Marie's abx log

Tell us what you are using to treat your MS-- and how you are doing.

Marie's abx log

Postby mrhodes40 » Fri Sep 02, 2005 5:44 pm

I am opening this thread to start my antibiotic log.
Today, Sept 2 '05 I was prescribed the first of my abx doxycycline. My doctor tested my 1,25 dihydroxyvitamin d and it is 52. Too high for 1,25.
This is a complex issue because the 1,25 does not reflect necessarily the 25-D status. I do not need any more D so will be cutting back on my d supplementation and getting a dexa to check my bone mass since high d will pull calcium out of bones. I am also asking for a 25-d test.

We will add more to the regimen after a couple of weeks on this. She is going to call Dr Wheldon and speak to him directly as she is more used to the Marshall protocol.

As of right now I am an edss 5.5 self score. Without a cane I can walk about 100 yards ( in a wobbly way), the length of a football field. After that I need to get my cane or rest if I need to go on. The thing that limits me is picking up my right foot. It gets "drop foot" that cannot be compensated for at that time, so I trip unless I go very slowly. My big toe is also unable to lift up.

Putting on my right shoe is like putting a shoe on a paralyzed person: the foot is limp and unmoving as you try to manipulate the shoe on. My foot can't point or move to slip into a shoe sitting on the floor. I must sit and grab my leg at the ankle and pick my right leg up with my hand, then holding the foot manipulate the shoe on with the other hand.
I also cannot hop on the right leg, though I can plantar flex my foot and raise up about halfway onto my toes on that side with all my wieght on that leg.

I can go on the schwinn elipse at the gym for 20 minutes at level 3. At that time I have difficulty walking when I get off. I stagger from one machine to the next hanging on to get to the bench and sit down until I recover enough to walk to the showers. The problem with walking at this point is that dropsy foot again. after this amount of working out I cannot pick up that leg enough to clear the ground without a wide swing on that leg, necessitating a severe lean to the left to clear that leg a very altered wierd "compensating" gait. If i stand in one place hanging on, that leg will pick up only to barely clear the ground. It cannot go as high as 2 inches at that point

I also have "violent stretching episodes" when I get up from sitting or out of bed . I have restless legs at night and take requip, 5 mg, for it.

My right hand is mildly affected. I can cut two chix breasts but then have to stop and do the veggies later for the stir fry. My hand is clumsy with normal sized forks and spoons sometimes, having trouble hanging on.

I am impacted by heat functioning less well in the warmth.
During acupuncture or massage I get spasms in my legs that kick the therapist.
I fall about once every two months, and my footing is uncertain. I feel unsteady and off balance especially going down ramps. The tiniest raised area in the walking surface will trip me. People near me have the desire to stand close "just in case", and my husband and son have gotten good at shooting out a stabilizing hand. Even strangers often kindly say things like "are you OK?" "Can I get the door for you?" "Here let me help" showing how obvious my issues are.

I use a wheel chair in airports. I avoid the mall because I have not for a year been able to do more than one department of one store...and that parking close to that department's door. I use a disablity parking pass always or get someone to drop me at the door.

I hope that abx treatment means one year from now I can walk with a more normal gait. I hope my right leg picks up and tracks straight forward without compensating. And I hope my arthritis, my asthma and sciatica are better.
That's my opening regimen entry
Blessings
Marie
Last edited by mrhodes40 on Tue Oct 11, 2005 10:28 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Katman » Sat Sep 03, 2005 10:06 am

Dear Marie

We will all be pulling for you. Knowing how I have improved makes me an avid viewer of your progress to come. Last week you posted the article about Vit. D which was interesting and helpful. I have niot yet done it but will. Thank you.

Your symptoms are so like mine. I don't have many you enumerated any more or they are "better". I know you wish for more concrete definations of "better" but ...... Maybe you will have them in 8 or 10 months.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Anecdote » Sat Sep 03, 2005 11:37 am

Marie, Your GP had better email David rather than phone him, otherwise she is going to have to be a very early riser.

I find it strange that doses of up to 4000 iu are recommended nearly everywhere for MS except by Mr. Marshall, where everyone who is tested under the Marshall Protocol comes out as having way too much.

Out of all the supplements, the only two I have taken absolutely religiously every single day for the last two years are 4000 iu of Vit D and 5000 mcg of B12. I had the most colossal fall when I turned too suddenly into the front garden last week, after having overdone it in the park in the hottest part of the day, but all I ended up with were a few colourful bruises. For someone who isn't exactly well padded, You might have thought I would have broken something if the Vit D is sucking all the calcium out of my bones. :?

