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High D Dimer (blood clots?) and hard to breathe like elephant is on chest

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Posted 12/23/2018 2:35 AM (GMT 0)
My wife (who also has Lyme Disease) has been having shallow breaths and feels like there is an elephant on her chest and needs to take deep breaths more often.

She was concerned and went to a clinic and they did a D Dimer test and she had high results. She just got a call back and was told she needs to go to the ER right away for a CT Scan. We are waiting for her results of a second D Dimer test now.

I'm wondering if anyone else had something similar and if there is any tests or questions we should potentially ask the Doctors here, as I know often times they don't know much about Lyme Disease. And I'm not sure if this is due to Lyme Disease or unrelated, but if anyone else has had anything similar please let me know if there is any advice that we could used to be more informed and push back on doctors.

Thanks in advance to anyone who responds. So far there isn't a big need for alarm but I would like to know anything relevant to make sure the doctors don't overlook anything (especially the more weird stuff that tends to only happen with Lyme)
Posted 12/23/2018 3:41 AM (GMT 0)
So sorry you two have this to worry about.
I hope the CT rules out a clot.

I have read that high D Dimer isn’t mean for sure there’s a blood clot.
I hope this is the case for your wife.

Please let us know the outcome
Posted 12/23/2018 4:21 AM (GMT 0)
When my breathing was like that it was from taking a good amount of prednisone. Is she treating lyme and are the symptoms new or just getting worse? Sorry I don't know anything about the d dimer test but if it's a new or increased symptom it may be from something else she is taking.
Posted 12/23/2018 4:30 AM (GMT 0)
The breathing issue started in the last 3 days. The only real thing she has done differently in the last month that we can think of is LDN. She actually was taking potentially too high of a dose of Naltrexone to call it LDN really. She was taking about 13mg of Naltrexone (due to breaking up the full dose at home as opposed to having it compounded at a lower dose). When I found out about that I mentioned she may want to stop it until it's a lower dose, as I did it for 1 night at that high of a dose and felt super depressed the next day and symptoms flared up. No clue if this has anything to do with that though. I just saw there was an old thread talking about how blood clotting and thick blood may be more common in Lyme patients.
Posted 12/23/2018 5:01 AM (GMT 0)
It seems like lyme has the potential to bring out the hidden health conditions that were already somewhat in place. I had a calf clot (almost a DVT, not as deep). An ER ultra sound confirmed it. Went on thinners for a short time. I also knew about some clotting genes I have, and they finally surfaced.

I didnt know about the D Dimmer test, now I do.

If she has a clot, might want to do gene tests Factor 5 (V) liden and factor 2 (II) Liden. These are the two conventional medicine recognizes most. There are more tested on 23andMe gene testing, but you need a good decoding program to catch these, (Like the MTHFR Sterling App $50) not the free ones, you get what you pay for.

I diagnosed my self and told ER what I suspected. Had I been out in the boonies and not knowing what was going on, might not have had a good ending.
Posted 12/23/2018 6:04 AM (GMT 0)
Thanks everyone for help.

The tests just came back all negative. Weird that D Dimer came back positive about 8 hours early. I'll have to look into that. Maybe a test with too many false positives?

Astroman - will potentially look into those gene tests.
Posted 12/23/2018 7:59 AM (GMT 0)
Good news, Lymelearner!

Whew!
Posted 12/23/2018 8:14 AM (GMT 0)
I'm still hoping it's good news. But my wife doesn't have much trust in the doctor, as the doctor dismissed her based off the test result of another patient at first, but then still said she won't die tonight.

Looking more into D Dimer test.
Luckily for me my pubmed-kung-fu is strong due to Lyme Disease research.
https://www.sciencedirect.com/science/article/pii/S0422763813003166

Looks like D Dimer alone is not 100% sensitive for Pulmonary Embolism. Which I think would be the leading hypothesis based on the original D Dimer positive and the sudden onset of shortness of breath and chest pain. It's recommended to combine D Dimer with PetCO2 in the study above. But that PetCO2 test was not run. She will follow up at urgent care again tommorow.

Also finding out that the majority of Pulmonary Embolism cases are diagnosed postmortem, it doesn't make me feel very confident that all is clear yet.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767072/
They did an analysis on cause of death of people who died of PE. It turns out only 31% of those cases was PE even considered as a diagnosis.
Posted 12/24/2018 11:37 PM (GMT 0)
So now she was recommended to do a CT scan.

They found main pulmonary artery dilation to 3.5 cm.

The radiologist has mentioned more tests should be done to rule out Pulmonary Artery Hypertension or Pulmonary Hypertension (PAH/PH).

I found a study that talked about causes and statistics on pulmonary artery dilation.

https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201406-253PP

It seems bacterial infection is also a potential cause. They included syphillis in the list of possible causes which makes me think maybe Lyme could be a potential cause too as they are basically cousins.

Anyone else have any experience with tests like this or conditions like this?
Posted 12/26/2018 11:39 PM (GMT 0)
I did a search on the forum. Many postings about the same feeling of an elephant sitting on chest.

Just put "Lyme feels like elephant sitting on chest" in the search box and they should come up.

I hope this helps .
Please take care and tell your wife I hope she gets some answers soon.
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