Topic: Updating Title..Many Medical Problems lately; THANK YOU FOR HELP!
Tracy9
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posted
Just wondering what the reason is for this...anyone know?
I am recovering (I hope, it's darned slow) from meningitis and one of the worst things is that if I stand up and take even a few steps my heart feels like it is pounding out my chest and I feel like I am having a heart attack.
I have never had this feeling before. I am on strict bed rest and believe me, I am following it; not much choice as I am completely fatigued and asleep most of the time. However one does have to go to the bathroom, and about 2-3 times a day I go downstairs for food, water, and to lock up the house at night.
When I do go downstairs, I go very slowly, lean against the wall, and hold the railing. My heart just pounds and I have to bend over and stay that way for several minutes until it subsides. This also happens even if I take a few steps but obviously it's worse when I go up or down stairs.
I'm just wondering what is causing it; am I dehydrated (trying to drink as much as I can but sleeping most of the time), is it my blood pressure, what is it?
Any ideas? It is a very scary feeling, but most of all VERY painful and uncomfortable. I haven't croaked yet and I've been out of the hospital for a week so I don't think it's going to kill me, but I would like to know if there is something I can do (besides a bedpan) to avoid it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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dmc
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Oh Tracy, definately contact a doctor. Sending positive thoughts & prayers that you will be okay and that " this too shall pass".
Posts: 2675 | From ct, usa | Registered: Jan 2004
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glm1111
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posted
Your electrolytes could be off. Have them checked ASAP
-------------------- 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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Tracy9
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OK, thanks; I will call the neurologist tomorrow. I have my ferritin checked regularly, it had been down to 8 about 2 years ago and recently I was a bit anemic. I have been taking iron.
Visiting nurse comes tomorrow too; maybe I'll let her call the doc.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Neurologist??? Yes, tell the nurse and have her call the dr!
Really could be the electrolytes.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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IckyTicky
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I agree about calling the doctor to make sure it's nothing serious. But I also wanted to say that I had that for 3 years, I couldn't even turn over in bed without it causing my heart to pound and accelerate. 2 yrs before finding out I had lyme, and then it finally stopped after about a yr of treatment. Cardiologists and all manner of tests couldn't find a cause.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Tracy9
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Thanks, the visiting nurse is here now and the doctors are just giving her the runaround. Very frustrating.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Pinelady
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posted
I would ck electrolytes too. Maybe see if you get a
reaction off a pinch of salt. It worked for my
bounding heart when I first started treatment.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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randibear
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posted
would one of those sports drinks like gatoraide help with this?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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djf2005
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posted
If it is electrolytes E-lyte (bodybio.com) has a good liquid electolyte product.
Biopure has one too.
Hope it gets better soon Tracy, I get this too, seemingly when I take things targeted for bartonella.
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Geneal
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posted
Dysautonomia issues maybe?
Just a different thought.
Prayers to you and getting well.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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IckyTicky
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posted
You can also buy coconut water for better hydration. Maybe that was part of my problem back then. I am ALWAYS dehydrated no matter how much water i drink daily, even with some sea salt in it. It doesn't get to my tissues.. only the core.
Seems to be a common problem with LD. But with me, it lasted 3 years. Blood tests never showed that I was dehydrated.
Hope the Dr's stop giving you the runaround.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Tracy9
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Mine just started ever since I was discharged with the meningitis. It seems to just go along with the weakness....even walking a few steps results in this heart pounding and having to bend over to breathe and make it stop.
I've never had it before. Primary Doc's office called Visiting Nurse back and told her to send me to ER. I cannot believe I have to go to the ER AGAIN. I just had my PCA pack up my little bag "just in case" am I am trying to force myself out of my comfy bed.
They are concerned about Pericarditis. Ugh. I don't want to go. Story of my life. If I get admitted again, I am going to scream.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
We're here for you! Best to get it checked out!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tracy9
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posted
Thanks, been at ER now for four hours. Had a chest xray and bloodwork, my D Dimer came back high so I have to have a chest CT with contrast to check for pulmonary embolism.
