at a lot more species than M alone. IMO, there really is no need to delay until January, however, because you could always start at a lower dose of the Z if you are worried about the herx getting in the way of your Christmas fun.
Sincerely
Trevor
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