The persistent tortoise

This is a very short blog about a tortoise in the slow lane. For many years (how does this happen? - we shouldn't blink!) I had a solitary discussion about arthritis:

(1) I was getting very old very fast. (I was 55) and everything hurt.

(2) My hips are in agony.

(3) My fingers and shoulders hurt all the time.

(4) My neck is so stiff that I can't turn my head.   It hurts even when I don't try to turn it.

Most of my joint pain went away while I was "sleeping" that first couple of years. Then my hips were incredibly painful during walking - then it went away. My finger joints were worked on one at a time and have slowly stopped hurting, though still have  some residual swelling, probably permanent, which I accept.

 During the last couple of weeks, my neck pain has gone - poof! There is minor achiness, but nothing like past months and years. I can't help wondering if that is the main place, along with my brain, where these creatures have been hiding. I did spend up to twelve hours a day for twenty-eight years holding up my violin, which may also explain the shoulder aches that are gone. The "place of interest" seems now mainly to be my brain.

I have recently regained more feeling in my right leg (my bad one) than I ever thought I would, but my balance is off some, especially on Azithromycin days. My rueful saying is that except for Tuesday, Wednesday, and Thursday, Monday is my worst day. Friday is usually a little better, gradually improving till Monday, when everything starts over. A very big thing is that, as I wrote before, when I look down I no longer go numb.

Last Sunday night, on the way to the barn, I told Richard that I had just noticed I felt that I was having a "glimmer" - or the closest I could get to one with a nonstop pulse. Of course it was over soon after that when I took my evening abxi. I'm hoping it will happen again soon. This ended being longer than planned!

Rica

Comments

Ruth you would likely have a

Ruth you would likely have a whole lot less nausea if you would consider switching to Tinidazole,   Oh, I think I may have suggested this before.  Louise
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The caffeine interests me as

The caffeine interests me as well for treatment.  Looking back as to a possible time when I was infected with the Lyme & co-infecctions I began another downward spiral in my health that started my heart arythmia (some electrical circuit dysfunction was how it was explained to me) & waking up in the middle of the night not able to breath.  At the time I was told it was an anxiety attack, or was it air hunger related to the bacterias.  Anyway I quit drinking caffeine - coffee mostly as I didn't drink much soda pop as it seemed to agitate my heart rhythm.  I suffereed major headaches for a week withdrawals.

I wonder if it is advisable during a pulse as I get slammed from the flagyli.  Day 2 today at 1 gm a day & I have lots of nausea which is usual for me (all pulses but 2 out of 25.

Rica, so glad the kids are beautiful!!  I took some pics of a very photo genic goat at the petting zoo recently.

take good care

peace

r

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Hi MacKintosh, I am pretty

Hi MacKintosh,

I am pretty sure caffeine induces Cpni into a EBi state in a dose related manner which makes you feel better, have more energy ect. And if you are taking antibiotics, the Cpn will subsequently probably be killed when they are at their most vulnerable point of converting from EB to RB states. Of course as great as this sounds, if you take too much caffeine too soon, a lot of cells will undergo apoptosisi and dump their antigenic contents. That is when your immune system sucks all of the fun out of life... ;)

- Paul

Caffeine interests me. I had

Caffeine interests me. I had noticed, from about 2000 to 2005, caffeine no longer affected me and I gave up trying to use it as the 'stay-awake' drug of choice when I reached four cans of diet Coke or Pepsi, or four or five cups of black coffee, during one workday.  It just had zero effect, aside from giving me a headachey, draggy feeling.

I started the Wheldon version of the protocol 06 October 2005, while off work for a case of optic neuritis.  When I went back to work a couple of weeks later, I had a cup of coffee here and there, noticing it actually perked me up a bit.

By early 2006, I realized I could no longer linger over a cup of caffeine at dinner; I'd be awake much too late!  Then I noticed coffee or any caffeine  after about 4pm would keep me awake.  (I admit I sometimes used it to counter the drop-dead-sleepiness the protocol occasionally gave me.)

Today, though I drink coffee daily, I know to limit it to mornings, and no later than noon, unless I WANT to be awake all night.  I think cpni had my body SO screwed up, it wasn't reacting normally on a lot of levels, caffeine intake and metabolization being only one of them.  I'm just happy this, like so many other things, has returned to 'normal' for me.

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Rica, Assuming those are

Hi Rica,

Assuming those are 200 mg pills that is a pretty healthy dose. I am now almost immune to caffeine. I do not get any stimulant effect from it. This is pretty cool as I have been arguing that caffeine is not a stimulant with both Dr. S's for some time.

Just 5-6 months ago I was pretty much terrified to take more than a single 200 mg pill because of how bad I would subsequently get hammered. Now I often do not even pay attention to how many pills I take ;)

Like you I am still not finished but I am getting very close.

- Paul

PaulSerious stuff here, for

Paul

Serious stuff here, for sure.  You said it - we just don't know what lies ahead.  Pretty certainly it will be better than what would have been.  (It already is.)

My daily dose is down from three to a fairly steady one and a half caffeine.  As you probably know, I went back on flagyli twice a day.  The nausea made higher dose caffeine unsustainable.  I get a pretty hard hit from what I am doing, so will probably hold it there for a while.  That will give me a baseline to compare during the next few weeks to see if I get improvement. 

Caffeine has been daily since November 20, when I began it, and added flagyl back a month or so later. 

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica, It sounds like you

Hi Rica,

It sounds like you have been making some nice progress of late which is great. I am not so sure any inflammation will remain when we are done with this treatment. I could imagine some damage that was done by our immune systems such as calcification, scarring, build up of plaques, ect. could be permanent though. And I guess any of that could cause long term irritation which could lead to a natural inflammation. I guess we will find out when we get there. BTW how large of a dose of caffeine are you taking now? And how long have you been taking it?

- Paul

Your blog gives hope, and

Your blog gives hope, and reminds us all of how long the journey may be but how persistencei pays off. I am so pleased for your progress and full life now.

Suzanne

FMSi/ME dxi 2001. Started Wheldon Protocol 16 Jan. '10. Mino 100mg q 24 h. Roxyi 150mg q 12h. Cholestyramine, LDNi 0.75mg q 24 h. prophylactic migraine-topamax 75mg q 24h. migraines, headache, fatigue, sleep problems, body aches

RuthIt is so good to see you

Ruth

It is so good to see you here.  I hope all is well with you.

We have six Sorcerer kids - all really beautiful.  Kidding season has just begun, with the very best first. 

Thank you for your kind words, but you can turn them around because they certainly apply to you.

Rica

 

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica,another window has

Hi Rica,

another window has opened for you, that is sooo awesome.  I am so glad you have experienced the relief from all that pain, super!

 You have the glimpse so it will happen again, I will pray for that.

You are more than persistent, you are courageous & lovely, inside & out.

How are the kids?

 

peace

r

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<