people who've recovered from Lyme -- what were your symptoms when you were sick?

sickoflyme123ct posted an interesting question recently asking people who have recovered whether certain symptoms went away. It made me wonder about the following question:

For those who have recovered (or if you know of other people who have recovered), what kind of symptoms did you have? (E.g., knee swelling? Neurological issues? Fatigue? Joint pain? Muscle pain? Persistent cough?)

What treatment(s) do you think ultimately helped the most? And how long since you've been better?

Every time I have doubts about whether Lyme and co are a cause of my symptoms, or whether improvement is even possible, it gives me comfort to read about other people who've gotten better. I hope that makes sense. Thank you.

Lily, I don't think you will find many responses to this because most people that are healed move on and don't post here much. I think Deejavu and I are currently the only ones that post the most often that have healed.

However, with it being a new year, the cured sometimes show up to give an update and that is so welcome.

My personal lyme file and journal are quite thick. My first symptom was a sore neck. Like I had slept on it wrong. It did not go away. A day later I got a head pain. Then a few days later, my ears were constantly feeling full as if I had gone up in elevation. My knees hurt. The symptoms just kept on coming and moving. I had so many, that it would take paragraphs. I googled each one and thought "ah ha" that's what I have. But, when you combine them all, it had to be lyme.

I did about 3 weeks of 2 antibiotics. I felt nothing from them. They were extremely hard on my stomach. I was nauseous and throwing up by the beginning of the 3rd week. They did absolutely nothing for any symptom.

I decided to do herbs and found an LLMD in my area that he and his wife had both had lyme and had cured. She had to do herbs so he was familiar with herbs. He started me on Beyond Balance MC-BB-1 and Tox Ease GL. In a week I was feeling relief and better. It was amazing!!! But, I was dang impatient and so I added in Buhner's protocol, Chapter 8 of his new Healing Lyme, 2nd Edition. This protocol in his book is different than the one on his website which is only 3 herbs. It actually is not his website, but he is consulted on it is my understanding.

My last herbs were in June of 2016.

So far I am doing super well. I have rules which I follow. I eat super healthy still. I still detox. I stay away from stress or drama situations as much as possible. I get adequate sleep. I don't overdo anything!!! Moderation and always mindful of what effect anything has on my body or mind.

Post Edited (PeteZa) : 1/9/2018 4:25:28 PM (GMT-7)

Thank you so much for these responses. I genuinely appreciate and respect that you (Deejavu and PeteZa) continue to post here despite having long ago recovered. It's so selfless and kind. And Lightlife, I hope that you continue to recover.

As I've posted recently, I've had some doubts about whether my symptoms are caused by Lyme. (I have pain/swelling in multiple small joints -- fingers, toes -- as well as overall fatigue, back/shoulder pain. There's also some sporadic discomfort in ankles, knees, wrists, and longstanding issues with dry eyes and dry mouth.)

I'm told that my symptoms are not common in Lyme patients and more likely to indicate an autoimmune disorder.

So it is interesting to me to see whether people have had similar symptoms that were, in fact, improved with Lyme treatment.

LilyPanda your DNA Connexions testing was positive for lyme.

Lyme is call the great imitator and so some doctors think it is something else.

But you have the test that says it is lyme.

Once my gf asked whats the symptoms ?...i listed mine for 1hr and a half ....she fell asleep pretending to listen. If it makes no sense baffles docs and is strange horrible things happening to every system with no rhyme or reason its lyme

I'm mostly healed. I never posted here much when I was sick, but I did read a lot and it helped me tremendously. My life is around 95% symptom free. My remaining symptoms are a ringing in my left ear, some eye floaters, and intermittent brain fog. I'm working on cleaning up my gut and detoxing to help let go of these remaining symptoms.

When I was sick, my WORST symptoms were joint pain in every joint (not even my pinky toes were spared), brain fog, distorted vision, depression, anxiety, sleep disturbance. Other lesser symptoms were numbness tingling, chest pains, paranoia (someone would creep down my hallway to get me at night), night sweats, feeling cold and weak, and probably some more that I have forgotten.

I took plenty of antibiotics and it was up and down with those. I tried herbals and still take Byron White and will for a long time probably. Adding essential oils was a positive step change for me, and learning to meditate got me through some nightmarish days and nights.

Seeing a counselor and healing old emotional wounds helped me get better physically. We are complex beings and everything is connected. Maybe the immune system is weakened by emotional pain we carry around. I can't explain it - I just know it helped me and is still helping me.

Hope that helps.

Cascades said...
My symptoms were joint, muscle and tendon pain in my legs, fluid on my knee and fatigue. I did a month of doxy followed by an electro-dermal scan and then a homeopathic blend. The doxy took away 75% of my symptoms but within a week of finishing it, they were all back. The homeopathic blend did the trick

Not herbs, but actual homeopathic? This is seldom merntioned.

Would you care to elaborate on what it was? Did a Natural Path Dr "brew it up", or was this some homeopathic remedy marketed for lyme?

thanks

People have discussed DesBios (homeopathy) for lyme and co's.


Found a thread on it:

/www.healingwell.com/community/default.aspx?f=30&m=3645903

And then there's the LDI which is similar to homeopathy, but it is much more diluted.

When I was diagnosed I had EXTREME fatigue and flu like symptoms (no rash). I was treated with a couple of weeks of amoxycillin and sent on my merry way. I realize now how lucky I was to have tested positive as soon as I got sick. I think the treatment I had (although not enough) kept me from getting SUPER sick like so many others on this site.

Not knowing any better, the following years I just thought I was getting old as I had bouts of fatigue, brain fog, headaches, etc. After researching I suspected that I never really got rid of the Lyme and finally found an LLMD covered by my insurance (thanks to Girlie!). At this point I had fatigue, headaches, lower back pain, eye/head pain that is hard to describe (brain fog/pressure behind eyes), dry eyes, trouble pulling words, memory issues and just an overall feeling of malaise all the time. Took a month of doxy and double doses of zithromax and boy did I herx. Did HLA testing and found out I have the lyme and mold gene (along with narcolepsy!) and that apparently my body has a hard time detoxing the bacteria, hence the misery during abx. They did help though and after that Doc put me on oil of oregano and turmeric with a bunch of other supplements and I have been doing pretty well overall. Still have bad days but having more good days than bad lately so I will take it.

I still have migraines but I think they are more weather related mostly. My doc suspects babesia but I don't have night sweats or air hunger so I don't think it's that.

What's most frustrating to me is unless you have/had lyme, people just don't get it. Just because I look okay doesn't mean I feel okay. I totally get Yolanda Hadid's book -'the invisible disability of lyme disease'.