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» LymeNet Flash » Questions and Discussion » Medical Questions » If you've got european or japanese borrellia?

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Author Topic: If you've got european or japanese borrellia?
ohioperson22
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If you actually have one of the new japanese or european strains in you (and can't really know due to lack of resources/expertise/etc available to the average patient), do they respond to the same treatments as for regular lyme?

Even some unaffiliated infectious disease docs (whom are hated on these boards) acknowledge that the european strains are more likely to cause serious problems (for instance, neurological) than the north american B burgdorferi.

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bluelyme
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My kinesiologist has tester for garini and other ketes...same options for treatment...do you feel you have foriegn borrelia?

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Tincup
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Ohio said.. "Even some unaffiliated infectious disease docs (whom are hated on these boards) acknowledge that the european strains are more likely to cause serious problems (for instance, neurological) than the north american B burgdorferi."

They say that because for many years they didn't have the ability to control what had already been published by others in foreign countries, and hadn't made enough "friends" in European countries to bully into supporting their position.

By saying European strains can be worse they downplay the symptoms here, which fits in with their mis-information campaign and helps with their patents for tests, vaccines, etc.

Perfect example- Lyme ACA (Acrodermatitis chronica atrophicans). Said to be a manifestation of Lyme common in Europe and from European stains, but it is not found here.

Lyme ACA is proof positive Lyme is a chronic infection, so of course they don't want to admit it is here. By saying it isn't here, no one looks for it, misdiagnoses it in those affected with it, and patients are left to suffer.

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Tincup
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As for your treatment question- perfect example.

Idiot ducks in the USA have recently stated in publications that B. miyamotoi is treated like regular Lyme and treatment is successful. Hogwash!

They've done NO studies on it, have no proof that is true and as we all know 3-4 weeks of antibiotics doesn't always "cure Lyme". But they don't hesitate to take more and more grant money from tax-payers to try to fake evidence to support their sham reports.

Here is information (history and updates throughout) on B. miyamotoi. I've personally been keeping up on this strain and have watched the BIG IDIOTS manipulate the information as they did with Lyme disease. It's enough to make you sick to see what they are STILL getting away with.

https://sites.google.com/site/marylandlyme/tick-borne-diseases/borrelia-miyamotoi

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Jordana
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I've actually read the opposite. They're more concerned about tick borne encephalitis in Europe and think that Bb is a more severe infection.
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Rumigirl
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TC, does ACA, if one suspects that they have it (as I do), require a different treatment than Bb? If so, what treatment? Maybe that should be a different thread? Thank you!
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Phoiph
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ohioperson22...

I had the European neurological strain, Garinii. It was a severe, 8 year neurological hell, which didn't respond to "conventional" antibiotic or other treatment.

I became well through mHBOT.

I has been shown that different strains present different disease profiles.

Here's a couple of interesting articles on the subject:

Borrelia garinii in Seabird Ticks (Ixodes uriae), Atlantic Coast, North America
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3291351/

Discussion of seasonal and geographical relationships between MS, schizophrenia, and tick populations: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC149400/

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Tincup
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Hey Rumi,

The "older" European literature (before the appearance of the IDSA and their corruption) and even some newer articles say that it responds well to a penicillin based antibiotic. I've seen that to be true in patients and generally suggest using that approach. No complaints so far.

I don't expect it to be "cured", but controlled and manageable. Re-treatment may be necessary in times of flares or relapses.

One woman I know (a bad case) tried IV Rocephin for an extended period for "Lyme", but also had the ACA too, and it helped. No cure, but it did help.

The IDSA- say a prayer for all of us here- in their lousy guidelines say to use 3 weeks of doxy, the same they recommend for treating someone with a Lyme rash.

They say after their treatment protocol the rash eventually fades away, 2-6 months later.

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Tincup
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A study that shares some info and indicating some of the meds used for Lyme ACA.

Infection. 1996 Jan-Feb;24(1):85-7.

Success and failure in the treatment of acrodermatitis chronica atrophicans.

Aberer E1, Breier F, Stanek G, Schmidt B.

Author information

1Universitätsklinik für Dermatologie und Vernerologie, Graz, Austria.

Abstract

To determine the most effective treatment for acrodermatitis chronica atrophicans, several clinical trials were undertaken in recent years to evaluate whether a 2-week course of ceftriaxone would be superior to oral antibiotics.

Of the 46 patients suffering from acrodermatitis chronica atrophicans, 14 were treated with ceftriaxone 2g for 15 days.

The remaining patients received either oral penicillin V 1.5 million IU t.i.d. or doxycycline 100 mg b.i.d. for 20 to 30 days.

Patients were followed up for at least 1 year. Of the 14 ceftriaxone-treated patients four showed incomplete regression of the inflammatory skin changes after 6 to 12 months.

Two out of five patients who were monitored for Borrelia burgdorferi DNA excretion were still positive after 12 months as compared to none of six patients who were treated orally for 20-30 days.

Six out of 11 patients treated orally for only 20 days needed retreatment after 6 months because of continuing skin manifestations, neuropathy or arthralgia.

A 30-day duration of treatment with oral antibiotics and not the chosen antibiotic is crucial for curing acrodermatitis chronica atrophicans.

The duration of treatment with ceftriaxone needed for eradication of Borrelia in acrodermatitis chronica atrophicans has yet to be determined in future studies.

Link Here- http://www.ncbi.nlm.nih.gov/pubmed/8852478

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Tincup
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A 1950's study said one case was successfully treated with chloroquine phosphate given for 6 months. Interesting because that is a medication used to treat malaria, which enters the red blood cells to attack the organisms.

