The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Update, Marianne L.
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Update, Marianne L. |
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Marianne L. inactive member 
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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
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 |
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Dr Trevor Marshall Research Team 
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Have you tried to add a little pure Quercetin? |
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Marianne L. inactive member
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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 |
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Huey Member in Phase 2/3 
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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, Huey Last edited on Thu Sep 2nd, 2004 05:16 by Huey |
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Marianne L. inactive member
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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 07:23 by Marianne L. |
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Marianne L. inactive member
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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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Aussie Barb Research Team 
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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  |
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Reenie inactive member
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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. inactive member
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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 |
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Marianne L. inactive member
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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 |
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Aussie Barb Research Team
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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 |
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Marianne L. inactive member
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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 |
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Aussie Barb Research Team
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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.... |
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Marianne L. inactive member
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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
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 |
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Aussie Barb Research Team
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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 |
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Reenie inactive member
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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 in Phase 2/3 
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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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Kate D. inactive member 
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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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Marianne L. inactive member
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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 |
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Dr Trevor Marshall Research Team
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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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Michael inactive member
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I too would like to know the answer to Marianne's question... "But are you meant to feel better compared to your baseline before moving to Phase 2?" I think it is critical to making the decision to move on to the next phase. Thanks, Michael |
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Dr Trevor Marshall Research Team
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Michael, Most people that start phase 1 move forward to phase 2. Most have worked through the herx of phase 1 and realized that the description I have given them is what they experienced, and they trust that the same correlation will occur during phase 2, at least until they work down the bacterial load sufficiently to realize real, tangible gains at about months 6-9. But nobody is forcing you to implement the MP. If at any stage you feel that you have better treatment options you should take them. You can always come back in a year or so, when the MP has established its track record even more clearly. ..Trevor.. |
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Marianne L. inactive member
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Thanks Trevor, I’ve requested the Phase 2 questionnaire from admin and should get the new guidelines when I return it (if I’m deemed ready). I only have a copy of the ”old” Phase 2 guidelines which warn of a potential strong herx which could last for weeks and that’s what I based my decision to wait on. But I’ll have a look at the revised guidelines and see if I can proceed sooner without too much risk of ruining Christmas completely – mainly because I’d like to be able to be mentally present for my children (aged 3 and 7, there’s been so many things I’ve been unable to share with them since falling ill - just before the little one’s first birthday - so I try to participate in ”big” things). Anyway, must admit I’m keen to proceed even if it means more ”punishment”, the potential reward at the end compared with my present state of health makes it more than worthwhile for me to try. Michael – are you presently on the MP? It’s a long haul, but no longer than any other chronic Lyme treatment I’ve heard of (and I think it's much the same with other Th1 diseases, though admittedly I haven’t looked into them). Anyway, best of luck whatever you’re doing/decide to do! Marianne Last edited on Fri Dec 3rd, 2004 14:57 by Marianne L. |
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Paula Carnes Member in Phase 2/3 
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Michael, This is how I decided to move to Phase 2. I waited until I felt about the same while on 100 mg of minocycline every other day. I did not feel worse one day and better the next - just about as bad both days. LOL I am serious. I have not had much improvement until now about 2 months into phase 2. I hope this helps a bit. Paula Carnes |
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Michael inactive member
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Trevor, Hey go easy on me. I don't feel forced into the MP. I have been on it since May 1, 2004 and am in strict compliance (though not at first, which cost me 2 months). I don't understand why you didn't answer the question and chose to take a shot at me. I support your work, introduced 2 doctors to it and numerous patients. I hope you have confused me with someone else. Best, Michael |
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Michael inactive member
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Paula, Thanks, it helps knowing that you hadn't seen any improvement from your baseline until 2 months into Phase 2. I'm in this for the long haul but after 7 months on Phase 1, it's hard to resist trying to speed things up. Also, after 30 years of illness it is hard to recognize a baseline, no less a herx! Marianne, thanks for the encouragement. Best of luck to you too!! Michael |
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Dr Trevor Marshall Research Team
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Michael, I wasn't taking a shot at you, sorry if it read that way. I was merely stating the obvious, but often overlooked, fact that nobody is forcing anybody to go onto the MP, or to progress to health. We are providing a service here, to assist folks who have made that choice ..Trevor.. |
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Foundation Staff . 
