posted
I'm trying to get diagnosed and treated, and I just can't afford to wait while every plays "hot potato" with me, passing me off to the next guy and the next guy.
I CAN'T FIND an LLMD who will see me before this thing gets any worse. Key point being, I CANNOT WAIT any longer to see a doctor who will treat me for Lyme Disease.
I belive I may have caught this before it becomes CHRONIC, and if I WAIT any longer it might be TOO LATE!!
I know of a family doctor who will prescribe pretty much anything you ask him for. I am thinking of seeing this doctor either today or tomorrow and ask him to give me a 30 day dose of some strong antibiotics.
WHAT SHOULD i DO???
Posts: 156 | From Virginia | Registered: May 2011
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posted
If you think its Lyme -- 100% go and get the antibiotics. I wish I would have - it is chronic for me.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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I don't want to take the chance that another doctor will say "it might be fibromyalgia or CFS" because I'm not presenting WITH a rash (even though I HAD the rash and was too stupid to realize what it was at the time). Like I'm making it up to get antibiotics? LOL!
I am making the appointment right now!
Posts: 156 | From Virginia | Registered: May 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
If you remember seeing a bite, that will be helpful. Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thanks, apljack. I DO remember seeing a bite! I even recall doing intensive Google searches for "huge bug bite" and thinking it couldn't be Lyme because it wasn't a "classic bullseye"!
So far the "remembering" hasn't helped much. All the docs I've seen want you to PRESENT with the classic bullseye in order to earn your precious 2 weeks of doxy! In my case I'm sure it is far too late for 2 weeks of doxy to work (it didn't, although I did have what I think was a herx reaction to the doxy) but possibly early enough for a month of something stronger to be effective.
I'm learning to be an assertive patient, too! No more sitting quietly and waiting for the doctor's opinion (which usually turns out to be "I don't know", anyway!)!!
Posts: 156 | From Virginia | Registered: May 2011
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lymeboy
Unregistered
posted
if someone tells you "Fibromyalgia" - turn and walk away. I agree with Hause, get the antibiotics any way you can and do what you can until you can get in to see a LLMD. Consider traveling out of State, there isn't a whole lot of Help for Lymies in VA. You might consider a few Docs in MD that are supposed to be very good. The "seeking a Dr." page could point you in the right direction, and I know of a few Maryland folks here who love their docs....
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posted
i would check out the seeking a doctor section of this website...someone there will help you find an llmd. Some llmds will even be covered by insurance if that is an issue. Have your doctor write a letter of medical neccessity for lyme treatment. Good luck, its never too late to start treating
Posts: 113 | From south dakota | Registered: May 2011
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posted
Well, as it turns out I am "not allowed" to see a doctor that's out of my insurance network and pay out of pocket. What hideous reason exists for this I cannot even begin to imagine.
So... I'm back to square one. A doctor who is no help, even in obtaining referrals, and now the complete inability to see any doctor but one who will accept my insurance (VA Premier, which is a medicaid group plan so the wait times to see any doctor are insane and that's IF you can find one who is accepting patients).
I guess I will just lay down and die now.
I had to resort to sending a Facebook message to the young doctor from the ER who prescribed me the two weeks worth of doxy in hopes that maybe he could help me, somehow.
Our health care system is a COMPLETE FAILURE.
Posts: 156 | From Virginia | Registered: May 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
How can an insurance company keep you from seeing someone outside your network? That is your own personal business. I'm sorry, but I don't understand. If you pay out of pocket, how will they even know?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I don't understand, either. The way it was explained to me is that it's illegal for the doctor to accept a cash payment from me because I am on Medicaid.
It's not Medicaid, though, it's the particular Medicaid Managed Care Organization that I'm enrolled in.
Apparently because I'm POOR enough to qualify for Medicaid I should also be TOO poor to be able to seek medical care with my OWN money (even though I'M NOT, someone else is paying for it! I don't HAVE any money!) when I'm SICK and need help that I am not getting from the "in network" providers because they are "too busy" to help me!
