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Dody
Member in Phase 2
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Posted: Sat Mar 24th, 2007 17:03 |
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3/17/07 Benicar 40Q6 3/24/07 Mino 25QOD
Other threads in General questions & Benicar only
Well after posting yesterday that I was going to wait another week to start the mino, I started it 30 minutes ago. (I got my gelcaps to split the dose, received my D-test interpretation back from Lottie--thanks so much for your prompt reply--and realized that this coming week is a much lighter week at work than the one following.) So let's begin learning how this all works for me.
Nothing to report yet except that I'm finally in Phase I for real.
Thanks to all, Dody
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Lyme arrhythmia Lithium Valium Tylenol Calcium NoIRs zinc oxide mod low lux home mod lite exp cover up Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08 18 Sept08
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Dody
Member in Phase 2
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Posted: Sun Mar 25th, 2007 14:42 |
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3/17/07 Benicar 40Q6 3/24/07 Mino 25QOD
Hi all,
I'm feeling pretty good this morning. Comfy enjoying a quiet Sunday on the couch. Weekends are almost totally rest time as I am fortunate to be able to work Mon-Fri, as close to full-time as I'm able to.
Last night, about 10 hours after my first mino, I had a lot of trouble getting to sleep. Keyed-up (unusual for me), nauseous, extra achey, and had a totally new, weird kind of pain in my feet and ankles. I was also extra brain-foggy. So I think I'm doing some nice IP.
My partner and I had hoped to do a 2-hour errand today, hoping for a gray morning, but instead we had snow overnight and it's hopelessly bright out. I'd even planned to take Beth out for breakfast (after eating some of mine at home. I would have brought an AkMak cracker with me and ordered two of the neighborhood breakfast spot's freshly separated eggwhites scrambled.)
But wild horses wouldn't get me outside today. I sure hope the snow melts by tomorrow morning's 10-minute commute to work.
This year's gardening--if any--will have to be done in very short early-evening or early-morning spurts. Or rainy days. Once, in my healthy days, I transplanted a lot of stuff in the rain, on my knees in the mud. I must remember that the plants loved those conditions--no transplanting shock.
Before my next required evening meeting--Planning Board--in a week and a half, I hope to have some understanding of my IP ebbs and flows. Hopefully I can time my worst IPs to avoid that meeting. This past week I had to be awake and functioning, with my part of the meeting being from 8 to 9 PM--a time when I'm usually resting on the couch thinking about getting into bed.
I functioned through the meeting, but next morning I was totally beat, and used a couple of hours of sick time. There was no way I was going anywhere without some extra sleep.
At work I wear hats that shade my eyes (plus my NoIRs of course). The hats I have work fine, but I take terrible ribbing from my somewhat insensitive co-workers.
I work at Town Hall in a small town on Cape Cod, for the Town Planner and Engineering Dept. I have a semi-private desk for my technical work on the computer with GIS--geographic info--and reviewing paper plans submitted for development projects. But I do a lot of face-to-face customer service at "the window." My color perception is of course skewed by the NoIRs, so probably the clothes I choose are less pleasing than if I could perceive yellow better.
And then the hats! I created a black crushed-crepe head covering, lined with black flannel, with a little brim stiffened by a sliver of a plastic gallon milk container. I wore this daily for my first weeks back at work after my several-week absence. Then, tiring of wearing black every day, and craving still more shade, I bought three perky pastel baseball caps for $2 apiece online. They too are functional, but bring still more teasing.
Obviously, the answer is to be thick-skinned about the teasing.
But I do want to try to look professional and appropriate--on my usual very low budget. MP women who work: Any suggestions? I've gotten the lighting at my desk pared down very nicely, but all the other spaces I have to spend time in are brightly lit--the way I used to like them before I got sick. 
Healing wishes to all,
Dody
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Lyme arrhythmia Lithium Valium Tylenol Calcium NoIRs zinc oxide mod low lux home mod lite exp cover up Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08 18 Sept08
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jrfoutin
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Posted: Sun Mar 25th, 2007 15:09 |
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Dody,
I used to teach fashion and even cared about that, but now I just stick with MP-friendly concepts. Staying alive somehow takes precedence (wink). I like your idea to wear a thick skin, though, as that is likely the most chic thing to wear at any time when you must do what it takes to get well. Nice work!
One idea that may help is to chart when you notice your peak responses following Mino dose. If you work, you will want to pick a time to dose that is compatible with your sleep and work, and when you can deal with immunopathologic response best.
