My Daughter

[JulieKatie]

I just wanted to say that my daughter’s second Blot came back very positive. We were shut down by the doc before that due to first test being negative (even tho lyme is a clinical diagnosis). For the first test, she was on steroids and antibiotics. Now my suspicions were correct. We have been on a roller coaster since the LLMD was the one that told us she doesn’t have lyme r/t the negative test and that she hasn’t gotten better after 4 months of antibiotics. I expect that from a mainstream doctor but not from a LLMD. Thinking he may not be so lyme literate now. Will have to get by with him till we can get in to see a new doctor (waiting list). It is kind of strange how stressed I feel by the most recent blot, even though I never doubted lyme. I guess it’s the finality of the answer. Now I am confident we can get somewhere, esp after we see the new doc.

Have a great day everyone~ Julie

Daughter with Lyme…starting bartonella tx soon, + Blot on 3/27/12. 4 months of single antibiotic therapy with no improvement in symptoms. DIsenchanted with the health care system in general.

[Maz]

@JulieKatie wrote:

I expect that from a mainstream doctor but not from a LLMD. Thinking he may not be so lyme literate now. Will have to get by with him till we can get in to see a new doctor (waiting list). It is kind of strange how stressed I feel by the most recent blot, even though I never doubted lyme. I guess it’s the finality of the answer. Now I am confident we can get somewhere, esp after we see the new doc.

Daughter with Lyme…starting bartonella tx soon, + Blot on 3/27/12. 4 months of single antibiotic therapy with no improvement in symptoms. DIsenchanted with the health care system in general.

Hi Julie,

It’s very understandable how you are feeling right about now….your mother-bear instincts were right on the money and Katie is so fortunate you are her loving Mom. Getting a final diagnosis is in some ways vindicating, but also unnerving for chronic Lyme patients, because it’s an orphan disease…the mainstream doesn’t recognize it – or does, but is too scared to treat it, insurance companies rub their hands together as they don’t have to pay for it, and patients have to place their trust in physicians who can either be brilliant or just dabbling. I think you’re very wise to move on to a new ILADs-trained LLMD now, especially as your faith in the current one has been dashed. We have to work with these docs for a long time, reach deep in our own pockets for treatment, and having a good level of trust and an effective working partnership with them is essential.

Thank you for sharing your daughter’s Lyme testing experience here, Julie, because so often folk are unaware that Lyme testing is notoriously unreliable (even more sensitive testing can miss cases and should only be viewed as a guide), because it is such an immune-suppressive disease, and even more so when patients are on immune-suppressive meds that inhibit antibody production. Lyme waxes and wanes and can look negative on one testing day and positive on another testing day. I have a friend who gets tested every time his neuro symptoms make a return and the infectious diseases doctor tells him he must be getting reinfected each time, which is pretty laughable. 😆 It’s for this reason (and many other reasons) that Lyme testing shouldn’t be considered conclusive for no Lyme. As stated on the ILADs website (and even by the CDC), ultimately, Lyme should be a clinical diagnosis that is made by a physician who is skilled in TBD (tickborne disease) diagnosis and has received ILADs physician training. Tests can be a nice confirmation, but shouldn’t exclude a diagnosis if symptoms and patient history are highly suggestive of Lyme.

Thanks, Julie, and hope the next four months go by fast for you and that the new LLMD is going to be “the one.”

[JulieKatie]

Well, a lot has changed since my last post. Katie’s blot came back very positive, so even the dr that was leaning away from it being lyme is now thinking otherwise. I was able to get her in on a cancellation to see a doctor closer to us, and am so happy with her new care. Dr is certain she has bartonella, too. She is starting aggressively, and we are glad because the one antibiotic at a time routine really didn’t do anything for her. I am feeling scared about what is to come, but also thankful for the ability to have a new doctor like this one…my daughter is thrilled to have a dr who understands and “gets it.” I have decided to stop seeing our first llmd to change to one who follows ILADS, so we hope to make some progress eventually. Things are looking up…not in symptoms, but in the care and support she receives. Thank God for this new doctor. Hoping everyone is doing okay. Has been a rough year! Julie

Daughter 12 yo, lyme, bartonella, x 3 1/2 to 4 years.

[Parisa]

Julie,

Glad to hear that you were able to find a better doctor and didn’t have to wait months. Waiting months while your loved one is deteriorating is very hard. Sometimes it takes a while to find the right practitioner but when you do everything will fall into place. I hope your daughter does well with the combo therapy. Many need a combo therapy to hit the different coinfections and make progress.

[Author]

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