seekhelp
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Member # 15067
posted
Wow, I've had a horrendous day so far today. I'm currently on 2 tablets of Malarone, 2 drops GSE (new as of last 4 days) and 15 mcg of Armour Thyroid (for 9 days now).
I wasn't feeling that great this morning (what's new), but not horrendous. I keep getting some pressure/queasiness in my stomach under my left rib. Not severe pain, but kind of a stomach dropping feeling associated with some weakness.
I tried driving to do a few errands today. Nothing too much. Just quick trips in and out of stores with very limited walking. I've been getting tired very fast doing stuff.
Well, as I'm finishing my last errand, I'm just feeling exhausted and pressure in that area of my stomach. My left arm feels kind of heavy too and my ears are popping some. I'm three miles away from home and start heading back in my car.
I get two miles and am feeling more and more worse with anxiety. I do a loop around to go to the side streets to get home. As I'm in the turning lane all of a sudden all hell breaks loose. My heart feels like it's pounding, I get really really weak, chest hurts, short of breath - no tingling, chills, jaw pain. I thought I was passing out or having a heart attack.
i stop the car in the middle of the lane and get out and try to flag someone for help. I didn't know if I was going to pass out. No one stops/helps me as I'm flagging them. After 1-2 minutes, the chest issues get better. I somehow got in back in the car (shouldn't have) and drive the last 1/2 mile home.
I take my blood pressure and it's 197/105. Pulse was 94. I started breathing into a paper bag to see if that would help. Eventually after 25-30 minutes, my BP reduces to 140/high 80s, pulse drops to low 80s.
That was 4 hours ago. I'm still pretty shaken up about it all. I never know what to do.
I'm taking a medication break for a few days to regroup. Ever since I've taken even this little dose of Armour Thyroid, my heart has felt kind of jittery. I failed two other times to handle thyroid meds. I think I'm done with them.
I don't know if was a panic attack or something else. I had an EKG last week and all was perfect. I had an echocardiogram 2 months ago that was totally normal. I'm so ill many days I can't differentiate normal stuff from others anymore. It's hard to keep going like that.
It seems like the longer I'm standing up, the more problems I get. I keep getting all kinds of head pressure too.
Do I do another trip to the doctor today or what? Hmmmmmm..
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Jane2904
Frequent Contributor (1K+ posts)
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posted
Boy Seek , I am so sorry you are not doing well.
I wish I knew of something to help you. All I can say is a couple of years ago our daughter was borderline hypothyroid.
I asked the Endo to please try a tiny dose of Thyroid med. She finally agreed and daughter could not take even a tiny dose.
She felt hot, dizzy, lightheaded and on the first day got confused on who she was.
I called the Dr. and they said it was not the med, even the Pharmacist said the med would not cause that reaction.
I stopped the med and the symptoms got better. The med was not Armour but regular thyroid med.
I hope someone comes along and can offer advice.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have high normal free T3 levels. I tried to tell my LLMD's PA to test again, but she refused. I think that wasn't the brightest move as Armour has T3 in it. My TSH usually is between 2.0 - 2.5, but I got one reading of 3.98. Hence the reason I decided one more time to try Armour.
I think that PA still has stuff to learn and takes a few too many risks. I'd rather play safe and know the whole picture before starting.
I'm guessing more is going on that this though. Scary nonetheless. I think I have uncontrolled cytokine flares when treating/killing anything. My eyes are pouring liquid, nose is too. Head stuffed up. I just look puffed up. Sometimes I wonder if steroids would help me more than all this stuff.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lululymemom
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posted
I think you really need to have a holter monitor for at least 48 hours to see what is going on.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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mojo
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Member # 9309
posted
Seek- it sounds like a panic attack and it could have been caused by overdose of t3, I think.
It happened to me when I was put on T3 - my resting heartrate was super high and I woke up from a sound sleep with a full fledged panic attack.
Posts: 1761 | From USA | Registered: May 2006
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posted
I couldn't handle Armour. I think it might be wise to stop.
Hang in there, seek!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
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posted
I can't believe no one would stop to help you. That is a really awful experience - not just the physical symptoms but the lack of response from others.
