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NYVegasMom
New Member


Date Joined Apr 2018
Total Posts : 12
   Posted 4/11/2018 8:56 AM (GMT -6)   
Good Morning,

I'm so glad I found this forum, I've been reading for a few days now and found so much helpful information.
about a month ago, I saw my Infectious Disease doctor for the first time. I've been sick for years, probably actively sick since 2011. Extreme fatigue, joint and muscle pain (the wake me up at night kind), stiffness, HBP, asthma, etc. I was diagnosed with Fibromyalgia back in 2012, but honestly I never really took that seriously. about 12 to 18 months ago, I started having really bad, but on and off, pain in my right lymph node in my neck. Awful pain, I could not even lay on that side to sleep. I finally remembered to mention it to my GP a couple of months ago, and asked her to test me for RA and things like that. She ran a lot of tests and did an ultrasound of my lymph node. The tests showed that I had an old Epstein Barr virus (IgG positive) and my WBC were a little low. Also the ultrasound showed inflammation that looked benign. So to be safe, she sent me to hematology and infectious disease.
Hematology was fine. But my ID doctor's testing showed that I have Bartonella (B. Hensalae IgM positive, which my understanding is that means it's an active infection). She also thinks I have Lyme, although the first test was negative. They sent me for more blood work so they could do a Western Blot (i do not know where they send it) and I'll get those results next week.
I guess I'm confused by the "active infection" part of that. I haven't been exposed to cats in many, many years. I did have a very bad scratch from a stray cat back in my late teens, but I'm in my late 40's now. Can you have active Bartonella that many years later? Also, I never had mono, so the old Epstein Barr virus is confusing. Honestly this whole thing is a bit confusing, lol!
I live in Las Vegas for the past 3 years, but I'm from LI, NY where Lyme is common. I've been tested for it quite a bit, so I can't believe it would be missed so often if I truly had it. And would the Bartonella show as "active" currently when I've been sick for so long? Like I said, I've been actively feeling bad for about 7 years now, but honestly I was having enough joint pain in the 1990's to be sent for PT and neuro consults.
And would someone mind explaining what herxing is? I did look at the "New To Lyme" thread, I just didn't understand exactly what that particular thing was.
Thanks so much, I appreciate any input. Oh, and they put me on 100mg 2x daily Doxycycline for 28 days. Hasn't helped so far, but it's still early...
Thanks again!

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/11/2018 9:18 AM (GMT -6)   
Unfortunately testing for tick-borne infections really is that bad. Many people with Lyme have repeatedly tested negative.

Check this out:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5125990/

They looked at patients with EM (Bulls-eye) rash and/or culture positive confirmed Lyme compared against serology tests.

Check out the table and look at the Sensitivity. It is appalling! 30%-60% seems to be about the average. Might as well flip a coin.

I think you are very lucky you found an ID doctor that tested for Lyme and Bartonella. That doesn't seem to happen very often.

Herxing is the reaction of your body to a significant die-off of microbes in your body. I think Herxing ranges from an increase of the persons symptoms to feeling deathly ill. I haven't really herxed so hopefully others will chime in.

I had a run of Doxycyline and was not impressed with the results. My symptoms actually started coming back while on it. I responded better to other antibiotics much better: Minocycline, Ceftin, Flagyl etc..

I think that is the trick to effective treatment. I think co-infections play a major role in chronic infections. I think everybody has their own mix of pathogens they are carrying requiring different combinations of meds.

i think it is very common for people to carry these infections for a long time and not realize it.

I think you would be wise to be evaluated by an LLMD. I am so glad I did.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/11/2018 12:17 PM (GMT -6)   
NYVegasMom said...
Good Morning,

I'm so glad I found this forum, I've been reading for a few days now and found so much helpful information.
about a month ago, I saw my Infectious Disease doctor for the first time. I've been sick for years, probably actively sick since 2011. Extreme fatigue, joint and muscle pain (the wake me up at night kind), stiffness, HBP, asthma, etc. I was diagnosed with Fibromyalgia back in 2012, but honestly I never really took that seriously. about 12 to 18 months ago, I started having really bad, but on and off, pain in my right lymph node in my neck. Awful pain, I could not even lay on that side to sleep. I finally remembered to mention it to my GP a couple of months ago, and asked her to test me for RA and things like that. She ran a lot of tests and did an ultrasound of my lymph node. The tests showed that I had an old Epstein Barr virus (IgG positive) and my WBC were a little low. Also the ultrasound showed inflammation that looked benign. So to be safe, she sent me to hematology and infectious disease.
Hematology was fine. But my ID doctor's testing showed that I have Bartonella (B. Hensalae IgM positive, which my understanding is that means it's an active infection). She also thinks I have Lyme, although the first test was negative. They sent me for more blood work so they could do a Western Blot (i do not know where they send it) and I'll get those results next week.
I guess I'm confused by the "active infection" part of that. I haven't been exposed to cats in many, many years. I did have a very bad scratch from a stray cat back in my late teens, but I'm in my late 40's now. Can you have active Bartonella that many years later? Also, I never had mono, so the old Epstein Barr virus is confusing. Honestly this whole thing is a bit confusing, lol!
I live in Las Vegas for the past 3 years, but I'm from LI, NY where Lyme is common. I've been tested for it quite a bit, so I can't believe it would be missed so often if I truly had it. And would the Bartonella show as "active" currently when I've been sick for so long? Like I said, I've been actively feeling bad for about 7 years now, but honestly I was having enough joint pain in the 1990's to be sent for PT and neuro consults.
And would someone mind explaining what herxing is? I did look at the "New To Lyme" thread, I just didn't understand exactly what that particular thing was.
Thanks so much, I appreciate any input. Oh, and they put me on 100mg 2x daily Doxycycline for 28 days. Hasn't helped so far, but it's still early...
Thanks again!


