Bumped up to 200 mg of Doxy and Azith, tension mounting!

SPMSi [3]i [3]< Supplementsi [4]i [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6]i [6] 1500 mg x 3 days once per month

SPMS< Supplementsii & NACi,

Submitted by Todybear on Sun, 2008-06-15 09:18.

SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 3 days once per month

TB, I remember you saying [7]

Submitted by Sarah on Sun, 2008-06-15 10:28.

TB, I remember you saying before you had even started this that your husband fully supported what you are doing, partly I think, because he wanted the real you back. Well, I don't know what you were like before, but don't tell me you never argued. Now, though, he can see you coming back but he is frightened because he can't yet quite believe it yet. I guess he was frightened when he saw you becoming the meek,quiet little thing that the progression of your MSi [8] was making you, now you are changing again but as yet he doesn't know quite what to make of it all.

David was angry and frustrated for years before I started CAPi [9], then for a while after. I didn't know what to make of this and thought he was getting fed up with me, but this was not the case: he has admitted he was frightened. Now we are the best of friends again.

It would be a good idea to take measures against secondary porphyriai [10], though and one of the quickest acting things, part from charcoal is glucose, which you can eat as glucose tablets or American Smarties, or even better glucose (dextrose) powder which you dissolve in the water which is also a very necessary thing. Order some from here [11]............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [12] was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [8] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [12] was 7, now 2, less on a good day.

Sarah it's so confusing to

Submitted by Todybear on Sun, 2008-06-15 11:11.

Sarah it's so confusing to feel more energy and less pain and be so upset about it. It makes me really wonder what is happening in the brain that is making me feel so odd. My husband was the one that wanted me to go on this therapy and was the one pushing me to read and learn all about it all. I warned him about all the possible effects of the dieoff process, but it is like he was and is in denial that this would change me for the "not so good" for awhile. I need the support that only he can give but I feel like he is getting more an more in to his hobbies and regressing further and further from standing with me in this. I guess he wants me to smarten up. I would love to. I would love to feel calm, content and cooperative, but instead I feel anxious, aggitated, angry and aggressive. I take the glucose and it seems to combat the nausea but not the emotional nasties. Maybe the powder would work better. Thanks for listening.

SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 100 mg, Azith 250 mg 3X/wk

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 3 days once per month

TB, It's natural that you [13]

Submitted by Sarah on Sun, 2008-06-15 11:47.

TB, It's natural that you should feel this way: there are people who have come to see DW who have ended up giving up because they didn't like feeling like this, when they feel in one way they are getting better but in another way they feel so exposed and preferred to live in the protective mist of euphoria which had previously cloaked them. I know: I felt like this, but I managed to pull through it partly because David wouldn't have let me give up and partly because I was regaining things I had only just realised I would have lost forever if I hadn't done this. Very different from the person who stumbled along to the MRI suite complaining that she didn't need this, it was a waste of time and besides, she was getting better.

Tell your husband this, or let him read it and you might even find that things aren't the way you think at all...........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [8] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [12] was 7, now 2, less on a good day.

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TB, Your husband is [14]

Submitted by katman on Mon, 2008-06-16 10:52.

TB, Your husband is heading for the list of heroic caretakers. They have earned their place on that list and are there for good reason. We, the _______, who are taken care OF, need it for a reason. Simply put, we are nuts. This bug sends us up. down, around the bend and into the fog, but mostly it just wears us out. It is a long, slow return and requires tremendous patience, indulgence, and self-discipline on everyone's part, but eventually we come out ahead. Sometimes it seems just barely ahead, then we disappear again and come bobbing to the surface again downstream. Certainly the self-control is in very short supply at times, but it does come.

Rica PPMSi [15] EDSSi [12] 6.7 at beginning - now 2. Began CAPi [9] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [1] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [6] total 51 pulses NC USA

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Todybear, When I was like [17]

Submitted by kitkat2 on Mon, 2008-06-16 18:07.

