posted
Appt yesterday. Been off ABX for 2 months - taking a "break". I am in a major flareup - I described it to LLMD as major a Fibromylagia flareup for lack of a better description. Worse than I was in December when DX's with Lyme. My everything hurts. I haven't been this bad in years!!! I felt much better when I was on ABX, begged to be put back on the ABX protocol I was on.
LLMD says they must follow the gvmt rules mandated for treating Lyme. I could tell he was very upset by this.
I am taking herbs and supplements and will continue to do so.
I'm scared, not only for myself but for everyone that this type of gvmt mandated treatment will affect. What are we to do????
Posts: 250 | From East Coast | Registered: Jan 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
can you find a new dr?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Is he a real LLMD?? Is he referring to the Affordable Health Care Act.. or what??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is he in with a clinic system? Does he have a boss? Is he covered by insurance? If so, he may not have control over his treatment. He may even be using terms such as "mandate" incorrectly to push you away.
Is he an ILADS member? As LymeToo wonders, he may not be a "true" LLMD.
Or, he may be worried that he will be next in line for political pressure from the IDSA. It does happen. This may not be the reason, still, it's clear it's time to move on. Sigh. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- RDayWillCome just posted this relevant article that could explain what's going in your case:
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Go to one of the doctors I recommended to you and this will not happen. You will be treated until you are well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Yes, he is a LLMD, yes he's associated with ILADS. No, he is not with a clinic.
TY for the article Keebler. In it is stated: "Recently laws have been passed to allow physicians to treat Lyme disease beyond the expired treatment guideline recommendations of the Infectious Disease Society of America (IDSA)" Are these federal laws or Mass laws? Does anyone know?
droid1226 - can you get oral ABX online without a script? Doxy, Flagyl, Duflican, Biaxin, etc?
TF - He treats his patients until they are well, many yrs for most patients - something seems to have happened recently though to change things.
TF - All other drs suggested are at least 1 1/2 - 4 hrs away and do not take insurance. I must maintain my job, I don't have a lot of vacation time available, so these are not options. If I lose my job, there will be no money and then they will really not be an option.
I had a refill left on one of the ABXs so I have called it in. I have a RX for 30 worth also. Will fill after getting the refill. We'll see how that works. Then we'll figure out what to do.
The ACA is telling Drs how to treat their patients now - drs have no control over individual patient treatment any longer. Pharamacists, if they feel the dosage or RX is not needed, can contact drs to find out what's going on with the patient and not fill orders now. The dr must provide patient health info to the Pharm once these questions arise. The Pharm problem shouldn't affect me as the rules currently are written, it's more for pain type medications.
Sorry didn't mean to be so long winded.
Posts: 250 | From East Coast | Registered: Jan 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
jjourneys may not be interested in this, but for others reading this thread, there are some great lyme doctors who will do telephone appointments with patients after the first in-person appointment.
So, that means that you will not be having to take a lot of time off from work to see a top notch lyme doctor that is a few hours or many hours away from you.
I believe that seeing a top notch lyme doctor gives a person their best chance of getting rid of this disease. You must go for expertise and forget location.
Many, many lyme patients have had to do this to recover their health.
And, lyme itself can cause a person to lose their job, so people need to try to nip this disease in the bud as soon as they can. Once you lose your job, you lose your health insurance, then often credit cards, and on and on. Then, you can be totally out of options because the lyme has progressed so much.
So, I advise people to do what they can to get on top of this disease early while they still have resources. It may take asking a church or family members to help you out to cover that first, very expensive appointment. I have approached my church to help a few people this way, and the church was willing.
I hope this can help some out there who are wondering what to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Quote from a post above: "The ACA is telling Drs how to treat their patients now" (end quote)
ONLY if they are covered by insurance that is part of the ACA. If they are independent and not covered by insurance (as is the case with most LLMDs), there is no mandate to which they must adhere. That is for insurance coverage.
