Please help - LLMD in Los Angeles

Hi swede in LA - welcome to our community! I'm sorry you are in so much pain...

I just started Rifampin about a week ago, too. How much are you taking? I am finally taking 300 mg a day now...I started at 150 mg to ease into it.
In a few weeks, i will be taking 300 mg twice daily.

When starting a new antibiotic - you should start at low dose - especially since you have the MTHFR gene. Did your pain increase after you started treatment?

Are you doing anything for detox?
You should read the thread at the top of the page titled: New to Lyme?..Start Here! - it's full of good information, including a section on detox.

With MTHFR mutations, your body's ability to detox is impaired...so you need to address that. Are you on any supplements to address the MTHFR?

Is a regular MD treating you thus far?

HI Girlie - thx so much for answering! I am being treated by and LLMD but he is over 80 and forgets, cant keep up with my treatments, so I am mostly treating myself...
I also just started Rifampin with 150 mg to ease in. cannot tolerate the ABXs... caught in a corner. Cant tolerate biaxin, had to stop. just got back from sweden and thought i was going to commit suicide. the flight cracked my head open and i ended up in the ER with morphine drip, had to use a wheelchair. so depressed and scared. decided to test for co-infections, waiting for the results from igenex.
my symptom is always the same, in varying degrees - searing electrical pain through my teeth and nose bone, severe muscle contractions mounting to almost seizures (stiff all over, toes, spine, face contorting)
My LLMD has never heard of this and dont know anything about MFTHR> (I ordered my blood panel that just came back and insisted on homocysteine - and it came back at 15. It could be the cause of my severe neuropathy but to lower it i have to take folate and B12 (methylcobalamin) and i cannot tolerate either - get horrible symptoms within 10 minutes. So tired and feel broken. I am trying everything but nothing is helping. I am losing hope. xxC

Hi Swede in LA!
Welcome to our community!! I'm so glad you joined us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

You also will likely find this thread helpful for your MTHFR mutations:
www.healingwell.com/community/default.aspx?f=30&m=3479542