Hello, NYVegasMom - I'm glad you found us here.

You can be exposed to Bartonella, and for many years your immune system can be handling it...and then when you have exposure to lyme, you're not able to keep it in check. Sometimes, it's not another infection, but a very stressful time in our lives that will cause the 'silent' infection to become active.

I believe I have been harboring Bartonella since childhood. I grew up with cats and had many bites/scratches

2013 was when I started to have symptoms, and one of my first ones was a swollen lymph node in my left clavicle area. I didn't know what it was...it was a hard, swollen and very sore lump.
My LLND identified it as a lymph node at my consult in 2014.
We can also have swollen lymph nodes with lyme - because generally with these infections, our lymph nodes are affected..

I am quite sure mine was from bartonella...as when I started bart specific treatment, I got another lymph node swelling behind my right ear.
Then several months later, the swelling of both went away...and haven't returned.

Do you have sore feet? Sore ribs? Nerve issues?

I'm impressed with your ID Dr. - considering she isn't lyme literate...she's done a good job so far.

Yes, the infection can be active for many years...until it's treated.

Herxing: When we treat the infections the die-off of the bacteria creates endotoxins that flood our system. These endotoxins create inflammation and result in a herxheimer reaction. That involves an increase in your current symptoms and/or new symptoms appearing.

What you can do to help with the herxing - is get on a good detox regimen. Start with a couple methods...and every few days add in another one.

100 mg twice daily of doxy isn't enough to treat bart unfortunately. This is why you will need a LLMD to treat you. Also, the testing may come back negative and you might want to consider testing through Igenex. They specialize in tick borne disease testing. The Lyme WB Igm and IgG costs $250.
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

NYVegasMom
New Member


Date Joined Apr 2018
Total Posts : 12
   Posted 4/11/2018 3:16 PM (GMT -6)   
Thank you so much Missouri and Girlie, I appreciate the info and explanations.

Girlie - yes, I have pretty bad foot pain, but no rib pain. I've also read knee pain is common, and I haven't had that either. Feet and ankles, hands and wrists, hips, shoulders, mid back. My pain is worse in the morning or if I exert myself too much of course. But I've been able to live a pretty normal life in spite of constantly feeling awful.
Oh, and the ID that I go to is listed as a Lyme specialist on LymeDisease.org, I haven't seen him yet just the nurse practitioner.
I go back to ID on the 17th and get my WB results. If they are negative but I'm being treated anyway, is it still important to get the Igenex test do you think? I'll ask them about increasing and/or changing meds too, but what do you think works best for Bart?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/11/2018 4:06 PM (GMT -6)   
NYVegasMom said...
Thank you so much Missouri and Girlie, I appreciate the info and explanations.

Girlie - yes, I have pretty bad foot pain, but no rib pain. I've also read knee pain is common, and I haven't had that either. Feet and ankles, hands and wrists, hips, shoulders, mid back. My pain is worse in the morning or if I exert myself too much of course. But I've been able to live a pretty normal life in spite of constantly feeling awful.
Oh, and the ID that I go to is listed as a Lyme specialist on LymeDisease.org, I haven't seen him yet just the nurse practitioner.
I go back to ID on the 17th and get my WB results. If they are negative but I'm being treated anyway, is it still important to get the Igenex test do you think? I'll ask them about increasing and/or changing meds too, but what do you think works best for Bart?


After starting bartonella treatment, I had a knee flare...it was stiff and sore for a few weeks...then slowly got better...I've also had the hands, wrists, shoulders, back...and fingers stiff and sore.
Exercise actually helps relieve that for me.

I wouldn't get the Igenex test if the LLMD you are seeing doesn't require it. Unless, of course you want it because you think you might need it down the road.

Well, the best antibiotics for bart is the fluoroquinolones - i.e. Ciprofloxacin or Levaquin. BUT, because they come with the FDA black box warning label for risk of tendon rupture and peripheral neuropathy, many of us don't want to take it.
Next best is Rifabutin...or Rifampin.
(paired with a second antibiotic)
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

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 230
   Posted 4/11/2018 4:07 PM (GMT -6)   
Bart is the primary cause of my joint pain. I used to assume Lyme (Borrelia) was the cause until seeing how my body reacted to antibiotics that target one or the other. Dr. Rawls gives a good intro on how to approach these infections. I didn't make much progress until I added herbs (Buhner) and a restricted diet to my treatment.

NYVegasMom
New Member


Date Joined Apr 2018
Total Posts : 12
   Posted 4/11/2018 4:26 PM (GMT -6)   
Thanks so much, I will check with them about the Rifampin and I'll also look into herbs and Dr. Rawls. I appreciate everyone's input!

NYVegasMom
New Member


Date Joined Apr 2018
Total Posts : 12
   Posted 4/11/2018 4:29 PM (GMT -6)   
Oh, actually, I forgot to mention the brain fog!! That is actually relatively new for me, but wow! I will literally be standing in front of an open cabinet wondering what it was I was looking for! It's almost funny. Do you all have that as well, and is that a Lyme or Bartonella thing?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 4/11/2018 4:49 PM (GMT -6)   
NYVegasMom said...
Oh, actually, I forgot to mention the brain fog!! That is actually relatively new for me, but wow! I will literally be standing in front of an open cabinet wondering what it was I was looking for! It's almost funny. Do you all have that as well, and is that a Lyme or Bartonella thing?


Yes. Many of us have that. Lyme and bartonella both can affect cognitive function, brain, and nervous system.
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