I've had Lyme for 28 years, and until 6 months ago I was pretty much symptom free, and had been for a long time. I had a very minor stroke that I recovered from in a couple weeks, but it brought my Lyme Disease back.
I've continued to get worse until virtually ALL medications are being rejected by my body. If I take them, they make blood pressure goes up dramatically, and I get burning in my lungs and skin...horrible pain.
About 3 months ago I was in a car accident and badly injured my left arm. Since I wasn't able to take any antibiotics, I've been fighting a losing battle with Sepsis. It's soooooo scary because it is horrifically painful and I can't even take any pain meds. I'm trying to survive.
Does anyone know of anyone that's ever lost the ability to take any meds? Anyone know who has experience treating with a super rare condition like this? Thank you soooo much. Love you.
Posted by kgg (Member # 5867) on :
First of all, I am so sorry you are dealing with this. Lyme can stay dormant for years until there is a major stressor in our lives. Then it rears it's ugly head. Sounds like the stroke and car accident were the tipping point stressors.
Sepsis is the key word I noticed in your post. Please look into high dose IV vitamin C. There is medical research that shows it is helpful with sepsis.
It also sounds like you are dealing with MCAS. I am not super familiar with it. But having heard a few broadcasts, it makes me wonder. Especially with all of the intolerances you are experiencing.
Lastly, to those who know me here, I am a broken record. But I found mild hyperbaric oxygen treatment very helpful with Lyme. It helps with all of those reactions, decreasing inflammation and decreasing reactions. It is not a speedy process, but over time I found it healing. There is a long thread I would encourage you to read here on medical.
For years I have followed Dr. Neil Nathan. He seems to be the doc that see all of the patients that were super sensitive and did not tolerate "standard" Lyme treatment.
He does not treat any more. But will do consults. He also has trained some other docs. There is a list on his website. Sadly none in Nevada. But there are some in nearby states and some who do telemedicine. https://neilnathanmd.com/ Posted by Phoiph (Member # 41238) on :
60-bit,
Unfortunately, the reaction you're dealing with isn't that rare.
In addition to kgg's thoughts, I have another perspective to consider.
Intuitively, have you considered that what you are experiencing might not exactly be a return of Lyme (bacteria) per se, but an out-of-control inflammatory response triggered by 2 significant events (i.e., stroke and car accident/arm injury)?
I believe that having Lyme in the past can leave people susceptible to over-reactions of the neuro-immune system such as this.
In which case, if true, if you were to do traditional Lyme-kill treatment, it might actually increase the inflammatory cytokine response and worsen symptoms of MCAS, etc.
The goal would be to quell the inflammatory response via modulating the neuro-immune system, and heal the inciting injuries and infections.
Regardless of the cause, as kgg suggested, mild hyperbaric would be a huge consideration. It has the ability to treat stroke, arm injury, cytokine storm, infection, and modulate the neuro-immune system (and so much more).
I truly hope you take kgg's advice and read the mild hyperbaric thread. You can always PM me with questions or for more info.
Posted by mlg (Member # 35383) on :