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GeorgeinRollaMO
Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 475 |
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Posted: Sat Oct 27th, 2007 22:10 |
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At last, I have something to report....INTOLERABLE herx!!! Happened to me in the evening of the 23th and during the night. I was NOT aware of it until the wee hours of the morning of the 24th, when I was attempting to sleep and was having cramps in my lower legs as often as every twenty minutes, and intensities of as much as seven on a scale of zero to ten. I then finally realized what was going on! I felt miserable...a big pile of doo-doo, lots of brain-fog, lots of eczema itching, irritable as can be, and the bad leg cramps. This was in stark contrast to either no cramps or very little in both number or intensity for about a week. I took an extra Benicar, but I am not sure that it gave me any help. This herx continued until sometime late in the evening of the 25th, though with decreasing intensity of the herx. It probably started the evening of the 22nd. I now know!!!!!!
I had been at Phase III meds previously, at full strength, last year about this time, before I had to take a vacation from the meds to be of assistance to my wife who needed a surgical operation. I did not have any where near the reaction that I did with this lesser dosage now. I wonder if my 25D has finally "unstuck" and gone below the 20 ng/ml that Trevor says is necessary to turn on the immune system!?!? It had been lowering then stuck at 23 ng/ml for quite some time. I am hoping to get in touch with my assisting med doc early next week to get script for a 25D test to test that hypothesis.
My strategy now is to lower my abx amounts, and proceed cautiously. Maybe, I have arrived, at last!
Almost all of my previous hexing has been to cause me to want to go to sleep, up until about September 8th, when some different things started to happen. That is when I broke out with eczema for the first time in my life. And on the night of October 17th, my right forearm started to ache. I wondered if my previous pinched nerve in my neck was acting up again. But after some hours of that remembered pain, it went away. Nothing was strange that could have put my head/neck out of kilter to have caused the pain. So, I am confident that the pain was herxing....caused by a source of bacteria that was either, a.) gotten there by the surgeons instruments not being sterile, b.) "grown" there after the operation of partially fusing my neck, or, c.) given to me by the cadaver bone that was inserted in between my vertebre 4 and 5, and 5 and 6, when my disc there were taken out. (A titanium plate and screws held all together until it fused together. Still in there! If you have to do this pinched-nerve operation, I would strongly suggest that you look into the feasibility of the procedure that goes in through the back instead of fusing the cervical spine.) I was assured that the bone would be sterile!!!! I guess that the med docs do not understand about how small the L-forms packaging can be, or how survivable they are.
After a fair night of the 25th, I drove my wife to and from St. Louis (105 miles one way, plus some more around town for a total of 265 miles) for an Optimist Club meeting. On the way home at night, I noticed that my light sensitivity to on-coming auto headlights was not as great/bad as previously. I had a most restful sleep last night, with no or little/very mild leg cramps, and awoke feeling good. But that good feeling is going away this afternoon with the usual lite to mod herxing setting in.... mostly wanting to go to sleep. I don't think it is a hormone flare because of the good feeling that lasted at least five hours after awakening this morning. Three years ago, that amount of night driving took me out of action all the following day, right from the geicko.
While my DW was in her meeting, I took in the "Body Worlds 3" display that is going around the States now. That is composed of the plasticized actual corpses, willed to the Dr's organization before the person died, which process was deduced by a German doctor, Gunter von Hagens. http://www.bodyworlds.com/en.html is the portal website with links to more. It is a MOST educational exhibit!!! There are three exhibits going around the States at the same time to different cities. I highly recommend seeing it!!! 
Perhaps, the most intriquing exhibits were of a normal hip and a arthritic hip. The arthritic hip appeared as though someone had put irregular stones in the hip. It had to be deformaties cause by something.... bacterial L-forms, was my immediate impression!?!?!? Another interesting exhibit was to see a non-smoker's lung (pinkish) and a smoker's lung.... BLACK from the tar. Also, to see how early an embryo starts to resemble a person.... if I remember correctly, just five weeks or six weeks!
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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arhayw
Member in Phase 3
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Posted: Sat Oct 27th, 2007 23:24 |
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Hey George--I loved the Body Worlds exhibit too! It's such a privilege to go. I enjoyed eavesdropping on the doctors who were around. They were equally impressed and excited at the opportunity to see what they normally only get to see in textbooks.
The circulatory system was my favorite!!
Cheers,
Renee
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CFS FM hypothyroid 125D56 25D99 Ph1Jun04 25D31(Jul08)25D13(Aug08) Ph2Mar05 Ph3May06 abx brk Sep06 r/t KFTs Ph1Dec06 ModPh2Jul07 Ph1Jan08 25D37(Feb08) abx brk Feb08 r/t >sxs Cytomel Calcium NoIRs occ outings covered
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GeorgeinRollaMO
Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 475 |
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Posted: Sun Oct 28th, 2007 00:53 |
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Renee,
l was happy to hear that I am not the only "oddball" to enjoy looking at the innards of people. 
It seems as though your 25D is stuck up above the 20 ng/ml mark, too. Is that correct, or has it come down?
