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ChrisMavo
Member in Phase 2
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Posted: Tue Sep 1st, 2009 23:02 |
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*** THIS IS A COPY OF MY LAST PROGRESS REPORT THAT I MISTAKENLY PUT IN THE WRONG SECTION.. PLEASE NO NEED TO REPLY TO THIS AS I AM INCLUDING IT HERE FOR CONTINUITY OF THE THREAD ***
Well I am on full Phase 1 now having taken two doses of 25mg mino the past few days. I am not noticing much IP yet. What I am noticing is a slight worsening of my ongoing symptoms. These include a bit more dizziness, weakness in legs, and difficulty speaking. These are all common symptoms for ALS patients. I am going to assume, unless I hear differently from some of the more experienced MPers, that these slightly increased symptoms are the first signs of IP on the full Benicar blockade and 25mg of mino.
One last thing I have noticed is I am a bit more tired and kind of mentally sluggish. I am a chess player and played a game Thursday against a player I usually give a good game to.. he beat me easily.... But, if I am killing bugs I can live with some bad chess results 
So far I have not experienced any real light sensitivity. I have the NoIRs standing by if needed. I've tried them out and they are really light tight. It is comforting to know they are there if I need them. Do most MP'ers develop light sensitivity? Or is it dependent on how much the eyes are affected by the Th1 disease that is present?
I have lowered my thyroid medication in half to one grain a day on the advice of my doc. So far I have not noticed any signs of low thyroid.. but maybe the tireness I feel is due to that. I hope to get a blood test next week or week after to test my thyroid, 25D level and other liver/kidney functions that my doc wants.
So I guess I should stay on the 25mg mino for at least a few weeks before I up the dosage to 50mg. My doctor is also new to the MP and he is also learning as we go. I suspect my 25D level is still high due to years of D supplementation prior to starting the MP. From what I have learned so far, the high 25D level would probably be suppressing my IP.
My last question for the night: Should this post go into the Phase 1 topic? I know that it is good to keep all a person's progress reports in one topic, so I used this same thread to post this.
I REALLY appreciate the whole MP community's help and assistance! It feels like I have many friends out there helping me beat this nasty disease! Thanks to ALL of you for your advice and assistance... 
Chris Mavraedis "Mavo"
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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ChrisMavo
Member in Phase 2
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Posted: Tue Sep 1st, 2009 23:10 |
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MP meds: 40mg olmesartan medoxomil every 6 hours. Phase 1, Level 2, 50mg mino
Palliative meds: none
Light exposure: only when going to doctor's appts.
Comments: 1st I'd like to thank ScottK for the great format of his progress reports, which I have copied as they are so clear and concise! Well, I upped my dosage of mino to 50mg and have taken two doses at that level now. I AM feeling more symptoms, my dizziness, speech difficulty and weakness in my legs are all worse than before I upped the dose. So, based on Dr Marshall's information in my previous post, I think I can safely assume this increase in my symptoms is due to IP! It is a bit scary with something like ALS when you feel your symptoms get worse.. but it is comforting to know I am killing some bugs and that the cause is not my illness progressing!
Questions: None at this time.
Chris Mavraedis "Mavo"
Last edited on Tue Sep 1st, 2009 23:13 by ChrisMavo
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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ChrisMavo
Member in Phase 2
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Posted: Tue Sep 8th, 2009 01:54 |
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MP meds: 40mg olmesartan medoxomil every 6 hours. Phase 1, Level 3, 75mg mino
Palliative meds: none
Light exposure: only when going to doctor's appts.
Comments: I was doing OK at 50mg after a week, so I have increased my mino dose to 75mg every other day starting today. I AM feeling a bit more dizzy, my speech is a bit more difficult, and my legs are a bit weaker. So I think that is IP I am experiencing as I progress with higher doses of minocycline. I have not noticed any light sensitivity as of yet... but I am prepared for that with my NoIR's should it occur.
In an earlier post a few years ago I read where Dr Marshall felt that with ALS it was important to keep the pressure on the bacteria by progressing as fast as possible on the protocol. After meeting with my doctor last week he agreed that I should proceed as fast as I could without too much IP. Having said that I think going up 25mg at a time is pretty cautious anyway.
The only other symptoms that seems to have gotten more pronounced is that I am getting these fasticulations or muscle twitches. These are usually common signs of ALS progressing. My neurologist asks me about them each time I am in to see her. But in this case I think the MP is starting to kill off some of the bacteria that WOULD have made my life miserable in a few weeks or months!!!
I have been weaning myself off of some supplements I had been taking... like DHEA, adrenal complex and testosterone. Those are down to a very small dosage now.. and should be totally gone by next week.
