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DaveW
Member
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Posted: Sun Aug 22nd, 2004 22:32 |
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from Experience of DaveW ..Hello (((Good Folks))),
This is my first report since I commenced minocycline 12.5 mg/2 days on Aug 17 (after three days of benicar alone @ 120 mg/day). Today (Aug 22nd) I have ramped up to 25 mg mino.
Herx: Considerable fatigue, concentration and depression problems (sometimes debilitating in combination). Minor transient aches, pains, headaches, stomach cramps, acidy indigestion several hours after mino, sore teeth and congestion. Sometimes feel warm, with cold shivers when I move quickly.
BP is no problem - with lowest resting morning BP recorded at 88/51 with pulse 52. Normally, day time BP is closer to 115/65 pulse 60 (with fluctuations). Temp is sometimes elevated slightly.
Other changes: Herx reactions seem to be decreasing. Sleep is sometimes very good and other times very poor (Circadian rythyms and HPA axis seem dysregulated). Eyes are more sensitive to light - I must be in a dark room with computer screen darkness set to lowest level to avoid headaches (with NoIR 40% fitovers on). Having occaisionally itchy skin is a first in many years (as that and a keen sense of smell have been gone for several years). Feet are cold - especially at bedtime (unusual for me). Still feel buggy and emotionally down 2 days after mino (just before another dose).
Overall I feel more stable than pre-MP, but unsure if I will be able to work with current level of fatigue, concentration and depression problems - which were quite similar on benicar alone.
Appetite is easy to control and I am losing weight (thankfully). Have lost 8 lbs (over about 4 weeks), and hope to lose 30 more.
After years of researching my health peoblems to unveil the core root, I have great confidence in the MP (and feel it provides some key missing pieces to the puzzle). Keeping my eye on the prize will give me the courage to tolerate significant herx - as long as I can still function sufficiently to work.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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DaveW
Member
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Posted: Wed Sep 1st, 2004 07:20 |
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This is my third report since starting the protocol.
Last week, I ramped up to 32 mg of mino, and experienced terrible frequent sharp pains on my scalp, and shortly afterwards in my lower jaw. I had a bad infection for two or three years in my (impacted) wisdom teeth before I got fibromyalgia. Ever since I had these teeth extracted, I have had frequent sore tissue behind my last tooth (bottom left side), as well as frequent bad tastes and odours coming from the same location.
After the 32 mg of mino, it took four days for the jaw and head pain to stop.
I then took 16 mg mino (half the dose). It caused sore lymph nodes under my chin, a sore throat and very sore teeth (mostly left side bottom row), as well as a swollen tongue and sores on the left side of my tongue (that sometimes make it hard to talk). It has been four days since my last 16 mg dose of mino - and these symptoms are persisting and strong. I had these symptoms extremely frequently during the first couple years of my fibromyalgia.
Later. Moderators Note: These low Mino doses are no longer recommended.
Other herx symptoms include fatigue, difficulty concentrating, memory problems and depressed moods.
It is obvious to me that the mino are routing out some infection in my jaw (which does my heart good). The only problem is - if my tongue swells up too much (or becomes too sore), or if my concentration & memory becomes too disrupted, I may not be able to work.
I think I may have to take mino on fridays only - so I am debilitated only on weekends. Unless anyone has any ideas.
On the good side, my headaches have drastically decreased, and I am sleeping considerably better than before the MP.
I still have great confidence in the MP. I think it is doing what it is supposed to.
The only thing I am not sure of, is why the sore teeth, tongue, throat and lymph nodes stay so sore so long (5 days tomorrow) after the mino?
And, any ideas on how long it might take (roughly, on average) for jaw infections to clear?, as well as the cognitive, memory and depression symptoms?
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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DaveW
Member
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Posted: Sun Sep 5th, 2004 19:24 |
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Hello (((Good Folk))),
I started the MP (with quercetin from the start) Aug 14/04.
Understanding my herx responses and mino scheduling
Regarding herx responses, I had previously ramped up to 32 mg of mino (a couple weeks ago), and experienced some herx (jaw and head pains) severe enough that I had to miss a day's work.
My next dose (a week ago) was cut back to 16 mg, and that gave me a sore tongue, and sore throat/lymph nodes/teeth - severe enough that I could barely work. The first three days after this dose still threatened my work as an instructor, so I delayed my last dose until this past friday (which was 5 days after my previous dose - in an attempt to experience the worst/potentially debilitating herx on the weekend).
