I am coming to you for help on a topic that I can not seem to find much about online. I recentely stopped a 4 months round of doxycycline (only treatment I have ever had - have had lyme for 1.5 years prior to beginning doxy). My llmd said my lyme is in remission and the dizziness (only sx that remains) is not due to active lyme. So he said to stop abx and that I did not need to see him again. I guess taht is good, but it makes me nervous because my treatment was short....only 4 months (actually a week less than that)!!! Also, I want to get pregnant now. LLMD said to go ahead if sx stay away for the next 2 months. Do I need prophylactic abx during pregnancy though? Or would it be ok to not take anything since lyme is in remission!!?? taht is what llmd reccommended, but I'd like personal opinions from other lymie mamas
please and thanks so so so much!!!
Posted by Keebler (Member # 12673) on :
- Sareta,
Welcome. As I can't formulate words and sentences very well for "conversation" this will lack the desired (can't even think of the word).
So, I apologize for getting right to the main points.
1. The doctor who treated you does not sound like a true LLMD (lyme literate MD).
2. It does not sound like you are yet in remission - but the doxy may have caused the spirochetes to go into cyst form and not be as active -- but they could just in hiding.
Doxy, alone, has a 200% increase in the cystic form of lyme. See next post.
Sorry. I wish I could think of a better way to say all this.
3. IMO, it is not yet safe for you to conceive (however, if already there, treatment can help with a real LLMD).
Although that doctor went beyond the typical IDSA suggested very short treatment to four months and where you are feeling better, he did not go far enough in so many ways. IMO
Combination treatment is required to address all stages, forms of lyme itself. Doxy cannot do that. Sadly, "mono" treatment with just doxy can cause lyme to be chronic if other measures are not taken.
Good thing you are asking before attempted to conceive as lyme can be passed to children by mother or father.
OTHER tick-borne infections should also be assessed.
DIZZINESS, VERTIGO, ongoing can most certainly be lyme related. It's a hallmark symptom, actually, of lyme but also for babesia and maybe bartonella. These other infections can also be passed along to baby.
Sure, other things can be involved but since you know you have lyme and you know (now) that it has not been properly addressed, the important thing now is to
FIND A TRUE LLMD.
If you did not employ a good liver support plan during doxy treatment, that can also make the inner ear issues worse.
And, yes, indeed - absolutely - there have been many woman who after successful treatment have achieved remission so as to bring a healthy baby into this world.
Even after achieving remission, though, you may need to be on treatment all during pregancy - "may" that would depend but you need the very best LLMD to help determine your course.
Yet even if remission is solid - at each step of pregnancy - close monitoring is important. The baby would need to be assessed (cord blood is often tested) and if there would be any concern, early treatment can also be extremely helpful. -
Posted by Keebler (Member # 12673) on :
Topic: replication within cystic forms of lyme -
Posted by Keebler (Member # 12673) on :
- While each LLMD and LL ND has their own preferences - and each person with lyme & co. requires an individualized protocol, every good LL doctor should have knowledge of this protocol - and one that resembles it in the major aspects.
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
[this last link is not going through right now. Go to pages 27 - 30 in the original link above.] -
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Note:
"Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines."
(detail from a poster here who had trouble with a doctor who had claimed to be LL and an ILADS member but, after some time and money spent, it was clear he was not, not at all).
Contact all the area lyme support groups and your state lyme groups - IF they are "ILADS-aware" -
Posted by Keebler (Member # 12673) on :
- In additon to better addressing the causes, to help vertigo:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
Explanations, possibilities and support methods. -
Posted by Keebler (Member # 12673) on :
- Especially when considering staring a family - and during pregnancy - it can be helpful to also have a LL ND on your team.
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links (other ways to treat if antibiotics are not well tolerated - not recommended if pregnant, however) -
Posted by Keebler (Member # 12673) on :
- You may also find this group can answer some questions:
This blogger is posting her notes from the ILADS lectures. (I think the ones that were streamed.) She started with Dr. C's lecture on pediatric Lyme and Lyme in pregnancy.
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