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Aussie Barb
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 Posted: Sat May 6th, 2006 22:19

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Thanks Diana,
In this your return to Phase One.. yes, it is ok to increase to 75mg.
should the herx start looking like going toward high, you can take the mino 25mg or 50mg again to bring it back..
all best, Barb ...



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
Aunt Diana
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 Posted: Sun May 7th, 2006 01:13

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Thanks Aussie Barb,

I hope that corner is just around the bend for you.. We are all praying for that for you.

Keep up the good work and the spirit! It will happen....I know that.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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 Posted: Sun May 14th, 2006 20:32

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I finally got up the courge to take the 75mg mino yesterday. It may be a bit early to assess but so far so good. I have some lower back ache and slept almost all day today, but am feeling pretty okay so far.

I have been given the go ahead for Phase 2 but that will not happen til after I see my doctor in early June. Meanwhile I'll try to ramp up to 100mg mino again. I'm really interested to see what my Vit D is at....I've been really strict about avoiding light and D in diet.

My husband Bill, is doing much better....so things have gotten a lot easier around here. It was rough going there for a while with both of us so sick.

That's all for now.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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 Posted: Fri May 26th, 2006 19:22

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Hello everyone,

I must admit the 75 mg are really the hardest so far....my herxing has been very painful....all over subcutaneous ouch. Also a bit teary.

I tried drawing it out for a few days after the third dose because my sister was coming to visit....think that was a mistake; I slept all day and all night practically for two days. Was awake for about 6or 7 hours a day and very tired as well as achy.

Two nights ago I switched to 50mg mino and that definitely relieved herx...felt pretty good for two days. Although major difficulty sleeping....maybe I was all slept out.

Now I'm going to try alternating the 75mg with 50 mg. and see if that helps.
I can still tell I'm killing them beasties

I'm hoping to attain the 100mg level by the time I start 2nd phase. Maybe that is not so important. Any comments?



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aussie Barb
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 Posted: Fri May 26th, 2006 19:59

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Diana
It isnt necessary for you to attain the 100mg level before commencing the Modified Phase Two.. Dr Marshall recommends discussing with Doc re the addition of a 2nd abx asap esp as you have been on MP for close to 6 months.
Before starting Mod Phase 2, we encourage you to begin a progress report in the Phase 2 forum to discuss your new meds and dosing. Thank you.
all best, Barb ....



____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
Aunt Diana
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 Posted: Mon May 29th, 2006 10:06

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I've been rotating the mino dosage; 75mg then 50 mg on 2nd day, then 75mg etc. Have done this twice with much easier herxing and belive tomorrow I will ramp up to 75 each dose.


The amazing thing is that yesterday a.m. I woke up at 6:30a.m. (unheard of in the last 15 years) and kept going all day until 12 midnight when I finally went to bed. I couldn't believe it! Very few aches and pains. Needed to sedate myself to sleep.

this morning I am up again at 6:30 and have all kinds of plans of chores I want to accomplish today....my head seems to be working.

Just four days ago I could barely get out of bed! I am really excited ....it feels like the old me has come back for a while. We'll see how long this lasts but I am enjoying every moment for now.





____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
jrfoutin
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 Posted: Mon May 29th, 2006 21:15

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Good deal Diana. It was such a relief when I finally got out of the "sick all the time" rut and now have "more or less" well-defined Herx events and "more or less" well-defined energy spurts in between. I think it is like Belinda said in the Chicago conference CDs. Wellness sort of creeps up on you in and around the Herxheimer days.

There are enough surprises either with good days or bad days that I know I'm not out of the woods yet, but at least seeing the pattern that others have described makes me take some courage for the rest of the journey.



____________________
Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
sunflower
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 Posted: Tue May 30th, 2006 04:59

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hi diana,

so glad to see you getting some long bursts of energy;  it's so exciting, isn't it!  75 mg mino was definately the worst level in phase 1 for me--worse than 100 mg.  it may be that way for you also, but alternating doses sounds like it's working to moderate the herxing for ya.  hope your hubby continues to recover well from his surgery, also.   you guys have really been through the ringer, haven't you?  i'm hoping much better days are ahead for both of you:cool:.                God bless...sun



____________________
lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
Vicki SA
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 Posted: Tue May 30th, 2006 06:23

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Go Diana!

