treepatrol
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posted
up this week
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dontlikeliver
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posted
Well, I'm doing OK as far as the ketek's concerned, have not had a return of the diarrhea (yet anyway)
........but I do find it hard to tell if there is any herxing as I am doing 4 days on, 3 days off. Especially as for two weeks now I have had very very sore and swollen tonsil 'stubs' (tonsils were taken out, but have kind of stubs there), bit of ear ache and generally feel run down and awful. At first I thought it's a herx, but then as it's gone on and on and on without change even on my 3 days OFF ketek a week, I don't know. I think if it was a herx, it would let up on my days off.
How are you doing yourself Treepatrol?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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treepatrol
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As of today 2/15/06 I have slight pain in left ankle and have some strange low low key pains wierd not like a herx or at least not any I have had before? Teeth are jumpy cold or hot water this was a big key to my wifes herx's before I never really had teeth pain? My last blood test levels okay except my uric acid is high gout? probaly a result of me drinking diet caffiene free pepsi and just switching and sticking to atkins diet induction phase all this jumps up.
Now Iam trying to add the right carbs with alkalizing effects and I cut out the diet pop.
Also my Dr has me getting blood tests every month now while on ketek watching liver closely.
My last 3 blood pressures were high 157/90 158/90 this one at last visit was down to normal 120/70. Anyhow I also am experiancing quick rage like temper reactions?
But Iam again under a great deal of stress . Prayers allways appreciated.
ps I forgot I have had the thumpity thump thump in my heart a couple of times to. I got that symptom about a year ago. Since being on ketek its happened a couple of times?
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posted
Ketek helped me tremendously. I felt very good on it, never had any problems with my stomach, gut or liver.
It is prescribed in Germany since 2001 and has been prescribed worldwide about 4 million times, in the meantime.
It is known that it metabolizes via the liver but so do other abx. As to the three reported cases of liver damage: I find it very strange that not only
- all 3 cases occurred in the US, but - all 3 cases happened in North Carolina and not enough - all 3 cases happened in the Medical Center in Charlotte
I really wonder how such a coincidence could happen. The doctors there must have done something wrong with these patients. Just my opinion.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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treepatrol
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quote:Originally posted by Gabrielle: Ketek helped me tremendously. I felt very good on it, never had any problems with my stomach, gut or liver.
It is prescribed in Germany since 2001 and has been prescribed worldwide about 4 million times, in the meantime.
It is known that it metabolizes via the liver but so do other abx. As to the three reported cases of liver damage: I find it very strange that not only
- all 3 cases occurred in the US, but - all 3 cases happened in North Carolina and not enough - all 3 cases happened in the Medical Center in Charlotte Medical Center in Charlotte
I really wonder how such a coincidence could happen. The doctors there must have done something wrong with these patients. Just my opinion.
Gabrielle
Thanks Gabrielle Yeah thats interesting.
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treepatrol
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posted
Telithromycine and myasthenia gravis
Spain -- The Spanish Medicines Agency, in line with other Agencies of the European Union, has announced the urgent modification to the data sheet information concerning administration of telithromycine (Ketek�) in myasthenia gravis patients. Telithromycine is a semi-synthetic substance derived from erythromycin marketed in the European Union since July 2001. Its use is limited to adults for treatment of community acquired pneumonia, severe bronchitis or sinusitis.
For patients over 12 years of age, it is also indicated in group A streptococcal pharyngitis and tonsillitis when beta lactam antibiotics are not considered appropriate.
Eight cases (one fatal) of exacerbation of myasthenia gravis have been reported in association with use of telithromycine. Symptoms reported were exacerbation of muscular weakness, dyspnoea, and acute pulmonary failure within a few hours of administration.
The mechanism of action causing worsening of myasthenia gravis is unknown, but cases have been reported in association with aminoglycoside, macrolide antibiotics, and certain fluoroquinolones.
