UPDATE on treatment and some HOPE finally!

For those of you that don’t know my story here is a very quick recap:

I have been extremely ill for 6 years, essentially bedridden - My worst symptom is dizziness (which is an understatement) in the form of a 24/7 VIOLENT rocking sensation. I am unable to stand or walk without holding on, etc. and have intense spinning sensation in my head and frequent brain zaps, making it nearly impossible to contend with any stimuli - it is like I am a prisoner of my environment and body for 6 years. Bone-crushing fatigue, and so much more. For 6 years, I was diagnosed with Migraine Associated Dizziness. I tried countless migraine preventative - Anti-seizure meds, beta blockers, Calcium channel blockers, SSRIs, Tricyclics, all to no success. I continued to search for answers.

I finally learned about Lyme this January (the first page of this forum has a section “Other Illnesses and Conditions” if you wish to read about Lyme and my story in more depth). I began treatment end of January. I started very slowly. But, I eventually switched to a doc end of March who treats much more aggressively. As typical in Lyme treatment, you get worse before better as the bacteria is killed off. It was the hardest thing to continue to take all my pills everyday, watching myself get sicker and my body wither away and weaken further. I am treating Lyme, Babesia, and Bartonella, as MANY who have Lyme also have these coinfections.

I have finally noticed some gains for the first time in 6 years!!! For the first time in 6 years, my rocking sensation is less violent, such that I can finally feel the ground. I have been walking around my house all week, as I am just in shock to not have violent rocking. I never knew what my own floor at home felt like if that makes sense. I can now feel the floor again! My flu -like symptoms are also lessening a bit and brain zaps, blurry vision, and spinning in my head slowly improving. And, I was even able to play with my children. not run around with them of course, but be with them! and smile for the first time in years. Recovery from Lyme is a marathon and I have a long road ahead. It is also not linear. But, I am so grateful to have improvement after 6 years.

I will give an update again in a few months should this be ok with Scott.

Thanks for all the support here all these years!

Lisa

this is so wonderful to read Lisa!!! Fantastic news!!! I hope that things keep getting better and better for you- thanks for updating us and keep us posted on how things go. Wonderful!!!

I forgot- are you just taking pills or are you doing IV treatment also? I know IV is supposed to work faster…

Thank you. only orals now. I am doing many, though, and anti-malarials to cover all the infections. They are finding that high dose abx and combinations to treat coinfections oftentimes can be extremely effective even for neuro lyme

WOW Lisa! That’s amazing news. Your symptoms sound horrendous and I am so happy for you that you are finally getting improvements xx

Thank you so much, Jem! all the best to you as well

Lisa! At last! Can’t tell you how happy I am to read your post. I was so concerned about you lately because you’d gone so quiet and I was thinking of pm’ing you to see if you were OK, so it’s truly fantastic to read your post today. You must be thrilled to bits to get some respite and know you’re on the right road at long last. And to be able to interact with your kids -how fabulous is that. Bet hubby’s over the moon too. I know it’s early days but just seeing those first little improvements must have been indescribable and I couldn’t be happier for you. And yes, please make sure you let us know of further improvements. Today’s news is just the best. :smiley:

Brenda

Thank you for your incredibly kind message to me, and always writing me such lovely messages thorugh the years. yes, my husband is thrilled. Him and my parents are in awe watching me walk again. My mom was so tearful. happy tears finally! been a loooong time since they saw me walking without holding on, etc.

Oh Lisa. I am so so happy for u. U really deserve it. If only u had not been misdiagnosed for so long. Xxxx

Thank you so much, Lizzie. You’ve been a wonderful support to me

I’m delighted to hear that you are making progress Lisa! When you feel so desperate…as you certainly have over the last 6 years…it’s got to feel so very good! Keep going and stay strong :smiley:

Teddypan - thank you!!

Lisa
Such wonderful news - quite unexpected to hear that you are at last getting some results from your treatment I am just so happy for you and your family. You are an inspiration to us all to keep going, not to give up and persevere with finding the right meds for us.
Barb

Barb - thank you!! I very much appreciate your support through the years. You’ve always written me the kindest comments.

Hi Lisa, I was so happy to read your post! After so many years of terrible struggle it’s so wonderful to hear you’ve made progress and that you actually feel happy and have hope. It touched me that you said you smiled for the first time in years. I wish you continued improvement and lots more smiles.
Kind regards, Helen

Thank you very, very much, Helen!

This is wonderful news. So happy that you are beginning to make progress. Long may it continue x x x

thank you!

Wonderful News Lisa!!! Please keep us posted and thanks for giving us hope.

Thank you. I will definitely keep you posted