You are right, working folks tend to plan maximum rest time over the weekends, snow or no snow. Bright or dark.
Best to you Dody--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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Dody
Member in Phase 2
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Posted: Wed Mar 28th, 2007 00:12 |
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3/17/07 Benicar 40Q6 3/24/07 Mino 25QOD Probiotics Lithium
Hi all,
I’m four days into Phase I. I've re-visited a number of unpleasant sensations experienced earlier in my life, and discovered new ones. The great thing is, they don't last very long.
Herxing, herxing, oh what will be the next thing… (I'll spare you the tune to the jingle.)
My blood pressure which is usually low (avg 110/60) has not dropped any lower.
I have experienced a lot of light-headedness. Today, between 20 and 24 hours after my last Mino, I became dizzy several times, to the point of darkness starting to close in, upon standing. I obeyed and re-sat, and was able to get up again, even slower, after a few seconds. So I’m learning to change positions ever more slowly.
(Since the onset of my illness several months ago, I’ve had some balance problems and occasional room-spinning vertigo. That taught me always to be in reach of something to grab, and never ever to multi-task when negotiating stairs. Never button a coat or put on gloves while walking downstairs. Fortunately there's an elevator at work for going back up, and the stairs at home are only 6 stairs max.)
I intermittently become winded from fairly small exertions.
There’s a funny, noisy wheeze, not accompanied by difficulty breathing.
There’s an endless variety of small pains that come and go—teeth (upper right quadrant), face (around right orbit), headache, a weird pain in my feet and ankles that is not my usual pain of foot or lower-leg cramps. Etc.
The herx I really hate is the muscle-ache one. I never knew where my flanks even were until they started herxing—the mysterious “flank pain” on the printable charts.. Upper back, middle back, lower back, flank—they come and go as they will.
Eye aches, dry eye, a nose sore, an odd dry cough, a very dry nose followed by a prolifically runny nose. Intensified heat-regulation problems.
It’s early for trying to understand the cycle, but so far it does seem that the onset of unpleasant nausea, achiness and “edginess” comes about 10 hours after I take the Mino. So I’m trying to time it so that this comes when I’m already asleep. It generally wakes me, but so far I’ve been able to get back to sleep.
A second strong escalation of achiness seems to come near the end of the 48 hours.
Splitting the Benicar doses and taking them twice as frequently helps when herxing’s unpleasant (and when I’m sure I will remember to take the extra dose!) I have also taken an extra 20, and it usually works.
All of this is so very worth the goal of a real cure. Whenever I am tempted to feel sorry for myself, I remind myself of the alternative—continuing degeneration. Compared to that, all of these trickster responses are relatively easy to face.
From reading a lot on the site, I was well prepared for a bumpy ride. Thanks so much to all who post and monitor. 
Healing wishes to all,
Dody
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Aussie Barb
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Posted: Wed Mar 28th, 2007 00:49 |
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Thank you Dody
Good that you are taking care and adjusting meds as required..
Phase One is the training ground for you to get the feel of your immune response - Immunopathology / symptoms and to gain personal experience in managing all aspects of MP. ie eg including your meds, and light exposure and D avoidance. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
: make sure of adequate rest, relaxation, and hydration etc.. Tools to check:
Rest is a very important part of managing and healing.. By being pushed to the limit of the tolerable immune response our body is working to capacity.
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dody
Member in Phase 2
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Posted: Wed Mar 28th, 2007 21:19 |
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Thanks Barb.
Dody
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Lyme arrhythmia Lithium Valium Tylenol Calcium NoIRs zinc oxide mod low lux home mod lite exp cover up Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08 18 Sept08
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Dody
Member in Phase 2
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Posted: Sun Apr 1st, 2007 18:27 |
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3/17/07 Benicar 40Q6 3/24/07 Mino 25QOD Lithium 600 QWk
Hi again,
I have a few questions about managing blood-pressure and dizziness.
My pre-MP blood pressure was fairly low (110/60 avg, 90/50 not uncommon). During my acute illness in October-December 2006, I experienced a few episodes of tachycardia both in the hospital and at home.
Over the past couple years I have also had several spells of arrhthmia, usually in the morning, which were probably benign but which stopped me from continuing my routine till they resolved in minutes or at most hours.
I did not expect blood-pressure problems on the MP, having read a lot of the threads on blood pressure and Benicar's minimal effects on it.
