[Structure of progressive forms of tick-borne encephalitis]

[Article in Russian]

Umanekii KG, Dekonenko EP.

On the basis of long-term follow up (from 2 to 22 years) of 175 patients with various syndromes of progressive forms of tick-borne encephalitis (TBE), evaluation criteria of TBE progression are systematized. Two basic forms of disease progression are identified: amyotrophic and hyperkinetic, each of them breaking down into a series of leading syndromes. Important for characterizing progressive forms of tick-borne encephalitis (PFTBE) are the time when the disease began to progress and the pattern of progression as well as its stage and severity. PFTBE are correlated with the acute period syndromes. In long-term follow-up, 68% of patients with PFTBE display transformation of clinical forms of the disease, with the formation of the lateral amyotrophic sclerosis syndrome in the overwhelming majority of these patients.

PMID: 6414202 [PubMed - indexed for MEDLINE]

Maybe I should have made myself alittle clearer with regards to my comment:

It's scary because they are not sure that ABX ever correctly clears the pathogen in totality--and if it does, what amount of neuro-damage---at this advanced stage in the game, can be reversed??

We're not just talking Lyme like illness here---this is multiple system atrophy

Research Shy-Drager syndrome--and see how much it resembles ALS

Encephalitis = Inflammation of the brain.
http://www.cdc.gov/travel/diseases/tickenceph.htm

I dont get hung up on there names for things that cause the swelling Whos to say its not some form of Lyme Bb????

I wasn't commenting on KrazyKat's medical condition-----just what the abstract is saying

To my knowledge any type of TBD can cause swelling--as can alot of other infections, even EBV, ect.

Thank god in most patients, it's fairly minimal

The more you research these diseases---the more you realize that they are thrash can DX's( like MS, Lupus,ect.)---and that there are many infectious agents that can underlye these sypmtoms--possiably even combinations of infectious agents.

Only reason I brought up Shy-Drager ayndrome---quite a few folks that I have known were DX.ed with ALS---including my old boss'
father, and later found out it was Shy-Drager--not a great dx., but I guess, better than ALS.

Let me put it this way---Bob is still alive, and in exactly the same condition that he was 16 yrs ago when he was told to go home and get his affairs in order--you have ALS, and have about 2 yrs left to live.

And yes, he's been treated for lyme---totally out-of-pocket by the famous Dr. B, just to be sure that it wasn't the lyme causing it---since I bugged him to death till he when in for testing

Never had a positive test, and never did experince a herx, but does feel much better( mentally) that he did what he felt was nessacary to try to halt the disease process--if it was related to lyme

He now is with a researcher who treats him for viruses--and feels this helps maintain his cognitive abilities.

He still has weakness, and tires very easliy--but he is here, watching his grandkids grow up, 16 yrs after the orginal dx.

quote:

---

Originally posted by yankee in black:
Treepatrol:

I wasn't commenting on KrazyKat's medical condition-----just what the abstract is saying

To my knowledge any type of TBD can cause swelling--as can alot of other infections, even EBV, ect.

Thank god in most patients, it's fairly minimal

The more you research these diseases---the more you realize that they are thrash can DX's( like MS, Lupus,ect.)---and that there are many infectious agents that can underlye these sypmtoms--possiably even combinations of infectious agents.

Only reason I brought up Shy-Drager ayndrome---quite a few folks that I have known were DX.ed with ALS---including my old boss'
father, and later found out it was Shy-Drager--not a great dx., but I guess, better than ALS.

Let me put it this way---Bob is still alive, and in exactly the same condition that he was 16 yrs ago when he was told to go home and get his affairs in order--you have ALS, and have about 2 yrs left to live.

And yes, he's been treated for lyme---totally out-of-pocket by the famous Dr. B, just to be sure that it wasn't the lyme causing it---since I bugged him to death till he when in for testing

Never had a positive test, and never did experince a herx, but does feel much better( mentally) that he did what he felt was nessacary to try to halt the disease process--if it was related to lyme

He now is with a researcher who treats him for viruses--and feels this helps maintain his cognitive abilities.

He still has weakness, and tires very easliy--but he is here, watching his grandkids grow up, 16 yrs after the orginal dx.

And he's happy about that.

---

On the other hand, there are a number of studies that seem to show a correlation between Lyme and ALS, so it's not all rosy. And Lyme can sometimes cause terrible paralysis too. But that Russian TBE is not the same thing as Lyme, so I don't think people should become too panicked by it.

