[dshue]

So my cross country jaunts have continued in search of a medicine man with answers...

Unlike others, my Hopkins experience, very serious indeed in tone, was, well, just plain wrong on almost everything. This from a doctor called, literally by one of my now guys at UCSF, 'one of the gods of neurology'. Consider me agnostic at best.

Anyway, my gambol up to UCSF, where the docs have been good (administratively though, the absolute worst experience, which is saying a lot given the rather feckless nature of medical offices), have given me the 'I can't be certain, but...' lead that I 'have a postinfectuous immune mediated peripheral neuropathy, selectively affecting unmyelinated C fibers (with impaired heat perception)'.

My full body burning has left only my hands and feet free. My doc, in an interesting tac, suggests that my appendages have been spared because the neuropathy is, heretofore unrecognized, more severe in the hands and feet, and therefore the burning is not present. So hey, I guess they're dead already. Don't know about that one.

There are no real answers though, I know. The cocktail now is to up Mexilitine to 1200 mgs (with Lamictal warming up in the wings) along with Lyrica still at 600 mgs along with a handful of Effexor, and starting with fentanyl patches (leaving tramdol behind), with the suggestion of doing a fentanyl or lidocaine infusion soon, all the while waiting - my LA doc has his own lab, and at UCSF my doc is a big research guru - for at least five years they tell me for new treatments coming to fruition.

So if glentaj is out and about tonight, if you have a moment, could you enlighten me with your always elaborate wisdom on the above diagnosis. I know you've said you've had improvement in your immune related case. I'm post virus one year and not getting any better. What's been the course time-wise of your regeneration, as it were?

And anyone with experience with the patch or the infusions, hipping me to what to expect would also be much appreciated.

Thanks.

-- Dennis

[glenntaj]

--from my body-wide acute onset burning neuropathy has been long, and while there has been considerable improvement over years, as documented by successive skin biopsies and symptomatic impression--I'm now six years out from the "day which shall live in infamy" when this started (4/12/2003)--recovery is not complete, and is unlikely ever to be.

I certainly don't have the constant all-over body burning that I used to, but I'm still subject to flares. These may well be associated with attempts at nerve regrowth--it's common for nerves trying to re-grow and push through other tissue to produce odd sensations before the brain learns to intepret this as apart from damage and things quiet down again. And I'm very prone to any sort of compressive force producing parasthetic or numbness symptoms out of proportiion to the force. A lot of people with conditions that cause small-fiber dysfunction, especially diabetes/impaired glucose tolerance or celiac/gluten sensitivity, have rpeorted this too, even if the condition has been "arrested"--one simply doesn't seem to grow back all the smal lfiber sone has lost, and what fibers do grow back lead to a differenet configuration than that which one started with and which one's brain was used to intepreting.

Non-length dependent sensory neuropathies are relatively rare and very tricky to prognose. I know that some researchers who've studied people with such syndromes, which suggest selective loss of sensory ganglia, wil lnot go beyond saying that most such syndromes are self-limiting, in that one usually suspects an autoimmune molecular mimicry mechanism--the body mounts an immune respons to some pathogen, fights it off, but the now activated immune system goes after any tissue with a similar molecular structure, which varies individual to individual--and the reaction will burn out once most of those structures are destroyed. If these are fibers, some may have, in time, a chance to grow back. If these are ganglia cell bodies, though, they will not return (once you kill a cell it's dead), though if there are any live cells left, they may try to take over some of the function. This is why you often see the rubric "slow, patchy, incomplete recovery" attached to these syndromes. And the ability to actually document gangliar processes awaits better imaging technology, or, as Dr. Abhey Mogehkar, the Hopkins' researcher who has studied these and who I've corresponded with once joked, "your autopsy".

Sorry to be so inspecific here, but the understnading of such syndromes, even by the experts, is not as advanced as is understanding of other neuropathic processes. The key to recovery may be to find out if there is a controllable etiology, such as celiac/diabetes/a known autoimmune process, that may allow whatever recovery is possible if controlled.

[mrsD]

I am going to throw something out here:

I think one possibility--and this came up on our old PN board that preceded this one-- this that you may have Herpes Zoster
activation.

This is reactivated chickenpox virus. HZ remains in the ganglia along the spine and activate during certain types of stress.

For example my husband had a bee sting and his activated a week later in his ear and along his body (but not his limbs)

I came down with shingles when I was working midnights, and it was only on my right arm.

It is possible for HZ to not cause vesicles to erupt and therefore only cause pain. I have had several pain episodes along my neck and right arm since my eruption. They have slowly stopped after 10 yrs. My husband has had one pain episode since his.

Herpes can be tested for. There is a blood titre the doctor can measure. I suggest for all mysterious diagnosis patients here to have that test run. If very high, then some antiviral treatment may help. There are varying thoughts about HZ...some say that post herpetic neuralgia is incurable. But I think partial outbreaks can be sequestered with treatment.

This is a quote from the old board-- but I cannot put up a link to it because that old venue was not archived when it closed:
(not in archive page:
http://web.archive.org/web/200212261...ML/001395.html)
Here is the page with the index to show where this quote is from:
http://web.archive.org/web/200212261...tartpoint=4305
This should satisfy any legal issues involved with quoting this source.

henryyvonne
New Member
Posts: 2
From: Hong Kong
Registered: Sep 2000
posted November 16, 2000 02:05 AM

Mrsdoubtfyre - firstly many thanks for your advice - I am sorry that it has taken me so long to get back to you but I have been in London for 3 weeks of medical investigation followed by a move to Hong Kong.
I took 500mg of Famvir 3 times a day for 7 days. The doctor was very reluctant to prescribe it as he was convinced that the pain wasn't from post hepatic neuralgia because I had never had a rash. I told him that I had read, from more than one reliable source, that it was possible to have shingles without a rash. During the week of taking the Famvir the pain reduced by 90% and finally disappeared three weeks after finishing the course. Interestingly enough the three specialists in London backed up the shingles diagnosis.
It is bit too dramatic to say that your advice saved my life but it certainly gave me the correct treatment to stop the debilitating attacks that I was having.
Once again thank you - I really am SO grateful. With best wishes.

Certain dietary situations will enable herpes virus replication/activation. Foods high in arginine, and low in lysine seem to activate the herpes family. Trying l-lysine in amounts of about 2 grams a day may help. (Herpes uses arginine to replicate)
Here is a link to the food list:
http://www.globalherbalsupplies.com/...nformation.htm

A typical scenario we see in long term care facilities are patients with bedsores who are given arginine containing supplements to help heal them .... then they get shingles as a result of the high dose arginine!

Here is a medical paper to copy and give to your doctor in support of this possibility:

Neurology. 2001 Jul 24;57(2):351-4.
Related Articles, Links
Click here to read
Acute, chronic, and recurrent varicella zoster virus neuropathy without zoster rash.

Fox RJ, Galetta SL, Mahalingam R, Wellish M, Forghani B, Gilden DH.

Department of Neurology, University of Pennsylvania School of Medicine, Philadelphia, USA.

The authors report three patients with acute, chronic, and recurrent neuropathy associated with varicella zoster virus (VZV) infection but without zoster rash. CSF of all three patients contained VZV immunoglobulin G antibody, but not herpes simplex virus. In two patients, serum/CSF ratios of VZV immunoglobulin G were reduced compared to normal ratios for immunoglobulin G and albumin, and one patient also had VZV immunoglobulin M in CSF. All three patients received antiviral therapy and improved. The diagnosis of nervous system infection by VZV may be confirmed by the presence of antibody to VZV in CSF even without detectable VZV DNA.

Publication Types:

* Research Support, U.S. Gov't, P.H.S.


PMID: 11468330 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

Of course, one has to have had chickenpox in order to have post herpetic neuralgia. Some people have had mild forms when small and it might have been overlooked then. That is why the blood work is important. I can show zoster titres clearly.

[jannaw]

You know you just can't discount how important anti-virals are and how crafty and sneaky herpes zostrex is, my daughter at the age of 25 had the virus enter her bloodstream and systematically shut down her major organs. She was in a hospital in Tacoma where the ICU was played out like an episode of the Three Stooges. When she was near death a nurse said "I may get fired for this but get her out of here", we transferred her to University Of Wa. in Seattle and within four days she was off life support and screaming for food......She did so well they transferred her to the general floor where she contracted septic shock and didn't recover from that after a three week battle in the ICU. Before this happened I had no idea of the power of herpes in more than just mostly harmless viral episodes!
She was put on acyclivar(sp?) and that was what put the virus at bay, but they took a bunch of her blood for research because healthy young people just don't get sick and die from this. I am a zealot when it comes to rashes now, if they would have biopsied her strange little blisters on her feet they would have seen she was battling the virus that took her life before her heart, lungs, kidneys and liver were so damaged. I can't say enough about demanding to know what a rash is if you don't know.

[mrsD]

What is even scarier still.... you don't even have to have lesions!

I agree, alot of suffering comes from the herpes family.

[cyclelops]

Well, I am lurking here as i celebrate earth day indoors waiting for my GI to call. i have a stuck shift key, so the odd capitalization is not all cognitive, but lately, the old brain is not what it used to be either.

i just today saw an article saying they are treating huntingtons disease with minocycline...yup, an old tetracycline....and it slows progression....hmmmm.

i am not big proponent of plowing antibiotics into people, but, some of these low dose things that work like DMARDS, could they help?

i have the C fiber thing with heat impairment....i did not turn one spit of purple in that test except a few nanospots between my toes.

it has been years now and my ANA seems to finally be up there, beyond high. unlike you, i have no burning....my case is weird for SFN....unless, like you said, things are just dead.

Gosh, I wish you luck. I am glad your experience there was better than mine at Hopkins. I had such high hopes....and i didn't even leave a drop of blood there. i am sure that there are very good physicians at hopkins and if one wants to look me over again, and really think about my case, i would make the trip.....but that is the key...thinking. A lot of the conclusions the docs come to, we had in our minds before we went to see them. They were obvious and elementary. it is so good to get some one who really is willing to put all the data, from all the years together and think for a few days. perhaps that is expecting too much.

I would have a nervous breakdown negotiating southern CA, so i am stuck here in the heartland for a while....actually, i think I reached the end of the internet.

On this Earth Day, perhaps, we need to consider how much the environment has impacted our health. Sure a germ could have caused this, (i believe this in my case) and so could one of the 700 chemicals that linger in our bodies.

[Kitt]

Originally Posted by mrsD

What is even scarier still.... you don't even have to have lesions!

I agree, alot of suffering comes from the herpes family.

That's for sure. There is much suffering and you do not have to have lesions.

[dshue]

Originally Posted by mrsD

I am going to throw something out here:

I think one possibility--and this came up on our old PN board that preceded this one-- this that you may have Herpes Zoster
activation.

This is reactivated chickenpox virus. HZ remains in the ganglia along the spine and activate during certain types of stress.

For example my husband had a bee sting and his activated a week later in his ear and along his body (but not his limbs)

I came down with shingles when I was working midnights, and it was only on my right arm.

It is possible for HZ to not cause vesicles to erupt and therefore only cause pain. I have had several pain episodes along my neck and right arm since my eruption. They have slowly stopped after 10 yrs. My husband has had one pain episode since his.

Herpes can be tested for. There is a blood titre the doctor can measure. I suggest for all mysterious diagnosis patients here to have that test run. If very high, then some antiviral treatment may help. There are varying thoughts about HZ...some say that post herpetic neuralgia is incurable. But I think partial outbreaks can be sequestered with treatment.

This is a quote from the old board-- but I cannot put up a link to it because that old venue was not archived when it closed:
(not in archive page:
http://web.archive.org/web/200212261...ML/001395.html)
Here is the page with the index to show where this quote is from:
http://web.archive.org/web/200212261...tartpoint=4305
This should satisfy any legal issues involved with quoting this source.