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Michael, Paula's reply to Tobi about when to move on to phase two might be helpful to you: "Tobi, This is how I interpret when you are ready to move to phase 2. You are protecting yourself and especially your eyes from sun/lights. You are on 100 mg of minocycline every other day AND Your symptoms are pretty much the same during those two days. If your symptoms tend to vary up and down you should stay on the mino longer. But if you are stable (you may feel bad, but consistently bad) then you want to move to phase 2. The reason is that minocycline alone with the Benicar is NOT enough to get rid of the bacteria. You must add another antibiotic in phase 2. I hope this helps. Don't wait until you feel well to go to phase 2 because that will not happen on just Benicar and minocycline. YOu just want to feel stable. Paula Carnes I would just add that some people do feel better at the end of phase one and that before you go on to phase two, you should be ready to feel a little worse. Best, Meg |
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Marianne L. inactive member
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I’m now 68 hours into Phase 2. So far there’s been an increase in aches (shoulders, neck, arms, back) and very significant chills which remind me of when I started mino. Have also recently developed slightly sore/strained eyes in situations that didn’t bother me a month ago, like watching TV. Anyway, the reason for my update today is that I just had some control blood results back. My 25-D has dropped by a bit more than half since 14 June which concerned my GP (general practitioner) because it’s now below the reference range. He said that normally he would recommend strong supplementation but said I should check with people who know about the MP when I explained you actively strive to lower 25-D when on the protocol. He wanted to re-check 25-D in February. My doctor also said my blood count was a bit low and has ordered numerous additional tests for iron level etc. Here are some of the test results I got today – hope I picked the relevant ones, had an abundance done but all were within the lab’s normal range except 25-D and B-haemoglobin-conc. Blood was drawn on 7 December: B-haemoglobin-conc.: 6.9 nmol/l (range: 7.4-9.6) (14 June: 9.1) Creatinin;P: 79 µmol/l (range: 45-80) (14 June: 58) Vitamin D;P: 32 nmol/l (range: 45-150) (14 June: 66) Questions:
TIA Marianne Last edited on Wed Dec 15th, 2004 23:27 by Marianne L. |
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Reenie inactive member
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Hi Marianne, Your D is FINE. You'll want to lower it MORE. That will happen in time. As for the rest of your labs: Meg says, "Your lab results need to be considered with your medical condition in mind. Many of the sarcoidosis patients have learned of inflammation in the kidneys only when they started the Marshall Protocol. The increase in inflammation as the bacteria die, can cause a rise in BUN or creatinine indicating a temporary decrease in kidney function. These numbers improve when the kidney inflammation resolves. Unfortunately, this is the only way to resolve the subclinical kidney inflammation that would most certainly worsen without treatment. It is very common for the red blood count to be abnormal in Th1 inflammatory diseases. I, for example, am borderline anemic and have a monoclonal gammapathy of undertermined significance (MGUS). Regarding blood counts,Trevor has said, "It is best not to get fixated on any expectation of 'bad figures' and 'good figures'. If Doc gets too concerned about the numbers then, IMO, you should back off your antibiotic dose and take the therapy a bit slower." There is good reason to expect that abnormal blood counts will normalize as the inflammation resolves." http://www.marshallprotocol.com/view_topic.php?id=1281&forum_id=11 |
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Foundation Staff .
