posted
Well, I went to see my LLMD. I have been off of
antibiotics for a year due to the fact that my
stomach is in such rough shape. I have Acid
reflux and extreme gas pain etc. I can not
handle anymore antibiotics. I have treated with
antibiotics for 3 and 1/2 years, which included 6
months of IV treatment. My doctor feels that
since I have not got any worse in this last year
that my lyme is no longer causing my symptoms. He
feels I may need to focus on detoxing etc. I was
very discouraged when I left his office. I love
my dr. He is a great man but it is obvious to me
that he can no longer help me. I am on cymbalta
for the nerve pain, which has been a miracle drug
for me. I am 90% better now that I have this
medicine. I will probably have to be on that for
the rest of my life. I still get flair ups once
a month just like I always have. I have a pain
dr that I see who gave me the cymbalta and ultram
and another one for muscle spasms. So that is
it. I will try the detox method that my LLMD
suggested but I will no longer be going to see
him. Part of me knew I would never be 100%
again. I guess its just hard to hear. I am going
to try to find an herbalist in my area to start
to work with. If any of you know if one in the
minneapolis area can you please give me their
contact info? I would really appreciate it.
My journey continues......
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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Angelica
Unregistered
posted
Wishing you luck in your healing journey.
Can you find a naturopath who is Lyme literate?
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posted
I would love to find a lyme literate naturopath. I just don't know where to start.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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posted
You may want to try Dr J's book...healing Lyme. It tells you a lot about detoxing. Dr Z is really good to help you detox and get build the immune system. I would try Allimax or Allicin to beging with. Chlorella is really good for detxing.
Posts: 136 | From Arizona | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I think your doctor is giving up and not being as good of a doctor as possible. I know that feels awful, but now you have a chance to find someone who wants to go the extra mile.
Maybe your current doctor is just not up to the task.
You might check with your local/regional lyme support groups for some references for LL NDs.
I would not go to one who had not read the ILADS research, though, as many NDs may SAY they know about lyme, but they don't really get the complexity.
This simply is neither a matter of getting the body stronger or slapping it with a basic anti-infective herb.
I would suggest getting both of the books above. Although they each approach it differently, they certainly are miles ahead of most NDs and offer detailed information with solid citations to back up their words.
That said, individual treatment by an excellent ND can also be of tremendous benefit. But it's a waste of time if they are not LL.
You can google search for accredited NDs in your area and then find out if any are truly LL. A few NDs around the country are also ILADS members and may, at times, incorporate abx with herbs, depending upon the needs of an individual.
If an ND is ILADS educated, s/he will know when to use what and how to combine for the best treatment while keeping the body as safe as possible.
In some states, NDs can prescribe some abx from a certain formulary. Each state is different in their licensing of NDs and each state's ND formulary can also vary.
Best of luck.
==============
Oh, and you might also want to get the book outlining RIFE treatment. Even if you don't get or use a rife, there is some very good information in the Rife book. (Although, personally, I was disappointed in the second book, Top Ten, it may also be of help. No book can be everything to everyone.)
Lyme Community Forums was founded in November of 2006 for the purpose of facilitating communication, collaboration, and friendship among the Lyme Disease community. The forum is a companion resource to Bryan Rosner's two books . . . .
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[ 03. October 2008, 04:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
In the same breath as the caution to be sure any ND you hire is LL - and TBD literate -- also important is finding a doctor who is great at assessing the possibility of other chronic stealth infections.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And, I'll add to this that porphyria might be a problem that can be affecting symptoms. The Cpn help site focuses nicely on that for their treatment protocol.
For more about porphyria -or even "just" elevated porphyrin levels and their effect:
posted
One way to find a good LLND is to go to your state's Lyme Disease Association website at Yahoo Health groups and ask people there who is good in your state.
Then choose the first group shown called MinnesotaLyme.
Once you are on this group's website, you need to sign up as a member to be able to post and read posts.
I did this for my state, Arizona, and found some patient's who saw Naturopaths that specialize in Lyme. I picked one based off doing this. The new ND that I'm going to start seeing has Lyme himself and it is his focus.
I have no affiliation with the business. But I'm using it myself and having really good results.
There's another thread below about "prickly feeling" where I've gone into more detail about it.
I can tolerate antibiotics, but right now they're bankrupting me, and I'm just tired of having to take them after over 3 yrs. I know others have been on them longer, but I keep trying other things to see if I can't find something better and less expensive, and just fell onto this recently.
Patti
Posts: 975 | From California | Registered: Apr 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
In Minnesota you might run into herbalists who are friends with/trained by Matthew Wood. He was one of the first to look at herbal treatments, though what he focused on was a plant called teasel, and most herbalists now focus on combinations of herbs.
Teasel by itself doesn't work for many patients with Lyme- Buhner's book Healing Lyme covers a lot more info on how to use it for some symptoms and what to combine it with.
Buhner thinks that some of Matthew Wood's patients had a different strain of Lyme than what some of the East Coast herbalists patients seem to have, and that this explains the teasel not working as well in some people's experiences.
But- since you've been treating for so long- have you actually tested for any coinfections?
-------------------- Symptom Free!!! Thank you all!!!!
posted
Healing Lyme by Stephen Buhner is a good book about herbs. Beating Lyme is by a chiropractor Dr. J of the Jernigan protocol.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10198 | From Illinois | Registered: Aug 2004
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Shosty
Unregistered
posted
I also cannot take anttibiotics. Took them for Lyme for 6 years, and have been off 18 months.
I strongly recommend being tested for yeast, and then treated with fluconazole for 6 weeks for so.
Also, treating food allergies by doing an elimination diet, and then trying one food at a time, to identify problems.
Gastrocrom 4 times daily (an anti-inflammatory solution made from and Egyptian plant, available by regluar prescription) is good for your situation.
And, of course, probiotics- good ones.
Antibiotics do a number on your gut, killing good bacteria and encouraging yeast. The yeast roots make your gut lining porous, which is often called "leaky gut syndrome." Food molecules migrate out directly into the blood stream and are seen as foreigners by the immune system.
Dealing with this substantially improved the health of both myself and my teenage child It took awhile, so patience.
And try to remember there are worse things in life than what we are dealing with.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Read Dr Zhang's book. Lyme Disease And Modern Chinese Medicine.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thank you all for your suggestions. I will look
into them all. At this point I feel lost. I think
I will look into treating yeast. Not sure if I have
it but will look into it. Then detox, then I will
to find an herbalist. I have found a few in my
area. So I will keep you all posted.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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