It's come back high before and never have I had a PE, so I'm not worried. I swear I will die of radiation induced cancer before anything else. I get these two tests like every week it seems.
Other option is pericarditis. I asked him if it might just be heart pounding from exertion because I am so weak from the meningitis....he said, "Tracy, you are making excuses."
Hmmmppfff.
Off to the CT scan soon. Dammit. More contrast. Just had this test a couple weeks ago when I had bronchitis. Oh, and they injected me with steroids too. Gotta love the ER.
Will update when I have some answers. Thanks, as always, for being there!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Admitted to hospital on Telemetry. Something is wrong with my heart and they can't find out what. CT scan, chest xray negative. Having a bunch of tests tomorrow.....echocardiogram, stress test, repeat bloodwork and EKG.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Or maybe nothing. Don't mean to be dramatic. Hopefully nothing.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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The doctor just came to see me and said I was admitted to make sure I did not have a heart attack, or that I am not in the process of having a heart attack as they can come on slowly. Guess he doesn't mince words. They will run more tests today....and if all is well then I can be discharged.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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gwb
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posted
Sorry for all you've been through Tracy. You're in my prayers. Please keep us posted.
posted
So sorry for all you are going through. I know how scary the pounding heart feels, and what it does to your energy level. My Dr. has never found anything wrong with my heart and just gives the same answer I get for everything "we don't know a lot about this disease". Glad you found drs.to dig deeper to keep you safe.
Sending Hope your way
-------------------- "Why must we be wealthy to be healthy?" Posts: 22 | From maine | Registered: Jan 2010
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feelfit
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posted
Good Luck Tracy. the heart stuff is always a bummer. I have elevated D-Dimer and about everything else that you have spoken of and my heart is normal...
No pulmonary embolism etc....
Always better to get it checked out!
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I'm sorry about your heart problems. Haven't had them myself so I have no advice or insight about that. Sounds really scary.
I have had mobility problems before and had to lie in bed for 2 months and be home alone (not from Lyme).
These are just some practical ideas for anybody who has to spend most of their time in bed and has trouble getting around, and doesn't have a caretaker on call.
If you are going to have to suffer with this kind of problem for a while or if it keeps coming back unexpectedly to bother you, minimize the amount of walking you have to do.
Get a portable toilet like you can use for camping, and keep it by your bed. There are some you can put water in for flushing and a chemical so it won't smell, and you just empty it into the regular toilet.
Get the chemical that is septic safe. (Well, it beats an antique chamber pot or a plastic bedpan.)
This assumes you can get down and up off a low thing. If not, set it on top of something solid, like concrete blocks or a heavy stepstool, and keep a walker or piece of furniture nearby to help pull yourself up and down.
Keep some hand sanitizer within reach.
Bring up food and water for multiple meals in a backpack, so your hands are free for railings and balance. Don't make more than one trip up and down the steps in a day.
Use a soft cooler and frozen ice pack if you need to keep it cold. Put a microwave in your room if you need to reheat it. Keep some garbage sacks there for food trash.
If you have a visiting nurse, friend or relative who comes over, leave your food and water at the foot of the stairs and let them carry it up for you. They could also empty your portable toilet and carry the trash down.
If you can't exercise at all, even to take a few steps (or even if you can, but you spend most of your time in bed), you can try doing yoga stretches and isometric exercises while lying in bed.
Do them as gently and slowly as you can, maybe only one stretch or just tightening and loosening one muscle, and see what you can do without setting off your heart.
If you just move the muscles, it helps them hang onto what muscle tone they already have.
This may not be part of your issue, but I remember after being in bed 2 months, the first time I climbed 6 steps. (I had had someone to bring me food and water and help me to the bathroom some of the time.)
