My AZT + RAL Trial

[jimbob]

hang in there sue, you're one tough chick! sending in my request to Merck today after my dr. fills out her part. hope to qualify and start Ral soon. I guess i'll be the next guinea pig, but I don't mind. desperate is as desperate does!

 

[alphahusky]

My usual overlong post...

Hey Ladybug,

My resting pulse is usually 96 (been that way since the vaccine I got at 12 that crashed my immune system- have no idea what it was before then) and I have severe tachycardia. My pulse has stayed at 108 sometimes when I've held a job, etc. The highest it's ever gone is 200 (going off of Xanax). Last summer I had a thyroid storm and my usually extremely low BP went to 171/114 and my pulse was at least 126. I went off thyroid meds and on propanolol for a brief time. I used to be on atenolol which at least helps with OI, but my OB won't let me take any beta blocker during pregnancy (it was a huge issue with my daughter), so I'm having hellish OI symptoms these past two years and can't wait for this pregnancy to be over.

I have hypothyroidism, and I had thyroid storm when Armour thyroid disappeared last summer and I had to go on synthroid and then back to Armour. Synthroid has a very long half-life, so when I went back on Armour (my pharmacy never notified me about these changes, so I'd also had to go off all thyroid meds for about 3 days), my thyroid went nuclear. However, my endocrinologist told me that the blood test taken that day won't give a real picture of what's going on- it takes 6 weeks to show the actual spike. Seems weird to me, and it took a long time for my heart rate to get back down below 100, but it (usually) is. This just sounds so much like a thyroid storm I can't help but wonder if the medication somehow messed with your thyroid, and the test results won't show it yet. Also, they need to do more than a TSH. You need to do a full workup of T3 and uptake of T3 and T4 to truly know what's going on with your thyroid, and most doctors and ER's do not do that test.

So some tips from someone who lives every day with a pulse that high, and with it higher (and I refused to even go to the hospital with the thyroid storm, too phobic, I promised to do bed rest and take the propanolol and check with my endo right away and that was good enough), I would strongly suggest a stronger beta blocker than atenolol, though it saved my life with OI, propanolol works better on getting the heart rate lower (it got down to 60- verified in a doctor's office- while I was on it!). Also yes, slow, deep breaths in through the nose and out through the mouth- and if you can breathe down into your belly, some of us can't do it and if you can't do it it might make you feel more anxious, it took me years of on and off yoga to be able to do it- but if you can, like ten of those can actually lower your BP and pulse really quickly. When I was pregnant with my daughter, my BP rose and the doctor panicked, and since I'm so doctor phobic and won't do hospitals (except for my daughter's C-section), I stayed in the office and laid on the table for about 10 minutes and did a few rounds of that, and my BP went down to my normal (about 96/68).

The other thing I just learned is to lightly massage your pulse point in your neck. Lightly- too much pressure and you'll pass out. But just like 20 seconds of light massage can lower the pulse quickly. It's done in hospitals. I'm amazed if they didn't do that when you were in the ER.

Truly, I hate to say this, but if you focus on the thumping, skipping and the rising pulse, it will rise higher. It's so hard to live with high pulse, but if I focus on it, I've felt it jump up. This sounds stupid and please don't anyone jump on me, but maybe try reading a really relaxing book in bed. Just focus elsewhere. I still wonder about your thyroid, and if you can stand it seeing a cardiologist or your regular doctor is a good idea (I am always hesitant to suggest going to the doctor! Severe phobia now), but see if you can get a thyroid panel again. And please try a stronger beta blocker. It will take your heart rate down enough for you to be able to try this other stuff, if that stuff makes you anxious.

I'm so sorry you had to stop the RAL. But if it isn't affecting your thyroid, I do also wonder about die off. My pulse will go so high so fast that I'm used to it being really scary high and skipping beats, but it must be really scary for someone who doesn't usually get that. My husband has issues with panic attacks, and he went to the ER this summer because he had like a tachycardia. I was amazed at all they did for him- 24 hour holter for a week, everything. I was ticked because my heart is probably what's going to kill me and way back when I still did doctors they treated me like I was nutso (although they did prove that I have actual cardiac pain by having me lie away from an ultrasound, where they watched my heart skip around and every time it did I had a pain they confirmed it coincided with a skip, but they didn't really say much about it), but for him, they jumped and did everything. Ultimately, it was diagnosed as "extra beats" and he went on a stronger SSRI (because for him, anxiety was causing it). It has worked a miracle for him. But his pulse never even made it past 100, so I was just rather- unsympathetic to some extent. I hate to admit it, but I was. But at least I know his heart is relatively okay. I've got a bunch of people in my family who died around my age now of massive heart attacks. At least I don't have to worry about him.

