Hi Janie,

I'm so sorry to read your post but I can totally relate.  I was feeling much better yesterday and earlier and now I'm back in a terrible slump. (the way I've felt for the past month)  It ain't easy being us, is it? 

Chris Knight - "It Ain't Easy Being Me"

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Janie, Maybe it's the 400mg of doxyi, rather than the 200mg the protocol normally calls for?   I'm thinking of the couple of times I retched my lousy little 200mg of doxy and don't know if I'd have tolerated 400mg/day all that well.

Anyway, three days is a good pulse. Don't knock it. And you do get past that 'living for the meds' feeling. The first few weeks, I went mad and obsessed over sorting them out, parceling them into doses, setting an alarm to take them on time. Then, resignation, as in 'okay, this is my life for the foreseeable future'. Then... ta-da... blessed apathy. Sort them, take them, on with the next thing. No big deal. It'll sneak up on you and you'll be pleasantly surprised when you realize it one day.

 You ARE incredibly strong to be doing this and don't let anyone tell you any different. We all are. And we'll all be stronger than ever when we come out the other end of this tunnel.

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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

Yes, Janie! You ARE strong and determined, and you see that part of this is pulse-induced. You will come out of it and be that much further down this road.

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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 55 pulses LDNi Rifampin 8/08 again NC USA

Doxyi 400mg a day is a large dose.   I'm not exactly sure why you are taking that much, you do mention Lyme; but as with any of this treatment trying to go faster than your body can cope with is counter productive. 

However a three day pulse is not to be sneezed at.   I still only manage three days at times.   And I have done 40 of them.   Sometime Flagyli makes people feel really sad, it passes.

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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

Hey Jenie, i dont wanna be very smart here since i am not, but 400 sounds quite huge dose to me as well. I understand why you are doing it as doxyi becomes a killer on that level but i am just asking...didn't the original protocol work for you? I mean as i take the 200mg doxy and 250mg of azith they maybe are not an effective killing method but if i wish a nasty killing period which hits me to the ground0 i do a strong flagyli pulse. Sometimes as long as 7-10 days. it can be quite hard but then i feel the bastard is really being killed.

I treat porph. a lot after that which makes me feel so much better to get ready to the next turn. I can tell ya that it becomes soooo much easier for each pulse for me. the next is always a bit easier than the previous. This makes me feel so good, and i have a feeling one day i wont really react to pulses either. Then i just need to finish the bugs for good and live my life hapilly :))))

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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

Janie, your signature says you have MSi and a positive C Pn antibody titre, so why not treat for that and cut back on the 400 mg doxyi?  At the moment you are being a masochist when you don't even know if you have something which might possibly benefit from the larger dose but I know of people who have got better from the smaller dose. 

Three days is fine for a pulse, though, so you should be congratulated on that...............Sarah

An Itinerary in Light and Shadow

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Janie, you are a fighter. I am still learning as I go with the help of great research from our friends here a cpni. Your blogs and comments from the start have been a tough battle and we all can feel your pain. I like to refer to the patient stores to help me through the bad days ,and it reminds me what we all are after, HEALTH.

As for myself ,I can see little improvements and it keeps my focused on what I once was. Next blog I hope to read from you is, I made it! and you too will be a patient story of survival. 

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.

Well, of course i didnt mean here to push yourself into a hard long pulse if you cant tolerate more than 3 days...i am just saying if you feel you are not doing enough on regular protocol you can CAREFULLY try what you can bear on pulses and that would be probably better than the HUGE dose of Doxyi....anyway. Its all theory you should do as your doctor prescribes and as you feel...

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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

Hey guys,

I have to take the 400 because I cant risk treatment failure if this is lyme, i just cant take the chance. Im not mentally strong enough to face another treatment failure. I'd crack up

In general I feel good on 400 doxyi, a little nausea but nothing annoying compared to that grawing facial pain I had. The problem is that with the metroi and then ofcourse the zithro, it might be too much for my liver. We will see what happens next pulse

I dont think its lyme, Its cpni w/dental anerobic synergy  but again I cant risk it.

Whats bothering me most though is the frozen state of my life. I cant handle it, being judged for not working because people assume that Im lazy or unmotivated or maybe even mentally ill. Its painful when you have it all bottled up and festering and  cant come right out and just tell people that you arent working because you have a chronic infection and are physically sick. I cant count how many people have been in my face about my state of unemployment, trying to motivate me thinking that Im just depressed or something. Can I hit them please?

Nobody would understand what it must be like for us anyway plus if somebody told me they had a chronic pneumoniae infection id run like hell, and even faster if it bore the name chlyamidia on it.

Anyway, thanks for listening. A lot of my problem is that this has gone on so long, I dont know how much more my psyche can handle. Does every psyche eventually have a breaking point or are some of us just permanently eternally resillient?

 

 

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBSi neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.

Janie, I've endured decades of being misunderstood. My parents are imbittered toward me because I quit working after they put me through school. They will never accept that I was too sick to work. My life collapsed into taking pills and conserving my energy. I want for you to have caught this awful infection at an early enough age so that you will get years and years of a normal and good life.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

I too have family and what's left of friends' issues.  My family thinks I'm off having fun when I'm too sick to call or check on them and their needs. Friends and med pros that simply don't get it think I need to get out more when I'm feeling "down."  

There are very few people other than my fellow sufferers of these dreadful diseasesi that seem to get it.  

And quite frankly, Janie, a virtual slap on the head is in order for anyone that gets in your way!

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Clammed, Yup, we're just a regular bunch of Pollyannas. (Actually, I am, by nature. I really believe and I'm an optimist caught in a pessimist's life.) You're right, though; there can be a 'breaking point'. So, if you end up in a little ball on the floor, doing the 'why me' song, you do. And it passes with time. You look around, hope nobody saw it, dust yourself off and dig your heels in and move on. It's what we have to do. So we DO it.

Reenie,  I keep that penquin clip at hand so I can send it to friends when they're down and depressed.  It never fails to cheer them up.   I don't know what it is about that clip. It's a little bit slapstick, a little sad, a little funny, a little goofy.... perfect.  Good choice!

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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 Janie, I am sad you are sad.  You are killing alot of critters & maybe you should increase your moppers even more yet.  Sometimes I take that Doxyi & I just want to hurl!  My last 3 pulses of flagyli have me nauseaus about 3 hrs or so after it courses through my body!

I understand that whole thing about being sick, chronically, for a long time.  This has been a tough year for me; 2 years off work & life.  Who would have thought I could have healed this much & still be sick.  My sanity has been tested so much.  I pray, one day, I will wake up & start really living again.  Then I will redecorate the house as I am quite sick of the decor after being here 24/7    Then, I shall save the world, hmmmpf!!

We are at war, take no prisoners or stow aways, all CPNi MUST DIE!

I hope you feel better soon.  Little by little, things improve.

Expect....the unexpected

 

peace

r

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08