Increase in symtoms due to Lyrica or supplements?
 

My wife has been suffering from perihperal neuropathy for a few months now. After a full neurological screening (spinal tap, MRI, blood work) it seems clear that the PN stems from what we both always thought: a toxic reaction to Azithromycin, followed by a week of Mirtazapin which worsened the symptoms a lot. I know neither of these medicines are mentioned here on the forum that often, but the correlation is extremely clear to both of us and I choose to trust our intuition in this (since all the predictions the doctors made have been false so far).

Three weeks ago my wife started on a low dose of Lyrica - 50 mg initially - and has slowly upped this by 25 mg increments. Today she's at 150mg (75mg morning/evening). The Lyrica quickly supressed the most painful symptoms and after about 1-2 weeks of treatment the PN had been reduced to slight burning and tingling, no more sharp pain. However about 3 days ago the burning and more painful ache started coming back and she feels the symptoms have had a slight increase every day since. I am unclear as to what might cause this. Do any of you have experience of Lyrica (or Gabapentin) at first working for the pain and then the pain coming back?

Also about ten days ago my wife started eating a daily regiment of supplements:
- B12 Methylcobalamin - 2mg (1mg morning + 1mg evening, empty stomach)
- Vitamin D3 - 2000 IU
- Magnesium - 250mg
- Omega 3
- Probiotics

I recall reading somewhere that sometimes when people start with B12 they get an increase in pain, could this be a factor? Or could it be that the nerves have started healing and thus are causing more painful sensations?

We also just got home Acetyl L-Carnitin, but the morning after the first 500mg dose is when she started having the increase in pain, so we stopped that out of fear it might be the root cause. Any input on this? Should she keep up the ALC?

Thankful for any help and input on any of these issues and questions.

Sometimes, if numbness is present, when people start the nutrients to begin healing, the numbness is replaced by increased sensations as the nerves "wake up". This is temporary.

Also if one is really low in B12, beginning it may temporarily reduce potassium in the serum. This is because the B12 stimulates the bone marrow to make new blood cells which deplete potassium.

So eating potassium rich foods may help with this. Normally this is not a long lasting effect either, as the bone marrow will stop
when it senses enough blood cells have been manufactured.

Lyrica and gabapentin are strange, in that they cause rapid tolerance in some people. They do not work equally for everyone or predictably.

Thank you for the quick reply MrsD. She hasn't had any numbness, more pins and needles, burning, stinging, ache and painful stabbing. But once the symptoms went down they weren't replaced by a feeling of numbness. We also haven't gotten the B12 levels back (only got a note saying they were "normal" and as we all know that doesn't mean much unfortunately). So when we get those numbers I might increase to a higher B12 dose. In 2011 she had a B12 level of 250, so it might be more or less than that at the moment. But I doubt it's over 400 - the doctos have told her that she has issues absorbing B12. I haven't yet looked at Folate/Folic Acid. I want to get the B12 levels from the blood work before continuing with more supplements.

As for Lyrica resistance - it's not impossible. But since we have been ramping up the dosage about 25mg every three days I would think the resistance wouldn't be an issue yet. She's also at a relatively low level at the moment. Nour neuro says we should aim for 200mg (so thats about one more week of dosage uppings) and see how that works.

Tomorrow my wife will hopefully have a phone call with the neuro and discuss this unfortunate new development.

On a side note I'm a bit scared of introducing new supplements because I'm afraid it will cause more issues with the NP. Is this an ungrounded fear? I'm mostly thinking of Folate, ALC, Q10, Alpha Lipoic Acid and Benfotiamine as these are a bit more rare supplements here in Sweden so there's not much "official guidance".

I think you should keep it simple in the beginning.

You can add in the Benfotiamine, as it appears to be really safe.
Some people have errors in thiamine metabolism. Start at 150mg which is conservative. (you can use regular thiamine if that is easier to obtain). Many people on this forum do well with thiamine/benfotiamine.

But give the B12 3months to work. Oral just gives 13mcg/1000mcg dose which isn't alot.

The body will pick and choose where to send the B12...it has priorities that haven't been really researched. So the onset of supplementing is not fast, and unpredictable.

If she did 5mg once a day on an empty stomach, the initial response would be faster.
Before any retesting, stop the B12 about a week before, so a more realistic result is measured. You don't want any false elevations to be revealed as those are confusing.
Once a level of 1000pg/ml is reached you can back down to 1000mcg a day if you choose.

If you introduce too many supplements at once, it can be difficult to figure out which one(s) are working for you.

Thank you once again for the quick reply.

I just ordered Doctor's Best Benfotiamine from iHerb, as they ship to Sweden.

Is 5mg B12 daily safe? I haven't found anything mentioning B12 toxicity or dangers of high B12 levels, but I want to make sure. If 5mg/daily will have a faster effect then I will definitely have her try that.

How long after stopping the antibiotics did your wife develop peripheral neuropathy? This is exactly what happened to me - except it was Augmentin for 1 week. My neuropathy started one month after stopping the Augmentin. But the neuropathy wasn't from the Augmentin. It was Lyme disease. The Augmentin did something to stir up the Lyme disease and it started attacking the peripheral nerves. I was also having eye symptoms. And scary heart symptoms. Check out the posts from LizaJane about how to PROPERLY get tested for Lyme. Use the IGeneX lab only, not your regular doctor's tests. They are NOT accurate.

Also, Lyme disease does not show up very often in a lumbar puncture.

Connecting the dots
 

As much experience as there is and people willing to help, it is still rare to get a solid connection between the dots. What works for me might not for you. As I read your post I felt that it might do you some good to start a journal. I didn't in my early experience and ended up trying the same stuff twice before I remembered. The resurgence of symptoms can be maddening as there is no culprit sometimes. Mysteries involving diet, meds,atmospheric conditions, stress levels, the list goes on and on. Patience and relief to you Ken in Texas.

She started having weird nerve sensations (slight tingling, slight burning etc) towards the end of the 5-day treatment. These slightly intensified over the coming weeks but never got past the "irritating and discomforting but not painful" stage. Azithromycin has a really long half-life and is active in the body up to a month after the last dose according to the administrating physician. After about 6 weeks of these burnings and tinglings my wife started with the Mirtazapine antidepressant and after just two-three days the neuropathy got worse, and in a week it was outright painful. So she stopped taking them and we got in contact with a great neurologist who did a full regiment of tests on her as well as prescribed the Lyrica.

So while I am pretty convinced Azithromycin is the original culprit it seems the antidepressants had an increasing effect. The reason I think this is because she about 2 months ago had a try with Sertraline (SSRI) and after just one small dose she had severe nerve pain and pins-and-needles all over the body. This lasted for about two days. So it seems she is really sensitive to paresthesia side effects in medicin (which both Azithryomycine, Sertraline and Mirtazapine list as a side-effect).

THIS!

Keep it simple, go supplement to supplement. If you are loading up a supplement cocktail you're gonna have a hard time seeing what may be the one to eliminate.