posted
First off, don't go to an Infectious Disease doctor, they do not know how to treat Lyme disease. I see your on the east coast, we can help you find a LLMD who knows what they are doing. Just send a PM.
Second, If you have Lyme, you should be treated your entire pregnancy with antibiotics and have your blood levels monitored weekly to make sure the doses are high enough. Most expectant Mom's need IV antibiotics during pregnancy and afterward. You should not breast feed because you can also pass Lyme on that way. When the baby is born, you have to get the cord blood, placenta (biopsied) and the babys blood and urine checked for Lyme. Be very careful with this.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, I see all the while it took me to type this that you got some replies.
=========
The chance of transmission is NOT at all small. However, with proper treatment and planning, many women have given birth to a healthy baby. Others have infants that carry lyme. It is best to get yourself to a healthy place first, if possible.
It sounds as if you are not getting treatment now? Or have you finished?
You said: " . . long awaited appt. w/ an Inf. Disease doc is this week . . "
You also said: " . . getting pregnant after being diagnosed. "
You never said if you got treatment or, if so, for how long or if that was the required combination treatment with assessment for other tick-borne infections, too.
If treated, for how long? More than with just one Rx? --
Well, I'm not sure what kind of answers you will get. That depends upon the doctor. most "inf. Disease docs" (ID, members of the IDSA, Infectious Disease Society of America) simply do not believe that lyme is a problem.
On the other hand, doctors affiliated with ILADS have a far better grasp of the research and treatment protocols.
Before I spent a lot of energy that I really don't have explaining all this, can you be more specific about the doctor you will see this week?
Not the name, but is this a doctor who is an ID doctor, affiliated solely with the IDSA?
OR is this a doctor affiliated with ILADS?
How did you find this doctor?
-------
Have you seen the documentary "Under Our Skin"?
Have you read "Cure Unknown" by Pam Weintraub?
-
Knowing what you know will help in how we answer questions.
I'll check back - and others will be along to add depth and clarity. -
[ 09-28-2009, 05:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have not received any treatment yet. I found
out i had lymes through an ENT doc i was seeing
for something different and i took the first
available appointment with was 2 1/2 weeks
later - i guess the "long awaited" is
subjective.
I found this doctor through an acquintance that
has had Lymes for 15+ years. She is very happy
with this doc so i decided it is worth a try. I
have pages of questions so after my appointment
i will decide if i am comfortable or should
continue searching for a new doctor.
I am very new to this so i haven't read or seen
anythiny but different internet sites that are
informative but also very scary. At this point
i'm wondering if there are people that live
full, productive, long lives without daily pain
from Lymes?
Posts: 4 | From NJ Shore | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks for letting us know where you are in all this. Pardon for what may appear like the barking of orders. It's very hard for some of us to function, so just getting to the point is all we can do sometimes.
Yes, reading about all this can be scary - even beyond that. However, if you have lyme (there is no "s" on it, just for reference).
Well, if you do have lyme - or other TBD (tick-borne disease) and you have not yet been treated, most LLMDs (Lyme Literate MDs) who are ILADS educated would advise waiting to get pregnant.
The first order of business is finding out exactly what you are dealing with. I am glad that an ENT could recognize it but it sounds like you still need to go through the testing and cinical diagnosis process.
And, again, lyme is not the only infection that comes from ticks.
Not to scare you but dealing with what is ahead. Please. . . PLEASE . . .call that ID doctor's office and ask what professional affiliations he has.
It is good that your friend how has had lyme for 15 years is happy with this doctor but you still should do some more looking around. Has your friend seen improvements? What kind of success rate does this ID doctor have (although it can take years for patients to get better, after 15 years, I do hope your friend has seen good succes).
As for the pain - when the infection is treated - when you have good liver support - that can get better. As for living a productive life- with good treatment and the very best self-care, many have gotten through this and are leading full lives.
It is a scary and bumpy road, though, so I hope you can find the very best LLMD possible. You have several choices where you live. Some states have no LLMD at all. So, Good Luck and take care.
Others will be along with more suggestions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember that KNOWLEDGE IS POWER and keep breathing, okay? ------------------------------
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
When to Suspect Lyme Disease by John D. Bleiweiss, M.D.
=====================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
You can download GUIDELINES here from ILADS and from Dr. Burrancano - be sure to see both sets and read them all the way through:
I'd advise you to purchase a DVD of the documentary "UNDER OUR SKIN" as soon as you can - or borrow a copy. It would be best if you could watch this BEFORE your doctor's appointment.
posted
Thanks for all the information and taking the time to write. I will research the doctor further. I did notice that there were a number of LLMD's in NJ so i am lucky to have options. I'm sorry that you have been so affected by this but i, and i'm sure many others, are very appreciative of your efforts.
Posts: 4 | From NJ Shore | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Be sure to have your husband tested as well through Igenix. I got very ill right when we
started trying. He only had occaisional headaches, but tested positive. It is debatable if it may be sexually
transmitted, especially from man to woman.Talk to your LLMD. I hope to some day adopt a second
child when things get more stable. Good luck.
-------------------- abbyjo Posts: 255 | From Southern CA. | Registered: Jun 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Yes, as Keebler mentions above...if you are able, do try to see the film showing tomorrow night in Bryn Mawr PA. The film is very educational and there will be some excellent speakers and handouts. You will learn a lot there.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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WildCondor
Unregistered
posted
Keebler gave you some very good advice. i suggest reading all the info, calling doctors, asking questions and researching this much, much more!!!
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