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mrsD 08-31-2008 10:09 AM

thanks..
 
please check those two results... B12 actual number, and
the bicarb test (you may not have had it)

Vancomycin is absorbed orally....not much but enough over time and also in some circumstances such as GI inflammation may increase blood levels.
http://books.google.com/books?id=F0n...sult#PPA329,M1

Vancomycin is a known PN causer.

Xifaxan is less absorbed...3% or less.

When a young person gets PN one really has to consider toxins, and drugs first. Also hereditary PNs like CMT--Charcot Marie Tooth can be tested for.

The elevated fasting insulin suggests the beginning of insulin resistance and may in females point to PCOS as well, or elevated adrenal functioning (but you said you were tested for this already--Cushings?)

I was 30 when my hypothyroid problems started in my feet.

I think diabetic PN is not likely for you yet. It takes TIME to develop and you are young still.

Most sarcoid patients have it in the lungs. But it can occur anywhere. There is a forum with information on this and a novel treatment. Google The Marshall Protocol ( we cannot link to other health forums here) and check sarcoid out. Even if you do not get that treatment, there is info there that may help you understand this better.

chamade 09-01-2008 03:35 PM

Hello, I have subscribed to the forum only to comment on your post.

Because of your multisystemic ailments, the fact that you say your foot
pain got worse after steroids and living in MA tell me that you need to checked
out for Lyme disease by a specialist.
Going to a non-Lyme specialist for this diesease is like going to a dentist for
brain surgery. Please visit and post in the "seeking doctor"
forum so that someone from MA can recommend a LLMD (lyme literate doctor).
The standard screening test for Lyme (ELISA) is about 50% sensitive and this
number is lower if the disease is chronic. You need to have western blot done
at a lag that specializes in tick borne illnesses such as Igenex so that your
LLMD can look for specific Lyme igm/igg antibodies.

I have had almost the same symptoms as you (neuropathy, stomach problems, ellergies, mood swings, eye pains etc.) and am doing much much
better after seeing a LLMD doctor.

Again, please don't leave this stone unturned. You would not believe how
many go around with "autoimune" dieases, yet have bacterial/viral infections
at the source of the problem.

Macophile 09-02-2008 05:59 PM

Quote:

Originally Posted by chamade (Post 359445)
Hello, I have subscribed to the forum only to comment on your post.

Because of your multisystemic ailments, the fact that you say your foot
pain got worse after steroids and living in MA tell me that you need to checked
out for Lyme disease by a specialist.
Going to a non-Lyme specialist for this diesease is like going to a dentist for
brain surgery. Please visit and post in the "seeking doctor"
forum so that someone from MA can recommend a LLMD (lyme literate doctor).
The standard screening test for Lyme (ELISA) is about 50% sensitive and this
number is lower if the disease is chronic. You need to have western blot done
at a lag that specializes in tick borne illnesses such as Igenex so that your
LLMD can look for specific Lyme igm/igg antibodies.

I have had almost the same symptoms as you (neuropathy, stomach problems, ellergies, mood swings, eye pains etc.) and am doing much much
better after seeing a LLMD doctor.

Again, please don't leave this stone unturned. You would not believe how
many go around with "autoimune" dieases, yet have bacterial/viral infections
at the source of the problem.

Thank you for posting.
1) foot pain got better when I was on the steroids. It did not get worse, after they were withdrawn, the problem just returned.

2) How can I get lyme disease if I haven't been anywhere near ticks? I don't go in wooded areas, I don't own pets, and I don't have any symptoms that are the most common of lyme disease, such as:
a) "early localized disease with skin inflammation" aka rash or tick bite.
b) "early disseminated disease with heart and nervous system involvement, including palsies and meningitis" I have had no paralysis, and I have never had meningitis or anything like it; and
c) "late disease featuring motor and sensory nerve damage and brain inflammation and arthritis" I have lost no motor function, and I have no brain inflamation or arthritis or similar. The only nerve problem I have is pain, and some sensory loss on the bottom of my foot behind my first three toes.

Macophile 09-03-2008 09:57 AM

Quote:

Originally Posted by mrsd (Post 358345)
please check those two results... B12 actual number, and
the bicarb test (you may not have had it)

Vancomycin is absorbed orally....not much but enough over time and also in some circumstances such as GI inflammation may increase blood levels.
http://books.google.com/books?id=F0n...sult#PPA329,M1

Vancomycin is a known PN causer.

Xifaxan is less absorbed...3% or less.

When a young person gets PN one really has to consider toxins, and drugs first. Also hereditary PNs like CMT--Charcot Marie Tooth can be tested for.

The elevated fasting insulin suggests the beginning of insulin resistance and may in females point to PCOS as well, or elevated adrenal functioning (but you said you were tested for this already--Cushings?)

I was 30 when my hypothyroid problems started in my feet.

I think diabetic PN is not likely for you yet. It takes TIME to develop and you are young still.

Most sarcoid patients have it in the lungs. But it can occur anywhere. There is a forum with information on this and a novel treatment. Google The Marshall Protocol ( we cannot link to other health forums here) and check sarcoid out. Even if you do not get that treatment, there is info there that may help you understand this better.

