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GeorgeinRollaMO
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Posted: Mon Feb 20th, 2006 14:38 |
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6th day of the same cycle...
I fell to sleep nicely last night, but then awoke after a half hour or so, with insomnia. I got up and read a book. About one am, when I arose from sitting, I had a tremendous spasm/cramp in my right leg hamstrings. This is what I would have previously when I cleaned my fids' cages. I had no trouble yesterday while doing so, but it caught me afterwards, which is different. I also had spasms in both of my hands before I went to sleep to the point I could not use them for awhile. I assume that these spasms are herxing. And, I had the stomach with a knot in the gut, and nausea, again last night after going to bed for the second time. I assume that this was a herx, too.
I awoke feeling relatively good and energetic after about four and a half more hours of sleep. Neuropathy in feet seemed calm, too.
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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GeorgeinRollaMO
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Posted: Sat Feb 25th, 2006 07:43 |
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I skipped mino during the last cycle one day, so that I wound up with the last three days of the past cycle being fed from the one mino doze.
I took 100 mg on the morning of Feb 22. I had herx about 4-5 hours later, which herx continued for a number of hours, then stopped.
When I awoke the following day, Feb 23, I felt as though I was herxing, but by nightfall the herx had dissipated, and I felt "normal".
I awoke on the third day, Feb 24, with a very strong feeling of herxing, which continued throughout the day even until I went back to sleep at 11PM. I had had insomnia during the night, and slept from about 6AM until 6PM.
I awoke on the fourth day, Feb 25, this morning, at 2:30AM, then realized I was not going back to sleep right away, so came and sat at the computer.
I feel somewhat herxy right now. Groggy, poisoned.
I should be taking more of my second abx in a few hours. Will make a decision later about whether I will take the abx today or skip. Maybe, it is building up in my body....leftovers from a cycle that should have been cleared out?
I have been able to stay in my very darkened room almost continuously this cycle, but not totally. Did not go outside at all, except for one trip after dark.
I have been dosing with Benicar essentially every six hours, but not totally very strict on that schedule...depending upon my need to sleep....somethings going out to every eight hours.
Maybe, it is my second abx, that has kept my herzing going this last day of the cycle, yesterday. But I did have a definite break in herxing the evening before.
I definitely get two herxes per mino dose. The first starting about four hours after taking mino that last four to six hours long, then stops. Then, starts up again, but I am usually asleep then, and notice the herx when I awaken, which then stops later in the second day.
My second abx herx starts about the second or third day and lasts about three days. Except for perhaps this tailend-Charlie herx that I am experincing yesterday and now.
This is what was happening to me in the two months prior to my vacation starting on September 26, 2005. If I stayed in the dark very heavily, with no mino, I wound up with a run-on herx. Presumably from the second abx.
I think that 100 mg of mino has a dampening affect on the herxing.
So, the question is... is the dampening due to an anti-inflammatory effect of mino, or, a actually lessening of the killing of bacteria causing a lessening of toxin. I have no clue!
I just try to put up with the herxing as much as possible. I do see a good affect to all of this with my lower leg spasms getting better...which have been my biggest symptom. I stretched big time this morning just before getting out of bed, with no bad affects. Some months back, I would have had big time spasms in my lower legs and/or feet. I also was able to slide my feet into my slippers without causing a spasm. I seem to be returning to normal living.
I had increased leg spasms during this second abx portion of herxing, but not intolerable as when I had taken too much second abx once previously, and stomach pains with nausea. And I had hand spasm involvment this cycle... really bad hand spasm to where I could not use my hands for maybe five to ten minutes. I have had fleeting head pains; not regular headaches. I have had anxiety and depression, and irritability... and lots of insomnia. And I think that maybe I have had heart involvment, too. When I am on my back in bed, I feel something in my heart area.... maybe, a skip in the beat...hard to tell exactly what it is...every so often...but not very often. I do not notice any "heart" involvment at other times of the day.
