Cpnhelp.org

just wondering aboutyour title (caffiene pills, etc?)  I I take caffiene pills like excedrine I get worse. Ill pray for you. I was getting better but 2 weeks ago I think another organism grabed hold of me. becuase ive been really sick for the last 2 weeks. Its a hard battle for us. Sometimes I wish I would just die in my sleep and end the pain and suffering. but we have to keep on trucken. God is on our side. God Bless.

Lee

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Fibro, CFSⁱ,  Myco, CPNⁱ, Stratton protocol, Zithro 500mg M/W/F/S, Doxyⁱ 100mg 2x day, NACⁱ 1200mg 2x day, Flagylⁱ and INHⁱ 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day,  Still cant shake it but improving.

Sorry about that, Lee.

Doctor is writing paper on use of caffeine

Thus, the caffeine heading. I forgot to mention its relevance in posting.The caffeine is over the counter, like a no doze pill. Think lots of students are using it to stay awake. Figure that one out?

Praying for you, especially for your biopsy tomorrow- lymphoma, be gone! ! 

Keep on trucking and spirituality are so imperative!

Thanks

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diagnosed MSⁱ Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyⁱ 100 mg. 1BID. roxyⁱ.150 mg.? BIDⁱ,adding rifampin soon, pulsed tiniⁱ. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNⁱ),NACⁱ, nystatin, major wheldon supplemrnts daily,

loulou          

I pop caffeine pills all day.  It keeps me going and without them, I'd be napping off and on all day, I'm sure.  I do on occasion on weekends.

I've mentioned the Sine wave that I go through every day.  The caffeine helps me throughout that ever day.

1. 5:30 a.m. - wake up, pop a caffeine pill (200mg)
2. 8:30 a.m. - mid morning, need the caffeine to keep going, another pill
3. 11:00 a.m. - approaching lunch and I know I'll need caffeine after lunch to stay altert, another pill
4. 11:30 a.m. - immediately before lunch, take another pill
5. 2:30 p.m. - need a boost and lunch has settled enough, take another pill
6. 4:30 p.m. - time to drive home, take another pill
7. 7 p.m. - too early to get sleepy, take another pill

So on average, that's a regular work day, along with abxⁱ and supplementsⁱ.  1400mg/day of caffeine.  The little yellow pill.  I take so many pills and capsules, it really sucks!  But it's keeping me going.

I got a blood test here about a week ago to check for hormone insufficiency...testosterone, cortisol, and dhea levels.  You may want to get a similar test because my understanding from what I've been told by others here is that it is common for there to be an adrenal drain when you have a chronic infection like Cpnⁱ.  Get checked, it doesn't take long.

Here's a link to the discussion where we talked about this...

http://www.cpnhelp.org/how_many_men_out_there_wi#comment-50083

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best, John

RRMSⁱ/EDSSⁱ was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (nacⁱ, doxycycline, azithromycin, metronidazoleⁱ) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHⁱ 300mg/daily 03/17/2008 stopped 05/08. Added

John, you might like to investigate Guarana Seed 22% Extract, there is some information about it at www.wholehealth.com website.  It peeks more gradually and lasts up to 6 hours.  It seems smoother than cafeine for me and on mornings that I need a little wake-up lift I take it with some herbal tea.  I found it when going to order D-Ribose, and other supplementsⁱ on the Wheldon List.   I have also found their Green Tea Extract with 50% Polyphenols to be a nice addition to the afternoon "Tea Time".

Let us know if you try either of these and if the work as well or better than cafeine, I know they do for me.   Louise

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6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin

As a follow up to original posting - caffeine heading, Istopped charcoal supplementation ,once again.

As bad as I am, it definitely seemed like charcoal was making it all worse.

Once again, I'll have to see what happens?

Has anyone else had similar experience- probably from charcoal ,based on timing but not even sure, at this point? 

Hope for responses?

Loulou

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diagnosed MSⁱ Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyⁱ 100 mg. 1BID. roxyⁱ.150 mg.? BIDⁱ,adding rifampin soon, pulsed tiniⁱ. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNⁱ),NACⁱ, nystatin, major wheldon supplemrnts daily,

Louise         

Thanks for the tip.  I occasionally get some Guarana through a bottle of Vitamin Water I might drink in the afternoon.  I've had it in the past and haven't gotten the kind of lift from you you're talking about.  It may be that with all the caffeine, I can't tell.  I might give it a try.

Also, you mentioned the herbal tea.  I'm a big fan of green tea myself but given the possibility that it may contain something that's a 5-Lox inhibitor, you might want to be careful of teas.  I've stopped them for that very reason.

You should check out Red's vitamin Dⁱ book, I'm sure he mentions somewhere about teas.

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best, John

RRMSⁱ/EDSSⁱ was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (nacⁱ, doxycycline, azithromycin, metronidazoleⁱ) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHⁱ 300mg/daily 03/17/2008 stopped 05/08. Added

John, the Guarana Seed 22% Extract is a concentrate not the ground seeds so check the amount in your water which is likely not standardized.  The same is true for the Green Tea extract it is not a tea per say.  If I took the amount of cafeine that you are describing I would be having tachycardia!   I find the Guarana seed 22% extract a smooth lift in the morning.

I would be more concerned about over stimulating my adrenals with that much caffeine that I would be about potential Lox 5 inhibition from a modest use of the extracts.   Louise

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6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin

Hi Louise,

Wish you wouldn't have posted your info there?

Now, my last comment on my post has been upstaged? Perhaps, you can fix it? I hope so.

Maybe, separate post for guarana seed extract??? Thanks

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diagnosed MSⁱ Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyⁱ 100 mg. 1BID. roxyⁱ.150 mg.? BIDⁱ,adding rifampin soon, pulsed tiniⁱ. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNⁱ),NACⁱ, nystatin, major wheldon supplemrnts daily,

Loulou, Perhaps you could ask your doctor if he knows about the Guarana seed extract, it does contain Caffeine and is standardized to 22%.  Also the duration of coverage is longer 4 to 6 hours.  I found the supplement quite by accident and find it smooth and effective in supporting energy, cognition and relatively smoother than coffee.

Also, although I don't understand your suggestion, the past posts in your blog are closed to editing at this point, the edit function is no longer available to alter past entries.   

The only suggestion that I have is that since it is in your blog you can erase the entire blog and start again if my general suggestion regarding the relationship of Guarana Seed Extract 22% as being another effective source of caffeine troubles you and causes you concerns.   

Regarding Charcoal I found it not very effective for myself and chose cholystyramine, however I have found that ChitosanHD from www.wholehealth.com to be effective for porphyrin level reduction.  I do hope that you find some source of improvement since charcoal seems to be difficult for you at this time.

Blessings to you Loulou,    Louise

___________________________________________________________

6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin