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Author Topic: Feeling terrible again with Raltegravir and Tenofovir/ Emtricitabine. Chills etc  (Read 692 times)

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Offline poztraveler2014

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Hello again,

I have been getting really ill lately. I am short of breathe, my hand get really cold and i feel really terrible, dizzy and tired, i also get chest pain around the lower heart area.. I have asked my treating doctor and has done nothing for me. Is this normal? what is going on? i really can't stand it anymore, i can't even really work. I've ended up in the ER twice already. I get no real answers from anyone.
« Last Edit: November 09, 2014, 10:37:04 AM by poztraveler2014 »

Offline Miss Philicia

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Reading your old posts I see that you have pre-existing anxiety issues -- is that correct? So after you go to the ER not once but twice what is their verdict each time? Part of me says if your primary doctor is being dismissive either 1) he's writing these episodes off to panic attacks or 2) he's a quack. It's either one or the other -- you're the patient, what's your opinion? There's no way for any of us to independently assess what's going on here.

You need to learn, as a newly diagnosed patient, to advocate for yourself with your doctors. You spent the entire month of July upon registering here complaining about feeling sick a week after starting HIV meds, after being diagnosed for five years and for some odd reason deciding moving to Ecuador was a great idea. Then in October you cam back and claimed you didn't feel bad anymore so I am confused. When were these ER visits exactly? Were they between the October post and this current one?

I guess you basic question is "Is this normal?" -- and my answer would be no, unless the patient allowed so much anxiety about starting HIV meds to build up for five years then well, yeah I suppose it is normal to have persistent panic attacks. If that is what the ER and your primary care doctor are telling you then you need to be seeing an psychiatrist for that. If they are telling you no, these are not panic attacks then they must be saying something you're not relating to us clearly.
"Iíve slept with enough men to know that Iím not gay"

Offline poztraveler2014

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Thats the point i did feel terrible starting the meds but then i slowly started to feel less terrible. I then had a cold/infection/tonsillitis at which point a lymph node i've had for years blew up. They were thinking it was TB, i felt bad but i recovered.
 I had the lymph node removed and it was CMV, i checked with the doctor he said it was no big deal.
Although out i have had the cold hands and shortness of breathe but it was occasional and i figured that was part of the meds. About 3 weeks ago i started to have some severe episodes of that, i felt terrible, dizzy, i was pale, my hands were freezing, i felt like i was gonna pass out. That started to happen more and more frequently.
Last friday chest pain, really severe chills shortness of breathe, freezing hands i had to leave work and run to the ER. They did a CBC they said that was ok but they could do nothing, i had to wait to talk to the doctor.
I went and i spoke with the doctor he said it was some infection even though the CBC was normal. I said ok, this is all normal, i'll just have to live with it. Then Friday it hit again but even worse i could barely breath. I went to the ER it took a long time for me to kinda recover, in my past panic attacks stop when i get to the ER this kept going.
They gave me saline in the veins and said i had a slight infection and my electrolytes were out of balance. After the saline i felt better but then its started again.
I know my panic attacks and they cause everything to go up and not things to go down. The doctor simply does not consider the pills to be the issue.
I understand i have panic attacks and i know that but this kinds of attacks are simply not something that is normal for me.
 

Offline Miss Philicia

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Personally then I would be much more insistent with the primary care doctor on figuring out what's to be done -- does he think you need to see a specialist for x,y, or z, etc.?

I don't think either think it's necessarily your HIV medications but you seem convinced they are the cause. Unless you are willing to change to an entirely different regimen, which I'm sure isn't easy in Ecuador, then I don't know know what to suggest on that front.

"said i had a slight infection and my electrolytes were out of balance." -- I don't know what this means if the ER didn't give you more information. What kind of "infection"? Sounds like they're just making something up to get you out of the ER.

I realize you are dismissive of the panic attack issue because it's not the same as it has been in the past, but I still think it's an area worth exploring with a proper psychiatrist. It's always possible that they've increased in severity. Do you take any anti-anxiety medication and/or see a psychiatrist regularly?
"Iíve slept with enough men to know that Iím not gay"

Offline poztraveler2014

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Electrolyte inbalance is true i saw the exam results and they suggested it was the fault of the HIV meds. They said a slight urinary tract infection. I also saw those results. So im sure it was true, also ecuadorian medical treatment is pretty crap so i was treated perfectly fine in that sense. in fact they left the IV on for much longer becuase they went to lunch. They left a women with her finger broken and bloody to bleed. So i assure it was no attempt at getting me out quickly, they take their time.

I should see a pyschologist, i am looking for a good one. I tried to see the hospital one but he was really terrible. I do need psychological help. I am in bad state of mind, undoubtably. However the doctors have suggested a Thyroid exam as being the cause of some of these issues. I havent done it because of the difficult of getting it done in a private place and the fact that for a public place i need to wait till January.

Are you really convinced i am ok? i am more then willing to find a solution to this, i am so tired of not being able to work or go out. It makes everything really difficult.

Offline Miss Philicia

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Are you really convinced i am ok? i am more then willing to find a solution to this, i am so tired of not being able to work or go out. It makes everything really difficult.

I'm not a doctor (obviously). Like I said from the get-go, it's either panic attacks or it's something else they've just not figure out yet. You know when something physical goes wrong in your body it sometimes can take a while to diagnose. In the meantime I recommend sorting out the psychiatrist issue and, in the context of you stated pre-existing depression and anxiety issues, explore this avenue. You still didn't say if you are on any meds for mental health issues.

