Pulse 2...(five days post-pulse)

Blogging for the record....  My second pulse was  1-250 mg of Tinii for 4 days.... May 24-27, 2008

1.   First two days I noticed an increase in energy

2.  Day 3  my LEFT knee and hip became painful and stiff. Up until this point I have not experienced problems with my left leg, it's been all in my right knee and sacriliac .   I could barely walk and was unable to go up or down stairs.   I still have major problems with my right leg - knee (can't squat or bend, difficulty walking up stairs.)

2.  Again increase in coughing... as well as chest congestion - benedryl helps

3.  Red rimmed/watery eyes.

4.  Third day I had a really bad headache (and I usually don't get headaches)

5.  Sporadic moments of feeling aggression and irritation,impatience but nothing major

So far, the reactions have been  tolerable (except my mobility)... I increased the "moppers". 

I found  it interesting, though, I experienced MORE bad reactions (agression, crying, fleeting "s" thoughts [which definitely is NOT me, nor would I act upon them], depression) when I took the 200 mg/day of Nitrofurantion for the bladder infection a few weeks ago.

My energy levels seem to be slowly increasing which [coincidentally (?)] coincides with when I added the Cortef for my adrenals).  My endurance is still very low, but I am hoping this will improve in time as well. 

Jeanneroz

Comments

Since Paula has

Since Paula has been bedridden, she has been taking the glucosamine recommended on the protocol.  She used to get very bad back pain and as you can imagine, this is a bad thing when bedridden.  The glucosamine helps this enormously. I can imagine it would help with joint pain too.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dxi.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

It doesn't help with joint

It doesn't help with joint pain. Unfortunately. I take Glucosamine and Condroitin since years as I have to walk a lot and have sleepless nights at the moment because of the pain in my hip and knee. I will take some painkillers tonight.

 Daniela

CPni, abxi monotherapy for 2 months, NACi, Wheldon CAPi since April

Cpni diagnosed. Monotherapy Feb08 - April 08. Then full Wheldon protocol. Feb.09 first steps toward intermittent. NACi, Vit D 2000IU, B complex

jeanneroz, to me your joint

jeanneroz, to me your joint pain is a really good thing, even though it hurts SO much now. When I began to get more and more arthritic now years ago, I started taking glucosamine/chondroitin. Our then 12 year old Great Pyrenees was arthritic and limping and within 12 weeks was better - I gave myself the same dose I gave him. Mine just improved and then began sliding again. I thought - as I have said here before - I was getting really old really fast. After months on the protocol, my joints very systematically hurt horribly for months and months. Somewhere in my blog there is a chapter about it. As I also keep saying - this doesn't happen in real life - as is also true for the normalized blood pressures for so many here. My arthritis is ALL GONE. I believe your will be, too.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 51 pulses NC USA

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

Jeanneroz, today is day 18

Jeanneroz, today is day 18 or so of your current pulse, how are you doing with this pulse now that you are past the halfway mark?

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Sorry Jeanne I just

Sorry Jeanne I just realised we already talked about the splenic flexure way back. Do you think it could be abxi related now that you find it occurs during pulses? If so presumably it shows it is yeast-related and not something else like EBVi? Whenever I started an abxi (including the pulsed abx) I get yeast symptoms.

CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacin">i 3 x 500mg. Mel 3mg.

Hunter: Don't think - experiment

sunshine, the imagination is

sunshine,

the imagination is a wonderful gift; there will be lots of time & energy for planting in the future.

Re Louise's yoga suggestion; I bought a disc on EBay, Yoga for the Rest of us, Back Care Basics by Cappy (the name is appropriate here Cool)  Anyway, not that you are ready for all that because I am not.  I just started & as I have crashed a bunch this past few weeks (about 5 days) my yoga was pushed to the back burner.  I am going to roll out the matt today for a little go.  I brought this up because of the breathing  & de stressing & the beginning & into the 2nd section of the disc, I think, would be helpful for you as it has been for me.   I feel better even doing my modified version, even though I haven't even made it through the 2nd section yet.

blessings,

ysic

r

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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<

Thanks Michele for the

Thanks Michele for the linked description of macrodantin (nitrofurantoin, generic name)I might have looked it up when Jeanneroz first shared her experience with taking it.

Jeanne I have had headaches several days into my pulses. 