I would make an appointment with your doctor ASAP. Once the pharmacist made a mistake reading the decimal point on my thyroid medication and gave me ten times what I was supposed to get.
I was on it for months but I did not have what you experienced. I could not sleep, was anxious and irritable and felt very hot with some heart palpitations. This was a long time ago - not connected to lyme.
I also had thyroiditis and had similar more intense symptoms. I actually collapsed during that time. I was exhausted but could not settle down or sleep.
I hope you find out what is wrong! I wonder if it had anything to do with the malarone. Shortly after starting Mepron I wound up in the emergency room but that turned out to be irritation of the vagus nerve controlling heart rhythm etc. Basically indigestion!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
"I wonder if it had anything to do with the malarone. Shortly after starting Mepron I wound up in the emergency room but that turned out to be irritation of the vagus nerve controlling heart rhythm etc."
-
Good point... I ended up in the ER twice in 9 days while first going thru babs treatment. (heart issues)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
It might be a number of things but starting thryoid medicine may mean you need to check your adrenals. There are some who would say to fix adrenals, thyroid and then sex hormones (in that order)
Many find they cannot tolerate thyroid medicine because their adrenals are in bad shape and a good indication of adrenal fatique is a bad reaction.
Checking adrenals can be accomplished through a saliva test taking samples at four times during the day. Of course, Lyme and co. and particularly Babs complicate anxiety.
Posts: 28 | From maryland | Registered: May 2010
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Lymeorsomething
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-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for the replies everyone. I think I'm going to see my doc tonight (Urgent Care / Regular Office) just to rule out anything serious. It's not something to play around with if I make a mistake. Better safe than sorry.
I have had the adrenal testing through saliva. Mildly low, but not too bad. I have very low testosterone as well. None of these hormones ever made my life better when I tried to supplement. Odd.
I have been on the Malarone for 45+ days now. I didn't even get that reaction at higher dosing, but who knows. The GSE is the new factor in the equation. it seems crazy, but it makes me wonder.
Also, I'm not addressing Lyme right now as none of these docs will put me back on Abx. I've been off them since late Oct-10. Maybe after 120 days, all hell is breaking loose.
SO SICK OF MAYBE THIS, MAYBE THAT. I can't take much more of this w/o losing my sanity - whatever is left.
I'm stopping the Armour. I'll see about the holter monitor. I don't know if my PCP does that. I have an appt with a cardiologist next week - IF I make it that long.
Other ideas are welcome. Does a panic attack present as highly elevated BP with mildly elevated pulse (15-20 BPM higher than normal)? How could your heart feel like it's pounding so hard if your pulse is below 100? It seems impossible.
Nefferdun, yeah it was a bad bad feeling to get no help. It makes me lose faith in humanity and makes me sick thinking of it.
My LLMD is all about natural this, natural that. They seem to prefer Armour. All alterative docs automatically do...same with natural testosterone cream and blah blah blah.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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glm1111
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posted
Really sorry you had such a bad day. I have had thyroid issues (Hashimotos Thyroiditis) and neither the synthroid or armour helped me.
I just googled coconut oil + thyroid because i remembered the connection of it healing thyroid conditions.
Lots of interesting info. I have taken a lot of coconut oil in the past and still take some. I don't seem to have any thyroid issues any more.
Don't know what to attribute it too, but the coconut oil may be something worth looking into. Plus it's antifungal and there is a connection also about losing weight when on it.
Hope you feel better.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I got back from the doctor. They did an EKG and it was perfect. He thinks it was a panic attack and FINALLY gave me some Xanax....a few pills.
I don't want to get addicted, but I need something to control these when they happen. At the very least I need some form of convincing that's in fact what they are.
I'm pretty confident they are provoked by something though like herxing or illness.
Hopefully stopping the Armour will help some. Now I need to mentally deal with what happened and the residual effects. Not easy.
I see a cardiologist next week so perhaps more will come out of that. i guess if I don't make it one day from all this, so what.... I'm pretty fed up with this crap at this point after 3.5 years of suffering.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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djf2005
Frequent Contributor (1K+ posts)
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posted
Dude you NEED benzos for times like these.
