seekhelp
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posted
I'm into my 5th dosing of Coartem / Riamet out of 6 total. I take 4 pills per dose on a schedule. It's a 3-day protocol.
I was thinking this ain't bad at all earlier today and wondering why I was so worked up about taking my medication.
Spoke too fast I guess. I'm sitting watching TV and all of a sudden my heart feels like it's pounding. The one thing I've been most of the course is extra nervous/jittery/jaw clenching. Anxiety is such a horrid feeling. It comes and goes during the day, but it's been there every day for some significant time.
I check my blood pressure and I'm getting readings like 165/105. i can't get my diastolic under 100. I have had some real bad yawning today, but I'm not sure if that means a whole lot. It was like I'd yawn so hard I couldn't catch my breath while mid-yawn. A scary feeling actually.
This stuff is out of your system 3 days post last dose, right?
It's not going to be a TBI that kills me. My high blood pressure will. Everytime I take anti-malarials, it gets worse. Pretty frightening. I guess I need to get to a cardiologist and talk about other meds or something. You don't have a good life expectancy with a 100 diastolic.
I honestly am so lost as to what's a herx, anxiety attack, other problem. I always feel like I'm chasing ghosts. Sometimes I just look in the mirror and say what am I going to do. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rianna
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Hang in there, this is one TOUGH drug - I had to take it with Daraprim and well it was Double trouble. My LLMD aid it was an easy drug yet I hear SO many say how tough it is.
Unsure if its a herx or the drug putting your body under stress, if your worried call your LLMD but be reassured I and many others have had the same response, it does go but as you say can linger for 2-3 days after stopping it
Hang in there
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seekhelp
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What blows my mind is the drug pamphlet says NO KNOWN SIDE EFFECTS. Funny, huh? I was hoping more people would chime in with experience with this drug.
The other possibility is my Lyme could be going wild since I have not been on any Abx for 25-30 days now. I start very soon.
I was breaking into some sweats last night too. Not terrible.
I've got absolutely no clue if I have Babesia even though my WA-1 titer hit as high as 1:2,048 from LabCorp.
I have extreme fatigue upon exertion, head pressure, and feel foggy a lot. I rarely have chills anymore and never drenching sweats. I hope I'm not barking up the wrong tree along with my LLMD treating just a positive IgG test result. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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janet thomas
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ADVERSE DRUG REACTIONS Artemether and lumefantrine combination is well tolerated by children and adults, with most adverse events being of mild to moderate severity and duration. Many of the reported events are likely to be related to the underlying malaria and/or to an unsatisfactory response to treatment rather than to the combination.
Common adverse events reported with artemether and lumefantrine combination included headache, dizziness, sleep disorder, abdominal pain, anorexia, diarrhoea, vomiting, nausea, palpitation, cough, arthralgia, myalgia, pruritus, rash, asthenia and fatigue. Somnolence, involuntary muscle contractions, paraesthesia, hypoaesthesia, abnormal gait, ataxia were other adverse effects reported with artemether and lumefantrine combination. Rare adverse event included hypersensitivity.
Unspecified personality disorders have also been reported in children <5 years treated with artemether and lumefantrine combination
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
seek, I was also hoping more people would chime in with their experience on this drug.
I am to start a 7 day course in a couple of weeks. I wonder if the dosage is lower per day for those who take it for 7 days as opposed to 3. ???
It sounds as if you're not so sure you're getting any benefit.
Although, the sweats last night sound like a babs herx to me. The nervousness/anxiety maybe, too.
I don't know what to make of the bp. I'm trying to relate this all to me, and my bp tends to be low. One time my HR and bp skyrocketed, and that was when I 1st started mepron. It lasted 20 minutes or so, then I don't think it ever happened again.
A babs herx? I don't know what to make of this stuff sometimes.
As far as the pamphlet that says "no known side effects". ALL drugs have side effects! For whatever reason someone made the decision it wasn't worth printing it out. Maybe not enough ppl suffered those effects.
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Rianna
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For me the coartem/Daraprim brought my Babs out, not whilst on the treatment but 2-3 weeks later OMG never had anything like it drenching sweats I mean like I had had a shower, chills late afternoon teeth chattering.......Now for some reason I am having problems tolleratione malarone, I think perhaps I stirred the hornets nest up so much that even a low dose is kicking the bug and my butt.
Its a complete mystery to me and a rollercoaster, if someone jumped in my body right now they would think they were in a horror movie
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sparkle7
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The adverse side effects sound similar to the illness. I considered taking this drug at one point. It's so hard to know if it's a side effect, herx or symptom + the tests aren't accurate - so, it really is like chasing ghosts.
From what I've read, babesia can take up to 18 months to reoccur... It's hard to say how effective this is unless you wait a year or more.
