Lyme Progress #2 It Takes a Village
Moving Forward

Lyme Progress #2 It Takes a Village

Looking for the Light

After leaving my LYME Doctor in DC, I had to compile a team of doctors who could keep me well. This was not the easiest process. Here are the doctor’s I’ve met with so far.

General Practitioner

Endocrinologist

Internal Medicines

Cardiologist

One step I took with my GP is 30 minute appointments. I haven’t seen him in six years, trust takes time when you prescribing pain medication. I don’t have any issue paying for a double appointment, we’ve learned more about each other and the trust is almost 100%.

I still need to met with Neurologist and possible Pain Management.

I still see a Therapist and Psychiatrist. It does take a village.

M

 

 

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29 thoughts on “Lyme Progress #2 It Takes a Village”

  3. I am in year four. I love my GP. She has really helped to manage everything that has come about with Lyme disease. With me and my daughter. My daughter has had it affect her organs more than I have. But she cannot tolerate the treatment as well as I can. Thinking of you and hoping you keep moving forward. I know some days are just so much harder than others!!!!!!
    The only thing that truly helps me is the nutramedix herbal, cowden protocol. As soon as I get off it I crash and burn so I just stick to it

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    1. So good to hear from you. I didn’t realize your daughter also had Lyme, that must be very hard as a mother to watch. I started using cannabis oil last week, no change yet. Several of my blogging friends have used it with success for pain. It’s touch and go what to buy since Amazon has a ton to choose from. I chose one with 2500 mg and the most stars/reviews. It doesn’t taste as bad as I was expecting. Take good care of you self. I’m working on my next Lyme post, hopefully by Mon-Tues.
      :) M

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      1. It has been heart breaking. Truly heartbreaking. It affected her heart, killed her gallbladder, and her adrenals failed. So we are treating all of that and her immune system is still in the tank. It’s awful. I am having a harder time with her being ill than myself. I can deal with me. But watching her is very hard!
        I had a doc that prescribed cannibas oil and unfortunately it didn’t help me at all. Which I was SOO hopeful for. There were other strengths and brands but then I had 5 grand mal seizures, and had to be put on seizures meds. Since we are tweaking those, I have not tried it again. I know MANY who have found it to be life changing and I am really hoping it helps you.

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        1. We have to trust our gut and intuitions. Watching your child sick, very close to dying with the organ failures she’s had. I was very close to move the direction and decided that wasn’t how I wanted to go. I fired my doctor and working here the best I can with a team of doctors. Stay well. Prayers for your daughter.

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          1. The gallbladder was the worst! They just found the adrenal and her doc now is really good. On top of everything. We had to dump all of the bigwigs and go with an internal med doc who specialized in Lyme. We are finally getting somewhere treating all the coinfections like bartonella. I think she is finally moving forward but it’s been a long road. Thanks for the prayers. Really appreciate that!

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          2. I’m so glad you stopped her treatment when you did. I kept being told my Adrenal Gland was going to fail, all option others than death were not worth living for to me. That was the last straw with mine, they had me convinced I was going into adrenal failure. I feel so close and hopeful to her. Children can’t understand parents can’t. She must have a survival attitude. M

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          3. I think they were just killing her. When we went to the ER that year we went 32 total times because of her heart rate and dehydration. She lost 40 lbs. they had her on 3 antibiotics, injection antibiotics. The lyme and coinfections and treatment were all wayyy to much plus she was on herbals. Just too much.
            She isn’t producing cortisol at all so her adrenal glands are shot but she is on a replacement hormone for that, really has to be because she cannot function without cortisol. We tried herbals to help but after the last tests came back we said nope. The ER doc is the one that said STOP! EVERYTHING. So we did but the cortisol replacement and her heart rate is being treated because she developed POTS and her heart rate stayed in the 180’s.
            we are hoping she is on the upswing. I just have flares here and there that are awful but nothing like she is experiencing. Sounds like you have had similar to her. She is REALLY strong willed. I would have given up long ago had I been her!

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          4. Thank God she is strong and determined. She is several steps ahead of me health wise. I thanks God for saving me. I was on 9 months of IV Therapy and massive amounts of antibiotics. The additional medicine was driving me crazy taking so many pills and IV. :)

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          5. We contemplated the picc line for both of us but decided to do the injections of rocephin instead at the same dose so my husband gave them to us both at the same time. Poor guy. That plus flagyl plus augmentin we did those for 2 years and then boom the crash. I haven’t taken antibiotics since and neither has she but I do the cowden protocol. We also hired a nutritionist to boost our immune system and she added in monolaurin, collagen, vit c, d, spirullina, oh the list goes on and on. I am now just down to 4 of the cowden herbs and she is on nothing

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