posted
Hello, I tested positive for Lyme this year after many misdiagnosis over 15 years. Have been working on it holistically, but feel I need medical guidance at this juncture. The arthritis and fatigue are affecting my job - along with brain fog and everything else. Now it really seems to be working on my cardiovascular system. Hard to get deep breaths and feel like my heart wants to come out of my chest. Please help! I am in Waco, TX, but know I will have to travel to get treatment. Thank you!
Posts: 2 | From Waco, TX | Registered: Nov 2016
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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.
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.
Please read the following about LLMDs and Texas which was recently posted about TX:
"Texas is not a great place to find a good Lyme doctor. Texas threatens its Lyme doctors and gets them to move or stop practicing without notice.
Then, if they start up again a year or so later, they do it to them again. So, there really are few Lyme doctors there and no top notch ones.
Because of the sorry state of affairs in Texas, many folks from Texas are coming to the East Coast for testing and treatment for Lyme disease and it's co-infections.
At least half of all Lyme patients travel out of state for their care. The doc is the key to the diagnosis and for getting rid of this horrendous disease. I can't emphasize that enough-the doc is the key.
This is what I wrote to another Texan in Sept. Look at the following thread to see the discussion:
Btw - I know you are new to Lymenet, but 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 that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It is difficult if not impossible to get good treatment in Texas. So, are you willing to travel to the Maryland, D.C. area for good treatment? Many from Texas are doing just that.
You only have to appear in person once every 3 months. This good lyme specialist will do telephone or Skype appointments with you the other months.
And, there is virtually no wait to see this doc. He basically follows the Burrascano protocol, meaning high-dose combinations of antibiotics.
The Burrascano protocol is the most successful protocol in the world for lyme disease. It is here:
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Sorry to say Texas is not a good place at all to get Lyme treatment.
You don't want to mess around with Lyme and coinfections. I highly recommend you go out of state for quality treatment as soon as you can.
I can send a private message with a good recommendation.
Welcome to lymenet, although I'm sorry you are here bc of being sick. Best.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Thank you for the information! I don't think I could afford traveling to Maryland. I think if I weremember to go out of state, I would try the Hansa center, but I know I can't afford them either. I'm trying desperately not to use antibiotics. I just want a lot more testing and guidance. I had hoped to find a doc at within the state. At least for now. I appreciate any and all information you are willing to share! Thank you!
Posts: 2 | From Waco, TX | Registered: Nov 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you already tested positive for lyme disease, what additional testing are you seeking?
Why are you trying desperately not to use antibiotics?
Are you asking for a lyme doctor, in Texas, that does NOT use antibiotics?
I know of one in Texas near New Mexico. The reports I have on him say he is not getting folks well.
Have you read the Burrascano Lyme Treatment Guidelines? They are here:
The Burrascano protocol is the most successful lyme treatment protocol in the world. It uses high-dose combinations of antibiotics.
So, your requirements are going against what nearly all lyme specialists are doing to get people well.
Perhaps you should get the book by Stephen Harrod Buhner, "Healing Lyme" which does not use antibiotics. Try his approach.
Lyme patients who have tried the Hansa Center report that it did not get them well. And, it IS extremely expensive.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF gave you very good advice, which comes from many years of being sick and getting well because of treatment by an experienced Lyme-literate doctor who follows the Burrascano Guidelines.
You wrote you have been treating holistically, but are still sick & it appears you are getting worse. You probably have additional infections which come with Lyme, i.e.Babesiosis and Bartonellosis. That would have to be determined by a seasoned LLMD.
While some patients cannot tolerate antibiotics, that is the treatment used for Lyme Disease. Ideally an integrative approach would be good to keep the body strong while you are being treated.
Btw - we took our son to the Hansa Center, but it did not help him.
Here is a link found on Lymenet for "Financial Help and Other Information":
Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
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 that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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They have a special program for financial hardship which would cost 1/3 of the regular price and can be obtained through any doctor (does not have to be a Lyme-literate one), including chiropractors. You'd have to call Nutramedix for more information.
An application is filled out and they call the practitioner to verify the information. The patient is then notified of approval. The stipulation is is that only one patient in each doctor's practice may get this assistance.
Posts: 8981 | From Illinois | Registered: May 2006
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