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seekhelp
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Yeah Sparkle7, you hit the nail on the head. These damn drugs produce the disease symptoms. What's the point?
I finished the course now. I pray i don't end up like Rianna did 2-3 weeks later. I'm so sorry to hear it caused that.
I would do ANY test, any biopsy, anything to definitely know what I have or do not have. it is SO SO lame that a tissue test doesn't exist to identify these TBIs. We have to treat possibly for no reason chasing ghosts because the powers that be won't help. BS. BS. BS.
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sparkle7
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This drug is mainly fo malaria. Babesia really is a different thing. Hard to say if it ill be effective. I don't know if there are any studies or tests with babesia & this drug.
Sometimes, I start to think that they just use Lyme as an excuse to fill people up with drugs to increase the profits of the drug companies.
I'm a bit suspicious...
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Rianna
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On a good note, I know a lady who has struggles with Babesia for years, I mean to a terrible disabaling level.....She does Coartem every month and in between does other Babesia meds, she nw leads a good life which I dont think she ever imagined getting.
Posts: 1172 | From UK | Registered: Jan 2007
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Hubby just finished his 4th 3 day cycle of this med. Was on Tindamax 4 days a week and Coartem 3 days per week.
Unfortunately the med didn't seem to do much of anything for him. Some mild sweats and that is about it.
He said it felt like the Coartem was trying to help but the tindamax just caused headaches and stomach pain.
For now he is off babesia meds until his next LLMD appointment. Will continue to pulse tindamax for whatever good it is doing.
Seek -- can definitely relate. I feel like we are totally lost with hubby's treatment. His neuro blames lyme for most symptoms and Steve and I think the coinfections are the key. His regular LLMD leans more towards coinfections as well. So we continue to muddle thru.
Bea Seibert
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seekhelp
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That is all it seems to do for me Bea. Mild sweats. I am having some stomach issues on my left side. It keeps fluttering, rumbling, and bad gas pressure. It just doesn't feel good.
I just don't understand this anymore. If there is references that Coartem treats Babesis, WHY are these LLMDs Rxing it seriously? I see one of the best in the world. Where are they getting their ideas?
My LLMD uses all kinds of meds for Babesia like larium, BUT Dr. B's guidelines have zero reference to them. If Dr. B was a Lyme god, why don't they stick to his wisdom? Has anyone actually gotten better off of alternative therapies besides Mepron, Malarone, CLindamycin, Quinine, or Art? Are these docs just tossing darts in this air?
Rianna, that's good to hear your friend had success. What were her non-Coartem meds during the month? What symptoms did she have to begin with that left now due to good treatment?
Sparkle, I admit I'm questioning the whole Lyme thing too at times. Something smells fishy.
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Rianna
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SEEK - She was so ill with Babesia for years, nothing worked disabled by it, sweats, chills, fatigue as i say disabled,
She had tried everything and then her LLMD had to do a chuck all at it protocol
I believe she has done the following for the last 5 months and is well now, again after years of being so poorly
Her regime I believe is 3 days Riamet the 3 days off then Malarone, Biaxin, Quinine sulphate, artemesia for 21 days then 3 days off and then Riamet and she cycles round again
Posts: 1172 | From UK | Registered: Jan 2007
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sparkle7
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With alot of these drugs - it seems like hit or miss to me. I always like to read the studies & cross-reference everything. It's a good place to look for information as to how effective these drugs will be & how to decide if you want to try them.
I think there are many trends in treatment for our illness. Many of the doctors just go along with the trends but who knows if these ideas actually work. Just seems like it's all educated guesses.
I can make educated guesses, too... I found that since I research everything that pertains to me & my health - that I was always ahead of my doctor. I got sick of paying him for stuff that I already knew...
He was always pushing some supplement that I didn't need, as well. Supplements that he got commissions from - that is. I bet alot of these doctors also get "perks" from drug companies, too.
At first, I didn't know better but after I started studying everything - I started waking up. I'm not saying all doctors are no good but in most cases they really aren't progressive.
We have a difficult illness. It's not easy for them, either. If they don't know - I really don't want to keep paying them, though.
You really have to read & re-read the studies of the drugs & babesia (or whichever this is bothering you)! You also have to "read between the lines" a bit. I learned alot from doing this. IMHO - this is the only way you can make a decision as to whether you doctor knows what they are doing & if you want to take the drugs.
It's time consuming but it's worth it.
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seekhelp
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Sparkle7, what you're forgetting is your paying at times for a script pad. All the research in the world can't buy you that magical peace of paper with a DEA # on it. Sparkle7, where do you do your research (drugs.com?)
