Described my symptoms-open heart surgery,etc. Please read my earlier post.
They told me that this is very serious-that this will kill me soon.
I have no way to pay to get treatment-I guess there are no doctors that will see you with no money.
I was told they do not even take Medicare and Medicaid.
It cost 900.00 to see -that is who they said I would be referred to since I am so sick and my case is so complicated.
Do Dr's let people die?
Does anyone have any suggestions.Please help!
[ 03. September 2008, 05:01 PM: Message edited by: astriapage ]
Posted by sixgoofykids (Member # 11141) on :
I would call Dr. J and see if he has a credit plan. I've heard of a thing called "carecredit" that is available for medical bills. You might tell him about your situation ..... I don't know what else to do.
Is there someone you can borrow from?
I agree that he is the one you need to see if you have a difficult case.
[ 03. September 2008, 04:23 PM: Message edited by: sixgoofykids ]
Posted by astriapage (Member # 17120) on :
My parents are tapped out-They tapped into funds-thousands to already help me-I owe over 1 million dollars in medical bills. My credit is ruined.
Posted by Clint31 (Member # 16420) on :
what does this have to do with lyme disease...
Posted by JasonK (Member # 14071) on :
1 million dollars?
Posted by Clint31 (Member # 16420) on :
forgive me if i'm wrong, but I smell a rat.
Posted by lymie_in_md (Member # 14197) on :
I think Astria is straight up. But let me get this straight, the large amount of money your parents spent was for the open heart surgery. And you just discovered you have lyme, is that right?
Posted by merrygirl (Member # 12041) on :
I cant picture a doctors office telling you that you were going to die soon. That doesnt make sense. A receptionist or doctor can not tell you that on the phone.
Are you yanking our chain?
Posted by astriapage (Member # 17120) on :
I am not yanking your chain-the nurse said given the severity of my case-high fevers, fatigue, bells palsy, severe pain etc. that something was very wrong and if I did not get help soon then I will be in trouble. I was in a coma from 105 degree fever before my open heart surgery-put on 6 weeks of IV antibiotics-then had my surgery. My parents are tapped out due to having to pay for doctors visits, medicine and gas to take me back and forth to the hospital everyday to get IV treatments since I did not have insurance to get a home health nurse. Do the math it adds up.
All the cost that I have been through: Past 6 months alone
3 weeks in ICU
6 weeks of Vancomycin, Casposungin and Levaquin in Hospital Outpatient at a rate of $30,000 per week
Open Heart Surgery-do the math on that alone
God knows how much I owe for lab work
Another 3 weeks of IV antibiotics
Plus all of the doctor bills for the past 3 years-I have also been admitted to the hospital 5 times in the past 3 years trying to diagnose this problem.
I really hate I had to break it down like this.
The girl I spoke to at the doctor's office had Lyme disease herself-she was very understanding-I know she was trying to make a point that I needed help soon! I really can not believe that someone accused me of being a rat. I thought this was a support forum-I guess I thought wrong.
Posted by merrygirl (Member # 12041) on :
astriapage-
My appologies..
I hope you get help soon.
Melissa
Posted by lymie_in_md (Member # 14197) on :
Astria, please understand many of the supporters you are looking to for help are under attack and our guard is up. We have to worry who really is looking for help and who wants to make our lifes difficult.
Also people tend to be very specific here about diagnosis. There was little from your information that you had lyme up until the last post. The last information provided by the nurse to you would resonate with all of us.
I really feel bad for your situation, you didn't realize you had lyme until the nurse said you're in big trouble, am I correct?
So internally what your grappling with is the failure of 3 years of conventional medicine not finding the root cause of your problem. And possibly treating you with an incorrect diagnosis.
So where do you start, first find a good support group in your area.
What to do prior to seeing a lyme practioner. It is matter of what your situation is right now.
I'm not sure what to do if you have no means to see an LLMD. If you want to PM (private message) me, I can help further. The PM is an icon above this reply.
