Reenie, I will be looking for your blog updates! 

 Louise, CFSi [8]. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi [6],Doxyi [9], Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini [10] Die-OffExperiences.

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Louise  CFSi [8], CPN+/Bb+,Wheldon CAPi [11] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [12] & Endotoxinsi [13] PRN, Doxyi [9] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Louise,

Thanks for keeping an eye on me.

How long did you use doxyi [9] before adding a second abxi [15]? I see where it says until "well tolerated" and I feel like I'm tolerating the minoi [1] well but since I know there are two processes that happen when you use bacteriostatic abxi [16]:

1. Taking mino (or doxy) daily may give some symptomatic relief.

2. It takes a little time before the bacteria begin to weaken and die off.

I'm hoping that the 3+ yrs I spent on the MP will have helped eradicate something enough to make the CAPi [11] smooth sailing!

It would be great (and wishful thinking) if the reasons I relapsed were that I wasn't getting enough immunei [17] system function from lack of D and other supplementsi [18] and that I actually DID get rid of alot of the infection.

Well, I'm sure it's way too soon to tell but so far, so good. And of course I was experiencing some die off and porphyrian symptoms by adding NACi [6], the supplementsi [19] and iodine already as well!

3/08 NAC 2400 mg, 4/08 Iodoral 25 mg, 5/08 mino 100mg, myco+ CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addison's

When I change what I believe I change what I do

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NACi [6] 2.4g, Zithi [2] 250mg/MWF, minoi [1] 200mg, Tinii [7] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addisons

Don't believe everything you think!  

Hello Reenie

How long were you well before the relapse? What percentage of healing did you achieve?

thanks

Brian 

Reenie, I happened upon CPni [21] treatment without any knowledge of this CAPi [11].  So I started into treatment in much the wrong way.  And I was slammed with overload of toxins and porphoria as I was Rxed a kill level dose of doxyi [9] as opposed to the antireplicant level dosage of 200 mg per day.  Lyme literate Folks that I knew thought it was an appropriate amount for mono abxi [15] Lyme tx so I marched right into the battle! 

Reenie, I started a blog, see if you can find it.   I think that it has some of the early details of my adventures. 

If I could do it again I would follow the Wheldon Protocol from the start at this point to the letter.  Now I am one to caution folks that get impatient and want to hurry to the finish line to slow down to that turtle pace, because I do know how bad this healing can make one feel in the process and the cognitive impairment that can result.   It also was very inflamatory for my liver.   So I believe in the moderate approach unless you have an aggressive neuroi [22] disease and then of course you weigh the odds and dive in. 

What I wanted to ask is are you at 200 mg of minocycline now?  I know there are several ways to approach working into the protocol.  I might decide to get onto to minocycline completely at first if it was easy for me.  Then slowly add the azythro over the course of a few weeks to max depending on the effect it had on me.   It could be several months on both before the die off starts, from my observations of posting on this website, seems that is a mile stone for folks to begin to have porphoria symptoms if they are going to have them.  Just some of my thoughts.

Glad that you are working onto the program, welcome to the healing journey. 

Louise

CFSi [8]i [23]. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi [6],Doxyi [9], Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini [10]i [24] Die-OffExperiences.

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Louise  CFSi [8], CPN+/Bb+,Wheldon CAPi [11] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [12] & Endotoxinsi [13] PRN, Doxyi [9] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Brian,

I would say I was about 70-80% mostly, for about a good solid 6 months before the downhill turn I call relapse.  Then, as the fall weather began, I declined pretty rapidly as I know others did almost at the same time I did.  I believe the darker weather and my extremely vulnerable immunei [17] system with my low D levels played a part in that as it probably did for the others.   

3/08 NACi [6] 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi [1] 100mg, myco+ CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addison's

When I change what I believe I change what I do

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NACi [6] 2.4g, Zithi [2] 250mg/MWF, minoi [1] 200mg, Tinii [7] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addisons

Don't believe everything you think!  

Louise,

I believe I'm having some minor (repeat) symptoms of die-off or porphyriai [12] which I treated before starting the mino.  IMOi [27], it's either as a result of increasing sun exposure again or possibly from adding the abxi [15] so will monitor and treat before changing anything or adding anything new, more or different.  

I'm very comfy with the turtle pace and always proceed with caution.  It's much better to go too slowly than too quickly, yes. 

I am really wanting to add a second abxi [16] as in the way the Wheldon Protocol  outlines ramping rather than stepping up the mino to full dose.  I would think he has a reason for doing so and since I began the CAPi [11] according to that plan, I would like to stick with his strategy for adding Z.  

If anyone else would have any thoughts, please share by all means.  TIA

3/08 NACi [6] 2400 mg, 4/08 Iodoral 25 mg, 5/08 mino 100mg, myco+ CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addison's

When I change what I believe I change what I do

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NACi [6] 2.4g, Zithi [2] 250mg/MWF, minoi [1] 200mg, Tinii [7] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addisons

Don't believe everything you think!  