Good luck, though. :)

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Anecdote » Sat Sep 03, 2005 12:18 pm

Here is a citation from pub med. I have more if you are interested.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9316607&dopt=Citation
Department of Biochemistry, University of Wisconsin-Madison 53706, USA.
Recently, it has been clearly demonstrated that exogenous 1,25-dihydroxyvitamin D3, the hormonal form of vitamin D3, can completely prevent experimental autoimmune encephalomyelitis (EAE), a widely accepted mouse model of human multiple sclerosis (MS). This finding has focused attention on the possible relationship of this disease to vitamin D. Although genetic traits certainly contribute to MS susceptibility, an environmental factor is also clearly involved. It is our hypothesis that one crucial environmental factor is the degree of sunlight exposure catalyzing the production of vitamin D3 in skin, and, further, that the hormonal form of vitamin D3 is a selective immune system regulator inhibiting this autoimmune disease. Thus, under low-sunlight conditions, insufficient vitamin D3 is produced, limiting production of 1,25-dihydroxyvitamin D3, providing a risk for MS. Although the evidence that vitamin D3 is a protective environmental factor against MS is circumstantial, it is compelling. This theory can explain the striking geographic distribution of MS, which is nearly zero in equatorial regions and increases dramatically with latitude in both hemispheres. It can also explain two peculiar geographic anomalies, one in Switzerland with high MS rates at low altitudes and low MS rates at high altitudes, and one in Norway with a high MS prevalence inland and a lower MS prevalence along the coast. Ultraviolet (UV) light intensity is higher at high altitudes, resulting in a greater vitamin D3 synthetic rate, thereby accounting for low MS rates at higher altitudes. On the Norwegian coast, fish is consumed at high rates and fish oils are rich in vitamin D3. Further, experimental work on EAE provides strong support for the importance of vitamin D3 in reducing the risk and susceptibility for MS. If this hypothesis is correct, then 1,25-dihydroxyvitamin D3 or its analogs may have great therapeutic potential in patients with MS. More importantly, current research together with data from migration studies opens the possibility that MS may be preventable in genetically susceptible individuals with early intervention strategies that provide adequate levels of hormonally active 1,25-dihydroxyvitamin D3 or its analogs.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Notdoneyet » Sat Sep 03, 2005 1:17 pm

Hi Marie,
Your story of walking difficulties and your gym circuit brought back a lot of old memories. I had a little tumble yesterday, but I was very tired (on my 23rd hole of the day) and going down a very steep hill. But overall I am in much better shape and I'm sure you will be too.
Good luck,
Colin
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Postby mrhodes40 » Sat Sep 03, 2005 10:15 pm

Rica, Sarah, Colin Thanks! I appreciate the kind support. It is obvious to anyone reading this post that for me this is not an early intervention, and at this point I feel sufficiently concerned about my other option, aggressive immune suppression to want to do this. Some have PM'd me about doing this concerned that it is not proven. Well, it's not. I'm doing it empirically because in my situation it is the best option. I am not functioning well at all, short of miraculous new advances I will not make the next treatment option. I have already decided to not use novantrone, though others like it. My family has heart trouble and the cardiotoxic effects concern me.

I have also read the actual citations, not the abstracts, of the work at VU. Anyone interested in trying this ought to do that. There is much more to the theory than is mentioned in these pages or the abstracts. Scientific people would be intrested in details like why the PCR analysis is not reaching the same conclusions in every university (different parts of the DNA being used) and the fact that in mice CPn can cause autoimmunity (mild but present). Read that again. CPn can cause auto immunity, a reaction to self proteins, in mice. Importantly also that EAE when in presence of infxn with CPn is vastly worsened in terms of severity of disease. Another interesting thing, chlamydia trachomatis DOES NOT cause EAE to worsen or colonize the brain. So it's not just any bug, it's CPn. I posted a thread about alzheimers disease having bacteria involed
"bugs in AD even CPn". This points out the affinity of CPn for brain tissue.

About vitamin D. There are two analogs of the D chain that are testable and part of our system. 25 hydroxyvitamin d and 1, 25 dihydroxyvitamin d. The one that is tested and found low in MS is 25-D, though it is a precursor to 1,25-D. My 1,25 was what was tested. (In Marshall Protocol for sarcoidosis the thing is that the 1,25 tends to be high, much higher than the body needs and out of balance. There is some evidence cited by him in his materials that the activated macrophages in the sarcoid lesion make 1,25-D. So therefore, it makes sense in sarcoidosis perhaps to be concerned with high d, though I'm not a sarcoidosis expert of course. Read about it here: http://www.chestjournal.org/cgi/eletters/123/1/18 )
Also, if you go to pubmed and enter MS and 1,25 dihydroxyvitamin-D you get NO abstracts. None. Since 1,25-D is what Marshall checks, that accounts for the difference. He's looking at something else and it is impacted by other factors.