DW can see the affect of all of this. Lucky for me that I have a "wife" that will bring in food, etc. Most of my life is put on "hold", and, I am lucky to be retired to be able to do so. But the important thing is that the MP sure seems to be working, even if the "way" is not so desireable. If I had cancer or tuberculosis, I would be happy to do anything, too, to rid me of my disease.
Wellness to all!!!
Dark Vader (aka, George)
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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BARNEY
Member in Phase 3
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Posted: Sat Feb 25th, 2006 12:42 |
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George (alias Dark Vader),
I hope I am not misunderstanding what you are saying, but....here goes...
Why are you forgetting Benicar? (once in a while, I am guilty) It is important to hold back the inflammation. I take mine 20mg q3hrs and 40mg at midnight, it seems to help level things out (IMO).
Have you tried taking 25 or 50mg Mino every 12 hrs to keep the herx in check instead of suffering thru it? (I am finally learning to do that) I also suffer it out (probably way more than is necessary). Aussie Barb gives excellent advice (and follows it too) about using more mino/Benicar and not suffering thru the herx and that it is not necessary to suffer for the bugs to be healed. I am trying to take her advice....must admit...I am not always good at it.
When I increase to q12hr. (3hrs later) I take 2 caps of acidophilius so my stomach does not have a hard time with the extra abx. Ordinarily I take 1 cap.
Hope this gives help and encouragement George...as you so often do.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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jrfoutin
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Posted: Sat Feb 25th, 2006 15:57 |
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Barney, good question.
Earlier in George's thread (Nov 27, 2005), JCWat101 describes how those with compromised systems may not be getting the most bang for their herx buck with a QOD mino dose schedule (this is the direct link to that post). To the point:
So, my thought would be for people who don’t have a clear pattern of herxing that clearly disappears a few hours before the 48 hour mark, it might be a good idea to do at least a week at each dose where they can try a 3 day cycle, before moving up to the next dose. They might even try one 4 day cycle just to be sure they don’t Herx then as well.
During ModPhII, I thought about JCWat101's observations with her father and tried 3 day mino dose schedule and found I had hidden herxing available on the 3rd day. So I would start any level with a cautious QOD. Then, when I thought herxing had waned for that level, would do a 3 day to get all the herxing out of any level--It worked for me. Given that more frequent dosing turns herxing off, it would make sense that extending out the mino dose out may allow the immune system to keep doing it's job.
Since the pulsing concept at the heart of the MP is about kick-starting the immune system--and wanting only tolerable herxing, a full bag of mino dosing options might include:
- q12h (and q6h or q24h variants): Stopping intolerable herx with more frequent doses of mino (from Aussie Barb's brainstorm).
- q48h: Standard QOD expectation for herxing (heart of the MP).
- q72h or even 4-day: JCWat101's some-don't-clear-mino-so-quick or for those wanting to get all possible herx (bug killing) after QOD dosing calms down, with 3-day or even 4-day extension before moving to the next level. Ames experience on this thread may support that concept, too.
After getting a handle on PhII, I'm starting to alter my mino dosing to include some 3-day extensions for cycles after initial QOD herxing has calmed down for that level. We'll see how it goes.
The guiding principle, of course, is tolerable herxing no matter what.
Last edited on Sat Feb 25th, 2006 17:11 by jrfoutin
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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GeorgeinRollaMO
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Posted: Sat Feb 25th, 2006 20:44 |
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Thank you, Barney and Janet, for your thoughts about the matter.  I like the synergism! It makes me think. 
I mention the run-on herx during this last, third day of mino because I wanted to show what the effect of staying in the dark might do... get the immune system to start working on its own, possibly. There was a definite stop of the herx on the tailend of day two, then a re-start of the herx at some unknown time on day three. This third-day herx then had to be because either, 1.) of left-over second abx, or, 2.) the immune system kicking in because of staying in the dark.