I have learned something from increasing the intervals between mino doses to five days. For me (personally), it takes five days (or more) for the minocycline to stop working and clear from my system. Thus my severe jaw pain herx was a result of my taking smaller doses (that I ramped up and repeated too quickly) that were building up in my system.
This means that if I take the same dose of mino every two days, the mino would keep building up, and the herx would keep getting worse and worse.
I say this because I have twice now had much longer intervals than 2 days between doses of mino, and each time my herx slowly decreases each day (but not showing major decreases in herx until at least 4 or 5 days).
Then, my last dose of mino (of 16.5 mg - enough to nearly debilitate me on my previous dose) - had virtually no herx response on this dose. I assume that this was because it was so long since the last dose, that it was not being added to mino already in my system.
I appreciate that the reduction in herx response to this latest dose may also be (in part) due to a decreasing total bacterial load, and/or simply the inconsistent and unpredictable nature of herx. I'll have to keep my eyes open to try to differentiate these potential influences.
I have also noticed, that the nature and location of my herx seems to change as the level of mino in my system declines. At higher levels, I get the jaw and scalp pain. Then after the mino declines (after a couple days), I get more sore tongue/teeth/throat/lymph symptoms. Then as these symptoms decline, I get more symptoms of swollen skin on the soles of my feet (angioedema), and the transient aches and pains all over, and perhaps more cognitive/mood problems. Strange.
Is there any significance to the extra long length of time it takes for mino to stop working in my system? Does it say anything in particular about my system, or result in any particular specialized advice I should follow?
Re Quercetin: I have been taking 235 to 470 mg quercetin with each (8 to 6 hr) 40 mg dose of benicar. This quercetin (Natural Factors) product also has 235 mg of other bioflavaniods, as well as 40 mg of rutin and 40 mg bromelain. It was the closest I could get to pure quercetin where I live in Canada. It seemed to help, but it did not seem to work as well as the pure (Nature's life) quercetin I just rec'd from the U.S. two days ago. I am feeling especially good right now, and I am not exactly sure what part the change in quercetin is playing in this improvement, so I will report on the difference in the products again in my next post.
How am I doing now?
I have had a few nights of sleep that is approaching normal - and is just wonderful for me! I can't remember how long it has been since I slept this way. Non- fibro/CFS (or autoimmune) folks may not understand this, but I am actually starting to feel tired some nights! Before, I never felt tired (so sleep never came easy), even though I was always extremely exhausted - even just after waking.
In addition to feeling tired, the bed actually feels good sometimes! My muscles seem to be somewhat more relaxed now, which permits me to actually enjoy the feeling of the bed (both before sleep and upon waking). It has been years since I have experienced this. As the muscles relax, the achiness and soreness also seems to be declining slightly. My muscles are still not near normal yet, so I can only imagine the potential improvements that still await me. <big grin>
Yesterday I went for a car journey that took 6 hours (round trip). This would have destroyed me before. I also ate a bunch of food (that included sugar) that also would have destroyed me before. Then I fell asleep in an easy chair before going to bed last night. That may not sound like much, but before the MP - falling asleep in the easy chair before going to bed would have guaranteed my next day to be a write off.
Today I feel the effects of yesterday's combination of sins, but I still feel better than I did on a good day (before I started the MP).
This significant recent improvements I am reporting might just be a temporary wave between flares - but I love it (and it has filled me with anticipation of having a life again!). Whenever I dare to grasp this hope, it can bring me to tears (of joy) <------ something else I have not experienced in a lot of years!
My cognitive and mood problems may also be slightly better this week, but continue to be a problem. One step at a time.
I hope everyone here has a great week!
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Sun Sep 5th, 2004 21:55 |
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Hi Dave!!! 
good observing there!!! thanks for sharing so we may all gain
and I'm pleased to see you are gaining ground!! YAY!!! (and that with the going slower)
re the Quercetin... TM said no bromelain 
Thanks for the GoodNews and wishing you all the Best. Barb xx
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Reenie
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Posted: Mon Sep 6th, 2004 01:21 |
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DaveW says, "I have learned something from increasing the intervals between mino doses to five days. For me (personally), it takes five days (or more) for the minocycline to stop working and clear from my system."
Dr M says, "Mino clears the body quickly (within 48 hours)."
http://www.marshallprotocol.com/forum23/626.html
Dr M says, "Once your immune system starts killing the bugs it usually keeps right on doing that."
http://www.marshallprotocol.com/forum23/627.html
Dave,
According to Dr M, the mino starts the herx, then once this begins, your immune system keeps working for a few more days. This doesn't change how you would handle it, since you would still want to wait until the herxing stops before adding more mino. 