Questions: I was curious about Phase 2 even though it is at least a week or so away if all goes well with the 75mg and 100mg doses of mino. Should I go onto that phase even if my 25D levels might be still high? I am scheduled to get a blood test later this week to see what my 25D level is... along with other liver and kidney tests my doctor wants. When last checked about 6 weeks ago prior to starting the MP, my 25D was 38! I have read on here that it is not usually recommended to go onto Phase 2 until the 25D level is down under at least 15 ng/ml. I would appreciate any feedback on this from the moderators.
Just another word about how good it feels to have such a wonderful supportive group of people on the MP website! Even though I cannot get out of the house like I was used to for years... I feel like I have a fantastic support group standing right there beside me! Thanks to all of you for your help!
Chris Mavraedis "Mavo"
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 2189 |
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Posted: Tue Sep 8th, 2009 12:12 |
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Hi Chris,
You may have a special case with what is considered a more aggressive (acute?) bacterial component. However, there have been some discussions where you may find a few gems within...How fast can I go?
How critical is it for 25D to go under 12?
You might also find these threads to be interesting reading... Indicators prior to a Neurological Sabotage
You know it's intolerable IP/herx when ...
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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ChrisMavo
Member in Phase 2
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Posted: Sat Sep 19th, 2009 23:51 |
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MP meds: 40mg olmesartan medoxomil every 6 hours. Phase 1, Level 4, 100mg mino
Palliative meds: none
Light exposure: very little, cover up when going outside and to doctor's appts.
Comments:
I have now taken 4 doses of 100mg mino.. and only have some minor IP! The main IP I am experiencing is an exacerbation of my existing ALS symptoms. These include the following:
- More loss of balance and dizziness when standing or walking
- more weakness in my legs, especially my lower extremities
- more slow and slurred speech
- more emotional and can cry at any little thing! I have been told this is a common syndrome with ALS called psuedobulbar.
- The only NEW symptoms I am having, that is probably due to IP, is muscle twitches in legs especially and other places. This is the scariest aspect because I have learned that as ALS progresses the first sign is muscle twitches or muscle fasticulations as they are also called! But, because I have been on the MP for over a month now.. I am fairly confident these too are IP due to the bacteria in those cells being killed off!
I went to get my blood tested yesterday and will find out my vitamin D level and kidney/liver function next week sometime. Because when I started last month my 25D was still at 38 that is probably why my IP has not been more severe.
I have almost totally weaning myself off of some supplements I had been taking... like DHEA, thyroid, adrenal complex and testosterone. I will know more about whether I can elimate them totally when I get the blood test results next week.
Questions:
In a past posting concerning ALS I read where Dr Marshall felt that with ALS it was important to keep the pressure on the bacteria by progressing as fast as possible on the protocol. After meeting with my doctor last week he agreed that I should proceed as fast as I could without too much IP. Because I have been at 100mg mino for over a week now with very little IP, should I go on to Phase 2?
The other question I have concerning Phase 2 is should I go with the modified Phase 2 and clindamycin ... instead of zith? Somewhere else in a past post I read that Dr Marshall felt that a two abx regime was more effective for neurological diseases like ALS. I have searched in vain to find that post I read late one night.. to no avail!
In reading through the Phase 2 guidelines it does indicate the clindy seems to be more effective at killing nerve infections.
I am waiting to fill out the Phase 2 questionaire until I get the 25D level from my blood testing yesterday.
I would appreciate any feedback on this from the good moderator folks on here. It has been a reassuring thing to have such an involved community of people here online! Whenever I start to feel a little down I can always log on and read about the success stories of MPer's...
It would not only save my life.. but be a great thing to beat this nasty disease ALS and then become a lifelong advocate for the MP!!
Chris Mavo
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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ChrisMavo
Member in Phase 2
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Posted: Sat Sep 19th, 2009 23:54 |
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Oh.. one last thing.. when I first started the MP I had some brain fog! I am a tournament chess player and I play on Thursday evenings with some other very skilled players. Well the first two weeks on the MP... I lost my games miserably. But the last three weeks I have WON quite easily.... !!!
So maybe the MP is ALREADY improving my chess game!!!
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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DNStog
Moderator
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Posted: Sun Sep 20th, 2009 05:30 |
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Brain fog is probably the culprit and it will wax and wane through much of your MP journey. Make sure you play for fun and not money... ...you never know when it will hit.   ---Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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ChrisMavo
Member in Phase 2
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Posted: Sun Sep 20th, 2009 07:05 |
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Thanks Donna!
I am still waiting to here any feedback from the moderators on my other progress post earlier today.
