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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
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551343 tn?1506834118

A NEWBIE ASKING FOR HELP GUYS

From Misspelt: (copied from introduction thread).

Hello, all.  
I'm a 34-yr-old single mum.  I fell ill 3 years and one day ago.  I still have no diagnosis.
I just discovered this group tonight.  I read through several of the previous posts, and it seems this is where I belong.

My symptoms began very suddenly, 6 days after I moved to Arizona.  I was walking to the car to clean it out and suddenly felt very dizzy and faint, with a strange feeling in my chest, as though I were wearing a vest that kept tightening itself.  I sat down in the car for a while, and then made myself get up and get back inside the apartment.  Once back indoors, my symptoms persisted, and my heart rate was jumping up to 140bpm while I was lying down, and then, after 20 minutes or so, it would crash down to about 50bpm.  My level of consciousness dropped so badly that I could barely speak complete sentences.
I went to the emergency room that night and they couldn't find anything wrong with me, noting only that my heart rate was low.  They sent me home.
I was so weak and dizzy and confused that I could barely sit up to eat. I couldn't think straight or speak at a normal pace and without slurring and stammering. Noises were piercing and would send a feeling of electric shock from the base of my skull to my chest.  Vertigo set in, along with the dizziness/faintness.  My lips and nose area, my arms, legs, fingers, pelvic floor area, and abdomen were tingly like they had fallen asleep... this usually came in sickening waves, about 3 seconds apart.  I became intolerant to any medication, caffeine, nicotine, and alcohol (anything that worked on the CNS or changed my blood pressure).  My metabolism dropped to completely nothing... I gained 30 pounds in three weeks, making me the heaviest I'd been in my life, aside from pregnancy.
I spent months like that, barely able to leave my bed, and going to the emergency room when my heart rate would get too high or when I was barely able to maintain consciousness.  Each time, they sent me home, only noting that my heart rate and blood pressure were low.
   11 months later, I began to get red blotches in my eyes from burst blood vessels, and it felt like there was lots of pressure in my eyes.  They felt like they were bulging. I got a migraine and was in so much pain that I had to take something for it, despite the intolerance to meds.  I cut an ibuprofen in half and took it, and fell asleep about an hour later.  When I woke, I noticed that my vision was blurry.  I thought it was just blurry from the cat allergy or sleeping with my arm over my eyes or something, and that it would correct itself as the day went on.  It didn't, and I realised that my eye wasn't actually blurry... I was experiencing double vision, in just one eye, so I was seeing three images, slightly askew from one another.
    I saw my doctor the next day and he sent me to an opthalmologist. My eyes were perfectly healthy.  
    Several emergency room visits later, my doctor finally got me in to see a cardiologist.  They did a tilt-table test, a 48-hr Holter monitor, and echocardiogram.  Everything came back normal except that I am hypovolemic and that my heart rate drops as low as 38 beats/minute.
     I had a Lyme's titer, thyroid tests, endocrine tests, etc.  No signs of infection, hormone imbalance, organ dysfunction, etc.
    As far as any test went, I was perfectly healthy.
    In the meantime, my vision grew worse, and I have double vision in my left eye.  About a year ago, the right eye began to get a little blurry, as well... so I see two clear images superimposed over a third, blurry one.
    The heart rate, blood pressure, vertigo, and dizziness issues continued, along with the impaired mental functioning and loss of memory.
     I am always ill with these things, but they become especially bad if I try to walk anywhere or do even the lightest of housework.  Sometimes, I will have an episode of these exacerbated symptoms for no apparent reason, but it's usually brought on by trying to take care of my apartment by vacuuming or tidying up.  When I have these "episodes", they last anywhere from several hours to 6 months.
     After 3 years and a day, I am no closer to discovering what's wrong with me than I was the day it suddenly began.  I cannot work, I cannot take care of my own apartment. My teenage son handles the shopping and laundry and pays the bills, because I physically cannot.
     My metabolism is still nearly dead, and I have not been able to take off the 30 extra pounds (because I can't exercise).  My maintenance weight intake is now 600-700 calories/day.  If I eat any more than that, I pack on weight.  I don't dare eat less than that, to take off the extra weight, even though it would make for less work in just moving around, and trigger the illness less.
    I currently have no more testing lined up, and no more appointments lined up.  I'm fairly certain that my doctors just don't care about whether I get treatment or not.
    After 3 years of being unable to work and being unwilling to ask for help, I am finally applying for SSI.  I no longer have any faith that this will get sorted.
25 Responses
551343 tn?1506834118
Sorry I typed the wrong name, well it came out wrong lol. My brain is poopy this morning.