Now the plot thickens as it so often can in complex metabolic things. If your 25-D is low, you stimilate parathyroid hormone to make more 1,25 so you can continue to function OK because it is necessary to many functions in the body. this stimulation can be so effective you can have a high 1,25 and a low 25-D. I do not know what my 25-D is as it was not tested. I agree that the evidence is compelling that 25-D is low in people with MS and that immune regulation is vitally affected by that. In the abstract Sarah posted above, it mentions a thoery that 1,25 the active analog is the thing that needs to be adequate. As I mentioned mine was high at 52 when 30-40 is good, so I have plenty of 1,25-d. Since I can find no abstracts on 1,25-d in MS (there are a lot of abstracts of 25-d but none on 1,25-d on pubmed. Zero.) we do not know how that tests out for people with MS. SO that is causing the confusion. It's two things.

I will go further after more is known about what my actual level is, but for now, my 1,25 is high enough to let me know it is prudent to wait a bit and see. I do sunbathe and it is summer. I am not worried I'm lacking right now, though whether the high 1,25 is due to PTH stimulation of an otherwise low D status or if it reflects a high overall status is not known in my case currently. In any case D is a fat soluble vitamin and ought to be checked once in a while if you are supplementing. And as I mentioned I sunbathe.

Ok so that's what I know. We will be trying to show the papers I mentioned on the new CPn.org website http://www.CPn Help.org/ though the papers have copyrights that may not allow it. We got them from C. Stratton MD himself and are looking into it. Very cool, huh? Visit the new site and say hello. Jim's been working hard making it nice and it's just getting up now...It's goal is to be a one stop shop for the info related to CPn treatment.
Marie
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Postby Anecdote » Mon Sep 05, 2005 12:07 pm

Marie, here is another one about Vitamin D and its role in evolution:

Recent Results Cancer Res. 2003;164:3-28.

Evolution and function of vitamin D.
Holick MF.

Vitamin D Laboratory, Section of Endocrinology, Diabetes and Nutrition, Department of Medicine, Boston University Medical Center, Boston, MA 02118, USA. mfholick@bu.edu


It is remarkable that phytoplankton and zooplankton have been producing vitamin D for more than 500 million years. The role of vitamin D in lower non-vertebrate life forms is not well understood. However, it is critically important that most vertebrates obtain an adequate source of vitamin D, either from exposure to sunlight or from their diet, in order to develop and maintain a healthy mineralized skeleton.

Vitamin D deficiency is an unrecognized epidemic in most adults who are not exposed to adequate sunlight. This can precipitate and exacerbate osteoporosis and cause the painful bone disease osteomalacia. Once vitamin D is absorbed from the diet or made in the skin by the action of sunlight, it is metabolized in the liver to 25-hydroxyvitamin D [25(OH)D] and then in the kidney to 1,25-dihydroxyvitamin D [1,25(OH)2D]. 1,25(OH)2D interacts with its nuclear receptor (VDR) in the intestine and bone in order to maintain calcium homeostasis. The VDR is also present in a wide variety of other tissues. 1,25(OH)2D interacts with these receptors to have a multitude of important physiological effects. In addition, it is now recognized that many tissues, including colon, breast and prostate, have the enzymatic machinery to produce 1,25(OH)2D.

The insights into the new biological functions of 1,25(OH)2D in regulating cell growth, modulating the immune system and modulating the renin-angiotensin system provides an explanation for why diminished sun exposure at higher latitudes is associated with increased risk of dying of many common cancers, developing type 1 diabetes and multiple sclerosis, and having a higher incidence of hypertension.

Another calciotropic hormone that is also produced in the skin, parathyroid hormone-related peptide, is also a potent inhibitor of squamous cell proliferation. The use of agonists and antagonists for PTHrP has important clinical applications for the prevention and treatment of skin diseases and disorders of hair growth.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Mon Sep 12, 2005 10:47 am

Just a short update. I've been on doxy 100 mg 2xd for 10 days now. I notice a flare up of what seems to be allergy type symptoms, mildly runny nose at night and mildly sore throat, a bit of a headache and some mild malaise, but no big "herxheimer reaction" and nothing at all dramatic. Just thought inquiring minds might want to know..
Blessings
Marie
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Almost 4 weeks updte

Postby mrhodes40 » Tue Sep 27, 2005 5:06 pm

I want to share a couple of things at nearly 4 weeks of doxy. I had an MRI today which appears to me to have larger and more lesions vs the old one one year ago. No surprise there, I've lost a lot of ground in the last year. But this at nearly the beginning of my treatment gives us a good baseline. If anything we might expect doxy alone to have an antiinflammatory effect and therefore a somewhat calming effect on lesions since MRI's look at fluid.

