19 months and finally a diagnosis!

Posted , 7 users are following.

Hi guys! Wanted to check in with you all because this forum has been an absolute lifesaver for me.

Last week I finally decided to see a Lyme Literate doctor after getting 2 indeterminate Lyme tests.

*My backstory: July 2017 I fell really ill. Fainting, stiff neck, headache, lowgrade fever, canker sores on my throat, swollen lymph nodes, shaking, and extreme fatigue. After 5 weeks of docs and tests, I finally showed a positive mono spot test. Although my spleen and liver were fine, I took antibiotics and never got the rash. I started to recover three months later only to completely relapse after attempting exercise. Ever since I've been in this 'get a little better and then relapse for weeks' cycle.

I met with a very smart and very patient doc. My last Lyme test showed I was positive for Lyme. So while I may have had mono- the Lyme and different co-infections are what's wreaking havoc now. (HHV6, EBV).

I'm starting on Artemisinin now for a month and will meet with her again to talk about pulsing antibiotics. (I'm also on monolauren.) I also have been on a keto diet for 4 weeks and feel a bit better. It completely regulated my blood sugar which had been a problem. It also has brought my blood pressure up to 110/70 which is huge!

I have a big battle ahead of me and will probably move most of my updates to a lyme forum. I have a twitter account that I've been documenting from (MonoMom16) and I will check in here periodically too to see how you all are doing.

Don't give up seeking answers! If you feel like more is going on in your body, find a doctor who will listen. You know your body best. I refused to accept a chronic fatigue syndrome diagnosis. I knew there was something we just couldn't find yet. Getting a diagnosis is huge. It is such a relief to have a face to this monster. I'll be thinking about y'all and sending all my good healing juju your way! You are strong and resilient. You got this.

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  • Posted

    gosh 19 months ! i thought i was bad at a 5 months diagnosis ! cant believe that you ate still standing and so positive . i am slowly crumbling after 11 months and hoping this is over soon!

    good luck with everything and hope the medication works

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    • Posted

      Oh gosh Lori- I have had many many meltdowns. Feelings of complete hopelessness and bitterness. I had a pretty great life before getting sick- my career was finally getting somewhere after 15 years, I was doing yoga 4 times a week. We were super active with my kids. I still get so down sometimes thinking why me? But- if this has taught me anything it's that my state of mind is so temporary. So while today I may feel totally down and sick and just done, tomorrow may be a totally different story.

      After awhile I started googling success stories. I needed to hear how people recovered. And that helped a lot. I didn't feel so hopeless. Hang in there girl!! It'll take time but you will get there.

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  • Posted

    Hey Lisa,

    That was a really heartfelt and touching post, you have been amazing on this forum and taking the time to encourage and offer kind words for me and others despite the awful things you have been dealing with yourself this past 21 months or so. Just want to say thanks for all your support and encouragement for me Lisa, it has been wonderful and much appreciated.

    Very much hoping that the medication you are starting on can make a BIG difference in getting this Lyme under control - it sounds like the most dreadful thing to go through and getting mono and that over the same period I can only imagine how physically and mentally it must have been making you feel.

    I believe that getting this diagnosis, although a terrible blow and shock to deal with, is going to somehow be the start of the drawing of a line under the awful time you've been through lately and signal a turning point where your life and health improves Lisa. I really believe that, and have faith that God has got a great purpose and plans ahead for you and that involves you being in good health to be able to life a full, happy and healthy life - I know that might be hard to see or feel right now but I just sense that you're at the start of a real breakthrough and upturn, so don't be discouraged or frightened is the message - something is telling me you've already weathered and survived the worst and things will be moving forwards from here on. Definitely praying for that Lisa and still keeping you in my prayers.

    Hoping that there can be a good forum on Lyme that can offer some real hope, good advice and reassurance. And of course feel free to send a message to me any time you want to - you take care of yourself and thank you for your amazing words of encouragement for us all!

    Craig x

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    • Posted

      I will definitely stay in contact with you Craig! I think everyone here needs to you for their own sanity 😃 you bring much-needed hope! Yes – hoping to find a good lyme forum. I have quite a few people actually in my own community here in the PNW that have had lyme and beat it successfully. So that helps.

      After a decent week I am in my normal relapse – which is frustrating. So just taking it easy and waiting for it to pass. thank you again so much for tirelessly supporting all of us! I hope your weekend is a fantastic one!

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    • Posted

      I hope there can be a good lyme forum Lisa that you can find that can really help, just reading other people's advice and recovery stories can make such a difference. That sounds really encouraging about others who have beaten it so definitely draw hope and inspiration from that. These are the things that we really need to hear when going through tough time, about others who have faced the same and came through it safely and back to good health.

      Thanks for your kind words Lisa, oh believe me the forum is a help and very therapeutic for me too, I know how much help and encouragement I need in my life and others have given me, it's important we try and help each other that's for sure!

      Hope you have a good weekend Lisa and that you are feeling well and seeing some improvements with the new medication - yes for sure do keep in touch!

      Craig

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  • Posted

    Hey Lisa,

    I saw on your twitter blog that you are taking monolaurin and your viral counts have gone down. thats so cool! ive taken it in and off and am trying to take it more consistently. i was wondering if tou know what kind of amounts youve been using and how often?

    Glad to hear things are going alright for you.

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  • Posted

    Hey Nick! Yes! That and the keto diet are the only changes I made and I started to see some improvement. I take 600 mg twice daily (1200 total). At first my doc had me on 2400 mg and that made me really sick. So I backed down and I can tolerate this much. I'll probably stay on it long term since it can fight colds and the flu and Lyme. I can't believe I didn't take it in the beginning!

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