Now, it may be that if the LLMD is not under any insurance, the Rx could still be. So, in that case, I can see how the insurance company will still control the treatment. But it's not much different than before the ACA. And the ACA does not start until next January.
This new trend of pharmacists playing bully and intimidating patients when they pick up their prescription - sometimes denying it and demanded to speak to the doctor - and even approve the doctor's orders -- well, that is a problem. I don't think that is at all legal but they seem to get away with it.
The diagnosis and treatment plan is NONE of their business. None.
But there is a stepped up war against antibiotics in general. So all bets are off. It's like pharmacists are the new IDSA & Insurance deputies in all this.
And, I know, that they think they know what they are doing and mean well (sometimes, they can catch terrible mistakes or Rx interactions) but, with lyme, it's not what they think if they believe the IDSA. But it's what they do. They likely have pressure on them, too, and a toe across the line could close them down. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I agree with TF.. If you do not get this under control NOW, you may not be ABLE to work. Most LLMD's do not require frequent office visits.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by TF: jjourneys may not be interested in this, but for others reading this thread, there are some great lyme doctors who will do telephone appointments with patients after the first in-person appointment.
So, that means that you will not be having to take a lot of time off from work to see a top notch lyme doctor that is a few hours or many hours away from you.
I believe that seeing a top notch lyme doctor gives a person their best chance of getting rid of this disease. You must go for expertise and forget location.
Many, many lyme patients have had to do this to recover their health.
And, lyme itself can cause a person to lose their job, so people need to try to nip this disease in the bud as soon as they can. Once you lose your job, you lose your health insurance, then often credit cards, and on and on. Then, you can be totally out of options because the lyme has progressed so much.
So, I advise people to do what they can to get on top of this disease early while they still have resources. It may take asking a church or family members to help you out to cover that first, very expensive appointment. I have approached my church to help a few people this way, and the church was willing.
I hope this can help some out there who are wondering what to do.
Ditto. Go for the first visit, even if it is 4 hrs away, then do phone consults. Well worth it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
regarding the new pharmacy rules - this is not the article I'm looking for, looking for the one that lists all the new rules: this will give you an idea about it though
posted
There is a major difference between going out on sick leave and disability and losing your job for taking too much time off.
If Lyme gets worse, I have the option of short term and long term disability. If I have too many absences before that should happen I could lose my job and not have disability available to me.
Posts: 250 | From East Coast | Registered: Jan 2013
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posted
The ACA starting taking place a year or two ago. It was not forced on the public to purchase insurance at that time.
This is why people are being questions about guns in their homes when they go to the drs.
This is why drs can only provide specific treatments to patients for specific illnesses.
This is why the hospitals are now fined if a patient is readmitted within 30 days of dismissal.
This is why many drs are switching to the new patient databases which are national.
This is why my husband cannot receive an operation that is needed, but has been deemed "non-life threatening". Without the operation once his issue becomes life threatening it is an emergency.
This is why a senior gentleman (80's), with a history of colon cancer in his family, was denied a colonoscopy "because he probably will only live another 8 years".
This is why some drs are not allowed to prescribe pain killers and patients must now see a pain management specialist in addition to their regular dr.
This is why a surgery for a woman with problems has been denied because it is "not life threatening" and will live on Cumadin for the rest of her life instead.
These are not stories I have found on the internet. These are true stories that involve both my friends and family! ACA has kicked in with their rules and regulations for drs and pharamacies and patient care!!! I'm not talking about the "insurance" plan, but about the new rules being forced upon us.
Posts: 250 | From East Coast | Registered: Jan 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would treat for parasites if I were you. Check out THE PARASITE WARRIOR'S THREAD. They are a major player in why we are all sick.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "why people are being questions about guns in their homes when they go to the drs." (end quote)
This question is to help with gun safety measures & education for safe keeping (partly to protect minors in the home, etc.).
ER doctors got tired of scoping up tiny tots hurt or killed from unlocked guns and have pushed for this effort - for education. Also to make sure that the patient is doing okay themselves, mentally. If not, offer help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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