Please feel better and let us know how you are doing.

 

[jackie]

good post alphahusky! - lots of useful info for sue (esp. thyroid!)

Sue...wondering if you have had a recent count of your T-cell (cd4&cd8)...say, right before starting azt? also,...any neurological testing done in the past (such as lumbar puncture, brain/spine mri's, emgs or a "BAER" test, etc?

imo...I still hope you can arrrange an appt with a neuro if you are considering the possibility of ms. (of course, its difficult as many of our symptoms (the norm for us) are so common with both me/cfs as well as ms. (many have been mis-dx'd with ms AND many have had ms ignored! I suppose it "helps"!?...if your brain mri shows lesions...but even these can point to BOTH!)

If you can manage ONE new doc...maybe start with the neuro? (as he can possibly address your tachycardia at the same time he is testing you for any neurological problems (VERY common in me/cfs with/without Enterovirus &/or Herpes viruses, esp VZV reactivation), and "neuropathies", RLS are also common wth me/cfs...I keep thinking of your comments re your brain fog and "swollen Brain" sensations!
take care, jackie

 

[alphahusky]

good post alphahusky! - lots of useful info for sue (esp. thyroid!)

Sue...wondering if you have had a recent count of your T-cell (cd4&cd8)...say, right before starting azt? also,...any neurological testing done in the past (such as lumbar puncture, brain/spine mri's, emgs or a "BAER" test, etc?

imo...I still hope you can arrrange an appt with a neuro if you are considering the possibility of ms. (of course, its difficult as many of our symptoms (the norm for us) are so common with both me/cfs as well as ms. (many have been mis-dx'd with ms AND many have had ms ignored! I suppose it "helps"!?...if your brain mri shows lesions...but even these can point to BOTH!)

If you can manage ONE new doc...maybe start with the neuro? (as he can possibly address your tachycardia at the same time he is testing you for any neurological problems (VERY common in me/cfs with/without Enterovirus &/or Herpes viruses, esp VZV reactivation), and "neuropathies", RLS are also common wth me/cfs...I keep thinking of your comments re your brain fog and "swollen Brain" sensations!
take care, jackie

Thank you. I always feel my posts are just too long for anyone to read.

I agree with you also. I just hope she sees a neuro who understands this illness, or else she's going to get slammed. But that is a really good point.

I do also have RLS really bad, and some meds make it worse, like antihistamines. It seems to me that beta blockers have helped some with that, for some reason, so maybe it's suddenly appeared in conjunction with the heart stuff for a reason that I don't completely understand.


Ladybug- one little thing that can also help you just on your own figure if your thyroid is involved- do you feel any swelling on the front of your neck around where a man's adam's apple would be? Are you having sore throats? I can always tell my thyroid is doing something when it starts to swell.

 

[Forebearance]

Hi Sue,

I can offer a couple more experiences for you. Any time I take any kind of anti-viral, it increases my reactivity to mold toxins. So if I am around any mold toxins, my heart will start going into tachycardia. That's one symptom of toxic mold poisoning. That is why I have to start any anti-virals extremely gradually. Even the natural ones I take.

I take lots of soluble fiber to soak up the toxins set free by killing viruses, and I do gallbladder cleanses (apple cider vinegar in water with olive oil) to get the toxins moving out through the digestive system. If you can handle phytosterols, they are stronger than soluble fiber for soaking up toxins. CSM is even stronger. Is it possible your body can't eliminate the toxins that are being set loose in you quickly enough?

Sleeping outside this summer in fresh air might allow me to take more anti-virals. It seems like we CFS patients are going to have to be really careful when we start killing retroviruses. I really sympathize with how hard it is to fall alseep when your heart is pounding. It is like torture.

I've also had the experience of my thyroid suddenly perking up while taking an antiviral. It was a big surprise. And it's really hard to tell the difference between a thyroid thing and a reaction to too many toxins in the body.

Forebearance

 

[Mij]

"Sleeping outside this summer in fresh air might allow me to take more anti-virals. It seems like we CFS patients are going to have to be really careful when we start killing retroviruses. I really sympathize with how hard it is to fall alseep when your heart is pounding. It is like torture. "

Forebearance, anti-viral drugs, anti-retroviral drugs do not kill viruses. Instead, these drugs block steps in the process through which viruses reproduce, they keep them in check. I think we need to be clear on what these drugs actually do.

Mij

 

[Forebearance]

Thanks for correcting me, Mij. As you can see, I'm not real clear on what anti-retroviral drugs do.

