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

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LilyPanda
Regular Member


Date Joined Jun 2016
Total Posts : 55
   Posted 1/9/2018 8:41 AM (GMT -6)   
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.
Started herbal treatment for Lyme in early 2017. Did 1 month of doxy Aug. 2017; started doxy again Jan. 2018. Uncertain about diagnosis b/c tests have been iffy, and my symptoms (dry eyes/mouth, finger joint pain/swelling) look like classic autoimmune issues. DNA Connexions test showed Lyme, babesia, ehrlichia. Rheumatologist doesn't believe in these test results.

Lightlife
Regular Member


Date Joined Jan 2017
Total Posts : 185
   Posted 1/9/2018 10:13 AM (GMT -6)   
Short on time / short answer:
I had a lot of symptoms. No positive . Neuro joints fatigue brain fog digestive hot feet, only three days of night sweats, major twitchIng all over... numbness ,strange sensations, vertigo, off balance . All over 15 years time. They come and go do it makes you question what it is. You attribute to other things. I did. Currently treating w herbs. Mostly symptom free at moment. More treating/ digging to do. Believe tests not believe rhumatologist.

Post Edited (Lightlife) : 1/9/2018 9:42:34 AM (GMT-7)


PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/9/2018 10:35 AM (GMT -6)   
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)


Deejavu
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Date Joined Aug 2005
Total Posts : 4429
   Posted 1/9/2018 4:40 PM (GMT -6)   
Hi LilyPanda,

I had the non-productive cough, extreme fatigue, low-grade fever, aches and pains, the most severe pain I had were in my legs (felt like tiny knives inside my legs). I also lost the ability to walk for several months.

I first tried Doxy but that made me sick to my stomach so I stopped that on my own. I then tried colloidal silver (didn't feel any better). Then I tried Nutramedix Samento and another product by Nutramedix. Still no difference.

I knew a group of people who were having great results from Dr. Jernigan's protocol so I said to myself what do I have to lose? So I bought Dr. David Jernigan's book called "Beating Lyme" and followed his protocol from his book. I felt amazing right away which shocked me! To this day I don't completely understand (I understand about 75%) why his botanicals worked for me but hey, I don't look a gift horse in the mouth.

Also, I learned that detoxing was just as important as taking the botanicals. Thus I got in the habit of dry skin brushing, taking detox baths, coffee enemas (yes I know, yuck!), doing internal cleanses such as liver/gallbladder cleanse, etc.

Like PeteZa I have rules for myself such as eating as healthy as I can and being very aware of my stress levels. I changed my life around at one point just to lower my stress which worked out great!

Hope this helps,
Denise
12 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine (used Borrelogen, Microbojen and Neuro-Antitox).

I still detox even though healed and drink Green Vibrance. I come back to help others for others helped me when I was sick. Pay it forward! smile

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

LilyPanda
Regular Member


Date Joined Jun 2016
Total Posts : 55
   Posted 1/10/2018 7:40 AM (GMT -6)   
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.
Started herbal treatment for Lyme in early 2017. Did 1 month of doxy Aug. 2017; started doxy again Jan. 2018. Uncertain about diagnosis b/c tests have been iffy, and my symptoms (dry eyes/mouth, finger joint pain/swelling) look like classic autoimmune issues. DNA Connexions test showed Lyme, babesia, ehrlichia. Rheumatologist doesn't believe in these test results.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 1/10/2018 11:53 AM (GMT -6)   
LilyPanda said...




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.


I'm not fully healed yet, but do want to comment.

Whoever told you that your symptoms aren't common in lyme patients doesn't know what they're talking about. Anyone can look them up via google and see they are.

pain/swelling in joints is VERY common. I didn't have swelling, but I had bad pain for awhile in my fingers.
It came on after treatment started - I think it was bartonella.
Fatigue is a hallmark symptom of lyme. ( I don't have it though)

Back/shoulder pain - I have those symptoms, too.

And I had dry mouth.

Lyme is OFTEN misdiagnosed as an autoimmune disease because of the symptoms it shares with them.

Don't let that deter you from getting treatment.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/10/2018 12:36 PM (GMT -6)   
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.

Lightlife
Regular Member


Date Joined Jan 2017
Total Posts : 185
   Posted 1/10/2018 9:08 PM (GMT -6)   
Be aware:

Those are all common Lyme symptoms. I had everyone. Including dry eyes... small finger joints is where my joint issues began.. ankles, wrists- all very sporadic and migratory( come and go/ move around)

Back and neck pain- common to Lyme and coinfections ..

Those symptoms are all not just common, but VERY common.

The info you are getting about those symptoms is incorrect.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4721
   Posted 1/11/2018 3:05 AM (GMT -6)   
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4721
   Posted 1/11/2018 3:07 AM (GMT -6)   
Please dont do what the rhuemy says,clear the pathogen that causing the immune response not suppress it . ....bvt and rife with iv abx got me back to work in 2yrs from als type symptoms

Norcross111
New Member


Date Joined Aug 2016
Total Posts : 11
   Posted 1/12/2018 11:23 PM (GMT -6)   
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
New Member


Date Joined Nov 2017
Total Posts : 15
   Posted 1/17/2018 6:18 PM (GMT -6)   
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

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 1/18/2018 10:33 AM (GMT -6)   
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

Cascades
New Member


Date Joined Nov 2017
Total Posts : 15
   Posted 1/18/2018 12:31 PM (GMT -6)   
I live in central MN, one of the Lyme hot zones. I had heard a lot about this doctor, he is a chiropractor . When I first saw my primary care doctor who is an Internist and a DO, she said that protocol would only let her treat me with 4 weeks of antibiotics and if it came back, which is did, protocol would not let her retreat me and she would refer me to a doctor in Staples , MN or Walker, MN. I was familiar with both, the one in Staples treats with antibiotics and is not taking new patients, 200 on his waiting list. I started asking around about the one in Walker, talked to a number of Lyme patients that had great results. One gal had been working with a LLMD for 9 years, using antibiotics but didn't get well until she went to Walker. Another had been sick for 3 years, did not know what was wrong with her, tried Mayo clinic, no luck. She went to Walker, MN and was diagnosed with Lyme, was treated and is doing well. He is a chiropractic doctor, who uses Electro-Dermal testing, I tested positive for two different bacteria . He gave me a homeopathic blend that I believe he makes up, 10 drops under tongue morning and night. He told me it could get worse before it gets better which is not unusual with homeopathy, and that it might take 2-3 months, I was great at 6 weeks. The woman who had been sick for 9 years told me it took her 6 months before she started noticing improvement but she was in a wheel chair by that time she started treatment. It seems like many people in my area have seen this doctor. Actually I had to see his daughter because he is so booked out but I do have a follow up appointment with him in April.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 1/18/2018 1:06 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/18/2018 3:28 PM (GMT -6)   
My acupuncturist does electro dermal testing (EDT) also. He is amazing.

I was allergic to strawberries, corn and tomatoes. He made it so I was no longer sensitive to those things. He gave me homeopathic drops for my sinuses when I was working around a golf course and could not handle the cut grass.

Amazing stuff the homeopathics.

You are very fortunate and this is the 2nd time I have heard about this doctor. So good to know.

Raleighgirlie
Regular Member


Date Joined May 2017
Total Posts : 140
   Posted 1/18/2018 9:22 PM (GMT -6)   
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'.
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