[Bugaboo]

Hi,

The short story of how I got PN. I was on a drug cocktail which included Cipro then Tequin (many months of it) for late stage Lyme disease. It was a bad comedy of errors but in the end, the doctor thought my lyme disease was getting worse & causing PN so they gave me more cipro which cause more PN, which caused them to give me more drugs, etc. Only when I went off all drugs fr a few weeks, then had a UTI and given levaquin, did I find out that I was having Fluoroquinolone ADRs all along. Now 8 years later (though much better), I still have full body tendon damage, PN and dry eye, nose, mouth problems.

I went to Cornell- Weil in the city. And although the doctor understood my situation, there was not much to be done but take pain meds.

Since drugs caused my problem, I tried to go without drugs to cure the pain. But after so many years of suffereing, I wanted a better quality of life. I am now on Lyrica 150mg a day and tramadol as needed. I have not given up on healing and would like to know what I can do nutritionally to help myself. I am limited as far as suppliments go because I have a very sensitive bladder and can't tollerate a lot of vitamins. I am also limited to medications because of my dryness problems. I have to try suppliments/meds one at a time to see if I can tollerate it.

I currently take fish oils as well as vit D3 7 iron as I am low.

I know MS D has talked a lot about neurotoxic drugs and Mitochondrial damage so I thought perhaps her and others would have some insight.

Thanks all for your time.

[mrsD]

I have read for a long time about the fluoroquinolone damage thing. I searched and searched for a tendon update and found none. The Wiki entries for them, say "permanent". But that is Wiki after all.

The only hints I found were at Dr. Jay Cohen MD's site for some supplements.

http://medicationsense.com/articles/...pro_other.html

That link refers to milk of Magnesia... at one point, and that is NOT what to take if you use Lyrica or Neurontin. If you try chelated magnesium products space around those two drugs as the mag will complex out the absorption of the drug.

Elsewhere on his site is an anecdotal reference by a fellow who had IV glutathione injections, which helped him. This typically would be from a holistic doctor.

Many drug toxicities affect the DNA in the cells and mitochondria. Chemo reactions and statins fall into this category so the mito support things can help. I am unsure what the damage from the fluoroquinolones is really targeting, esp at the tendon level.
But it wouldn't hurt to try them. None of them are serious in side effect profiles but they tend to run pricey.
Acetyl carnitine
CoQ-10-- a quality absorption enhanced type
alpha lipoic acid (or the new r-lipoic)
Biotin (sometimes included in mito formulas).
So the neuropathy pain may respond to the mito type products.

The tendon things... may be due to some enzyme involvement that we don't understand yet. Collagen/ tendon support nutrients are
silica (often sold as horsetail extract)
Vit C
SAMe (this should be at least 400mg a day, and is expensive)
zinc (as OptiZinc)
Proteins (easiest way is a Whey protein shake a day)
high dose glutamine

And a way to enhance glutathione production is using NAC (n-acetyl cysteine).

You should get tested for B12 and Vit D to see where you are at with those.

Long term lyme treatments involve other antibiotics and long term use of some can really deplete nutrients:
If you used others besides the Cipro and Tequin... here is a website with some listed:
http://www.chiro.org/nutrition/ABSTR...ibiotics.shtml

I would definitely do
1) magnesium --see my mag thread on Vitamin forum
2)acetyl carnitine -- 1 gram in divided doses daily
3) CoQ-10 -- as much as you can afford, at least 200-300mg a day
4)lipoic acid
5) NAC
6)whey protein (some brands are high glutamine enriched)
7) therapeutic dose multivitamin with zinc, B6, thiamine, etc.

You can eat high silica foods.
http://www.buzzle.com/articles/silic...e-in-food.html

You will want to make sure you have good kidney functions before starting supplements, and also discuss this with your doctor...if you are taking any other medications that might interfere, like the Lyrica /magnesium does.

[dstinn35]

So I've read many of your articles and your knowledge of Cipro seems to be more than most. My husband suffered a bout of diverticulosis about 2 months ago and was put on Cipro along with Flagyl (sp) for approx. 4 weeks. The first dose being 1 500mg. Cipro twice daily for 14 days while waiting to see a specialist. After seeing a gastro he was put on an additional 10 days of the two drugs. 1 week after his colonoscopy and still complaining of pain he was given and additional 7 days. He had just gone off of all of that about 2 weeks ago and he recently got a sinus infection and was put on Suprax. About 1weeks ago he complained of pain in his upper right butt cheek around the phsyatic area. Really horrible pain that he could not sit or lay with only stand (my husband has had kidney stones that had to be broken up in the hospital that he took nothing for so he knows pain) he went to our GP and they told him it was an irritated phsyatic nerve and put him on more meds for pain and an ANSID.
Should we be concerned about this pain.....I certainly am but the doctor does not seem to be...

Thanks

[mrsD]

So you are not getting any help from the doctor?

I would ask for PT (physical therapy) RX and go to a good
rehab, and see what they think. Could be he has some tendon
rupture in the buttocks or something similar in the pelvic area?

They can do range of motion, various electrostim therapies,
ultrasound etc to see if it improves.

Typically a good rehab place will know how to refer you if need be.

[zygopetalum]

Just a comment re: sensitive bladder. bugaboo do you live in an urban area with chlorinated city water? I had problems for years with a couple of different DX, put a filter on my faucet to remove the chlorine and most of the pain disappeared.
Zygo