posted
Hi - has anyone had any experience with lyme disease that looks and acts just like ALS? My brother appears to have ALS, but tested pos for lyme with the western blot test. He is getting antibiotics for 6 months now and just seems to be getting worse and worse. He sees a dr who says there is no ALS, just undiagnosed lyme disease. Does anyone have any ideas/advice? thanks. Posts: 13 | Registered: Jan 2005
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posted
Welcome Jenny to the board, and here are the answers you want on ALS/lyme. When you bring up the link, look for ALS and go to that page for more detailed info!
Now you have months ahead of you reading!
To fibro/CFS members, I just came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...FMS, CFS, IBS, etc.
Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001.
posted
Hi Jenny, I have alot of ALS symptoms. For me it was coinfections. Bartonella/brucella I took all kinds of abx but didn't show improvement until 2 months of my current Rifampin/minocycline.(which made my llmd very pleased)Not to mention how thrilled I am. I hope your brother improves quickly! kt
Posts: 740 | From BC Canada | Registered: Mar 2003
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I couldn't relate more to your question, for a second i thought you were my sister writing this! I was dx with ALS this past summer, "from one of the best" neuros in DC metro area. After being given a death sentence, I found an LLMD and tested positive within 30 days of my ALS dx. (my neuro come to find out didn't even test me for lyme or anything related, even though i told him i was treated for lyme 4 yrs previous - i knew i had it again and he put me on steroids which nearly killed me)
I too have been on abx for 6 mos. now, and most recent my 3rd week on IV rocephin, and i've never felt worse! This must be what they refer to as a really bad herx reaction! I've had mild herx's when my abx are switched or added, but this so far is the worst.
My llmd told me to expect to go through a really bad time, that i will feel like i'm going backwards and getting worse, but he says "it gets worse before it gets better".
I sympathize completely with you, your brother, and your entire family. Keep on, keepin' on!
------------------ ALS-AlsoLymeSymptoms Did You Know? Lou Gehrig vacationed in Lyme, CT.
Posts: 94 | From Maryland, USA | Registered: Jan 2005
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posted
aslyme - that is very interesting indeed. the only thing is my brother has gotten so bad so quickly. He is progessing exactly according to an ALS outline. This summer he could swim and walk and drive and now he can do none of those things. I don't know if it's a herx reaction, because it just seems progessively worse, no matter what meds he is on. He was just outfitted with a shunt, which is a nightmare, as I'm sure you know. Are you feeling better now 6 months on abx? I'm not sure of the ettiquite on this board, or else I would have written to you personally. Our family worries - we don't have any experience with lyme (or ALS) and he just seems to be spiralling downward and the llmd he sees takes only cash. I know about gherig's summers in CT ( he played for the minor league team in hartford), and also about lyme clusters in CT as well. Any info you could share with us would be so helpful.
My brother was told he had als by some very well known neuros in NYC, and if it could be lyme then wouldn't they at leat want to check that out? A stupid question, I guess. We also haven't met anyone who was dx with als then recovered when treated for lymes. we are all hoping it is true, but we are living in a vacuum of information. thanks again.
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I have lots of ALS symptoms too, especially the muscle twitching.
I wasn't getting better after months of abx for LD, including IV.
It turns out I have a co-infection with Mycoplasma Fermentans which was not treated by any of the abx (Zithro then Doxy (generic) then a Biaxin/Rocephin combo) that I was on for LD.
I've been on 5 months of specific abx, mostly fluoroquinolones, for this strain of mycoplasma and I'm starting to see progress. It has been a very, very slow road.
[This message has been edited by Mathias (edited 14 January 2005).]
posted
Mathias, how did you find out about the additional infections? I don't think my brother's dr is testing him for anything else anymore - the dr says eveything is going along according to schedule. He saw Mitsimoto, I forget if he is at Colombia pres or mt. sinai. He was tested for lymes and it came back neg. He only tested positive with this llmd and the western blot test. I agree this is a long road.