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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jasmine
Member in Phase 3
| Joined: | Fri May 4th, 2007 |
| Location: | Michigan USA |
| Posts: | 228 |
| Status: |
Offline
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Posted: Sun Sep 20th, 2009 13:32 |
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Hi Chris,
I am not a moderator here at the MP, but I am a member in Phase 3 who followed Phase 1 with Mod Phase 2 due to my intense neurological symptoms. This has proven helpful in reducing brain fog and created better clarity for the rest of my MP journey. This also reduced my level of nerve pain, and my MRI at 6 months into the MP showed reaborbsion of a synovial cyst in my neck joint that would have required surery!
Clindy has been a challenge for me on the MP, and I have found it important to be watchful for increased anxiety and nerve pain as a signal to adjust my meds, sun exposure, diet and/or levels of rest.
Some folks find that increasing water intake with sea salt (RealSalt is good) helps reduce dizziness. You should check with your doctor first if you have been placed on a reduced-sodium diet. And it's important to remember to lie down when dizzy to prevent a fall.
Hope this helps you, Chris, in your healing journey on the MP!
Well wishes, Jasmine
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PTLDS 53 years,autoimmune thyroid disease,migraine,CFS,FM,neuro pain,arthritis,osteopenia,anemia,scoliosis,IBS,MCS,Lupus?; 125D 45 6/07; 25D 12 8/09; PH1 6/07, ModPH2 7/07, PH2 1/08, PH3 12/08; Synthroid; estradiol patch; Noirs; low lux home.
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edj2001
Moderator
| Joined: | Tue Oct 18th, 2005 |
| Location: | Allen, Texas USA |
| Posts: | 225 |
| Status: |
Offline
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Posted: Sun Sep 20th, 2009 17:49 |
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Hi Chris,
When I started the MP my 25-D was 40 ng/ml, about like yours, so after spending about 4 weeks on 100 mg of mino I began modified phase 2 with clindy. I chose clindy because if I had an intolerable reaction I knew it would be over in two days where Z stays in the body much longer.
The rate at which you progress is based on tolerable symptoms. It is not desirable to try to move faster than that. Some people experience increased IP as the 25-D drops so if you have moved too fast it can cause intolerable IP.
I also had a lot of neuro symptoms and clindy exacerbated them. I have been on clindy now over 3 years and am happy to say I have my brain back (most of the time ). However, it is called the clindy "monster" for a reason. In my case the most serious symptom was depression. You must have a support safety net to keep you grounded as depression is an insidious disease.
I am now taking benicar every 4 hours. I find one of my last symptoms, productive cough, is better controlled at that dose. Don’t hesitate to add benicar as you need it. Please follow the guidelines to the letter.
Keep asking questions, we will try to help/
Gene
Chris, When you start 2 antibiotics, do please post your progress in the phase 2 forum. Thank you, Admin.
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Sarc98 A.Fib uveitis sk cancer basal/melanoma colon tmr bladder tmr bph| propafenone Armour proscar Guaifensin | 1,25D=50 10/05| 25D=7 4/08| Gene's Story| avd l&D|
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ChrisMavo
Member in Phase 2
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Posted: Sun Sep 20th, 2009 20:37 |
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Thank you very much Gene and Jasmine for your thoughtful replies to my progress post! It sounds like going on the modified Phase 2 is my best course of action given my neurological symptoms.
Give the guidance of you both, I shall be very careful when I start the clindy in Phase 2. I am still waiting for both the clindy and the zith to arrive from my mail-in pharmacy.
Chris Mavo
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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ChrisMavo
Member in Phase 2
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Posted: Sat Sep 26th, 2009 01:39 |
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MP meds: 40mg olmesartan medoxomil every 6 hours. Phase 1, Level 4, 100mg mino
Palliative meds: none
Light exposure: very little, cover up when going outside and to doctor's appts.
Comments:
I am still on phase 1 and waiting for my clindamycin to arrive by mail. So next week I should be starting on modified phase 2 with mino and clindy.
Just got some blood tests back and got some good news! My 25D level has dropped from 38 back on July 26th to 27 on Sept 18th! Not quite where I need to be.. but good progress towards my goal of < 12!
My other levels seem good... my thyroid is in normal range even though I have already cut back 2/3 on my thyroid medication!
One thing I have not talked to the doc about is my Creatinine level ... it is low at 0.69 mg/dL. Is this normal on the MP to have this drop? I know it is a liver function test..but know very little else about it. If I am killing some bacteria would this level drop?
My symptoms are the same as last week only a little worse due to increased IP:- More loss of balance and dizziness when standing or walking
- more weakness in my legs, especially my lower extremities
- more slow and slurred speech
- more emotional and can cry at any little thing! I have been told this is a common syndrome with ALS called psuedobulbar.