Hi!
Thanks for your help. I will look up about those tests.

I agree that diabetic PN is not the most likely, and my endochrinologist agrees. He thinks if it is a cause it is only part of the problem... not the whole problem.

I looked up about CMT, but it doesn't seem to fit. My muscles are fine.

If I haven't been on Vancomycin or Xifaxan for over 6 months before the problem started, I don't know if that could be the cause. I will ask my gastro though.

And as for the "The Marshall Protocol" I can't find anything about sarcoid on their forum... maybe I am just doing it wrong though. :rolleyes:

mrsD 09-05-2008 02:44 AM

Quote:

Originally Posted by Macophile (Post 360820)
Hi!
Thanks for your help. I will look up about those tests.

I agree that diabetic PN is not the most likely, and my endochrinologist agrees. He thinks if it is a cause it is only part of the problem... not the whole problem.

I looked up about CMT, but it doesn't seem to fit. My muscles are fine.

If I haven't been on Vancomycin or Xifaxan for over 6 months before the problem started, I don't know if that could be the cause. I will ask my gastro though.

And as for the "The Marshall Protocol" I can't find anything about sarcoid on their forum... maybe I am just doing it wrong though. :rolleyes:

The FAQs section of that forum has alot of info.
The whole forum is based on a treatment of sarcoid. Their treatment however is not commonly used by most doctors yet.
The sarcoid info in the FAQs portion is very long, and based on many patients there asking questions.

here is another link:
http://www.stopsarcoidosis.org/sarco...FQsiIgodIybOiw
which lists symptoms.

There is also a relationship to Vit D and sarcoidosis:
http://www.sarcinfo.com/faq.htm

So you should get that tested also if sarcoid is suspected.

If your PN is confined to the feet, I also think a good evaluation by a podiatrist is needed. Many foot issues can cause pain there. My son has a pronating ankle which was minor and not visually obvious, and had terrible pain when he started college and had to walk miles per day. A simple orthotic changed that completely.

Macophile 09-15-2008 10:32 AM

The Rheum. have started me on Methotrexate http://www.nlm.nih.gov/medlineplus/d...r/a682019.html ,which is scary as it is used to treat Lupus, Cancer, and other scary sounding things, but so far it does seem like it might, possibly be doing something. (I have been on it for 3 weeks now, only one week on the intended dose, though.)

Now though, I seem to have developed a side-effect from the Methotrexate. I have been itchy for the past few days. No bumps, rashes, swelling, redness, etc. I look normal except for the itch. If anyone has had itching as a med. side effect and knows how to lessen it please help! And if anyone has any ideas about anything I'm open to them!

echoes long ago 09-15-2008 11:44 AM

benedryl is often used for an allergic reaction to medication but i think you should contact your doctor and let him/her know the reaction you are having. Allergic reactions can become worse over time after repeated exposures.

Macophile 09-18-2008 10:59 AM

Quote:

Originally Posted by echoes long ago (Post 368834)
benedryl is often used for an allergic reaction to medication but i think you should contact your doctor and let him/her know the reaction you are having. Allergic reactions can become worse over time after repeated exposures.

Thanks.
I did call my Dr. (Before I posted on here, actually...and she was going to call back within 48hrs.) She says she doesn't think the itch is from Methotrexate, as the itch associated with that 99% of the time involves rash. But she suggested taking Benadryl every 6 hrs. I have been doing so and it seems to be helping... I just hope the itch completely goes away soon.

Macophile 09-27-2008 03:16 PM

Quote:

Originally Posted by jakervik (Post 377310)
I also have small fiber PN. I've had it for over 4 years. My glucose level has been around 208 and I do know that sweets, alcohol, and stress effect my feet. I take Lyrica and tramadol. You walk on your feet and that is so difficult to deal with, because there is no end to the pain. Mine has stayed on the bottom of my feet, and it hasn't spread.

I can sympathize. My sugars were never that high (which is one reason the dr's were not sure that the sugars were the reason/whole reason for the foot problem). They took me off tramadol, and I wish the lyrica/other drugs worked better, but the neuropathy I have has moved off the bottom of my feet... it's about up to my ankles now, or can be as it is random, but there is always some part of my feet bothering me, it just isn't always the exact same spot.

But I agree about the walking on them making it worse. There isn't much you can do to make is better either. nothing seems to work. The only things I found that even remotely work are a) sitting on them to stop the feeling in them and they go to sleep basically or b) rubbing them or getting someone else to rub them. Apparently pain receptors are overridden by touch receptors. (Who knew!) I hope your feet feel better. (mine too.) :)

Macophile 10-09-2008 07:34 AM

Update
 
Well, the methotrexate might be doing something. I no longer feel like I need to take double the amount of pills (I haven't been, but you get to a point where you feel like it might help) to get to a tolerable pain level. (And by tolerable I mean I am not screaming every 5 seconds... but it is still not improved enough for me to function properly.)

We will find out Nov. 14 (appointment with Rheumatologist) if the methotrexate is making any improvement in terms of my blood tests, which will be interesting to see. I just hope the pain keeps going down, and stays that way. If anyone has any ideas or suggestions please let me know. :)


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