Time For Me to Get A NeuroTalk Update
 

I joined NeuroTalk last summer, after I was diagnosed with Small Fiber Neuropathy. Following the many good recommendations of the forum, I started taking supplements. Now, I'd like to review what I'm taking, report on changes, and open the floor for comments.

This is what I am currently taking:

A multiple vitamin
R-Lipoic Acid 100 mg
Q-Absorb (Co-Q10) 300 mg
Magnesium Optomizer: Magnesium 200 mg, Potassium 100 mg, Taurine 600 mg
Ecotrin (asperin) 81 mg
Vitamin D3 4000 IU
Schiff MegaRed (Krill oil) 900 mg
Benfotiamine 150 mg
L-Lysine 1000 mg
Acetyl L-Carnitine 1000 mg
L-Arginine 1000 mg
L-Ornithine 500 mg
Methylcobalamin 5000 mcg
D-Ribose 5 g to 40 g per day


Throughout the Fall 2010, I experienced improvement. For example, 95% of my terrible night foot cramps went away. My skin burning sensation also decreased. Around December, I decided to delete the L-Lysine and see if I could get by without it. Burning sensation flared up again, so I went back to L-Lysine, but I have not been able to return to the low level of symptoms that I previously had.

mrsD often advises to consider diet, food, behavior, and other things that might act as "triggers." With regard to my diet, I have been off wheat, yeast, sugar, legumes, garlic, onion since 1998. I do not notice that I have problems with nightshades, specifically potatoes and tomatoes. They seem to be okay for me. I try to exercise — mostly walking — as much as my chronic fatigue will allow. My biggest trigger seems to be stress, especially having to do with money and finances. Generally, I have the sense that my symptoms are getting worse because the burning is spreading to new parts of my body.

So.

Because it's possible that I am taking too much or too little of the above supplements, or that I am missing something altogether, I would appreciate your response and comment.

Thanks in advance!

I am suspecting you have a viral problem.

Try stopping the arginine/citrulline all together, and restarting the lysine. If this helps, that will clinch it me for at least.

Will do!

I gather that you mean Arginine/Ornithine (which comes in one tablet), not Arginine/Citrulline. I only stated taking these recently, but, as you say, we'll see if deleting them makes a change.

Thanks again!

PMI, What would a supplement have to do with a virus?

Certain viruses (esp of the Herpes family of which there are many) use Arginine to replicate.

Many many people are infected with Herpes... up to 95% with simplex alone. Then there are the Zoster people...those who had chicken pox when younger (me for example).

When someone consumes high arginine containing foods, or supplements, this can activate the virus which lives in nerves.
Then symptoms occur. Infection with Herpes viruses are for LIFE. They live in the dorsal ganglia of the spinal cord.

That is why I don't put up arginine data more often ...it is a common recommendation now for hypertension, as well as erectile dysfunctions. I am suspect of high arginine without balancing the lysine. Lysine quiets viral replication when ratios become unbalanced.

Will agree on the Arginine causing problems. I take only Lysine 1000mg 2x per day and that keeps things right. I have come to the conclusion that at least in my case either the virus or toxin(along with the Prevacid and other pharmaceuticals I was prescribed)or combination of both weakened and damaged my endocrine system and especially my adrenal function. Taking things like glandular supplements and herbs like Ashwaghanda that boost adrenals and things like colostrum and herbs Ecklonia Cava that boost growth hormone will usually squash symptoms. In addition I have starting suppementing with extra zinc, manganese, copper and have found an extra boost from that. In my mind, anything that suppresses adrenal function as well as your gender specific optimum hormone levels(testosterone, DHT and estrogen) is highly detrimental to neuropathy. According to a natural doctor I saw in the past, most tests at conventional doctors don't test right for thyroid or adrenal function and really fuzz on hormones in general.

Mrs D,

this is very interesting. i have had HSV-2 since 1979, initially the burning pain i got was similar to what i used to experience before getting an outbreak of herpes. since developing PN i have had very few outbreaks of herpes. this could simply be because i am generally healthier. i asked the Neuros about HSV-2 being a part of the problem and they said no. i couldn't find much on the net about it either. do you have any more info?

I believe the Herpes family lives in the dorsal root ganglia.

We had a paper posted here about that once. I'll try and find it for you.

Postherpetic neuralgia arises from H. Zoster infection. It is a very well known entity.

There are many things most doctors are unaware of, since they don't look for updated research. (unless forced to for continuing education relicensure).

