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Lyme since August! what would you do?

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Posted 1/8/2021 10:36 AM (GMT 0)
Hi again! I wanted to do an extended post about my lyme journey and see what you guys think about it. I really appreciate everybody who answers and I'm really glad that I have found this forum! smile
So... I've been diagnosed with Lyme last summer in August due to an eritema migrans. I've done amoxicillin for 21 days (I'm breastfeeding) I was asymptomatic until that. I had mostly neurological symptoms. (Brain for, muscle spasm, cold/warm sensations in different parts of my body, numbness, pulsations from my head to the rest of the body, needle feeling also all over my body, hand and feet pain) So after amoxicillin the symtpoms were lower.I started with cat's claw, Japanese knotweed and eleuthero, also supplements. I've done analytics and TSH was 0.01, high ammonia and homocistein, high cd57+ levels, EBV ebna igg positive, EBV VCA igg positive. All of the rest was good. I repeated analytics after a month and TSH and thyroid hormons were all ok. Homocistein lowered also but still high. I started having blurry vision, feet pain and sensation of like boiling water inside me also vibrating sensation in hands and feet. I started with astragalus and muscle pain, spasm and brain fog started again. Blurry vision disappeared. I'm doing now small doses of astragalus and I feel better than with high doses. I also have tinnitus and floaters since 14. I had anxiety and depression since 14 yo to 18yo. What do you guys think ? I'm really afraid that I'm doing something wrong. I want to wean my baby but we are still in the weaning process and it's so hard for both of us. What would you do if you were me? I also take smillax, do epsom salt baths and drink a lot of lemon water.
I would say my symptoms are mild.
Posted 1/8/2021 12:04 PM (GMT 0)
Hey there...I really think bicillin LA (has to be used by itself w/ no other antibiotics) is the lowest hanging fruit for a neuro-lyme problem like this. Sounds like your biggest problems are neuropathy like me. The buzzing and feet pain is called small fiber neuropathy. the spirochetes trigger inflammation which affects the nerves. For whatever reason it seems that people like us, who have had these neurological symptoms like anxiety, depression, ocd, tinnitus, before, are much more vulnerable to more neuro symptoms upon infection. I think it's an immune response. If you cant clear the neuropathy by treating lyme, IVIG can help. Where are you located?
Posted 1/8/2021 12:32 PM (GMT 0)
Thank you for answering! :D First time I hear about that. Yes! My biggest problemas are neurpathy but I was almost symptoms free until taking astragalus. I only had the floaters, tinnitus (which i had before Lyme) blurry vision and that buzzing in hands and feet. I thought it could be bartonella. I live in Spain. I will investigate more about it!
Posted 1/8/2021 12:54 PM (GMT 0)
Wait the astragalus triggered your neuropathy? You didnt have it before that?
Posted 1/8/2021 1:03 PM (GMT 0)
Symptoms I had (recently) before taking astragalus:
- blurry vision
- hand, feet pain
- buzzing/vibration in hands and feet
After astragalus:
- muscle spasm/pain
- Brain fog
Plus that one's mentioned before taking astragalus. Less blurry vision, less floaters and the feet pain is not so bad. :/
Posted 1/8/2021 1:28 PM (GMT 0)
You have an auto-immune type inflammation problem. I hate herbs that up-regulate the immune system when you have neuropathy. imho, as someone who has dealt w/ this autimmune neuropathy, you should stay away from things like astragalus or echinacea. I've not had much luck w/ herbs in general for this, all seem to make it worse tbh
Posted 1/8/2021 1:55 PM (GMT 0)
People have told me it could be a herx. I did a recent post about astragalus. I really don't know what to do... it feels like I'm looking for answers all day long and I can't find anyone. It's so depressing since I'm an "early stage"...
Posted 1/8/2021 2:18 PM (GMT 0)
Skadi97,

From what you described as symptoms and what you experienced in your teens, it sounds like you may also have bartonella.

You may have had bartonella alone in your teens and then got Lyme when you got the bullseye rash. It is also possible that you had Lyme in addition to bartonella in your teens without the bullseye rash and pregnancy or childbirth triggered a lowered immune response and symptoms. Some people can have these infections for years and be asymptomatic or only mildly symptomatic until something occurs that shifts the immune system and the infections get an upper hand. Trigger events could be undue stress from a divorce or job loss, surgery, onset of menstruation/pregnancy/childbirth/menopause, other acute infections like a respiratory infection or strep, exposure to toxic mold in water damaged buildings, dental infections like a root canal, heavy metal toxicity, etc or any perfect storm combination of such things.

Do you have access to an LLMD (Lyme literate medical doctor) who follows ILADS guidelines?
Posted 1/8/2021 2:21 PM (GMT 0)
As far as treatment with herbs, I would suggest adding houttuynia for the suspected bartonella. You can also add other herbs for immune modulation - Chinese skullcap and/or Red Sage (danshen) depending on how you respond to each. Cordyceps is good as well if you tolerate mushrooms.
Posted 1/8/2021 2:26 PM (GMT 0)
bicillin is a great drug for this, i would look into it. it likely will calm your immune system, not up-regulate it like some of these herbs can. also the biggest help for me w/ this neuropathy has been a ketogenic diet
Posted 1/10/2021 12:17 PM (GMT 0)
Thank you to everybody who answered smile I do have an LLMD but not happy at all with them... I'm trying to find another one who really know what is doing. I do feel improvement from the herbs I'm taking right now but I feel I need to take more of them for the possible co infection as you mentioned before. My experience with abx are not good though but I will keep that in mind if I feel really bad. All of my symptoms for now are mild and they come and go. I didn't have all of that symptoms I'm mentioning in my post for a long time. Only 2 weeks or so. They come, then they go away. New ones start... So if you know any good LLMD who could put me on the right treatment while breastfeeding (We are still in the weaning process) please send me an email! It would be so helpfull for me ♡ Thank you!
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