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Marianne, It is essential to evaluate the level of Vitamin 25-D (the inert percursor) in reference to the level of Hormone 1,25-D (the active metabolite). Avoiding all forms of ingested Vitamin D will decrease the amount of 25-D stored in fatty tissues. This is desirable because less 'fuel' will be available for inflamed tissues to use to produce excess 1,25-D. Since 25-D has no function but to enable 1,25-D to be produced, if you have enough 1,25-D, then you do not need any 25-D. Persons with Th1 inflammation produce excess 1,25-D directly within the kerotinocytes in the skin and the renin-angiotensin system of the eyes when exposed to sun/lights. No 25-D is necessary for this production. Fatty tissue stores of 25-D are nature's way of providing normal people the means to produce 1,25-D if they are unable to get any exposure to sun/lights. Normal people in northern climates sometimes need the 25-D fatty stores to get them through the winter when their exposure to sun/lights is less. They need an adequate supply of the precursor because they do not have inflammatory tissues that are producing excess 1,25-D independent of regulation by the kidneys. Supplementing with Vitamin D does not increase Hormone D to excess in normal people because, without the production of 1,25-D by inflammatory tissues, their kidneys are able to keep the level of Hormone D tightly regulated. A fatty tissue excess of 25-D, however, in persons with Th1 inflammation allows the inflammation to rage on even if there is no exposure to sun/lights. Persons with Th1 inflammation are 1,25-D producing 'factories' and can get along quite nicely without any 25-D. Trevor has said, "Mild 'anemia' is expected in the Th1 diseases, as inflammatory macrophages accrete ferritin. Supplementation usually doesn't correct the 'anemia' and it feeds the inflammation." Your lab tests are not unusual considering your disease process. There is no need for supplementation of either Vitamin D or iron. The anemia should resolve when the inflammation resolves. Best, Meg |
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Marianne L. inactive member
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Thanks so much for your replies, Reenie and Meg, it’s good to have thorough answers and explanations on hand for my GP. He’s not really familiar with the MP but is happy to help me monitor kidney and liver function etc. whilst on therapy. He obviously wants to make sure I’m alright but is open (I think, he was certainly receptive to the D-issue and respects my choice to pursue this therapy) to good explanations why certain things must/will happen. I just need to be able to provide those explanations. Thanks once again! Marianne |
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Marianne L. inactive member
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I’m now three days into my third phase 2 ten day cycle. For the first two cycles I stayed on the initial dose of abx – I didn’t want to risk spoiling the holidays – now I’ve moved up to level two. I’ve experienced ongoing strong chills, pounding – but not irregular, fast or slow – heart beat, very stiff/sore neck and shoulders and a general feeling of malaise and exhaustion (though I’ve also had some moments where I was surprised at how energetic I felt). On day 9 of the first cycle I experienced vomiting and severe IBS but I’m unsure if this wasn’t just a stomach bug rather than herx. Anyway, it made me hold on for two extra days before starting the second cycle. Otherwise not much to report. Onwards and hopefully soon upwards! Marianne |
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Reenie inactive member
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Marianne, Since herx begins to hit on the 3rd day and will hit again harder on the 5th day of your Z cycle, it sounds as though your strongest herx on this Z cycle hasn't hit yet. If you feel at day 3 it's already a little stronger than you want, you might try backing down on your mino dose from 100mg to 50mg, qod, since the M+Z work synergistically. Then, you could try taking your next Z dose w/50mg, qod if you thought this was more tolerable. If you do decide to lower your mino, stay at the Z dose you're currently on until you can ramp the mino back up to 100mg qod before increasing your Z dose. In addition, you may want to increase your Benicar dosing to q4h, if you're having a cardiac herx. |
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Marianne L. inactive member
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Thanks Reenie, I woke today with much dizziness when I turned my head, even lying down on my pillow. I haven’t mentioned it before as it’s not amongst my main disabling symptoms but dizziness when changing position of my head has been with me since I fell ill so I’m absolutely sure it doesn’t originate from Benicar (blood pressure lowering medicine) but is part of the disease itself. That it’s currently increased I take as a sign of herxing and as it’s now a bit more than I wish to tolerate, I’ll take your advice and reduce the mino temporarily. Thanks again, Marianne |
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Marianne L. inactive member
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Just a quick update on my bloodworks. I had some tests done in December which showed I had become slightly anemic and that my creatinine level had gone up quite a bit since starting the protocol in August (it was still just within normal range, though). My GP then ordered some further tests, incl. for iron deficiency. Meanwhile I showed him answers from this site re. my test results and why they were to be expected. I just discussed the results of the follow-up testing with him (done 4 January): He said the numbers were still slightly skewed but not alarmingly so. No further evidence of iron deficiency found. He’ll test again in February, though, just to keep an eye on things and make sure my body can keep up with treatment – if it shows signs of seriously struggling, I’ll slow down treatment temporarily to allow it to ”catch up” but so far things seem to have stabilized as predicted. Marianne Last edited on Thu Jan 20th, 2005 15:43 by Marianne L. |
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Foundation Staff .