"Yesterday I went for a car journey that took 6 hours (round trip)"
I would wonder how this affected your 1,25-D levels.  If you drive your D too high, you may feel better, and not be able to herx until it comes back down. It's just a thought and something to watch for while titrating mino. When you get your test results back, this will help assess that.
Dr M says, "I suspect that your D level (or something) was initially a bit too high to allow the antibiotic to work properly and that the antibiotic just kicked in, bigtime."
http://www.marshallprotocol.com/forum23/627.html
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paulscha
Banned
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Posted: Mon Sep 6th, 2004 02:27 |
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Hi Dave,
Just wanted to complement you on EXCELLENT reporting.
This was so clear and easy to follow, the questions very apt as well.
I'm fascinated by that shift in your symptoms that seems to follow the mino dosage. (Of course, I wish you could get well overnight with no symptoms at all)
Cheers,
Paul
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DaveW
Member
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Posted: Sun Sep 12th, 2004 18:10 |
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Update:
I was out driving in a vehicle for three days last weekend (with Noir glasses and long sleeved shirts). I have been struggling with depression, cognitive problems, exhaustion and generally feeling poorly ever since. (I only have Noir 40% glasses so far. The darker shades are on their way in the mail). Would this be enough to derail me and cause such symptoms (for a week?).
I get the feeling I already know the answer (but just don't want to accept it). I was outside for about three hours again yesterday (with the same protection), and today I am feeling the same symptoms.
I am now taking mino only once a week on Fridays, as it seems to take this long to overcome the herx of a dose, and I am trying to keep working (which is a struggle for me now - even without herx).
Last Friday I took 25 mg mino (up from 16.5mg), and experienced sore teeth, sore throat, and some soreness on the soles of my feet (angioedema), but nothing too severe. The depression, exhaustion and cognitive problems are still quite severe, but they have been all week, so I do not assume this to be herx from the mino.
However, I also took 840 mg (3 capsules) of activated charcoal at 8:00 pm on Friday - midway between benicar doses (and 8 hours after the mino dose).
At 7:00 am Saturday morning - I awakened with the urge to use the washroom, and suspect I totally emptied my bowel over a 20 minute period, with a consistency of coloured water.
I have had two similar experiences in the last ten years, except that both other times the experience was acompanied by severe cramping. Both of these previous experiences resulted in a week's hospitalization, as anything ingested (even water)was passed thru my system within 15 or 20 mins (with extreme cramping), with the bowel maintaining this response for a week. The more recent of the past two experiences (two years ago), was also accompanied by the passing of a significant amount of blood.
The doctors had some disagreement on whether this was crohns or IBS. I suspect it was IBS - since symptoms are so intermittant, and the bowel shows no residual damage. Normally, I simply have bloating and delayed motility (which I have interpreted to be the constipated form of IBS).
My experience Friday morning was the same quick emptying - but no cramps, and my lunch meal was normal with no further problems.
I am not sure if this was herx, or perhaps the charcoal? I am very new to using charcoal. Can it do this?
My blood tests showed an inflamed liver and stressed kidneys. I can even feel this stress on the two sides of my lower back (kidney areas), with occaisional low level achiness that appears to be in the kidney areas.
I was hoping that the charcoal might help clear some of the toxins (relieving some of the pressure from my kidneys and liver). I was also hoping it may make the herx (particularly the depression) more tolerable, as another member had warmly shared that it had been quite useful in reducing depression for them.
Thank-you (((Good Folks))) for any insights, suggestions or advice that any of you may have to share.
This is not very pleasant right now, but I still have great confidence in this path.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Reenie
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Posted: Sun Sep 12th, 2004 22:19 |
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"I have been struggling with depression, cognitive problems, exhaustion and generally feeling poorly ever since. (I only have Noir 40% glasses so far. The darker shades are on their way in the mail). Would this be enough to derail me and cause such symptoms (for a week?)."'
Hi Dave,
Sorry you've been having such a hard week. For myself, I'm certain the amount of sun exposure you've had, would cause this for me.  I can't/don't leave my cave for days at a time. I don't know how some ppl manage that get sun exposure. I know some are more sensitive than others, but the good news is... the sensitivity improves after awhile.
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Aussie Barb
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Posted: Sun Sep 12th, 2004 23:54 |
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Hi Dave
- yes I agree that the sun exposure (+ the effort involved) is enough to bring on the depression etc.