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sammy
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Here is more on Coartem including side effects and full prescribing information from the NIH drug database : http://tinyurl.com/2dp89t8
If our doctors follow IDSA standards then they would only treat Babesia if we were severely symptomatic, immune compromised, or without a spleen. They would use combinations of Clinda and Quinine or Mepron and Zith. Treatment would last 7-10days. Patients may be re-treated if they continue to have positive blood smears or positive PCRs. http://emedicine.medscape.com/article/780914-treatment
I'm glad that my doctor has not given up on me after many months of treatment and has continued to try different med combos in an effort to help me get better. I don't want to wait around for some new studies or guidelines to be published before I try something different. I might be permanently disabled, old, or dead before then!
I'm willing to try reasonable treatment alternatives. And I feel better now that I've started an alternative protocol (Clinda, Malarone, Septra DS).
Remember, no one is forcing you to take these medicines. You must chose a doctor that you can trust.
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sparkle7
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seek - I read the studies on PubMed or in scientific journals. Some you have to pay for - so, I usually read the ones that are free.
It's important to know your chances with drugs. In many cases, the diagnosis's are "iffy". So, one doesn't even really know if one really has babesia. Then, one may compound that with taking a drug for something that one may not have plus getting side effects that are similar to the disease's symptoms.
It doesn't really make alot of sense to me to just throw money away & take drugs that may not work for something you may not have. Read the studies... For canine babesia, mepron was only effective in 3 dogs out of 8. The other 5 relapsed.
I don't think it's worth the potential side effects plus the expense. Everyone has to make up their own mind, though.
seekhelp
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Sparkle, if I could get rid of breathing issues and fatigue, it's worth virtually ANY expense. I lost tons of income due to my illness and quality of life.
I do trust my LLMD, but in general I do not believe 99.99% of any LLMDs will ever come up with a 'you don't have a TBI' diagnosis. That's all they see when they look at patients, but they are good at exploring co-morbidities and treating.
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posted
I am on the coartam and dariprim combo- it's a three day course.
Can someone please tell me they have seen good results with either or both of these meds.
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
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seekhelp
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Yes, just read Rianna's story about her friend two line up. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sparkle7
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I think some people here may have had good experiences with Coartem after a few rounds - but many people don't post again, so we don't know if they relapsed.
From what I have read, people can relapse 18 months after treatment. Babesia is very different than malaria. Also, many of the study results are for "uncomplicated" malaria. If we have co-infections with Lyme - the situation is not "uncomplicated".
I've heard of one person who got rid of their asthma after treating for parasites. You may want to try that. It seems that the parasites may be the most under treated aspect of the Lyme situation.
I'm working on that aspect myself these days. I can't say if it's the endgame or not, though. Just one aspect...
Yes, I know about loss of income & quality of life. It's really awful.
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seekhelp
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I'm off it for 3 days now. My head pressure is a lot better than it was before. The problem is my neck is 5x stiffer now. It's really uncomfortable. Not good.
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sparkle7
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Artemesia (one of the ingredients in Coartem) is a very powerful herb. I think you have to start off slow & ramp it up. I think a large initial dose can make you much worse.
This is one reason we can't treat babesia like malaria. With malaria (from what I read) - you have to hit it hard, right off the bat. With Lyme & company - I don't think it's a good strategy. The herxes are too powerful.
People underestimate the power of herbs & the devistation of herxing. It's easy for a doctor to prescribe something - they don't have to experience the repurcussions first hand.
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seekhelp
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I took my last dose of Coartem last Friday at 1 PM. Is it safe to assume it's completely out of my system? I've read the art portion has a very short half-life like 2 hrs, but the other part maybe 3-6 days! Maybe I answered my question, but I wonder as my LLMD says to start the next protocol 3-days after ending Coartem so that makes me think 3 days is enough.
I feel terrible today. Horrid stiff neck, all kinds of neuro sensations, throat tight, stomach issues, etc. This ain't working out how I hoped. I got worse when completing the dose, not better.
I don't know if I somehow injured my neck or really ****ed some TBI off. It feels like I'm literally being strangled. Brutal feeling.
I took some Ortho Molecular Inflammacore powder today praying for some improvement.
Maybe I underestimated this Coartem? My jaw clenching has been really, really bad too. I'm going to need to take a valium tonight and I really do everything in my power to avoid them.
Another possibility is I killed some Babesia and now my Lyme came back out to play more. These stiff neck feelings are awfully like what I had when I first fell ill (and weak arms/tingling).
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seekhelp
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Maybe it is 2-3 days if I'm considered 'healthy' according to this article. I don't know.
sparkle7
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I don't know... It's hard to say. Have you tried just stopping everything & then adding back things one at a time to see how the item effects you?
You may be allergic or just have bad reactions/side effects to things. You can't know if you are taking a bunch of different things.