The following points are brought to the attention of prescribers: 1. Given the severity of risk, telithromycine is not indicated in myasthenia gravis patients unless alternative treatment is not available.
2. Myasthenia gravis patients using telithromycine should be closely monitored and should report immediately to their physician any worsening of symptoms. Treatment should be discontinued in such cases. Reference: No. 2003/05, 23 April 2003. http:/ www.msc.es/agemed
-------------------- 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.
treepatrol
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Member # 4117
posted
Wife off ketek as of 2/19/06
Reason she has a hive like rash all over pretty much arms hands,under breasts,belly butt,and inner thighs, and feet now tuesday started on feet.
Itchy burny rash started little white bumps turning red. Also has yeast infection which is calming down,but rash does respond to beydryl cream also we have been eating lots of cashews and some peanuts.
Benydryl cram only last a couple of hours.
We arnt sure llmd and me if its the peanuts cashews or ketek, or yeast so off ketek and I increased acidophilis and getting diflucan for yeast tonight.
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treepatrol
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Member # 4117
posted
Up for more responces updates anybody still on it?? How you doing?
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posted
I take it two weeks on, then two weeks off.
I just started today on my two weeks taking it. So, we'll see how it goes.
I have been doing very good on my break time. I just came back from 3 days in tahoe skiing with the kids. And, no, Im not skiing like I used to. Im very skilled in skiing, so it doesnt take alot for me to follow an 8yr old down the bunny slope. And the middle day I didnt do anything. And, yes, I have some soreness and tiredness, Im not getting much done now that Im home. BUT, nothing like how bad I expected it would be. Im thrilled realy.
Im expecting to herx and feel like **** this time next week cause the ketex and artemisinin are now added in my mix. Ill let you know how it goes.
But, if I keep getting slowly better, I can handle the herxing I get pulsing.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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posted
I had (have?) nuerological lyme - lots of memory problems, confusion, anxiety and fatigue, but minimal or no joint pain. I did about 2 years of treatment progressing thru doxy to augmentin to omnicef, bicillan, biaxicin,zithromax and flagyl in various combos. I felt consistenly bad, worse than before I'd started antibiotics. But since i've had literally hundreds of tick bites, and positive test results, I kept going.
At the end of all this I took Ketek for about 6 weeks along with amoxicillan, IM rocephin (4 times a week), and Flagyl (3 days a week). This is the most abx I have ever taken at the same time during my 2 year treatmnet. I felt pretty bad, but the addition of Ketek to this brew seemed to cause the worst symptoms. The visual stuff was bad. I had a hard time focusing, blurry, and dizzy. Each eye was focusing differently at different times.
I ran out of Rocephin after 6 weeks on this regime, and my #@!&! insurance company would not pay for more. But since I'd developed a super bad case of candida everywhere, I decided to stop all the antibiotics, and went on diflucan alone, plus lots of probiotics, for about 33 days.
On the diflucan I got even worse. Maybe the worst herx I had in 2 years. I couldn't walk in a straight line, no energy, super high anxiety but no energy, I could not be around people, or bright light. I couldn't think straight or keep track of anything. After that i stopped all antibiotics
That was 7 months ago. I gradually began to feel better and I now I feel really good. Better than I've felt in years. I wish I knew what finally made me better me, but as I'd taken a lot of amoxicillan with no change, I'm guessing it was either the Rocephin or the Ketek.(The vision problems I blamed on the Ketek have resolved gradually.)
Or mperhaps it was the Diflucan? I have heard of a European doctor who claims to have cured himself and his patients from lyme with diflucan. And also, I think the diflucan was responsible for giving me the scariest herx I ever had. But who knows maybe it was a yeast die off.?
Has anybody else tried the Diflucan treatment for lyme?
Posts: 2 | From Northern California | Registered: Feb 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Wife made a trip to emergency room couldnt get her breath they ran tests and everything looked good ?