- you didn't say if there was any lifting of depressive sx after the charcoal *action* we shall call it ?????
- and were there any untoward effects apart from the evacuation???
 and apart from your natural fear based on past history..
Best wishes, Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Mon Sep 13th, 2004 04:48 |
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Thank you Reenie and Barb!
Regarding Barb's question: There may have been a slight temporary lifting of the depression from the charcoal Barb, but I'm not sure. I do plan to keep trying it, but this time with lower quantities. Over time, I will probably get a better idea of its effects on depression.
Is charcoal something a person can take safely on a regular basis, or could it block the absorption of some nutrients?
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Mon Sep 13th, 2004 07:21 |
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Dave
Charcoal absorbs poisons. When I need it, I can feel the need (misery torment depression) about 3 hourly....... and I take it away from meds.
My pharmacist told me that some ppl use it monthly as a cleanser....
I haven't ever needed to take it every 3 hours for more than a day or at most 2, cos once it does the job, and I have relief I forget about it.......... and I mean forget..... it usually takes me a bit of misery before I remember to grab for it again next time.... grrr
I might add that it does not have the evacuation effect on me. Barb x
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Reenie
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Posted: Mon Sep 13th, 2004 17:33 |
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DaveW says, "Over time, I will probably get a better idea of its effects on depression."
The bottle I have says, "Activated Charcoal is one of the most finest absorbent agents. Each particle contains many small chambers and cavities that "capture" or bind-up unwanted materials and gas, which are safely carried out of the digestive system.
"Recommendations: Take 2 caps after eating, as needed. Repeat after two hours if discomfort persists.
"Note: The high absorbency of charcoal may reduce the effectiveness of certain meds. Consult a physician before taking this product with other meds."
Dave,
Have you considered increasing Quercetin to see if that helps? I know Q is supposed to help with fatigue and brain fog. IMO, Q sounds like it may help w/depression sx, more than Charcoal. It's just a thought. Last edited on Mon Sep 13th, 2004 17:34 by Reenie
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DaveW
Member
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Posted: Sun Sep 19th, 2004 19:15 |
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Time for my weekly update.
To understand the update in perspective:
Started MP Aug 14/04. My summarized major herx responses have been as follows:
- Adjustment to benicar and intial herx included tiredness, depression and brain fog - fairly constant since beginning, and sometimes quite severe.
- Ramped up too quickly and dosed too often - resulting in some stabbing pain in my jaw and on my head.
- I have also experinced sore throats, sore teeth, sore tongue, swollen lymph nodes under chin, and mild angioedema (swelling) on the soles of my feet (all familiar symptoms from my early years with the disease).
- I reduced doses to once a week, as it seems to take that long to reduce the herx from each dose. More frequent dosing resulted in more (too) severe herx.
- Experienced one rapid and severe bowel evacuation (without any cramping!?!?), which I suspect to be herx.
This week's report
This week was relatively uneventful for herx (but I can do without the dramatic herx very nicely thank you). I repeated the 25 mg dosage of mino (taken on Fridays) for the third time.
I have noticed considerable improvement in my sleep, with the circadian rythms finally permitting me to sleep earlier, and that wonderful experience of actually feeling tired, looking forward to sleep and having the bed feel good (as opposed to always being exhausted without the ability to relax - with sleep always being difficult and light). I am so thankful for this improvement alone.
My depression has declined this week, and does not have the near debilitating severity I experienced in the last and previous weeks. I sure hope this continues.
In addition, the fatigue that was so pervasive in my first few weeks seems to finally be declining some. I noticed several times that I walked some distance (a block or so) at a good normal speed - without feeling exhausted or having to slow down.
Note that these improvements are so gradual that I may not even notice them as they are occurring. The severity of symptoms also tends to fluctuate in waves, making it more difficult to recognize overall improvements. When herx gets bad, it can feel like you are worse than ever (and make you feel that there is no hope for you). I find that I often have to look back over a few weeks to appreciate the improvements I have experienced.
That being said, I also just realized that my near constant headaches are quite infrequent (and less severe) for me now. I attribute this improvement to the NoIR's. I am also generally more stable now - not having to contantly live in fear of how I might feel three hours from now.
I am still sufferring from significant cognitive and memory problems, and can sometimes become noticeably anxious (for no apparent reason - which I suspect to be herx).
I still have virtually all of my fibro symptoms, but the humble improvements are very inspiring. My symptoms have been slowly growing progressively worse for 18 years, so seeing this trend reverse itself (even in humble ways) is very exciting!
