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» LymeNet Flash » Questions and Discussion » Medical Questions » Please help - IGG bands positive - i think i need treatment

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Author Topic: Please help - IGG bands positive - i think i need treatment
lyme-again
Junior Member
Member # 20794

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Hello all
will try to make this short. I had lyme 27 years ago and treated with two weeks IV rocephin and relapsed 7 years after that and had one month IV rocephin. over the years i have never felt right but drs always conclude that i got treated so all good. and if I did not have 5 positive IGG bands they would not treat. Last blood work from ast week came up with the following:
bands 41, 39, 31,66,23 positive and 18 equivocal. Now i have the 5 bands as opposed to a month ago that i only had 4. please advise i need to get some type of treatment as i am very achey and do not feel well.

Posts: 3 | From Douglaston, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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Sorry you are not feeling well Lyme-again.

First and foremost, Lyme is a clinical diagnosis.
This is according to the CDC and the FDA.
Symptoms, environmental risks, medical history, then testing.

Your tests scream Lyme infection.
You need an LLMD to get proper assessment and treatment.
Unfortunately you might also carry co-infections.

You can take the MSID questionnaire for symptoms;

http://www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf

You can request a LLMD through Global Lyme Alliance here;
https://globallymealliance.org/education-awareness/find-medical-professional/

You can request a LLMD through IOADS here;
https://www.ilads.org/patient-care/provider-search/

These are simple e-mail formats that you fill out. These organizations will contact you with LLMD’s that are closest to you. Usually within 1 day. It is important that you research each LLMD referred.

Also contact the Empire State Lyme Support group.
Support groups offer referrals to LLMD’s in your area and first-hand feedback from Lyme patients and members.
https://www.empirestatelymediseaseassociation.org/Lyme_Support_Groups_Empire_State_Lyme_Disease_Association.htm

P.S.
You will be able to get treatment with your now positive CDC Lyme results through a non-LLMD. They will treat you for 2-4 weeks of antibiotics and declare you cured. But you know how that worked out the first 2 times. You need to be treated until all your symptoms are gone and then 2 months more after that to be sure. You can do this! Healing wishes.

P.S.S
If you want a LLMD through Lymenet, please post in “Seeking LLMD” in open forum.

Posts: 2165 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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PM sent for NY & CT.

You 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.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Here is a link which explains the Western Blot and the different bands (all the ones you mentioned are Lyme-specific):

Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the NY Lyme Support Groups at:

http://whatislyme.com/lyme-in-new-york/
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Link for NYC Lyme Support Group:

http://www.nyclymesupport.org/

Read the books written by the top LLMD, Dr.H titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.

Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy them used online.

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW

Btw - please break up your posts into 2-3 sentence paragraphs as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper tab, make your changes, then click "Edit Post". Thanks.

Posts: 8760 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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You had a short course of treatment each time, so it's likely been an issue for quite awhile.

Find an LLMD in your area and get started!

Do not worry about testing results .. just get treated.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94890 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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