I found my initial energy increase during pulses a real plus.  Did you start the Cortef before you started your second pulse?

Sorry to hear that more joint discomfort is up for you.  Have you tried the Aleve (naproxen sodium) to see if it helps as has been suggested through other threads as helping with inflamation?  At least on a temporary basis during the pulse?

Sometimes a 5 - 10 minute rest of meditation helps me when I get that surge of irritation.  I am beginning to think that for myself it is really a subtle fatigue that I refuse to recognize.

Might you wait a full month before another pulse?  It is hard to call whether more time is needed for repair or if another pulse would help.

It would be good to hear from others who's manifestation involves joint invovement.  

I can say that I have rarely had sacro-illiac flare-up since starting this protocol and my life was very affected by any attempts at over lifting (average lifting) for several years before CAPi.  So for me my improvment there was very early on.   Now my energy is improving and I can do more simply necessary activities of daily living.

Blessings to you Jeanne.  May the reversal of these joint distresses be swift and dramatic.

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Interesting remark about the

Interesting remark about the Cortef.   Keep us posted.   Maybe your reaction to Nitrofurantoin had a synergetic effect in combination with other antibioticsi.   Reading this<, on its own it is unlikely to produce the symptoms you describe.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Thanks for the input

Thanks for the input Michele..... you might want to read Eric Johnson's post from this <discussion on our site. 

He stated the info from wiki on nitrofurantoin was not accurate. (?)  I really don't know but I did research it before taking it and there are several places on this site (including remarks from Jim K.) that even though it's half life is short it does affect the cryptic form.  Not as effective to be used like Tini or Flagyl but it does affect the cryptic formi from my understanding.

So it's difficult to conclude for sure if the Nitrofurantoin alone caused the die-off  as I was a week post-pulse, (porphyriai?) plus I had a glutathione shot 2 days before I started the Nitrofuantoin.

I just know I definitely noticed more reactions when I took the Nitrofurantoin than from just my first pulse of Tini  It could very well have been a synergistic effect of everything; i.e., timing or maybe it was too soon after my 1st pulse......

Louise, I started to Cortef  on March 7th before my 1st pulse.  Perhaps the combination of adrenal support as well as starting to pulse is helping, but still a long way to go.  I tried very hard to "count to 10" before responding to my husband, LOL.... poor guy never knows what to expect out of my mouth sometimes!  When I get like this, I usually wake up this way, so I can't correlate it to being tired!  Not a good way to start the day Sealed

I hesitate taking Aleve (at least the tablet form of it, they do have a gel capsule) as it, and the generic versions, have talc listed as an ingredient... I used to have  breathing issues (at least in the past)  taking  medicine or OTC that has talc so I put it back on the shelf and didn't buy it.   I do take Ibuprofin and that seems to help.

Ruthie, Nah... no cane but I grabbled the expandable snow removal brush at the bottom of the basement steps!  It worked for inside the house, LOL.  I do need to use something when I get like this as I have tripped many times because my legs won't go, or lift up.   Thanks for the shish boom bah! ;)

I forgot to mention that on the third day I was having severe gut pain again in my left splenic flexure area.  I also had it on the first pulse, it seems to be improving just with my 1st two pulses and I hope it eventually goes away completely!

It's such a gorgeous day here!.... This AM I spent some time under the gazebo staring at my windowbox and backyard (that I have no energy to plant)  In my mind I have it visualized and it's a beautiful!!...........hmmm perhaps next year! or by Fall I'll be able to at least plant bulbs Undecided

 

 

Jeanneroz ~CPN diagnosed & started protocol  4/2007, also HV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 200 mg/doxyi/day~ 250 mg AZITH M/W/F ~1st Tini pulse 4/17/08- 1 250 mg. tab for 2 days. 2nd Tini pulse 5/24/08: 1-250 mg 4 days,supplmnts

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

YAY, all hail Princess

YAY, all hail Princess Troll,

#2 under the belt!  Keep taking those moppers as you have a few more days to go where reactions will come & then go..hopefully!

Glad you felt that energy thing going on with this pulse.  Those come & go for me.

Good Job!  Do you have canes, I have a really neat Komperdell I believe is the spelling that is collapsable.  When I am needing the help of my upper body to get the walking & steps done I find it quite handy.

 

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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<