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Marianne, Trevor has said, "Mild 'Anemia' is expected in the Th1 diseases, as inflammatory macrophages accrete ferritin. Supplementation usually doesn't correct the 'anemia' and it feeds the inflammation." The Herxheimer reaction can also cause temporary anemia. I have this documented in my medical record when my Hgb and Hematocrit were lower than their usual borderline low for just two weeks. Best, Meg |
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Marianne L. inactive member
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I’m 6 months into the MP and am on the 6th day of my 7th Phase 2 cycle. I remain on the second level of Z and have been on that dose for five cycles now. I still herx noticeably on B + M + Z (e.g. strong chills, night sweats, dizziness, occasional headaches, occasional shooting pains in foot soles, aches in shoulders, arms, neck and back, and fatigue). All the herxing makes it difficult to identify progress, still upon reflection I’ve come up with the following status:
Last edited on Thu Feb 17th, 2005 19:05 by Marianne L. |
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Aussie Barb Research Team
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Thanks for posting your observations Marianne. It is plain terrible what we have had to call *living*.. all the best for more improvement, Barb ... |
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Reenie inactive member
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Marianne, Thanks so much for sharing, and for posting your pic. It's nice to see who we all are, especially, since, many of us have been leading such isolated lives due to this dreadful disease. BTW, I noticed you say you're taking B+M+Z. To avoid any confusion, I believe you're referring to Benicar as the "B"? Since B is often referred to one of the abx in Phase 3, I wanted to be sure to clarify to anyone reading your posts. Thanks again for posting, and go get those highlights done. It'll be a real morale booster, I'm sure. |
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Marianne L. inactive member
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Thanks Barb and Reenie, Yes by "B" I do mean Benicar. Haven't moved beyond Z in Phase 2 so didn't think of it potentially meaning something else, sorry. Marianne |
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Marianne L. inactive member
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7 months update. Still on second level of Z after 3 months in phase 2, now on my 9th cycle. Am considering lowering Z (or M, which is better?) as herxing remains so bad at the end of each cycle I’ve had to prolong a couple of times beyond the 10 days. I continue to see slow improvement in my fine motor skills – especially in my right hand which is worst affected by ataxia (and unfortunately I’m right handed). It no longer requires ALL my concentration to control and drink from a glass with one hand only without spilling. And I can now hold on to and use a spoon more normally (like holding on more loosely and move it about with my hand and fingers as opposed to clutching on tightly and using my wrist and lower arm to generate any sort of controllable movement). I went to get highlights done – which I loved – and a perm – which I didn’t love. Suddenly I remembered with frightening clarity exactly why it was 17 years ago I last had a perm done! Nicholas (my 3½-year-old son): “Why have you got new hair?......Can’t you take it off?......I want that as well when I go to the hairdresser” (upon which I had to break it to him that as he’s sporting something approximating a crew cut, his hair is probably a little bit too short for a perm )Rebecca (my 8-year-old daughter): “Don’t you think it’s ugly?” (well, er, yes, no need to put it quite so harshly, but as we say in Denmark, it’s from children and drunk people you learn the truth). Anyway, luckily the perm has now calmed down and provides the desired “body” to my hair (rather than the initial masses of small curls which just don’t suit me). My hair has otherwise, since I fell ill, looked like something stuck onto my head with a helmet of cling film. So at least it’s better than it was. Sorry, I’m rambling….. Marianne |
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Aussie Barb Research Team
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Hi Marianne, Thank you for posting.. all reporting is so helpful to others.. and it is so good to see you have yet more improvements!!! re decrease..? There is a post by Huey HERE... (in phase 2 forum) that you may like to look at ... I thought you may also find it helpful.. ask more if you need to.. all best, Barb ... |
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Reenie inactive member