Tell me -- in the five years leading up to going on HIV meds did you have a lot of anxiety about that particular issue, or was it not a big deal for you to contemplate taking the medications?

Otherwise next time you end up in the ER hopefully they'll find something more concrete, though I hope it doesn't come to that (going to the ER a third time.... ER's are stressful in themselves IMO)
"Iíve slept with enough men to know that Iím not gay"

Offline poztraveler2014

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I am not on pysch meds, i have been in the past but after trying all the SSRI and none of them working and trying lamictal but getting a rash it was like no more meds. I was see a psychologist in the states who i liked i wasnt getting to far but at least i felt a sense of calm and peace after talking with her. So i want to find something like that here. I believe a lot in the power of psychological therapy, i have a minor in it and i really enjoy it so i certainly want that kind of help but not the pills.

I did have plenty of anxiety about the pills. Hence why it took 5 years to start. I was scared of things happening like they are now. Sure it could easily be a self-fulfilling prophesy but for a while i was feeling ok. I was even able to stay out all night a bar something i hadnt done since i was like 18 so i was feeling kinda good but then the improvement i'd made went sour.

Actually i enjoy the ER honestly its a decent ER at this hospital. And if you are nice to the nurses they are nice to you. Its just the regular doctors are not so good in my opinion. When they removed the lymph node i cried and i couldnt walk from the pain.

Overall i dont necessarily believe the meds are causing this directly but i think they might be triggering something else.

TBH well things are bad here in many ways they are also good in that its free. So i dont have to be afraid to go to the ER if i feel sick. In the US when i've gone its been really nice and all but the pills is huge. I have like 3 unpaid ER visits. I will never pay, so thats add to the stress. Here i even get meds for free with no wait in the ER pharmacy.

Overall its bad here but i have a job here and my students respect me and many of them work for the government in health positions. So thats that



Offline Tonny2

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Hello again,

I have been getting really ill lately. I am short of breathe, my hand get really cold and i feel really terrible, dizzy and tired, i also get chest pain around the lower heart area.. I have asked my treating doctor and has done nothing for me. Is this normal? what is going on? i really can't stand it anymore, i can't even really work. I've ended up in the ER twice already. I get no real answers from anyone.

    ojo     hola poztraveler

I'm no doctor, but it seems to me like anxiety attack...I've had same symptoms, same visit to the ER, being there feeling better....I'm taking now an antidepressant, no more attacks...saw a psycologist, he just told me to follow the AA 12 steps.....so, if you want to try, read them...personally, I didn't loke my psycologist....good luck and I hope you feel better....hugs      ojo

Offline Miss Philicia

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poztraveler2014, I empathize with your plight I do -- I have never been successful with SSRI treatment. You know some people simply lack the enzyme to properly breakdown an SSRI, which is why if a patients goes through several with no response and bad side effects they should be given another class of medication. Also, there are separate medications for acute anxiety.

I also agree, if this is what you were hinting at, that psych meds are overused (absent of a chemical imbalance) and should be used in conjunction with one-on-one cognitive behavioral therapy so the patient can learn to control their anxiety levels independently and thus curb or eliminate panic attacks. However, these sessions take time and/or are not adequately covered by insurance schemes.

After reading your last post I am rather convinced you are having panic attacks, but as I said previously I am not a doctor nor am your life partner who can see what's happening to you on a daily basis.
"Iíve slept with enough men to know that Iím not gay"

Offline poztraveler2014

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i appreciate your help but at this very moment i am calm and have not real anxiety and yet i feel terrible chills. It feels like i have a fever and my hand are starting to get cold. It really feels like a fever thats the point but its not. Then my stomach starts to churn and its turn to diarrhea
« Last Edit: November 09, 2014, 08:19:28 PM by poztraveler2014 »

Offline Miss Philicia

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Then you need to go back to the doctor. Posting about it on a message board isn't going to help you get better, is it?

If you have diarrhea why don't you go to the store and buy something over the counter for it? That is easily addressed. Either you have a fever or you don't.

If it's not an actual panic attack you could still be having some psychosomatic responses, but again if you are completely convinced that there is not mental aspect to any of this then GO TO YOUR DOCTOR. If you don't like his non-response then you'll need to find another doctor and obtain a second opinion. Otherwise you are just running in circles.

I am not trying to sound harsh, I just don't understand what reply you want and you've been posting about the same issue since July, more or less.
"Iíve slept with enough men to know that Iím not gay"

Offline Tonny2

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i appreciate your help but at this very moment i am calm and have not real anxiety and yet i feel terrible chills. It feels like i have a fever and my hand are starting to get cold. It really feels like a fever thats the point but its not. Then my stomach starts to churn and its turn to diarrhea

     ojo    I'm sorry you are still feeling this way, go and look for a second opinion..I've been taking Raltegravir (Isentress) for almost eight years and I haven't have a problem, I took tenofovir (viread) I will get acidosis, after ten days of of starting treatment I would start getting sick, so I stopped it, the other med you are taking, I have not idea what it is...so, I just hope you follow Miss Philicias advice and I reaaly feel for you, wixhing you the best of luck, and I'm sending your way a big hug     ojo

 


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