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First Trip to ER Last Night

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Posted 8/16/2018 9:00 PM (GMT 0)
First, I want to thank you for this site. I find that even my friends are tired of hearing about this and tune out immediately when I start talking about it.
Last night I was laying in bed and felt like I could not get my breathe when breathing through my mouth. When I breathed through my nose, it was fine but I could still feel the pressure in my throat. My heart was pounding out of my chest and the left side of my tongue felt numb. I laid on the couch for about an hour sweating and finally got up and went to ER. I am on day 26 of doxy.
I went to ER and they did the usual blood work. I kept pulling my shirt up to show off my tiny red dots on my torso that are continuing to grow in number. I even pulled up several sites on my phone to show them barb but they all looked at me and ran EKGs and blood work. After all coming back with normal levels, they sent me on my way and said, "follow up with an infectious disease doctor".
I have an appt in just less than a month. It is crazy that some Doctors don't realize or care how miserable you are. It seems illogical when one thinks about the concept of "smothering for a month".
I was tested with Western Blot through Quest and was negative. I have a whole host of neurological symptoms (tingling in extremities, hand tremors, left side of face insensitivity, sporadic chest pain (oddly made somewhat better with aspirin and magnesium), left side tongue insensitive, crazy dry mouth. MRI is "unremarkable" as was the chest xrays they did last night. I did show a mildly low albumin level...whatever that is. It wasn't off the charts low or anything. I have also had a full stress test with contrast. Negative......
Last night while in ER, I ordered the full Igenex testing bank (urine and blood). If that is negative, I will be scratching my head.
I don't want to be positive for lyme, but I feel like the experts on here (who i trust) have nailed it down to that. At least if I had a test, the docs would give some credence to what I am complaining about. To them, I look like a healthy former military dude with good lab work.

Post Edited (robert rose) : 8/16/2018 3:03:24 PM (GMT-6)

Posted 8/16/2018 9:14 PM (GMT 0)
I'm so sorry. You will need a Lyme literate doctor (LLMD). You can contact ILADS or start a post "Looking for LLMD Near your area," if you haven't already. I have not seen an Infectious Disease specialist, but from what I've heard from others here, they are not helpful.

I have Lyme and bartonella. I had asthma-like symptoms for 4 mths and the full pulmonology workup including challenge test for asthma, which was all negative.

Most think breathing issues are babesia, but I think mine was from bartonella. I also had tightness across my ribs and my chest wall felt hard and stiff.

Bidens pilosa might help some of those symptoms. Hawthorne will help the heart, which could help blood flow and oxygen, I think. Japanese knotweed and Sida acuta may also help symptoms until you can get to an LLMD.
Posted 8/16/2018 9:59 PM (GMT 0)
robert rose - did you find a LLMD yet? Or did you decide not to pursue one yet?

Here's your first post and some suggestions to find a LLMD


/www.healingwell.com/community/default.aspx?f=30&m=4048508
Posted 8/16/2018 11:14 PM (GMT 0)
I actually found one. Without giving the name (not sure about the rules on that) I found an acupuncture and oriental medicine doc that specializes in Lyme. She actually stoppe her practice, went and got her PHD and just came back. I have an appointment in a few weeks. I pray for some positive movement. I Also have an appt with an infectious disease doc. I am hoping he will at least test me. Apparently he is the guy in the area but considering his nurse said he would have just given me ten days of doxy I am already unimpressed. I haven’t seen soul on here that would say that would work. I do appreciate and take the advice I receive on here. Experience matters on this stuff and the docs, at least the regular ones, are disinterested at best and negligent at the most. Thank you so much for the service you provide. I can’t thank you enough[img][/img]
Posted 8/16/2018 11:31 PM (GMT 0)
I also wonder if this throat issue isn’t related to the only medicine that I have to take in life and that is lisinopril.
Posted 8/16/2018 11:40 PM (GMT 0)
What do you think is causing the red dots?
Posted 8/16/2018 11:53 PM (GMT 0)
Sounds just like me...went to the ER countless amounts of times (5-7 times) in this past 8 months since I got acutely sick.. I was an active young dude just like you but they kicked me out just because my bloodwork and EKGs came out normal. At the ER they don't care about chronic illnesses, just whatever is deemed "life threatening" at the moment. It seems like you are on the right track finding an LLMD. Traditional infectious disease doctors are useless and a waste of time and will blindly follow the antiquated IDSA guidelines when it comes to lyme.
Posted 8/16/2018 11:55 PM (GMT 0)
Babesia and bartonella can cause skin issues. The cherry angiomas seem to be from babesia I believe.

Hope you have success and start healing with your new oriental medicine doctor.


Most infectious MD's don't seem to understand Lyme and co but there can be exceptions...hope yours is a good one.

We understand how it feels when family and friends are tired of hearing about Lyme and co so feel free to ask any questions you may have and reach out for support when needed.


Thanks for serving!!!!!
Posted 8/17/2018 12:11 AM (GMT 0)
Just being able to talk is worth a ton. Thank you for your friendship already. I bought a book called “Unlocking Lyme” by Dr.rawls. It is magical. Also, check out Netflix. There is a new show called afflicted. One of the eoidsodes is about Lyme. I haven’t seen it. It may suck but it may be enlightening as well. Be blessed my friends.
Posted 8/17/2018 2:14 AM (GMT 0)
There are a few types of spotted fevers, like rickettsia, that cause red spots. Look up spotted fevers. Make sure you take pictures on multiple days of anything visible to show any doctor you see.

What bout your primary doctor? Will he/she treat you?
Posted 8/17/2018 2:29 AM (GMT 0)

robert rose said...
I actually found one. Without giving the name (not sure about the rules on that) I found an acupuncture and oriental medicine doc that specializes in Lyme. She actually stoppe her practice, went and got her PHD and just came back. I have an appointment in a few weeks. I pray for some positive movement. I Also have an appt with an infectious disease doc. I am hoping he will at least test me. Apparently he is the guy in the area but considering his nurse said he would have just given me ten days of doxy I am already unimpressed. I haven’t seen soul on here that would say that would work. I do appreciate and take the advice I receive on here. Experience matters on this stuff and the docs, at least the regular ones, are disinterested at best and negligent at the most. Thank you so much for the service you provide. I can’t thank you enough[img][/img]

Hope your appt goes well with the acupuncturist as you do want a Dr who is Lyme literate to treat you.

Don’t count on the ID dr being helpful unless he happens to be Lyme literate (which is doubtful)
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