I had this effect happen during Phase One, too, most noticeably when I stayed in the dark. I think, if I remember correctly, I first noticed it happened when I had an URI going on, and just felt like staying in bed. But then, I noticed it happened too, without having a URI, with just staying in the dark more.
Some additional information that I have gained that I have not had chance to mention as of yet, is that the herx feeling that I had this early morning did stop later in this morning. I then did start another cycle of both abx. I chanced that the herx that I was feeling had ended, if it was caused by the second abx not having dissipated earlier. Or, the immune system had run out of its own steam.
I can see no way that one can tell if it is because of the dissipation of the second abx or the immune system running out of its own steam. I can see where if one did NOT renew abx, and the herx continued for a good number of days, eg, ten days, it must then be because of the immune system doing its thing on its own. But with a stoppage as I did have this later morning, I am at a loss to tell which reason.
I have to say, point blank, that the discovery that extra/more frequent dosing with mino is a great extra tool for reducing herxing when it is needed!!! Thank you! Barb. The other tools being, reducing the abx by taking less or extending the cycle, and, the taking of extra Benicar.
However, I have to question about the taking of mino to stop or reduce herxing on a regular basis. How does one know that the mino is stopping the effect, inflammation, or, the cause of the effect, killing of the bacteria (which reduces the toxins)? We have no meter that we can insert into the body to tell the level of the toxins or the level of the inflammation. We can only guess.
The only and very best gauge that we have to tell if we are killing bacteria is herxing. Or, did I miss something in class 101? Does anyone have any other way of telling rather rapidly if we are killing bacteria? 
And it would seem that the intensity of the herx should be in direct proportion to the amount of bacteria dying off. Or, our bodies ability to handle the toxins...ie, to get rid of them or neutralize them.
What with those thoughts, I do not mind feeling the herxing. As long as it is within my tolerance level. I will put up with the lousy feeling rather than gamble that I am not killing off the bacteria. Each persons tolerance will be different, I am sure, and also, what one wants to do in life, such as go to work, etc.
I happen to think that one (namely, me) should control the amount of herxing by the amount of abx used, instead of interferring with the kill off by taking any extra chemical, because any extra chemical is really a toxin for the body to get rid of, too.
I go along very strongly with Joyce's thinking of getting the most kick for the buck not only in actually money spent for meds, but also, for the buck of the body getting rid of toxins, both bacterial and med types. I used waiting for the herx to stop before doing any more mino in Phase One quite regularly. And I, usually, use the same technique in Phase Two. I was glad to read of Ames also finding out the same thing happened to her.
But we are all slightly different, and also have slightly different goals, too. Some folks have to make a living in the work-a-day world, or whatever.
What prompted me writing my report as I did was Sharon (Shrnhml) request for others' findings with run-on herx due to staying in the "dark". Perhaps, my choice of words in describing my reactions were not the best... too much brain fog this morning.
I like the synergism at work here!!! Thanks for all inputs!
I did start the new cycle this morning, and I feel a little bit of light herxing this afternoon.
Wellness to all!
George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Dr Trevor Marshall
Research Team
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Posted: Sat Feb 25th, 2006 20:56 |
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Janet,
Remember that Dr Thomas McPherson Brown's RoadBack protocol is to take the mino on Mondays, Wednesdays and Fridays. Which has a built-in 3-day cycle over the weekend. I suspect that his RA cohort were not so ill as to get their Sundays wiped out by the day 3 herx, which was, in my experience, often the worst day
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jrfoutin
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Posted: Sun Feb 26th, 2006 00:20 |
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George: Gods Must be Crazy. Writers gave the spunky sidekick guy that kept fixing the jeep a line about the healing method of being covered in dirt (no light) until he was cured. I thought about that a lot when starting the MP. Maybe this particular group of folks knew something? (smile). Isn't staying in the dark the idea of the cave and covering up? All I know is I have fewer problems and less light sensitivity with my eyes during the day when I do a complete blackout with my eyes at night--compared to low lights of the cave during the day. Also, DrTM also keeps saying things like 25-D (ingested) must be down or the balance required for healing doesn't happen. Also, that the immune system is nudged into the desired action to herx by the Benicar/ABx, not the other way around.