I have said this before, get them.
DO IT
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
"Does a panic attack present as highly elevated BP with mildly elevated pulse (15-20 BPM higher than normal)? How could your heart feel like it's pounding so hard if your pulse is below 100? It seems impossible."
-- YES, from what I hear. Glad the dr gave you some pills for next time. Use them sparingly. (guess you'll have to for now!)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
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posted
Sounds very much like a panic attack to me. No one wants to get addicted but if they help you function better and deal with this illness better so be it.
I'm still on Klonopin nine years after not having lyme any more. I don't even think about it about it now thou at first it bothered me that I had to take it. Klonopin helped me get through the worse times, including panic attacks. It's a small price to pay when dealing with such a difficult illness.
Glad to hear that you went to the hospital and nothing serious was found and not to down play how horrible panic attacks are but they can be treated, at least with meds.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
(I can't believe no one would stop to help you. That is a really awful experience) That's Michigan for you. Especially the county Seek and I live.
Seek just wondering why you are taking this Armour. What the heck is it? Is it over the counter or prescription? Did a doctor say to take it.
Here's what I think is going on because I've been there. Your sick. Your vagus nerve is infected inflamed causing you this distress. Then mentally even though you may think your controlling it your fight or flight response is kicking in. Adrenalin drop.
It's all Lyme related. I got it myself. I was rushed into St Joes Livingston HR 280 BP 220/160, they thought it was heart attack, nope kept me over night ran tests let me go. Later diagosed with POTS.
All I can say is it will get better. Also when you see Dr Z next week he will for certain put an event monitor on you for a month. Every time you feel these symptoms ie fast HR, high BP push the button and record.
He also is going to prescribe the beta blocker which will block the flight or fight response that is kicking in. Remember what I told you about politicians, sports stars, singers, etc. The majority take beta blockers so they can block out the flight or fight anxiety to preform. This will help you the most.
Also I wouldn't worry about any addiction to any xanax or anything else. These are temporary until you get better. Your sick and if these help screw the addiction deal with that later. Call Cheryl at Dr M have her call some in to CVS.
Also I know it's hard to do but quit thinking about it let it go. Your mind is working over time. Your heart is strong!
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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sparkle7
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posted
I'm not very experienced with these health issues that you mentioned but GSE is very strong stuff. It's always best to ramp up anything new in the way of supplements very slowly to see how you react.
The other comment that I have is that iodine may be something worth looking into for thyroid issues.
It's really awful to hear that no one helped you. I'm sorry you had to go through that.
If it was me, I'd probably avoid the anti-anxiety meds but we all have to decide for ourselves. Meditation helps me. It's easy to do with CDs from the Monroe Institute or by Dr. Jeffrey Thompson.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I need to put my 2 cents in regarding Armour and you "attack" You really need to address your adrenals.
I don't care what anyone says, but I know, for a fact, that if your adrenals are not functioning appropriately and you are having adrenaline type symptoms...
You are not able to utilize the Armor in the right way. Please get the Stop the Thyroid Madness book and read it cover to cover.
Check your adrenals by blood or saliva, there's a chance that you may need some cortef/ or hydrocortisone..
Posts: 151 | From south east | Registered: May 2010
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lululymemom
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posted
I would agree with mookie, if you are having bouts of high blood pressure accompanied by severe headaches, it could be the adrenals. Even something called a pheocromocytoma. Which can be treated with surgery.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Speaking of the devil I had an attack of anxiety in the middle of the night leaving me sleepless, and then this afternoon a repeat of the vegas nerve irritation.
A quick stop at the drug store for some antacid fixed me up. My first attack which was diagnosed by the doctor as a heart attack cost me over $12,000! Yes, you can think you are dying and when you find out you are just fine but deeply in debt for nothing, you are ready to croak anyway.
The irritation of the vegas nerve causes your heart to race, pain in the TMJ joints which can radiate into your teeth or ears and acid reflux. Mepron can cause it and it also causes anxiety.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Very interesting feedback everyone. I just have no idea what's going on. The vagus nerve makes a lot of sense.
