Hi everyone. Had planned to begin mHBOT +/- UVBI/UVLRx over the summer, but I broke my foot and sprained my ankle, so summer was challenging in a tall boot on top of lyme.
But, the downtime also provided a chance to re-evaluate how I want to proceed with treatment, which led me to a new, local LLMD who offers a number of alternative treatment options to Rx antibiotics (Ozone—IV, sauna, 10-Pass and other types, UVLRx, Herbals, Low Dose Immunotherapy based on Dr. Ty Vincent).
I have not yet started any of these, just working on support measures right now, but I will come back once I have and fill you in if I have any encouraging news that might help others.
My main reason for this post is testing. My new LLMD uses DNA Connexions for lyme and co-infections, and rather than doing the exercise recommended by the lab prior to urine collection, he follows “the” Dr. K in Washington who has patients do an hour of deep tissue massage before collection instead.
Well….let me tell you, this massage brought out the bugs for me! I flared so badly for 3-4 weeks. On top of many current symptoms worsening, some symptoms which had been calm came back with a vengeance, including chest pains, shortness of breath and sweating.
Which then made sense when the test came back positive for lyme and two separate strains of babesia (duncani and divergens). I am so thankful to finally have proof of lyme/babesia still being active, which will help guide treatment. I believe I may still have bartonella, but it did not show up in that sample.
Even though I had a bullseye in 2010, along with so many lyme symptoms, I never had a positive for lyme via standard labs (plenty of lyme bands but never CDC positive) or Igenex (also plenty of lyme bands but borderline).
Only positive I’ve had in all these years is a bartonella henselae titer and a Lyme iSpot at one point that turned negative after a few months of treatment, so I was ruled “cured.” I was diagnosed clinically with babesia but never had a positive test (so my LLMD wavered on whether I actually had it or not), until now.
I would recommend this test over the ALS culture test, which is more expensive if you want to extend past 8 weeks, requires a doctor’s signature, only tests for lyme but no co-infections, and can take up to 4 months. I just did the ALS test in February and after 4 months it was negative.
DNA Connexions is less expensive and tests all of the standard co-infections, with results in weeks rather than months, and you do not need a doctor’s signature to order the test. The one downside is the chance you may flare like I did, but for me, it was well worth the information obtained.
I have a few family members who think they may have lyme and I am recommending DNA Connexions.
This is just my opinion based on my own experience, but I just wanted to pass the info along in case it might help even one person in deciding which testing to do.
Posted by farraday (Member # 21494) on :
I might add two other places that helped my diagnoses. Igenex Labs in Palo Alto CA and National Jewish Hospital in Denver. My blood is sent to both places every three months. My LLMD also insists that blood only be drawn at Bio Reference labs. The information from these tests show both progress and lack of it. I am slowly but surely changing those numbers.So is my husband.