char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
My daughter, Alexis here, recieved the diagnosis of severe POTS yesterday.
She is starting treatment for it immediately and this saintly pediatric cardiologist is working closely with our LLMD.
It is a good thing to get this sorted out and it appears that many symptoms she has been plagued with will be alleviated. So this is good news overall. It is this drs experience that some lyme patients have POTS which makes the lyme and co. seem to be worse than it is.
The dr was encouraging that med will help and this will not be lifelong condition. Will help insomnia, brain fog, fatigue, perhaps thyroid trouble and more which will allowing weaning back on all these pills she has to take. (Some of you may recall her protests here regarding adding one recently. We did take her off it soon after as her concerns were very legitimate)
"It so happens" that the cardiologist's son had this and is now back in college. Amazing the resources finally coming our aid and we are grateful.
A thing is that is hard and painful to digest the alarming test results. The numbers were overwhelmingly conclusive. Stress test heart rate began at 113 and rose to 180 in 2 minutes. They were very thorough and had many similar results to report.
I feel bad as a mom that we didn't get this diagnosed sooner as she has been stuck in bed most of the time or up and out with heroic effort and discomfort. Been going on for 2yrs at least although it was not so evident and troubling when she was completely laid out with herxing.
We are grieving some for the time lost and also need prayers for patience waiting for this to resolve.
One more thing-she is supposed to get in swimming pool 3x a wk and get in bathtub which evidently causes some helpful vasoconstriction. She does feel better in a pool-but she is bothered by the sensation of getting wet. Mom is in need of energy to make it all happen.
Thanks, Char
Posts: 1230 | From US | Registered: Nov 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
char,
OMG. what you and your daughter have been through. i think the most difficult thing in the world is to have a sick child you are trying to nurse to health. it hurts so much to see them suffer. it feels like it is happening to you.
prayers for you and your daughter and all the suffering little ones.
((((hugs))))
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
Sorry to hear all this, but VERY glad she will be getting some relief very soon!
I hope she won't have to be on the meds "forever?" Do you know if she has to take it from now on?
I'm hoping that fixing the lyme will also fix the POTS...at least to some extent?
Is she going to take Florinef?
Hugs to you and yours!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Good luck Char..I hope this does the trick..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Thanks for the replies.
Lymetoo- The dr feels that the lyme caused this disorder and with treatment it will resolve so she won't need to take the medication for rest of life. Basically lots of hope and good news just emotionally charged.
Good news I did not include is that the heart itself is according to the tests is in excellant condition.
Posts: 1230 | From US | Registered: Nov 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hugs, prayers and strength to you, Char.
It really is good news even if completely overwhelming. It's good to learn that things are going to change and for the better.
Many hugs to you and yours!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Trueblue-
Thank you for the phrase "good news even if it is completely overwhelming" you put into words for me.
Actually and thankfully, she is perking up after 3 doses of her new medicine!
Posts: 1230 | From US | Registered: Nov 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good to see they can address this situation.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
you're welcome? i'm not generally good with words so I musta got lucky.
"perking up after 3 doses"
those are very good words to see!
I hope this makes a big difference. Hang in there and take care.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I will keep your family in my prayers. I had POTS in 2004 and know how debilatating it can be.
The POTS resovled quickly with treatment. Within a few months my heart rate and blood pressure normalized. So I remain optimistic about Alexis.
And try not to be self critical about obtaining the diagnosis now. It is unfortunate that most doctors are not knowledable about autonomic dysfunction. There is only center in Boston that did the tilt table testing, and it was after five miserable years that I found a doctor who knew about the center.
Once the POTS resolved, my body started healing much more rapidly. I am optimistic that this is also good but overwhelming news for your and your daughter.
Posts: 628 | From the south | Registered: Dec 2005
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bettyg
Unregistered
posted
Char, praying for you/daughter/family! Thank you God for getting a correct dx after this length of time.
Char, concentrate on what she can become now that she WILL BE GETTING WELL! The past is bured. Bettyg
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Cobweb
Unregistered
posted
If I knew what POTS was I could be a little more specific-but all I can think of is:
Serenity is not freedom from the storm But Peace amidst the storm.
Somebody packed my dictionary-now that's a problem! HA! From what I've read- you just came through a move-so see you are leading the way for me. Any tips?
Would a pet guinea pig cheer her up? I could air mail one( or two) quick with a small bale of fresh timothy hay.
Alexis seems like a great kid, a tough kid, sorry she is going through so much. Peace and Healing Hugs to all of you, Love, Carol
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
This thread is really helping me!