I am also having bursts of energy and finding myself doing things that I haven't done for a very long time. I can now load the dishwasher anytime it takes my fancy LOL. Fancy rejoicing about being able to do housework LOL. Feeling better does creep up on you and inspiration follows!

For any needing to rest more in Phase 1, don't panic! It IS worth it.

cheerio Vicki



____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
Aunt Diana
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 Posted: Wed May 31st, 2006 03:16

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Thank you all for your lovely replies. I am so happy because I haven't felt this way for 17 years. This program is working!!!!! Hallelulla!!!

And much gratitude to Dr. Marshall and his "dream team".



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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 Posted: Tue Aug 15th, 2006 19:44

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I thought it was time to share some of my experiences on the MP with those of you who are starting out. I have been on MP now for 8 months. It has been an interesting and somewhat bumpy ride, but I am definitely going in the right direction. It took me a while to get through phase I because during that time my husband needed heart surgery....so I had to stop the protocol for a while. During that time I felt I had more energy than I would have had before the protocol.

I now wish I had made a list of my symptoms so I could systematically rule them out as they cleared, but alas I did not. I remember one, however, that I haven't had since I started the MP ( that is the right side of my face would droop at least once a week)....(sort of like Bell''s Palsy) that hasn't happened in ages; I am grateful for that.

Another improvement that is wonderful is I am reading again. I didn't read for 15 years or so...at least I didn't retain anything. Now I'm reading a book a day and loving it.

I am finding phase 2 a bit easier than the first phase....I remember I had a lot of pain during phase 1...very little other than aches and stiffness in phase 2....but my neuro herxing has probably worsened.

I have been alone since June and that is starting to get to me so I've decided to take a break and join my husband in Florida. ( I stayed up north because of the bright sun in Florida) but I guess we can figure that out as we go along. My bedroom is already dark and the den is dark so I can use those two rooms for the time being.

I am so thankful that there is at last an answer to my health problems. And so grateful to Dr Marshall and his team.....this website is the best part of it all.

Happy herxing to all.

ADD December 2006:
This year has been the first year I've been able to send out christmas cards in a long time...it incredible that I can focus and my handwriting is normal again...I'm even updating and starting a new address book. That doesn't seem like a lot to a well person but it is unheard of for me, in the past many years....sometimes the improvements sneak up on you and take you by surprise.

February 2007:
Sometimes, now I can just fall asleep at night..not too often....yet still, it's unbelievable since I haven't been able to do that without sleep meds for over40 years.

March 2007:
My allergies have almost disappeared. This protocol works wonders.

May 2008:
I have been on the MP a little more than 2.25 years now....

I came down with Lyme Disease about 20 years ago. I had been on amoxycillin and various other oral antibiotics pretty steadily for 17+ years. I would reach a point where I felt 75-80 percent back to normal and would try to stop the abx. Each time I did that, I wouid quickly relapse and start to feel awful again. I had both neuro and the arthritic symptoms....they were all horrible. But of all of them I believe the neuro was the worst.....at times I would have such severe vertigo that I would be thrown to floor and have to stay there until the vertigo wouild stop. It was impossible to stand up or move without making it worse...once this happened to me in a public park. I'm sure people thought I was drunk....two kind men realized what was happening and carried me to my car in a parking garage a few blocks away. The vertigo was so severe that I couild not make out their faces....it was like being inside of a kaleidoscope and my eyes could not focus. So I will never know who those men were. I was fortunate that I was able to talk and tell them where I had parked.

Well, I think that gives you some idea of the severity of my symptoms....the arthritis was debilitating in its own right....by the time I was in my early 50s I was barely able to touch the ground....my flexiblitly kept getting worse until I couldn't put on a pair of socks. I was also taking Advil as if they were "tic tacs:. I would define my days as a "4 Advil day" or and 8 Advil Day, etc.

In 1984 I had started my own business in Boston and much to everyones surprise it became a great success fairly quickly. (I am so thankful for that...because by the time I was really sick, about 4 years later, the business had gained enough momentum that it was able to carry on without my leadership. If it had not been for that business, I don't know what I would have done because there was no way I could hold a job. I finally had to admit I couildn't do it anymore in 2004....that was when I closed the business.

Soon after that in Sept. of 2005 I discovered the MP and started it as soon as I could get all my ducks in a row.

Today....I absolutely cannot believe how wonderful I feel. I thought I would never feel this way again. (Actually, I had forgotten how it felt to feel good)
Interestingly, this has sort of snuck up on me. The first two years were very difficult....there were times I wasn't sure I was going to make it. My IPs were very severe....there were many times I would go for a week without beiing able to bathe or even wash. (Something unfathomable to a neatnik like me) Just to emphasize how severe these were...I could hardly make it to the bathroom....sometimes I did not. I don't want to kid you....it was very difficult to learn how to control the IPs.

But during the past two or three months the IP's have become very tolerable and I have been getting stronger. My good periods have been lasting longer and longer...this most recent 10 day cycle I felt good every day (a first). Then this week, I have been able to do things my brain thought it would never do again....I have been multi tasking, organizing and focussing in a way I had forgotten was possible.

I am simply so thrilled to report these new (or renewed) abilities that I want to "shout it from the rooftops".

I hope this gives you the encouragement to keep going....there were times it felt like this was endless and was going to be my life forever....but here I am. on my way back to my old self.

Thank you from the bottom of my heart to Dr. Marshall, Meg Mangin, Aussie Barb, JR Foutin, Julia, PB, Vez and all of the people on the website who have been so helpful and supportive. It's only a matter of time that you will get the recognition that you so deserve.

July 08:
Oh yes....that reminds me of my "allergies" which apparently were not alllergies at all, since they have all disappeared.

I had hepa filters, special bedding, popped claritin and benadryl all the time and felt miserable with itchy eyes and stuffy head.

In a year or so I'm going to try a new patch test for hair dye, hoping that perhaps that allergy will leave as well.

When I consider the money I am saving by not needing hepa filters, allergy meds, the Allergist and his weekly pinprick....(which did no good whatever) and all the stuff I used to get in the health food store...I'm sure I spend less on the MP meds.

see also
Aunt Diana: healthy teeth and gums after 3-4 months on the MP
Aunt Diana: I am definitely going in the right direction.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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Location: Vero Beach, Florida USA
Posts: 971
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 Posted: Sun Aug 10th, 2008 23:47

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May, 2008

I have been on the MP a little more than 2.25 years now....
I came down with Lyme Disease about 20 years ago. I had been on amoxycillin and various other oral antibiotics pretty steadily for 17+ years. I would reach a point where I felt 75-80 percent back to normal and would try to stop the abx. Each time I did that, I wouid quickly relapse and start to feel awful again. I had both neuro and the arthritic symptoms....they were all horrible. But of all of them I believe the neuro was the worst.....at times I would have such severe vertigo that I would be thrown to floor and have to stay there until the vertigo wouild stop. It was impossible to stand up or move without making it worse...once this happened to me in a public park. I'm sure people thought I was drunk....two kind men realized what was happening and carried me to my car in a parking garage a few blocks away. The vertigo was so severe that I couild not make out their faces....it was like being inside of a kaleidoscope and my eyes could not focus. So I will never know who those men were. I was fortunate that I was able to talk and tell them where I had parked.

Well, I think that gives you some idea of the severity of my symptoms....the arthritis was debilitating in its own right....by the time I was in my early 50s I was barely able to touch the ground....my flexiblitly kept getting worse until I couldn't put on a pair of socks. I was also taking Advil as if they were "tic tacs:. I would define my days as a "4 Advil day" or and 8 Advil Day, etc.