I take a couple of natural anti-viral things that somehow either kill or allow the immune system to kill the viruses. At least, I think that's what they do. So I've gotten used to thinking of the situation that way.

Would blocking the reproduction of a retrovirus cause stored toxins or retroviral toxins to be released? Sue is having a reaction that sure sounds a lot like an overload of toxins.

Sue, I should add that phytosterols are available at any health food store. And even at supermarkets. You can buy Promise Activ Supershots, a yogurt drink with phytosterols in it. But CSM, or cholestyramine, is a prescription drug. With both things, you should eat as much healthy fat as possible, because they soak up fat as well as toxins. You can get really dried out and constipated without the additional fat. Ah, the stuff we go through.

Forebearance

 

[Robin]

I take a couple of natural anti-viral things that somehow either kill or allow the immune system to kill the viruses. At least, I think that's what they do. So I've gotten used to thinking of the situation that way.

Would blocking the reproduction of a retrovirus cause stored toxins or retroviral toxins to be released?

I'm no expert but I would say no.

A virus is simply a little thingy of DNA or RNA; it can't reproduce on its own so it hijacks your cells, recodes them, and makes them into little traitorous virus makers. In response, your body makes antibodies or little molecular blobs that stick onto the viruses so they can't infect your cells. Eventually, a macrophage will eat the emasculated little viruses like Pacman. Your body is constantly making new cells that replace the infected ones.

Antiviral drugs work either by blocking viruses from infecting cells or imposing viral birth control -- stopping reproduction. There are no toxins except the viruses themselves. Virus is actually Latin for "toxin".

Sometimes parasitic organisms can break down into toxic waste material; for example, dogs that have heartworm infections are at risk when they're treated because they can have an anaphylactic reaction to the waste byproducts in their blood. Another example of toxic waste are endotoxins resulting from treating lyme or syphilis infections. This happens when toxic waste products being created more quickly than the immune system can clear them. (The symptoms are not caused by the toxins but by the immune response: an increase in cytokines IL-6 and IL-8, which ironically appear to be elevated with CFS). But, remember that viruses are much smaller than bacteria and don't really break down into anything; they just get consumed.

I have no idea what's wrong with Sue but I hope she feels better soon. It sounds very scary.

 

[slayadragon]

I've taken Valcyte and Famvir (antivirals targeting herpes family viruses) in conjunction with mold avoidance.

My mold reactivity temporarily went up while on those drugs. Eventually, it went down to substantially lower than where I started, but (with the Valcyte) it took time.

I increased my mold avoidance activities in order to compensate. As a result, I have had very little problem taking Valcyte or Famvir.

(Prior to mold avoidance, I tried taking a small amount of Famvir--250 mg, which is about 1/4 the usual dose. It made me more sick than Valcyte did to other patients and lowered my health baseline substantially even after I stopped the drug. Being able to take both drugs without anything more than a minor problem as a result of addressing the mold was a bit of a surprise!)

The problem with herpes viruses is that they hide in cells where the acquired immune system cannot see them. The Natural Killer Cells are supposed to be taking care of them, but of course our NKC's are broken.

Herpes antivirals prevent the viruses from "hooking onto" cells, where they hide and replicate. As a result, when the drug is started, a whole bunch of the viruses get pushed out into the "open."

It is at this point that the acquired immune system (B cells and/or T cells) are supposed to put them in check. Unfortunately that part of our immune system is pretty broken too. Thus, the viruses sort of float around, causing even more acute damage than they did when they were hiding. This is why people get "die-off" or "herx" reactions when taking those drugs.

Eventually, the acquired immune system is supposed to catch up with them. This takes a while, even under the best of circumstances for us.

A question is what the mechanism is for the "die-off" to be increasing my mold reactivity. Insofar as the HHV6a and other herpes viruses create inflammation themselves, this makes some sense. The combination of the increased viral activity inflammation (as they float around in the "open") and mold exposure inflammation likely would be more intolerable than either one alone.

I tend to think there's something else going on too, but that would just be speculation on my part.

Does this sound consistent with what might be going on with the antiretroviral drugs?

I used to get tachycardia with mold exposures too, before my reactivity went down.

Insofar as it happens especially after showering or when lying in bed, I would look first to mold exposures as the cause.

Best, Lisa

 

[slayadragon]

Rather than try to further guess what Sue's symptoms might be from, I'd like to ask a general question.

Of those here who are considering taking or who are taking any sort of antivirals, do you have ANY idea what the status of your living environment is with regard to toxic mold?

I'm not talking about getting a tent and moving to the desert. I'm just talking about finding out whether you're living in a moldy environment....even according to ordinary standards.