Some papers I found just now quickly:

http://www.ncbi.nlm.nih.gov/pubmed/1665505

http://www.ncbi.nlm.nih.gov/pubmed/2833203

http://jvi.asm.org/cgi/content/short/85/6/3030

Search Herpes virus dorsal root ganglia... for more.

The paper I recall said that some people were more prone genetically for this type of nerve damage with pain. Not all people with HV develop the dorsal root problem, therefore. The article was about stem cell treatment to repair the genetic deficiency so symptoms would abate.

Here is the article:

http://www.sciencedaily.com/releases...0615171509.htm

It is about gene therapy for the dorsal root ganglia...but it has not generalized to humans yet.

I cannot say that there has been much change since I stopped the l-arginine.



On another note, what amounts of choline (sometimes marketed as citicoline) should I be taking? My multi-vitamin is only giving me 35 mg of Choline (bitartrate).

Two eggs with yolks should do it for you.

DRSWAMI
I too have HSV2 (also since 1979). I now have PN and Erythromelalgia. The ERY was just diagnosed by the head doctor of the pain clinic at UW. This particular doctor made special note that I have HSV2 among other things. He is currently doing extensive blood tests, etc. I don't have a follow up visit until mid-July so will report more on this topic later should he.

I too am experiencing similar nerve pain to the kind I used to get before each outbreak so naturally I believe that this long term HSV condition has contributed to my current diagnosis. My outbreaks of HSV used to happen with my cycle each month, I was almost not ever free from this crippling condition. Once Acyclovir was on the market I began taking different forms of it and I did get good relief. Went to just a few outbreaks a year, which was good.

Now I worry that long term use of Acyclovir could have poisoned my system leaving me with this horrible and incredibly painful condition. Of course I have no proof yet so if it is confirmed I will definitely report back as this could be affecting many.

I would love to hear from others who have lived with HSV2 and now have PN. This would be good supporting information I could take to my doctor on my next visit. I think the doctors can use all the help they can get, hope they feel the same way because I am all about gathering information.

It is really possible your HSV is activating and causing grief.

I would be taking L-lysine if I were you. We both use it at home for our shingles pain...which both of us got last week! Spring seems especially difficult for us.

I haven't seen the Acyclovir or Valcyclovir showing up on PN lists.

But the HIV antivirals have been known for a LONG time as causing PN.
Some are on this list:
http://www.wrongdiagnosis.com/n/neuropathy/subtypes.htm

mrsD
Many thanks for your response, your reply gives me hope. If you wouldn't mind answering a couple more questions I would really appreciate it but let me first say that I am very sorry you are suffering with Shingles. I know how very painful it is. I hope you feel better soon.

A little background: Early on I did take Lysine but since it didn't help keep the "attacks" away I assumed it didn't work and I have just never gotten back to it. I bought some today and will start immediately. Also, when I can tell I am about to have a Herpes outbreak I up my dosage of Acyclovir which in my current condition is most likely exacerbating all my symtoms. That has been the situation this week and I have been in terrific pain this week.

1.How much Lysine do you recommend per day?
2.If you were me would you wean yourself off the Acyclovir?
3.If this is the cause of my PN and Lysine helps, do you think my symptoms will go away and or improve or once damaged it's too late for help?

Even if it doesn't help it sounds like I need to get off the med's.....it's funny (not ha ha) now looking back to when I first started this med, I remember asking the doctor if this drug might have long term side effects. I was convinced it was safe to use. I was kidding myself but I was in so much pain several times a month due to the Herpes that I would have believed anything.

I specifically asked two doctors if they could attribute my PN to long term use of Acyclovir and both emphatically said NO. No discussion, no nothing, just no the med's do not cause this.........I'm more than a little frustrated with the medical community. I will take the information you provided me with to my followup with my new "pain" doctor however I don't see him until mid July. Ugh!

I cannot begin to tell you how much finding this "site" has meant to me. I will be forever grateful. mrsD, you are like this little guardian angel just hovering over everyone trying to make sure we are all going in the right direction. I haven't yet begun to fully understand my condition but at least now I a place to go for help.

Please take care and my prayers are with you all.

I need a clarification:

Does shingles cause permanent nerve damage? It sounds like the virus causes inflammation, which in turn causes symptoms, but not necessarily permanent nerve damage. Granted that you can't get rid of the virus once you have it, but, if there is no damage to the nerves beyond acute inflammation or irritation, then that gives me a different way to think about this.

Thanks.