ANd guys, I fell yesterday just after working out at the gym. Couldn't pick that foot up and it just plain tripped me! Gosh, what a spectacle! I've fallen 2 times in three weeks where normal for me is once in several months. I AM weaker on the doxy than I was before. Now could it be natural worsening or exacerbation? Of course. I'm a study of one; meaningless on one level, but to me the only study that matters. Yet it is interesting that I am weaker. People notice and comment. Oh, I'm using my cane all the time now also. Before it was if I have to go a long ways. I still do not use it in the house, but I would not go to the mailbox without it, a distance of about 250 feet now and as recently as 4 weeks ago I did regularly.
So on to the second abx on Fri when my doc (not my neuro, but the wonderful soul taking this journey with me) evaluates my reaction to the doxy so far and decides to let me go further.....I most certainly hope!
marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby kitkat2 » Tue Sep 27, 2005 5:24 pm

Best of luck to you, Marie. I'll be pulling[and praying] for you!

Kitkat2 :)
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Carry on, Marie

Postby Katman » Tue Sep 27, 2005 6:30 pm

Marie, I can only speak for what I was like after only one month. My downward progress was gaining speed for months after I began both Doxycycline and Rifampin in September. In retrospect I reached my worst in January-February. Then I must slowly have been improving untill late May when I realized I had been working for hours and I was not exhausted. In late March I began Flagyl and by late May had done two or three pulses. Certainly we are individuals wuth each a unique presentation but the rest of this motley crew want you to join us. Maybe we are not at the top but it's a big hill! Do what you believe you need to do.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby mrhodes40 » Tue Sep 27, 2005 7:09 pm

Thanks Kitkat2 and Rica! Wow, downhill for several months. OK that makes me feel better then. It's not unusual for this to be. By the way, My sweet husband wanted to look at the MRI..(I have a copy always made for me) I have a black hole! Yes, it's true! I've lost a nerve, the first one ever. That happened on copaxone's watch and while eating no gluten no allergy foods, low fat, antioxidants, fish oil, LDN etc. Crumb.

But at least I have found this great crew of friends. Gosh, no one can know, can they, unless they've been here? The waiting....can it be only 3 1/2 weeks since I started? Goodness. I read everyone's story with great enthusiasm and interest. Keep telling those stories of improvement when you find it has happened.

Did anyone have trouble sleeping? I seem to be sleepless...I'm awfully achy though probably related. I wake up often feeling warm and sore.
I bought beautiful new soft bedding and puffy mattress pad to no avail.
Today I picked up some capsaicin to dull the pain in my poor knees, so I expect that will alleviate the knee pain at least. The thing that hurts the most is the muscles in my trapezius (the spots at the left and right of your neck on your shoulders). Geez Louise! Sarah descirbed resting next to the aga to heat up her neck and arm, but that was after flagyl, I'm only on doxy.
Well, so my friends, thank you for the support.
Marie
Last edited by mrhodes40 on Thu Sep 29, 2005 6:30 pm, edited 1 time in total.
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Postby Arron » Tue Sep 27, 2005 8:05 pm

Marie,

Wishing you my best that you begin feeling better soon. Please let us know what your doctor thinks after your visit.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Anecdote » Wed Sep 28, 2005 3:38 am

Hi Marie,

Its good that you had an MRI so close to starting treatment, like me but about one month different. It will be very interesting to see your next one. When I eventually saw my first one it was frightening, so I'm glad I didn't see it at the time. :(

As for the sleeping, you might consider trying melatonin, used a lot for jet lag and packed with antioxidants. I have always been a light sleeper, unlike my husband, but it got worse on abx. The least sound and I would be awake. A hedgehog rustling round on the terrace and I would imagine someone breaking in. Stupid, because if it was, they would set of the alarm, but you don't think of that in the middle of the night. Once awake, if I was achy I couldn't get back to sleep, but with melatonin I can sleep through until about 6.00 or later. :)

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Tue Oct 11, 2005 10:46 pm

Update at 6 weeks...one month of doxy and two weeks with added azith as well. I am doing a little PT to strengthen my clumsy leg. This is good, if the nerve recovers at all it needs stimulation to work right. I've noticed that I have wierd tingles that are new for me. I tingle in waves from the top down like l'hermittes but in single areas, like from my hip to my knee when I move. I have lots of repetitive zing,,,zing,,,zing,,,tingly feelings in the lumbo-sacral area...bizaar! But then I have sciatica and hoped this would get better so maybe this is coming out to be true for me huh? I also keep having as I adjust my position in bed tingles that take off down one side. It is most peculiar.

I'm not a smidge better yet in terms of motor function. I did work a whole day yesterday and was not wiped out at the end, though this was not exemplified by better walking at the end, just an unusual feeling that I'd like to do something else; a sort of restlessnes. a fluke? we'll soon see. Rica, I'm remembering you got worse for a while and now look at how you do! so I'm not worried. Next year I can take my quilt to the fair...
Marie
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