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springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2160
   Posted 1/2/2018 11:43 AM (GMT -6)   
Hi everyone -

I was a frequent visitor here and once a moderator. Both my husband and I have chronic lyme.

Back when my husband was very ill (2011), my son (12 years old at the time) showed me a bullseye and almost sent me over the edge. We got him treated with 4 months of doxy and that was that.

Fast forward 5 years, last September, he started having shortness of breath issues. Tested for all allergies, sinus, lung, all negative. Back of my mind was the 5-year rule with lyme but he had no other symptoms. Now, a year later, he goes off to college and starts with brain fog, depression, anxiety, etc.

Take him back to lyme doctor and what do you know, lyme positive. However, dr. is saying it is a new infection. This dr is very nice but not totally up to date on lyme. He did use good lyme lab and test for coinfections (which were negative) but he is saying since only IGM is positive and not IGG that it is a new infection.

I don't agree and have yet to speak with MY lyme doctor but anyone have any feedback?

He is back on treatment and I will be researching who to take him to next. Brain MRI and EEG were also fine.

God help me. Here we go again.

Thanks in advance. confused
Prior moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta, Prior meds: bactrim, doryx, amantadine, amox, minocycline, tetracy, roxithyromycin. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, cats claw
FEELING GREAT THESE DAYS! Hang in there - it does get better.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2501
   Posted 1/2/2018 11:58 AM (GMT -6)   
What lab?

I have had same bands on IGM & IGG since 2015 (IGeneX). They have not transferred over to IGG so clearly the "current" infection rule of IGM does not apply to lyme disease. Maybe because we never really get rid of it and the immune system is always fighting to some degree.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/2/2018 12:18 PM (GMT -6)   
Hi Springsjean!!! While I'm happy to hear from you again, I'm so very sorry for this news!!!! Ugh!! The never ending circle of Lyme!!!

As you know, testing really s*cks. We carry antibodies after having been infected with Lyme for the rest of our lives, so I'm not sure there is a way to tell if it's a relapse or if it's a new infection. I'd say, keep your mind open to both possibilities.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Charlie55
Regular Member


Date Joined Nov 2017
Total Posts : 68
   Posted 1/2/2018 12:20 PM (GMT -6)   
springsjean said...

Take him back to lyme doctor and what do you know, lyme positive. However, dr. is saying it is a new infection. This dr is very nice but not totally up to date on lyme. He did use good lyme lab and test for coinfections (which were negative) but he is saying since only IGM is positive and not IGG that it is a new infection.


Go with your own intuition, I'd say most likely the bacteria stayed dormant, was somewhat in control by the immune system for a few years, then all you need to do is pick up a minor virus in the winter to allow the bacteria to surface again.

Professional fisherman Babe Winkelman recently said he's had lyme 3 times. Honestly, I just think a lot of people are relapsing when they say they've had Lyme multiple times.
/www.msn.com/en-us/sports/medical/babe-winkelman-warns-of-the-dangers-of-lyme-disease/vi-BBHulfv?ocid=sf

There's a misconception about this disease that once your body deals with lyme for a few years your body becomes immune to that strain. That couldn't be further from the truth considering what we know now about the bacteria: biofilms, round body forms, L forms, persister cells, and coinfections.
/www.sciencedaily.com/releases/2014/04/140402110029.htm - Journal Reference from CDC & Gary Wormser - this is WRONG!!!

Listen to what LLMD Dr. Jay Nielsen has to say about biofilms and relapsing, he trained with Dr. Jemsek.
/youtu.be/GdjWIiTeE9M

Even the guy from Reluctant Preppers mentioned how he treated with a month of antibiotics when he was first infected, basically put the borrelia infection in remission, then years later, he slowly came down with relapsing symptoms. The symptoms come on slow one by one because borrelia has a slower life cycle and goes undetected by your immune system, so most likely it goes unnoticed by the host/carrier.

I think the whole medical system even the lyme literate physicians are underestimating the resilience of biofilms and persister cells.

I even think Dr. Jay Nielsen underestimates this bacteria thinking nattokinase works well on biofilms, I'm sure it works somewhat, but not as effective as most LLMDs believe. The only two that worked well for me were stevia and xylitol, nattokinase did nothing for me. You can look up this enzyme on this forum and others, not a lot of people have had success with it.

Dr. Horrowitz is having a lot of success with stevia and strong persister cell antibiotics dapsone and pyrazinamide.

And chances are, this time around in treatment, the lyme infection you'll be treating will be much more resilient to the antibiotics you'll be using, Dr. Jay Nielsen mentioned this in the video... The morons at the CDC have the immunity thing backwards, chances are the borrelia bacteria is becoming immune to your antibiotics, not your body becoming immune to the particular borrelia strain.

Also, there's so many people that throw around the remission and cure word losely. Look, if you haven't made it to a full year without antibiotics or antibacterial herbs, you haven't reached remission.

I was off antibiotics for 7 months, thought I was doing well, then the infection came back in full force. The medical system has no clue what they're dealing with. Make sure your LLMD is following the top lyme literate physicians from ILADS or you'll get nowhere...

Look at the Doctors and Universities who's leading in the science surrounding Lyme Disease and disregard all the propaganda!

Leaders - ILADs, John Hopkins Hospital, Dr. Horrowitz, Dr. Jemsek, Dr. Burrascano, Dr. Sapi, Dr. Embers, Dr. Macdonald.... Listen to what these Doctors are saying, disregard the disinformation, misinformation and garbage... there's a lot of it!!!

Post Edited (Charlie55) : 1/2/2018 11:49:33 AM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32559
   Posted 1/2/2018 1:31 PM (GMT -6)   
springsjean said...
Hi everyone -

I was a frequent visitor here and once a moderator. Both my husband and I have chronic lyme.

Back when my husband was very ill (2011), my son (12 years old at the time) showed me a bullseye and almost sent me over the edge. We got him treated with 4 months of doxy and that was that.

Fast forward 5 years, last September, he started having shortness of breath issues. Tested for all allergies, sinus, lung, all negative. Back of my mind was the 5-year rule with lyme but he had no other symptoms. Now, a year later, he goes off to college and starts with brain fog, depression, anxiety, etc.

Take him back to lyme doctor and what do you know, lyme positive. However, dr. is saying it is a new infection. This dr is very nice but not totally up to date on lyme. He did use good lyme lab and test for coinfections (which were negative) but he is saying since only IGM is positive and not IGG that it is a new infection.

I don't agree and have yet to speak with MY lyme doctor but anyone have any feedback?

He is back on treatment and I will be researching who to take him to next. Brain MRI and EEG were also fine.

God help me. Here we go again.

Thanks in advance. confused


What is the 5 year rule with lyme? Not heard of it.

As it was pointed out...you can't go by the antibodies - IgM can persist.
But, his symptoms definitely show 'something' is going on. He could do a few weeks of abx and see how he feels - if he herxes...then you'll know....
Don't rule out the possibility that he was bitten again...


Or he could go on an herbal protocol.
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

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 1/3/2018 12:57 AM (GMT -6)   
/winkelman.com/tick-borne-illness-information-center/
Had initial lyme symptoms late 80's, then again w/with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.
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