CIDP (Chronic Innflammatiry Demylineating Polynueropathy)

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

CIDP (Chronic Innflammatiry Demylineating Polynueropathy)

Postby TXBill » Mon Nov 05, 2007 9:18 am

It's been awhile since i have posted here.

I was on Lipitor 80 mg a day for just a couple of months about two years ago. I started feeling very weak in my legs, had severe cramping, and the tingling in my feet and hands. I told my cardiolgist and he blamed my diabetes.

I then switched jobs which meant I lost my medical insurance for three months. In that three month period, I got worse and could not climb steps and had to start using a walker at my new job to keep from falling. My new insurance kicked in and I went to see a neurologist, had a nerve biopsy and nerve conductivity tests and was diagnosed with CIDP, a rare condition my sister has had for 6years now.


I was diagnosed late, and started a regimen of twice-a-month infusions of immunoglobulins called IV Ig infusions. I take 80 grams of Gammunex every two weeks now and have been for over a year. The disease is considered the chronic form of Guillen-Barre syndrome and the infusions seem to have arrested the progression of the disease.

CIDP is an autoimmune disease like MS. The immune system attacks the sheath that surrounds the nerve axion and distrupts the message from the spinal cord to the muscles, which in turn leads to quick muscle loss.

I feel that taking the Lipitor soomehow triggered my immune system into attacking the nerve sheaths, but can't find any research about this. My neurologist took me off of Liptor and has said for me to not take any statins anymore. My new cardiologist is understandig of this but will say nothing more.

I wanted to write all of this both as an update on my condition and to see if anyone else here has been diagnosed with the same or similar neuropathy.



Best regards,

TXBill
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Postby adec » Mon Nov 05, 2007 10:46 am

Hey TXBill. Stick around for a while. I just read your post and am having a busy day. But would like to eventually post a thoughtful response to you, most likely by tomorrow. I have already written a little on a similar subject in the main statins forum. Look for a post titled "Polyrdiculopathy." I believe there are certain supplements that could definitely help you.
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Postby adec » Tue Nov 06, 2007 7:19 am

I would strongly suggest trying these ten supplements for demyelinating diseases:

1. INOSINE has been shown to act as a strong neuroprotective, which can decrease inflammation and increase axonal growth.

2. FORSKOLIN has been shown to increase cyclic AMP or CAMP concentrations, and in turn this activates the proliferation of glial cells vital for proper nerve transmission. cAMP plays a very vital role in intracellular signaling.

3. ROYAL JELLY has been shown to increase GDNF or levels of glial cell line-derived neutropic factor in the hippocampus and cerebral cortex. This would act as a neuroprotective agent in neuronal axons.

4. ACETYL L-CARNITINE has been shown to increase NGF or nerve growth factor. This increases the critical proliferation of nerve cells and their survival.

5. COENZYME Q10... this one goes without saying.

6. MAGNESIUM has been proven to increase the structural integrity of nerve transmission.

7. RIBOSE has been proven to increase such important nucleotides such as AMP, ATP, and ADP. This can increase mitochondrial activity, and levels of cAMP or cyclic AMP.

8. MSM has been shown to increase permeability of cells, allowing these factors to penetrate deeper into the central and peripheral nervous system.

9. MANNITOL or MANNOSE has been shown to increase IGF-II or insulin-like growth factor, which plays an important role in nerve physiology and communication. MANNOSE is the foundation of all essential sugars.

???. GLUCOSAMINE and CHONDROITIN could theoretically help to decrease and inhibit glial scaring, thus increasing neuronal repair and growth.


Many of these ingredients can be had fairly cheaply in bulk powder form at beyond-a-century.com and bulknutrition.com. In supplement form, these can be had cheaply at Vitacost.com and their NSI house-brand. I just request that everyone trying these supplements report back on their progress, in order to potentially help others with the same condition.
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Postby imanut » Tue Nov 06, 2007 8:33 am

Bill----wow, exactly the same diagnosis----musta been the same quack that we went to. It took docs about 10 months to diagnose me--and I think the end result was they "guessed". They also did a spinal tap, and a nerve biopsy------of course, being inconclusive. For a period I couldn't stand up without help, could barely walk, couldn't grip anything with no strength, a baby could kill my hands by squeezing. And all the time, asking three different docs if the black box warning on Zocor, everything that I had in symptoms, could be related to what was happening to me. All of them said "nada".

