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Seeking a Lyme literate doctor Who will treat me as per ilads guidelines as opposed to idsa. We do not have a lot of money but are currently in the Montclair area in California and are seeking Lyme literate doctors nearby or anywhere in the Southern California area...
I'm suffering from late-stage Nero Lyme disease and do remember the bite where I got infected as I got a rash and the flu immediately afterwards but no one tested for Lyme. And this is 20 years ago. I literally only got formally diagnosed 3 months ago, but only after spending basically my whole life being given misdiagnosis after misdiagnosis.
I have three bands at least according to W.B. and test positive for co-infection.
Can give igenix and further test results upon request.
Originally sought treatment from my primary who is incompetent at treating Lyme and keeps referring me to rheumatologist and other idsa following doctors.
I was hospitalized for seizures and extreme pain and involuntary shaking recently where they administered IV Rocephin and I showed significant Improvement until their idsa infectious disease lead doctor saw my test results and said I have Lyme but not enough Lyme to Warrant treatment.
They put me on oral doxycycline which made things worse and my symptoms have not improved in the month that I took the medication. They have only gotten worse.
Now my primary wants to send me to neurology, and then after that to a psychiatrist... which I have seen on my own and independently of this for over 10 years and this has never been an issue. He should send me to an infectious disease doc but even those often tend to treat by isda guidelines.
We are extremely broke, but are desperately doing our homework and trying to find Lyme literate doctors so we can start doing whatever we have to do in order to be able to raise the amount of funds we will be forced to pay out-of-pocket most likely. Unless you happen to know of a doctor who is in my area that accepts IEHP Medi-cal insurance.
I am looking to get a PICC line placed and receive antibiotic Rocephin as that is what has been proven to be most effective in cases like mine.
Not looking particularly for a homeopathic, at least not one that is exclusively so.
Please... Any and all help is totally and utterly appreciated. Thank you so much in advance. Please feel free to direct message me here or email me at [email protected] or find me on FB, under Bleu Rose Boyer-Villa.
I am a new mom, 29 and have two babies, aged seven months and two years old, respectively. It is absolutely killing me that Im literally and physically unable to take care of them more often than not got a feeling that is worse than even the worst physical symptoms of this terrible disease.
My family needs me. And I desperately need help.
Thank you so so much in advance. I desperately hope that I will hear from you guys soon. Thank you and please have a nice day.
Posts: 2 | From Montclair, CA 91763 | Registered: Mar 2017
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It has some cost reducing tips for Lyme related tests, where/how to get free and reduced priced medications, dealing with insurance issues and other things that may help you and your little ones.
If you have any questions please feel free to ask.
Keep the faith. And remember, you are not alone.
And more than anything, I hope you are feeling better soon!
So sorry you are going through this. Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.
Here is a link for you to read about "Two Standards of Care":
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.
I hate to bring this up, but your children may have contracted Lyme from you. You should keep an eye on them to see if they exhibit any symptoms. If so, they will also need to be evaluated by a LLMD who treats children (not all do).
Here are some links for you with good information about Lyme and children:
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
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". It is an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or you can find a station near you by putting in your zip code in this link:
Btw - I know you are new to Lymenet, but you should not use your real name (if in fact you are), because this is a public forum with all sorts of people on it. Read this link about it:
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The
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