Tody- From this and other posts you clearly have a pretty bad secondary porphyriai [7], which may be the main culprit in the mood reactions. This could also mean you have the liver infected as well as the liver is one of the main producers of hemei [8], and hence of porphyrins when it is compromised. Have you tried glucose in addition to the moppers? This is what saved me (and probably some of my family members) by cutting into the worst of the porphyria fits. Please tell your husband that this is a chemical reaction from killing the Cpni [9] and is likely not the MSi [2]. It might also help for him to communicate here on the site with others who are caretakers of people going through the CAPi [10]. Daisy, Cypriane and Sojourner come to mind as good resources for spouses of the "afflicted." I can certainly appreaciate your husband's sensitivity to these severe moods and irritability. It can help if a couple can sit not during the episodes, understand the phenomena they are dealing with as a chemical reaction, come up with a plan of steps to take that help both of you label it appropriately when one comes and try the countermeasures. It also helps to have a "time out" agreed upon that both of you can use, such as "I'm over the edge and need to take a time out until the glucose hits..." or "Honey, I need to take a time out from you until your reactions settle down..."

Porphyrins irritate a whole bunch of neurally related tissues, including nerves in the bladder as well as the brain. You might try gliSODin (from Swanson Vitaminsi [11] or Vitacost) as that has helped some of us counter the reactions to flagyli [1] pulses in terms of energy and the oxidation impact of the porphyrins. It seemed to improve my moods during pulses as well, early on.

And finally, I could not tolerate Flagyl because of the intense nausea. Tinidazole was much easier to take for me. It may be worth trying next pulse.

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CAPi [10] for Cpni [9] 11/04. Dx: 25yrs CFSi [12] & FMSi [13]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [14] 1000mg/day pulses; Vit D2000 units, T4 & T3

Hi TB,

so you have witnessed the wrath of the porphyriai [15] induced Troll.  Welcome to the club girl!!

I take ALOT more moppers than you are right now.  Please make a bigger effort to get this under control so you are ahead of the game, it is really important for the reasons you have mentioned. 

It is great news you are experiencing die off reactions!  Can you take the 12 caps of charcoal, have you tried yaeyama chlorella (I take 1 heaping tsp daily in my green juice with my morning vitaminsi [11]).  When I feel like my emotions are starting to get a bit wiggly I slam back 2 packets of Emergen C & or I will eat lots of glucose until it subsides.  I also take Chitosan regularly away from my B vitamins & the oils ones like D/E/Omega etc.  I take about 6 gms a day as it is a great fat absorber for the porphyria.  I also take minimum 5 gms of C a day.

If you play with these things more you will find the balance & JimK's suggestions are good for husband.  I had to do the same thing because when the Troll Queen appears "it ain't pretty!"

Things are going to improve, it just takes time & patience, something I have been learning.

Blessings for your journey!

r

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CFIDSi [16]/ME 32 yrs, FMSi [13], IBSi [17], EBVi [18], CMV, Cpni [9], 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

Hi Tody,

I also have experienced the extreme dark moods associated with flagyli [1].  Strangely the moodiness seems to hit me around 10-15 days after my last pulse, so it catches me off guard.  I find that if I tell my husband that I am feeling really emotionally off balance and that I think it is due to die off, he is more sensitive to me.  By the way, I am going at this really slowly.  I started my first pulse with 1 250mg flagyl.  My second pulse was 1 250mg flagyl 2 x day.  In have just started my 6th pulse today.  I plan on taking 1 250mg flagyl 3 x day for two days.  So far I have not been incapacited by the side effects or die off.  I hope eventually to work up to the full recommended pulse of 500mg 3 x day for seven days.  That is a ways off for me right now but I am content to go at this slowly.  At this point I don't know if my MS symtoms will improve or if I will stop the progression of the disease.  What I do know is that some people have improved and I will never know unless I try.  It really takes courage.  So hang in there Todybear.  You are courageous!

Tina

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 Tina-MSi [2] 37 years;EDSSi [19] 4.5   1/1/08 Wheldon CAPi [10]; Azith 250mg 3 x a week; Doxyi [6] 200mg daily, NACi [5] 2000 mg daily, started Flagyli [1] pulse 4/14/08.