They gave her a pill called Ativan that completly took care of it. I think she had a anxiety attack? The rash was going away the night before but her lips swelled a little trouble breathing then the next day worked herself into a frizzy couldnt catch her breath.
Anyway shes better now rash is almost all gone no itching either. So is the yeast infection no burning during urinating. It either was yeast or the cashews she was shovaling down for a week. I dont think itwas the ketek. will see 2/27/06
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posted
I had to stop ketek. Been on it for about a month. It is just too toxic for my liver. Liver lab values are OK but I feel so toxic on it. Like when I've been on diflucan. I hate to stop because it has been working so well. The only antibiotic that has cut through the fatigue. I am going to work on my liver health first and then maybe try it again at a later date.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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treepatrol
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quote:Originally posted by surg: I had to stop ketek. Been on it for about a month. It is just too toxic for my liver. Liver lab values are OK but I feel so toxic on it. Like when I've been on diflucan. I hate to stop because it has been working so well. The only antibiotic that has cut through the fatigue. I am going to work on my liver health first and then maybe try it again at a later date.
Maybe you could get some milk thistle its one of the things ilads says can help?
-------------------- 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
This board is full of lots of useful interesting information, and I am just now starting to post here.
I started Ketek 400 mgs 2 x day and Flagyl 500 mgs 2 x day on Nov 23rd.
It is interseting to read so many people having stomach problems because one of the 1st things I noticed is a huge reduction in acid reflux. I now only take pantaloc once in a while. I can now eat raw fruit and tomato dishes - haven't done that in a while.
After 3 months of these ABX my LLMD took me off Flagyl.
I did feel bloating which has gone now that I am off Flagyl.
Herxing big time in the first week and frequently since. Right now the pain is the worse part of my herxing symptoms. Really painful skin and muscles in my extremities. The last few days have been especially bad for pain and fatigue. I feel like my blood sugar is 0.
I have taken flucozonol and nystatin in pulses. Liver enzymes okay so far.
My pain med of choice has been tylenol 3, but now that the pain is so bad, I am not comfortable taking that much Tylenol 3s and today asked my GP for Neurontin. Hopefully this bad pain is herx-related and will settled down soon.
Because I have not tested positive for Lyme (Elisa test in Canada) and tested low for Ehlichiosis and Rocky Mtn, my GP is not convinced I have Lyme, and thinks my increased pain/fatigue is FMS and CFS related.
The LLMD doctor who gave me a clinical DX of Lyme in Nov is in BC and I live in Manitoba, so I don't see him as often as I should. His support is essential to my state of mind.
So, at this point I think Ketek is not hurting me, and although I have not had a lot of improvement in symptoms since starting the ABX in Nov, I am determined to keep at it for another month or so and re-evaluate at that time.
Thanks for being here,
happygranny
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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treepatrol
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posted
quote:Originally posted by happygranny: This board is full of lots of useful interesting information, and I am just now starting to post here.
I started Ketek 400 mgs 2 x day and Flagyl 500 mgs 2 x day on Nov 23rd.
It is interseting to read so many people having stomach problems because one of the 1st things I noticed is a huge reduction in acid reflux. I now only take pantaloc once in a while. I can now eat raw fruit and tomato dishes - haven't done that in a while.
After 3 months of these ABX my LLMD took me off Flagyl.
I did feel bloating which has gone now that I am off Flagyl.
Herxing big time in the first week and frequently since. Right now the pain is the worse part of my herxing symptoms. Really painful skin and muscles in my extremities. The last few days have been especially bad for pain and fatigue. I feel like my blood sugar is 0.
I have taken flucozonol and nystatin in pulses. Liver enzymes okay so far.
My pain med of choice has been tylenol 3, but now that the pain is so bad, I am not comfortable taking that much Tylenol 3s and today asked my GP for Neurontin. Hopefully this bad pain is herx-related and will settled down soon.
