 |
| Author | Post |
|---|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Fri Feb 18th, 2005 00:35 |
|
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
____________________
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
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Wed Mar 16th, 2005 08:40 |
|
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
____________________
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
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Wed Mar 16th, 2005 21:44 |
|
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 ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Wed Mar 16th, 2005 22:44 |
|
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.
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Mon May 16th, 2005 10:27 |
|
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:
- Increased ability to walk with zimmer frame (am nowhere near having the balance to walk unaided). When my physiotherapist is here I now manage to stagger a distance of about 15 metres, which is at least 10 metres more than I did at any point in the previous 1½ years
- Improved balance in standing so I’m now able to e.g. pull a t-shirt over my head without having to sit down first to avoid falling
- Continued improvement in fine motor skills in hands, witnessed e.g. by
- Ability to cut nails without being complete liability to myself with nail scissors (a dangerous weapon indeed in the hands of the ataxic!)
- Ability to move my finger from stretched arm position to touch the tip of my nose. This is commonly used in neurological examinations and I’ve performed this exercise numerous times since falling ill, first for various doctors, then just to see where I’m at. Just a few months ago, somewhere on my finger would hit somewhere on my nose. Now I can do tip to tip on most days
- Ability to now pour myself a drink with one hand only (if container is not too full) as opposed to having to hold on with two hands for control
None of my improvements so far change how disabled I basically am, still they motivate me to continue because I can tell that, however painfully slowly, 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
|
jolbell69
Health Professional
|
Posted: Tue May 17th, 2005 00:02 |
|
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
____________________
DX:ChronicBorreliosis&Bartonella,ME/CFS,AutoimmuneThyroid&Hypoadrenia.
TX:Armour90mg,Prozac.Started MP:19may04.
25,D=16.7ng/ml,(Jan05).Benicar,40mg,q6h.Restart 8May09 after 5months break.VitD,25=8ng/ml(May09)
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Tue May 17th, 2005 13:45 |
|
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
____________________
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
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Sun Jul 10th, 2005 21:47 |
|
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
____________________
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
|
Dr Trevor Marshall
Research Team
|
Posted: Sun Jul 10th, 2005 22:05 |
|
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...
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sun Jul 10th, 2005 22:06 |
|
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 ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
jolbell69
Health Professional
|
Posted: Wed Jul 13th, 2005 21:11 |
|
Dear Marianne,
I am so pleased you are seeing some inprovement - no matter how small!! May it continue!!
Jo.xx
____________________
DX:ChronicBorreliosis&Bartonella,ME/CFS,AutoimmuneThyroid&Hypoadrenia.
TX:Armour90mg,Prozac.Started MP:19may04.
25,D=16.7ng/ml,(Jan05).Benicar,40mg,q6h.Restart 8May09 after 5months break.VitD,25=8ng/ml(May09)
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Tue Aug 16th, 2005 07:37 |
|
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):
- Improved swallowing function – when I fell ill I could only drink absolutely miniscule sips of water at a time and even then I would often choke and cough violently. The other day I suddenly noticed I’d just drunk half a glass of water in one go, without choking or coughing or even thinking about it
- Stronger voice – friends recently commented that I’m again able to raise my voice to tell my children off , a year ago, they said, they could hardly hear me when I spoke
- Improved strength/coordination in hands – when I had a pizza the other day I could cut it myself. The last time I had one (about two months ago) my husband had to cut it for me
- Normalization of weight/metabolism - when I fell ill just over 3 years ago I lost 10 kgs (about 20 pounds, sorry can't remember the exact conversion) in the first 4 months. There was no particular reason or explanation for it but as I didn’t lose any more weight, it wasn’t really a problem. But no matter what I ate I didn’t gain weight after that. I could eat all the cakes, crisps, chocolate etc. I wanted, it didn’t make any difference whatever to my weight. Until the last few months. I’m definitely filling out again (not more than what is in keeping with what I eat) and that indicates to me that my metabolism is returning to normal
So, onwards and upwards!
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
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Mon Oct 17th, 2005 12:22 |
|
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
____________________
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
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Sat Dec 17th, 2005 00:39 |
|
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
____________________
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
|
Dr Trevor Marshall
Research Team
|
Posted: Sat Dec 17th, 2005 05:11 |
|
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
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sat Dec 17th, 2005 09:32 |
|
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 ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Sat Dec 17th, 2005 17:01 |
|
Dr Trevor Marshall wrote: Marianne,
Why do you feel that the MRI scan is a good predictor of permanent brain damage?
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
____________________
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
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Thu Mar 2nd, 2006 00:25 |
|
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
____________________
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
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Thu Mar 2nd, 2006 01:14 |
|
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 ....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Marianne L.
inactive member
| Joined: | Fri Jul 16th, 2004 |
| Location: | Skive, Denmark |
| Posts: | 65 |
| Status: |
Offline
|
|
Posted: Thu Mar 2nd, 2006 06:44 |
|
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
____________________
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
|
Current time is 10:33 | Page:   1 2 3 |
|
|
|
|
