posted
Hey everyone, I was just wondering if anyone has seen an immunologist who is knowledgeable about chronic lyme. I have responded very favorably to several antibiotics; however, the success is generally short-lived as I relapse when I stop the medication.
If I was able to maintain that success I would really be in pretty good shape. I think it's evident that my immune system is not functioning properly because it cannot contain the infection a lower level. I understand this is a problem for a lot of lyme patients.
It seems to me that I could take all the antibiotics in the world and that would not be an adequate solution.
If anyone has any insight or experiences I would love to hear them! Please pm me as well if you have any specific names!
Thank you!
Posts: 169 | From The Poconos | Registered: Jun 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I had IVIG for 2 yrs with no significant improvement, as well as 4 yrs of abx. It wasn't until I started antiparasitic herbs and salt/c and "saw" the results exit did I start improving. Parasites/worms are now being considered as the number one co-infection of Lyme by ILADS.
It is often overlooked even by the best LLMDs. Google parasite symptoms and check out the current Parasite Warrior Support Thread.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Gael, I have been treated very thoroughly for parasites, but I appreciate the insight. I understand how they are often overlooked in lyme/chronic conditions, and will continue to treat accordingly.
hoping and praying, I received your pm. Thank you!
I noticed that you both mentioned IVIG. Is that what you're getting by going to an immunologist? Do they/can they perform various tests assessing immune function? IVIG wasn't really what I seeking by going to an immunologist, but it's interesting that you both brought it up...
Thanks again for your help Posts: 169 | From The Poconos | Registered: Jun 2011
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posted
Pony you may want to consdier an integrative doctor who can help with supplements to boost your immune system. My DD sees a Lyme Literate immunologist however the treatment is limited to antibiotics with IVIG as a possibility. Our integrative MD is guiding immune support that seems to be helping, essentially a bunch of supplements and desnstitizing for allergies. Good luck
Posts: 92 | From New Yorl | Registered: Jan 2012
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posted
i am seeing a llmd who is specialised on immune function and cfs. he started me on ivig.
got three treatments so far, but it hasnt touched my pain yet and makes me way more tired.
Ive tried all other immunologic treatments on the planet before (well, feels like at least).
Posts: 214 | From Home | Registered: Apr 2011
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A LL ND can help with immune support.
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 (lyme literate) doctor 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.
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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Faithful for moving this and getting it some more exposure!
And thank you everyone for your comments! I understand the importance of the immune system and immune modulation in this disease, and will continue to pursue avenues to achive optimum immunity...
Hope everyone is doing well this evening!
Posts: 169 | From The Poconos | Registered: Jun 2011
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posted
Pony - you asked about the IVIG. My son developed an auto-immune condition from Lyme and co-infections after being ill for 13 years. His LLMD sent him to a LL Immunologist because he felt IVIG treatment would help him.
Yes, various testing is done to assess the patient. It was determined that my son had low IgA subclasses, etc. when bloodwork was done to check his immune system. That, in addition to his health history, qualified him for IVIG treatment.
This very expensive treatment (covered by our insurance, thank God!) is not a treatment for Lyme, but an immune system booster.
Immunologists use various treatments in their practice and IVIG is just one of them.
Hope I answered your questions.
Posts: 9020 | From Illinois | Registered: May 2006
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