Good Luck
Posted by feelfit (Member # 12770) on :
Call the Doc back. Doc J. plead your case. Ask to speak to him or his office manager. I think that no doctor worth their salt would refuse to see you if you are as sick as you claim to be.
there has to be some kind of payment plan etc. that you are able to work out.
best to you, feelfit
Posted by astriapage (Member # 17120) on :
That is why I am on here-
I am so baffled how doctor's can just stand back and do nothing-
I pleaded with the girl I spoke with this morning-crying-I felt like I was begging for my life. How do you get through to a doctor?
I have failed to get a positive serological diagnosis-which they have not done an Elisa yet either-I currently do not have funds.
It is all based on clinicaldiagnoses-I am waiting on a call from the ID doctor in Charlotte NC who treated me after my open heart to see if he is open to the possibility?
I just got off of the phone with the other ID doctor that I have, and he said that I definately have the clinical diagnosis but without a definate serological he does not treat at all. I asked him about the unreliability of the tests and he said that is just the way it is.
He said if he does treat it is just 28 days of IV Rosephin-since there is so much debate about the length of antibiotics and I have already been on 9 weeks of IV infusion and it got me nowhere.I want to scream!
I have just been told many times that all signs and my symptoms point to Lyme-and I was reaching out to you guys for help-I am living a nightmare that I can never get out of.
Speaking to the nurse this morning just really freaked me out. After you have been so close to death and open heart surgery too, I just want to live and most importantly I want to live a productive life.
Thank You for Any Advice
Posted by Melanie Reber (Member # 3707) on :
Hi SixGoofy and Astriapage,
Would you both please delete the doctor's name and use only an initial?
Thanks so much, M
Posted by astriapage (Member # 17120) on :
As far as I know I never mentioned a name in my posts-it is in 2 other peoples posts-please let me know if I am wrong.
Posted by 1Bitten2XShy (Member # 12280) on :
I do not know what part of Fla. you are in, however, there is a LLMD in Tampa area who has a program specifically for financial cases such as yours.
Posted by Melanie Reber (Member # 3707) on :
First post, 6th line. "It cost ....." Thank you. Posted by sixgoofykids (Member # 11141) on :
How old are you? What about the Dr. J in CT if you are young (under 18)?
Posted by astriapage (Member # 17120) on :
I am sorry about the name-I guess when you are so deathly ill you don't notice things like that
Posted by Vermont_Lymie (Member # 9780) on :
astria,
Sorry to hear about your situation.
If I were you, I would get myself quickly on some inexpensive oral antibiotics, like amoxy, until you can work this out and see an llmd.
I am not a doctor though and this is just my opinion as someone who was very ill from years of untreated tick-borne diseases.
Hope you can work this out soon and find a doctor who will take medicaid. There must be an llmd who does, but I do not have a name.
Posted by astriapage (Member # 17120) on :
How long were you sick before diagnosis-what were your symptoms-
I have maybe found a doctor in my area who will maybe treat me on a charity basis. I am calling tomorrow-
I would be so grateful if so.
In meantime I am going to e-mail my Cardiologist to call me in ABX-if he will-which is better?-Amoxicillin or Doxycycline-are they both cheap?
Posted by sixgoofykids (Member # 11141) on :
If the doctor is an LLMD, I'd let him figure out which is better for you to take.
Otherwise, yes, I believe both are inexpensive. Doxy will hit some coinfections that amoxy doesn't, but amoxy is also good for Lyme (I took it for five months in a combination protocol).
At www.ilads.org you will find Dr. B's treatment guidelines. They are an excellent resource for the various abx used in Lyme treatment.
Posted by Vermont_Lymie (Member # 9780) on :
Hi astria,
I totally agree with 6kids answer above about which abx to take.
My symptoms were virtually all on the lyme list (see the newbie links above)! Bad cardiac and neurological symptoms, along with muscle and joint pain and crushing fatigue.