It took me about 15 minutes, dragging myself up one agonizing step at a time, and then I collapsed on a couch, gasping with my heart pounding, and feeling as though someone had punched me in the stomach and knocked all the air out of me.
Lucky for me, that was from being deconditioned, and it was never quite that bad again and got steadily better, since I was able to do exercise and physical therapy with no trouble.
I did joke about getting all the exhilaration of climbing Mt. Everest without oxygen, without the annoying risks of freezing to death.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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randibear
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i am so sorry to hear this tracy. i wish there was something i could do.
are the boys ok, is there anything i can do for you?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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linky123
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Praying for you and your family. Take care and God bless.
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posted
Hope you get some answers soon!! Hang in there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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Tracy,
Good Grief, haven't you been through enough already?? I would say so.
I just had very similar heart symptoms for the last 8 days or so, REALLY distressing. I kept hoping it would go away, putting off going to the ER, trying to get a referral to a cardiologist who knew about Lyme (to no avail). Last night I finally went to the ER. I should have gone in the beginning. I have Pericarditis from having had a severe bronchitis recently, plus from the Lyme. And I need to follow up with a cardiologist.
I hope that it is something not too serious for you, also. Is your husband still away? If so, that is too hard! I hope they get to the bottom of it soon, and that you get relief soon. Sending love and prayers.
Posts: 3771 | From around | Registered: Mar 2008
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posted
babesia relapse?
Posts: 983 | From The sky | Registered: Feb 2005
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seekhelp
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Where did your husband go? Can't he come back given the circumstances? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Pinelady
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posted
Claforan seems to be the drug of choice for heart infection, just in case. They should also know that temporary pace makers can save many lives in the events from heart infection.
1Recommendations are based on limited data and should be considered tentative. The duration of treatment is not well established for any indication. Relapse has occurred with all of these regimens; patients who relapse may need a second course of treatment. There is no evidence, however, that either repeated or prolonged treatment benefits subjective symptoms attributed to Lyme disease. 2Should not exceed adult dosage. 3Neither doxycycline nor any other tetracycline should be used for children under the age of 8 or for pregnant or lactating women.
4A temporary pacemaker may be necessary.
5In late disease, the response to treatment may be delayed for several weeks or months.
Abbreviations: bid, twice daily; IV, intravenously; PO, by mouth; qid, four times daily; tid, three times daily. From The Medical Letter, Vol. 39, 1997 http://www.travmed.com/health_guide/ch11.htm
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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map1131
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Tracy, wow you are really in a rough period. I hope things lighten up soon. Today!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Tracy9
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Thanks everyone,
They took me off Telemetry last night and it was clear discharge was not in the plan. I was a little confused.
This morning the nurse practitioner came in and told me my heart is surrounded by fluid, picked up on the echocardiogram. The cardiologist will be in later to talk to me.
Rumigirl, I had severe bronchitis for three weeks that ended just about 2 weeks ago, along with a sinus infection, and am still recovering from meningitis. I am hoping it is just pericarditis.
The other options are all scary. The nurse practitioner specifically called it pericardial effusion.
I'm relieved they found the problem but now scared. I'm scared because I've had chest pain for about a year, and been to the ER several times for it but never had an echo done. It's just been severe since I had the meningitis. What if this is not something new, and isn't pericarditis, and is something bad like congestive heart failure?
Anyway, I suppose I won't be getting out right away. I am concerned about my boys. Ryan is 20, they are old enough to be home alone, and my PCAs are coming and going, but they are not used to being without Mom or Dad.
Ryan is very scared and he doesn't even know about this. I wish I was just there to comfort them. They just don't have any support.
No, Blake is not going to come home. He is staying in California. I have been hospitalized three times since he left and he really doesn't seem to be all that concerned. He has no intention of returning home until his SSDI hearing on April 28, or a little before to get his ducks in a row. We are on our own now.