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Rica PPMSi [20] EDSSi [19] 6.7 at beginning - now 2. Began CAPi [10] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [6] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [1] total 55 pulses LDNi [21] Rifampin 8/08 again NC USA

Tody

I empathize with both you and your husband in this situation.  Also, don't think for a moment that you are alone here with this issue. 

Perhaps these two threads might help.  

http://www.cpnhelp.org/cytokine_associated_emoti [23]

You are right to be concerned.  Even strong marriages often fall apart when an illness hits.  Especially one as devastating as MSi [2].  That's with or without CAP induced porphyriai [15] or endotoxini [24]/cytokine reactions.   You are very wise to look for solutions and I applaud your willingness to openly address the situation!

Can't pretend to know what it's like to walk a mile in your shoes but I do know what it's like to perhaps walk in your husband's. 

I can tell you from personal experience that your disease, whether your husband admits it or not, affects him greatly.  He likely feels any number of emotions about it - grief, sadness, anger, guilt, loss, trapped, bewildered, the list goes on.  Zero are your personal fault, it's just normal human response.

I don't know but your husband might feel like he's already been a real trooper in sticking with you through the disease so far.  Losing the ability to do all the things he's had planned, picking up slack within the family/household as needed, allowing his life to revolve around the illness, etc... 

Like most humans, he probably doesn't expect a medal but he might expect you would be grateful, appreciative and cut him lots of slack in return and so when you lash out at him, it hits him doubly hard as he already probably feels like he already gives so much.  For additional perspective you might checkout the chatrooms at the website, Wellspouse.org. 

For me, no matter, how much I understand that my husband's horrible behavior towards me is a result of his illness, it still hurts and stings just as much because I like your husband am human too.  As a "well" partner you also likely feel guilty for fighting or even for standing up for yourself in the face of your partners illness.

Please avoid taking any of what I am posting as a guilt trip.  I know you are ill, your body wracked with toxic bacteria and that the illness drives behavior but you seem to be wisely seeking solutions.  My heart breaks for you and your illness.  I am just sharing what it's like to the so called "well spouse" in a difficult situation.  Insight into the others point of view often drives understanding and tolerance...

All this being said, it seems to me you are likely experiencing porphyria and other forms of die off.  Your body will at times be full of toxic sludge that may lead to toxic behavior.  It may take more than charcoal to get rid of it.

In my husband's case, some of his ill behavior is driven by porphyria, some by endotoxin/die off reactions and irritation in his brain and some is just because he feels comfortable letting it out with me and also I am around and a convenient target.  My husband too is filled with loads of challenging emotions regarding his illness.  It's so easy to lash out at a spouse because they are most convenient.

It took the addition of ursodiol and cholystyramine before my husband began to act civil again.  I highly recommend them both.

Some suggestions beyond the obvious of stronger porphyria measures :

- Professional counseling

- You've learned that treatment has lead you to experience strong and inappropriate emotional responses to situations that create marital tension so you could discuss this with your husband and agree on a plan of action to provide your husband a buffer such as A) you or your husband move to a guest room to ride out the pulse storm B) you stay with a girlfriend or a relative for a few days during the storm, etc...

Some people here seem to plan their pulses to the extent of stocking up on favorite foods, books, bubble baths and lotions and then lock themselves away and grind through it.

I personally find that the more time I am away from my husband when he is at his worst rage etc... the easier I can tolerate it when I am in it. 

-  Maybe build a strong support network outside of your husband on whom you can count to help you ride out the roughest emotional times. 

- Relationships can easily become very one-sided when a partner gets ill.  One person does most of the giving, often for extended periods of time and the other does most of the taking through sheer necessity.  Maybe make sure your husband knows how much you appreciate and admire him for sticking with you.   Perhaps be extra nice to him on days when you do feel good. 

- Encouage your husband to get out and have fun with friends and family.  This will help restore him so that he has more to give to you.

Maybe some of these suggestions are dumb, I don't know. 

Maybe some find it easy to be the Rock of Gibraltar during an illness. I don't.  I think most people expect the spouse to be one though.  Most people spend their time trying to support the ill spouse and very little supporting the wellspouse.  Normal human behavior.

There are loads of days I want to get in the car and drive away and not come back.  There are days when I loathe my husband for his monsterous behavior towards me.  There are days when I don't even recognize myself for the stripes taken out of me from my husband's illness.  I think that my responses are all perfectly normal and quiet common.

Again, zero guilt.  Neither you or my husband, nor anyone here conciously chose to have such horrid illness.

My husband is not in much of a position to be a partner with me in his illness.  You on the other hand are in a position to be a partner and to come up with workable solutions with your husband to get through this rough spot. 

Again, I applaud your willingness to address the issue.  It's a tough one. 

Best of luck in finding workable solutions to sustain both you and your husband during this rough period - that may last quiet a while.

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Daisy - Husband on CAPi [10] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy I'm wondering if it might help if you and Tody's husband could actually correspond via email. He might feel like he's got a kindred spirit to support him.

Tody I know the nausea feeling. I took 1 a day for 3 days and yuck. I haven't, thank the Lord, had the emotionals though, yet. I've warned my family about it and my OH is OK with it, says it can't be any worse than when I was going through menopause. My mother on the other hand just can't grasp it. If it happens to me I'm going to have real problems with her. 

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Berkshire, UK. Diagnosed RRMSi [25] Feb 4th 2008.

NACi [5] 2400mg. All supps. Doxyi [6] 200mg. Zithi [26] 250mg. Metroi [1] 400mg.
No GP/Neuroi [27] support. Self medicating with help from David Wheldoni [28].
Started CAPi [10] 20th April 2008. First pulse June 2008

Todybear,

I am glad you brought this up as I have experienced my own interruption of marital bliss recently.  There is no doubt that this is hard on our precious spouses, and each deals with the stress differently.  Not sure which I despise more....having this wretched ailment, or having to keep my worried husband buoyant while I am worried myself.

Brings up a great idea, though.  It would be fantastic if the experienced and involved 'wellspouses' here would be willing to put together a page for those less experienced.  Even a brief rundown of common issues and remedies/solutions/ positive ways to look at it, etc would be great.  Some well-spouses here are quite involved[you know who you are] and such needed help could really make a difference. 

 Any interested parties?

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Wheldon Protocol for rrmsi [25] since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi [29]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

I'd be glad to but perhaps Mark Hall might be better since it would be bloke to bloke

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Daisy - Husband on CAPi [10] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

As the spouse of a frustrated caregiver, I agree that there is a need for information and support for well spouses. When the caregivers are frustrated and fatigued with us, they do not want to hear explanations that legitamize our irrational behavior. They do not want to hear from us that we are sorry and that we don't want to react the way that we do. They want us to smarten up and to stop behaving irrationally and stop lashing out at them. If there was a resource that the spouses could learn about "common issues and remedies/solutions/ positive ways to look at it" (kk2) then we could refer them to this information and possible opportunities to connect with other caregivers. I know this might be asking for a lot more work, but from a person that is so sad about hurting their relationship unintentionally it likely would be beneficial. I want to get well and not have the responces that I have but until then, the husband that I love so dearly is getting trampled.

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

Andesine,

I appreciate the intent here and having Daisy chat with Todybear's spouse is no doubt a great idea.....but....I can personally attest to a much greater need for many in the long haul.

This is why a page for wellspouses would be so fruitful.

Sorry, not trying to offend or to hijack--delete or move if necessary.  My intentions are good.

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Wheldon Protocol for rrmsi [25] since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi [29]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

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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

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CAPi [10] for Cpni [9] 11/04. Dx: 25yrs CFSi [12] & FMSi [13]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [14] 1000mg/day pulses; Vit D2000 units, T4 & T3

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Berkshire, UK. Diagnosed RRMSi [25] Feb 4th 2008.