I have had an adrenal 4 reading saliva test. I was a tiny bit low at one point, but nothing severe. All 24 urine hr cortisol tests are pretty good (had 3-4 in last 2 years). All AM and PM cortisol blood readings perfect mid-normal.
I do not have severe headaches Lululymemom. Just bad head pressure all the time.
I really should work on meditation Sparkle7. I need something like that, but it may not be enough to stop these type of things. It never hurts to try.
I agree Derek I need them at times. I'm happy to have a few in my back pocket now. I think something more is going on than anxiety based on how I've felt now for 36+ hours. I don't like the way I've been.
Earlier this morning, I was getting very shaky again. I tried to do a tiny bit of snowblowing and was OK for a few minutes. Then out of nowhere, it felt like something took my breath away and I had to stop ASAP. Very weak, arms got heavy, lightheaded. I got inside and laid down. I don't usually have this severe fatigue.
My heart feels like it's pounding a bit less after I've been off the Armour now for 24+ hours. I'm concerned because I've just felt really, really off-balance today. I tried vacuuming an hour ago and my equilibrium was so off I had to stop.
I don't know what happened. I hope the GSE didn't cause major damage to me. I hope it's temporary. I was getting very bad head pressure too on my right side. My ears have been fluttering constantly. Could the GSE have broken open Lyme cysts and caused havoc?
It seems unlikely as I took 1,500 mg of Flagyl for 10 days and didn't have much issues.
I feel pretty debilitated being so off-balance. I need to figure this out.
Nefferdun, I remember your post about the hospital trip. That is so horrible it cost so much. It's a gut-wrenching situation to not know if you're going to die and have to be put into financial dire over that decision. It's not right.
I wonder if Malarone causes me toxicity at some point. My ALT was slightly elevated at 53, but I've been higher than that w/o issue before. My AST was perfectly normal.
Guessing, guessing, and more guessing. Maybe I'll collapse and get taken more seriously and get an answer. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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nefferdun
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posted
I hope you get over this and feel better. The vegas nerve irritation caused pressure and my ears to hurt today. It might be part of your problem. It could be the GSE was the straw the broke the camels back - just set things off.
For me, the irritation was caused the first time from eating nuts on the way home from the store. Today I did not have enough breakfast and I doubled the dose of Mepron (don't ask me why). Maybe the GSE was too acidic.
When you think of indigestion it seems insignificant but it can mimic a heart attack when the vegas nerve is involved. That nerve runs from your head starting on either side of TMJ joints with branches radiating into your teeth and then going into your chest cavity where it control the acid going into your stomach and your heart rate.
The sudden weakness, breathlessness and loss of balance sounds like babesia -hopefully a herx.
I take Armour thyroid with Mepron with no problems. I wonder if the GSE is interacting with Malarone.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sparkle7
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posted
I agree that the root of your anxiety may be physical. I have had it happen to me. Could be a drug or supplement reaction or some other physical issue.
Don't underestmate the power of some "natural" supplements. Some people can die from an allergic peanut or walnut reaction.
I think the effects of meditation are cumulative. If you are having a physical reaction that is causing anxiety - sometimes, being able to "watch your mind" can be an effective way to reduce the negative reaction.
It may not be for everyone, though. I know drugs are needed sometimes. It may take a few days to detox any negative drug/supplement effects you may have right now. Give it some time.
I hope you feel better soon.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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jackie51
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I hope you're better soon. That is scary. We lead scary lives, don't we? We'll all get better though, that is my hope.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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tick battler
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posted
Sorry you are having such issues - that is very scary.
Just my opinion, but I think you have a very, very bad case of babesia. AND I think you are herxing on the GSE. I know you don't really believe me about it killing babesia, but I would bet a lot of $$$$ that is exactly what it is doing.
It's probably good you have stopped the thyroid med...so now that variable is not there. I think you should perhaps go down one drop on the GSE until you feel a bit better, then slowly try to work up, without adding anything new to your protocol so you can see if any reaction comes from the GSE.
Which coinfection do your symptoms sound like to you: chills, anxiety, shortness of breath, extreme fatigue, dizziness, weakness, jaw pain, head pressure. Sounds like classic babesia to me. Anyone else agree?