This week, I also caught a cold that is going around here, but I think the benicar may actually be reducing the severity of the symptoms! Hard to say how the cold may be affecting my other experiences this week.
So ends my (typically long winded) weekly report. All the best to all you fellow MP'ers!
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Sun Sep 19th, 2004 21:13 |
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Great overall Summary Dave very helpful to have the full perspective. Thanks
& I'm pleased you were able to work out what worked best for you re taking the Mino & working all good.
Best as always, Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Sun Sep 26th, 2004 16:06 |
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Relatively minor changes since last week's report:
- Ramped up mino from 25 to 33 mg this week
- Experiencing significant depression once again (along with increased brain fog)
- Sore teeth (lower left jaw)
- Increased muscle stiffness and pain - particularly in the neck and chest (right side)
- Increased incidence of sharp transient pains (in toes, fingers, or elsewhere)
- Appetite seems to have increased
- Bowels seem to be normalizing (after years of chronic constipation)
- Sleep remains quite good.
The Plan
I have been taking my dosages of mino only once a week (on Fridays), so the major herx occurs on weekends - to protect my work (teaching) from debilitating herx reactions.
This week, I ramped up to 33 mg on Friday, but if the herx has declined significantly by Tuesday, I will then take a (smaller) dose of 25 mg. This should keep herx tolerable through the week, while still maintaining some progress against the bugs. I will then take my (larger) 33 mg again next Friday.
I have never seen anyone plan to alternate mino dosages in other posts. I hope there is no reason why this would be a problem.
I have decided to try this, as I doubt that my once per week doses will get me to 100 mg of mino within 3 mths. I am now at 6 weeks, and have just managed to ramp up to 33 mg.
I can see that if a person did not have a thorough understanding of the MP (along with the faith that comes with such understanding), they would not have the determination required to carry them through the difficult times. It would be so tempting and all too easy to interpret the adjustment struggles and herx as meaning the protocol is "not right for them". It takes faith, patience and perseverance to keep feeling thankful for feeling rotten!
- Keepin my eye on the prize, and hangin in there!
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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carol
Advocate
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Posted: Sun Sep 26th, 2004 17:10 |
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DaveW wrote: I can see that if a person did not have a thorough understanding of the MP (along with the faith that comes with such understanding), they would not have the determination required to carry them through the difficult times. It would be so tempting and all too easy to interpret the adjustment struggles and herx as meaning the protocol is "not right for them". It takes faith, patience and perseverance to keep feeling thankful for feeling rotten!
Dave:
This is well said. It was easy for me to get there intellectually with respect to the MP, but the emotional struggle that accompanies the physical struggle too often trumps the head stuff.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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DaveW
Member
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Posted: Sun Sep 26th, 2004 20:08 |
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I hear you Carol! When they get bad, the depression (mood) problems and cognitive difficulties are the most debilitating for me as well. When the depression gets bad, it is almost impossible to retain hope, as a core characteristic of depression is "feelings of hopelessness".
I have come to believe that people who have not experienced significant prolonged depression are simply not capable of fully understanding the extent to which depressed people have no choice in their feelings. If they had choice (like everyone else), depression would not be a disease.
I also suspect that the people who have learned to live with depression (that is not too severe or consistent), have learned to cope by not trusting those feelings - even though they seem every bit as real as any other feeling they have.
I try to remember that because herx inflammation can make me feel very depressed - that likely means that the depression is a symptom that will abate when the bacteria/inflammation are finally harnessed. That thought can always bring a little smile, so I clutch onto this little piece of reason to help me through the tough times.
(P.S. Being obsessively stubborn may help a little too - but of course I'd never admit to that!)
(((Carol)))
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Sun Sep 26th, 2004 21:36 |
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All well said and done xxxx (((Carol & Dave)))
re >>I also suspect that the people who have learned to live with depression (that is not too severe or consistent), have learned to cope by not trusting those feelings - even though they seem every bit as real as any other feeling they have.<<
I agree.. it sometimes takes me a little while to recognise the visiting thoughts as frauds... brain fog.... but then I do
& I say to MySelf. "these thoughts are not real, they are not true... this is the sickness talking"
Depression is a very nasty sickness.
Best, Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Sun Oct 3rd, 2004 16:53 |
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Weekly Update:
I followed through with my plan to take 20 mg of mino on Tuesday, and 33 mg on Friday (so I would not experience debilitating herx on weekdays).
This worked as planned - with no debilitating herx, or profound improvements to report this week.