My week on Benicar-only actually saw an initial increase in my BP, to 135/85. It then settled down to my pre-Benicar range. My avg pulse rate rose just a tiny bit, to 62, vs. 60 pre-Benicar.
On my first week of Mino 25 QOD, I've had several episodes of faintness and dyspnea that have become more intense. Each of the past three days I've had more than one episode where I've started to black out. Several of these times I've been near a monitor, BP has been as low as 79/47. Each time I have promptly drunk 1/3-1/2 litre of water, and felt better soon after, and when near a monitor have seen my BP rise to my normal or near-normal.
I have been drinking a lot of water on the MP. Pre-MP I drank a lot of water, but since on it have been trying always to have a couple bottles of water handy. So I don't think I should have been dehydrated before these episodes. But it seems clear that still more water has brought my pressure up and enabled me to get up off the floor/stair/whatever and function again.
My doctor advised me to minimize my salt intake on the MP. He's a nephrologist and has other patients on the MP. I have been eating fairly low-salt since my inpatient stay on the cardiac floor in October 06.
Today (due to take Mino in an hour, so 42-47 hours post Mino), I have not really bounced back. My BP and pulse are ok, but I'm remaining light-headed, short of breath, and the BP monitor gave me several readings that insisted I was having arrhythmias.
Of course, yesterday is the first day that after resting all Saturday during daylight, I did venture to the beach in the moonlight. I mostly sat on a rock after a very short walk to get to the rock. It wasn't a huge exertion, but there's a fairly steep though short climb back up from the beach to the car. (I didn't even do the driving.) But today may be payback for the effort it took to experience a welcome change of scene and sound.
Question 1: I wonder if my low salt intake is serving me well.
Question 2: Some but not all of my dizzy spells have come when I'm due or near due to take my next 20 mg of Benicar. I've been waiting a few minutes, till I've stabilized again, to take it. Should I instead take it right away? (Might it help?)
Question 3: Do you have any other thoughts on ways I can best manage this stuff while it lasts? (I know, I know, drop before I fall; I'm doing that.)
(Question 4: At the insistence of my partner, she wants to know, if I ever have a heart attack, what about epinephrine? I am blessed that although I know she's fearful, she's totally supportive about my doing the MP because, as she says, it's way better than the alternative.)
Thanks, as always,
Dody
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Dody
Member in Phase 2
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Posted: Sun Apr 1st, 2007 19:38 |
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Well I solved my question about salt on my own. Re-read the thread on dizziness, and finally decided for myself the doc is wrong, nephrologist or not, and i've started salting everything and already feel somewhat better. The increasing severity of my dizziness must have been at least in part due to decreasing sodium levels.
Dody
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Aussie Barb
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Posted: Sun Apr 1st, 2007 20:14 |
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Thank you Dody
for future reference and for others reading: Why am I dizzy and/or fainting? to discuss with your Dr. Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
: Lay low, stay in bed, drink adequate fluids, eat salty foods and wait for the symptoms to wane. Tools to check:
re Question 4: When should I be concerned about cardiac symptoms?
If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
see information re What do I need to know about epinephrine?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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jrfoutin
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Posted: Sun Apr 1st, 2007 20:18 |
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Dody,
I particularly enjoyed Greg Blaney's comparison of hydrating and ingesting salt to be a lot less trouble than checking into a hospital for an IV of salt water.
It was also very heartening in your post, that you read the information on this site. Good for you!
Keep reading!--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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P.Bear R.N.
Research Team
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Posted: Sun Apr 1st, 2007 22:07 |
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| Dody, Since your nephrologist knows your kidney and medical condition be sure to let him/her know about your decision to try the salt; since there may be a very specific reason you were told to avoid it and it is best to work with them to make sure you are followed properly. That way if there are alterations in your status they can better understand what is going on. best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Dody
Member in Phase 2
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Posted: Mon Apr 2nd, 2007 22:40 |
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Thank you Barb, Janet and PBear 
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jrfoutin
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Posted: Tue Apr 3rd, 2007 00:36 |
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Dody,
Potassium/salts may not be a great idea with one of your non-MP support meds, and this should be monitored carefully. Sometimes I don't see the sig lines initially.
