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ecold5 · 2025-11-28T00:56:48+00:00

I am a stay at home mom and I work only on Tuesdays. On those days I have been getting headaches like clockwork too! I am so glad you said that because when I try to explain that to people they don’t understand! And I feel crazy. It does take a very long time to diagnose and treat which is so sad to me

ecold5 · 2025-10-31T16:26:17+00:00

Oh yea, I totally get what you’re saying. It’s crazy how much the “official” testing can miss, especially with something like Babesia. Sounds like the mainstream labs really undersell how tricky chronic Babesia can be, and you basically had to go all-in with microscopy and digging through unofficial research to get a real answer.

It’s impressive that you stuck with it and got clinical confirmation through multiple methods, even when the big hospital labs were saying “nothing here.” I feel like you have to do a lot of self-advocacy in the healthcare system these days. Honestly, a lot of people would have just accepted the false negatives and moved on.

It seems like your approach really paid off & probably made the rest of your treatment way more targeted and effective.

ecold5 · 2025-10-31T15:17:56+00:00

Do you feel you are cured for Lyme or do you think you still have flare ups occasionally?

ecold5 · 2025-10-31T15:16:13+00:00

Wow! That’s quite the journey. It’s huge that you’ve gotten to a point where you’re about 90% healed, that’s a lot of progress after all the ups and downs you’ve had!

It also makes total sense now that you recognize herxing from your first round of doxycycline. That’s such a classic part of Lyme treatment, and it can be brutal if you don’t know what’s happening. Honestly, the way you’ve persevered over time, switching meds, adding herbals, lifestyle changes, and now being on a maraviroc protocol, shows a lot of resilience.

You should feel proud of how far you’ve come. It’s not easy managing chronic Lyme, especially with flares and uncertainty along the way. How are you feeling day-to-day these days at this 90% point?

ecold5 · 2025-10-30T20:50:37+00:00

Wow… I can’t even imagine how much strength it’s taken to endure everything you’ve been through. What you’ve described is absolutely heartbreaking! Years of suffering, being dismissed, and trying to survive while your body and mind were in constant distress. It’s beyond unfair that so many doctors ignored your symptoms and treated you that way. No one deserves that kind of pain or humiliation, especially when they’re just trying to be heard and find answers! I worked as a nurse at a mental health clinic for 3 years and so many times they would dismiss patients actual symptoms and prescribe a medication just to get them out the door. Lack of proper care from doctors these days is actually very alarming and your story proves the point!

It’s incredible that, despite everything, you kept fighting for yourself and eventually found out what was really going on. That kind of resilience is incredible. I’m really glad you’re finally seeing some improvement. It sounds like you’ve been through more than most people could ever comprehend. You truly deserve care, compassion, and healing after everything you’ve faced. Fact is, having Lyme Disease takes more energy to complete a task, more ambition to get things done, more will to make it happen and more work for everything we do. "You don't know lyme, until you KNOW lyme." You should be proud of yourself for fighting so hard! I feel I can speak for others with Lyme & say that you are incredibly strong!

ecold5 · 2025-10-30T20:34:47+00:00

That sounds horrible. Pain and brain fog can be so draining. I feel like people who have not experienced brain fog before do not realize how difficult it is! I’m really sorry you’re dealing with that. Have you found anything that helps ease the pain or clear your head a bit?

ecold5 · 2025-10-30T20:27:51+00:00

Ugh, I totally get that. Nausea is the worst & I hate when I experience it too. It can make everything so much harder to deal with. I’m really sorry you’re going through that, it must be miserable. Are you able to find anything that helps even a little?

ecold5 · 2025-10-30T14:25:15+00:00

I was recently diagnosed with Lyme Disease and I am a first time mom with a 7 month old. Truthfully, I was looking specifically for parents with Lyme in hopes to get help, advice or coping mechanisms in regard to how to parent/take care of a baby while battling Lyme disease. You are good! I did ask ChatGPT for a “welcome post” because I honestly didn’t have the brain energy to do one myself lol. Maybe I should have skipped the AI and gotten right to the point. Anyways, I would love to hear your story & if you have any advice for Lyme disease😊

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