I'm a little intimidated because this is my first post, but, I have been recently diagnosed with Lyme Disease as well two co-infections, Babesia and Bartonella. Although I stopped treatment a couple of months ago, I still have elevated liver enzymes and have been taking multiple supplements recommended to help (including milk thistle etc.), my liver enzymes continue to rise. I'm planning to see a liver specialist but, I wanted to know if there were any Hepatologists in the country who are "Lyme Literate" or who have previously seen patients with Lyme/co-infections?
Posted by Keebler (Member # 12673) on :
- Welcome, Girl. Sorry you have to be here, but we hope you can get some answers.
First, are you taking magnesium? That is very helpful to the liver and to help calm headaches. Turmeric, too, may help as well as Krill oil or OmegaBrite.
As long as you have infection, you will have elevated liver enzymes. Milk Thistle can only do so much and there may be better supplements, too. Milk Thistle can actually be too strong for some - or it needs to be balanced with another herb sometimes.
Herbs are all about balancing and formulas usually work much better than any single herb.
Do you have a LLMD? If not, I would run, run, run to an ILADS-educated LLMD who will be able to best assess you. Then, then LLMD can determine if you need to see a liver specialist and can suggest one for you.
The LLMD may also know of an ILADS-member LL ND (naturopathic doctor).
Why did you stop treatment?
How long had you been treated? And were you treated for all of those?
Have you used other liver support supplements? There are many. But best under the guidance of a ND who has at least four years of education in the subject - and is LL beyond that.
Do you want links to articles or books?
Have you contacted your local lyme support group for suggestions from experienced patients? -
Posted by 24/7 Headache Girl (Member # 20354) on :
Thanks so much for your quick reply, I really appreciate it!
I am taking magnesium, but haven't tried the others you suggested. I do have an excellent LLMD. I stopped Lyme co-infection/babasia treatment in November (initial treatment started mid-July 2009) due to the elevated liver enzymes. Other liver support supplements in addition to Milk Thistle are: NAC, phosphatidyl serine and phosphatidyl choline.
I have seen a local liver specialist who basically told me that Lyme does not exist and although I have no underlying liver disease and I am not taking any liver toxic meds right now, there was nothing to worry about even though my levels are more than quadruple my baseline, this MD said "I don't have time, I need to see other patients" and walked out the door!!!
There are no suggestions yet from my local lyme support group and I haven't found anyone in a similar situation to get suggestions from experienced patients.
I think I have links to articles and books, but as a newbie I would like to make sure I have all possible resources.
There probably is not such a doctor out there, but I was hoping someone on Lymenet might know of a liver center willing/knowledgeable about Lyme/co-infections and be able to tell me about it without using a specific MD name which I believe is a violation on this forum.
Posted by Keebler (Member # 12673) on :
- So sorry you had to go through that horror that most of us know all too well of a specialist storming out of the room when we seek expertise by someone who SHOULD know more.
You learn quickly that, once we have lyme, only LL doctors will do (unless an emergency).
Don't give up. There likely is a liver specialist who is LL - somewhere. And if so, I'd also appreciate the contact details.
While porphyria does not necessarily raise liver enzymes, it can, and that is why I've included that below. It's a lot to sort through, but you can just set it aside if too much.
Good luck.
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People can PM you names and contact information. And I would also like that.
What would be great if you found a doctor well versed in both lyme and porphyria, too, as that is a liver condition that seems connected. While normally LLMD names can't be posted here, we can share articles and books that may be relevant.
You might look these over: =========================
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too: