Hello Loulou, It was over 6 months before I began to feel better.   Some of that I am sure was porphoria.  I began to take Cholestyramine to "mop up" that which kept recycling.  See my signature.   If I had mobility issues I would likely add a stool softener such as generic form of colace or peri-colace which are  the brand names in the USA, sold over the counter.  The first is only a softener, the second has some laxative quality to it.  I would take the stool softener in the early part of the day and the Cholestyramine in the evening.  When I first started I took it for almost 3 weeks straight at bedtime only.  Away from all other meds and supplementsi [5].

Please see the list at http://www.cpnhelp.org/reactions_and_remedies [6] and discern for yourself what your symptoms may relate to.  

I am doing the same combo as you.  Also take your doxyi [1] with a full meal right in the middle of it.   Take your roxi and tinii [4] on an empty stomach if you can, these have never caused me any upset in my stomach.  I am rather sensitive so I know how louse nausea and headaches can be.

My inclination is to say stay the course, really what other course holds more options?  That is why I made Doxy work, it really caused me stomach PAIN at first but I knew that it was the best for me in many ways. 

With your history you have been through a lot.  I suggest you blog more often to get a better sense of being part of the community.  I enjoy recognizing your name in the posts. 

Blessings to you Louise.

Louise

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Louise  CFSi [7], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [9] & Endotoxinsi [10] 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

Loulou, do you have any support at home? If you don't it is even more important to come by here regularly.   It is tough in the beginning, make sure you take your medication with food, space it out and make sure that you take anti porphyriai [9] measures.   This is what we expect with the CAPi [8].

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Michèle (UK) GFAi [11]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [1], Azi MWF, metroi [12] pulse. Zoo keeper for Ella, RRMSi [13], At worse EDSSi [14] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

loulou- In addition to your double-whammy of MSi [2] and Lyme's, I'd guess that you are generating more porphyrins than you are clearing from your body. Listen to Louise on this, she really learned the hard way how important the moppers are. You have to use them consistently over time to get the effect, as fat soluble porphyrins build up in the body, and it takes time abd consistency to bring the load down. I totally underestimated how crucial the porphyrins were in my first year and a half of treatment, and probably was much more misreable than I needed to be. I kept saying to myself, "It's not porphyriai [9], it's "x"" the "x" being some other thing I was focused on. I've seen this repeatedly with others as well: a kind of porphyrin-denial. Like "It's not the alcohol that's causing my problems, it's something else..." that alcoholics trot out. I think it is an impairment of our frontal lobe functioning and loss of clear judgement about our own state.

Hang in there. Mop, mop, mop! You may be like me and have a huge bacterial loadi [15] built up, and it takes God-awfully long to bring it down to the point that you feel better. But you will. And the alternative is much, much, much worse than how you feel now. Really. Permanant disability or death can really put a crimp in your life-style.

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CAPi [8] for Cpni [16] 11/04. Dx: 25yrs CFSi [7] & FMSi [17]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [4] 1000mg/day pulses; Vit D2000 units, T4 & T3

loulou, these people know whereof they speak. We all have been through some very hard, rough times and really empathize with you. If we knew any shortcuts, we would speak up, but at this point there aren't any. By joining this great community, you have landed squarely in the middle of this bunch of knowledgable, helpful, kind fellow sufferers who will support you every way they can - because they have all been where you are (or at least their own individual version of it). Lots and lots of pills to take, but after a while things start to get a little better.

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Rica PPMSi [18] EDSSi [14] 6.7 at beginning - now 2. Began CAPi [8] 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 [12] total 55 pulses LDNi [19] Rifampin 8/08 again NC USA

loulou, I too suffer some of the common ickies with this protocol. I have been fighting headaches this past week and I never get headaches. I did my first pulse a couple weeks ago and the effects of that just started to subside and it will be time for another one right away. It's very hard. I know that I want to quit. I don't enjoy the nausea, the mood issues, the tiredness, etc, but what are the options? We can stay the course and work through this battle, or we can go off the treatment and get sicker anyways. With the treatment, we have some hope for getting well, without the treatment, our future looks grim at best. Please keep up the good fight. We are here for you.

