Addendum - Pulse #1 - Day 21

Addendum to my blog.  It's day 21 post pulse. I am depressed and sick and tired of being sick and tired.  I guess it's finally hit.  I only took 1- 250 mg of Tindamax for 2 days.  Nothing really happened until now.  I was experiencing pelvic/gut pain but kept writing it off to the pulse.  so I then went the route of gyn and  urologist which has led me to:

1) I have a bladder infection  -- was prescribed Nitrofurantoin 100 mg BIDi

2) Per gyn - I  have BV and gyn wants me to use Clindesse -- I have not administered it yet as I am concerned I'll be on antibiotic overload and could possibly cause another pulse or yeasst.  I have no idea how it would interact with CPNi.

3)  I am experiencing fever  (low but noticable), extreme fatigue and malaise -- can barely move around the house or get out of bed. Depressed and having weird thoughts, occasionaly chills (endoxin or bladder infection?) Okay, yeah, post pulse ......

4) Is this just timing or the additional antibiotic added to my mix? Pulse die-off just now hitting -- I had a glutathione shot last Friday and Sunday everything started to fall apart.

5) I have upped my Vit C, chorella and have been taking benedryl (which seems to do the most good) but read the benedryl possibly can cause porphyriai. I'll try cimitidine tomorrow instead.

6) Any thoughts on the Clindesse??? don't really want to use , as the "dose" is suppose to last 5 days and I have no idea how it could affect the CPN....

I am trying to determine if all of this is a culmination of my pulse (the bladder infection and BV) immunei system is down or if everything just kinda hit at once....

Damn Cpn...  

Comments

 Jeanne- somehow your

 Jeanne- somehow your phrase evoked a humerous image: "It's spring, and the Creeping Porphyriai is in bloom!" Sounds like one of those ground covers in a British garden!

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim, which phrase? LOL I am

Jim, which phrase? LOL

I am beginning to realize I have porphyriai problems..... and they DO creep up on me.  (Some really good info/posts on the topic as of late!) 

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; Protocol:  200 mg/doxyi daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi<

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

Hi jeanne. The quinolone

Hi jeanne. The quinolone that you took, was it levaquin? Because I cant tolerate levaquin at all but I am able to get the avelox semi tolerated ( mind you it does cause bizarre sickening reactions as well but at least i can get it down), Avelox does seem somewhat more tolerable than the levaquin forsure - for me anyway.

I agree that quinolones do cause evil reactions but they are also very effective against cpni so its a tough call. Maybe much of the ill effect we feel from the quins is die off? I do know that they are also toxic to tendons but I'll be honest I didnt really have any pain issues when i took them, in my case it was mostly die off symptoms, like porpheria and bronchospasm and tremors and brain issues etc.

Anyway i do so much hope you feel better soon. My advice for the issues you have remains with metrogel, metro tablets and still unfortunatlyt the levaquin but I understand if you cant do the quins then I really hope the nitro does the trick for you, because it didnt for me... I had no choice but to take the avelox.

Also, at one point i was on all of those plus the nitro about 4 months ago and I actually started wondering if that by taking the nitro maybe it cleanses the kidneys and bladder enough to be better able to metabolise the metro and quinolone... it was just a crazy theory of mine, not sure whether it has any merit or not but again, it was just a thoery of mine based on my experience because i was just like you, I was deathly ill from the quinolone family but was able to take it while taking the nitro and have been semi-ok with it since then

Feel better

 

 

 

 

 

 

&nbs

Hi, I dont know what

Hi, I dont know what clindesse is, I dont think we have that here, I dont even know what its used for

I had the simular thing happen with the bladder infection. I choose to take a quinolone antibiotic avelox because it is both anti gram negative( those bacteria that cause bladder infectionsi) and also anti chlamydmial. I also took cranberry tablets. I switched from bottled water to only drinking pure cranberry juice and I also took a supplement called D mannose. When I first had this bladder infection Nitrofurantoin ( here its called macrobid) seemed to work but when i discontinued it, the infection came back so if this happens to you you could maybe consider  levaquin or avelox as well.

Check out the d mannose though, I used it this time around and it made a super huge difference.. it prevents bacteria from sticking to the bladder wall. I think I actually beat the infection this time.

Why do I think this happened? Well my opinion in my case anyway would be because with cpni we would probably get overgrowth of other flora bacterias ( all kinds ) but then when we take the zithromax, doxyi and metroi abx they works to decrease the load of everything except those other kinds of bugs that commonly cause bladder and intestinal infections, so they get a chance to grow when the other flora is killed that they are living symbiotically with. Thats only my opinion though, there is also the fact that cpn probably lives in your or my bladder as well.

Try the D mannose though, its great!

 

 

 

 

 

&nbs

Clammed, thanks for taking

Clammed, thanks for taking the time to respond.... I have been on this protocol for over a year now... first time in about 1 1/2 years time, I've had a bladder infection. Yes, probably due to lowered immunity and an imbalance of the flora (probiotics) in my body and the CPNi since I had just done a pulse 3 weeks ago. 

The Clindesse is an intravaginal antibiotic used for bacterial vaginosis.  I researched it but was unable to find what the absorption rate (vaginally) is or how the antibiotic may affect/effect CPN.  I know Metroi-gel (another ABXi for similar female problems) does affect CPN.  I  decided to NOT use the Clindesse as I didn't want to add another antibiotic to my mix.  The BV is not a major issue at this time.... no pain or even symptoms... was just "discovered" upon routine exam and testing.