I'd like to find a roommate ultimately. I have a huge house and would like to not be alone with the kids. They just feel better with someone else there. I can't imagine how insecure they are feeling right now. And again, they have no idea about this.
I wish my family wasn't so lame and someone would go spend some time with them or take them out to laser tag or something to get their mind off of this. OR to fast food....this is rough on them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Shoot. I hope you find out something more about the fluid very soon, so you will at least know what you are dealing with.
For what it's worth, if you've got severe problems I'd sue the hospital for not doing an echo a long time ago. That is ridiculous.
Hugs to you and your family. I will pray for you all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
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posted
sweetie, i'm going to walmart, probably make it tomorrow.
send me what restaurants are around there and i'll make sure they get gift cards, ok?
we have chili's, mickey d's, the usual, kentucky fried, quizno's, subs. just let me know what they want.
also do they need anything from walmart? ours has a gas station and you can use a gift card for that.
you just let me know and i'll help out with the boys. some movies might be nice too or games.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Pinelady
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posted
My husband had that severe from Hypothyroid.
I hope that is what it is. Easy fix, but takes a
long time to ramp up and not excite the heart.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Rumigirl
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Tracy,
Oh no!! That is all too much! To have your husband have left you during all this, too?!!? That's beyond endurance! What about your poor kids---he's not thinking about them, it sounds like.
I can't believe it either that they never did an echo before. Good grief! I hope that it turns out to be not so serious.
Pinelady, when you said that your husband had that from hypothyroid, do you mean pericardial effusion? Because I think what I've been going through has to do with hypothyroid, too.
I'm on thyroid meds, but I think they need to be adjusted, and that is part of what is going on for me. I need to follow up with a cardiologist and with my LLMD about my thyroid meds and other meds. Complicated!
Oh, Tracy, I wish we could all literally gather around you and help out. This is such an extraordinary time of difficulty. It's hard to understand a husband being so cold-hearted. Our love and prayers to all of you.
Posts: 3771 | From around | Registered: Mar 2008
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canefan17
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I had these exact symptoms until I addressed my adrenal fatigue.
My heart would pound through my chest from doing anything.
Light-headed a lot.
My adrenals were shot and this is a very common symptom.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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The silver lining is that you should get IV abx out of this for at least more than a month, which will help beat back your Lyme.
They don't mess around with the heart...pericardial effusion is not something they will not give you orals for, unless they want to lose their licence.
I hope you keep us updated.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Tracy9
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Randibear, you are so sweet. Merrygirl posted something on Lymefriends after talking me into it because boy, if those kids ever needed a pick me up, now is the time. I would love to see a smile on thier faces. I hate that they are home alone while I am in the hospital, scared and with no emotional support.
I hate to ask, but here goes;
Ryan:
Walmart Shell gas Dunkin donuts McDonalds Burger King Wendys Red Robin Applebees Showcase Cinemas Ebay Sears Friendly's Mobil gas GameStop Grocery store - Big Y, Stop N Shop, Price Chopper, Shaw's
Cody:
Walmart McDonalds Burger King Wendys Legoshop.com Ebay Applebees Showcase Cinemas Ebay GameStop Grocery store - Big Y, Stop N Shop, Price Chopper, Shaw's
And I love to get Get well cards....they brighten up my day so much and I am on a misson to fill my slider doors with them all taped up!
You can pm MerryGirl for our address.
I hope you all know I would be the first in line to help ANYONE else in need too. I hate to be the one needing the help. This has been a lousy year so far.
Who would think I'd get Bronchitis, Sinus infection, IVIG with complications, meningitis, then pericarditis all in a row with not a single day in between, plus get separated and have my husband move to California, all in such a short time?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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I saw the Cardiologist and I have Pericarditis. The amount of fluid around my heart is not that bad. This is the best possible diagnosis.
In addition to the fluid around my heart my EKG worsened from day 1 of admission to day 2, consistent with diagnosis, doc said.