Serenity- yes
Tincup- Much better. Guess past adversity prepares one. I am having strange dreams under the stress. Last night Groovey 2 was in one!
Cobweb- Advice for move; ask friends to help pack. Make good lists of what you need to put in "first thing" boxes you take in car with you. We made out great other than losing all my son's long pants.
Thank you kindly for the guinea pig offer. Can you really ship guinea pigs? We will take one if you can send someone along to clean the cage!
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Char,
I don't have POTS, but I was diagnosed with peripheral autonomic neuropathy. My doctor treating me believes it is caused by the Lyme, but more directly by an amino acid deficiency caused by the Lyme.
He tested my amino acids which were extremely low. He has me on many supplements including essential amino acids, glutathione, taurine, lots of B-12, folic acid, lots of Vitamin C and magnesium.
That is basically his treatment. I think he is staying away from meds since I'm on so many for the Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Oh dear Char,
I'm sorry to hear of Alexis' troubles.
What age group is she in? I don't need to know specifically unless you want to share it.
<<>>
I can identify with this. When my hands get wet I "get the sensation of a cool breeze running through my hair". Do you remember the old commercials for peppermint patties?
Really, my hands feel like I've rubbed Ben-Gay or vapor rub on them. Like they're cool & ??? I have the sensation that air is blowing on them too. Very weird! No where else on my body.
This started when I was on doxycycline. I still have the problem even though I've been off it since July. I am on minocycline now, so it may be prolonged due to this new tetracycline drug.
I spent 4 hours in the cardiologist's office today with my dd. She was diagnosed with LD Monday. Thank God she has no detected abnormalities in her heart. She didn't have the MVP that the FP thought she had, but it can be an intermittant problem.
Dd had an EKG & echocardiogram...basically a fancy ultrasound. She's complained all day that the echo was very painful...too much pressure for my dd. She was in terrible pain all day today...at 8 out of 10 on the pain scale. Maybe her pain level just made her more sensitive & less able to cope with minor pain & irritations.
I'm so sorry you're both going through this. Tell Alexis I'm praying for her. I'm praying for you too Char.
Hugs, Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Nancy- sent pm
Posts: 1230 | From US | Registered: Nov 2005
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There was one simple thing I did that helped my dysautonmia and tremendoulsy. Salting my water. Once I started salting water, I couldn't drink plain water. My body craved the salt. Ever now I prefer salted water to plain water.
Warm water with salt (about 1/2 tsp per cup) and lemon is the perfect drink. I would do this at least four times a day, usually more often and sometime a whole tsp in water. My LLMD was did not want me to use too much salt as I needed some pure water to flush out the toxins, and too much salt he thought would be hard on my kidneys.
One of the treatments for POTS I was told by the neurologist who diagnosed me is salt tablets, in high doses about 3gm-9gm a day.
Florinef, which your daughter may be on, has a similar action in helping the body hold onto salt.
If you decide to try this for your daughter, do talk to your doctor especially if she is taking florinef.
Posts: 628 | From the south | Registered: Dec 2005
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posted
If the doctor wasn't there to tell me (us) that I had severe POTS I would not have believed it. I'm fifteen years old and I am not the type who faints or falls over. But the serious look on his face; it made me want to laugh which is usually what I do in the face of danger... or you know, something to stack right up on top of my Lyme.
Mum is right the meds are defintely perking me up mentally but it's been a really rough patch. I hardly get off the couch anymore and I'm usually somewhere online (here) typing. Which is why I haven't invaded my own thread sooner. We (both) need the prayers badly. I know everybody in the family has got their own troubles.
The bath tub thing was a disaster. I ended up washing my hair (a plus) but I don't think I'm going to be taken anywhere within six feet of lukewarm water. I get dizzy just washing my hands in warm water! Please tell me that's not normal.
Cobweb! I would love a guinea pig but mum's right I wouldn't drag my carcass about to clean its cage enough. And our cats would harass it or something. Nonetheless simply the thought of opening up a package of guinea pigs was enough to cheer up my day. (Will be working on a way around these things so I can still get a guinea pig. LOL.)
Posts: 28 | From North Carolina | Registered: Jul 2006
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Cobweb
Unregistered
posted
Alexis-here's the best I could do-enjoy!
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Dear Father lay your healing hand on this child of yours . Make her stronger each and every day. Give the Drs the knowledge to do what is best for he. Give her family the patience to deal with the road ahead of them. Lift them up in there time of despair and worry give the hope and joy for the things you give the everyday. Thank you Father for your grace and mercy Amen My prays are with you. Beca
Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006
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