It was also reported to be successful for a Lupus skin manifestation.

Even that far back they associated Lyme ACA with a "collagen" disease.

Just looked up the medication. It said..

"Chloroquine is very dangerous in overdose. It is rapidly absorbed from the gut. In 1961, published studies showed three children who took overdoses died within 2.5 hours of taking the drug."

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Rumigirl
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Thank you, TC. I assume that one can have ACA without necessarily having the skin involvement, although with Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy, I do now have skin involvement, too.

Chloroquine, hasn't that been used for Babesia, too? If not, it would seem to be a med that might be good for it, albeit, you have to be careful of the retina. It reminds me of Plaquenil, but that's different.

Speaking of retinas, the 2 top Retinal Ophthalmologists in the world couldn't believe how my retinas are FILLED with lesions!!

They had never seen anything like it---even though one of them, the top guy anywhere, was in his 80's. Oh, joy (not!).

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Phoiph
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Rumigirl...

Acrodermatitis chronica atrophicans (ACA) actually means "chronic inflammation and atrophy of the skin", and relates specifically to the skin manifestations of late stage Borellia Afzelii or Borellia Garinii. It can also involve neuropathy.

So, although you can be infected with the type of Borellia that is associated with ACA, you don't actually have ACA without the skin involvement.

After being infected with Garinii for several years, I started to show signs of what appeared to be ACA. (Fortunately, this completely reversed.)

What symptoms of ACA are you experiencing, and how do you distinguish it from the RSD skin involvement?

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Brussels
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I got all my Borrelia here, and so did my daughter (Belgium, Germany, Switzerland).

We had both burgdorferi and garinii. We followed energetic tests, but at first, only Buhner and abx, same treatment as for any borrelia....

Lyme 'healed' with photons and burgdorferi nosodes. My daughter though still had an extra round of treatment with garini nosodes, I remember. My garinii went dormant without treatment...

The worst here, in my opinion, is the TBE (called FSME), which is the virus causing encephalitis. Much worse than borrelia.

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Rumigirl
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quote:
Originally posted by Phoiph:
Rumigirl...

Acrodermatitis chronica atrophicans (ACA) actually means "chronic inflammation and atrophy of the skin", and relates specifically to the skin manifestations of late stage Borellia Afzelii or Borellia Garinii. It can also involve neuropathy.

So, although you can be infected with the type of Borellia that is associated with ACA, you don't actually have ACA without the skin involvement.

After being infected with Garinii for several years, I started to show signs of what appeared to be ACA. (Fortunately, this completely reversed.)

What symptoms of ACA are you experiencing, and how do you distinguish it from the RSD skin involvement?

I just went on a site today and saw the photos of ACA trophic skin changes, and they look EXACTLY like the trophic skin changes that I have from CRPS/RSD!!! The CRPS/RSD is caused by the

TBD's anyway, in addition to injuries (which were also caused by TBD damage).

Tincup had previously said that she found that a lot of people who got their TBD's on the east coast shoreline, as I did, seemed to have these strains, carried by birds, I assume.

I also have the bony changes from CRPS/RSD and maybe ACA from Garinii/Azfelli. So far, I am really losing my battle with this. The pain is unendurable and only getting worse.

I also have well documented neuropathy of every part of the nervous system, which is NOT getting better, in spite of fighting it all for a very long time.

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Phoiph
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Sorry to hear that, Rumigirl. I also had constant, head to toe neuropathy that no pain killer would touch. It was beyond hell!

I was infected on Block Island, Rhode Island. The article I posted above discusses how Garinii is carried by seabirds along offshore islands of the Atlantic Coast. Where on the East Coast were you infected?

If you ever decide to pursue mHBOT, let me know; I will help you...

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Rumigirl
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I got mine in Montauk, ground zero for TBD's (& only 1 1/2 miles from Plum Island, right off Monatuk's coast). I had uncountable known tick bites every year (we didn't know it was a problem then). We burned them

off with a match (didn't know that was a problem either). I believe that my mother had it before I was even born.

I also spent a summer at Block Island, BTW. Beautiful! But way before I knew about TBD's. I was Miss Nature Girl back then, not knowing the dangers. But I had symptoms from when I was quite

young. "Bursitis" so bad that I couldn't walk, then couldn't crawl either. No one knew back then. The symptoms kept escalating, and we kept vacationing in Montauk, getting more & more tick bites.

Anyway, I've now had this Complex Regional Pain Syndrome, aka Reflex Sympathetic Dystrophy, now for over 2 years, having been misdiagnosed for so long that it was past the early stages when it

can be reversed more easily. It's hell alright!! I am at my wit's end with it. Nobody seems to know much, or care much (doctors, etc.). Insurance refuses to cover most of my pain meds and treatment meds.

I hear you Phoiph. I don't think one thing would be enough to turn this all around for me, and mHBOT may be something I need to do. I am just so overwhelmed right now. I can barely use my hands at all. Have no room (1 bedroom apt) filled with medical equipment, rife

machines, ozone machine, etc., and $$ a problem. Anyway, I've got to try something new/more, as I'm going down terribly. I have never forgotten your generous offer of help w/ mHBOT. Thank you!

To be continued . . .

What have you done, TC? The kind of meds you mention?

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Phoiph
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Rumigirl...

I think you might be interested in this video and article:

http://www.hbot.com/testimonial/hyperbaric-oxygen-treatment-reflex-sympathetic-dystrophy-syndrome-rsd

http://www.ncbi.nlm.nih.gov/pubmed/15174218

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