Guys the forum member is missfett not Misspelt. That was me misspelling it lol. I hate brain fog.x
551343 tn?1506834118
Hi and welcome.

I would look at Dysautonomia. My brother has this and started with very similar symptoms. Anxiety is the trigger. For example was there a stressful reason why you had to move to Arizona which could have put you under abnormal stress to trigger this?

Also look at Postural Orthostatic Tachycardia Syndrome.

My brother now takes a beta blocker and is much better although he still has attacks.

I am not saying you have dysautonomia but when you body behaves so erratically it can be caused by your core.

Either way it cant be much fun for you. xxx Maria
1530171 tn?1448133193
Look up hypothyroid type 2.
Goes undetected most of the time.
gtg!
More later.
Niko
Avatar universal
So sorry to hear your story.  I think there is a really good chance you do indeed have a bad case of Lyme Disease.  Unfortunately, many people test negative. The tests are far less accurate than most doctors realize.  Although Lyme is present in Arizona, it isn't common.  You could also have contracted it before you moved there.  Where were you before Arizona?

You could also have one or more coinfections that ticks carry (filthy creatures!).  Diseases such as babesiosis, bartonella, or ehrlichia can make the Lyme worse, and cause additional symptoms that confuse your condition.(For example, "air hunger" is a classic symptom of Babesia. Bartonella causes sore soles and anxiety, among other things.)

Please find a Lyme Literate Medical Doctor (LLMD) near you.  Travel to one if you have to.  You can also get referrals from a local Lyme support group.  Also, www.ilads.com has a lot of good information and also offers referrals to their member doctors.  An Infectious Disease doctor will not be helpful for you if you have already tested negative.  They erroneously believe the tests are always accurate when they're negative and are infamous among Lyme patients for denying diagnoses and treatment to people with overwhelming symptoms of Lyme. They also seem to be unaware of coinfections.

I tested negative on a screening test and on a CSF test, leading multiple doctors to tell me I didn't have it.  I ultimately showed diagnostically positive on a Western Blot at IGeneX.  I have had a number of the same symptoms that you have.  The fact that other apparent possibilities have been ruled out makes Lyme a good possibility for you. It can cause every symptom you describe.

Lyme is controversial, and many doctors don't know much about the reality of the disease and how severe it can be.  I had it for 6 years, with chronic and debilitating symptoms for the last 16 months of it before I fibally figured it out for myself and went to an LLMD.    12 doctors had failed to figure out what I had.

IGeneX does much more advanced testing than other labs, and they will tell you if you have any Lyme specific antibodies, not just the ones the CDC surveillance (sampling) criteria looks for. They also offer excellent quality coinfection testing.  

I would be happy to provide you with more info if you would like.

P.S. It does sound like you have dysautonomia.  Lyme is known to cause symptoms consistent with dysautonomia.
551343 tn?1506834118
HI Ricardo oh Air Hunger. Now believe me or not but when i started to get sick i would struggle some days to get air it used to make me feel a bit paniky but i would sit quietly and sip some water and it would sort itself out.

I am going through another stage of this at the moment and a bit of breathlessness but not as extreme.

I thought it was anxiety. I did have it bad though it was really horrible, it lasted for weeks maybe months on and off.
1530171 tn?1448133193
There might be a connection to Bartonella, EPO and "Air Hunger"
as you call it. The Willey online library has an article on that, not free,
so I'll look for another source.
Cheers.
Niko
Avatar universal
The air hunger you describe sounds like a friend of mine who has Babesia in addition to her Lyme and Bartonella.

