My wife's CD57 panel results came back at 60 Lymphs/uL and my four-year-old's at 15 Lymphs/uL.
Our Plano, TX Immunologist Dr. R. who ordered the tests doesn't think it's Lyme despite my wife's text book symptoms of bull's eye rash 6 yrs ago, current arthrititic type pains including the claw hand in the mornings, pins and needles in her feet each morning, serious brain fog, stomach issues, insomnia, etc. but was willing to order Igenix testing.
My son has his own symptoms of sensory processing disorder like things, excessive sleeping, inability to play in the hot of the day, lots of food issues, complaints about leg pains, etc.
My son would have gotten Lyme in-utero. I also have two younger boys.
Should we cut our losses with this guy and invest in the trip to the East or West coast and let them order the testing? I'm assuming the first trip will cost $4-$5k all in.
Just not sure if waiting around for the Igenix is worth it or will the LLMD know everything that should be ordered and we may be wasting our money on the immunologist choosing the tests at Igenix.
Thanks!
Posts: 15 | From Houston, Texas | Registered: Dec 2016
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posted
Personally, I would want another doctor. If you don't get some good responses to your question, send a pm to a Moderator, like Lymetoo, and ask for the "Lymenet names"
of some of Lymenet's Texas members. Then send several a pm and ask them to look at your post of 1-14-17. Maybe you can find a good Texas LLMD and not have to travel so far,
To send a pm, you look through the questions posted till you find one posted by a Moderator, click on their name and it will bring up the page that will let you send a pm, "private message."
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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I see no one ansewered you. I would post your question again but add the word "help" in the title. People are often sick but always respond to that kind of request. Good luck.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
CD 57 results and clinical symptoms consistent with Lyme. Plano Dr is giving BS, you will NOT get appropriate treatment in Texas unless you see one certain Dr, OR Go out of state. Dr. W is an option. There is another one in **** but he is not well himself and does not medicate with appropriate dosages because he is afraid of the medical boards coming after him.
posted
Yeah, I agree. Glad the doc was willing to run the test but you need one knowledgable in Lyme disease to evaluate your wife and child.
There's a good doc in TX I'd try before I made the trip to he coast. I'm not sure if he treats kids though. The docs on the coast are really good too. I'll pm you.
Posts: 748 | From Texas | Registered: Feb 2015
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susank - the best way to find a LLMD is by personal references, not by googling names.
Contacting Lyme Support Groups is a good way. Another is to post the doctor's last name initial and state only on Lymenet (per Lymenet rules) to ask for information about him/her.
For example: "Need Feedback on Dr. _ in TX".
Posts: 9020 | From Illinois | Registered: May 2006
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Your Immunologist is not Lyme-literate. Both your wife and son need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
My wife is nursing our infant, so we're not sure when we could start treatment. Thus, we felt like it may be prudent to wait for Igenix until we see the LLMD versus having to pay for them twice.
One more question. My wife contracted Lyme in Summer '10. We were married six months later. WIthin weeks of marriage, and consummation, three goofy red welts showed up on my thigh.
I went to an MD thinking her cat gave me ringworm (ridiculous, I know) and he said it's not ring worm and gave me ointment.
I don't have any symptoms that I can tell. But if she is passing it to our kids through the placenta, should I fork over the initial consultation and testing fees for myself when we find a LLMD?
Posts: 15 | From Houston, Texas | Registered: Dec 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Nursing mothers can be on lyme treatment. In fact, it is recommended that she be on treatment while nursing to prevent lyme from being passed to the infant in the breast milk.
The world's foremost pediatric lyme doctor, Dr. J., makes this recommendation.
So, do not delay seeing a lyme doc for this reason.
Also, I recommend letting the lyme doc pick the tests that Igenex should run rather than a doctor who is not a lyme specialist.
If you can't get in quickly with the lyme doc, then perhaps you may want to get Igenex done through some other doctor. You could just get the lyme panel done. That is not very expensive. Just get the Western Blot, IgG and IgM.
The lyme doc will then have those results to review when you go to him.
Regarding having yourself tested, your chances of getting lyme from your wife are much lower than the unborn child's chances.
If you want tested for peace of mind, I can understand that.
There is not much exchange of bodily fluids from the wife to the husband during sex, so that is why that type of transmission does not occur readily. More often, male to female.
With the baby, the baby is getting the mother's blood.
So, do what you need to do to have peace of mind. I had undiagnosed lyme (plus babesiosis and bartonella) for at least 10 years before a doctor thought to test me for lyme.
I was then concerned about my husband getting it from me. I had him tested through Igenex and he didn't have it. That was nearly 12 years ago and he still doesn't have lyme symptoms.
Generally, if you are in good health, meaning that your immune system is strong, you would be able to fight off the low level of lyme bacteria that you would be exposed to through kissing, sex, etc. with your wife.
So, if you let symptoms guide you, you will probably be OK. The lyme tests are so unreliable that symptoms are what the doctors rely on. You can read that in the Burrascano Lyme Treatment Guidelines, page 7. They are found here:
Below is a link to notes I took about gestational lyme from Dr. J when he spoke at a lyme conference. Please have your wife read them. Notice this sentence:
"The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed."
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