My own experience was that when I was unknowingly in a moldy house (in which no one could smell any mold or see any mold), I couldn't take even 250 mg of Famvir (a 1/4 dose) without getting as sick as most people were on Valcyte.

After about six weeks on the Famvir, I took a very short break from it. I felt really good and told my friends that I'd found the answer to getting well from CFS. (Remember when we all thought that herpes drugs were going to be the answer, back when Montoya was screening patients for his trial?)

Then I restarted the drug and got the horrific die-off again. Then I got a bad cold. The bottom fell out and I was in bed continuously after that, in a twilight existence that I never thought I'd get out of, for six months after I finally stopped the drug (and until starting mold avoidance).

Eighteen months after addressing the mold, I was able to take a full dose of Famvir without any problem. Then I added a full dose of Valcyte, again without any big problem (just some mild tiredness).

My mold reactivity went up somewhat on those drugs (for 3 days on Valtrex, for 3 months on Valcyte), and I imagine that would have translated into "die-off" if I'd not been SO persnickety about mold avoidance.

But the compensation is....now my reactivity to mold has gone down a whole lot, my brain is at pre-illness levels most of the time (which is the symptom that I really wanted fixed), and other than feeling hung over for an hour or so every morning from continued detox and (at this moment) an odd case of TMJ, I'm FINE. Like a normal person.

A really healthy normal person.

It's been eight months since I started the Valcyte and two and a half years since I found out about the mold. My progress has been steadily upwards. This is not a fluke, and I'm not suggesting or hinting that people follow my lead after six weeks of a trial.

What I'm doing is real.

I understand why people would take experimental drugs. This disease is horrible. Living a twilight existence forever is not, in my view, living at all.

But if folks are that desperate to get well (as I was), I can't understand why they would not do everything they can to make the experiment a success.

I'm not talking about living in a tent in the desert, necessarily.

I understand that CFSers have a hard time pulling that off.

I'm just talking about giving the drugs a chance to work by not severely handicapping oneself from the starting block.

I really don't mean the following question to be a rhetorical one. I really want to know the answer.

Are folks really so attached to their "stuff" that it's more important than getting well?

I can see if they are, actually. "Stuff" is important. But if people are taking experimental drugs, I can't believe that they don't REALLY want to get well. And in that case, I have to believe that "stuff" become secondary.

So this is my suggestion.

Get the damned ERMI test. See if, even by ORDINARY standards, you've got mold. If so, find somewhere else to live (again, do the ERMI to see), at least for the initial time that you're on the drugs.

Preferably, leave all your stuff behind, if do move.

As I found out while I was still living in the mold, these drugs can be dangerous if they're not taken under optimal conditions.

As I found out after I got out of the mold, these drugs (even the Valcyte, which people now think "doesn't help") can be remarkable things, if they are taken under optimal conditions.

Give the drugs every chance to work. It's a waste of time, and a waste of an opportunity, not to.

Best, Lisa

 

[omerbasket]

I guess that you should wait some few more days in order to determine if the antiretrovirals had something to do with your tachycardia, since I guess their effects might still be in your system (even if the drugs are out of your system). But, I'm no scientist...

 

[jackie]

Interesting, Lisa...YOUR statement that "something else is going on" is one I just heard from my own ID doc (the other day) as he examined my recent T-cell count (nearly 1500 cd4) and yet I have (constant) chronic reactivated vzv (shingles).......even on 4 (steady) years of 3200mg acyclovir.....and I'm not the only one that this is happening to...according to him! And I agree with you Lisa..I consider the AV's to be a wondrous thing, in my case! (even something as discounted and "old fashioned" as Acyclovir! - but do your best by giving them a "helping hand")

Yes...avs are meant to block processes/suppress...the viruses....while your own immune system takes care of them...but, exactly! we are "broken"! And many of the viruses some of us have (enteroviruses, herpes etc) are "stealth/smoldering" viruses, and often difficult to find. (AND we can re-infect ourselves by the modes of transmission).

(OFF TOPIC anecdote...I just spent 4 long weeks in a house of sick people (flues/respiratory inf/bronchitis/pneumonia etc YUCK!)...I was the only one that DIDN'T catch anything and was stuck with all the "nursing" duties - to the best of my me/cfs dibilitated abilities! - there's another thread going on about why some of us don't catch "colds")

re: your question on the mold issue...I can't be certain, but the AV's have made a remarkable difference (actually a striking one!) in my brain issues (cognitive/memory etc. - in other words I am improving in this one area) - so I'm ASSUMING I'm ok...and have mysteriously never felt any "die-off" on the long years on av's (and yet I was expecting to have, and waiting for, something like this!?) all so confounding!

sue...glad to hear of your neuro referral and mri! Hope all goes well......jackie:Retro smile: (did you experience tachycardia BEFORE the azt etc?)