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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jackie51
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posted
You don't want to tank and end up in the hospital. Please be careful.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I am so sorry for you. I think I just hate the way "panic attacks" are viewed by some people. Like it's some kind of character weakness that you have control of.
I never had anything even resembling a panic attack, ever in my life. Then I started Bart treatment. These panic attack things are SO UNDERRATED. You really do feel like you might die, and I think that that's what your body is probably thinking might happen.
It is so much more than some emotional thing. After experiencing it, I have an enormous amount of compassion and empathy for anyone who suffers like that. I had something mild while driving one time...horrible.
I also had the blood pressure issues, too. I really hope you're feeling better soon. It's hard because if you're killing bugs, you don't want to stop. Like apljack says though, you don't want to end up in the ER. Hugs to you.
Posts: 246 | From south florida | Registered: Mar 2010
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seekhelp
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Member # 15067
posted
I'm still kicking today, but honestly am very concerned. I went to bed last night and my legs were so heavy I felt like I could barely stand. My arms feel weak too.
I woke up this morning and really felt weak. Every time I do any activity, even leaning over to pick something up, I feel out of breath somewhat. I have some tingling in my arms/legs as well at times. It wasn't that bad before this episode I had (the supposed panic attack).
Is there even a slim chance once could have a minor heart issue/attack and it not shown on the EKG 8-10 hours later at the doc's office? I don't have any speech slurring or numbness. I just don't feel myself even though that normally isn't great.
I continue to get some pressure in my upper left abdomen, but it's not super bad and not painful.
My blood pressure/pulse hasn't been that bad when taking it here. Not great, but nothing insane...like 140/90, pulse = low 80s, low 90s at highest.
Tick battler, I'm not saying GSE can't attack Babesia. I'm sorry if I came across like that. I'm just saying I have never heard any LLMD (I see Dr H in NY) claim this. it's obviously got very broad spectrum qualities so it's certainly possible. I'm not going to argue for a second that my symptoms aren't Babesia-like in every way!
Yes, panic attacks are frightening. I too sympathize for anyone who has them.
My biggest question is how do I know I didn't do major damage to myself that day? Any sure ways of knowing? I would call my LLMD, but what are they going to do 700+ miles away? I have stopped the meds for a few days to fiture out what's happening. I don't want to be in the hospital.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sparkle7
Frequent Contributor (5K+ posts)
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posted
I'm not sure what caused your reactions but killing a parasite can cause awful side effects - even anxiety.
Babesia is a parasite (protazoa)...
I know Dr. H is very well respected but they give us this (what I call) "do-it-yourself chemotherapy". We never know how all these drugs & supplements will react in our particular body. I was really shocked at this when I got my first protocols.
My mother had cancer & went to Sloan-Kettering Hospital back in the 1970s... To me, what we do to self-treat, looks alot like chemotherapy where people had to be in the hospital & monitored for - back in the day.
I don't know how some of these doctors expect us to do these protocols on our own. It's just the way it is these days... Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
If it was me, I'd hold off on GSE and definitely drop the armour, like you did, and wait until you see the cardiologist and let him do a full workup.
And you may feel a little weird from dropping the armour too (depending on how long you took it). Your thyroid was getting T4/T3 (and possibly too much of it) and now it's not getting any at all. I know minor modifications in thyroid meds can make people feel weird (simply changing brands of T4/Synthroid has done that to me) -- you feel slightly off for a while.
It's also possible that the grapefruit could have interfered with whatever medications/supplements you were taking (common side effect from grapefruit is increased absorption of some meds).
As for heart issues, it is possible you had some heart problem, but I wouldn't think it'd necessarily be a heart attack. You've had an echo done, right? Any valve issues? How was you ejection fraction?
And I'll assume you have tried antacids, etc, for the abdomen, yet no relief?
Posts: 584 | From NY | Registered: Feb 2009
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jackie51
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Member # 14233
posted
Left side of stomach is usually spleen but it's not unheard of for some to have their appendix on this side. If it gets really painful, take it seriously. The spleen tends to enlarge when it is fighting infection, at least mine does.
Top of stomach, under rib is bart isn't it?
You'll get through this, but please be careful.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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