My understanding is that untreated shingles, may result in nerve damage. In fact there is no guarantee that treatment may prevent damage in all patients.

The Herpes Zoster virus continues to live in the body, forever.
It can activate if the immune system keeping is dormant changes, as in Chemo, or infections like pneumonia. It uses l-arginine amino acid to replicate. So high unbalanced arginine is thought to provoke attacks.

It lives in the dorsal root ganglia along the spine.

My shingles came from the stress of working midnights. It took a year of this shift work to result. Hubby's came from a hornet sting. A week after the sting, he had a severe case of shingles.

I personally believe that some PN's and other chronic pain may be traced to viral activity in the dorsal root ganglia. My shingles area was activated by a muscle massage... I couldn't move for 3 days, my neck was so sore, and my arm! I did not get blisters that time, but boy, the pain was horrific!

Man, I'm burning up. Don't know why my symptoms have taken such a turn for the worse these past two months, but they have.

I've been eating well and sticking to 45-60 mins. of exercise (walking or bicycling) each day. My sleep is not too bad, considering that insomnia is as likely as not. And I've been staying with the supplements.




mrsD, you say untreated shingles may result in nerve damage. What treatment? Valtrex or such like?

I would get tested for both Herpes viruses, to see if you have elevated levels.

Yes, Valtrex may help. Have you tried using cold packs along the spine? That often helps too. 20min tops in one area though and protect the skin. I typically do twice a day if I have problems that I think are shingles related.

If the supplements are not working at all for you, I'd stop everything for a while and see what happens. We are having heat in most of the country, and I know my feet are not doing well this weekend either.

I'd stick with the lysine however, until you get tested.

mrsD, I've been tested for Herpes. I did not produce a positive test for HSV-1 or HSV-2. After I developed some neuralgia, they decided it must be Zoster. However, none of my neuralgia symptoms were exactly typical of Zoster. Two years later, with weird symptoms showing up, like foot pain, I was diagnosed with Small Fiber Neuropathy.

I need the magnesium for foot cramping. What dose of lysine do you suggest? In the past, I have seen you suggest 500 mg, then, in other cases, up to 3000 mg.

Thanks!

Start at 500mg a day and see if you feel better. Give that a week and then increase to 1 gram a day, and do that for a week, and see if there is any improvement. Sometimes the improvement takes a while, and may occur at lower doses. But some people do go up to 3 grams a day in some cases.

Some only use the higher doses for symptoms, and lower doses for coasting in between attacks.

When I had my Herpes tests, they did both simplex together, and a separate one for zoster. It was my Zoster titres that were really high, and nothing much at all for Simplex.

I've been on 1000 mg of lysine for several weeks. Today, I bumped it up to 2000 mg.

Thanks!

Updates & Notes:

June 16: Was having some digestion problems. And the usual, ongoing exhaustion. Stopped all supplements except multi-vitamin. Also have been taking 2000 mg cordyceps and 130 mg DMAE. These are alleged to improve mental clarity.

June 20: No change in digestion problems, but, to my surprise, nothing worsened with my PN. Added in 10 g d-ribose.

June 21-24: Went up to 15 g d-ribose. Somewhere between 10 g and 15 g d-ribose, I began to recover my energy. For example, I woke up before the alarm and got out of bed. I did some long-postponed paperwork. I cleaned the inside of the refrigerator. I was like Lazarus back from the dead.

June 30: Mild return of left foot cramping at night and that weird stagger walk first thing in the morning. Added back 100 mg magnesium. Won't add it again tomorrow.

July 1: Still on 15 g d-ribose. Losing a little bit of the energy, but I'm hoping not to relapse. Worsened stagger walking in the morning. Added 500 g L-lysine. Won't add it again tomorrow.



Lab Tests Results, June 24:

Hermatology: Everything normal except RBC 4.21; HGB 13.3; HCT 38.8; MCH 31.6. I need someone to tell me what these things are.

Chemistry: Everything normal, including Uric Acid 4.0.

Immunoassays:
TSH 3.1 (Don't know what that is.)
B12 985.0 (This is "High," yes?)
Folate 18.4

Miscellaneous:
TIBC 425 (Don't know what that is.)

My doctor views these results as "Normal" and has no interest in follow up at this time.

The thyroid is not normal based on the new scale which goes up to 3.0 for normal. The old scale is still used, which goes up to 5.0.

Some doctors are not using the new lower scale. So it may be you are borderline hypo... you can search this on Google yourself.
It is a difficult place to be, dependent on what one doctor vs another may say.