Lisa

quote:

---

Originally posted by Nal:
Thats really scarey!

Nancy

---

Arboviral disease--United States, 1994.

[No authors listed]

Arboviruses are mosquitoborne and tickborne agents that persist in nature in complex cycles involving birds and mammals, including humans. Characteristics of arboviral infection include fever, headache, encephalitis, and sometimes death. In 1994, health departments in 20 states reported 100 presumptive or confirmed human cases of arboviral disease to CDC. Of these, 76 were California (CAL) serogroup encephalitis; 20, St. Louis encephalitis (SLE); two, western equine encephalomyelitis (WEE); one, eastern equine encephalomyelitis (EEE); and one, Powassan encephalitis (POW). This report summarizes information about arboviral disease in the United States during 1994.

Publication Types:
Case Reports

Maybe the cases of ALS not responding to antibiotics are virus-caused in part (per the article Sarah posted above).

------------------------------------

Taking the bite out of Lyme disease

Publish Date: 11/04/03

Frederick News Post, Frederick, Maryland

Staff photo by Doug Koontz

Tom Coffey was misdiagnosed with ALS when he was suffering from Lyme disease.
He is shown at the Evangelical Reformed Church United Church of Christ in
Frederick, where he is a member. On Saturday, Nov. 8, Dr. Gregory Bach of
Philadelphia, who diagnosed Mr. Coffey with Lyme disease, will speak about the
diagnosis, treatment and prevention of the disease. The program is open to the
public.

For almost a year, no one could figure out why Tom Coffey's health was deteriorating. Beginning in January 2001, the once-healthy Mr. Coffey, then 34, started having double vision and abnormally high blood pressure levels. Then came the sluggishness, the shortness of breath and the old man's shuffle.

Soon his metabolism increased to the point where Mr. Coffey, a Frederick resident, said his weight was just "falling off," 5 to 10 pounds a week. Then he developed Bell's Palsy (facial paralysis), difficulty swallowing, loss of balance and severe neck stiffness.

Even after numerous visits to more than five different specialists, Mr. Coffey still didn't know what was causing his illness. "

From the beginning to end, nothing went away; just more and more things kept
happening," said Mr. Coffey, a member of the Evangelical Reformed Church United Church of Christ in Frederick.

"We played ring around the rosy" visiting a lot of different doctors, he said.
In October 2001, Mr. Coffey woke up one morning unable to swallow his own
saliva and was taken to Frederick Memorial Hospital (FMH). Doctors ran multiple
tests and brain scans at FMH and later at Johns Hopkins Hospital. Mr. Coffey
said he was diagnosed with ALS, or Lou Gehrig's disease, and given six months to
live. Within a week, Mr. Coffey was home, living off a feeding tube and waiting to die. 'All that for a tick bite 'Then a glimmer of hope came to the Coffey family through a friend, who told them about a man who died of what doctors thought was ALS but turned out to be Lyme disease. The friend recommended Mr. Coffey see a Lyme disease
specialist. In February, Mr. Coffey traveled to Pennsylvania to see Dr. Gregory Bach, a
Philadelphia-area physician, who diagnosed him with Lyme disease. It's a bacterial infection usually transmitted by the bites of infected deer ticks. "I would have been dead, my kids wouldn't have had a father," said Mr. Coffey, a father of three. "All that for a tick bite."

After six months of antibiotics, Mr. Coffey said he was feeling more like himself; and after nine months, most of the symptoms had disappeared.Today, Mr. Coffey said he feels better than he has in years. Mr. Coffey isn't the first patient Dr. Bach has seen who was misdiagnosed. Dr. Bach said thousands of people with Lyme disease have been told they have arthritis, Lou Gehrig's, multiple sclerosis and various other conditions. Although the Centers for Disease Control and Prevention (CDC) reports an average of 16,000 cases of Lyme disease each year, Dr. Bach believes the actual number is
much higher. In fact, since Mr. Coffey's recovery, 10 other members of the Evangelical
Reformed Church were diagnosed with Lyme disease by Dr. Bach. Seeing how Dr. Bach's treatment saved Mr. Coffey's life and helped other church members, the Evangelical Reformed Church invited Dr. Bach to give a lecture on the disease. On Saturday, Nov. 8, Dr. Bach will speak about diagnosis, treatment and prevention of the disease from 3 to 5 p.m. The event, sponsored by the parish nurse program, is all about education to both physicians and patients. It will be
held at the church, 15 W. Church St. in Frederick, and is open to the public.
Margaret Stahler, parish nurse at the Evangelical Reformed Church, said more
than 100 health care providers in the county have been invited to learn more about the misunderstood illness.

