posted
I see a physician's assistant for my medical care, and I have only seen PA's for years. To put it bluntly, she's not too bright or aggressive when it comes to finding out what's been wrong with me.
I had the EM rash from a bite nearly 16 years ago, but have never been tested as I didn't know what the bull's eye rash meant. I've just been dealing with all of these health issues which she attributes to assuming I must not be getting deep sleep (I sleep quite well).
As I'm new to learning about Lyme Disease, I'm still not sure about a few things:
1) How can I approach her to test me for a bite that happened 16 years ago?
I can't afford to get treatment without having my insurance pay for it and I can't see a specialist unless she refers me. Help!
Posts: 29 | From PA | Registered: Jan 2013
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posted
Honestly, before joining this forum I spent 9 years allowing inept doctors to see me because I didn't think I'd find anyone else and I was desperate.
But now I am learning that I should EXPECT care for my illnesses.
I would start looking for someone else if you feel this PA isn't helping. I started emailing multiple doctors in my area and on my insurance- both MD and ND's and if they don't respond saying they have Lyme knowledge, they don't get my money.
In the past month, I have found 2 people I can see now who are LL.
And I fired 2 doctors that I had been putting up with because I didn't think I would find people to help me.
Anyway, I hope you can either talk to this PA and get your concerns addressed or find someone to really help! Posts: 428 | From Midwest | Registered: Dec 2012
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posted
Even if she sent you to a specialist, it would not do you any good. She will not refer you to an LLMD and that is what you need.
Many insurance companies will pay for out of network doctors. Much of the cost of my LLMD office visits were picked up by my insurance company.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Go to "seeking a Dr.", I know there's a LLMD in PA that takes insurance Whatever you do, leave the dead-end Dr. that you are seeing now. She may test you (reluctantly), but even if you are positive, she's not the dr. She won't interpret the results correctly and definitely not the one to treat you, which it sounds like you need.
It's like asking a podiatrist about a toothache...You need a lyme specialist. Not an Infectious Disease Dr. either.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
How to approach the PA:
Tell her you want tested for lyme disease. Say you want the Western Blot and NO OTHER TEST. (She will want to start out with another test called the ELISA. Tell her you don't trust that test and don't want it and will not pay for it. You want only the Western Blot. The ELISA can miss 2/3 of all of the cases of lyme. The Western Blot is more accurate, but still not accurate enough.)
Tell her you had the bulls eye rash years ago and that is when all of your problems began.
If you can't get an order for a Western Blot from this gal, you will have to drop her and go to someone else who will do it for you.
Then, once the doc has the test results, get a copy and post them here. We will help you interpret them.
This is VERY important. Doctors who are not lyme specialists will often say your test was negative for lyme disease, but when you get a copy of the test result, you will see that you had a number of "positive" bands--indicating likely lyme disease.
Also, just know that you can have lyme disease and still the Western Blot (and every other lyme test) will come back as negative for lyme disease. Here is a quote for you on that:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy.
ERYTHEMA MIGRANS
Erythema migrans (EM) is diagnostic of Bb infection, but is present in fewer than half. Even if present, it may go unnoticed by the patient. It is an erythematous, centrifugally expanding lesion that is raised and may be warm. Rarely there is mild stinging or pruritus. The EM rash will begin four days to several weeks after the bite, and may be associated with constitutional symptoms." (page 7)
I strongly suggest that you read and study the Burrascano Lyme Treatment Guidelines at the link above. Then, find a doctor who specializes in lyme disease.
When you go to a lyme specialist and tell your history, your symptoms, etc, the doctor will tell you whether or not you have lyme disease. The proof of the diagnosis is what happens when the doctor gives you a course of lyme treatment. That will tell the tale.
I went undiagnosed for at least 10 years. I went to some of the best doctors, including Johns Hopkins, etc. before a doctor finally said it sounded like lyme disease to him and tested me.
I had to get names of lyme doctors from lyme support groups to find a doctor who could cure me.
Just know that lyme will NOT go away on its own or by you taking medications for other illnesses. It will just continue to progress in your body, causing more and more symptoms, until you get proper treatment for it.
Nearly all American doctors have been miseducated about lyme disease, so don't believe what they tell you about this disease. Everything they think they know about lyme disease is WRONG.
Doctors who have had lyme disease and found out that the standard lyme treatment (30 days of doxycycline) does NOT work end up becoming lyme doctors! They research for themselves and learn about the disease and what it takes to cure it.
These doctors rarely take insurance. Just warning you. It can cost a lot of money to get rid of this disease.
The treatment is long and some meds are very expensive. You treat until all of your symptoms are gone.
Why not look at the list of symptoms on pages 9-10 and see if you have a number of them. (Nobody has all of them. It all depends on what organs or bodily systems lyme attacks which symptoms a person will get. So, two different lyme patients can have totally different symptoms.)
You can't let this go. Eventually it will attack the brain and you will notice loss of brain function.
You can contact your state or other nearby lyme support groups for names. See Support Groups on left side of the page.
We will help you here as much as we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you all for your responses. It's a lot of information to learn/ investigate, especially when you're exhausted and have trouble concentrating.
I already have more than half of the symptoms on the list and the only reason I've been persistent about trying to find a reason was because I have such a noticable loss of brain function. I was convinced I had early onset Alzheimer's. (I'm in my 30's.)
Unfortunately, it doesn't matter how much the treatment would cost, I don't have the money to pay for it, so it's insurance or nothing.
Posts: 29 | From PA | Registered: Jan 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I also believed I had Alzheimer's. No doctor would take me seriously.
Now, find a lyme specialist that you can afford. And, tell him/her to give you meds that you can afford. It can be done.
You can get your brain function back if you get good treatment. If you don't, it will only get worse. This is a very serious and complex disease.
Don't give up!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
This PA may order the test for you, but as others have said, it is important to have an expert interpret it. Our insurance does cover many tests and antibiotics.
There a couple of ways to help with costs, depending on your financial needs.
I believe Igenex has offered discounts on tests in the past. Maybe someone else would explain or you could call the lab.
igenex.com
It will be worth it to get the best care possible. My dr. follows Burrascano; however people treat Lyme in many ways. Perhaps using herbs or salt/C would be a less expensive alternative. I can't speak from experience though.
Healing Lyme by Stephen Buhner (herbs) planetthrive.com
lymestrategies (salt c)
Posts: 312 | From Utah | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
See listener comments, too. They show us how very wrong the ID doctor is who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme
======================
Gael's last post brings up parasites. That's very important but even not all LLMDs are quite up to speed on that aspect.
There is more and more awareness of it with LLMDs, however, you will likely not be received well bringing this up to a regular doctor.
Still, be sure to consider parasites, too. They travel in the belly of ticks, along with lyme and other infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know you say that it's either a doctor with insurance or no treatment at all. In addition to some ideas above, you might check your insurance just in case naturopathic doctors or acupuncturists are covered - for any diagnosis.
Even if not LL (lyme literate), a ND or L.Ac. may be able to help.
Also see the articles and books, links here:
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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