Here is an article about this range and the controversy:
http://thyroid.about.com/od/getteste...altshlevel.htm

A borderline hypothyroidism is causing catastrophic and devastating fatigue? You may very well be right, but that's going to be a hard sell to most M.D.s. Indeed, the lack of clarity with regard to my symptoms is frustrating even to me.

I guess I will have to find an endocrinologist this summer.

Thanks again, mrsD. I'm very grateful for your help.

Yes, fatigue is one. Also skin color changes...orange/yellow deposits in palms and feet.
Hair loss, loss on arms and legs where it used to be heavier.
Puffy skin, fluid retention under the skin leading to pitting edema.
Tingling hands and feet. Cold intolerance. Brain fog.
Any swelling in the neck (goiter or nodules).

I had borderline TSH elevation... and very orange hands/feet. This is from the failure of betacarotene conversion to Vit A in the liver. It is one sign of hypothyroidism. (we eat alot of veggies). And I had a modest goiter too.

I had a thyroidectomy last year for Grave's Disease they were unable to control, then I spent 6 months with a TSH of 20 and virtually no T3. I had hashimotos. My hair fell out, my skin flaked and I was tripping all over, periorbital edema. Started about the time my legs and ankles weakened with the PN, actually I thought it was just the thyroid. Got my synthoid increased after asking my endo doc to do blood work after 2 months of begging and pleading. Took a couple of months to normalize.

I am also astonished to see the hepes zoster info. I do not take Lycine, but I will now. I have had 6 documented cases of zoster in 10 yrs. It lives in the base of the spine forever. Basically my immune system does not know what it is doing. Last outbreak was my eye last Oct and I had it on the toes of my dropped foot in Jan. I thought this might have contributed to my PN, but neuro doc says no because my spinal tap was neg for HZ. She did put me in Valtrex 1 gm three times a day. Started this last monday. I do have the residual pain at times.

Thank you so much for the links. I am out the door for the supplements.

mrsD,
forgot to add that at the time of the TSH of 20 and HZ on foot, I was deficient in B12. Level normal now, but switching to sl after what I've learned.

@Nervous...

I was hypo for several years. It became worse after the birth of my son when I was 34.

I had an episode of stress at work, and thought it was my heart, and went for a full work up at my doctor's. The only thing she found was the borderline thyroid. Sent me to an endocrinologist who told me right off it was all in my head. Looked at my orange hands, and felt my neck... and ordered a radio-uptake scan at my insistence. It came back very abnormal, and that is how I got my treatment finally (after another wait of 6mos). All that is missing from this story is putting a gun to his head to get treatment! He made me wait 6months too, and come back if I wasn't better...which I wasn't and THEN he gave me the Synthroid. I have to wonder why more doctors don't get assaulted by patients when they are this obtuse and arrogant!

So yes, JB is right...you have to beg and plead. It really should NOT be this way. I vent my frustration and anger more constructively, by coming here and warning others of this medical problem and horrible attitude some doctors have toward their patients with real thyroid malfunctions!

So glad you wrote this. The reason why my FORMER endo did not test me right away was he felt my initial dose of synthroid was just fine. Surgery was in April, levels were checked in the following Dec. When I saw him in the office after demanding an appt that took months, I was bloated out, bald, no body hair, 10 pound wt gain in 3 weeks, seriously bad eyes, fat pads in my face. He asked me 6 times in 15 mins if I had any "life changes" because I obviously had a depression problem, not an endo problem. Then he asked my husband if I was depressed and told me my weight gain was from holiday feasting. The following week he called with the TSH level of 20 and an apology, increased my med dose, and promptly got fired.

@Nervous, advocate for your health, become the leader of your health care team. Don't forget the doc works for you, you pay him.

This situation with doctors has made me turn away. I haven't got the fight left in me. Plus, I have never won any of the arguments. What happens to me is that I get thrown out of their office. Literally.

What is a radio-uptake scan? Aside from the blood test above, what other tests should I have to get an absolute answer as to whether or not I have hypothyroidism?

Thanks!

TSH, free t4, t3, ultrasound of the thyroid, thyroid antibody tests. There is also a Hashimoto's Antibody they test for in comprehensive neuro exams.

I had all the typical T3 and T4 tests, and the Hashimoto antibodies..all negative.