I've been/done the cranberry juice and herbal route, before I went to the doctor (I USED to get UTIi's very frequently BEFORE capi), but thank you for the suggestions. Also, thanks for reminding me about D-Mannose -- I totally forgot about it. 

Yes, it seems the CPN

Just an aside -- I will NEVER (unless it's a life or death situation) take another fluoroquinoline... I am happy they worked for you, but they are too dangerous IMOi and just posted a link in another area of conversation on the board.

Be well!

Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, 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

Jeanne-i really sorry to

Jeanne-i really sorry to hear your story with fluoroquinolines. It can cause really dangerous effects to many, actually it did to a friend of mine as well and i know all those horror stories that it can cause. You can find all over on internet. However it saved my life a couple of times. Maybe I am the one who can tolerate it and it should be really used in case of emergency but i do thank a lot to several fluoroquinolines.
doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

LouiseCFS/ME.CPnPositive.BbPo

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

Jeanne, I had a cough after

Jeanne, I had a cough after my early Feb pulse.  I though that it was coincidence at first but it took so long to clear taht I began to think that I might have stirred up some old news from the eary 1990's when I would say that I likely had walking pneumonia that I toughed out ( for the good of the CPni in residence)!

Perhaps another pulse of longer duration might rid you  lungs of those criers.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full 5 day5 TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

Jim, Ruthie, Louise..

Jim, Ruthie, Louise.. Thank you for your thoughts and comments. Yah, trying to figure out if this is pulse reaction is a bit difficult....

I guess I'll just chalk it up to a culmination of everything hitting.  (The bladder infection, the BV all could be attributed to low immunity, unbalanced flora and CPNi.)

The gut pain, yes, porphyriai, but also, my colonoscopy in March did indicate a "strange infection" (was not stated past or present) in the splenic flexure area... so it may be acting up after my pulse, the additional antibiotic and the glutathione push.

What's more strange is that I have started coughing again.... deep coughs like when I first got sick... the benedryl seems to help that... it's almost like my asthmatic/allergy behavior before discovering I had CPN... so obviously it's kicking up a fuss in my lungs!

Louise,I was tested for porphyria last year, but you're right, it's probably wise to be tested again as things have  changed alot since then, so I will see about a stool sample.  The symtoms kind of tell me that it's porphyria though.

Jim, I didn't know Nitrofurtanoin worked on the cryptic form -- eek!! I requested IT instead of Amoxicillini (500 mg 3x/day) as I thought THAT would be worse for me with the doxyi/Azith. I did not stop the Azith/doxy...

Ruthie, I will try the Inositol ....I believe the Nitrofurantoin is helping as the bladder discomfort is going away... I only have 2 more days on that antibiotic.

I have gone back and reread the herx as well as the porpyria lists many times... and it probably is creeping porphyria -- as well as die off from the Glutathione shot. I also read that HHV-6 can cause intestional problems....?. I will continue to keep increased doses of Vit C and Chorella... I have a hard time working in Charcoal because of the timing... but may try to get some in tonight! 

Also, Jim,.... what you stated in a previous post on porphyria rings true: ".......: the more porphyric we are, the less clear it is that it is porphyria causing a lot of our reactions. It's easy to attribute it to "herx" and other things so that you don't realize how much is building up in your tissues just from killing the bug."

Thanks guys for your thoughts and input! :)

Jeanneroz 

Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxy daily & 250 mg AZITH M/W/F, 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

Jeanne, I have the same post

Jeanne, I have the same post pulse limit of about 15 day range as Ruthless is sharing.  Seems a bit late for post pulse to be the causitive fact or for your distress.  However, porphoria as it is creeping up in circulating level (creeping porphoria, per Michele's experience) could be impacting you.  It also is a component of anxiety and depression for some folks, including myself I believe.  I am traveling now, and will not have computer access until late tonight.   Do more moppers as Rutlhless suggested.

I suggest that you re-read the list of complaints atributable to Phorphoria, gut pain is right there.  It is also a major symptom of primary porphoria, some of which forms of the condition does not show up until the late 40's or 50's from my investgation.  

Any chance that you can convince you provider ( one of them) to do the stool and urine screening tests.  You have been in the hospital for stomach-gut pain so seems it might be worth the investigation.   If it turns out to be true you may be able to get feeling weller faster.  Just my humble opinion and intuition.

Blessing to you,

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

well, I am glad you had the

well, I am glad you had the bladder diagnosed, you had mentioned there might be an infection coming!  In my 40's I had a whole year, one bladder infection after another!  Damn CPni!

Keep up the moppers & increase them if you can.  Have you tried Inositol for these times when you are depressed.

Like JimK says, there is alot going on all at once!  My longest reaction post pulse was about day 15.  We are all different, so for you, it could be to day 21!  Hold off on pulse 2 until the bladder clears up!

Rest, you are in my prayers.  It is going to get better.

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpn, 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#9 750mg 5.5 day, 4-25-8

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<

Boy oh boy, it's really

Boy oh boy, it's really tough to sort out when everything is hitting at once. Glad you got the bladder infection diagnosed, but you could be getting post-pulse on top of it. Yikes! Glutathione probably potentiates some die-off since it is anti-chlamydial, as is nitrofurantoin (against cryptic, although it doesn't stay long in the blood stream). I'm betting that the Vit C and chlorella, maybe some charcoal if you can tolerate it, will help or at least give you an indication as to what's what. Hang in there. 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral