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buckwheat
09-15-2007, 10:22 PM
Hi Everyone,

These photo's look so much like RSD to me. Their is no accurate test to rule out something like this out. 99.9 percent of the MD's I have seen say RSD, but I really believe something broke the Blood Brain Barrier. I really could use your opinion on wheather this look's like RSD photo's to you. Much Love, Roz xxx

http://www.dermis.net/dermisroot/en/35111/diagnose.htm

Acrodermatitis chronica atrophicans is a dermatological condition that takes a chronically progressive course and finally leads to a widespread atrophy of the skin. Involvement of the peripheral nervous system is frequently observed, predominantly a sensory polyneuropathy. Acrodermatitis chronica atrophicans follows a peculiar geographical distribution forming clusters of high prevalence in certain regions. Acrodermatitis chronica atrophicans is a clinical manifestation of borreliosis, an infectious disease transmitted by ticks. Clinical manifestations of borreliosis are multiple. They most often affect the skin, nervous system, joints and heart. Cutaneous pseudolymphomas, erythema chronicum migrans of Afzelius, acrodermatitis chronica atrophicans of Pick-Herxheimer, meningo-radiculitis and various arthropathies are the most commonly encountered diseases




buckwheat
09-15-2007, 10:32 PM
I really need your opinion I really feel like I have some Chronic wasting disease, does anyone else feel this way? Jo what do you think as well? Much Love, Roz

PS My rear end is fine.

tayla4me
09-15-2007, 11:05 PM
Hi Roz,


They are certainly interesting photos with many features that look like the atrophied skin of RSD.
Because we all have such different signs and symptoms it would be too hard to just give an accurate diagnosis based on photo. Parts of my RSD looks like this at times but for me it is not so patchy but more generalised and somewhat transient in a couple of areas.
There is clear damage to the dermis in these photos and many RSD patients would not get to the point where that exists. For me also, oedema is more of a feature than in these photos .
If your RSD looks exactly like these Roz and you feel you could be part of the demographic who may be susceptible to this infection then I would defnitely ask for a tissue culture to be done to eliminate the fact that all your symptoms are in fact caused by this bug.
I have just read an article on it and I do agree there are some very similar features.
Perhaps when a doctor is investigating the possibility of RSD/CRPS in people that ACA should definitely be ruled out.
Very interesting stuff Roz----thanks for that:)
Cheers and luck
Tayla:hug:

wakegirl
09-15-2007, 11:09 PM
i cant say for certainty but some appear to present the more general appearance than others

buckwheat
09-15-2007, 11:16 PM
Dear Tayla,

Thanks for your wisdom. My RSD looked so much like these photos about 2 years ago. Of course my right limb looks worse now.

Tayla, to me none of these photos look exactly alike either. I had a tissue culture biospy, but like I said nothing will show up. Big Hugs, Roz:hug:

tayla4me
09-15-2007, 11:27 PM
Dear Tayla,

Thanks for your wisdom. My RSD looked so much like these photos about 2 years ago. Of course my right limb looks worse now. Big Hugs, Roz:hug:





Roz,

Have you presented this possibility to your doctor ? Gosh, how easy would it be if there were some definitive tests for RSD as there are for most other diseases. At this point in time it seems that RSD is really only diagnosed on a huge assortment of different of confusing signs and symptoms that vary in aetiology in everyone.
I would love the day when a pathology slip could be written with the request
"bloods for RSD/CRPS diagnosis" and then of course to have an abundance of well learned doctors to treat it.
I often wonder why for our 20 million population here in Australia the percentage of doctors who are nominating themselves as Pain Management Doctors who specialise in RSD and are willing to throw everything they can at getting you better, seems higher than in many other countries.
Having said that there are definitely some states here which are better served than others.
Heaps of luck Roz
Tayla:hug:

tayla4me
09-15-2007, 11:31 PM
Dear Tayla,

Thanks for your wisdom. My RSD looked so much like these photos about 2 years ago. Of course my right limb looks worse now.

