[mrsD]

I think at this time I'd opt for the yogurt..a good one like Stoneyfield.

I remember a person our PN board many years ago who claimed his friend died
because of probiotics..that they contained a fungal contaminant because of how they were made. And that guy was immunocompromised and the fungal infection took him over.

We have also had many people over the years damaged by Cipro and Levaquin.
Because the mechanism of that neurological damage is not understood yet, it remains difficult to figure how to aid or help restore the nerve damage.
Since you remain on Cipro...that is a huge issue for you.

With chemo, the last decade has shown mitochondrial support with l-carnitine or acetyl-l-carnitine + CoQ-10 and perhaps biotin added to be useful. The HIV community uses this approach with their PN causing drugs.
Since these are not harmful, but are expensive you can think about perhaps trying them and perhaps they will protect against Cipro damage.

The mechanism that Flagyl damages involves the alcohol/aldehyde dehydrogenase metabolic pathways. Flagyl is metabolized like alcohol, and when those enzymes get overloaded (or are weak genetically) the aldehydes build up and damage to nerves is one result. This may be helped by taking large doses of thiamine (B1). Another version is benfotiamine which is fat soluble and remains in the body longer than the water soluble thiamine.
Thiamine is easy to find locally and is inexpensive. But benfotiamine is best bought online still...its price has come down, from over $60/mon to a more
reasonable $10 or so.

Your Maxzide depletes calcium,
folic acid and zinc. (the triamterene portion) and potassium/magnesium and thiamine, CoQ-10 and zinc (the hydrochlorothiazide portion).

Asacol and Pentasa deplete folic acid.

I think next blood work you should request a zinc level. Very low levels of this retard healing and lower the immune system.
I would wonder at the rationale for using a diuretic for your blood pressure?
ACE inhibitors would be much easier on you and your electrolyte status.
The only thing they deplete much is zinc. And using lisinopril specifically crosses to the blood brain barrier, and is thought to prevent some Alzheimer's onset. Also lisinopril is not metabolized by the liver, and so liver stress is less.
You might discuss a change with your doctors next visit. That is your choice tho. (not all doctors know the specifics of lisinopril).

Thank you for the oxalate paper...that is very optimistic. Oxalate overload is a huge problem, medically IMO.

So if your PN is drug caused...and you are forced to continue the Cipro..it will be very hard to reverse your PN, if the Cipro is indeed the cause. There are websites about this. If you Google fluoroquinolones peripheral neuropathy you will find several forums. We can't put up links here to other forums, so you have to search that yourself.

If your PN is autoimmune induced...like Melody's husband Alan...you have an avenue open to you using IVIG. (Alan was diagnosed with a spinal tap).
I know you are not eager for more needles and invasive things, but if this is your cause, it can be treated, if your insurance pays for it.

It seems like a lot... that is why I steer people in certain directions. I spent years doing this research and am trained in understanding drugs and the various biological effects of them. I have done most of the work already.
Just spend 1/2 hr a day, in the directions I have pointed..and it won't be so much for you.
Several people here use IVIG already, and most of them have positive results from it. So they can help you too.

[lefthanded]

MRSD, VSL-#3 http://www.vsl3.com/VSL3/default.asp is a tested product, one of the most highly tested, as it is the only one that can claim to assist in treatment and prevention of pouchitis. I could not consume enough yogurt daily to get the amount of beneficial bacteria that I need to both keep the flora levels up in my pouch and ileum (most of which was used to construct the pouch), and to combat the destruction done by the Cipro. I add the VSL to yogurt when I dose it every day. I have gas difficulties if I take too much VSL or eat too much yogurt (j-pouchers are sensitive to gas creation) so I have over the course of five years, worked to find the right dose for me. I am thankful to have a gasto who believes in and promotes probiotic use, but he has even said that a lot of money is wasted on many probiotics and commercial acidophilus preparations because by the time they are consumed most of the bacteria in them are dead, even when the bottle claims they were live at the time of production. This is one product I will keep taking. Like I said, my pouch and my gut come first . . . I found out how fast you can go downhill without them!

Taking meds is not so simple when you have a j-pouch. Visit the online community and you will find as many regimens as patients. Life without a colon, especially if there is underlying disease (cancer patients and accident patients seem to do better) which creates more symptoms and which must be treated.

I was given both Flagyl and Levaquin with at least my first surgery. Flagyl is now listed in my medical chart as a drug allergy, so I will not be prescribed it for anything. For some reason some of us with pouches harbor bacteria more easily than others.

