FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | |||
|
||||
Wisest Elder Ever
|
When I was hypothyroid my glucose was always low. Some fastings like 70. When I had my treatment with levothyroxine started my fastings went up to 90. Consistently low blood sugars may indicate a reactive hypoglycemia, which may be starving your nerves when it occurs. When glucose is low, the mitochondria cannot produce energy. A supplement called acetyl carnitine can help encourage fatty acids to be substituted so that the cells can function more normally. Carnitine is normally made in our bodies, but this synthesis may become damaged and fail.
Yes, unfortunately, the Levaquin is a possibility. On that link I gave you, there is a link to Dr. Jay Cohen MD's website where he has suggestions to help overcome fluoroquinolone toxicity. The mechanism by which these drugs affect tendons is not clearly understood yet. But as far as the nerves go, I suspect a mitochondrial damage of some kind. I have several links in that thread to other places that give more details. Some people believe this damage is permanent, but Dr. Cohen holds out the hope that some supplements may help. The A1C is an average reading over time that shows spikes in blood sugar that regular testing misses. In many ways it is more useful than glucose readings. Aberrations in blood glucose may be "hidden" for many years, before showing up in standard isolated glucose testing. Some doctors believe these aberrations start the process of diabetic neuropathy.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Senior Member
|
All of the suggestions that Mrs D has given you, pre-supposes that you have a neurologist who specializes in PN and is one that will intelligently work with you, in testing for causes.
Your past experience with your present neuro doesn't sound as if s/he is one to do that or has the experience treating various forms of PN. Possibly a new doc is in the future for you.(?)
__________________
Bob B |
|||
![]() |
![]() |
"Thanks for this!" says: | mrsD (09-16-2011) |
![]() |
#3 | ||
|
|||
Junior Member
|
Thanks, yes the thought of a new doc has crossed my mind. Funny, I know what testing I think I need now but I also need a strategy to convince him. Bottom line is I will look elsewhere if I have to. Not sure right now where to look or who will listen. I'll cross that bridge when I come to it (which might be soon). The neurology department is short of docs so I couldn't get an appointment until Oct 28. That's so far off that I requested at least a telephone consultation this coming week. I plan to ask for testing asap in at least the following areas: Flouroquinolone toxicity (because of the Levaquin I took), more aggressive for hypothyroidism (my borderline TSH levels), A1C, and small fiber skin biopsy. By the way, I just started the B12 methyl cobalamine (5000 mcg/day), my B12 lab was 339 which is on the low side.
|
||
![]() |
![]() |
![]() |
#4 | ||
|
|||
Junior Member
|
I just had a telephone consult with my neurologist. First thing I mentioned was the possibility that Levaquin (flouroquinolone) may be the cause of my PN. He said there was no connection. He said there was some evidence that it damages tendons. He thought, though, that it was interesting my numbness, tingling, and nausea began soon after I took it. He also didn’t think Levaquin could cause PN because the PN would not have gotten progressively worse after I stopped the Levaquin. He did agree to read the information that I’ve been reading that connects Levaquin to PN. He gave me his fax number. Can you recommend the best research article (ie, from Dr Cohen?) that might get his attention? He insists on research that has medical authority (ie, NIH). Not sure it will change his mind but I believe it’s worth the effort. Even if he doesn’t listen to me, maybe he’ll listen to the next patient who has a similar story.
I mentioned some other possible causes to him to be tested including hypothyroidism but he said my TSH levels were within normal range and not worth pursuing. In fact, he said all the labs that were ordered (see results above) were everything that was needed to determine a cause for the PN, and since everything fell within “normal” range, that there was no need for further testing. He said if there’s been no noticeable progression of the PN, I should wait for my regular appointment with him on October 28th, so at least I have that. At that time he said he would pursue the possibility of small fiber neuropathy. I'm not sure where that will go. Regarding B12 methyl-cobalamine, I started taking 5000 mcg per day four days ago. Each night though I was having palpitations and was keeping me up. I noticed it can be a side effect. So given that possibility, this morning I reduced dosage to 2500 mcg (broke my pill in half) and I’ll see what happens. Regarding the benefits of B12, I’m not sure if it’s the reason, and I'm a pessimist by nature, but I did not have the burning/cold sensation in my feet the four nights I took it. My last B12 lab before this was 339. I asked the neurologist if there was anything I could do for my PN symptoms in the meantime such as supplements. He said I could take a multivitamin but to avoid zinc and B6 (I don’t remember why). I told him I was taking B12 and planning to take Acetyl Carnitine and CoQ10. I’m planning to begin Alpha Lopaic Acid (600 mg), Acetyl L Carnatine (750 mg in three increments) and CoQ10 (Ubiquinal) (100 mg). |
||
![]() |
![]() |
![]() |
#5 | |||
|
||||
Wisest Elder Ever
|
I take my B12 in the morning on an empty stomach.