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SPMSi [20]< Supplementsi [5] & NACi [21], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [12] 1500 mg x 3 days once per month

Headaches can be a sign of porphyriai [9].  The porphyrins build up in the brain and are highly neurotoxic creating inflammationi [22].  Have had tons of experience with this and my husband.

By increasing the anti-porphyria measures and staying on top of them, his headaches have dwindled back down to very infrequent occurances.

Loulou - Hang in there - my husband has one of the most wicked forms of MS known and he's made clear improvements.  It took many months of a very aggressive cocktail to get him there with tremendous bumps along the way.

He has gone from being unable to walk more than a few steps unassisted, unable to climb stairs to now taking a 3 1/2 mile walk this AM including climbing up and down several flights of stairs.

My motto this past year "When you are going thru hell, just keep going".  A quote from the man known for his extreme tenacity and persistencei [23] Winston Churchill.

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Daisy - Husband on CAPi [8] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

lou,

sorry you are feeling crappy, others above have given good advise.  I did PM you so I hope you got the message!

I am in the home stretch for pulse #12 (by mistake I took 2 gms of flagyli [12] the first day! YOI) & I have been getting some big time skull cramps- headaches, silly walking & tripping, & my overall loss in pain since starting CAPi [8] has had some reversal - more pain.  Lots of pain neck, shoulders, all over & noticably in my right leg & knee area.  Lately my legs have been feeling stumpy, woody if that makes sense.   I have increased the Emergen C, added more Chitosan & am trying to drink more water.  The nausea has my innards- gut slowed down a bit.  I have also been eating the glucose in addition to my usual mopper measures.  I might go to yaeyama 2 x a day & see if that makes a difference as well.

 This is an up & down journey, no question.  You can pm me anytime..we are Canadian EH!

peace

r

 

 

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CFIDSi [24]/ME 32 yrs, FMSi [17], IBSi [25], EBVi [26], CMV, Cpni [16], 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

Thursday night. I wanted to take this opportunity to thank you all so profoundly for your advice and encouragement. I will pursue the antiporphyria steps as that seems to be what I am endlessly suffering from.

Daisy's advice of "when going through hell just keep going" seems to be the mainstay of my existence for the last number of years.

Too tired to email more right now but I'll do so  with blog or privately over the next few days.

 

Many, many thanks to Louise, Michele, Jim K., Rica, Todybear, Daisy and Ruthless1.

Loulou

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diagnosed MSi [2] Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi [1] 100 mg. 1BID. roxyi [3].150 mg.? BID,adding rifampin soon, pulsed tinii [4]. every 3 weeks, as of oct.17/08, no rifampin as yet, just doxy and 1 gram daily of IV ceftriaxone, soon to

Here I am again. I had to do my yearly physical on Wednesday. Socialized meds. will pay for that one. I just received my bloodwork results by fax.

Everything is in the Normal range except for cholesteroli [27] and LDL-cholesterol. Both are elevated. Gp says not worrisome.

Chol. is 6.89  opt.<5.20.

LDL is 4.57    opt.<3.40

ESR is 27  (0-20 is normal range)

vitamin B12  is >1476  (150-860 is normal range)

 

Everything else is in normal range and there was alot tested.

Gp really knows bare minimums of CAPi [8].

In your opinion, are these results particularly elevated cholesterol and LDL further proof of porphyriai [9] which I do believe I have but I am still so scared.

Please tell me what you think. I am ready to begin anti porphyria measures tomorrow. Please write back with further opinions? I remain indebted to you all.

 

Loulou

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diagnosed MSi [2] Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi [1] 100 mg. 1BID. roxyi [3].150 mg.? BID,adding rifampin soon, pulsed tinii [4]. every 3 weeks, as of oct.17/08, no rifampin as yet, just doxy and 1 gram daily of IV ceftriaxone, soon to

Being on the protocol has had very little effect on my cholesteroli [27] levels which are about the same as yours and have been at that level for years.   The only time they dipped to around the average level was when I gave a dairy free diet a try for a year. 

I'm hoping that one day my cholesterol levels will be permanently normal, but I think I might have to wait a while for that to happen. 

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Michèle (UK) GFAi [11]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [1], Azi MWF, metroi [12] pulse. Zoo keeper for Ella, RRMSi [13], At worse EDSSi [14] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006