The radioactive uptake uses Technicium isotope injected into a vein and then the thyroid is watched with a plate that counts the radioactive decay of each particle. Since they know how much went in, the plate measures what comes out, and where it is concentrated. As it turned out my left lobe was mostly dead and the right was 50% enlarged. Because of this result ONLY I obtained the hormone. It was easy to see my neck was enlarged and the doctor did feel that. He was just reluctant to admit I was right and he was not. When the test results came back, he wouldn't even look at me... only at his desk.

I used him to stabilize me at 75mcg which took about 2 yrs, and then I went back to my doctor--and took my records. We keep my TSH between 1 and 2, and so far I haven't needed an increase in the past 7 years.

I can understand being tired and fed up. This is a very common reaction. But someday you will find the anger and then follow thru. If I hadn't had my background, and training, I would have probably walked away....but I wasn't going to give up easily. I did wait the painful 6mos which now I think was sadistic on his part ... now I don't think I would have been that docile either!

One thing you might do, Nervous, is go to a holistic doctor who does alternative thyroid therapies. These did not exist when I did my intervention. Today they are more common.

That radioactive uptake test sounds invasive. I'll do it, if necessary, but not my cup of tea. I'll also look into holistic alternatives.

It sounds like M.D.s are reluctant to prescribe thyroid hormone medication. Why? Is there great risk?

The thyroid contols metabolism and like all such drugs, it has been abused by people who take too much of the medication to lose weight. Too much can lead to increased heart rate, nervousness, blood pressure, and medication induced Graves's Disease with eye problems. There have also been cases of medication induced thyroid storms which are life threatening.

Abuse aside, it is a relatively safe drug that has been around forever and requires a bit of monitoring via blood work until a stable level has been demonstrated.

@ JB: I just read that once you start thyroid hormone medication, your thyroid stops producing the hormone naturally and you have to be on the replacment for life, no going back.


????

@Nervous,
Where did you read that? It does not sound right at all. Replacement is adjusted to how much you make, body weight and how much you need to reach a stable blood level. Of course once started it cannot be abruptly stopped without medical supervision as symptoms will return. Your thyroid will only stop producing if you have a disease or condition that is progressive. It is a supplement unless you have a total thyroidectomy, then it is a permanent replacement for life. Some people have part of their thyroids removed and take lower doses, but the remaining thyroid still functions. Of course there is always the odd rarity that may occur.

"Once replacement therapy begins, the thyroid will stop producing hormones all together, and replacement must be continued for life. "

see --- >>> http://www.drweil.com/drw/u/ART03192...hyroidism.html

under "What is the conventional treatment?"

@Nervous,
Synthroid is the brand name for conventional treatment.
Well, I like Dr. Weil and I stand corrected if he is right about this. I checked the PDR and did not find anything about the gland turning off. Thyroid Stimulating Hormone sends a signal to the pituitary gland to signal the gland to get to work. If it can't make enough hormone, the TSH increases and this indicates a supplement is needed. Adding the supplement tells the pituitary that the need is met and the TSH will drop. Stop the synthoid and the pituitary sends out increased TSH. It is a balacing act. If what Dr. Weil says is correct, I do not know how partial thyroidectomies work. They would require the same amt of meds as a total thyroidectomy, which they don't. The preseved gland helps to meet the need and less medication is needed. It is why docs try to leave some of the gland behind. I am no MD but have have extensive health care background. I will surely look further into this as you have brought to my attention another opinion. I have been through this. I had to lose my entire thyroid due to Grave's Disease and went through many discussions with my docs and surgeon about trying to save part of my gland so I would have some function. Currently I am on 150 micrograms of synthoid and am controlled at last. I am one who has to take the drug for the rest of my life. Thanks for the link. I will definately look into this.

Well @Nervous, I looked everywhere and read the pharmakinetics of synthoid and could not find anything about it permanently destroying function of the thyroid. Synthroid is even used to treat Hashimoto's Thyroiditis to reduce the size of the goiter which may require several months to do and can then be discontinued. Most of what I read is that if you need it for a deficiency, you need it for life with very few exceptions such as the one mentioned, so I guess not to many people have been taken off the meds to be studied and it did not appear in the old rat studies.

Dr. Weil is a naturalist. I followed some of his advice during my bouts with cancer and found him to be credible. I still have his books. Maybe he is more enlightened than most.

Did you notice that Weil also thinks that certain vegetables may be contra-indicated for hypothyroidism?

"Some foods, especially cruciferous vegetables (cabbage, kale, Brussels sprouts, broccoli, and cauliflower) contain natural goitrogens, compounds that can cause the thyroid gland to enlarge by interfering with thyroid hormone synthesis."