As for long-term use of more frequent mino? Dunno. I've not yet been there and I'm clearly not through all the ABx combos of the MP. Just seems that other ABx therapies have more frequent mino and they don't have the success of MP pulsing, so I am reserving more frequent mino (with more frequent Benicar for that matter) for the time I get an intolerable herx and I hope it doesn't last too long when it hits! I'm just hoping that by clearing out all possible herx at one level before moving on might keep me out of the hot herx seat.
Dr Marshall: Exactly, so I never extend initially on any new level, and only after I am sure I've already exhausted a level of herxing at qOD. Instead of moving on, I extend for one rotation. ("when I thought herxing had waned for that level, would do a 3 day to get all the herxing out of any level.") Not sure it would be wise to overlay a 3-day according to something as distantly related to immune system function as a calendar week (somewhat like previous ABx therapies before MP). Much better for a patient to sense when they are ready for more herxing with 3-day mino or to tier up to next level--another novel MP concept.Last edited on Sun Feb 26th, 2006 00:20 by jrfoutin
____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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GeorgeinRollaMO
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Posted: Mon Feb 27th, 2006 05:45 |
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Janet,
You said above, "As for long-term use of more frequent mino? Dunno. I've not yet been there and I'm clearly not through all the ABx combos of the MP."
I am not advocating more mino! I am advocating taking the least abx that will give one herxing to a tolerable level for that person, to the limit for normal dosing.
There is the exception listed in the MP guidelines.... Why and when do you recommend taking minocycline frequently? ... for use when one has an intolerable herx or runaway herx. But that is not the normal dosing situation.
Just thought that I would set the record straight as to what I meant above.
Dark Vader (aka, George)
Last edited on Mon Feb 27th, 2006 05:46 by GeorgeinRollaMO
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Aunt Diana
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Posted: Mon Feb 27th, 2006 07:48 |
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Hello all, I felt a need to put in my 2 cents.
I've been experimenting with 3 day dosing....still herxing...and yesterday I decided to push it another day.....I still felt I was slightly herxing today.
Did take 50 mg.mino dose however this evening and so far not much change in the way I feel.
I have been thinking alot about the fact that I've been really living in the dark for the past month. I don't go out at all during the day and if I must for even a few minutes...I cover up completely with scarf over my entire face. Obviously someone else is driving.
My diet must be about as good as possible by now....I don't have any enriched products around and cook mostly from scratch using fresh everything.
So I'm wondering if it isn't more the very low vitamin D level that may be causing my herxes to feel more intense...(my next test is in a few weeks) but the last D test came in at 15...that was two months ago.
It is interesting that animals always retreat to a cave, if they can, to heal. I feel that the sleeping and staying in bed (which is so foreign to me) is also really important. I'm starting to just "go with the flow" and if I don't want to get out of bed, I don't. Although one frustrating thing is I lie there thinking of the things that need to be done, oh well, such is woman's lot.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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GeorgeinRollaMO
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Posted: Tue Feb 28th, 2006 00:47 |
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Third day of the 9th Cycle of the second abx of Chapter Two. Took 100 mg of mino at 6AM today also. Ben Q6h plus about 70% of a full dose of a second abx.
Light herxing during the preceding two days. The second abc herx hit today for sure! Feel real groggy, brain fog, and wanting to sleep lots, and doing so... and very irritable. Felt a skip in the heart again, I think, or something like that. Of particular note, is that my lower leg spasms increased again, somewhat, after being almost a nothing for four or so days.... and this time, involved spasm of my right big toe. The right big toe is where I discovered the neuropathy first.