B.S.

gn
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Postby imanut » Tue Nov 06, 2007 8:34 am

Oh yeah----ask your sister if she's on any kind of cholesterol meds.

gn
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Postby TXBill » Tue Nov 06, 2007 3:39 pm

[quote="imanut"]Oh yeah----ask your sister if she's on any kind of cholesterol meds.

gn[/quote]

Oh yeah we have been through that already and no she has not.

I don't think I really have CIDP because CIDP is supposed to affect both sides of the body nearly equally, but in my examination my left side was clearly worse. That's why they decided to do the nerve biopsy on my left ankle.

i have to admit i have gotten better with the IvIG treatments, but I have also lost nearly 100 lbs of fat and muscle. I can say with certainty that I am no longer getting worse.
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Postby imanut » Wed Nov 07, 2007 8:57 am

Actually there is some interesting reading on CIDP. I, also, don't think that I have it----but its on my med records now that I've been diagnosed.

From what I've read---CIDP is not hereditary--so you and your sis having "it" would be weird. CIDP does not have to be equal. Supposedly research reveals that it can be started by something as inocuous as a flu shot. And, in my case, reading descriptions of CIDP----MIRROR those on the black box warning of Zocor. In my situation, like yours---I could barely walk, a kid could kill me by squeezing my hand, etc------and all the docs said "no" on being caused by Zocor. I decided to "cold turkey" offf Zocor---and within two weeks I could at least walk again. The docs were pissed---but, oh well.

Now---effects of Zocor---or ANY statin drug, though probably not hereditary, could cause similar reaction in family members because of our genetic disposition

Merc, maker of Zocor, prints that ANY bad effects caused by Zocor would go completely away after discontinuing use. However, research has shown that not to be true----even though Zocor continues to deny that.

If, having CIDP were true----there are some things such as having flu shots that would definitely be contra-indicated-----------but, in doing my own research---I've taken flu shots and had NO effects from it.

Anyway-------good luck. Weird feeling foot after the nerve biopsy, huh???

gn
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Postby TXBill » Thu Nov 08, 2007 3:16 pm

[quote="imanut"]Actually there is some interesting reading on CIDP. I, also, don't think that I have it----but its on my med records now that I've been diagnosed.

From what I've read---CIDP is not hereditary--so you and your sis having "it" would be weird. CIDP does not have to be equal. Supposedly research reveals that it can be started by something as inocuous as a flu shot. And, in my case, reading descriptions of CIDP----MIRROR those on the black box warning of Zocor. In my situation, like yours---I could barely walk, a kid could kill me by squeezing my hand, etc------and all the docs said "no" on being caused by Zocor. I decided to "cold turkey" offf Zocor---and within two weeks I could at least walk again. The docs were pissed---but, oh well.

Now---effects of Zocor---or ANY statin drug, though probably not hereditary, could cause similar reaction in family members because of our genetic disposition

Merc, maker of Zocor, prints that ANY bad effects caused by Zocor would go completely away after discontinuing use. However, research has shown that not to be true----even though Zocor continues to deny that.

If, having CIDP were true----there are some things such as having flu shots that would definitely be contra-indicated-----------but, in doing my own research---I've taken flu shots and had NO effects from it.

Anyway-------good luck. Weird feeling foot after the nerve biopsy, huh???

gn[/quote]

OMG yes!! the left side of my left foot at the edge, right below my horrible little scar hurts almost all the time. I'm diabetic also so i ended up having to go to wound care every week for several weeks for the wound to finally heal. i wish I had not said yes to that but according to my dr., UnitedHealthCare might not have ponied up the bucks for my IvIG if not for the stupid nerve biopsy.



yes me and my sister both having it IS weird but SHE is convinced that hers was caused by one of the drugs she was taking, Remulcaid or Rheumacaid or something like that.

