Looking for opinions ... my story

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Ashp9790
New Member


Date Joined Apr 2018
Total Posts : 7
   Posted 4/2/2018 10:47 AM (GMT -6)   
Hey everyone
I am posting because I wanted everyone’s opinion on what’s going on with me

December 2017 I started feeling sick I kind of woke up one morning and was nauseous , no appetite , malaise , burning in my stomach , just feeling really sick also with low grade fevers
Went to my GI doctor twice who told me it was a stomach bug
Since then I haven’t really felt better
In January I got really sick with an upper respiratory infection which felt like the flu I also had migraines
My PCP recommended I take the Lyme test and the ELISA came back 0.96 which is equivocal and I tested positive for the IGG 41 antibody only ... he suggested I take the 30 day doxy as he interpreted my test as borderline positive
He referred me to an ID doctor ... when I went to the ID doctor he said I definitely didn’t have it ( surprise) and I shouldn’t of been on the doxy in the first place

I went to a LLMD and he sent out my bloodwork to Igenix ... that came back inconclusive because I tested positive for band 41 and 31
He said he still considers that a positive and believes in addition to Lyme I have Candida and Bartonella

My ANA was negative , RA negative , I do have the MTHFR gene mutation , my CRP was good
He has me still on doxycycline 100mg twice a day with diflucan he said we can’t be too aggressive because of my gene mutation so I am also taking glutathiaone and the alkaseltzer gold

Currently I am still not feeling well , not terrible but just taking it day by day
What’s concerning me is I have flushing , rashes , feeling like my skin is burning , sometimes my throat is tight ... I went to an allergist and she is working me up for mast cell... the histamine in my urine was slightly elevated so I don’t know what’s going on with that she has me taking xycal everyday over the counter until we do more tests ... I also added quercetin because I read it could help but I am still not feeling good . I also started a low histamine diet

I am at a loss and wanted everyone’s reviews ... I think it’s bothering me I didn’t get a positive igenix test
Could this be anything else or just mast cell activation disorder on its own ?

Currently symptoms : nausea , itching , flushing , back pain , blurred vision , muscle twitches , low grade fevers , throat tight at times , my ankles hurt , some days very fatigued burning in hands and feet , severe anxiety

Thank you everyone

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 4/2/2018 1:08 PM (GMT -6)   
Hi Ash, welcome to our community.

The igenex IND on band 41 and 31 - did you not have the follow-up Epitope testing done?
It will confirm whether or not band 31 is indeed from borrelia. I've only seen one negative in the 3+ years I've been on this forum.

When was the test? Igenex holds the blood sample for several weeks. You could give them a call and find out.

It's possible you also have bartonella and/or babesia confections...and you may not feel better until those are addressed. Has your LLMD discussed this with you?
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/2/2018 2:37 PM (GMT -6)   
I experienced about half of the symptoms on your list. I would be inclined to trust your LLMD. I was skeptical too, as my tests were both interpreted "negative". I have been lucky to have a good recovery so far.

I will also tell you Doxycyline was not that great for me. It was not totally able to keep symptoms at bay. Zithromax did nothing at all for me. Minocycline, Ceftin, Flagyl and Clindamycin were all very effective at knocking back my symptoms fairly quickly.

It angers me that many studies I read perpetuate the belief that if a patient does not respond well to Doxycycline, then they will not respond well to other antibiotics. That is the fundamental flaw in the IDSA guidelines.

Did the Doxy make your twitching go away?

Ashp9790
New Member


Date Joined Apr 2018
Total Posts : 7
   Posted 4/2/2018 3:56 PM (GMT -6)   
Hi Girlie.. thank you.. I didn't know Igenix held on to the bloodwork. I actually just called them and left a message asking if I can add that test on to definitely confirm.
my LLMD suspects that I have bartonella from the low grade fevers, he didn't say anything about babesia. What is bothering me the most I think is the mast cell/histamine issues I am having now. The histamine in my 24 hour urine wasn't super elevated but elevated enough to where the allergist/immunologist was concerned. From what I understand this is a common issue with Lyme. Also my LLMD says that the gene mutation is a problem as well since I cant detox properly. I do the Epsom salt baths daily with peroxide, take glutathiaone, and do the dry brushing. My gene mutation is one copy of c677t variant and one copy of a1298c variant

Hi Missouri, I appreciate the response.
I have been on Doxy almost two months now.. I would say it has helped some symptoms but also brought out others. the muscle twitching is fairly new



also around the time I got sick we just bought out new house and before we moved in we had mold cleared from it but had a leak in the roof since. I know this doesn't help either

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 4/2/2018 4:04 PM (GMT -6)   
Were both bands 31 and 41 IgM?

I think they will only do the epitope test if the bands are both on same test (IgM or IgG)

Also - they may require your dr who ordered the test to request the epitope test.

But - having said that - both Dr H and Dr J (two of the top llmd’s in the US) consider band 31 to be enough to diagnose Lyme when used to back up a clinical diagnosis.

There are only a few “things” besides borrelia that band 31 can be.
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

Ashp9790
New Member


Date Joined Apr 2018
Total Posts : 7
   Posted 4/2/2018 4:19 PM (GMT -6)   
The igenix test said :

igg - 41++ and 31+ indeterminate results
igm- 41 ++ only

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 4/2/2018 5:47 PM (GMT -6)   
Ashp9790 said...
The igenix test said :

igg - 41++ and 31+ indeterminate results
igm- 41 ++ only


I think they will do the test - I know they do for the igm
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 4/2/2018 5:51 PM (GMT -6)   
Copied from Igenex site:

Exception – Indeterminate:
If only bands 31 and 41kDa are present.
Note: An indeterminate result could be due to presence of antibodies to viruses or other spirochetes. Therefore, the following confirmation test of an Indeterminate Western Blot IgG result is recommended: Test # 489 31 kDa Epitope Test IgG.
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

Ashp9790
New Member


Date Joined Apr 2018
Total Posts : 7
   Posted 4/2/2018 6:26 PM (GMT -6)   
Thank you .. i called them and they said the doctor has to order it so I will ask my LLMD

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 4/2/2018 6:29 PM (GMT -6)   
Ashp9790 said...
Thank you .. i called them and they said the doctor has to order it so I will ask my LLMD


okay - will you post the results if you do get it done?

I'd like to know if it's another positive.
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

Ashp9790
New Member


Date Joined Apr 2018
Total Posts : 7
   Posted 4/2/2018 6:30 PM (GMT -6)   
Yes I definitely will
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