It's disgusting when you think about it, really.
Posts: 156 | From Virginia | Registered: May 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Anonymiss, I just ask my daughter who works with insurance in a physicians office, and she says its not illegal for a physician to accept cash from a person on medicaid. She said sometimes ppl use up their amount of times they can see a doctor per year and have to pay on their own in that situation. She said some have co-pays and have to pay cash in that situation. She says it is untrue that it is illegal.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
If I were in your shoes, I'd get the ABX.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with Dawn. I became chronic and have been treating for 3 years. No fun! I would get the ABX no matter what I had to do.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks, sutherngrl. I just got off the phone with my MCO and the Department of Medical assistance and they both tell me the same thing. I cannot go to any doctor I want and pay out of pocket because they are not allowed to accept payment from me.
I'm stuck trying to find a doctor IN my network or someone who doesn't accept insurance at all
Posts: 156 | From Virginia | Registered: May 2011
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posted
Go Immediately and do not risk it. If he will give you any scripts make sure you get several different antibiotics because, along with lyme you might have babessia. Babesia is more of a parasite so antibiotics will not help. I am not a Dr. but very knowledgeable with this disease.
Get on 400 mgs of Doxy(200 2x a day) Get on Mepron or Malarone for Babesia Take Flagy the third week and six week to bust any cists. Take 500mgs for three days each week. Find a Biofilm buster like protease, boulouke or so on. Keep perfect help and get full blood work including a full hormone panel! Trust me!
Stay away from pain killers unless absoluotely necessary. Don't drink and have a low fat diet. DO NOT let this become chronic!!
Contact me privately if you would like, but do not chance it!
IV antibiotics would be best but that is a lot more involved.
Posts: 80 | From scottsdale | Registered: May 2011
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posted
I don't know who is telling you that you can't pay with your own funds. This is what I found at an Atlanta legal aide website - http://www.atlantalegalaid.org/medicaid.htm
Scroll all the way down to the second to last heading. It tells you that you can either go to a doctor that accepts Medicaide OR pay yourself.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Well, I can definitely see how this DOES become a chronic infection.
No luck with any of the LLMD referrals I've gotten so far. I've called at least 12 and nobody is accepting new patients or can see me until AUGUST, when it will certainly be too late.
I give up. Maybe it's not Lyme and it will just get better on its own.
Thanks for the help, everyone.
Posts: 156 | From Virginia | Registered: May 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would try and find a doctor that would give me a few weeks of antibiotics, then find another one after that if I had to. Maybe you could find enough to last you through August.
Its a shame that so many doctors refuse to treat Lyme Disease and allow patients to become so much sicker that way. But thats the reality of this illness.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Would your doc be willing to do the igenex blood test for you? That is a pretty simple procedure....in a perfect world....
But it might get you started getting your information.
Write all your symptoms down each day. I didn't start right away and, my new favorite saying, "I FORGOT"
Blessings....hang in there, I went thru the same rat trap to get started.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Buy them from Mexico / India / wherever... there are lots of sites, and if you're not using insurance, it's probably cheaper anyways.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Ditto on what thehause said...if I had known eleven years ago, what I know now...I would of gone south of the border to obtain abxs right away. It is serious, serious, business when you are denied abxs and you suspect Lyme disease...they are hundreds of people on here that can tell you it is probably the most important thing you can do for yourself...get the abxs.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Ugggh...This is so sickening. Anonymiss, I will be praying diligently for you and for a doctor to become available. There is a LLMD here in Southern California that works with those without money to treat lyme. If you're interested, PM me. I know its far but maybe she could refer you to someone she knows out your way. I don't know. My heart is breaking for you. I Do know that we can claim any of God's promises. Ps. 6:2 "Be merciful to me, Lord, for I am faint; O Lord, HEAL ME, for my bones are in agony. My soul is in anguish. How long, oh Lord, how long?....Turn, O Lord and deliver me; save me because of your unfailing love." That is my prayer for you. Keep us updated. Much love to you.
