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Posted 7/29/2018 2:54 PM (GMT 0)
Its hard to say definitely as I had long had little symptoms here and there, but things started to get worse with many accumulated symptoms in Feb 2014. Things remained about the same until around Nov 2016 when they got worse and since March 2018 I'm the sickest I've ever been. So, let's say 4.5 years.
Posted 7/29/2018 3:51 PM (GMT 0)

Mister Mike said...
Its hard to say definitely as I had long had little symptoms here and there, but things started to get worse with many accumulated symptoms in Feb 2014. Things remained about the same until around Nov 2016 when they got worse and since March 2018 I'm the sickest I've ever been. So, let's say 4.5 years.

darn - Mike - I didn't realize you've gotten worse in the past couple of years....

I do know about the symptoms that you are looking into now...but I thought that some of your other symptoms had subsided...so it was perhaps a saw-off.


...although - I have lost a ton of symptoms...and I sometimes feel just as sick as I was in 2013/2014 due to my worst one hanging on. Maybe that's the case with you.


I hope you get to the bottom of this one, Mike...and you feel better soon!
Posted 7/29/2018 4:34 PM (GMT 0)
Thanks Girlie! I really appreciate the kind words. Yeah, I definitely have lost some of the old symptoms, but now have much worse symptoms that took their place likely due to new CIRS exposure and Q flaring up big time. Although I've been dealing with this crap for ages now, this is truly the first time I've really really felt sick with new symptoms coming on daily it seems which are impacting my daily life much more than before. Makes me appreciate more acutely how bad others have had it. So, hopefully I can curtail this downward motion and start feeling better soon. It certainly isn't for the lack of trying! smile And I'm super grateful HW is still here for those of us who need it for various reasons. Thanks for all you and the others do here.

Despite your old worse symptom hanging on, I'm super psyched you lost so many other symptoms. You'll finish strong and kick Bart's butt I know it!
Posted 7/29/2018 5:57 PM (GMT 0)
I'm probably the baby of everyone here...Almost 8 months now. Got real sick suddenly while abroad in Korea Dec. 2017 with extreme fatigue, shortness of breath/air hunger, flu-like malaise, GI bloating/cramping/pain/nausea, muscle aches, insomnia, lack of appetite/loss of weight (since has passed), dizziness, head pressure, twitching, and other strange symptoms I've never had before. Finally diagnosed with lyme + possible confections in late march but more testing with (quest/igenex/galaxy/etc.) and a new LLMD (best one yet) finally gave me a dx of acute bart along with yersinia e and idiopathic MCAS due to the bartonella.

Started treating couple weeks ago with clarithro + rifampin combo along with detox support, thyroid/cortisol support, enzymes (serro/lumbro/NAC) for rifampin absorption, along with antihistamines for the MCAS and LDN for pain/fatigue.

I'm hoping this will work as I have to return to my work by 1/2019. They have been so understanding since I've never been really ill/sick my whole life of 28 years and a hard worker...they extended my disability much longer than I expected! So I'm hoping to recover by then enough to return back to work...LLMD is saying 4-6 months if I am diligent and careful with my regimen.

She also told me to have a positive attitude which is important for recovery. As long as many people on these forums and others have been sick, it does not represent the patient population that have made full recoveries which are very numerous as she has seen. The people who are sick here are only a small subset of the many who have already kicked the disease and are back to their normal lives. I mention this not to put you guys down but to say that there are so many people outside of these forums that have found healing and hoping all of you (including me) will find it soon!
Posted 7/29/2018 9:46 PM (GMT 0)
Walkingbyfaith, "the needle in the haystack" is the best description you could give. I've done that for 30 yrs. Always looking for the missing link, magic diet, or missing supplement. I always suspected Lyme but was told it wasn't in Florida. Well....they were wrong smile
Posted 7/29/2018 11:07 PM (GMT 0)

xpeetzax said...
I'm probably the baby of everyone here...Almost 8 months now. Got real sick suddenly while abroad in Korea Dec. 2017 with extreme fatigue, shortness of breath/air hunger, flu-like malaise, GI bloating/cramping/pain/nausea, muscle aches, insomnia, lack of appetite/loss of weight (since has passed), dizziness, head pressure, twitching, and other strange symptoms I've never had before. Finally diagnosed with lyme + possible confections in late march but more testing with (quest/igenex/galaxy/etc.) and a new LLMD (best one yet) finally gave me a dx of acute bart along with yersinia e and idiopathic MCAS due to the bartonella.

Started treating couple weeks ago with clarithro + rifampin combo along with detox support, thyroid/cortisol support, enzymes (serro/lumbro/NAC) for rifampin absorption, along with antihistamines for the MCAS and LDN for pain/fatigue.

I'm hoping this will work as I have to return to my work by 1/2019. They have been so understanding since I've never been really ill/sick my whole life of 28 years and a hard worker...they extended my disability much longer than I expected! So I'm hoping to recover by then enough to return back to work...LLMD is saying 4-6 months if I am diligent and careful with my regimen.