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Hi Marianne, Dr M has said it may take a year or more to get up to the full dose of Z, so NO worries. As for which abx is best to lower, they work synergistically, meaning that the two abx combined worked "better" than either one alone, so, with that in mind, lowering either one of them will have more effect on your herx than you'd probably figure it would. Since the mino doesn't stay in your system as long as the Z, you could experiment with a lower mino dose easier than the Z, but if you think the Z herx is becoming intolerable, I'd lower Z. As long as you're herxing, the combo is working, so either way is fine. |
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Marianne L. inactive member
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9 months on MP, just over 5 months on Phase 2, 40 mg Benicar q6h, 100 mg mino q48h, 4th level of zithromax every ten days. It’s been two months since my last update so I think it’s about time I did one: Since I last wrote, improvement has continued to be really slow but it has been there all the same. For a few weeks progress (and herxing) stood completely still which was disheartening even though I KNEW I had too much light exposure for a short while (I’ve been given a three-wheeled scooter by the local authority and had to prove I used it – it has a timer – in order to be allowed to keep it. As it is my only means of leaving the house independently and I don’t expect to get out of my wheelchair for a few years – if ever – I decided to do my bit to meet the requirements for minimum usage, i.e. drive, drive, drive, even in daylight, to get the timer up……good news is I won’t have that problem again as I’ve now gotten the local authority to acknowledge my situation so they’ll leave me alone to only use the scooter as much – or little – as I require in future). Anyway, my herx symptoms have been: Chills, night sweats, headaches, muscle ache, fatigue, infrequent shooting pains, infrequently increased ataxia, various itches on feet, chest and back. Improvements since my last update:
Marianne |
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jolbell69 Health Professional 
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Dear Marianne, This is wonderful news!! I am so pleased that you are seeing some improvement, and hope it continues for you. I read your progress reports wiyh interest. Jo.x |
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Marianne L. inactive member
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Thanks so much, Jo. I hope you're getting on ok with mino this time and look forward to reading your next progress report! Marianne x |
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Marianne L. inactive member
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Nearly 11 months on the MP. No significant new progress to report this time, though I’ve noticed increased confidence in my fine motor skills so I’ll now most commonly pick up a glass with one hand without thinking much about it, even if we have company. Also, for example, we play a dice game when the whole family is gathered, and I’m now able to separate the dice I need with my right hand again, before the MP my hand was much too unsteady to do that. Otherwise I’ve spent my time on herxing, family birthdays, one outdoor excursion (the rain belted down all day) and the first family holiday in three years – to Scotland. Unavoidably I got more light exposure than normally but decided to pay the price of probable temporary setback/lack of progress as this is no quick fix and I want to be there even if it’s in a much limited way for my children while they’re young and really need me/appreciate doing at least some very occasional things out of the house as a family. Immediately after the holiday (July 5) I switched from Z to C, not because I felt Z wasn’t working but because I want to go as much after my brain symptoms (ataxia, dysarthria, nystagmus – all apparently controlled by the cerebellum) as possible. For some reason, which right now is totally beyond me, I thought I’d be able to ramp up C pretty quickly but within hours of my first dose I experienced increased ataxia, a very sore and stiff neck, sore muscles in my right leg, shaking in my left leg, a headache and pronounced irritability (my poor kids!). So now I expect to take it easy, might even lower mino if necessary. Will report back once I’ve taken C and totally cave-dwelled again for a while. Marianne |
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Dr Trevor Marshall Research Team
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Marianne, M+C is a potent combo. When you get to Phase 3 you will find M+Z+C even stronger Good to hear of progress in the motor skills. It is those 'little things' that creep up on you... |
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Aussie Barb Research Team
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Marianne thank you for posting.. it is excellent to see you making progress.. There is info re the effects and ramping the phase 2 abx in the phase 2 forum.. I have sent you a pm.. Barb ... |
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jolbell69 Health Professional
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Dear Marianne, I am so pleased you are seeing some inprovement - no matter how small!! May it continue!! Jo.xx |