Todybear, When I was like you describe, I doubled my fish oil intake[Omega 3's]. It helped a lot. kk2

[Doxyi [1], ~~Azith~~, Biaxin and Flagyli [6]] for rrmsi [18] since October '05. Added Amoxicillini [19] 1gm twice daily and LDNi [16] 4.5mg qhs October '07; Added Inositol[1gm] and ~~Calcium Pyruvate[4-6gm]~~ daily February '08, EDSSi [12] was 6

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Wheldon Protocol for rrmsi [18] since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi [20]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Todybear- I know just what

Submitted by Jim K on Mon, 2008-06-16 19:45.

Todybear- I know just what you are talking about. I wish back then I knew what I knew now about porphyriai [21]. "instead I feel anxious, aggitated, angry and aggressive. I take the glucose and it seems to combat the nausea but not the emotional nasties..." means that it's not all the current production of porphyrins (which the glucose stops in the liver) but also the release of cellular stores. So you need to increase your "mopper-uppers" like charcoal or cholestyramine too. Otherwise it just gets reabsorbed and your levels grow.

CAPi [9] for Cpni [22] 11/04. Dx: 25yrs CFSi [23] & FMSi [24]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [25] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [9] for Cpni [22] 11/04. Dx: 25yrs CFSi [23] & FMSi [24]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [25] 1000mg/day pulses; Vit D2000 units, T4 & T3

Todybear, I go with Jim's

Submitted by Louise on Mon, 2008-06-16 20:43.

Todybear, I go with Jim's suggestion that you may now be experiencing increased levels of porphyrins from the release of cellular stores. I take Cholestyramine as noted in my signature to get the level down when it rises from time to time.

I do know about the irritability that comes up as passivity begins to fade away. Many of us have been there.

I would try the high dosages of charcoal or cholestyramine consistently for a few weeks. I was amazed at the effectiveness of cholestyramine for my situtation. It really cleared it out dramatically for me.

Louise USA.CFSi [23].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [5],Doxyi [1],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [26].

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Louise CFSi [23], CPN+/Bb+,Wheldon CAPi [9] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [21] & Endotoxinsi [26] PRN, Doxyi [1] 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

sounds like you have been

Submitted by ruthless1 on Tue, 2008-06-17 00:18.

sounds like you have been offical inducted to the Troll Hall of Fame. I am the Queen, jeanneroz is the princess; so you will have to decide if you are the King or ?

Seriously though, I had a major meltdown that involved a spat with my mother in law who has given me a really hard time from the get go & a ticked off husband for the fall out last Thanksgiving, October here in Canada.

Now we are really familiar with this sneaking up & I notice now when it starts. I don't go anywhere without a packed of Emergen C & glucose in the form of Smarties candy for that just in case timing.

Patch things up, explain what you can; it is not your fault. We kind of think it is almost turrettes like & when I was arguing with my MIL, I thought "who the heck is saying this stuff coming out of my mouth". She sort of had it coming, but I would have much preferred to have turned the other cheek & avoided the drama

Onward & upward!

CFIDSi [27]/ME 32 yrs, FMSi [24], ~~IBSi [28]~~, EBVi [29], CMV, Cpni [22], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [5] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#11 1000 mg 5 days 6-14-08

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CFIDSi [27]/ME 32 yrs, FMSi [24], ~~IBSi [28]~~, EBVi [29], CMV, Cpni [22], 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

Hubby and I had a scrap or

Submitted by Todybear on Tue, 2008-06-17 08:45.

Hubby and I had a scrap or two, then he brought me flowers and weeded my huge garden. Sound like a peace offering? He has been really understanding since I told him how I felt about what is happening. It's not fun at all. I don't enjoy sharing my body with an evil twin lurking inside me but I have to figure out how to beat her into submission. He knows that keeping up my responsibilities is very important to me and that I am still doing it with the headaches, nausea and variety of other nasties. I think that it is all wearing on us both. He's gone fishing today with my dad and my 16 year old daughter. He needs to take the time to look after himself and not let my illness get him nasty too. Anyways, thanks for listening. You guys are a blessing.

SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 3 days once per month

Todybear, Aside from the [30]

Submitted by Reenie on Tue, 2008-06-17 10:28.

Todybear,

Aside from the good advice you've received here on the secondary porphyriai [10] management, which is so important for you to treat...

As an outsider reading your posts in this thread I can see both sides. First off, men deal differently with their emotions than women do, which I'm sure you already know but it doesn't hurt to have a friendly reminder.

You say, I need the support that only he can give but I feel like he is getting more an more in to his hobbies and regressing further and further from standing with me in this. I guess he wants me to smarten up.'

I read that to say "I'm feeling scared and confused on top of not feeling like I'm in charge of my emotions and I feel my hubby is spending less time taking care of me and more time doing what he wants to do which doesn't revolve around me and my illness."

That sounds like you also are on an emotional roller coaster ride while your hubby is trying to deal the best he can. I think you'll both be fine as long as you're aware of what's happening, which you are, and maybe help your hubby to understand (sometimes this works best without actually having a conversation about it) and allow him to deal with it in his own way too.

But then in a later post you say, He needs to take the time to look after himself and not let my illness get him nasty too.

Which says to me that although you're missing his being there to help you, you KNOW inside he needs to deal with your recovery in ways that he takes care of himself too and one way might be for him to be around you less especially when you're being what ruthless labels troll queen behavior. This sounds confusing to you and I'm sure it is to your hubby too.

As an old friend used to say, "Be good to yourself"

Oh yeah, and maybe you'll need to slow down a little? Maybe it's not quite time yet to be on all of the full doses of abxi [2]? And I would definitely caution you from starting pulses until you have this situation (secondary porphyria sxs) under control!

3/08 NACi [5] 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi [31] 100mg, 6/08 Zithi [32] 250mg MWF, myco+ CFIDSi [27]/FMSi [24], Hashimoto's, Psoriasis, PA, IBSi [28], Secondary Addisons

When I change what I believe I change what I do

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NACi [5] 2.4g, Zithi [32] 250mg/MWF, minoi [31] 200mg, Tinii [25] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [27]/FMSi [24], Hashimoto's, Psoriasis, PA, IBSi [28], Secondary Addisons

Don't believe everything you think!

Tody... comming from a mans

Submitted by chuck on Tue, 2008-06-17 10:47.

Tody... comming from a mans point of view...watching your family get sick is one of the most heart renching things a person has to go through ... I remember my wife saying to me how she felt I was getting so distant from the family and she thought I didnt care ! ...She was so wrong ...I just got to the point where I couldnt cope watching my family fall ill to this disease..I would spend a lot of time out and about simply because it was the only way I could give my mind some time to heal...I would drive up to a view point and cry my eyes out praying to God to find an answer to our problems .... You just need to talk to you hubby and reasure him that you are going to come through this and no matter what happens we are doing what we need to do ! ...chuck

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treating reiters syndrome, cronic fatigue, heart symptoms, myalgia symptoms, started with doxcycline 200mg and rifampin 300mg in jan 15/05. switched to doxyi [1] 200mg and azithromycin 250mg m.w.f in sept 06. after being on abxi [2] for two years now doctors dont t

Reenie, Chuck, Ruthless, I

Submitted by Todybear on Tue, 2008-06-17 16:20.

Reenie, Chuck, Ruthless, I appreciate your advice. Reenie you are good to be candid, so many ppl are afraid to do that. You are right about being afraid. I hide it well from my family. They think I am just angry but I am very frightened in some ways cause I am feeling new and scarey feelings. I am going to give every effort to allowing my husband to care for himself but I do like to be pampered and that is just the truth. I need to let him deal with this his own way. Thanks for pointing out the spoiled kid in me. I see that I get scared when he backs off but as Chuck pointed out, it's not fun being around someone you love when they are ill. I may not be the troll queen, but I might just be the Dutchess.

SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 3 days once per month