-------------------- Blessings to you! Posts: 141 | From Southern California | Registered: Mar 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
It so saddens me for you guys trapped in this web with no doctor support. I can't even imagine your fear.
I was truly blessed 10 days after my world was turned upside down. I told my PCP that I'd seen 2 times prior in HMO office...I've got food poisoning.
He said tell me about it and said no not food poisoning but have you been bite by a tick. No not that I know of. He had lived in one northeastern state(RI ?) and he knew lyme sx.
He said your sx could be lyme disease. Don't worry you are in early stages and abx will take care of it. Gave me doxy by the text book 200mg a day.
One week later I was back crying you've got to stop this whatever it is. He threw amox on top of doxy 3000mg. One week later I'm boo hooing again and he tried me on z-pak. OMG
He was so worried that he sent me to a ID duck. Well that was a joke. My PCP sent me to rheumo and that was a joke.
We knew we were on our own. We didn't realize that 6 mths before flu-like illness from he!!, my knees were early lyme.
We didn't know that the chiggers 12 bites that I covered with clear nail polish 3 weeks before flu from he!! were deer ticks or nymphs.
I didn't know what I covered with clear nail polish or report to PCP that I had the bites until I had little bulls eyes, faint but about 4-5 on my belly weeks into the abx.
They lasted about 10 days and disappeared. He ws throwing everything at me including the kitchen sink but I was chronic from day one of flu he!!
He fianlly ran more tests and I came back EBV positive. Aha that's why you're so sick. I think lyme disease is no more. Stop the abx. Don't work for month.
Two months later I went to him and I had like 42(?) sx of lyme disease. I said back on the abx and let's try biaxin.
Still negative on 2 lyme ELISA and he said we've got to stop this illness. He tried he couldn't and he has been with me since. '98-'99 Nightmare of He!!.
When I got highly positive IgM 2 yrs later I thought my PCP was going to do a dance. Finally he could say on dx list Lyme Disease as my illness and not possible Lyme Disease.
So for you that haven't had a great PCP along this journey with you....I'm so sorry. That's why I fianlly tried LLMD for 2yrs.
He tried too but abx wasn't my cure or friend anymore after 3 yrs and even some IV.
I hope anyone seeking a doc with half a brain find one soon. Don't give up on LLMD. Go there too.
Try traditional meds. Do whatever you have to do to survive and fight this illness called lyme & co.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Who the heck is going to know? You could even give a false name and pay in cash if you are that worried. It is your life you are talking about. Get the ABX.
By the way you need to have 400 mg doxy a day for at least 2-3 months. Ask for as many months as the GP will give you - 6 would be great.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I have never heard of that..If it is true and it were me I would not mention I have insurance. Tell them you have no insurance and are a self-pay.
I would ask to see where in the contract it states you cannot see any doctor you wish - assuming you pay out of pocket.
If all else fails go the the local CVS walk in clinic with sinus infection symptoms and tell the NP that only Doxy has worked for you in the past.
If it were me I would do that or get my meds over-seas.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Thanks, I know, it doesn't sound right. Unfortunately it is a state law that a doctor's office cannot bill a Medicaid patient. It seems like this should be easy to get around by simply billing someone else (my fiancee, for example, who is the one who is going to be paying anyway) but every office I have spoken with refuses to do even that.
Now I understand why the ER is flooded with non-emergency Medicaid patients all the time! It's impossible to find a PCP who can see you within a reasonable time frame, even when you're sick! Those people have no choice but to go to the ER, where at least they know they won't be turned away.
It's very sad when you think about it.
I've thought of going to urgent care and just telling them I don't have any insurance. I'm going to try one last ER before I do that, and if neither of those things work I am just going to order some antibiotics and antifungals online and do it myself!
Posts: 156 | From Virginia | Registered: May 2011
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