Posts: 13 | Registered: Jan 2005
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posted
Hi Jenny - Boy do I relate to what your family is going through!!! A year ago my brother started having health problems - went to Family Dr., then on to 3 Neuro's - was told in March all his symptoms (speech, swallowing, muscle twitching, nerve damage, muscle atrophy and weakness, etc)parallelled ALS diagnosis - asked to be tested for Lyme - told impossible that he could have Lyme. As the year passed, symptoms grew...carpal tunnel, balance problems, vision problems, skin rashes, curled fingers, unsteady gait..etc. He took it upon himself, since he wouldn't accept that diagnosis to find a Lyme Dr. He lives in NY - traveled to Hermitage, PA and Dec. 2, 2004 was diagnosed with Lyme Disease. Oral abx really made him feel wiped out and achy, and present symptoms intensified. Started IV Rocephin Jan 11 and is REALLY crappy today. He was warned this would happen - he would get worse before he got better but it is part of getting better. When he asked his LLMD last week about the possibilty of having ALS AND Lyme, his Dr. told him in 2004 he treated 30 patients with a preliminary dx of ALS and with Lyme treatment, 29 of them got better!!!!! Very encouraging to our family...given the choice, we will fight Lyme!!!! Hope this helps a bit --- all teh best to you and your family. It is horrible to watch a loved one go through this!!! His LLMD also told him - who's to say ALS isn't really undiagnosed/untreated Lyme??? Lyme Sis
Posts: 8 | From Punxsutawney, PA | Registered: Dec 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Do a search on the internet for Dr. Martin Atkinson Barr and ALS and Lyme Disease and Flagyl/Metronidazole. You should be running into his writing: in about 1999 he tested every ALS patient he could find, and all of them had Lyme. I think he said he tested 100. If you search here on the board, you might even find it here. I know it was talked about at the time when it was first discovered that Flagyl (Metronidazole) and Tinydazole works for some people with Lyme.
Sorry I do not have time to look now.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Mitsumoto is at Columbia but did he get tested by a Lyme Literate Neuro (Dr. B) while he was there?
Columbia uses Stonybrook for LD testing, so I wouldn't rely on that test result at all.
I assume that he had a spinal tap? What was that tested for?
My additional infection was found with repeated testing of my spinal fluid. A second spinal tap yielded a positive PCR for mycoplasma.
[This message has been edited by Mathias (edited 17 January 2005).]
It's a report on new animal research indicating that Rocephin can reduce symptoms in ALS independently of its antibacterial effects.
The research used animals that had been specially bred to mimic human ALS. It turns out that Rocephin acts on a gene that helps improve glutamate transport - in ALS, glutamate deposits at the nerve roots are apparently an important part of the pathology.
I don't know what drugs your brother has been treated with, but if it hasn't been tried yet IV Rocephin sounds like it might be helpful even if Lyme isn't responsible for his ALS - and of course, it may well be.
Can you tell us a bit more about the specific antibiotic(s) your brother has been receiving?
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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posted
hi everyone - thank you so much for all your responses. My brother is taking rocephin - I thought his meds would change with the shunt but they haven't. Does anyone think it's possible to have both als and lyme? How long should he take this treatment if he shows no improvement? Thanks again, this information is very hopeful.
Posts: 13 | Registered: Jan 2005
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I too had similar symptoms and I went down hill quickly on Rocephin after I was treated for Bartonella. Make sure your brother was tested for coinfections. I responded well to Doxy/Biaxin combo as have many other patients who are seeing the same doctor in PA. It is a slow process to symptom free, 3-4 years, but I felt a difference after being on the abx's about 6 -7 months. You have to find a drug that will halt the ALS symptoms right away because once you reach a certain point with the type of Lyme you can't come back. Go to a LLMD that has a tract record for treating Lyme sucessfully. Remember there is no cure for late Lyme, but you can get to symptom free. You can email me if you want some names of LLMD's.([email protected]) Lisa
posted
Hi--I was just wondering if any of the posters for this thread had any follow-up. My dad is in the same situation. Diagnosed with ALS first, then positive for Lyme. His neuro doesn't believe all this Lyme stuff. We need to get him somewhere else, and I'm getting the very clear picture that university docs are not going to be supportive of treating Lyme in order to rid Dad of the ALS symptoms. This has been a nerve-wracking experience.
Jenny--I really hope your brother has found something hopeful and is on the way to recovery. What a great sister!
ALSLYME--Sounds like you and my Dad saw the same GWU doc-I will email you privately. Hope you are making progress with your situation.
posted
Jenny. the best thing your family can do is to forget the ALS dx and believe the LLMD. ALS is simply the symptoms of Lyme, is not treated. Lyme, an actual disease is treated with antibotics. Given enough time the lyme will be cured and the system will clear the neurotoxins out of the system. The LLMD may have to try several combinations of antibotics, but stay with them, it is the only sane thing to do.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
I have had als symptoms for quite some time.