PBear is correct.--Janet
____________________
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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Dody
Member in Phase 2
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Posted: Sat Apr 14th, 2007 19:29 |
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3/17/07 Benicar 40Q6 3/24/07 Mino 25QOD Lithium 600mgQweek
Other threads in General Questions & Benicar-Only forums
Well, I've been on Phase 1 for 3 weeks today. It's been a ride. I'm glad I'd read and thought about it for a long time before I started. I totally know that this is the only way I am going to rid my body of the Lyme bugs and whatever else I may have been carrying for so long--possibly for the 59 years since I had bacterial meningitis when I was 3! That makes the ups and downs worthwhile.
Some of the ups and downs are getting familiar and somewhat predictable. Though it's a lot like raising a baby--just when I start thinking I understand the routine, it changes again!
The scariest thing so far was 1/2 hour yesterday morning when I got vision disturbances in the form of moving flashing lights in my left eye. I knew it was probably a herx, and especially after it stopped I'm pretty sure that's the case. But I knew that that symptom could also warn of a detaching retina. So meanwhile I did call my MP doctor's office. My doc of course suggested follow-up for either retina or optical migraine. I am inclined to wait and watch. I already know my eyes are full of Lyme infection.
My last ophthalmologist is no longer in practice in MA. No one has looked at my eyes since several years ago when I was declared no longer a glaucoma risk. But a trusted friend did recommend a local retina specialist. So I may make an appointment.
In hindsight I would have seen an ophthalmologist BEFORE I started the MP! But the Lyme alone had me in NoIRs and covering my head for months before I started the MP. I dread the bright lights of an eye exam, plus the drops to dilate the eyes. My friend says they can now reverse the effect of the dilation drops after the exam. That's some comfort.
Overall, my immune system kicked in as soon as I started the Benicar. And especially with the help of Minocycline, I sure know I'm killing bugs. All kinds of weird aches, increased fatigue and joint pain, shortness of breath, achey eyes, night sweats, cold hands and feet (today just on the right side), swollen glands and other flu-like symptoms, anxiety at night, anxious dreams and disturbed sleep, dyslexia and general brain fog.
Each time I think I've gotten about all the mileage I can get from the 25 mg, something else comes along. So I'm just going very slowly and patiently. When I hit a lull that lasts a whole day or two, I'll be ready to ramp up to 50.
And I am truly fortunate that my MP doc's office fought for payment of my Benicar and won.
I did contact my MP doc about my addition of a small amount of salt to my diet, and he's ok with it. I haven't had ultra-low BP since adding the salt, except when I forget. So I'm managing the dizziness ok.
My profound thanks to all of you who have encouraged me and answered my questions.
Best to all, Dody
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Aussie Barb
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Posted: Sat Apr 14th, 2007 20:06 |
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Thank you Dody
Will the immune response cause increased eye inflammation? It is important to visit a health-professional when you need advice about your eyes. << Adequate eye protection will be particularly important for anyone with eye inflammation.
To assist with any light exposure, or during eye exam: If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
see also EYE INFLAMMATION and Th1 diseases re eye exams etc..
Lithium: personal experiences on the MP
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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tickbite
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Posted: Sun Apr 22nd, 2007 00:52 |
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Hey Dody,
Just wanted to say your symptoms are very similar. Even the meningitis. Aug '05 I was bitten by a tick and 30days later was in hospital with Meningitis. Doc's didn't know it, but I had Lyme Meningitis. About killed me. Since then, disabled with heavy symptoms like you. Can I ask what the lithium is for?
Wishing you the best in fast recoveries!
~Greg
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"Lyme","CFS", Meningitis
Phase3 8-2-07, MP on hold 11/2007
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Dody
Member in Phase 2
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Posted: Sun Apr 22nd, 2007 16:14 |
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Hi Tickbite,
Thanks for posting. I've enjoyed your posts on the scientific threads.
I take lithium for bipolar disorder. Misdiagnosed for many years, then started lithium 20 years ago. I'm fortunate that my bipolar is well-managed at low doses, in fact extremely low (subclinical) dose for past 10 years. Except for several brief acute episodes of psychosis prior to the episode when I was put on lithium (I even asked for lithium the episode previous), I have been very stable on lithium and have had no difficulty self-monitoring my need for meds.
My prescribing doc is progressive. Several years ago he also recommended an insulin-friendly diet, also high Omega-3 & CoQ10 supplementation, which resulted as he hoped in still-lower need for lithium.
I've discontinued the supplements on the MP, but the Zone diet (minus fish, soy & a few other odds & ends) continues to serve me well. This doc is the only one of my pre-MP medical professionals who's been receptive to the MP.