In 1984 I had started my own business in Boston and much to everyones surprise it became a great success fairly quickly. (I am so thankful for that...because by the time I was really sick, about 4 years later, the business had gained enough momentum that it was able to carry on without my leadership. If it had not been for that business, I don't know what I would have done because there was no way I could hold a job. I finally had to admit I couildn't do it anymore in 2004....that was when I closed the business.

Soon after that in Sept. of 2005 I discovered the MP and started it as soon as I could get all my ducks in a row.

Today....I absolutely cannot believe how wonderful I feel. I thought I would never feel this way again. (Actually, I had forgotten how it felt to feel good)
Interestingly, this has sort of snuck up on me. The first two years were very difficult....there were times I wasn't sure I was going to make it. My IPs were very severe....there were many times I would go for a week without beiing able to bathe or even wash. (Something unfathomable to a neatnik like me) Just to emphasize how severe these were...I could hardly make it to the bathroom....sometimes I did not. I don't want to kid you....it is very difficult to learn how to control the IPs.

But during the past two or three months the IP's have become very tolerable and I have been getting stronger. My good periods have been lasting longer and longer...this most recent 10 day cycle I felt good every day (a first). Then this week, I have been able to do things my brain thought it would never do again....I have been multi tasking, organizing and focussing in a way I had forgotten was possible.

I am simply so thrilled to report these new (or renewed) abilities that I want to "shout it from the rooftops".
I hope this gives you the encouragement to keep going....there were times it felt like this was endless and was going to be my life forever....but here I am. on my way back to my old self.

Thank you from the bottom of my heart to Dr. Marshall, Meg Mangin, Aussie Barb, JR Foutin, Julia, PB, Vez and all of the people on the website who have been so helpful and supportive. It's only a matter of time that you will get the recognition that you so deserve.

August 08:
Have been organizing home office and paying bills....first time in long time, Husband used to do it but I think I'm able to stick it with it now.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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 Posted: Tue Aug 26th, 2008 04:22

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I feel compelled to write here tonight because I am beside myself with joy!!
This may not seem to amount to much to someone who has not been in my shoes but, today, after a long car ride to and from a doctor's appt, i was feeling so good I got back into the car and went back to the mall by MYSELF!!. I haven't done this in 2.5 years. I went to one of my favorite arts and crafts shops and walked up and down the aisles, just the way I would have done 21 years ago, before I came down with Lyme disease.
This is the first time I have been in a store and did not get confused or overwhelmed or have any neurological problems beset me in over 20 years!! I could have stayed in that store for hours....I just knew it....and I would have been fine.

I am so ecstatic about this....it is as if for the first time I am really aware that what my recovery is going to be like...and I am crying right now as I write this. This is better than waking up on Christmas morning as a kid....this is the most wonderful experience I have ever had.

All my fears and doubts have just gone out the window....I will be well again and I will be like other people again. Hooray. And Thank you.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Vicki SA
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Joined: Fri Sep 16th, 2005
Location: Adelaide, Australia
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 Posted: Tue Aug 26th, 2008 06:02

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Great to hear your news! May those improvements keep coming and adventures abound :D!

Cheerio Vicki



____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
Sunbeam
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 Posted: Tue Aug 26th, 2008 09:01

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Aunt Dianna,

Thank you for that last paragraph, it was just what I needed to hear I am so delighted for you.  I feel hopefull,  Lynn



____________________
CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
Dr Trevor Marshall
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 Posted: Tue Aug 26th, 2008 10:57

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:)

thelymelight
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 Posted: Tue Aug 26th, 2008 15:25

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Thanks Diana for your wondeful news!!!:D..It is so encouraging for newbies like myself...as I too have had Lyme for over 20 yrs and have been disabled by it for the past 18 yrs....

I start my Minocin in Oct, (still weaning from cortisol) so I look forward for the healing to begin...Just curious, how long have you been on the MP now?