Mine has been continuous, with some variations in severity, since it started in Jan. 2011. I have two parts to it.  I run out of air while talking and my voice trails off. When it is bad, I can't finish a sentence and I have trouble saying certain sounds (such as m) unless I stop and get enough air first.  Those who know me know this is absolutely not normal for me.

The second part is my ability to take a deep or satisfying breath.  I would try to take a big breath and my lungs would just stop.  I just couldn't take in any more air. On a bad day I would fail to take a satisfying breath about 95% of the time. The ENT I saw got it right when he said he thought it was a problem with the nerves that control breathing. (My research showed that the 10th cranial nerve (a.k.a. Vagus nerve) controls breathing and digestion. I have had major problems with both, leading me to believe Lyme and Bartonella have infected this nerve in me.)

My breathing got so bad, I was diagnosed with asthma and given steroids last summer. That sent me into the ER with even worse breathing. But because my Oxy level was 96-98%, they just gave me an albuterol breathing treatment. The steroids then kicked off a downhill cascade of new symptoms that finally led me to an LLMD.

The good news is that with treatment, I have slowly improved.  I am on Bicillin shots every three days and the day before a shot I notice I have to work harder than usual to get enough air.  My doc calls it "craving the next shot."

We tried 3 rounds of herbals for Babesia and I didn't see a difference.  I also tested negative for Babesia 3 times.  Because my breathing varies along with some other Lyme symptoms, we have cautiously concluded I don't have Babesia.

Have you done any research on Babesia yet?
551343 tn?1506834118
Hi no I have not done that for Babesia maybe i will have a look never heard of it to be honest lol.

Yes this air hunger is weird. Like when you yawn can get the air into your lungs and it feels good...with me I can yawn and there is no trigger for the air to go into the lungs or something its bizarre and can be scary. I just thought it was anxiety and would do something kind of not trying to panic as I thought i would suffocate some days. It did last a longish time, and i do get it on and off but no way as bad but at the moment with the scratches i am finding it hard sometimes to get my breath or get breathless.

Well not long now guys 24th May.

I shall be here (hopefully seeing Dr Jean Monro. I expect will be a waste of time i have had so many knock backs but must have the hide of a rhino as I am still determined to find out what it is.

http://www.breakspearmedical.com/
2095501 tn?1333146866
I'll be asking my doc about giving me the Western Blot test for tick-borne diseases and to look into the possibility of POTS.

In the meantime, do any of you have any suggestions for coping with depression caused by being undiagnosed and disabled?

My lifelong coping mechanisms consisted of physical activities and seeing friends.  I can no longer do those.

I'm an artist and an avid gamer (video games) and a film/tv fan, but I get weary of doing nothing but gaming, watching tv, and making art.  After three years of doing the same things, all day, every day, I'm going crazy, and spiraling deeper into depression.

Are there any tricks for fighting depression that don't involve "work on a hobby", watching things, reading things, or playing games?
551343 tn?1506834118
Well daft as it sounds i got 4 chickens, they make me get up and do things for them. then I have taken up wine making have loads of the stuff lol but its fun trying new recipes and making wine is not hard work.

Now i am into really easy cupcakes gluten free with little beating and I am trying all kinds of recipes lol. I cant do beating it wipes me out and i dont have a machine lol. Its fun trying out new gluten free recipes.

Its finding something to get up. I have a dog too and a mobile scooter and i take her out everyday for a walk.

I too find there is only so much tv and computing i can put up with and reading is a no no for me as i lack concentration.

Go for the Lymes testing ok.xxx
2095501 tn?1333146866
Oh, I forgot to say... I didn't move here because of stressful circumstances or anything, and I came from MN... huge risk of Lyme's and other tick-borne stuff.  I also camped on the way down here and had to burn damp/partially rotten wood, which could have had multiple infectious spores.
551343 tn?1506834118
oh i dont drink by the way, but its nice to make the wine for families and friends.
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