I'm still taking 300 mg of lithium twice a week. Hoping that with progress on the MP I may not need it at all. Right now it definitely helps modulate mood-type herx.
I find the MP approach tremendously reassuring as it makes issues of testing/diagnosis/what co-infections are present, etc. pretty much irrelevant. I trust that whatever I've got, from possible CWD that could have been leftover from strep? meningitis 59 years ago, to various borrelia/erlichia/bartonella leftover from 7 & 9 years ago, to whatever I picked up from ticks last summer, is being systematically killed.
My eyes were so sensitive from the infection(s) alone that I was already wearing NoIRs before I started the MP. My pre-MP docs, and the hospitalists at Brigham & Womens Hospital inpatient, saw all my symptoms separately, to be treated separately by gastroenterologist, cardiologist, ENT, rheumatologist, ophthalmologist, infectious disease "specialist," etc.
My first alternative practitioner was a holistic Lyme-literate doc who's on the MP's list of docs but is actually opposed to the MP for being too "weird." She's a big believer in supplementation including "vitamin" D.
The mainstream Infectious-Disease approach to Lyme is clearly crazy. I was treated in 2000 by a "Lyme specialist" rheumatologist who told me there was no such thing as persistent Lyme, and told me I was free of Lyme after my two acute episodes that were each treated with the traditional 3 weeks of oral doxycyclene. He put me on Vioxx (thank God it bothered my stomach and I didn't stay on it long). He also gave me the course of 3 Lyme vaccinations. I know now that by the time I was getting the last dose, in 2001, the vaccine was being withdrawn from the market.
Unfortunately, the main alternative approaches to tick-borne disease, by most of the "Lyme literate" docs, strike me as missing the mark. I applaud their courage and integrity, but I don't want to live the rest of my life on high doses of abx. I don't know anyone who has actually been cured that way. I do know a lot of folks who are hoping it is making them better.
Of course, I'm only in Phase I and cannot point to anything actually "cured" in me as yet, either, except that when I get a minor cut now, it heals fast instead of very slow. I'm looking forward to the point where I can tell Lyme friends not only that I believe in this approach (as they believe in theirs), but that I am well. (Also friends with RA, Lupus, fibromyalgia, CFS, etc.)
I also believe the MP offers the answer to what do we do about the future tick bites we will undoubtedly get.
Ticks find me irresistable. I was outside last weekend for 1/2 hour in the evening and brought a tick back in with me. My partner was outside most of that day and brought in none. We live in the woods, with deer and white-tailed mice, and are unwilling to move to someplace more removed from nature--even though I do feel very walled-off from it temporarily on the MP. Trying to be truly content with the smell of fresh air, the sound of spring peepers, etc.
During my first acute episodes of Lyme, I despaired of how I would ever be safe from future tick-borne illness. Those two episodes followed bites from ticks I picked up walking directly from my car into the house after work, found no ticks at bedtime, and woke up 8 hours later with tick attached. So much for the 24-36 hour rule.
Now we know: We can just do the MP for a month or so once a year, as maintenance, and clear anything we've picked up before it can really get going.
Is the Lone Star tick the main villain where you are? Or do you also have the Black Legged meany? Not that it matters, I guess, they all do the job, as do all the CWD bacteria we probably pick up lots of other ways.
I am very fortunate that I'm able to keep my job. The alternative was early retirement, sell the house in the woods and find a trailer somewhere. My partner's disabled already--CFS, Eppstein-Barr, fibromyalgia & a mysterious neuro lesion on her lumbo-sacral. She knows she's going to have to do the MP sooner or later.
I've just gone up to 50 mg of mino, getting better acquainted with my friend Mr. Flank Pain who I'd been seeing less of the past couple of weeks, but everything's tolerable so far.
Healing wishes to you Greg, Dody
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Dody
Member in Phase 2
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Posted: Sun Apr 29th, 2007 20:14 |
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Benicar 40 QO6 since 3/17/07 - Mino 50 QOD - Lithium 600 Qweek - Probiox
Hi all,
Thought I'd post a progress report.
Just reviewed my charted symtoms from the past couple of months.
What I'm aware of day-to-day is the ebb and flow of herxes.
But today I realized two of my long-time symtoms (decade-plus) have disappeared, at least for now: lactose intolerance and wheezing (asthma). 