Keep the good news coming!
Cheers ~ Lisa :cool:



____________________
Lyme, Babesia, Mycoplasma,18+ yrs, neuro-psych-cogni|Sept08/1,25D,30.42, 25D/8.40, July08/11.6, May08/18.0,Nov07-19.6; Beni Feb08, Low lux-some areas of home. MEDS:Hydrocortisone .75 mg/day, Cipralex 10mg, Cal/Mag
Aunt Diana
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 Posted: Tue Aug 26th, 2008 18:13

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Thank you all for your good wishes. To answer Lisa's question...I have been on the MP for 2yrs and 8 mos. (I think I started to see real and lasting recovery at about the 2.5 yr mark....things just keep getting better...I recover from any overexertion within a few hours now....not days). I am still at fairly low doses of abx, too, taking it slow and keeping things as tolerable as possible.

Keep going everyone....you will not believe how wonderful it is when you start to get better.

It can only be a matter of time and the world will recognize this discovery for what it is....I feel so fortunate that I have been one of earlier pioneers. Thank you again, Dr. Marshall. There really are no words good enough to express my feelings.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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 Posted: Mon Sep 29th, 2008 02:39

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Phase 3 meds benicar Q4

Light: hard to keep track....am much less sensitive lately and have been "out and about" much more frequently. (shopping during daylight in car, 1-2hrs every other day) Always with noirs and sunscreen, but have not been as strict with long sleeves.

Fatigue varies 0-8 ( mostly 0-3)
aches varies 0 - 4
energy 0- 5 (great on many days)
insomnia 1-4 (this had disappeared but is resurfacing) tending to make my schedule weird
hot to touch 0-3
general malaise 0-3
blurred vision 0-3 (intermittent)
depression 0- 9 (really bad for a few days week before last when I had upped clindy to 74mg
brain fog 0-1

Last two weeks have been generally good with a definite increase in activity, planning ahead, creativity, follow through, etc. Brain fog is minimal. Have started to go out without needing a driver. I have much more stamina and feel like I am almost "normal" much of the time.
Worst problem is emotional (swings, depression and anger).
I intend to ask doc for an antidepressant.
All in all I am very pleased with my progress. I never believed I would feel this normal again.
Thanks again to all the hard work that has gone into this.

I almost forgot to mention...the other night I woke up to take benicar and realized I had caught a terrible cold. I was sniffling and sneezing, had a very scratchy throat and that terrible stuffed up feeling in my head. I realized at the moment, that I hadn't experienced a cold for years and dreaded the next 6 days or so, thinking that it would take that long probably to recover. After getting up to get another box of kleenex I fell bac to sleep feeling very miserable. When I woke up I had no sign of a cold at all. Don't know if that was a herx or if my immune system just kicked "butt" and knocked that cold right out.
Whatever it was, it was amazing.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
Aunt Diana
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 Posted: Sun Oct 26th, 2008 22:12

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Phase 3, benicar q4

Light: 3-4 hours well covered &noirs in car for appts. and shopping
Non MP meds none

Neuro 3-4
gen'l malaise 4
brain fog varies 2 - 8
trouble finding words varies 0 -7
overall feeling lousy 3-4
fatigue 4-5
stiffness 0 - 4
joint pain 5 (need extra hydrocone a few times per week)
sleeping a lot 3-4

I'm tapering off a bit so I can get a break. I have lots of important and potentially stressful obligations coming up so I want to be in my best possible form.

Aside from that, I've begun several projects....have probably bitten off more than I should but it's exciting to be feeling like doing these things again.
I have organized my work room for sewing and my studio for painting...plan to do some faux painting (haven't been up to this for the past several years but feel if I proceed slowly I can probably accomplish some interesting things).

Hooray!! I also have signed up for some courses this fall. Wish me luck!! I will be taking a sculpting class. This can be quite physically strenuous but I feel that I am up to it if I go slowly. It's so much fun to be getting back to things I love to do. The other is an oil painting class using old world techniques, and I'm very excited about these.

I'd really like to take a complete break but will start by tapering off on the meds. and see how this goes first....then perhaps drop the abx a bit more. Would love to see how I feel when I'm not herxing so this is the way I will try to get there.

Thank you everyone.



____________________
Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21

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