I may even be discharged today or tomorrow. The treatment will be anti inflammatories or steroids. My Lyme load is way down so I am not afraid of the steroids and they are helpful with the autoimmune disease, my main diagnosis now.
It will take 1-2 weeks to recover. Bear in mind I still have meningitis. The meningitis likely caused this; the infection moved into my heart. It does not appear they treat at all with antibiotics; I guess it is viral.
I just want to get home to my boys. I hate them being alone and afraid, even though they are troopers and are doing great.
Next step is to get to the LLD so I can find out when the heck I can get back to my do my second IVIG treatment.
On a frustrating note, I let one of PCAs use my car while I am inpatient and she decided to also use my handicapped tag and the police confiscated it. I have to go down to her college campus to get it back. Like that is going to happen. I better be able to talk them into returning it over the phone. I am in no condition to travel 1/2 hour to her college to reclaim my handicapped tag.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Pinelady
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So Sorry Tracy. It has to get better.
Yes Rumigirl. He had severe pericardial effusion
with a TSH of an unheard of 129. When it was
finally found they had to start him out with baby
doses and ramp up to not excite things.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
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Getting discharged tonight; very happy. So are my kids. They are coming to get me in about an hour, hopefully my discharge paperwork will be ready by then!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Good news that you are coming home. Wow you poor thing you have had a hard time lately for sure! I am sure the boys will be so excited to see you home. I cannot believe that your hubby has left on top of this all. Wasn't he sick with TBD as well?
Best well wishes
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randibear
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oh tracy, i wish i could just get on a plane and come and help ya!
hmmmm. look for a package from ups, probably monday or tuesday.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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Yeah!!! Thank God that it is Pericarditis, and not something worse. And that you are going home.
The ER told me to take anti-inflammatories for it, and that has helped a lot! It's amazing that such a simple remedy can help so much with such an alarming condition. I'm not totally out of the woods yet though.
Take really good care. Your boys will be so happy to have you home.
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seekhelp
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I'm glad you're going home Tracy. Good luck. I hope the treatment helps. BUT, please take your address off the forum! Not a good idea as many have said oh so many times.
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Tracy9
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Seekhelp, ok, did it.
Randibear, you are so sweet but please do not overextend yourself! I haven't even gotten you a thank you note from the last time and I feel awful!
Stacy, yes, my husband has had Lyme, Bart, Babs, and RMSF for 11 years. He has been intermittently compliant with treatment under much duress from me.
Most recently, in the last two years, after losing his umpteenth executive position for not being able to "connect the dots," three years ago, I finally convinced him to embrace treatment full on.
He did so for two years, often begrudgingly, not always compliantly. He did finish 7 months of Rocephin but has not complied with the oral regimen he is supposed to be on now.
He is difficult to be around as he is often depressed, angry, and constantly complaining...life sucks, this isn't how life was supposed to be, no one can do anything right, yet he won't do anything to help himself and that I cannot tolerate, as I am running myself ragged to get myself, my kids, and him better.
He wanted to go visit his mother in California. What could be nicer in Jan/Feb than an all expenses paid vacation to one of the nicest, most ritzy parts of sunny California on the beach.
I begged him NOT to go when I was starting my first dose of IVIG; that were too many possible complications, etc.
No matter what I said, he booked a flight on the morning of the last day of my IVIG. He took our oldest son with him so I was left alone with our 14 year old, whom I am too sick to get up and off to school in the mornings.
I'd told him in the past, if he ever left me that sick again to go visit his mother, not to bother coming back.
This is the sickest he has ever left me, and I told him clearly several times if he followed through with leaving me like this, alone with a 14 year old, not to come back. He chose to go anyway.
I'd had complications from the IVIG all week long. There was every sign he shouldn't go. On the last day he left, I had to be admitted to the hospital to be transfused, leaving me to scramble to find someone to get my son off the bus and stay with him until about 9 pm when I was discharged.