I know a little of your world, too, having moved to here from San Juan Island. It would seem that some people are crazy, does it not? But I may never have heard of the MP until too late, if I had stayed back there. Something about what was meant to be.........?
Cheers!
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
Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
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Posted: Thu Nov 8th, 2007 03:23 |
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It sure is a great feeling to be correct!!!!!
I reported on Oct 27 that on Oct 23 that I had had an intolerable herx for the first time, that my herxing had been ho-hum until that time, that I had taken the max dosage of abx on Phase III a year earlier with no real problem, that I was taking about a half dosage just prior to the Oct date, and coasting, but then the gates broke loss, and I herxed intolerably.
My forecast was right that Trevor was right again, that my 25D had finally lowered below the barrier of 20 ng/ml, which started allowing my innate immune sytem to start to function. It had been "stuck" at a test score of 23 ng/ml for quite some time... over 6 months, at least. I reduced my abx dosage, and things have been OK.
It did have my 25D tested the following week. I just got back my result today....... 19 ng/ml.
My party is starting.... at last!!!! For a guy that supplemented with 16,000 units of D per day for close to six months prior to learning of the MP, and lots for as much as seventeen years prior, and had a 25D of 61 ng/ml to start.
Let the fun begin!!!
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
Advocate
| Joined: | Tue Aug 10th, 2004 |
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Posted: Tue Feb 12th, 2008 10:10 |
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I seem to remember that we are suppose to report anything very unusual in the way of herxing.
At last, I have something unusual to report.  Instead of all of the sleeping that I do.
I have enough pain in my left upper arm to think that a Missouri Mule landed a good kick to the arm. It started with the outside portion of my arm...the muscle that one would use to lift the arm straight out from the body and go over the top of the head, like doing the "Jumping Jacks" exercise. Then over the last three days has worked down to just below the elbow, where it is now, with some pain continuing in the original position.
I fractured my left arm rather seriously in July 1981. The fracture required a plate and five or so screws, which I had removed the following year. I had two surgeries for the combined operations, including some pints of blood for the first because of the damage to blood vessels. The radial head was shattered; the radial bone is now three-quarters of an inch shorter. The left wrist and left shoulder rotator-cup was damaged but not fractured. They both locked up after the falling accident. I expect that I received a good share of L-forms in that blood bank blood, too. And since, bacteria has now been found in prostatic devices (knees), I suspect that the metal plate and screws were not really sterile, adding to the crop of L-forms that I received.
I would have been concerned if I hadn't read of either Ival or Knochen mentioning that the one had much herxing from an old arm injury, and which lasted a good length of time. Thanks for mentioning that herxing!!!
I am at full dosage for the Phase Three meds. I finally went below the 20 pn/ml test figure for 25D around the end of September 07, so finally have an active innate immune system...and not coasting anymore. It took me over three years to get rid of all of that non-vitamin D that I had done. Hooray!!!
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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ShrnHml
Guest
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Posted: Tue Feb 12th, 2008 22:41 |
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It all sounds like good progress, George.
I, too, am feeling pain at the sites of old operations and suspect that that adhesions harbor L-forms.
Maybe people need hip and knee replacements precisely because L-form bacteria have damaged the joints. If there are L-forms on the new, prothestic joints, then these folks will be back in the same boat...........if they live that long.
The MP should keep all of us from ever needing joint replacements. .........Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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GeorgeinRollaMO
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Posted: Tue Feb 19th, 2008 00:48 |
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Almost "ditto" on my just previous post. The pain is still with me... big time with any movement of my left arm. It is not paralysed. I can move things, but that causes great pain. I am off abx. On Benicar every four hours or as close as I can remember it. Needing to take one generic of Vicidin to sleep because of the pain. Vicodin seems more empowered than without the Benicar. One puts me to sleep for a long time.
I was at full abx for three ten to twelve day cycles then shortened the long cycle to eight days. Wish now that I had not done that. Having to type with the one finger-peck method.
I'm a good example to not push, even though I was still within guidelines. I would never have expected this reaction. It is as though all of the pain of my accident was recorded somehow and is now being playback. Ouch!!!
And I thought that I was going to get away "easy". Beware if you have an accident site, too. I still have a femur site that almost gave indications of acting up, too. Getting below a 25D of 20 ng/ml has sure changed how I experience the MP....like Trevor said.
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
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Posted: Wed Feb 20th, 2008 21:29 |
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The left arm problem continues now for ten days. This would make this the longest running IP [herx] that I have had, by far. I was able to get some range-of-motion without terrible physical pain starting around supper time last night. However, I had regressed by morning time. But not totally regressed. At least, I am able to use it for lite duty to assist the other hand, but not much lifting.
I feel as though the arm is full of steel straps in the former worse injury area just below the elbow, [probably adhesions] holding everything back, and causing pain. But that is not the only area of pain. Playing 'Spider-man' with walking the fingers up the wall as a spider would walk drives the shoulder rotator-cup area wild....so I do not conceive that this pain can be a pinched nerve. And there would be no letup as there was last night. My money is still on its being a IP [herx]. It started around the eighth or ninth day of the long cycle abx, and seems now to be in 'automatic full steam ahead' drive. If I keep my arm and body very still, but move the head, there is no pain, which also eliminates a pinched nerve in the cervical region, IMO. But thinking about moving a muscle or tendon does not make me happy!!!