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Marianne L. inactive member
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One year on the MP today. 40 mg Beni q6h, 100 mg Mino q48h, 3rd level of Clindy q48h. So has my life changed dramatically for the better? No, not yet, not dramatically, but I did start from a VERY low point so there’s a lot of fixing to be done. And I continue to discover small but definite improvement so I’m happy to continue. Herx signs since I last wrote have been the usual chills, sore breasts, increased nystagmus, tingles/numbness in fingers, sore wrist, oedema in feet, nausea, headaches. The chills have been with me nearly every day, the other symptoms have come and gone, nothing has been intolerable. New improvements (or rather things I’ve noticed in the past month, I’m sure it’s been a gradual process):
So, onwards and upwards! Marianne |
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Marianne L. inactive member
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14 months on the MP, 40 mg Ben q6h, 100 mg Mino q48h, full tablet of C q48h. Time for an update. My husband asked how often I needed to write on this board, and I replied I don’t really need to, I just do an update approx. every 2 months and would otherwise only write if I had a problem or something specific to say. “But you do have something to say!”, was his reaction. He then pointed out how for months I have been able to look back – at any given point - one year and say I’m better now than I was then. So he has no doubt there is continual progress. Other positive reactions recently have included two friends commenting how much more steady my hands were, one saying how much healthier I looked and my hairdresser commenting that I speak much better (faster/more clearly). Such positive indications mean the world in moments of doubt and depression. I’m aware that I so desperately want this to work that it’s difficult to look at how the protocol affects me objectively myself, and so it’s nice to get indications from people around me that I am doing the right thing and not just imagining progress. So healing might be painfully slow, but it’s still there and I’ll keep plodding along. Will probably re-introduce Z within the next month or so. Marianne |
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Marianne L. inactive member
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16 months on the MP. After a period of Mod Phase 2, I reintroduced the first level of Phase 2 three days ago so am now on three antibiotics. I feel nauseous, headachy and depressed. Can’t help but wonder if things will EVER get significantly better for me., i.e if there are life-changing improvements that will come if I'm just patient enough. Ongoing/repeating herx symptoms since I last wrote have been strong chills, night sweats, numbness in fingers when resting, sore muscles, sore wrist. Since my latest MRI scan (September 2003) showed my cerebellum had shrunk, I’m considering combining the MP (and the fight against chronic infection) with stem cell treatment (from umbilical cords of newborn babies - against permanently damaged cells that can’t regenerate). Any views on or experiences with this? Before I decide, I want a new MRI scan to see if there are still signs of permanent damage to my brain. My GP – a lovely man whose decision it unfortunately is not – thinks I have about a snowball’s chance in Hell of getting an MRI done by the Danish state - I might be desparately ill but I'm stable in my misery and not about to die (physically) - so I expect I would have to go private. No matter what I've no doubt I want to cotinue with the MP because I truly believe infection is the underlying cause of my problems - am just not sure that targetting infection alone will deal with all the damage it's caused. Marianne |
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Dr Trevor Marshall Research Team
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Marianne, Why do you feel that the MRI scan is a good predictor of permanent brain damage? There is no evidence that it is a good predictor of anything, really. Reading NMR data is still a qualitative exercise. Newer markers and SPECT have improved things a bit, but this machine is no more reliable than any of the myriad of machines which have failed to discern the correct state of our immune disease. I have seen no signs of permanent brain damage. I have seen the body heal itself to a degree beyond comprehension. I have seen MsDale get out of the wheelchair and become a whirlwind of mental energy. I have seen Lowelle back on her horse, riding in competitions. I have seen many others with less obvious, but equally impressive, healing transformations. Just try and keep up with Meg and Belinda through a normal working day, and you will see what I mean When I was 30, a CT scan of my head showed that I had a fluid space as large as a 70 year old man. I was told I only had 18 months to live. And now here I am leaving the scientific world behind in a shower of sparks. Personally, I don't believe that the Th1 pathogens cause any damage from which the body cannot recover. I suspect even fibrosis will eventually remodel. I hope this helps, and that you, and yours, can relax and enjoy the holiday season. Sincerely Trevor ps: infected stem cells are the last thing you want to introduce to a healing body... 60% of 'healthy' folks are carrying around CWD (see the Brown, at al, ACCESS study) http://www.chestjournal.org/cgi/eletters/123/2/413 |