It sounds awful - I know you are suffering. I'm not sure what is causing it. I don't think you should force yourself to take things that make you really ill. Having a herx is one thing but having bad reactions to things is not all that beneficial.
Some people can be very sensitive.
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seekhelp
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Sparkle, right now I have been off everything since last Saturday since I was instructed too. Before Coartem, I took nothing for 20-25+ days at my own discretion (maybe not so smart).
The only think I took today was that Inflammacore, but I was feeling terrible before so that's not it. i took it to try to alleviate some issues.
The stiff neck could be a physical injury, but not super likely. My 5 yr old daughter fell over the weekend at a store and I was concerned and picked her up w/o using the right posture. I hope I didn't mess up my shoulders/neck since they are so tight already.
My next step is Biaxin and Plaquenil then other stuff. Historically Biaxin has been good to me so I'm hoping it helps again. It's the one Abx that relieves some neuro issues, but it definitely doesn't eradicate anything.
It does seem like I'm a more sensitive person with respect to treatment. It's frustrating. Nothing goes too easy. I wish I knew if I had detox issues truly, but none of my LLMDs/docs are really into this side of the equation.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Well I've completed my three day course of coartem along w/ daraprim three days ago. I don't notice anything! Actually, yesterday and today I've been in a HUGE amount of lower abdominal pain/ cramping with some nausea. I re-read the info pamflet; nothing about abdominal pain. I have an appt this Friday though w/ PCP about really big abcess from bicillin injections (I have to have some procedure to get the abcess drained or whatever the surgeon does to correct the problem).
Anyway, no improvement thus far w/ coartem. **sorry 4 rambling..
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
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seekhelp
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Yeah it seems Coartem causes more stomach issues than let on. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sparkle7
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I don't know... It's really difficult. The abx never seemed to help me. We all seem to have very different symptoms even though we all have gotten a "Lyme" diagnosis.
I'm trying the salt/c protocol these days. I seem to be having good results (if feeling like crap is a good thing + the interesting critters) but I can't say it's a "cure" just yet.
Malaria & babesia are considered parasites if I recall correctly...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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After reading all this, can someone give me a reason why I should even try coartem?
My llmd said "let's try that now", but it's my decision.
I feel like a lab rat sometimes.
I'm sorry to hear the results have not been what I was hoping -for anyone.
I really hope & pray there is an answer for us all.
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seekhelp
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Based on feedback here, I wish I didn't try it honestly. No major improvements. Also, my LLMD said it eradicates 40% of Babesia symptoms immediately. Not for me. It seems at times there is a huge disconnect between what LLMDs state and patients report on Lymenet.
Either everyone here is odd freakish patients or the data is inaccurate!
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seekhelp
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This statement is very true and most concerning about the whole LLMD diagnosis process.
quote:Originally posted by sparkle7: I don't know... It's really difficult. The abx never seemed to help me. We all seem to have very different symptoms even though we all have gotten a "Lyme" diagnosis.
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Rianna
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quote:Originally posted by seekhelp: Based on feedback here, I wish I didn't try it honestly. No major improvements. Either everyone here is odd freakish patients or the data is inaccurate!
I know I took mine with Daraprim so too much together and I was told I would see no adverse effect, well I had to have an emergency call with my LLMD as the reaction was SO SO bad, Psyche wise it was beyonf comprehension and we had to use every binder possible to get the drug out, so for me it was the scarest meds combo ever and I have done multiple IV, orals everything but nothing was as bad as this combo
Posts: 1172 | From UK | Registered: Jan 2007
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I took coartem - 2 pills twice a day for 7 days. I made it through 6 days.
I had to stop due to heart pounding and palpitations. Also, increased air hunger - I was short of breath without any exertion at all. My chest felt so tight.
It really increased all my symptoms including things like brain fog, dizziness, irritability, muscle pain, leg heaviness.
It stays in your body for TEN days after you stop taking it.
While some things felt better the day I stopped, a lot lasted at least another week.
And then I noticed a few improvements - my headaches were better, muscle pain was better and I could run up a flight of steps without gasping for breath.
These improvements lasted about two weeks.
Then I started to get symptoms back again.
Would I take it again?
YES - I am considering doing it again and this time following it up with more antimalarial stuff.
Coartem is a tough drug to take!
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seekhelp
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I too had the heart pounding. Scared the crap out of me and I only did 3 days! My BP was up to 170-180/105. Scary. It seems like it comes with big risks.
Why would you take it again with those serious reactions? Why not another anti-malarial with a safer profile Opus?
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I have had some real bad yawning today, but I'm not sure if that means a whole lot. It was like I'd yawn so hard I couldn't catch my breath while mid-yawn. A scary feeling actually. 
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All the research in the world can't buy you that magical peace of paper with a DEA # on it. Sparkle7, where do you do your research (drugs.com?)
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