Question about porphyria and xanax

Hi

I have only been on docy and roxyi for 5 weeks now and I can really feel porphyriai building up with more and more fasciculationsi, weakness, very bad headaches... I am taking 3 g of vit C to try to counter this, I take charcoal before going to bed, but those don't seem to really help. I drink a lot of water.

Today I have tried Xanax which immediately brought a significant improvement, I could get out with some friends, talk and have a normal dinner like a normal person, which seemed just incredible knowing that I was in bed the whole afternoon, very sick and not knowing what to do with myself...

My question is: do some people take xanax against secondary porphyriai? As I know it is addictive, I am quite scared of that aspect, and that is why I am asking for help, if anybody knows any product that is equivalent to that drug without the danger it can have...

Thank you very much!

Comments

Louise, that is great news

Louise, that is great news for me, so now I can  go to a sauna with a big smile on my face! Thanks a lot!
Diagnosed with MSi on March 2009, started CAPi on Jan 2010. Doxyi 200mg- Roxyi 300mg- NACi and all major supplementsi.

Shabhah, Heat is

Shabhah, Heat is vasodilating, with the sauna you get a pleasant red glow to your skin!  Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Lee and Shahbah, Recently I

Lee and Shahbah,

Recently I switched to the PAR pharmaceuticals generic brand of Cholestyramine.  I specifically asked for a formulation with no aspartame sweetner which is in all the "lite" formulation.  This formulation does have some sugar in it, I would prefer no sugar but this is what this pharmacy can get.   Acutally this brand tastes much better than my previous generic, this one is almost pleasant. 

Lee, it was the same for me Lee charcoal did not seem to do much for me and I road the rocky road of porphoria for 5 months before starting the cholestyramine so I had a long history and really was totally amazed by the mental clarity, the emotional stability and more that happened in about a week of taking it nightly.  

Then a time latter, I also discovered ChitosanHD from www.wholehealth.com< and that has been helpful.   If you have any reactions to shell fish this one is not for you.

But still, I am more confident that taking 1 - 2 packets of cholestyramine, just before bedtime, after a small fat stimulus, cleared my brain fog like nothing else and it even helps with stool regularity for me personally.   I do keep it away from real meals to prevent the absorption of needed nutrition and take it at least 40 minutes after nightime supplementsi which I take on an empty stomach to enhance their quick absorption so that I can take the Cholestyramine without affecting them.  

My Cholestyramine Rx is for 3 - 4 times a day, I have never taken it more than once a day, at bedtime.    Any one who wants more detail or chat on this sometimes charged subject please pmessage me if you like, and I will chat more with you, it is not for everyone but if your conditions are right it can be a strong answer to clearing porhyrins from the body.

Certainly we shall hear about those who have had some less than the best experience with this particular absorbifactant substance in the short term, and really everyone has different concomittant conditions that need consideration in any choice we make!

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thank you everyone for your

Thank you everyone for your answers. Of course I do not plan to take xanax every day but only when I feel terrible enough to try alsmost anything... This porphyriai thing is really the hardest part and I think I am too early in the protocol to  know what works best for me. It's a pity there is no strandard and sure way to get all the endotoxinsi out...

Also, I know some of you try sauna and I was wondering if the heat was not bad because of its vasoconstriction effect. As I have those daily headaches I was wondering if sauna would help... Any thoughts?

Thanks again for your great help!!! 

Diagnosed with MSi on March 2009, started CAPi on Jan 2010. Doxyi 200mg- Roxyi 300mg- NACi and all major supplementsi.

Cholestyramine is helping

Cholestyramine is helping me. It was a little tough getting on it at first. However, now I take 2 packets a day and it has been a life safer. The charcoal did not seem to do much for me.

200mg doxyi daily, 500 zithromax mwf,flagyli 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Actually, if you read the

Actually, if you read the section  <from the CPNi Handbook on treating "secondary porphyriai" (below is the excerpt)  there is a section on the use of benzodiazapines in the treatment of porphyria.  

I dislike taking taking any pharmaceutical; BUT, I occasionally use .25 mg of Xanex, (Xanex is not my porphyria treatment but I did find it helped occasionally during or after pulsing).   Due to the lack of my thryoid I have endocrine-based, occasional anxiety for which the script was written.    IMOi, it's no different than any drug that  may be addictive - limited and only necessary use is the key. Anyone who has had severe porphyria symtoms can appreciate any measure to alleviate porphyria, but it is only a temporary fix. 

I know the addiction issue as I had a terrible time titrating off Klonopin.  I was on it for over 15 years (originally prescribed to me for "restless leg syndrome" in the early 90's before the the consequences of long-term benzo's was known).  I was on a very low dose (.5 mg/day) but because I had been on it for so many years, it took almost a year to be able to stop taking it.

Again, this is just my opinion and experience.  Something to probably be discussed with one's PCP.

  Excerpt:

Antiporphyrinic Drugs 9. Benzodiazapine Drugs The specific benzodiazapine drugs used depends, in part, on the symptoms. For example, if panic attacks are the problem, xanax (0.5 mg three or four times per day) can be used. If sleeping is a problem, restoril (30 mg at night) can be used. 10. Hydroxychloroquine Hydroxychloroquine (100 - 200 mg once or twice per day) is often used to treat porphyria. For patients with symptoms of porphyria, a single 100 mg dose of hydroxychloroquine may be tried. If this trial dose relieves the symptoms, hydroxychloroquine may be continued. The hydroxychloroquine dose must be adjusted for each patient. This is done by increased the dose slowly, starting with 100 mg every other day, then slowly increasing to a maximum dose of no more than 200 mg twice per day. Most patients do well on 100 mg once per day. Visual/eye exams should be done periodically as per manufacturerís recommendations (See PDR).

*2/15/10-edited a few words 

 

 

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Dr. S told me in a

Dr. S told me in a conversation "if xanax works, its prophyria". It also works for me. Keep going the need for xanax will go away when you start feeling better.

200mg doxyi daily, 500 zithromax mwf,flagyli 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

My doctor gave me Xanax,all

My doctor gave me Xanax,all it will do is mask your problems and stop you questioning your doctor!!!

Do not use it,i refused it and was offered Valium and again i refused it,its a very bad practice to push these drugs just to keep you quiet.

You want to be well and not end up an addict!!!!

Good luck. 

CPNi,capi oct 09,NAC2400mg,Doxyi 100mg,full sups,

Moving to dr Stratton protocol next month .

Shahbah        

Shahbah        

Xanax isn't a drug that's prescribed to treat porphyriai so it's very doubtful that anyone takes it for that.  Frankly, I'm surprised that it's had that affect on you.  I would not start taking it for porphyria because as you pointed out, it is addictive.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day