- The only NEW symptoms I am having, that is probably due to IP, is muscle twitches in legs especially and other places. This is the scariest aspect because I have learned that as ALS progresses the first sign is muscle twitches or muscle fasticulations as they are also called! But, because I have been on the MP for over a month now.. I am fairly confident these too are IP due to the bacteria in those cells being killed off!
So now, with the new blood testing results, I will continue to totally weaning myself off of the last remaining meds I have been taking... like DHEA, thyroid, adrenal complex and testosterone.
Questions:
What is the true reason we avoid sunlight on the MP ... is it to keep our vitamin D levels down or to avoid sun flare symptoms? I have read a lot about this on the website but some things I have read are a bit contradictory and I am still confused about this. I have had NO light sensitivity issues as of yet. So I am wondering if I still need to be so cautious about sun exposure and wearing NoIR's when on the computer or watching TV.
As I mentioned above my next progress report should be in modified phase 2.
Chris Mavo
San Francisco
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Sep 26th, 2009 02:25 |
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You will get ill from sun flare symptoms long before it might contribute to your 25-D storage
Your creatinine will surge soon enough, as your kidneys recover, and you will be able to remind Doc at that time that it was low when you started. The info about that is on page 6 of this transcript:
http://AutoimmunityResearch.org/transcripts/WCH_2008_seminar_transcript.pdf
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ChrisMavo
Member in Phase 2
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Posted: Sat Sep 26th, 2009 09:17 |
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Thank you Dr Marshall for your quick response! I'll reassure my doctor about my creatinine level and give him the information from the transcript you linked to.
Can I assume that the drop of my creatinine indicates some IP, and hence bacterial die off, is taking place even with my 25D still high at 27?
And it is nice to know I don't have to be so paranoid about limited sun exposure causing my 25D level to rise! I have been almost like a cave man trying to limit my sun exposure...
Chris Mavo
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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ChrisMavo
Member in Phase 2
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Posted: Thu Oct 1st, 2009 07:26 |
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I have received both my zithromycin and clindamycin today! Very nice that I got them compounded at the proper dosages instead of having to split capsule or tablets!
I plan to start on Phase 2 tomorrow.. but wanted to ask one last time for one of the moderators on here to tell me if I should go on modified Phase 2 due to my neurological symptoms? Somewhere on the site I had read where Dr Marshall thought the two abx of mino and clindy were more effective for neuro illnesses like ALS. I have not been able to find where I had read that.
So ... what do you think.. regular Phase 2 or modified Phase 2 for me? My doctor is not experienced enough yet with the MP to make this decision for me.
Thanks for all your help... it is truly appreciated....
Chris Mavo
Last edited on Thu Oct 1st, 2009 07:27 by ChrisMavo
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Oct 2nd, 2009 02:42 |
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Chris,
I would start on modified phase 2, for two reasons - first, Clindamycin has shown an amazing ability to target neurological deficits - second, it is easier to adjust the Clindamycin dose if the 25-D level suddenly drops and rapidly increases the level of immunopathology. Zith stays in the tissues for 45 days, Clindy and Mino for 18 hours
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ChrisMavo
Member in Phase 2
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Posted: Fri Oct 2nd, 2009 08:58 |
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Thanks Dr Marshall for the reply! I will start on the modified phase 2 tomorrow with 25mg mino and 37.5 mg of clindy. My ALS seems to be progressing slowly so I should have time to do modified phase 2. I know I have to be aggressive in order to stay ahead of the ALS progression... and modified phase 2 sounds like the right medicine to stop it in it's track...
Thanks, as always, for all you do for people all over the world with Th1 disease and for taking the time from your busy schedule to answer my posts! I fervently hope to beat this ALS nasty .... and become one of your most outspoken advocates for the MP!
Chris Mavo
San Francisco
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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ChrisMavo
Member in Phase 2
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Posted: Fri Oct 2nd, 2009 09:03 |
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One last post in my phase 1 progress reports. I just got home from winning my fifth chess game in a row in my tournament! I am now leading the tournament with a 5-0 score... So, it is safe to say, the MP has NOT affected my logical thinking with brain fog as of yet. My performance in my chess games, which are with other really good players in Berkeley, is an excellent barometer for how my logical thinking is doing.. so far so good...
We'll see what happens as I start modified phase 2 with clindamycin.
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PLS/ALS, speech difficulty, dizziness, leg weakness, overly emotional, Ph1Aug2609, 11/09: 25D-20, 9/09: 25D-27, 7/09: 25D-38, 1,25D-46, Mod Ph2Oct09, 100mg Mino + 150mg Clindy
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