 

[cfs since 1998]

hi lisa, thanks for the suggestions.

tachycardia continues. i have been off RAL 5 days and off AZT for 2 days. brain MRI and neuro appt is being scheduled.

can feel CFS symptoms returning slowly.

sue
xoxo

Sorry you are deaing with the tachycardia. If one of your doctor's hasn't suggested to it, you perhaps should ask to try a beta blocker.

We touched on this on chat but it seems like when CFS patients start antivirals, they have a flare-up of the virus they're supposed to be inhibiting. I guess the same thing can happen with the antiretrovirals and maybe XMRV causes tachycardia. If that is the case, the drugs might actually help the tachycardia over time, even though it seemed like they caused it.

Another thing to consider is testing hormones like cortisol and ACTH.

Good luck.

 

[Forebearance]

Wilddaisy, I take Lauricidin and Virastop. They're discussed on the natural antiretrovirals thread.

Sue, good luck with your doctor's appointments. I'm really sorry to hear that your CFS symptoms are returning.

Forebearance

 

[boomer]

That is wonderful news that you responded so positively. I'm going to be watching your progress for sure. Best wishes that you get better soon!

 

[citybug]

There are threads discussing use of folirinse and perque form of B12 together to turn on parasympathetic nervous system. Some people are saying brings down heart rate for them. I haven't tried it yet.

 

[Gerwyn]

thanks. i just cannot wait to get back on raltegravir. at least i know i can feel so much better in the future when i am able to take the drug again.

sue
xoox

AZT has an extremely high lipid solubility.It is therefore highly likely that your body has developed a" resevoir".As AZT leaves your body more is drawn out from the fatty tissues.I dont know how long it takes.Tachycardia is a side effectof AZT .Only a Dr could tell if that was the case with you.

Hope it helps

 

[natasa778]

We touched on this on chat but it seems like when CFS patients start antivirals, they have a flare-up of the virus they're supposed to be inhibiting. I guess the same thing can happen with the antiretrovirals and maybe XMRV causes tachycardia. If that is the case, the drugs might actually help the tachycardia over time, even though it seemed like they caused it.

It is called Immune Reconstitution syndrome. It is very common in HIV positive after starting antiretrovirals. Usually reactivated herpes viruses are involved, but could be any others really

You could take this paper to your dr:
BACKGROUND: The first diagnostic hypothesis in a middle-aged patient presenting with inaugural ventricular tachycardia would be coronary artery disease. If the work-up lacks arguments for this etiology, other cardiac conditions may be involved (dilated cardiopathy, hypertrophic cardiopathy, valve disease arrhythmogenic dysplasia, long QT...). CASE REPORT: A 52-year-old male patient was referred for inaugural ventricular tachycardia. The initial work-up including echocardiography, coronography and the electrophysiologic study provided no explanation. The ventricular tachycardia was later attributed to viral myocarditis. DISCUSSION: Viral myocarditis should always be entertained in patients with unexplained ventricular tachycardia, particular if a viral context is present. In such cases, antibody-labeled scintigraphy is the choice exploration. This noninvasive technique provides determining diagnostic information and helps orient patient management
http://www.ncbi.nlm.nih.gov/pubmed/9879316


Viral causes of human myocarditis: http://www.ncbi.nlm.nih.gov/pubmed/19664576


Just an alternative explanation to side effect of antiretrovirals...

 

[Jenny]

Another term for Immune Reconstitution Syndrome is Immune Reactivation Inflammatory Syndrome (IRIS). This link describes it in some detail:

http://www.thebody.com/content/art2525.html

Jenny

 

[energyoverload]

Ladybugmandy,

I've been following this forum and your thread for a while, but only recently signed up, as I haven't really been able to get my thoughts into words until recently. I have some ideas as for treating the heart palpitations - out of my own personal experience, I've found that aspirin, taking omega 3 & 6 fish oil and LIV 52 tablets really helps eliminate almost all of my chest pain and rapid hearts. The aspirin keeps my blood flowing nice and freely around my system, reducing platelet clotting. And the omega 3 & 6 are really beneficial for your good cholesterol. Also the LIV 52 seems to prevent any adverse increase in liver function tests - as what may happen when taking the AZT?? My tests for blood blotting and cholesterol all came back 'within the range' and yet the second I stop taking this combo of supplements my chest pain returns with avengance. I do not believe some of these blood tests are very reflective of our true symptomatology.

Hang on in there,

Jake