NACi [5] 2400mg. All supps. Doxyi [6] 200mg. Zithi [26] 250mg. Metroi [1] 400mg.
No GP/Neuroi [27] support. Self medicating with help from David Wheldoni [28].
Started CAPi [10] 20th April 2008. First pulse June 2008

TB, lots of good suggestions here, but do remember two things: paranoia can be a symptom of secondary porphyriai [7] and it was your husband who first found this treatment and wanted you to start because he wanted his real TB back.  Therefore I think he might be more willing to brave the storm than you think............Sarah

An Itinerary in Light and Shadow

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I'm in, but one thing worries me. It seems unavoidable that eventually (or immediately) some caregivers would spill their guts and say how they really feel at some of their worst moments.  It would be cathartic for the caregivers, but I don't know if I would want someone suffering from a debilitating illness (and a challenging cure) to read that much truth about how caregivers are thinking and feeling. It might fill the ill party with destructive guilt and depression that would last longer than the caregiver's funk.  I don't think we can count on brain fog or short-term memory loss to sweep the impression away.  There are things I've admitted in PM's to my caregiver friends on this site that I would never have considered "uttering" publicly.  Do those type of thoughts and feelings belong in the public?

Still, as a group, caregivers are unequal to one another in their compassion, commitment, experience, ability to cope, optimism, knowledge, understanding, and patience.  Some really need the type of extra help discussed above, and the more seasoned caregivers are a good resource for support.

So what can we do?  Label the Caregiver forum with a "no peeking" cautionary message?

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [10] since August 06, Cpni [9], Mpn, B. burgdorferi, systemic candidiasis, EBVi [18], CMV & other herpes family viral infectionsi [30], elevated heavy metals, gluten+casein sensitivity. 

Tody, being a carer and a patient myself I have experienced both sides of the coin.   I am lucky that I have not been severely affected with psychological symptoms from the Flagyli [1] except maybe with a certain lack of my usual patience.   But from my perspective it is difficult to be completely detached from the rantings of a severely paranoid person, whilst at the same time ramain patient and kind when feeling like 'sh*t'.

I think that on a practical note Jim's suggestions are 'on the button'.   Hamish and I had several conversations along those lines when he was in crisis, and it certainly helped to cope when difficult situation arose.   And Daisy also explains very well how your husband might feel when you are in your ranting mood.

There was a useful thread which I had bookmarked about the psychological effects of MS, but at the moment I can't find it.   It discussed the problems which made life difficult for all concerned and how to cope with them.  I think that although living through this treatment can be difficult it is worth doing just for the psychological and mental improvements that the CAPi [10] will bring.

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Michèle (UK) GFAi [31]: Wheldon CAPi [10] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [1] pulse. Zoo keeper for Ella, RRMSi [25], At worse EDSSi [19] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

There is a website called Wellspouse.org, that is a great place for caregiver's to vent and to discuss caregiver type issues.

I go there some times and read the posts and can identify with so many of them.  Helps me realize I am not the only one...

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Daisy - Husband on CAPi [10] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy,

I agree about wellspouse.org--this is a great place to do one's venting, which needs to happen.

It is true that venting here would have it's risks--not the best venue.

This is why I envision simply a page that discusses the basic challenges facing the capper caregiver.  Much like the start here page for new cappers. 

Just some empathy and thoughts/ positive ideas that insightful folks like you and others here[you know who you are] have formulated along the way.  A link to wellspouse.org could be included as a support suggestion--and any other things that you have found.

Positive thought patterns can be learned and these go a long way in promoting CAP success for both parties.

Just some ideas..not trying to push in any way--hope you all take it that way.

Thanks for reading.  :) 

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Wheldon Protocol for rrmsi [25] since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi [29]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

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

:-) No prob.  Get him to either send me a pm, or my email address is capn_black2003@yahoo.co.uk [32]

Mark

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [9] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg 1200mg NAC 200mg. Doxyi [6] Jan08.  75mg Roxyi [33] Nov 26th 08

I agree kitkat2.

It is so very hard sometimes.

Mark

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [9] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg 1200mg NAC 200mg. Doxyi [6] Jan08.  75mg Roxyi [33] Nov 26th 08