Some tips to help:
Vitamin D3--only-- has helped quell symptoms siginificantly. I just got this relief over the past week. Since this is a new response, I have yet to really know what is means w/rt my als symptoms. I'm definitively diagnostic of lyme disease, and with photos of rashes from day 6 of satellite rashes
I got this hint from the yahoo.com group on CFS. For leads on D3, go to this group and go to message #1; check message index for links on vitamin D. This reduced my symptoms very significantly--NOT--completely. If I recall correctly(I'm sleepy now), the D3 tones-down immune syst. aggression. I think CD4(T-helper activity), thusly and hence als, and ms symptoms.
Magnesium and calcium, extremely important. If muscle twitching, I'd do magnesium first,with out the calcium, then reinstitute the calcium. Goal is to get magnesium level close to normal levels,first,before taking the calcium.
If twitching and muscle cramps, the he is severely deficient in magnesium.
Secondly, the antibiotics flagyl, and tinidazole have been helpful. One study by Atkinson-Barr = ALS patients + flagyl = excellent response. Tinidazole has helped me with this as well. My very first major break through I attribute to flagyl(metronidazole), and tinidizole.
For Metronid. study, search this site, or sci.med.diseases.lyme for the study. Otherwise please avoid the latter site until you know who, and what your dealing with over there, and can separate the psychotic chaff from authentically informative material posted there.
Multi plant and animal enzymes; e.g., Wobenzyme; pancreatin; Enzymatic Therapy makes an enz. prep. close to that of wobenzym, but with lysozyme.
One site said avoid sulfur, and selenium as these are quite high in als, and cause or are associated with nervous sys. degeneration. I have yet to explore this connection in an in-depth fashion. For this statement, google: 'als + selenium' or 'Selenium + borrelia'. You'll get to a site that mentions minerals and othe elements whose body levels correlate with certain disease manifestations.
I found the above sulfur connection and maybe the selenium connection true for me; spinal burning, weakness in legs.
Selenium: Sodium selenite, 10drops to suggested dose in water with meal. Effect = skin peeling on left palm. This, I think was a manifest negative effect on the thyroid, so I just discarded the entire bottle. I had other Sx assoc. w/ this, one of which was in the lower left neck over area of the thyroid.
After epsom's salt(magnesium sulfate)orally, I got weakness in arms, and shoulder girdle. Other times I took the epsom's salt, I did not get this effect; subsequent intake of 1/8tsp. in 8oz., water gave a same but substantially diminished effect.
Magnesium thiosulfate seemed to worsen my blurry vision. Only did two bottles of 10-20 drops in water inconsistently over time, so nothing conclusive can be said. These effects may have been both good and bad.
pq
[This message has been edited by pq (edited 07 March 2005).]
This site correlates increased sulfur and selenium levels with als symptoms and signs. I've only just discovered it, and so am looking further into this connection. http://www.acu-cell.com/dis-als.html
Here's more goodys! A typical response to newcomers.
Page 1.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's CDC"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis." From the CDC case definition: From: Cheryl
Yeast Problem Diet too Oral Yeast Oral Yeast ZIPZIP Thanks Flora Beneficial Flora: Bifidobacterium bifidum, B breve, B infantis, B lactis, B longum,Lactobacillus acidophilus, L brevis, L bulgaricus, L casei, L gasseri, L plantarum, L paracasei, L rhamnosus, L salivarius, Lactococcus lactis, Streptococcus thermophilus
CDC Citations for the Underreporting of Lyme disease From Cheryl
Emerging Infectious Diseases, March-April 2000 "In North America, Lyme disease and endemic relapsing fever pose the greatest threat to human health and have received the most attention of the borrelial diseases. Approximately 14,000 cases of Lyme disease are reported in the United States each year; however, the actual number of cases may be 10-fold higher (2)."
MMWR January, 2002 "The findings in this report are subject to at least three limitations. First, because LD is reported through passive surveillance, LD is underreported, and the distribution and demographics of reported cases could be biased. Second, LD is underreported in areas where disease is endemic and might be overreported in areas where disease is nonendemic. Third, not all LD patients present with typical manifestations; other conditions might be confused with LD and laboratory testing might be inaccurate."
