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Active Infection VS Damage from Lyme

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Posted 9/3/2019 5:04 PM (GMT 0)
Abx can hold back symptoms but when you stop them the symptoms return how quickly depends on the individual.

Not nearly enough data on how well Disulfiram works against Bartonella and parasites but considering it’s the shiny new penny i expect lots of good feedback over the next few years. Dr. J and Dr. H are both starting to experiment using it as well so maybe we’ll get better info on where this could fit into a regimen and sequencing.
Posted 9/4/2019 10:44 PM (GMT 0)
Well, My infectious disease Doc again refused any additional antibiotics and had my PICC line pulled. He is waiting to hear from my cardiologist stress test / echo....who has been not wanting to administer because of the infection. Passing the buck and I’m here suffering.

In the meantime, I ended up in ER again due to probably the strongest chest pains since starting Rocephin. This caused hyperventilating and spiking BP. It was mostly likely a herx as I took a mistakenly large dose of oil of oregano (25% in carrier oil) - a full dropper instead of a drop.

The ER doc said my heart is fine, and said I need to stop thinking about Lyme (hard to due when your chest constantly reminds you) because I caught it early and it’s been treated. Essentially said not to come back to his ER (suggested Mayo Clinic or John Hopkins - I live in Indiana). He was very dismissive and extremely rude. This resulted in a cussing and shouting match - including him. Worst bedside manner I’ve ever experienced.

I know understand the term Lyme Wars. I cannot wait for the scientific and medical community to catch up...for everyone’s sake.

Feeling pretty hopeless today, but not giving up. The nurse that pulled my PICC told me to keep fighting, to keep pestering, and get the treatment I need. I just wish I knew what it was. (Throughout this, I’ve found most nurses to be the kindest, most sincere and caring of providers.)

JovaLyme: My MRI did not mention small vessels. I believe this damage is probably what is causing my muscle twitching and some of my earlier, now eliminated, memory and emotional issues. I have heard of MRIs later on showing reduced or eliminated signal abnormality in Lyme patients. Thank you so much for your input and opinion. I’ll look into the diet and Lions Mane.

The last 24 hours have been hard. Thank you all for your continued support and advice.
Posted 9/4/2019 11:41 PM (GMT 0)
Just wanted to post that people with Bartonella DO get better - I don’t know the percentage ... but I do personally know people who have gotten better.

I do wonder those who don’t get better give up treating - as most of us know it’s a marathon that we didn’t sign up for... and it’s so $&#% difficult to just keep going!

I keep in touch with one lady who has been well for 3-4 years and she had bart.
She is symptom free except for a reoccurring erythema nodosum - that happens occasionally -

She treated for something like 2 years (maybe 3?)

And we have forum members who are in remission too.

I should pull up the success story thread.
Posted 9/5/2019 1:52 AM (GMT 0)
Well that is encouraging re: Bartonella. 2-3 years is a long time but then I've been treating since 2014 so I guess time flies when you're not having fun. I wonder what finally nipped it in the bud.
Posted 9/5/2019 2:50 AM (GMT 0)

jb1994 said...
Well that is encouraging re: Bartonella. 2-3 years is a long time but then I've been treating since 2014 so I guess time flies when you're not having fun. I wonder what finally nipped it in the bud.

She did Rifampin plus a second antibiotic for prob a year or more. Prior to that - she treated lyme with a couple abx.
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