She also told me to have a positive attitude which is important for recovery. As long as many people on these forums and others have been sick, it does not represent the patient population that have made full recoveries which are very numerous as she has seen. The people who are sick here are only a small subset of the many who have already kicked the disease and are back to their normal lives. I mention this not to put you guys down but to say that there are so many people outside of these forums that have found healing and hoping all of you (including me) will find it soon!

Your doctor seems to know her stuff about bartonella. I would feel confident. You'll get there
Posted 7/29/2018 11:51 PM (GMT 0)

xpeetzax said...

She also told me to have a positive attitude which is important for recovery.

Thanks for the reminder! It's hard to keep that attitude when treatment isn't working or relapses occur, as happens to many on this forum.

xpeetzax said...

As long as many people on these forums and others have been sick, it does not represent the patient population that have made full recoveries which are very numerous as she has seen. The people who are sick here are only a small subset of the many who have already kicked the disease and are back to their normal lives.

This is good to point out for new members and those with recent acute infections caused by tick bites.

However, this is not a comforting realization for those, like me, who most definitely are members of this small, elite subset. I fear that doctors, researchers, and advocates are too content to do what works for many and ignore, abdicate, or hinder the work that remains in determining WHY this subset of people are still sick and unable to recover or relapse after they do.

There is a bigger story beyond the proverbial "Lyme disease transmitted by a known tick bite" that should never be forgotten. That story has mysteries yet to be solved, and those precious people have lives that are shattered, bodies that are broken, and pain and suffering that needs to be healed. We must not be forgotten. Be sure to tell your doctor that.
Posted 7/30/2018 1:04 AM (GMT 0)

WalkingbyFaith said...


This is good to point out for new members and those with recent acute infections caused by tick bites.

However, this is not a comforting realization for those, like me, who most definitely are members of this small, elite subset. I fear that doctors, researchers, and advocates are too content to do what works for many and ignore, abdicate, or hinder the work that remains in determining WHY this subset of people are still sick and unable to recover or relapse after they do.

There is a bigger story beyond the proverbial "Lyme disease transmitted by a known tick bite" that should never be forgotten. That story has mysteries yet to be solved, and those precious people have lives that are shattered, bodies that are broken, and pain and suffering that needs to be healed. We must not be forgotten. Be sure to tell your doctor that.

You are absolutely right. I definitely will let her know that and you guys definitely are not forgotten. There are doctors out there working hard to find out how to get to the bottom of this small subset as well! And hopefully as more research is done in this area more solutions will continue to surface. =]. I am so sorry...can't even imagine all the pain you have went through physically/emotionally/spiritually from years and years of frustrating illness and relapses. When I do manage to recover fully (hopefully), I intend to become an advocate for these horrible diseases that has destroyed lives and I think they need to start looking more at the smaller subsets of people who don't seem to be recovering....and also doctors who are persistent advocates for their patients. Hang in there! Healing is coming soon one way or another!
Posted 7/30/2018 1:13 AM (GMT 0)

xpeetzax said...

WalkingbyFaith said...


This is good to point out for new members and those with recent acute infections caused by tick bites.

However, this is not a comforting realization for those, like me, who most definitely are members of this small, elite subset. I fear that doctors, researchers, and advocates are too content to do what works for many and ignore, abdicate, or hinder the work that remains in determining WHY this subset of people are still sick and unable to recover or relapse after they do.

There is a bigger story beyond the proverbial "Lyme disease transmitted by a known tick bite" that should never be forgotten. That story has mysteries yet to be solved, and those precious people have lives that are shattered, bodies that are broken, and pain and suffering that needs to be healed. We must not be forgotten. Be sure to tell your doctor that.

You are absolutely right. I definitely will let her know that and you guys definitely are not forgotten. There are doctors out there working hard to find out how to get to the bottom of this small subset as well! And hopefully as more research is done in this area more solutions will continue to surface. =]. I am so sorry...can't even imagine all the pain you have went through physically/emotionally/spiritually from years and years of frustrating illness and relapses. When I do manage to recover fully (hopefully), I intend to become an advocate for these horrible diseases that has destroyed lives and I think they need to start looking more at the smaller subsets of people who don't seem to be recovering....and also doctors who are persistent advocates for their patients. Hang in there! Healing is coming soon one way or another!

Thank you for that kind encouragement. I pray you will manage treatment easily and without complications and will make a full and lasting recovery.
Posted 7/30/2018 8:23 AM (GMT 0)
They are absolutely wrong. I got infected May 2004 in Orlando, FLA.
Posted 7/30/2018 7:37 PM (GMT 0)
1.5 years, I guess im a newbie around here. "Sick" Feb 2017 (but as others have said, symptoms were definitely there, I just didn't realize it/pushed through it). Diagnosed June 2017. Been treating since. At my worst I was 30%; At my best, 90% last month. Sitting at about 80-85% right now.

I am able to work full time, married with 3 kids. I just suffer through most days and try to be thankful for anything positive I have in my life.