The second abx seems to be zeroing in on the neuropathy in my lower legs and feet. I seem to get more herxing there than any place else. And I seem to notice a slight improvement in the neuropathy symptoms after each use of the second abx.
Staying in my very dark bedroom most of the day and night.
Wellness to all!
Dark Vader (aka, George)
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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GeorgeinRollaMO
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Posted: Thu Mar 2nd, 2006 13:10 |
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Sixth day of the 9th cycle of Chapter Two, took 100 mg of mino yesterday.
Well, day three thru five of this cycle were with just enough somewhat strong herxing. Spasms in lower legs happened again day three thru five, but not too many, nor very strong, and mostly on the right side. Slept all day yesterday. Did not have a full night's sleep last night, but still awoke feeling somewhat energetic this morning. What a difference a day makes!!! as compared to yesterday morning. Did have some pressure in the head for awhile yesterday evening... maybe a minute in duration. And much burning of the eyes most of yesterday. Did have some rather intense but of very short duration, and very localized, pain in left shoulder a number of times, which I think was injured in my bad fall of July 1981. My tinnitus sure seems to be worse on days that I herx. Mood is much better today than yesterday.
An older couple is lying in bed one morning. They had just awakened from a good night's sleep. He takes her hand, and she responds, "Don't touch me." "Why not?" He asked. She answered, "Because I'm dead." The husband asked..."What are you talking about? We're both lying here in bed together and talking to one another?" She said, "No, I'm definitely dead." He insisted, "You are not dead. What in the world makes you think you're dead?" "Because I woke up this morning and nothing hurts."
Won't that be the day!!!
Wellness to all!!!
Dark Vader (aka, George)
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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alayne
Member in Phase 3
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Posted: Thu Mar 2nd, 2006 15:50 |
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George, I too have a left shoulder that flares up on the MP - previously torn rotator cuff.
Just wanted to thank you for the belly laugh this morning! I guess you could swap out "older couple" with "MP couple" and get away with it too.
Cheers! Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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GeorgeinRollaMO
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Posted: Thu Mar 2nd, 2006 16:26 |
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Yep! I think it is a torn rotator cuff. Probably, lots of scar tissue.
I just couldn't help myself in telling about the old couple. Glad that you enjoyed!
Dark Vader (aka, George)
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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BARNEY
Member in Phase 3
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Posted: Thu Mar 2nd, 2006 16:39 |
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George,
The story of the old couple was great. We all need a good laugh.
Hope you are 'feeling better' today all day.
HANG IN THERE, WE WILL MAKE IT!!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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GeorgeinRollaMO
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Posted: Fri Mar 24th, 2006 15:54 |
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Seventh day on March 22 of my 11th cycle of Chapter Two in Phase Two, 100 mg of M at 48 hours
Each cycle in Phase II further into the MP seems to cause lower leg/feet spasms at some one or two nights only period, during the period of days 3 to 6, and with none during the other days. This is a major achievment for me. It has been a long time coming but most welcomed, as this has been my worst complaint.
And I have slept when I am supposed to be sleeping, instead of having insomnia, for the last five nights. A welcomed joy!
I have been extra diligent to stay in my cave, and avoid light.
I am planning to stay on this second abx to see if I can get rid of these spasms.
The mind herxing has been going on rather strongly though. I think that DW would trade me in for a new model. I seem to have lost my jollyness. I must be killing off many of the bacteria.
March 24.... I had to get light exposure for three hours yesterday, which seems to have upset what I said above, written two days ago. I had mild insomnia last night, and had four sets of mild lower leg spasms last night. Was it on account of the hormone flare, or, the larger amount of salicylates I had yesterday, too!?!?! I was too tempted by the good looking pineapple to pass it up to keep things constant except for one thing... the extra light.
Wellness to All!!!!