The Maxide is because I retain water. Diuretics have been used as a first line HBP treatment for a long time. Another reason they we have chosen not to use them is because ACE inhibitors are contraindicated with several other drugs, including pain medication. I do use low doses of Vicodin and I use medical cannabis, with my gastro's Rx, and in WA it is legal. (I am fortunate that at the coop where I obtain my MMJ, one of the employees is a Crohn's patient, and can tell me exactly which strains are best for the issues I am dealing with at the moment, be it pain, cramping, or inflammation.) I take that both by inhaling and by ingesting, for the anti-inflammatory properties and the way it works in conjunction with Vicodin when I have a severe onset of acute pain from fissures. It also aids in relaxation of both my mind and my body when I have a difficult dilation to do. Happily, this combo, I have found, also calms my PN to the degree that I documented in my diary a week or two ago an evening where I tested myself for things I can not normally do, like get up from the floor without a chair or person helping me, which normally causes great pain and instability in my feet and toes. I repeated this several times, in fact, gleefully and with a lot of ruckus, as I have not been able to get down to and up from the floor without great difficulty for so long! I was concurrently treating a cold, so who knows if the decongestants and antihistamines, in combo with everything else, may have played a part. . . but I got one evening of feeling completely normal. What a treat!

I have searched this house for my last blood work results, but must have hidden it from myself, because it is not in my folder. I am waiting for my doctor's office to call to let me know if my new results are in.

My current Rx and OTC expenses, including supplies, et al, are well over $600/mo. Living on disability and SS, this is becoming an issue for me. I discuss my Rx profile quarterly with my gastro, in case there is anything new, or in case we deem it is time to try another approach. However we both agree to not rush to change what seems to be working the best for me to date. My PCP is new, as our previous clinic closed the local office, and I am working with her right now on getting on board with all of my other docs as well.

I also have a dermatologist and an opthamologist. I have chronic eczema on my hands from all the hand washing that goes with 8-15 trips to the loo a day. He also treats some of the skin issues I have from leakage and inflammation "down there." And I recently developed epischleritis, which the opthamologist believes is probably a Crohn's manifestation, not uncommon in autoimmune folks.

What next?

[mrsD]

things for irritated hands is evening primrose oil.

You open a capsule and rub it in. It is better than any lotion I have found.
Constant washing defats the skin, and stresses it. The oils in the primrose restore it. Many expensive cosmetics today have it added.

I hope you are using EFAs in your diet, to help heal also.

[shiney sue]

Thamk you so much mrs one again agem. Sue a

[BEGLET]

Sorry to hear you have been thru so much - and are continuing to do so... As a fellow "GI" sufferer - yes, these issues are huge and if you are able to somewhat control - that is great....

I have gastroparesis (stomach paralysis) due to autonomic neuropathy - which started after my PN started 9 years ago, at first it was mild and considered "post viral" and not given any treament... I then got C-Difficille Toxin from Cipro - which required 6 months in and out of the hospital on both flagyl and oral vaconycin.., at the end of the time - the C-Diff may have been gone - but so were my sensory nerves, comletely, and I've not been able to eat any solids due to the nerve damage done there..... I now live only on Ensure and a hospital broth, very expensive, very underweight, and always nauseus.... (this has been for 8 years)... I find it more debiliting then the PN itself - which is also considered severe and shows such by biopsy, NCS/EMG, etc... we dont know if the drugs for the C-diff or the infection itself contributed to such a fast decline.... Even with all this - my vitamin levels and absobsorbtion have been fine - although as Mrs D says - if need to be tested - do so! Perhaps a supplement will help... To top things off - I'm lactose intolerant so even something like yogurt I cannot tolerate.

In 9 years I've only had a couple of neuros try to give me meds to control to the PN itself and I could not tolerate at all - bad side affects - I believe they only cut pain - and the amount of meds I take every day just to tolerate the fluids are considered more important to my survival....

As for the PN itself - I've had several different diagosis - one deadly -- but I'm still here for now so they changed it to CIDP and I got IVIG for over a year and a half, with just a slight increase in energy and balance - but are now looking again at an inherited forms.... my sural nerve biopsy showed severe damage of several types - and feel any recovery for me will just be an increase in quality of life and perhaps being able to tolerate more of a diet...

Kinda long story - but I've had years of tests - different diagnosis - and I've learned if nothing else - waking up every day is going to be different - can never perdict how one is going to feel - and if you overdo - your body will "take you down" for a few days! Yes, I overdo at times - but I know what to expect and plan accordingly. I continue to search for a firm diagnosis - if for no reason to know what my prognosis is.... the stickies and advice from our members is very valuable.... (and hey, I understand about talking about the GI issues on this forum!).... just hang in there - I hope you can find some relief and am glad to hear that you can at least eat.... take care...