My husband was looking up some stuff for me and I was mentioning that I had many symptoms that just didn't 'add up'. Other than my ususal Lyme symptoms I am always thirsty, go to the bathroom a lot, am dizzy, weak, feel faint, and more.
I was shocked to learn about Dysautonomia. But I have regular blood pressure, not low or high. I also wonder if some of my brain fog and irritability come from that too. Oh yeah-wicked migraine like headaches too.
Anybody else? My GP doesn't believe in Lyme and wouldn't even bother refering me out. Who diagnosed you with dysautonimia? Has it gotten better for you? I've nearly fainted many times. Now I'm sure this is a big part of it.
Posted by gingerteacup (Member # 36208) on :
I have it, LLMD diagnosed me. Sea salt with water works very well for me to stop the dizziness and fainting. Doesn't do much for my fatigue though. I know how scary passing out is, so sorry you are suffering from this.
Posted by manybites (Member # 33750) on :
Fainting was bartonella in my case. I used to faint and my husband will be there next to me carrying to the ER.
Bartonella treatment stoped it.Than babesia raised its ugly head.bartonella makes you go often to the bathroom and .Maybe bartonella is the one very active at this moment . babesia can cause dizziness and severe fatigue.
I received many diagnoses from the doctors until I found I had lyme and coinfections.I had two strains of bartonella. When I looked back I learned that I had bartonella for decades.
Posted by horsefly (Member # 34232) on :
wow-thanks for the advice both of you. I hadn't thought of sea salt. I had no idea bart caused fainting spells. The problem is I have almost every symptom listed on the checklist so it makes it hard to tell. yea, maybe bartonell is active right now, I never thought of that. Take care.
Posted by WPinVA (Member # 33581) on :
I have it too. My LLMD spotted it. It has something to do with the blood pressure being different if you're standing vs. lying down.
My main symptom was an inability to stand without support for more than a minute. I had to lean against something or sit down.
Thermotabs have helped me immensely. They are buffered salt tablets. Bought them on the internet.
Posted by Keebler (Member # 12673) on :
- Very common with lyme & coinfections.
Any good LLMD should will all about it. Hope you can get to one soon. If your MD does not believe in lyme, that's not going to do you much good.
I used to pass out a couple times a day. It can get better.
CARDIAC, MITOCHONDRIAL & ADRENAL SUPPORT can help. Details below. ---------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by Keebler (Member # 12673) on :
Diagnosing Lyme Disease (&/or whatever else is going on) -
Posted by Keebler (Member # 12673) on :
- In the meantime, I would start with adrenal & cardiac support. Hawthorn comes to mind first. That is detailed in the Cardiac thread but here's a start:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors -
Posted by Rivendell (Member # 19922) on :
Licorice or Florinef can help your body to retain salt. Also drink extra water. Try support hose at least 15/20, 20/30, or 30/40.
Even with these measures, I still get light headed while standing or sitting upright.
There is research about the mushroom called "Lion's Mane" that is helping people to heal from nerve damage. I may try that next.
Good luck.
Posted by horsefly (Member # 34232) on :
I'm back. Just saw your posts, so much great information, thanks Keebler, WPinVa & Rivendell. My BP is fine, though a few years ago it used to go down pretty low. And it doesn't drop when I remain standing for a few minutes. Of course i'm dizzy all the time, and have all the sx of Dysautonomia so I'm confused.
My neuro consult a few months ago was 'fine' too. I've had all the regular heart testing minus the cath. No problems. Actually it was my LLMD who sent me to the neuro in the first place.
I'm sorry you all suffer this too, isn't it scary at times? I'm wondering if adding Thermotabs or extra salt with increase my BP? Oh and this also gets worse during my monthly cycle. Are we having fun yet? Posted by jackie81 (Member # 27031) on :
If onehas dysautonomia will it reslove with lyme traetment? i am asking bc it seems like i have all of the symtpms as well and i seriously dont want to deal with anything that cant be fixed
Posted by 'Kete-tracker (Member # 17189) on :
Horsefly, Just keep in mind that "Dysautonomia" is a description of a general condition, NOT a specific diagnosis or disease.
From Wiki: "Dysautonomia (autonomic dysfunction) is a broad term that describes ANY disease or malfunction OF the autonomic nervous system. {capitals mine}
This includes postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), vasovagal syncope, pure autonomic failure, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), orthostatic hypertension, autonomic instability and a number of lesser-known disorders...." {phew!}
Lyme IS one of many pathogenic causes for, or a contributor to, the condition.
Suffering from "dysautonomia"? It deson't explain the cause. Sort of like saying you suffer from "Tinnitus", which is simply ringing or buzzing in the ears which has no external cause (noise source).
However, tinnitus can be from lack of sleep, a food allery, sinnusitis, middle ear infection... or even a loud firecracker!
You need to find a doc who is willing to get to the Bottom of your situation, if your GP isn't willing, or can't. It's one of those conditions where you shouldn't just treat the symptoms.
You probably do have more going on than just Lyme... one of the co-infections mentioned above, or maybe a virus. I'd try to find a Lyme-literate neurologist. I hope you figure it out. Good luck!
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