"Most people think of Lyme disease as the immediate period after being bitten
by tick and ... bull's eye rash which really is only seen in about 50 percent of patients who get bitten by ticks," said Ms. Stahler, who was also diagnosed with Lyme disease by Dr. Bach.

Dr. Bach, who started studying the disease after his wife, Debra, was stricken, is the medical advisor to Rep. Joseph Pitts and Sen. Rick Santorum working on the Lyme Disease Initiative Act. To date, Dr. Bach said he has treated over 5,000 patients.
"We are trying to promote education and physician awareness," said Dr. Bach.
"And what is being told in the general public ... that Lyme is not a big problem and two weeks and you're cured ... is not true."Dr. Bach said Lyme disease is the most common infectious disease in the country, but most cases of the disease are missed.One reason the disease is missed is because some people may not be aware they are infected. Not everyone affected by Lyme disease develops the classic bull's-eye rash or flu-like symptoms accompanying infection.
Also, Dr. Bach said Lyme disease is the "great imitator" and mimics other
conditions. The ELISA test (enzyme-linked immunosorbent assay), which is widely
used to determine if a person has Lyme disease, is not reliable, Dr. Bach said.
One of his studies shows the test is inaccurate 50 to 90 percent of the time.
"I want the ELISA test removed from the market," he said about the test used
by the majority of doctors. Instead of the ELISA, Dr. Bach uses the "Western
Blot" test, urinalysis and DNA testing. If a patient is found positive based on
these tests and examination, Dr. Bach recommends three to six months of
antibiotics. The CDC recommends a person with Lyme disease receive antibiotic treatment for three to four weeks after onset.

Facts about Lyme disease
Lyme disease, named in 1977 when arthritis was observed in a cluster of children in and around Lyme, Conn., is caused by a bacterium, the spirochete Borrelia burgdorferi. Typically, it is transmitted to humans by the bite of an infected deer tick or larger dog tick. Some research believes it may be spread by other biting insects such as mosquitoes, fleas and lice. Dr. Bach believes the bacterium that causes Lyme disease is a "brother" to syphilis because of their genetic similarities and said it may be sexually transmitted. Untreated or inadequately treated Lyme disease can cause long-term chronic illness that often affects more than one system of the body. At times,
it can be debilitating and possibly fatal, said Dr. Bach.

Dr. Bach said he has seen patients suffering from seizures, chest pains, migraine-like headaches, vision problems, muscle spasms, arthritis-like joint pain, sinus infection, asthma, swallowing problems, heart dysfunction, chronic fatigue and GI problems. He also stressed the effects Lyme disease has can have on the brain, causing cognitive dysfunction. Some patients have had symptoms associated with Alzheimer's disease, memory loss and emotional changes like depression, anxiety, aggressive behavior and several other conditions.

Frederick Wenner, pastor of the Evangelical Reformed Church, knows firsthand the mental
effects of Lyme disease. Along with chronic fatigue, Pastor Wenner was plagued with depression. "You just lose contact with what's going on around you," said Pastor Wenner, who did not improve even when he was put on antidepressants. "Myself, I didn't have a lot of thoughts during that period. My mind is usually active and things are usually happening." Then Pastor Wenner went to see Dr. Bach last March and was diagnosed with Lyme disease. After several months of
antibiotics, Pastor Wenner said his depression has faded and he is back to
normal. Dr. Bach has been studying Lyme disease and other tick-borne diseases since
1989. Because of his wife's illness, Dr. Bach said he knows firsthand the pain
of the disease. "When she (my wife) was sick, I kept praying ... and said
whatever this is I don't care, just spare her and I'll do this for the rest of
my life," Dr. Bach said. "And, that's what I'm doing."

_____________________________________

This new deer tick sounds ominous, do we know anything about what symptoms it causes?

What is CAL encephalitis, is that tick-borne?

The dangerous equine encephalitis diseases mentioned in the abstract you posted (WEE, EEE) and St Louis are supposed to be mosquito-borne only (officially anyway, let's hope they're not lying).