Dark Vader (aka,George)
Last edited on Fri Mar 24th, 2006 15:55 by GeorgeinRollaMO
____________________
Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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GeorgeinRollaMO
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Posted: Fri Jun 23rd, 2006 07:40 |
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I seem to be on a plateau now with Phase III.
Herxing very regularly.... mostly sleeping, feeling like a pile of doo-doo, it seems. No localized pain.
Nocturnal lower legs spasms still seem to be under control, which spasms have been my worse symptom. Full week now of no spasms, except maybe a mild one upon awakening and stretching. But it goes away fast.
The lower leg spasms were definitely connected with herxing in Phase II.
If I get nothing else but that I have no spasms, the MP will have be worth it.
Hearing went to pot on Sunday, April 30, 2006. Everything sounds as though as though the loudspeaker paper element was torn...most indistinct...not readable. A hearing aid in the right ear helps some. Without the hearing aid, DW has to be right in my face for me to understand her.
There is some variance so I am hopeful that the phenomena is a herx of some nature.
Wellness to all!!!!!!
Dark Vader, (aka, George)
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Carole
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| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
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Posted: Fri Jun 23rd, 2006 23:16 |
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Hello, George!
Welcome back! I missed reading your interesting posts, so I'm happy to see that you've returned!
I'm so sorry that your hearing issue has not yet resolved! Hopefully, that will be short-lived! Take care . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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GeorgeinRollaMO
Member Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
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Posted: Sat Oct 28th, 2006 00:20 |
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Hi, All,
Some people say that one must live in purgatory for a spell before getting into heaven. I am there... purgatory ...looking to get into heaven some day. Herxing away to kill all of those CWDs. 
I am doing Phase III. I am on my 14th cycle of the three combinations. I seemed to be on a plateau with improvement, so I have swapped off the one abx for another on the last two cycles. The first week was "enlightening", but since, I have been feeling better than I have in a long while. My longer-abx cycles are from ten to twelve days long, depending upon whether I am getting any lower leg spasms or not. I will continue to do the MP treatment, until my D's are under the recommended 18 and 12 test scores, plus a length of time that would allow my innate immune system to come alive. Who knows when that will be!!! It is fun to argue with Trevor once in a while. But I truly believe that he is on to something, and have no doubt as to that!!!!!!! And thank him for being an ornery cuss to figure this all out. Hey! I am not an ornery codger! Don't pass along false rumors!
I am currently at max amount for two abx and the beginning for the new third, after having worked up to the full amount for the original third, also. I will work up to the full amount for the new third abx, then use a fifth abx, then start seeing what lower dosages of each of them do.
As the saying goes, "I have but one life to give!" Why not use it to good purpose!?
My leg spasms have returned, but they are most definitely, IMO, connected with my herxing. IMO, it is the toxins of dying bacteria that attack the compromised nerves, and short circuit the signals to the muscles somehow. I have been getting the leg spasms mostly doing the high point of herxing for one of the abx, in the middle of the cycle. A good improvement, as compared to pre-MP.
I think that I perceive that my neuropathy is decreasing. However, it is so slow, and there is not objective way to tell, that I am not going to brag about that. But it is much better than pre-MP!
The nocturnal lower leg spasms and the neuropathy are my worse symptoms, for comfort purposes.
If anyone has not read about it on another link to this forum, I HAD been taking 12,000 to 16,000 units of "vitamin" D3 per day, plus LOTS of seafood, and the fortified milk, eggs, etc, for a FULL two years pre-MP. I must have lots of 25D stored in my body fat. On August 29, '06, my 125D was 37 and my 25D, at 29.... stuck...after two years of avoiding D! It may take me a while longer than most to reach the point that I want. 
