Subtle symptoms since stopping treatment

[mdmom]

My DH and myself under the guidance of our LLMD were treated for Lyme, Bartonella and Babesia since June 2011. We chose to treat even though we were not extremely symptomatic based on positive Lyme results (on alternative testing), the fact that our daughter has definitive diagnoses of Bartonella and WA-1 Babesia, and the fact that our son has PANS and Common Variable Immune Deficiency. LLMD said that particularly with Babesia, Lyme docs are finding that no one in the house gets well unless everyone is treated (we even had the pets treated).

 

Babesia treatment was the longest (9 months for DH and me) and we stopped taking antibiotics and antiparasitics 6 weeks ago. We continue to take Valtrex, Diflucan, Nystatin, LDN, probiotics and some supplements for detox. We won't go back to the LLMD for ourselves until April.

 

I have been experiencing subtle symptoms in the last 3 weeks - foot cramps, backaches (more than usual, teeth sensitive to hot and cold, and yesterday a stiff neck (with little range of motion) out of the blue that took me to the chiropractor this morning.

 

My husband told me just the other day that he is getting foot cramps and backaches more often.

 

Do you think we have not cleared one the infections floating around my house? Again, the symptoms are subtle but when we were treating for Babesia, we felt the best we had in years. Too bad you can't stay on Mepron forever.

 

Thoughts?

Edited February 26, 2013 by mdmom

[sf_mom]

I would definitely document symptoms and report to LLMD in April. Enjoy the antibiotic holiday. I suspect you are not done with treatment. Perhaps herbals remedies are warranted verses full blown antibiotic protocol.

 

I started treatment in September 2010. Stopped treatment April 2012 and had subtle symptoms resurface within two weeks of stopping antibiotics. I went back on antibiotics by June 2012. Since June I have had some of my worst herxheimer responses since starting treatment but am also trending much better with some really great days. Currently on Melarone, Bacilin Shots, Minocycline, Glutatione push. Recently tested for blood clotting and heavy metals.

[SSS]

Hi- I wanted to reply since I'm also an adult that recently went off all Lyme treatment.

 

Honestly, I don't necessarily agree that unless everyone is treated in the house, no-one will get well- I have 2 healthy and neuro typical children who don't need treatment of any kind-

maybe that was meant for all infected people?

I do believe pets can absolutely re-infect - we have no pets, but feral cats got me into this mess in the first place, I'm sure of it. Not anxious for furry friends ever again.

 

Anyway, I treated very aggressively for 18 months- mold, parasites, yeast, Lyme, Bartonella- multiple antibiotics and herbs, massive supplements.

I think 6 months of Bicillin shots with Tindamax every 2 weeks on and off cleared significant neuro issues, short term memory is better.

I'm the one who carried Lyme for years with no clue, thinking it was just how life rolled with me, never seeking help.

 

I've been off everything except some supporting supps for around 6 weeks- haven't seen my LLMD in 3 months.

Is everything perfect? No. But not sure perfect is even attainable- I've grown and feel more confident- and feel confident I knocked deep infections down.

I think it's individual, of course, but Advil here and there takes care of any pains for me. I'd say my biggest complaint is fatigue- but I'm able to run my busy family, and may explore looking at thyroid again or hormones through my regular Dr. I need to rest at times during the day, which is frustrating to my type A personality, but part of that acceptance deal.

 

At this point, I am certainly waiting and watchful, but also moving into acceptance of where I'm at- I think there is also an emotional component to healing- this journey with Lyme disease with my daughter and I, and PANS- has been filled with strife and stress- she and I are moving into doing therapy together, too-

Financially this has made a large impact as well- so utilizing what our insurance offers is part of our new direction.

Edited February 27, 2013 by S & S