Now here's something else scary, especially if it turned out that Powassan and/or your new deer tick virus are behaving like TBEV. In this study, the scientists hypothesised that borrelia might hold TBE in check, and as soon as you start to kill Bb with abx, you ratchet up the TBE. Let's hope they were wrong!

Med Parazitol (Mosk). 2001 Jul-Sep;(3):3-11. Related Articles, Links

[Borreliae as possible antagonists of tick-borne encephalitis virus: parasitologic and clinical aspects]

[Article in Russian]

Alekseev AN, Dubinina EV, Vashukova MA, Volkova LI.

An attempt was made to compare the Borrelia-TBE-virus interface in Ixodes ticks and in patients. The authors suppose that Borrelia might suppress viral replication in ticks and in TBE-susceptible individuals. Whether antibiotics (particularly representatives of the tetracycline group) may be essential in treating tick-borne diseases is also discussed. Examples of antibiotic suppression of Borrelia that made the clinic presentation of encephalitis more severe as a consequence are analyzed and discussed. The calculated risk for borreliosis or tick-borne encephalitis and the actual morbidity rates were compared. Possible reasons for disagreement in the results are also discussed.

Publication Types:
 Case Reports
 Review
 Review, Tutorial

PMID: 11680368 [PubMed - indexed for MEDLINE]

quote:

---

Originally posted by CaliforniaLyme:
There are PLENTY of tickborne flaviviruses in the USA!!!!! PLENTY!! And how often are we tested for them as tick-sick people>?
They have just found a new virus in Wisconsin- the Deer Tick Virus (dumb name).
These are all flaviviruses like TBE. Here is an old abstract before new discoveries.
******************************************
1: MMWR Morb Mortal Wkly Rep. 1995 Sep 8;44(35):641-4. Related Articles, Links

Arboviral disease--United States, 1994.

[No authors listed]

Arboviruses are mosquitoborne and tickborne agents that persist in nature in complex cycles involving birds and mammals, including humans. Characteristics of arboviral infection include fever, headache, encephalitis, and sometimes death. In 1994, health departments in 20 states reported 100 presumptive or confirmed human cases of arboviral disease to CDC. Of these, 76 were California (CAL) serogroup encephalitis; 20, St. Louis encephalitis (SLE); two, western equine encephalomyelitis (WEE); one, eastern equine encephalomyelitis (EEE); and one, Powassan encephalitis (POW). This report summarizes information about arboviral disease in the United States during 1994.

Publication Types:
Case Reports

PMID: 7643850 [PubMed - indexed for MEDLINE]

---

Hello Tree Patrol,

Such as my my previous posting in this thread about the gentleman who has had much better luck treating with his supposed ALS with anti-virals over ABX

California Lyme: I remember coming across that Russian study about TBE and ALS

I'm not going to list the ABX--since I'm not sure my recall is the best tonight, having just gotten off of a 12 hr shift.

But I do remember reading the study and remembering the strange feeling of Deja' Vu ---because of all the ABX that I have taken over 9+ yrs---this was the only one that made me noticably worse. Most, if not all ABX helped, and once treatment was stopped--I would relapse

It was posted here on Lymenet about 2 yrs ago, I believe

If you come across it, could you please re-post it?

Thank You kindly!!

[Borreliae as possible antagonists of tick-borne encephalitis virus: parasitologic and clinical aspects]

[Article in Russian]

Alekseev AN, Dubinina EV, Vashukova MA, Volkova LI.

An attempt was made to compare the Borrelia-TBE-virus interface in Ixodes ticks and in patients. The authors suppose that Borrelia might suppress viral replication in ticks and in TBE-susceptible individuals. Whether antibiotics (particularly representatives of the tetracycline group) may be essential in treating tick-borne diseases is also discussed. Examples of antibiotic suppression of Borrelia that made the clinic presentation of encephalitis more severe as a consequence are analyzed and discussed. The calculated risk for borreliosis or tick-borne encephalitis and the actual morbidity rates were compared. Possible reasons for disagreement in the results are also discussed.

Publication Types:
Case Reports
Review
Review, Tutorial

PMID: 11680368 [PubMed - indexed for MEDLINE]
1: Vopr Virusol. 1996 May-Jun;41(3):138-41. Related Articles, Links

[Strategy for choosing antibiotics for treating bacterial infections associated with chronic tick-borne encephalitis]

[Article in Russian]

Malenko GV, Pogodina VV, Frolova MP, Ivannikova TA.