MMWR April, 2000 "As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported. Studies in Connecticut and Maryland estimated 7--12 unreported cases for each reported case (20,21). Additionally, the case definition has limitations of sensitivity and specificity."
CDClinkdead removed? "The overall incidence rate of reported cases in the U.S. is about 5 per 100,000 population, but there is considerable underreporting."
posted
Jenny, How is your brother? I am very curious because I have the same situation. I have been on abx for 1 yr and have not yet improved.
Posts: 39 | From NJ | Registered: Nov 2005
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posted
Wow did this post hit home. going through all of the ALS/LYME stuff. muscle twitching, weakness atrophy in the calves,horrible. I'm scared $%^%$# it's ***. I also have rheumatoid arthritis. Had a Igenex wetern blot done positve on IGM bands23-25++, 34ind 39+ 41+ 66+ and 93+. I'm afraid ofcross reactivity with the RA factor causing a false positive. Dr Harris said not likely but they mention it on their web page. Been on Doxy for a month and getting worse...Thoughts please ....Thanks
Posts: 408 | From NY | Registered: Jan 2006
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posted
Jenny, hope your brother gets well. Anybody want to comment on my last entry. I sure would like some ideas......
Posts: 408 | From NY | Registered: Jan 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Sounds like lyme to me. I wouldn't worry about ALS with that Western Blot.
What dosage of Doxy? 1 month is not very long.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
started at 200mg now 300mg daily. taking pro-biotics also
Posts: 408 | From NY | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Doctors at the Mayo Clinic diagnosed Gehrig with a very rare form of degenerative disease: amyotrophic lateral sclerosis (ALS), which is now called Lou Gehrig's disease. There was no chance he would ever play baseball again.
That explains a lot in bold.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Source: Columbia - Lyme website (Ask the Doctor section)
Q: Is it possible for Lyme disease to be misdiagnosed as ALS? Are there similarities in symptoms between these two diseases?
The question of a relationship between Lyme Disease and ALS first received significant academic attention when Dr. John Halpern who was then a neurologist at Stony Brook conducted a study in which he compared the frequency of blood test positivity to the agent of Lyme disease among patients ALS to community controls. The results indicated a higher percentage of the ALS patients were seropositive for Lyme Disease.
Since then, there have been isolated case reports both in the media and one or two in the academic literature indicating that a patient had been misdiagnosed with an ALS-like illness only later to be rediagosed and treated for Lyme disease with good clinical response.
Although we suspect that there may be rare individuals for whom such a relationship does exist, the vast majority of patients with ALS are not thought to have Lyme disease as the cause of their serious disease.
Also of interest is that there is now a clinical trial underway sponsored by the NIH in which an antibiotic, Minocycline, is being used for 9 months to see if it is helpful in stabilizing or reducing the progression of ALS; this is being done not because ALS is thought to be infectious in etiology but because minocycline in known to have beneficial anti-inflammatory effects.
ILADS WELCOMES PHYSICIAN RECOVERING FROM ALS DOCTOR'S CASE SUPPORTS THEORY LYME DISEASE MAY BE THE CAUSE OF ALS
Bethesda MD September 2, 2004 -
The International Lyme and Associated Diseases Society (ILADS) strengthened its impressive membership today with the addition of Dr. Dave Martz of Colorado Springs, who joined ILADS 15 months after being diagnosed with Amyotrophic Lateral Sclerosis (ALS).
In April of 2003, Dr. Martz began suffering weakness and pain in his muscles. Dr. Martz soon lost much of his mobility. His condition worsened forcing him to retire from the medical practice he loves.
After six frustrating months with hope fading, Dr. Martz discovered the work of Dr. Gregory Bach of Colmar, Pennsylvania. Dr. Bach, who is a member of ILADS, suggested a link between ALS and Lyme disease. IGeneX Reference Laboratory of Palo Alto then confirmed Lyme bacteria in Dr. Martz. Dr. Martz then sought out a local ILADS physician who started Lyme disease treatment based on the recommendations of Dr. Bach. The results were dramatic.
"Before I found Lyme "literate" professionals, I could only function at a level of about 20 percent," says Dr. Martz. "But now that I'm in expert hands, I am up to 75 percent of full function and I hope to return to work soon as a physician, helping others with Chronic Lyme Disease." An internist, and Past President of the Colorado Medical Society, he is committed to giving others opportunities that have been given to him.