Because I have not tested positive for Lyme (Elisa test in Canada) and tested low for Ehlichiosis and Rocky Mtn, my GP is not convinced I have Lyme, and thinks my increased pain/fatigue is FMS and CFS related.
The LLMD doctor who gave me a clinical DX of Lyme in Nov is in BC and I live in Manitoba, so I don't see him as often as I should. His support is essential to my state of mind.
So, at this point I think Ketek is not hurting me, and although I have not had a lot of improvement in symptoms since starting the ABX in Nov, I am determined to keep at it for another month or so and re-evaluate at that time.
Thanks for being here,
happygranny
The reduction in acid reflux may be because the flagyl and ketek killed the bacteria that cause ulcers {Helicobacter}.
I know I no longer get heartburn after being on abx's for starting 5th year.
Only had heartburn on doxy you have to drink plenty of water when on abx's.
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam off ketek and feel pretty good sofar
-------------------- 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
I have been on Ketek for about a month. This is my third abx - and this one gave me one heck of a herx! I had 4 days where I was miserable. I have not had any belly problems with Ketek, but my hips and knees are still aching. NP says that I am still possibly herxing and that the Ketek really gets into the joints and goes after the buggers. Overall I am pleased with Ketek, I would like for the pain to stop, but I assume that the pain is equalling healing.
Posts: 66 | From Texas | Registered: May 2005
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AZURE WISH
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Member # 804
posted
Ok, I finished another two week on round of KEtex last friday. Last wed they did a blood draw, and I just got a message from my daughter that the doctor called yesterday and my liver numbers are high.
Actually, they have been up-for me-since aug., but still in the proper range. I will have to call tomorrow to see what they are and what this means. All my daughter said was that the message was to go in weekly for blood draws, so I guess I go to the lab tomorrow.
I had already checked with my doctor and got agreement to take an ABX break while I did anticandida measures and started trying metal detox.
I guess I'll also do no diflucan. Not sure about what else might be bad for this.
Also, usually the insomnia and dreams go away when I stop the Ketex, but not this time.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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posted
Up to see how every one else is doing. Liver numbers are AST 71 and ALT is 78, I called today.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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I took Ketek 800mg once a day with Ceftin 500mg twice a day for ONE month only. My intestinal lining was shredded immediately. With the addition of Plaquenil 200mg twice a day, my entire digestive system shut down...absolutely no appetite and could hardly force water into my mouth...for days. I also developed black tongue.
Upon removal of Ketek, eating returned to normal. Black tongue also disappeared after about 2 weeks. No longer observe intestinal lining coming out.
Ketek is too strong of an abx for me.
Posts: 43 | From New York City | Registered: Feb 2006
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treepatrol
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-------------------- 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.
dontlikeliver
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Member # 4749
posted
Treepatrol,
Are you still taking Ketek?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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treepatrol
Honored Contributor (10K+ posts)
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posted
I stopped better than a month ago Iam off everything except probiotics.
Wife had a terrible reaction but we dont know if it was peanuts cashews or the ketek? She got red bumps all over her and some areas itched then they started to go away replaced by swelling lips hard breathing then a trip to e room and they gave her ativan or something like that relaxed her and shes fine??
She gets awfully excited when something isnt just right. Shes off ketek immediatly just in case and I finished out the month and went off everything feel pretty good still waiting for that deep dull ache to return hope Iam over this. Have appt in june llmd I might go on something just to see if I herx.
Hopefully ketek wacked hopefully
-------------------- 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
I called my LLMD this morning to tell her I have stopped Ketek for both my 15-year-old daughter and myself, and to ask her to prescribe something else.
I realize this may be an overreaction, but it would be hard to forgive myself if something happened to one of us after knowing that the safety studies used by the FDA to approve Ketek were fraudulent. I realize the fraud that was committed may not have any bearing on whether Ketek is safe; however, based on what was in the WSJ article, it sounds as though there weren't any credible safety studies done on Ketek for all intents and purposes. And that is scary.