The next day I came down with meningitis, a known possible complication of IVIG and one I had told him I was afraid of possibly getting, and suffered for four days miserably before finally succumbing to the ER and then having to be admitted for four days. I had to scramble for child care as my older son was still in California.
I got home and was still horribly ill, with the heart issues starting immediately, and in severe pain. Finally after about ten days, the visiting nurse came and called my Primary Care doc who sent me to the ER, where I was again admitted for three days, getting discharged yesterday with the diagnosis of pericarditis.
So, although he fully expected to come home in a couple of weeks, I told him he was not going to. I know this is probably more than I should share on Lymenet and some people are going to write some nasty comments about it, but it is getting exhausting getting so many questions and I just want to clear it up. It is what it is, and I'm sure I'm not the only one who has gone through a similar situation.
I don't have any answers going forward, all I know is that I am relishing the peace in my house. No longer am I hearing on a daily basis things like ``I'm sick of having a sick wife,'' ``You've been in bed or two years'', ``this isn't what I signed up for,'' ``I want my fun wife back,'' ``I have to do everything around here,'' or listen to the yelling at the kids, etc.
Meanwhile all this happens in the midst of his Lyme brain or poor prioritizing or just pure selfishness, whatever it is...but he does what he wants to do and lets important things slide, like paying the bills, or getting groceries, or getting Cody to school, giving the kids their meds, getting Cody to bed, doctor's appts, doing homework, etc....all the things I'd consider priorities.
I am very fortunate in that I have a lot of services in the home. I have Personal Care Attendants to cook and clean. I have a twenty year old son who has totally stepped up to the plate and is getting his younger brother off to school and took great care of him while I was just in the hospital.
He is doing a lot around the house, without even being asked, doing all the errands, shopping, banking, in fact things his father was letting go.
My younger son is helping out too. We all love Blake, but there is nothing that can replace having a peaceful house and not having that feeling in your chest of when is the next verbal outburst going to happen, or what disaster is going to come next because something wasn't followed through on.
I almost lost Dr. J for my kids because right after he left, they called and the kids had missed 3 appts I didn't even know about. They had left numerous messages. I picked up the phone and there were well over 200 voice mails on it. I had been so sick, again these were things he was supposed to be taking care of.
It is so much easier to just do it yourself, I am finding, then to think someone else is doing it and then deal with a huge mess when you find out they aren't.
Right now no one had medical insurance because he never filled out the redetermination form. He left it on my bureau, and told me to do it, even though I asked him several times to please sit down on the bed with me and do it with me, as I am in no condition to get up and search for bank statements, 401ks, or whatever else they might need.
So let me clear up that my husband did not walk out on us....well, he did, but in his mind it was for a temporary break/vacation.
In my mind, you don't get to do that and leave your very sick wife behind to fend for herself. Where it goes from here, I don't know. I do know he will be home in mid to late March for his SSDI hearing for about 6-8 weeks to see doctors and stuff, but I plan for him to return to California after that.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Some people you just can't fix. But over all you
still sound like you have things to be thankful
for. Hang in there Scarlett, Tomorrow's another day.
Lots of Love sent your way.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Pinelady, thank you so much. I am very positive, I feel good emotionally, and whatever comes our way, I am determined to make it the best it can be!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I just wanted to say THANK YOU for the get well cards, they have made me soooo happy and they are so beautiful!!!
Also today we received a $40 gift card to Wendy's, anonymously, which I cannot say THANK YOU enough for!!! It is really our favorite fast food restaurant, by far, and the kids were overjoyed!
I cannot tell you how grateful we are. It is so awesome to know we can get a couple of dinners without worrying about anything, that everyone will enjoy and that will be a great treat!
That was so generous and kind, to whomever sent it, THANK YOU SO MUCH!!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Wow, hard to believe that since I started this thread I've had at least five more ER/hosp visits and now have blood clots in both arms, and have lost my PICC line.