The capacity of wide-spectrum antibiotics kefzol and ristomycin to activate the persisting tick-borne encephalitis (TBE) virus and cause an exacerbation of chronic process was investigated in Syrian hamsters in whom a prolonged (77 to 270 days) persistent TBE infection was induced by three TBE strains: Vasilchenko, V-383, and 205. The degree of antibiotic-induced activation was assessed using the criteria characterizing the reproduction and peculiarities of persisting TBE virus, immunodepression, and morphologic changes in the central nervous system. Effects of kefzol and ristomycin were compared with those of 8 antibiotics studied previously. Ristomycin, levomycetin (chloramphycin), penicillin, ampicillin (ampital), and levoridan were referred to drugs devoid of evident provoking effect. Kefzol (cefamezin), florimycin (viomycin), and kanamycin (kanamytrex) were characterized as weak activators and streptomycin and tetracycline as potent activators of the persisting TBE virus. These data may be used when selecting alternative agents for therapy of secondary bacterial infections concomitant with TBE.

PMID: 8928510 [PubMed - indexed for MEDLINE]
1: Vopr Virusol. 1999 Jan-Feb;44(1):35-9. Related Articles, Links

[Effect of gentamycin on persistence of tick-borne encephalitis]

[Article in Russian]

Pogodina VV, Malenko GV, Karmysheva VIa, Frolova MP.

Effect of gentamicin, an aminoglycoside antibiotic, on the persistence of tick-borne encephalitis (TBE) virus in Syrian hamsters and Macaca iris in remote periods (70-434 days) after inoculation is studied. Attempts at virus isolation from animals treated with gentamicin failed. Unlike other aminoglycosides, e.g. streptomycin, gentamicin exerted no immunodepressive effect; moreover, immunocorrection was observed in some experiments on monkeys and hamsters. None of the 10 previously tested antibiotics elicited such an effect or inhibited the persisting TBE virus. Morphological study of the central nervous system in hamsters and monkeys showed that injection of gentamicin did not cause an exacerbation of chronic encephalitis. The mechanism of immunocorrecting effect of gentamicin is to be further investigated.

PMID: 10190241 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

I'm glad you found those abstracts before I stated that it was the Doxy that completely threw me over the edge with this disease

Was able to work the first two yrs with active lyme( not fun, but I got by, quite literally because I became nothing at home but one big ole' queen--paid to have everything done around the place so I could just concentrate on trying to get well, and stay working)

When the Erlichia testing came back +, and I started treatment for that with Doxy( proper dosages, proper duration of time)---I became sooo ill, in a matter of 4 months' time ,I was fully disabled--couldn't even find my way down the street half the time.

When I was able to half crawl out of my hole, and I started to do some research of my own, I came across that Russian abstract---and to say it hit me like a ton of bricks is to put it mildly

I was bitten in Germany (darn Aryan race of borrelia)so it just made some sense to me

I never tested positive for TBE

It has taken me over 4 yrs to get back any semblence of where I was (in my health) before taking doxy

I HATE DOXY!!! Never been on it since, don't even like handling the stuff!!

And no, I'm not known to have any genetic difficulties with the drug( gentleman at Texas A+M tested me for that--since I contacted him about it, and he thought it might have been the problem)

Part of what helped to bring me back from the living dead was a Dr. versed in travel medicine--who knew in Europe the co-infections could be different

And was willing to hit me with some pretty strong anti-virals that had been known to help with folks like me

They helped me quite alot, to say the least!

I'm sure this isn't many people who post here on Lymenets' problem(TBE, ect.)

But you never know?

So it's always good to hear others' stories

I'd follow California lyme's advice, just hang in there!!! As it seems to be the case with most folks---really tough time for quite a long time, then you start to see some improvement.

I always saw good improvemet prior to doxy, and have had some sort of improvement with everything tried since.

Don't worry about one persons' story with a certain type of ABX, unless you experince something like it ( most likely not) then, it is always handy to do a search, and read about others' experinces when they were dealing with the same issues.

I've dealt with alot in my almost 9 yrs now with lyme---but there is still plenty of situations that I read about on this board---that I have never experinced

It's different for every patient