We're both been on Ketek for over 4 months. Hopefully, we have received some benefit (nothing dramatic, but we've both been gradually improving) and our doctor will agree it also makes sense clinically to try a different drug.
We're both on other drugs as well. My daughter's on Omnicef, Plaquenil, Malarone, Artemisinim (an herb, I know), and pulsing Flagyl twice a month. I'm also on Minocycline, Mepron, and Art.
Anyone else feeling uneasy about Ketek? Any thoughts on what the next best drug might be given what we're currently taking?
Posts: 164 | From USA | Registered: Jul 2005
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lymednva
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Member # 9098
posted
I've been on Ketek for four weeks today. During the first week I was fine for a couple of days and then overcome by extreme fatigue. I spent several days sleeping most of the time. My cognitive problems were at an all time low.
Since then I have been doing OK. For the past ten days or so I have had more energy than I've had in years, although that is a relative term!
My doc is monitoring my liver and I trust him. I've been seeing him for four years and he just recently got on the Lyme bandwagon, but when he gets on something he is knowledgeable and ready to go with it!
He's also not afraid to consult with someone who has more knowledge when necessary. Gotta love him!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Dave6002
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posted
I have been on Ketek for 3 weeks total (14 days Ketek and 14 days Tini, then another round of Ketek/Tini and I am into 7 days on Ketek).
Today, just got my blood tests back and everything is normal.
The tests including blood cell counts and liver kidney function tests.
While I on Ketek, most of the time I didn't feel good.
But seems overall it's improving.
I also tried 400mg a day to reduce Ketek's side effects.
But so far, it's hard to say if it's as effective as 800mg.
I may keep trying and see if my symptoms is improving.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
I have been on Ketek (400/ day for 2 weeks then 800/ day) since December.
I had immediate relief of arthritis symptoms and those symptoms have not returned it is the first time in 5 years that I have had full use of my hands upon waking and haven't had trouble walking
When I first started the Ketek my neuropathy symptoms increased dramatically. The burning pain and the tingling, numbness, and pins and neddle senesations really were going crazy. I was worried but my LLMD said this was due to die off.
He also said we wouldn't get much further in treatment until we started on Babs treatment.
When I started Mepron I noticed a decrease in the intensity and duration of the neuropathy increase cycles (if that makes sense).
My bloodwork has been good. It is being monitored by my local MD who would be more than happy to tell me I am killing myself with this treatment he doesn't believe I have Lyme) so I know that the numbers must really be good.
I don't drink. I detox. I don't eat any sugar, I eat healthy and have for years prior to treatment.
So far so good
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I was on ketex for 7 months before my liver numbers went up. I also took omnicef, always, and diflucan, sometimes.
And, I was also monitered, which is why we could see the numbers slowly creeping up until they got too high. I stopped all prescriptions, and the numbers are fine again, so probably no long term harm done.
This is the first abx to make my liver numbers go up. I have been in treatment for 2 1/2 years and have taken lots of different types and combos of ABX and flagyl etc.... I dont drink, dont eat sugar or fruit etc... I am on a pretty strict vegan anticandida diet.
I also think that I did well symptom wise on ketex, but even my two week on two week off scheduale of it turned out to be too much for my system for a long haul--I started on it last august.
I am not saying not to take it. But, we should report back how we do on it, and it did effect my liver.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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dontlikeliver
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posted
Mountainmomma,
Why didn't the doctor stop the meds right at the point when the number went up in stead of watching them go up and up?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Because they were under the limit (they were in the normal range) of what is considered high. My usual liver numbers are normally at the very low end of the normal range. So, she knew they were getting higher for me, but they were not in a high enough area to take me off meds. We just kept monitering. When they got too high, just barely above the normal limit, we stopped all meds. They then got higher, cause it takes awhile for meds to cause an effect or clear our systems I guess. And now they are back to very low--my usual again.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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thats interesting.
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and those symptoms have not returned 
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