Certain dietary situations will enable herpes virus replication/activation. Foods high in arginine, and low in lysine seem to activate the herpes family. Trying l-lysine in amounts of about 2 grams a day may help. (Herpes uses arginine to replicate)
Here is a link to the food list:
http://www.globalherbalsupplies.com/...nformation.htm

A typical scenario we see in long term care facilities are patients with bedsores who are given arginine containing supplements to help heal them .... then they get shingles as a result of the high dose arginine!

Here is a medical paper to copy and give to your doctor in support of this possibility:

from http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

Of course, one has to have had chickenpox in order to have post herpetic neuralgia. Some people have had mild forms when small and it might have been overlooked then. That is why the blood work is important. I can show zoster titres clearly.

Hey --

mrsD, thanks as always for all the information. There is alway more of it, and more relevant at that, than a lot of doctor's visits. You should come up with a fee schedule...

Anyway, I looked into the Herpes angle (oh, and I, oddly, didn't have chicken pox until I was 24), and after extensive, really extensive, blood testing, the only red flags that came up were my C3d Immune Complex at 71, and then in retesting at 42. My HSV-1 IgG Ab came in at 4.24 and then 3.82. But my HSV-2 IgG Ab was 0.03, and then 0.06. The docs I've had look at these tests have thought there was nothing there to pursue.

With respect to those first numbers, I've been taking Valtrex as needed. Can't say it's made any difference.

With the above, is there anything else to consider, or do you thing I'm in the clear?

Thanks again

[ras1256]

Jannaw, I am so sorry to hear the sorrow you've had to suffer!

The herpes zostrex was suggested to me by a forum poster, and I did mention it to my neuro. My shingles blood test was positive.

After reading your story, I do believe I am going to push a little harder for the antiviral trial round. I have a rash that was not identified by either my PCP or my dermatologist. They both gave me topical steroid-one cream, one ointment, which seem to help slightly.

Bless you for having the compassion to pass your story on to help others.

You must be an angel.

Originally Posted by jannaw

You know you just can't discount how important anti-virals are and how crafty and sneaky herpes zostrex is, my daughter at the age of 25 had the virus enter her bloodstream and systematically shut down her major organs. She was in a hospital in Tacoma where the ICU was played out like an episode of the Three Stooges. When she was near death a nurse said "I may get fired for this but get her out of here", we transferred her to University Of Wa. in Seattle and within four days she was off life support and screaming for food......She did so well they transferred her to the general floor where she contracted septic shock and didn't recover from that after a three week battle in the ICU. Before this happened I had no idea of the power of herpes in more than just mostly harmless viral episodes!
She was put on acyclivar(sp?) and that was what put the virus at bay, but they took a bunch of her blood for research because healthy young people just don't get sick and die from this. I am a zealot when it comes to rashes now, if they would have biopsied her strange little blisters on her feet they would have seen she was battling the virus that took her life before her heart, lungs, kidneys and liver were so damaged. I can't say enough about demanding to know what a rash is if you don't know.

[mrsD]

Originally Posted by dshue

Hey --

mrsD, thanks as always for all the information. There is alway more of it, and more relevant at that, than a lot of doctor's visits. You should come up with a fee schedule...

Anyway, I looked into the Herpes angle (oh, and I, oddly, didn't have chicken pox until I was 24), and after extensive, really extensive, blood testing, the only red flags that came up were my C3d Immune Complex at 71, and then in retesting at 42. My HSV-1 IgG Ab came in at 4.24 and then 3.82. But my HSV-2 IgG Ab was 0.03, and then 0.06. The docs I've had look at these tests have thought there was nothing there to pursue.

With respect to those first numbers, I've been taking Valtrex as needed. Can't say it's made any difference.

With the above, is there anything else to consider, or do you thing I'm in the clear?

Thanks again

Looks like you had herpes simplex 1 and 2 tested, but not
the herpes zoster? They are all different, you know.

When you say prn Valtrex... how exactly do you use it? If you don't take enough for long enough, the zoster never goes down.
http://en.wikipedia.org/wiki/Herpes_zoster

Also you can try l-lysine 2 grams a day to see if that helps.