The good news is that my C-Reactive Protein (CRP) test score was LESS than 0.1. Quest Lab notified me that they even ran a repeat analysis to confirm that score. I wonder how many people can boost of that score? I usually had been around 0.6 on the test, pre-MP, but went up to 0.8 upon starting the MP. IMO, this shows that the MP can lower the irritation within our blood vessels by my getting a less than 0.1 CRP test score. I do NOT worry about my Total Cholesterol level as long as it is below the old recommended level of 260. It was once 326, but I did some things to bring it down to a more reasonable level...pre-MP. And I have a "control" to compare myself to... my DW. Our diets are almost the exact same. My carotoid arteries show "Clear, or almost clear" by ultrasonic testing. That is what interests me! DW's CRP is 9.9, and her ultrasonic test shows that she has cholesterol build up in her carotoid arteries. I am concerned! The older Mayor Richard Daley, of Chicago, died just minutes after being given a clean bill of health, from his carotoid arteries being blocked by cholesterol buildup. He had a stroke at the bottom of the building in which his doctor was located. I bet that he had a Th1 inflammation, and didn't know it. He sometimes lived in an area that might have given him at least one type of CWD form-capable bacteria.
My DW has not started the MP treatment, yet. She should, but there is something about leading horses to water. I think it applies to asses, horses' cousins, too!
DW has been dx'ed with cataracts and diabetes II within the last three weeks. Previously, her 125D tested at 53 and her ratio was 2.5. IMO, cataracts are the body's natural NoIRs to try to control the 125D from that source.
My hearing is still off. However, I was able to understand DW this evening at a distance of about four feet...without a hearing aid....something that I am not always able to do.
I do not mind given up hearing if I get my health back. However, IMO, my hearing loss is somehow connected with the herxing...toxins attacking compromised nerves.
I know that I will not win a Pulitizer Prize for this PR. But it shows that I am still alive, and chugging along with the MP treatment.
To liven things up a bit in our household, we have taken in a member of the Coton du Tulear clan. She is certainly make things more lively!!! She is young... and absolutely beautiful!!!!
Thanks! Barb!
Wishing all wellness!!!
Dark Vader.... aka, George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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GeorgeinRollaMO
Member Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
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Posted: Wed Feb 28th, 2007 03:44 |
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Well, I am in a Holding Pattern, and the controller went out for lunch or whatever. I am also in Limbo!
Ramped up to the max dosage for all Phase III abx, except for one that I still have to go from beginning.
Stopped ABX with the last on 1-1-07, and ramped the Benicar from 4-40 mg to 3-40 mg to 2-40 mg to none by 1-11-07, on account of DW challenging her cervical rotation, and pain setting in for her, while putting up wire shelves in her closet, and looking up too much. Her progression duplicated almost what transpired about three and a half years ago. The pain moved from her neck to her shoulder, down her arm to her hand. I knew that I had better not be herxing at the same time that I was needed to assist her. She was operated on 2-2-07. She is recuperating slowly, but nicely. I suspect that the bone spurs are a result of a fluctuating 125D hormone...going high, causing resorption, then dropping and causing calcium to be put back into bone, but in a spurious fashion, not orderly... bone spurs. Her first 125D test was in the fifties, then a second, in the forties.
My herxing from Oct 28, 07 to into January, varied from mild to strong. I could not see rhyme or reason why it varied, but nothing very important about any of it. Nor, was there any specific area affected. It was a general over-all type of herx. I still was subject to hormone flaring if I got too much light… had to work outside a couple of times… not fully protected…couldn’t be.
The lower leg spasms at night still plague me. The worst night was after eating about a quarter to a third of a Hersey Symphony Chocolate bar. It must be loaded with artificial flavor, or containing natural mint. But except for the night after the Hersey’s, the spasms were/are not as bad as pre-MP.
While the spasms seemed to be connected with herxing, since stopping the MP meds, I have definitely tied them with salicylates, artificial flavors, artificial colors (esp. #40 red ), and natural mint, also, that I ingest. Must be something in the way that those things are able to attack the compromised nerves.