I am continuing to use Benicar every four hours or as close to that as I can remember. I did take 25 mg of M around 6 PM yesterday to modulate the IS, which may be the basis for the slight improvement last night. I am trying that approach again this evening. Otherwise, I am also drinking two-10 oz mugs of fairly strong coffee in the morning for the CGA to disenable the VDR some. I think that I will forego that tomorrow to see what will happen.
I do have the groggy feeling that I usually get about now with taking any M....wanting sleep feeling. And, my feet seem to be experiencing more 'numbness', too. I wonder if that can be a reaction to increased cytokines bothering the nerves!?!?!?
Getting the 25D below the 20 ng/ml test figure sure seems to turn on the innate system as predicted. My 25D was 18 at the last test. I am due for another on March 5.
Who would believe that feeling miserable means that I am going to feel better?
Wishing all wellness!!!
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: Sat Mar 15th, 2008 21:39 |
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The arm pain has subsided, but is still with me, but low grade. I am doing the P.T. exercises that I used back when I was working to get the use of the arm back after my accident/fracture. They do help.
I can definitely see a greater herxing now that my 25D test score is below the magical 20 ng/ml figure. Generally, my herxing consisted of brain fog and sleeping. I have noted when it entailed more than the usual. I also am getting some inklings that maybe I am herxing in the left upper leg from my fracture there, too. But only mild, not like the left arm herxing. I also seemed to have some mild herxing in the area of my ingural (sp?) hernia repair of forty-six years ago.
The brain fog and just lousy feeling were getting to me. Even made me not want to participate as Advocate on the CureMyTh1 site. I may do lower amounts of abx now that my 25D is below the innate immune system enabling score.
I have decided to take a few days break from the herxing/IP, and so, have passed on taking antibiotics for a few days.
The good news of these bad feeling/herxing days is that my lower leg cramps have let up somewhat. I am getting more nights without them, or just very mild ones.... I like!!!
It does seem that the neuropathy in my feet has increased. I hope that that is like the reverse of the saying, "The calm before the storm hits!" I am hoping that this is the storm before the calm hits.
Wishing all wellness!!!
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: Wed Mar 19th, 2008 23:44 |
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I flushed all of the abx that I had in my body, for a short rest from them. Felt good to be feeling good, and not have brain-fog. I started the Phase Three abx again yesterday with low amounts.
The experience of going off the abx taught me that it is not the Benicar that causes the dizziness that I have upon bending over or rising too fast. I had continued the Benicar every six hours per usual. It is most likely the kill-off of bacterial L-forms. When I started up the abx again, that dizziness returned.
I experienced mild IP (herxing) last evening, and am in moderate to strong IP this afternoon. I would not want to be working on income tax or anything else challenging right now. Its a challenge to stay awake.
No pain to speak of, except we moved a couple pieces of furniture around in the bedroom yesterday, and with the room darkened, and probably brain-fog in the early hours of the morning, I found one of the pieces with the middle toe of my right foot. I discovered later that I left a trail of blood, and my toe feels as though I might have a broken toe. Ouch! Oh! the hardship of doing the MP.  Does this qualify me for the Purple Heart of the MP????
The good news is that I received my latest 25D test results of blood drawn 3/12/08..... score of 15ng/ml. It is still going down!!! I must qualify for being the slowest in having the 25D descend, even though I continue to work on that.
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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Dr Trevor Marshall
Research Team
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Posted: Wed Mar 19th, 2008 23:52 |
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GeorgeinRollaMO
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Posted: Tue May 13th, 2008 00:30 |
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The pain in the left arm has completely gone away. I continue to do the P.T. exercises so that I can know for sure that it was a herx or not, if the pain should return. On May 4, I had some very sharp and intense pain in the left arm rotator cup of the shoulder that lasted about four "jabs" with movement of my arm.
I continue to have bad lower leg cramps every now and again. The best that I can figure is that these were connected with eating too much artificial flavors in my food on those days connected with the cramps. Otherwise, these cramps persist, but are more liveable than pre-MP. And they are none, every now and again.
On two occasions during this period of the report, I had to be on the road for five to seven hours. I was really "bushed" the next day. It felt as though it could have been "flare", but on both occasions, I did not get good or enough sleep the night before, so it is hard for me to say positively what caused the lousy feeling and need to sleep the following day.
On May 8, I forgot to take my Benicar at the midnight, morning or noon times. I felt very lousy that day!!! Then, I figured it out. I had some very important legal matters on my mind that were occupying my attention.
Twice now during this period of reporting, I have had perhaps some herxing in my bladder or prostate, I think. I have had lots of bladder urgency and cramping in that area. But it has gone away within a few hours of time.
Maybe, I will get around to introducing a different abx before the next report. The different abx is due! However, I did want to ramp up after getting the intolerable herxing, and reducing abx, after my 25D went to "enabling" my innate immune system.
It seems that I have had periods of clearer thinking that was related to taking one abx. I have given some emphasis to ramping that abx to see what that does.
Still chugging away!
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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