Today is day 8 of minoi [1], 100 mg.  I've had some increase in bowel symptoms which I believe are porphyric/die off as well as a headache similar to migraine for the past two days which resolved with charcoal, vit c and ibuprofen.  

The UV index is 12 here today.   I had no idea it went higher than 10. 

Since I would like to try to go on a ride tomorrow and am not sure if I have porphyrian sxs from the sun, I'll sit outside today and assess.  If I have an issue with the heat/light at home, better not to go on a ride although they are going north and it will be a little cooler.  

I will wait until after any riding this weekend to begin the Zithi [2].  After all, what are turtles for? 

 

 

3/08 NACi [6] 2400 mg, 4/08 Iodoral 25 mg, 5/08 mino 100mg, myco+ CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addison's

When I change what I believe I change what I do

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NACi [6] 2.4g, Zithi [2] 250mg/MWF, minoi [1] 200mg, Tinii [7] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addisons

Don't believe everything you think!  

B6 lessens vertigo w/ minoi [1] - if that is an issue - I don't know how much, though and the B vitaminsi [19] should not get to far out of balance from one another.   Sorry for type variety.  

 

 http://tinyurl.com/3xpvck [28]

 (or through PubMed at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi  ) [29]

 

Arzneimittelforschung. [30] 1988 Mar;38(3):396-9.

ANTIVERTIGINOUS ACTION OF B-6 ON EXPERIMENTAL MINOCYLINE-INDUCED VERTIGO IN MAN [31]

[Article in German]

Claussen CF [32], Claussen E [33].

Neurootologie, Universitäts-HNO-Klinik Würzburg.

 

By means of a former investigation it has been proved equilibriometrically that the application of 7 X 100 mg minocycline may induce a central equilibrium dysregulation of the brainstem type.

It was the purpose of this study to further assure that the minocycline induced brainstem vertigo is due to a destabilization of a supervisory gamma-aminobutyric acid (GABA)ergic loop from the archeocerebellum upon the pontomedullary vestibular regulating pathways.

 

As it is pharmacologically known that pyridoxine is essential for the synthesis of GABA, an inhibitory CNSi [34] neurotransmitter, 2 separate double blind trials on 20 healthy young persons each were carried out after the intake of 7 X 100 mg minocycline during 3 days with and without 7 X 40 mg pyridoxine simultaneously.

 

These trials were checked against an additional placebo or initial non drug investigation. In all the 40 test persons it could be proved that the amount of vertigo and nausea symptoms was increased significantly due to the application of minocycline only.

 

However, when combining minocycline with vitamin B 6, the vertigo and nausea symptoms as well as the nystagmus signs from the monaural and the binaural vestibular ocular tests as well as the vestibular spinal signs from the craniocorpography recordings of the stepping and the standing procedures were remarkably reduced.

 

There were no statistical differences between the initial or placebo trials versus the trials with a combination of minocycline with vitamin B 6.

The same holds for the vestibular vegetative reactions, measured by the simultaneous electrocardiography during the vestibular tests. All the equilibriometric tests applied showed a significant destabilization under the influence of a pure minocycline loading

 

UTPMID: 3382463 [PubMed - indexed for MEDLINE]

 

 

 

 

Keebler,

I know some folks who really could have used that info on the MPi [36] that suffered horrible, miserable vertigo, but it's moot now.

I take B complex and some separate B-12 injections and sublingual and niacini [37].

I was outside today in the pool in the sun with a hat on and I think I'm ok so far so all good. Hopefully I'll feel rested enough tomorrow to go on that ride.

3/08 NACi [6] 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi [1] 100mg, myco+ CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addison's

When I change what I believe I change what I do

___________________________________________________________

NACi [6] 2.4g, Zithi [2] 250mg/MWF, minoi [1] 200mg, Tinii [7] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addisons

Don't believe everything you think!  

Reenie, I'll keep my fingers crossed for you. I started azithromycin and doxyi [9] at the same time and had no ill effects, so add your second med when you feel good enough to do it. SO happy for you!

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

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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

Mac,

Thanks, I'm planning on starting the first dose of Z on Monday. How many Z tabs did you take when you started and did you take the full dose of doxyi [9] too?

BTW, I went on that ride today. It was a little longer than I had anticipated but ALL GOOD.

I'm noticing a little of the bowel sxs back which I attribute to secondary porphyriai [39]. I'll take more charcoal later tonight and some Emergen C now.  It's so nice to understand what's happening and how to treat it.

Can anyone tell me why I can't increase my niacini [37] beyond the 100 mg dose? I flush ALOT when I take it and for about an hr. I've only had a few occasions when I haven't flushed but usually I do.

How does one work up the dose of the niacin?

3/08 NACi [6] 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi [1] 100mg, myco+ CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addison's

When I change what I believe I change what I do

___________________________________________________________

NACi [6] 2.4g, Zithi [2] 250mg/MWF, minoi [1] 200mg, Tinii [7] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [3]/FMSi [4], Hashimoto's, Psoriasis, PA, IBSi [5], Secondary Addisons

Don't believe everything you think!