I really thought I was at the end of the medical problems but I wasn't!!! I got a HUGE blood clot in my left arm from the heplock from when I was in the hospital with pericarditis; going from inner elbow almost to shoulder, and several small clots in PICC arm at the same time, oddly enough.
So there went my PICC line. I'm worried about how I'm going to get my IVIG. Now I'm on two Lovenox shots a day and 7.5 mg of Coumadin.
But, inside I feel a sense of "betterness" trying to get out and I think the one round of IVIG really helped me. It's hard to explain, but I think underneath all these collateral issues (as someone so well stated it, my side effects get side effects) the IVIG did some good, and soon I'm going to feel better.
I just need to figure out how they are going to get IVs in me...need to see a vascular surgeon as now I have blood clots in both arms, and may need a screen of some sort, maybe a chest port....I just want to get on with it already!!!
Anyway, thanks for the cards and Wendy's gift card again, I can't tell you how much this means.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Tracy, my gosh I can't believe how much you've been through! You are such a strong and amazing person. I'm really sorry about you and Blake, but it sounds like you are at peace with it and that's a good thing. My heart goes out to you and you are always in my prayers.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Can't you just get poked every time you need the IVIG? Seems like that would be better than undergoing surgery for a port, if you aren't doing any IV abx.
Good luck!!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hoos, I wouldn't mind that but the problems are both my arms have blood clots in them and they can't push the fluid past the clots, dislodging them.
Also, I basically have about nothing left to poke in the right arm, the veins are all trashed. The left arm is better but of course that is the arm where the HUGE clot is that goes elbow to shoulder.
The IVIG is five full days per month....I don't mind the pokes at all, or if they left a heplock in for five days. It's just that they can't infuse past the clots.
Lauren, thank you sweetie! We are all going through a lot, that's for sure...I just want to get back on the IVIG as I am holding out so much hope for it!!!!!
Oh also Hoos, I am supposed to be on IV abx....I just haven't been because I haven't been back to the doc who prescribes them and personally was thinking I'd hold off, but both my primary Lyme doc and the secondary one who gave me my PICC want me on IV abx. I was thinking the IVIG might be enough.
I need to get to these docs and see what they say and stop speculating. Need to wake up in time to make appts and get rides!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Okay, gotcha....hope you find a solution!!!! Good luck with your IVIG! (((hugs)))
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
As a temporary solution -- hubby has had IV's given in his feet before. It would depend on how large the needle is. This was a one-time stick in a doc's office -- did it 2 or 3 times I think.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
they had to do iv's in my mom's groin. sad to say, she was in a lot of pain with it.
i hope they get it all straightened out.
and tracy, dear, don't you ever worry about what you post here. i mean look at me, i talk about my home problems. hmm, course i did get one sort of rude private mail but hey they don't live my life either!!
so vent away girl...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tracy, I'm so glad to hear that you are home and doing better. I hope that you start to feel better soon too!
I was also going to tell you that they can place IV's in your feet if they have to. Sounds like that may be your best, safest option for now. You would have to alternate feet every other day for the 5 days of IVIG. Not fun but at least you could get your therapy done.
Take care, big hug Posts: 5237 | From here | Registered: Nov 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have an appointmenet with a vascular surgeon on Friday, I'm so glad they got me in very quickly!
He will assess the whole situation with the blood clots, if I need a filter to keep them from going into my heart, and if a chest port is indicated or what other suggestions he has.
So I am excited to have some answers very soon!!!
Once I get the venous access figured out, I can go see my LLD and see what he needs to adjust so I can get back to the IVIG in light of having gotten the side effects and meningitis last time.
Then I can also find out if he thinks I should still pursue the IV abx if I have a line put in, or if I should wait.
So excited to have things moving again! It's been impossible with one thing after another....I finally woke up in time to make one appt! Though I did go right back to sleep and slept all day.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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