The Centers for Disease Controls says that Lyme disease may be under-reported by as much as ten-fold. This means as many as a quarter of a million Americans may contract Lyme disease each year, yet most of them are unaware of it. ILADS will hold its annual meeting in October of this year in Rye, New York.
ILADS president, Dr. Steven Phillips, says, "Dr. Martz is an example of the many physicians and medical experts we encourage to join ILADS so we can continue to raise awareness and make vital advances in the world-wide fight against Lyme disease."
For more information about Lyme disease go to www.ilads.org
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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Neurologischen Abteilung des Kaiser-Franz-Josef-Spitals, Wien.
CSF investigation in a 61-year old female patient with clinical picture of motoneuron disease gave evidence for chronic infection with Borrelia burgdorferi. Improvement of clinical and CSF findings could be observed after antibiotic therapy. The diagnosis of amyotrophic lateral sclerosis which was initially suspected had to be revised and the disorder was interpreted as chronic neuroborreliosis.
Publication Types: * Case Reports PMID: 7610670 [PubMed - indexed for MEDLINE]
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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Immunologic reactivity against Borrelia burgdorferi in patients with motor neuron disease. Halperin JJ, Kaplan GP, Brazinsky S, Tsai TF, Cheng T, Ironside A, Wu P, Delfiner J, Golightly M, Brown RH, et al.
Department of Neurology, State University of New York, Stony Brook 11794.
Of 19 unselected patients with the diagnosis of amyotrophic lateral sclerosis (ALS) living in Suffolk County, New York (an area of high Lyme disease prevalence), 9 had serologic evidence of exposure to Borrelia burgdorferi; 4 of 38 matched controls were seropositive. Eight of 9 seropositive patients were male (8 of 12 male patients vs 2 of 24 controls). Rates of seropositivity were lower among patients with ALS from nonendemic areas. All patients had typical ALS; none had typical Lyme disease.
Cerebrospinal fluid was examined in 24 ALS patients--3 (all with severe bulbar involvement) appeared to have intrathecal synthesis of anti-B burgdorferi antibody. Following therapy with antibiotics, 3 patients with predominantly lower motor neuron abnormalities appeared to improve, 3 with severe bulbar dysfunction deteriorated rapidly, and all others appeared unaffected.
There appears to be a statistically significant association between ALS and immunoreactivity to B burgdorferi, at least among men living in hyperendemic areas.
Publication Types: * Case Reports PMID: 2334308 [PubMed - indexed for MEDLINE]
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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Neurol Neurosurg Psychiatry 1997;63:257-258 ( August )
Letters to the editor
Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection
...... "In the light of the evidence, it seems safe to conclude that the patient's symptoms were due to a CNS Borrelia burgdorferi infection which merely mimicked amyotrophic lateral sclerosis. Several reports have been published on spirochetal diseases leading to isolated damage to the motor system.
Spinal meningovascular lues has been reported to cause a clinical syndrome mimicking motor neuron disease.4 Fredrikson and Link published a case report of a patient with isolated upper motor neuron symptoms due to CNS borreliosis who responded favourably to antibiotic treatment.5
Cases of painful motor neuropathy due to Borrelia burgdorferi specific infection have also been reported.1 Halperin et al6 found serological evidence of exposure to Borrelia burgdorferi in nine of 19 patients with motor neuron disease. However, none of them showed signs of Borrelia burgdorferi specific immunoreactivity in the CSF or favourable response to treatment.
It can be speculated that the spirochete Borrelia burgdorferi has the ability to induce an immune reaction that specifically affects motor neurons. This reaction may mimic different, non-curable diseases, such as spastic spinal paralysis, spinal muscle atrophy, and amyotrophic lateral sclerosis.
Therefore, we suggest that patients diagnosed as having progressive motor neuron disease, who live in endemic areas, should be tested for Borrelia burgdorferi specific antibodies in serum and in CSF. The test could reliably detect a rare, but treatable disease mimicking motor neuron disease."
B HEMMER, F X GLOCKER, R KAISER, C H L�CKING Department of Neurology and Clinical Neurophysiology, University of Freiburg , Germany G DEUSCHL
Department of Neurology and Clinical Neurophysiology, University of Kiel, Germany
Correspondence to: Dr Franz X Glocker, Neurologische Universit�tsklinik Breisacher Strasse 64, D-79106 Freiburg, Germany.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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