posted
does anyone get very low blood pressure w/ fatigue and pressure in the head?
this is day 3 or 4 of taking florinef (2 of my lymie friends have taken this) to raise it but i'm still getting pressure in the head and fatigue.
i think i'm like wild condor- doc today said when i sit down its at 110/something but upon standing it drops to 100/60
Posts: 116 | From Texas | Registered: Dec 2009
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posted
kitkat- what has helped you if anything? has it improved at all? how long have you been sick?
what did they do for you in the ER?
Thank you so much for your reply!
Posts: 116 | From Texas | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Very common with lyme disease. It's called NMH. Neurally Mediated Hypotension - or perhaps two other variations called POTS and orthostatic hypotension.
It has to do with the way lyme messes up our various nervous systems and our adrenal/kidney monitoring systems.
Take this to your LLMD for your first appt. there tomorrow. S/he will know all about it.
Be sure not to get up quickly, give your body time to adjust before walking. This can also contribute greatly to fatigue and even passing out so if you feel like you need to sit down - no matter where you are - listen to your body.
The florinef should help and, ultimately, treating infection and adrenal dysfunction that goes with lyme.
For some who can't take florinef, moderate intake of SEA SALT (not table salt) throughout the day in a large glass of water helps as can adrenal herbs for support.
Ask your LLMD for materials to read. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
oh and kidney doc didn't seem overly concerned- just wants to mointor protein levels every 6mths or something- putting me on a med will lower my blood pressure more..
i'll probably be back in there long before that- he did say he would do an ultrasound to check my kidneys and gallbladder and did another urine check
I guess since my actual kidney function blood test was normal he wasn't jumping the gun about anything- said if i had over 1000 of protein then he would be concerned.
wouldn't do the heavy metal testing though- guess i get to ask Dr. W tomarrow.
Posts: 116 | From Texas | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Every body with lyme has adrenal issues. Everyone. It is impossible to have such a toxic infection and not have it affect the entire endocrine system. Your LLMD should be able to help.
See books and links posted in your kidney thread. Singleton's book is essential to understanding the complexity of lyme, etc.
posted
Gee- then why the heck are my cortisol levels in range? maybe b/c my infection is recent? doesn't make sense if my kidneys are already feeling it i too would think my adrenals are off...
Why wouldn't my test show something?
Posts: 116 | From Texas | Registered: Dec 2009
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posted
keebler is NHM a heart issue? i guess i'm confused...i can't watch movies on this computer- i thought NHM was a neuro thing?
Also since vigerious excersize is bad for the heart- is it bad that i am having a stress test done? how else can i know how my heat is doing?
Thanks so much for your input!
Posts: 116 | From Texas | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- NMH is a combination of things or can be. It can also be hard to determine exactly what is going on as so many body systems are hit and on overdrive or totally exhausted.
This is for sure: everything affects everything else.
Let your LLMD sort this out tomorrow. As for having a stress test done, be sure to ask the LLMD tomorrow. I would not do it but then, I did, passed out and the machine nearly strangled me when my clothes got stuck in the beltway/walker pad and the rollers under that.
The tech and the doctor there at that time freaked out and later said no one had every done that before. it took them a very long time to get the machine to turn off as they were trying to get me off the beltway, not knowing my clothes got caught up in the machine. That was over 15 years ago so I hope the machines now have better emergency cut offs but, with my fainting history from exercise and fatigue, a stress should have been a predictable disaster. But no one believed me - even after this, the doctor dropped me as a patient.
He had known nothing about lyme. I didn't even know I had it then. I thought I "just had CFS" but that doctor had no clue about the issues around the fainting that I faced several times a day.
So, when I say you need to let your LLMD sort this out, there are reasons for that. Most other doctors simply don't have the knowledge and the complexity of lyme blows them away.
If you need special tests, your LLMD should have a good reputation with may other specialists who have a better understanding of all that can go awry with testing of lyme patients.
Yes, aerobic exercise can be very damaging for any one with an infection that can affect the heart, as can lyme - but that is just one reason why aerobics are not recommended when so ill. There are many. You can still do Tai Chi or walk.
Please let your LLMD organize all your tests and medications. Let him/her know everything that you are currently taking - all the doctors you are seeing and what tests they have planned for you.