I did not really improve at all once off of the Lipitor. I really have not improved at all except for the weight loss and/or the IvIG. Who knows. i started wearing high top shoes to make up for my left droop foot. when i first got sick i could not lift the front part of my foot at all, and I could my right quite easily. Now i CAN lift my left foot somewhat and with the high-tops my foot does not catch on everything anymore.

i used to fall so much that my boss insisted i use a walker around the office. Since about two months ago i am back to using just my cane, and lots of times without that even, though i still do lose my balance. I remember about a year ago i would turn off the bathroom light in the work bathroom before i opened the door to exit and the second the light went off, i would hit the floor. that was a strange lesson.

so, yeah, i'm either getting used to this or i am getting better.
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Postby imanut » Fri Nov 09, 2007 11:48 am

I didn't mean to imply that I'm back to "normal". I just meant that I could walk again. I'm still feeling effects from the zocor---just not as bad as it was back then. My current docs still emphaatically state that it CAN'T be from zocor.

Good luck-----

gn
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Re: CIDP (Chronic Innflammatiry Demylineating Polynueropathy

Postby poohhel » Wed Nov 14, 2007 8:08 pm

[quote="TXBill"] I feel that taking the Lipitor soomehow triggered my immune system into attacking the nerve sheaths, but can't find any research about this. . . I wanted to write all of this both as an update on my condition and to see if anyone else here has been diagnosed with the same or similar neuropathy. Best regards, TXBill[/quote]

TXBill

I have not been diagnosed with this disease however, I strongly agree with the statins attacking the nerve sheaths... I was on Vytorin for 16 months and stopped taking it after waking up one morning to my entire body being numb and tingly like it was a sleep and could not wake up!

Previous to this incident, I had the same complaints of muscle weakness, not being able to climb stairs, exercise intolerance, and problems walking in general. After this big scare-- and NUMEROUS tests-- I have been diagnosed with 3 pinched nerves in my lower back, 2 in my neck, carpal tunnel in both wrist/hands and tarsal tunnel in both ankles/feet. Neurologist diagnosis-- Perpherial Neuropathy. I had Tarsal Tunnel Release on my left foot on 10/12/07 and I am scheduled to do my right foot on 11/30/07. I am also going to Physical therapy for my back, neck, and wrist. I wear carpal tunnel wrist braces at night while sleeping and while driving.
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Postby TXBill » Sun Nov 18, 2007 3:22 pm

Goodness gracious more peripheral neuropathy !



Mine started with extremely painful calf cramps.

Has anyone ever noted an increased chance of Congestive Heart Fauilre with statins?
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Postby Ray Holder » Sun Nov 18, 2007 4:39 pm

Hi TXBill
Zocor was very close to making my heart fail altogether 5 years ago. Fortunately I found out about Q10 and it halted the process. I have to take 800 mgs Q10 every day to keep the heart problem at bay, my blood pressure rises and angina occurs very soon after any reduction in my intake of top quality Q10, I have had the problems recur quickly when trying out other brands , apparently of the right dosage, but lacking in either quality or quantity.

I have just started to try some USA Q10 which contains the Kaneka Q10, which is what my rather expensive Pharmanord Q10 employs, so am hoping it will prove suitable and save a little cash on my rather large dosage need, (50% after international postage costs.)

Dr Langsjoen has stated that he sees 2 or 3 new cases each week of statin induced cardiomopathy in his cardiology practise each week.

Ray
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Postby Brian C. » Mon Nov 19, 2007 3:25 am

Statins are particularly good for business since, by the nature of their action, they will inevitably induce cardiomyopathy in the patient which is then treated with a cocktail of THREE more drugs.

This action, due to depletion of CoQ10, was established by the team under Folkers at Merck and resulted in two patents proprietal to Merck. Of course, these patents were quietly shelved since Merck was introducing a new diuretic, one of the three types of drug prescribed for heart failure treatment.

The Folker team, which had developed the fermentation method for manufacturing CoQ10, was broken up and their research and the process sold to Kaneka in Japan.

To this day the majority of doctors are unaware of the severity of the CoQ10 depletion problem because of the conspiracy of silence regarding this issue that began with Merck and is reinforced by the rest of the pharmaceutical industry. This industry perennially grooms leading medics to continue the silence and the funds available for such activity are huge.

Brian.
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