Tayla, to me none of these photos look exactly alike either. I had a tissue culture biospy, but like I said nothing will show up. Big Hugs, Roz:hug:



Hi again Roz,

Is there no test that can confirm ACA?--I guess they must at some stage have been able to culture borreliosis----perhaps once the damage is done and the infection has died then all is left is the damage it has caused?:confused:
Tayla:hug:

buckwheat
09-15-2007, 11:32 PM
Hi Wake,

This is not a photo of the same person. Much Love, Roz

buckwheat
09-15-2007, 11:36 PM
Dear Tayla,

I have every SX of RSD except for the bone pain. Their are several strains of this through out the world. I am in the States now, which causes bone pain with this related organism. I do have a sharp MD that does believe me that something broke the BBB. She thought Euro, and had no clue I have a English background. Much Love, Roz

tayla4me
09-15-2007, 11:47 PM
Roz,

I guess if you have ever been to the area that this monster tick is then there will always be that thought:confused:
I reckon if you haven't ever been anywhere near "mr borreliosis" then you are probably not one of his victims-----Oh so confusing for you:(
Tayla:hug:

buckwheat
09-15-2007, 11:51 PM
Dear Tayla,

Their are 300 different strains of the borreliosis. Things like this can lay dormant for years and then just appear. I have 2 family members that are MD's, they are top notch. They really are.

When I got this RSD DX, I heard the I don't know very early on.:(

I was told to research, and do more research.

I am just a hair stylist. Much Love, Roz

buckwheat
09-15-2007, 11:52 PM
Hi Tayla,

The thing is, you can get this from a flea bite. Scary isn't it. Much Love, Roz xxx



I need to also add that 50 % of the people bitten never knew, because of no rash or signs at the time. It can lay dormant for years and then kick in.

tayla4me
09-15-2007, 11:57 PM
I am just a hair stylist.



Hey Roz,
Saying "just a hair stylist" is like saying "just a mum"
I'd be lost without my hairdresser, she is the cheapest counsellor I have ever been to:wink:
Hugs Tayla:hug:

buckwheat
09-16-2007, 12:51 AM
Hi again,

This is very similiar to late stage syphilis. The difference is the Neuro. SX do not come on as quick but it is much rougher to treat. Yes, this can come from a flea bite, mosquitoes etc...You can even be born with it. Like I mentioned before their are several strains of this, I believe some of the strains in the States do not have to have a rash.

If I have this or anyone else for that matter it is vital we try to get help. Much Love, Roz

buckwheat
09-16-2007, 05:05 PM
Hi Again What Got Me thinking about something breaking the Blood Brain Barrier are these 2 articles.

Does a Viral Infection Cause Complex T. Regional Pain Syndrome?

Hiroaki Kimura, MD, PhD, Assistant Prof.
Tomohiro Asou, MD

Department of Rehabilitation, Hiroshima University Hospital, 1-2-3 Kasumi, Minami-ku, Hiroshima, Japan 734-8551. Tel: +81-82-257-5566; Fax: +81-82-257-5594

In 1990 Omura, Y. reported that Herpes Simplex Virus Type 1 as the major cause of chronic intractable pain and its effective treatment using mixture of EPA & DHA with Selective Drug Uptake Enhancement Method. Subsequently among the other causes of pain, he included Chlamydia Trachomatis, Borrelia Burgdorferi, Mycobacterium Tuberculosis, human Herpes Virus type 6, and Circulatory Disturbances. In order to test possible involvement of viral infection in Complex Regional Pain Syndrome (CRPS), a disease which usually occurs in the extremities, we did a study of 17 patients with CRPS. They were examined for Herpes Simplex Virus (HSV) and Varicella Zoster Virus (VZV) by measuring IgG and IgM antibody titers, and 14 of these patients were also examined for Cytomegalo-Virus (CMV). As a control group 100 healthy Japanese employees at SRL, Inc. were also studied. In CRPS group, HSV IgG was positive in 12 of the 17 patients with an average antibody titer of 90.0 EIA value. VZV IgG was positive in all 17 patients with an average antibody titer of 26.8 EIA value. CMV IgG was positive in all 14 patients with an average antibody titer of 66.6 UA/ml. In control group, HSV IgG was positive in 54 subjects with an average antibody titer of 42.3 EIA value. VZV IgG was positive in 97 subjects with an average antibody titer of 26.2 EIA value. CMV IgG was positive in 82 subjects. There were no significant differences of positive rate of IgG antibody for the three viruses between patient and control groups. Although the difference was not significant, the average antibody titers of HSV in CRPS group were more than twice of those in healthy group. Antibody titers were almost equal in both groups for BZB. Possibly, some people in the control group who had latent virus, were also asymptomatic. In 2000, Takasaki, I. et al. In a separate animal study, inoculated with HSV Type-I the shin of the mouse causing allodynia and hyperalgesia (which are some of the characteristic findings seen in CRPS in humans). Also, VZV, which causes shingles which is sometimes followed by Post-Herpetic Neuralgia (PHN), is in the same family of HSV. As PHN resembles CRPS in symptoms, it is possible that HSV contributes to CRPS. Therefore, virus infection theory is an attractive hypothesis that accounts for many enigmas of CRPS.

Key Words: Complex regional pain syndrome (CRPS); Herpes simplex virus (HSV); Antibody titer; Enzyme immunoassay (EIA); Enzyme-linked fluorescent immunoassay (ELFA); Etiology

Address correspondence to Katsuhiro Toda, MD, PhD, (Present Address) Building 10/1N-118, 10 Center Drive Bethesda MD 20892 NIH/NIDCR/PNMB

buckwheat
09-16-2007, 05:15 PM
Hi Everyone,

Forgive me for not explaining myself better, my right limb doesn't do to well at times. I am in no way saying any of this could be the root of your problem. I am just trying to find a solution to this. Much Love, Roz xxx


Anitbiotic Protocal for the RSD.
http://www.wehelpwhathurts.homestead...257,1,Clinical

Desi
09-16-2007, 06:31 PM
A few of them did Roz. Especialy the hands, leg with that "shiney apperence look" The first one of the hand with the huge blister looked like it was infected!! Ouch!! Also some of these photo's look patchy like I believe Tayla said. Plus RSD is so different from person to person, different looks, different everything. well thanks for sharing those, Roz.. they were very interesting indeed! Love Ya~Desi

tayla4me
09-17-2007, 03:25 AM
Roz,

Thanks for that article. It was interesting and funny enough it brought up some topics I just covered with my physio at my visit (torture):(

I love chatting with him, he is such a fantastic person who has made a commitment to discovering as much as he can about RSD/CRPS and then passing on that knowledge in the form of treatment for his parents.
I wish I could share him with you all.

Like you Roz, I have chronic infections----I'll be a happy person if I can find the exact cause and then the treatment might follow but I am sure sick of living on high doses of nasty antibiotics.

Cheers Tayla:hug:

buckwheat
09-17-2007, 01:01 PM
Dear Tayla ,

Just a thought what about Bartonella in OZ. I am not leaving it out in my case for one second. It is much harder to get in Vet Medicine than Human Medical. Much Love, Roz

buckwheat
09-17-2007, 01:13 PM
Bartonella (formerly known as Rochalimaea) is a genus of Gram-negative bacteria. Facultative intracellular parasites, Bartonella species can infect healthy people but are considered especially important as opportunistic pathogens.[1] Bartonella are transmitted by insect vectors such as ticks, fleas, sand flies and mosquitoes. At least eight Bartonella species or subspecies are known to infect humans.[2] In June 2007, a new species under the genus, called Bartonella rochalimae, was discovered.[3] This is the sixth species known to infect humans, and the ninth species and subspecies, overall, known to infect humans.

http://en.wikipedia.org/wiki/Bartonella

On a serious note, I do think any country, wants to protect it's public from fear. Also no test is accurate for this type of thing. Unless a person has a brain biospy. But even at that level how accurate with be the labs?

buckwheat
09-17-2007, 01:22 PM
I am going to insist on a brain biopsy when I pass on, it will be off with my head just like Katherine.:)