I am glad that I took a vacation from the MP meds altogether…when I did!!! I could not have functioned very well if I had been on them. I had the book thrown at me, it seems. Almost immediately after stopping, we had an ice storm that was the biggest in most people’s memory hereabout, that knocked out our electricity for four days. I had bought an auz generator fourteen years ago, but never had even started it once. When I got the wiring all set, and started the engine, I found the gas shut-off valve was leaking gas right onto the engine. Quick shut-down, and loooonnnng looking for a new shut-off valve. I got the generator going just forty-five minutes before the electricity came back on. My three Congo African Grey parrots were asking questions about the temperature within the house. Then, it was numerous two-hour driving trips to take the DW to the neurosurgeon, hospital, etc. One hour before she checked out of the hospital, I ate a piece of carrot cake that started the rumbles in my innards as we were checking out. After the two hours drive home, I just got DW home, and in bed, when I exploded…both ends, and did not want to even think about food for the next seventy-two hours, much less have to assist the DW. We survived!!!
It seems that I have been in an airplane Holding Pattern of abx and herxing before I stopped the meds. Nothing great to complain about, nor, nothing great to rave about. Just the same thing over and over...seemingly going nowhere. It generally was not fun!!! I guess I could have gone at it in a less fashion, but I want to get rid of those Body Snatchers…whomever they are.
The hearing is still impaired! I wear a hearing aid in the right ear now. Actually, the impairment did not start April 30, of last year; it started almost twenty years ago. But my hearing seemed to quit without a hearing aid on that date. I bought the hearing aid so that I could hear the flight attendants when they came up to the control cabin to speak with me. Since the impairment has continued even into this vacation from MP meds, I no longer think it is herxing connected. I think the impairment is more like the neuropathy in my feet… CW or CWD bacteria doing something???? I am hoping that it will return to normal as I am hoping that my feet will return to normal when I arrive at the end of this "Th1 inflammation".
The vacation has pointed out to me that I get dizzy when leaning over, coming up too fast, etc, when I am on Benicar. That takes some adjustment, but is workable. I have not had any dizziness since being off the Benicar. Also, I realize that in April 2004, I thought that I would be in a wheel chair by April 2007. That is only two months away, and, I do not have that that feeling/thought today. I attribute that good to doing the MP. My bodily temperature today still is in the 98.6 range, instead of the 97.X and 96.X range of the months pre-MP. And I did a lot of shopping in the local Lowe’s Home Improvement Center recently, and I did not have to sit down every few minutes to relieve the burning sensation in my feet. It is still there, but in a much lower key than pre-MP.
I am in Limbo on account of my LLMD said that he was not going to take Medicare insurance any longer, that I would have to pay cash, and get another doc to write script for the tests that he needs to continue with me doing the MP. Seems silly to have two med docs for the one thing, so I decided to try to convince a local doc to assist me in doing the MP. As the scenario has played out, I might be able to talk my wife’s doc into assisting me. I hope!
I ‘fess to drinking 4 to 6 cups of coffee per day previously. A coffee cup is technically six ounces; tea, five ounces. I drank two to three 12 to 14 oz mugs per morning. I have not made regular Progress Reports, but I have lurked, and read of Wrotek’s (and Trevor’s) find about CGA. I wonder it that is what has kept my 25D from reducing as most folks’ have done. It was 28 back in August of last year. Maybe, in addition to all of the supplementation with D previous to learning of the MP thinking (see previous P.R.), my 25D stayed higher than I would like because of this coffee, and slowed my progression???
I am looking forward to continuing all of the rapturous delight of the MP again… soon, I hope! But without the coffee to make me feel better!
Wishing all wellness!
Dark Vader…aka, George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Wed Feb 28th, 2007 21:48 |
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George,
So good to hear from you again. Wish the news of your wife was better but I'm glad you were not "almost in" a wheelchair and could be helping her at this time.
I was just reading the list of insurances accepted that were different per doctor in my doctor's group today. Seems they hold a lot of Dr's business decisions in their small print. Hope you can find a good doctor to continue working with you on your progress.--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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