Some minor changes I did notice
I have noticed that the high level of depression I was experiencing has seemed to decline this week. However, my cognitive and memory symptoms have not improved. I find myself typing characters backwards or sometimes missing letters in words - requiring me to do a lot of editing. I have noticed this for several months (long before I started the MP). This is one symptom the MP has not yet touched. I hope that it eventually succumbs.
I also find that important things can slip my mind even just a few seconds after I think about them. This causes significant difficulties. I am also hoping (and praying) that this symptom will also eventually succumb to the MP. Anyone have any experience with the improvement of these symptoms?
Understanding the MP in terms of my experience (Personal Speculation)
My sleep this week was not as good as the previous week. I am tentatively attributing this to my cutting down slightly on my benicar dosage (due to a supply problem), and also because I took the extra dose of mino in mid week - both of which would act to increase inflammation levels from what I had experienced in the previous week.
Even thinking back to pre-MP experience, it seems that when inflammation levels were up (as evidenced by other symptoms) that I had the greatest problem with sleep. This is leading me to the assumption that there is a direct correlation between daily fluctuating inflammation levels and sleep quality.
This direct relationship does not rule out that the inflammation may also affect sleep quality through other chronic chemical and hormone (HPA axis) dysregulation. I suspect the adrenals to be particularly implicated in (at least my) sleeping problems. I would love to see a study of adrenal output vs sleep quality.
I suspect the long term decline in sleep quality that we experience as Th1 disease progresses is likely due to the dysregulating effects of chronic inflammation on the HPA axis. Such dysregulation changes slowly.
Whereas, the fluctuations we experience in sleep quality from one night or week to the next, are likely due to the current levels of inflammation we are experiencing. For me, the MP has made these fluctuations much greater and more evident.
Just some thoughts to share.
All the best,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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DaveW
Member
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Posted: Sun Oct 10th, 2004 16:53 |
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Weekly Update
I noticed a few small improvements earlier this week.
I caught myself stretching once. There has been no urge to stretch for years (I suspect because I am too stiff and sore). I did not think about it - I just all of a sudden noticed I was stretching!
I also started singing while I was working in the kitchen one day. This is something else that just happenned spontaneously - that I also have not had the urge to do for a long long time.
These experiences are not the overcoming of major symptoms - but I do think they are indicative of progress. I am starting to understand that my improvements on the MP are subtle and insidious. This is exactly how my disease progression went. Each day seemed the same as the last, but over time my symptoms got worse in imperceptible incremements. Now the improvements are happenning the same way.
I am still struggling with a lot of mental confusion/memory problems and sure hope this will pass.
An unusual occurence this week
This week, my supply of benicar ran out. I have more on the way, but am having to go without benicar for a time.
Being in Canada, I decided to try making a temporary substitution of diovan (another ARB). I just started the diovan yesterday, but so far I must report that I very much don't like it. I tried 80 mg every 8 hours (with quercetin), but the experience of the drug was such that I could not bring myself to take the third dose. I took 20 mg of benicar (I had left) as a substitute for my third (bedtime) dose.
I have a degree of dizziness. My head almost feels under pressure, and my ears ring more often. Sometimes, other people's voices even sound echoey (sp?). With these experiences, I feel somewhat spaced out. There, but not there. I am also more lethargic. The lethargy is not unlike when I first started/adjusted to benicar.
I have been monitoring my blood pressure, and the diovan seems to take it down lower than the benicar did (by about 8 to 10 points), but it still seems to remain in the 90's over 50's.
I must say, my muscles seem slightly less sore - but I also seem to be experiencing less herx from the antibiotic on the diovan than I did on the benicar. I am wondering if it may be possible that I am experiencing different herx?
My lower jaw pain/soreness is virtually gone, but the lower back of my head, neck and shoulder muscles get very stiff if I sit still for awhile. This is in contrast to the benicar. I also seem to have a slight or threatening headache on the diovan, which was not there on the benicar.
I also do not feel as stable on this drug. I am feeling quite apprehensive or fearful of the potential side effects. Last night I felt unsure of my ability to drive my car - which has not happenned to me before. I realize that these experiences could be explained in part as being adjustment - combined with psychological fears of the unknown.
I have cut back the dosage some, and if the adjustment to no ARB is not too great, I may just stop the MP until my supply of benicar arrives. On the other hand, if I seem to adjust to the diovan, I may continue with it as a temporary substitute. If I continue on the drug, I will report on it again after there has been time for adjustment.
For the moment, it seems very clear to me why it was rated as a distant second to benicar.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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