IF lyme is the underlying problem here, many symptoms should sort out. If the other doctors you see are not lyme literate, their suggestions to you could interfere with lyme treatment and your progress. ---
As for the adrenal issues. Your cortisol tests may well be in normal range. But those tests do not measure everything. Lyme is a very toxic infection. Such toxic infections are very stressful on the body. The HPA axis (a sort of triangle from the brain to the adrenals) is always challenged by lyme.
Adrenal support and good self-care are suggested by the top LLMDs. Be sure to read the Burrascano guidelines and the Singleton book about all that.
But . . . you are very lucky to be seeing your LLMD tomorrow. You may be able to hand off a great part of this and then have to learn just what to do self-care wise, which is basic healthy eating, good rest, non-aerobic exercise, etc.
Be sure to take notes tomorrow and take in a list for the LLMD as you may forget something during the appt. if it's not on your list. Just hand her/him the list. They will understand.
The just listen to what they have to say. You want to be sure to listen, above all. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler- thank you for sharing that with me- i will most certainly ask my doc about the stress test now
Here is the thing and i would love to get your opinion on this- this doc is supposed to be great- but he's 4 hours away
He was the earliest i could get in- there is another doc here in houston- that my support group leader sees- but she is so booked i could not get in til the 13th
Is it a bad idea to see this doc tomarrow and then follow up with her?? She actually takes insurance and is much closer..
Wouldn't it be stupid to start up things with him and then switch? I guess i don't see how we could continue to afford him but
I liked him so much from the conversations we had- he answers his own after hours line!
As for arranging with other doctors- i don't know which other docs are lyme literate here in houston- the lyme literate doc here in houston might- another advantage to seeing her
Obviously my nephrologist isn't lyme literate but he doesn't seem like he won't take into thought everything
This is such a difficult choice for me...in the end it would be smarter financially to see the doc here in my own city- i didn't find out about her until recently
The bad thing about the first doc i saw (who i did testing through) is that he would not address all of my issues or make recommendations about who to see etc b/c he is out of the area too- i realized right away that would be a problem
How do people do it when they are traveling far distances to their doctors? I have the advantage of having a doc here in the city right under my nose- but i have a feeling i will LOVE this doc i'm going to see tomarrow...
Can you tell i have severe brain fog and decision making issues?
Posts: 116 | From Texas | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Okay, this may not flow - as I've cut and pasted with thoughts that I'm not sure if they wound up where I intended or not.
---------
Of course, keep the (distant) LLMD appt. on Wednesday (today).
Still approach this with great respect and listen very carefully - as if you are on board but you can let him know that you did just find out about a LLMD in Houston, just to be honest. But don't assume the Houston one will work out and DO NOT DROP the distant one until you have a back up plan totally secured.
You don't want to fall through the cracks if you don't get in to the Houston LLMD for some reason (appointments can fill up for months ahead in the matter of day) - or if you don't think that would be a good match.
You may actually do best working with both of them. Two wise brains are better than one sometimes and it could be that each has a different sub-specialty of sorts that would complement each other.
Some LLMDs love working as a team member but you'd have to be clear which would be the primary one and which would be the consult one so that everyone is perfectly clear on all that.
Ask if the local LLMD would be available for consult in emergencies? Most are not but, if local, there may be some middle ground there.
For the local LLMD: The 13th of JANUARY? That is not bad at all. But you'd best call ASAP and make the appt. just in case. It may already have been taken by the time you call.
Then after you see the one 4 hours away you can decide if you want to see the local LLMD. AFTER seeing that one, you'll have two to compare and then decide on with whom to schedule the follow-up and which path to start.
I would not miss a chance to meet with either one of them and certainly see both before making a decision.
You said "my nephrologist" - you may not need him. You said your tests today looked good and you would only check in with him maybe once or twice a year. Of course, he will not treat lyme for you. I'd not claim him as one of your doctors if you just check in for a test once or twice a year.
See what the LLMD(s) say the Florinef, etc. They may be able to do the kidney function tests on you, too.
Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
okay i've been getting minor chest pain and i forgot to mention when i noticed the drop in blood pressure- i went to my cardio b/c
my limbs were going to sleep/tingly...should i do an echo and tell them i don't think i can make it through a stress test?
Posts: 116 | From Texas | Registered: Dec 2009
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