H Mommy said...
(LLMD's nurse) told me they do not test for coinfections because there is no reliable testing for them.I asked about igenex tests and she said they are not reliable even for Lyme testing.I told her I am worried about coinfections after having three ticks and she said the doctor would just treat for any possible coinfections based on my symptoms.
This is not unusual - as long as he makes an effort to discover your coinfections through in-depth analysis of your symptoms and responses to treatment, testing isn't a requirement. Actually, I think she probably means that the CDC interpretation that is indicated on the tests isn't reliable and the lyme tests and the confection tests look for only one or two strains, while there are many that can infect you that can be missed. The IGeneX tests indicate an IGeneX positive or negative as well as a CDC-evaluation positive or negative result. Also, specifically for the lyme tests the CDC interpretation that is indicated on the tests isn't reliable--it's geared toward CDC surveillance case definition requirement so it strictly excludes a couple of lyme-specific bands (indicators). Many lymees choose not to test, so if you can obtain treatment without the insurance requiring them, this is a viable option. If you still prefer to have testing done you can do them on your own.
H Mommy said...
I told her I am worried about possible transmission of Lyme to my son through breastfeeding and she said not to worry, that it does not spread through breast milk. I am still worried.
She is only one source. Other sources disagree with her opinion. You're right to be worried and even overly cautious - if it were me I would not breastfeed until I completed treatment.
H Mommy said...
I asked about sexual transmission and she said there are no known cases of Lyme being spread sexually and not to worry.
There is no way ANYONE can know for sure if lyme & co have been passed sexually. However, there have been studies that show it was likely passed between partners. And there are studies that have found it in 100% of vaginal fluids and 50% of semen. She is overly dismissive, in my opinion. I take an overly cautious approach on this issue, as well. Here is more info:
"In the study, researchers tested semen samples and vaginal secretions from three groups of patients: control subjects without evidence of Lyme disease, random subjects who tested positive for Lyme disease, and married heterosexual couples engaging in unprotected sex who tested positive for the disease. As expected, all of the control subjects tested negative for Borrelia burgdorferi in semen samples or vaginal secretions. In contrast, all women with Lyme disease tested positive for Borrelia burgdorferi in vaginal secretions, while about half of the men with Lyme disease tested positive for the Lyme spirochete in semen samples. Furthermore, one of the heterosexual couples with Lyme disease showed identical strains of the Lyme spirochete in their genital secretions. The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,â said Dr. Mayne."
www.onlineprnews.com/news/454866-1390261507-lyme-disease-may-be-sexually-transmitted-study-suggests.html
"The culture of viable Borrelia spirochetes in genital secretions suggests that Lyme disease could be transmitted by intimate contact from person to person."
f1000research.com/articles/3-309/v3
"initial laboratory testing of semen samples provided by male Lyme patients (positive by western blot/PCR in blood) and the male sexual partner of a Lyme infected female patient were positive approximately 40% of the time. PCR recovery of Lyme DNA nucleotide sequences with microscopic confirmation of semen samples yielded positive results in 14/32 Lyme patients (13 male semen samples and 1 vaginal pap). ALL positive semen/vaginal samples in patients with known sexual partners resulted in positive Lyme titers/PCR in their sexual partners. 3/4 positive semen patients had no or unknown sexual partners to be tested."
www.anapsid.org/lyme/bach.htmlH Mommy said...
She also said it can't be passed through the placenta if you become pregnant. I am still worried about the sexual transmission for my husband and placental transmission should we ever decide to have a second child in the future.
Again, you're right to be worried and cautious and she is just plain wrong on this point. Not every MD keeps up with current information and sometimes they do not educate their staff. You can share with her what I previously posted regarding the numerous studies that have shown likely transmissibility (due to length I won't repeat them here - I placed them in your previous thread).
H Mommy said...
I told her I have a 21 day prescription of Ceftin which will run out before my appointment. She said to ask my primary care for another 21 days. I told her they said they will not refill it. She said she would put me on a cancellation list - I do not feel confident that I will get in sooner and am worried about if I will be sufficiently treated.
I would call into the office every other day and ask if you have moved up the list at all - be courteous but consistent and persistent... this will help you get in sooner. If not, there are sources online to order w/out prescript
ions although it's a little costly. Email me.
H Mommy said...
I told her also that I have felt worse since starting the antibiotic and every morning I get a fast heart rate and skipped beats almost every other beat for at least two hours after eating then taking my ursodiol (for intrahepatic cholestasis) and the Ceftin. She told me it's probably just anxiety and brushed it off. I know it's not anxiety and only happens in the mornings after taking my medicines. I hate it when symptoms are not seen as important and when I don't feel I'm being taken seriously.
I agree with you and this could be a red flag, or it could be her being overly cautious about
advising a person over the phone who isn't an official patient yet. Keep your antennae up on this issue...
H Mommy said...
Given all of these things and knowing this is supposedly a well known Lyme literate doctor, what do you all think? Is igenex unreliable? What do you think about the rest of what I wrote? Would you try and see another Lyme literate specialist if it were you? I would say the doctor's name in case any of you know him but I'm pretty sure that's not allowed.
As a new patient I think you should definitely pursue another option or two... time is critical (at least you are currently on an abx) but if there is another option out there - explore it. You can post the MD's initials and
location and ask more specifically if there are recommendations. You can also ask the office outright for referrals.
You've asked GREAT questions -
-p
Post Edited (Pirouette) : 7/25/2016 1:29:13 PM (GMT-6)