And three major symptoms from my hospitalization last fall have decreased a lot since I started the MP: abdominal pain, arrhythmia, and vertigo.
Also decreased: cramps in my calves & feet, cold calves, sneezing fits, and aching, burning and "debris" in my eyes. And I heal much faster from little cuts.
That's a lot of progress in 6 weeks!
Of course, there's a lot of herxing. Overall achiness, back & flank pain, balance problems, decreased coordination both gross & fine. Increased fatigue, depression, edginess, irritability. Mental fog, word-jumbling. Increased GI symptoms. Increased joint pain. Mouth sores, chapped lips. Photosensitivity increased of course. "Pin"-like pains here and there. Postnasal drip etc, dry cough earache, headache, sore throat. Increased tinnitis, increased presbyopia. Dizzy spells. And I get winded very easily.
I've also developed sleep disturbances, and a one-time scary 15-minute episode of flashing, moving, bright lights in one eye.
I've been seeing the trees (herxes) up close. But today's look back at the overall forest of symptoms shows me I've made real improvements already.
The MP has changed my life big-time. I know I'm killing bugs. And I'm hoping I can approach age 65 (am 62 now) in better health than I've seen in years.
Hang in there, and best wishes to all, Dody
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Lyme arrhythmia Lithium Valium Tylenol Calcium NoIRs zinc oxide mod low lux home mod lite exp cover up Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08 18 Sept08
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Dody
Member in Phase 2
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Posted: Sat May 26th, 2007 00:37 |
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Benicar 40 Q6 since 3/17/07 - Started Mino 3/24/07 - Mino 75 QOD since 5/11/07 - Lithium 600 Qweek - Probiox Qday - Occasional Tylenol for hip pain at night
Hi monitors and friends,
I think I should request the pre-Phase 2 questionnaire. I see my doctor next on July 2nd. I have done a couple of 72-hour cycles and found them not much different from the 48-hour cycles.
Making good progress. More stamina, less fatigue.
Abdominal pain is reduced to occasional, diarrhea very rare. Vertigo has resolved. Occasional arrhythmias, all slow, no tachycardia. These are the acute symptoms that hospitalized me last October.
Also, no asthma since I started the MP, and my lactose intolerance has resolved. I am amazed. Those two diagnoses were with me for more than a decade.
Of course, I have a lot of weird immunopathology. Sleep disturbances, temperature regulation problems, muscle pains and cramps. Very painful hip and TMJ, and increased knee popping and crunching. Occasional small-joint pain (thumb, knuckles). Occasional nausea or reflux. Dry skin and very chapped lips. Mouth and nose sores. Tinnitis remains almost constant. Brain fog, including marked decrease in spelling and touch-typing skills.
Less back and flank pain at 75 than at 50 and especially 25 mg.
My photosensitivity has backed off a little and now cycles between extreme and moderate. Sometimes even a hint of outside light is like a punch in the face and even the 1% NoIRs are not enough, other times I have to force myself to put on 2% NoIRs to go outside.
I'm playing it safe with layers of black, with tan on the outside to make the heat more tolerable. Big floppy tan hat lined with lots of black flannel, leather gloves, and wrist gaiters made out of cut-off "trouser" socks to fill the gap between jacket and gloves. Long undies under all but the most light-proof pants. I hate it, but I have a kind of body sense that the coverup is necessary. I was pretty photosensitive even back in healthier days.
I have had no repeat of the scary dancing-lights-in-eye episode. Main eye symptoms besides photosensitivity--irritation, increased presbyopia, and what I experience as occasional "debris in" my eyes which I treat with sterile saline and then Genteal gel drops, all began before I started the MP. I started wearing my NoIRs for comfort from the infection several weeks before.
When I remember how sick and bewildered I was just a few months ago, feet-up resting 95% of the time, I am amazed and profoundly grateful at how far I have come in just two months on the MP.
Many thanks as always to those who make all this possible.
My best, Dody
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Lyme arrhythmia Lithium Valium Tylenol Calcium NoIRs zinc oxide mod low lux home mod lite exp cover up Mod Ph2Jul07 Ph2Apr08 D25 12 Feb08 18 Sept08
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Mon Jun 18th, 2007 01:12 |
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Dody
Thank you for filling your questionnaire. You are now able to read the Information in the Phase 2/3 forum.
We encourage you to begin a new progress report there in that forum to discuss the Staff recommendations re Modified Phase Two as most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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