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Aussie Barb Research Team
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Marianne re " I feel nauseous, headachy and depressed. Can’t help but wonder if things will EVER get significantly better for me.," We would like to assist you in any way we can re handling the herx to a tolerable level .. Posting an Index of your schedule and dosing at the top of your post is helpful to Staff for replying and for other Members for reading and understanding .. You may like to look how some are doing it.. eg Day ... Mino dose.. schedule QOD or Q72H eg / Benicar dose.. Q...H thank you... see also the Information posts at the top of the Forum.. PHASE THREE eg.. also: Reduced Benicar dosing You may wish to discuss with your Dr the new info re Benicar from Dr Marshall's most recent paper which should be posted in the next couple of months - you and your Dr may be interested in trialing a reduced dose of Benicar (but no less than 20mg every 6 hours) ... If it is better you may stay at that dosing, and if it isnt, it is easy to revert to the full dose again.. Let us know if you have any questions.. thanks Marianne, Barb ... |
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Marianne L. inactive member
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Dr Trevor Marshall wrote: Marianne, Dear Trevor, Thanks for your comforting response. To answer your question, I feel that way because neurologists have told me so! But you questioning it makes me think why I should trust that piece of infomation when neurologist (and I've seen a few!) have not been able to help me in any way, let alone diagnose me. Dear Barb, Thanks for your response also. I do not feel herx is intolerable, I just get sick and tired of being so handicapped every now and then. I've no idea what day I'm on with the MP (hence the month thing) but otherwise my current schedule is Ben 40mg q6h, Mino 100 mg q48h, a full tablet of C q48h, and the first level of Z every ten days (only taken once so far). I'm much interested in trialing the reduced dose Benicar and will keep an eye out for more information, thank you! TO BOTH OF YOU AND ALL MP STAFF: Merry Christmas and Happy New Year to you and yours, I truly appreciate all you're doing for us patients! Marianne xx |
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Marianne L. inactive member
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Ben 40mg q6h, M 100 mg. q48h, full tablet of C q48h, full tablet of Z every ten days (sorry, no idea what cycle I’m at in total, but today is my first day on a full dose of Z). Sorry about not writing for so long. I’ve been partly preoccupied with despair of my situation (wallowing in self pity!) and partly waiting for something significant to report – but I haven’t noticed anything. That’s not to say it hasn’t happened, but I just haven’t noticed. Anyway, since I last wrote I’ve reintroduced Z, built it up, and am now on my very first day of a full tablet of Z. When I feel stable at this level, I plan to swap C for B. Herxing whilst building up Z has been as strong as I’m prepared to tolerate, incl. lightheadedness, a general feeling of “unwell”, head aches, muscle pains, strong chills and night sweats. And then my periods (sorry guys!) have become highly irregular. I realize that to many ladies this won’t be a big deal, but mine have always been so regular I could almost set a clock by them. I knew exactly what to expect and when to expect it. Except for the ten months leading up to my illness. I remember being greatly puzzled by that (but luckily I had absolutely no idea what was awaiting!). Well, now something similar is happening. I take it as a sign that SOMETHING is happening in my body. Sure hope it’s good, I could SO do with that. Marianne |
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Aussie Barb Research Team
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Thank you Marianne Information is continuously being added to the detailed Information Posts at the top of the Phase 2/3 forum and in the forums. You may find LST encouraging here too. Lonestartick: Late stage Borrelia with co-infections Success Let us know if you have any questions. all best, Barb .... |
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Marianne L. inactive member
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Thank you Barb, Yes LST's posts are encouraging!!! I'll keep in mind the required end dose of ph 2 abx when I move on to B. I planned to lower the other antibiotics at first anyway. Thanks again, Marianne |
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