posted
Hi there, really needing some advice. My daughter seems to have an extreme pain response happening.
She was supposed to get 3 days of IV fluid and some magnesium for POTS and unresolved headache (two weeks long).
IV nurse came and first IV inserted, could flush but not get blood. When this happened previously at ER she had LOTS of pain afterwards. Sure enough this happened again. Pain all the way up and down arm.
They put in 2nd arm. Same thing, nurse was convinced IV was in, but pain was so intense that after 2 hrs we had to bail. She just had inpatient IV for two days, so this is not something that always happens.
Last night she was still in pain and was saying it was a 9/10. Any guesses on cause? Help for it?
I am wondering if they are hitting nerves, but it seems extreme.
TIA for any thoughts/help/ideas
Posts: 62 | From VA | Registered: May 2016
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Just thinking out loud here: Wouldn't an IV of magnesium make POTS worse because of relaxation of vessels?
Could it be that her blood is thick and that is why there is no return on the IV?
If the fluid is running in for 2 hours it would be apparent it was not in the vein because after a very short while the arm would be filled with fluid and leaking...so the fluid must be going in...
Is it the solution in the IV that is culprit of the pain? (I could not tolerate the Vit C IV. They had to stop it and a one time IV antibiotics hurt my veins for weeks!)
If there is not any latex sensitivities drinking aloe might help cool down the veins. Look at anything that takes down inflammation that works for her.
What does the pain feel like?
Posts: 764 | From Northwest | Registered: Sep 2014
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posted
Thanks for helping think through it! It was the initial stick and blood draw that started it in the one arm...possibly a flush went in that.
The other one was same, no blood able to be drawn. The new LLMD we are looking into is talking about testing for thick blood, which I understand sometimes happens w/ chronic illness?
They ran the steroid for about 30 mins, I thought the tissue looked swollen around the area. Then they ran the saline/hydration. Both caused pain.
She now reports that it feels like her nerve is between a pair of scissors. And nothing has been inside her since friday am.
Posts: 62 | From VA | Registered: May 2016
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Fish oil can thin blood- like from Nordic Naturals: Omega 3-6-9
To save a lot of time and suffering I wished we would have started our family member on paleo for autoimmune: Paleo Approach : Reverse Autoimmune Disease and Heal Your Body (Paperback) (Ph.D. Sarah Ballantyne)
Basically, 100% grass fed meats, veggies and fruits. No gluten, grains, nightshades, sugar, legumes, dairy.
We tried organic free range chicken but that triggered them because they feed grains to chicken.
After starting that diet inflammation and pain dropped by about 80%.
Our family member never had auto-immune or gluten issues before getting ill.
Hang in there - things can get better!
Disclaimer: This is not medical advice. Please consult a physician for medical care.
Had to say that Posts: 764 | From Northwest | Registered: Sep 2014
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
She might have protomyxzoa rheumatica (FL1953). It makes thick blood. Try changing her diet to low fat plant based and see if that helps (MCDougall diet). I felt better in 3 days. Also gluten free.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
THanks all, I should say that we did not even get to trial the magnesium as the IV was taken out.
Her headache is now going on 14+ days. We have a LLMD who felt one dose of the steroid might be able to knock it out.
The Mag was also an option to knock it out.
We now have two LLMDs who have differing opinions. One is sure she has Babs, the other Bart. The one w/ Bart dx is who has been treating...but just not sure!
Posts: 62 | From VA | Registered: May 2016
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posted
Steroids .. a really bad idea for someone with Lyme.
I hope you can find someone you can trust...and I hope her pain goes away SOON!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I've met one other person who's had a terrible response to IV fluid. It does happen. The reasons they finally cited are an allergy to the excipients, and a too-fast infusion rate, which causes swelling in the veins and fluid imbalances if the circulatory system is working very badly.
It seems that with POTS her circulatory system would qualify.
So considering that we're probably looking at some kind of fluid imbalance I would try vitamin b1, b12 for ammonia clearance, and aspirin really can't be beat for a safety profile for pain. However that will thin the blood out ( kind of bad for POTS) so maybe also try vitamin K2 to preseve volume.
Not sure if that helps, but those are my thoughts.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Jordana those were good! THANKS
Posts: 62 | From VA | Registered: May 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
My blood pressure is wonky and bee venom has helped thin the blood ..also distracts the autoimmune aspect ..regulates th1 th2 ...
my friend with babs is only helped by anti malarials alinia,malerone?
jordan had a video posted of a neurolgist in ny .dr elena frid speaks of this auto immune pathogen caused encephalitis needing ivig ...however i feel like bvt can do the same ..hoping anyways
Have you considered a port or picc ..my veins would not take more than 2 montha of ivs after all the poking from useless blood work ...licorice helped the blood pressure its like synthetic aldosterone. High salt intake too
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
I think they are going to do a mid-line, which I am not totally sure what that is!
I have recently heard of this and actually an out of the box ER dr brought it up~however since at that point she had only had the headache for 48 hrs I declined the LP.
For the POTS she is supposed to be eating an additional 1 1/2 tsp of salt daily. Which when you look at it in a baggie is actually quite a lot. We may need to switch to salt pills as she is avoiding eating b/c it's too salty and she loves salt.
Do you take the licorice as a supplement? In pill form?
The poking is awful...she is still in pain. Posts: 62 | From VA | Registered: May 2016
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