I never get any energy or side effects from it either. My last reading was 1999 after trialing the new Puritan's Pride methylcobalamin so I know that brand works well! ![]() Without any B12 my tests are in the 800 range. Here is a link to my fluoroquinolone page: http://neurotalk.psychcentral.com/post661103-2.html Dr. Cohen's link is on there too. He did a study himself on his patients and their side effect profiles. If you read Dr. Cohen's website he has an interesting study on statins and how doctors IGNORE their side effects, because the drug reps do not tell them otherwise. Some doctors still trust the Big Pharma reps when that trust is very misplaced. The drug companies often do NOT publish their negative study results and only do so when compelled. (NY state forced Glaxo to reveal their negative studies on Paxil, for example, which were considerable and damning for children). Doctors remain totally blind to the toxicity of statins today, even when published accounts detail them, for this reason. Here is Dr. Cohen's article on side effects: (statins) http://www.medicationsense.com/artic...cts012108.html Dr. Cohen BTW teaches in medical school too. Here is one paper on fluroquinolones and nerve side effects: Quote:
http://www.ncbi.nlm.nih.gov/pubmed/8722551 Like with many other drug information papers, this one is from Europe, where the Big Pharma influence is less. The original information on estrogen replacement risks for menopausal women came from Europe up to 10 yrs before the HERS studies were done here (independently) of the Ayerst company who dominated positive benefits in US. As a result estrogen supplement therapy has lost its popularity here finally but many women died from heart attacks and strokes before the truth was revealed, in US. Don't get me started on this.... I've posted alot about deceptive Big Pharma, over the years! ![]()
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
![]() |
![]() |
"Thanks for this!" says: | antonina (11-05-2011) |
![]() |
#6 | ||
|
|||
Junior Member
|
MrsD, I will fax information (including the paper from Sweden) to my neurologist that connects levaquin to PN. I asked for his reaction. In the back of my mind I’m preparing for a confrontation and request for another opinion or referral to another neurologist. I’ve never had to go outside the system so this is new to me. If you can point me to any reputable neurologists in Ohio who might listen I’d certainly follow up on it.
I am taking B12 on an empty stomach per your recommendation in other threads. I take it first thing in the morning and then eat some breakfast an hour later. Speaking of supplements, does the following regimen sound reasonable to you? I started the B12 methyl-cobalamin a week ago. I just received these things from Puritan Pride and iherb a couple days ago: CoQ10 (Ubiquinol) (100 mg), Acetyl L Carnitine (750 mg in 250 increments), and Alpha Lipoic Acid (600 mg). Even though I’m not sure it’s the cause, I’m mainly concerned about the toxic effects of levaquin that cause PN in some people. I believe the Puritan Pride sale (buy 1 get 2 free) on CoQ10, Carnitine, and others ends Thursday, September 22nd. So I might submit another order before it ends. |
||
![]() |
![]() |
![]() |
#7 | |||
|
||||
Wisest Elder Ever
|
Your choice of supplements looks good. Covers the mitochondrial bases. It may take time to get results, I'd give it 6mos.
I'd add in magnesium and fish oil...since both really help nerves heal. These are much less expensive than the others you have purchased. If you really want to read about drug toxicity, see if you can find this book: Bitter Pills by Stephen Fried. I read this book when it came out. It is about the damage his wife suffered from Floxin (which is not used much anymore, but Levaquin is chemically derived from Floxin!). She developed seizures that did not resolve from that drug. When this book was written, some knowledge about CNS toxicity was known about the fluoroquinolones. But now, so many people have been damaged, the net is filled with sites, and blogs about it. You might find this book "used" on Amazon for a very low price. http://neurotalk.psychcentral.com/sh...hlight=magnets This book goes into how difficult it was to get a black box warning or ANY actions at the FDA at the time when postmarketing severe drug reactions occur. It is really an eyeopener! Amazon: http://www.amazon.com/Bitter-Pills-I...6602485&sr=1-1 I often buy used books from their alternate sellers listed, and often they are really a "deal" and all of them so far have been in excellent condition! After reading this book, you may loan it to your doctor! At this time doctors really will not speak against another doctor's treatments. So response to YOUR questions will reflect that tight lipped factor. They will NOT admit to an error of judgement and risk a trial or liability action.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
![]() |
![]() |
Reply |
|
|