I will say... this disease had made me slow down and appreciate things I took for granted... and I hope one day, when I'm better (which will happen, to me, and all of us) that this will have made me a better, stronger person. I just understand now that Better doesn't mean exactly how I was before - that just isn't realistic. To me, being better is simple - going through an entire day, week or month without thinking about being ill.
Posted 7/30/2018 7:59 PM (GMT 0)
5 1/2 years sick. Treating just over 4 years but darn if it doesn't feel like forever.


Really sorry to hear that you are feeling so poorly Mike.
Posted 7/31/2018 2:32 AM (GMT 0)
7 years for me. My first year was the worst because I didn't know what I had and every symptom felt like that was my last day on earth.

Ever since I self diagnosed and began treatment I have gotten 70-80% better. I have relapsed down to 20% a few times, but with the knowledge that I have learned and this forum, I am usually able to go back to the 70-80% in a few weeks.

The remaining 20% is damage done to my body and Endo symptoms that I can't find a way to treat yet.
Posted 7/31/2018 11:54 AM (GMT 0)
@Healing98, how long have you been treating yourself? Are you able to work or anything?

jrpsf, have you hopefully made progress in this many years lf treatments?
Posted 7/31/2018 1:37 PM (GMT 0)

Aerose91 said...
@Healing98, how long have you been treating yourself? Are you able to work or anything?

jrpsf, have you hopefully made progress in this many years lf treatments?

I have an LLMD and have not missed more than a day due to Lyme illness. I have taken half days off to go see a doctor or to visit my local Emergency room, but I've been lucky that I can still work.
Posted 7/31/2018 1:38 PM (GMT 0)
I was bit in Summer of 2016. But I was having issues since a stray cat gave me an infected bite in 2012. Heavy symptoms started appearing a couple months after the tick bite. And I became unable to work in November 2017.
Posted 7/31/2018 2:45 PM (GMT 0)

Hoagie said...
I was bit in Summer of 2016. But I was having issues since a stray cat gave me an infected bite in 2012. Heavy symptoms started appearing a couple months after the tick bite. And I became unable to work in November 2017.

Did the tick give you something other than bartonella
Posted 7/31/2018 4:46 PM (GMT 0)

Aerose91 said...

Hoagie said...
I was bit in Summer of 2016. But I was having issues since a stray cat gave me an infected bite in 2012. Heavy symptoms started appearing a couple months after the tick bite. And I became unable to work in November 2017.

Did the tick give you something other than bartonella


I believe I received bart from a cat bite several years ago. The tick gave me borellia, Ehrlichiosis, babesia, and Mycoplasma.
Posted 7/31/2018 5:16 PM (GMT 0)
diagnosed nov, 2016.
Posted 8/1/2018 3:16 AM (GMT 0)

Hoagie said...

Aerose91 said...

Hoagie said...
I was bit in Summer of 2016. But I was having issues since a stray cat gave me an infected bite in 2012. Heavy symptoms started appearing a couple months after the tick bite. And I became unable to work in November 2017.

Did the tick give you something other than bartonella


I believe I received bart from a cat bite several years ago. The tick gave me borellia, Ehrlichiosis, babesia, and Mycoplasma.

Does mycoplasma get transmitted by cat's alongside bartonella? I have myco, too
Posted 8/1/2018 6:57 PM (GMT 0)
"Gosh - reading these posts is heartbreaking - so much suffering we have endured.. it’s criminal" - GIRLIE ...

I couldn't agree more </3 ! I'm not even sure now how many years as I'm just learning about Lyme and perhaps why I've been a wreck for so long but managed! I know this last few years I guess I'm on that downslide to H. and Girlie you are right it IS criminal that given SO MANY PEOPLE here who you can have hardly a DOUBT are sick , blood test positive or NOT , that the CDC and the regular medical community still make it all but impossible for it to be a legitimate disease !!!!! "it must be your 'depression' ... " UGH.
Posted 8/7/2018 3:41 AM (GMT 0)
Sick 6 years
Posted 8/7/2018 5:35 AM (GMT 0)
Don’t know if I am in this group. Im assuming 12+ years it could have been before that. Things got progressively worse fast. Lyme was never considered. Diagnosed with autoimmune diseases. I’m assuming I’ve seen 30+ doctors but probably more. Things got worse. Got disabled, lost almost all my friends. Staying with family. Pain increased and knee problems over night. Primary dr said it was fibro. 5 years ago I started paying a thyroid specialist out of pocket. He is amazing. As he watched my health actually decline he adjusted meds. Ran into anemia, D not raising and other deficiencies. I worked to fix those. To tired to go to the gym. We had got me to start sleeping. I’m on enough meds I should be hyper. Then I started having odd flares. One in particular was a month for drinking stevia. My specialist said “it’s Lyme” from years of symptoms. Insomnia went to sleeping 12-14 hours a day with naps. Got diagnosed on 7/24/18. Now I’ll find a dr or use herbs to treat (if the 21 days of antibiotics doesn’t clear this).
Posted 8/7/2018 7:02 AM (GMT 0)
Ive been sick, or that is to say, that 1st symptoms began 2004....began treating in 2014!!!
Posted 8/7/2018 11:33 AM (GMT 0)
Mcspike- what was your level of function when you started treatment
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