Most thankfully gone now with antibiotic treatment. Hope you get better soon.
Posted by lymie_in_md (Member # 14197) on :
TSN003 -- crying for support and giving support all within the same week. I think we all should tip our hats to the newbie. I think BettyG could get a tip or two from you as well. Posted by Lymetoo (Member # 743) on :
Can you get this doctor to send in bloodwork to Igenex Lab in CA?? The ELISA is worthless for finding Lyme disease.
You need test #188 and 189 from www.igenex.com Posted by Keebler (Member # 12673) on :
-
Quote: " . . .They can't believe that doctors would be so cruel, and THEY CAN BE. . . ." end quote.
---
Doctors cannot treat everyone. We need more good doctors. The problem is that there are so few good ones in this specialty and the medical system is terribly broken.
Most of the the LLMDs are very kind-hearted and work very hard and long hours.
They are not cruel by any stretch of the imagination.
-
[ 04. September 2008, 12:02 AM: Message edited by: Keebler ]
Posted by GraceT (Member # 16558) on :
Hi Astria: Truly Pray for You - Hope - Try to Hope. There is a crisis healing center in Scottsdale, AZ, which I've heard takes desperate cases.
Dr. K is my LLMD/ND and he spends two days per week at Envita. PM me and I can give you his phone number.
Hey Miss Betty ~ I so admire you! I'm new and this forum is my guiding light.
Heck - I figured ol' Bob was just teasin' ya - at least that's the way I read it. But then, I'm pretty simple minded these days.
. . . . . . . . .
Keebler ~ T.U. for the communica's ~ You make me Smile a lot!
Posted by astriapage (Member # 17120) on :
Hello Guys
I now have s severe sore throat, but it feels like it is deep tissue-more like my glands-it is killing me.
And for the past couple of days, I have had what I guess is a bladder infection. It is also very painful.
Well, I just went digging through the medicine cabinet and found 42 100 mg. of Doxycycline-I have already taken one.
This was left over from when I first got really sick and they ended up putting me in the hospital and stopping the doxycycline.
The only problem is that they are 2 years old. I am desperate right now-as many of you know.
I am also scared from what I read of the herxing-but also excited if that makes sense. I am desperately seeking an answer-so if I herx then...
I am experienced enough-seen many people why I was getting my IV infusions very sick from what started out as a bladder or kidney infection.I was told that they were septic.
My friend is going to bring me some cranberry juice later on.
You know looking back, many times I have had blood in my urine, but they could never figure out why.
So bad one time-they rushed they immediately put me in the hospital.
I guess it could be from the bartonella.
What is up with my neck or my glands killing me?
I am also going to e-mail cardiologist to see if he will call in antibiotics also, until I can figure out what to do.
Also going to call LLMD in my area today...
Man, if doctors read these posts, surely to goodness they would realize how bad we suffer!
If anyone has any comments on the Doxy it would be appreciated-is 2 years to long-is it expired?
I know what a doctor would say-
Posted by KS (Member # 12549) on :
Regarding the expired doxy...don't take it. I work in the pharmaceutical industry and can tell you there are good reasons why drugs expire....sometimes because they lose their potency but other times because there are degradants that can actually be harmful. In my experience, the longest expiration date is established as pharmaceutical companies do not want to throw drug away or have to manufacture multiple batches....meaning, there is reason for why they expire.
Posted by sixgoofykids (Member # 11141) on :
If you go to urgent care you will most likely test positive for a bladder infection and get a little abx.
I had very bad kidney pain, 102 degree fever, etc. and took colloidal silver for it. My chiro made me promise to go to an MD if it didn't work in a couple days, he considered it an emergency. This was prior to diagnosis and I was tired of being told I was a hypochondriac.
Anyway, the silver worked. It held off some of the Lyme symptoms. I took it for a couple months, but have always respected it ..... ie, don't take a lot, just tsps.! Also, I never made my own.
I'm not suggesting silver is the best way, it might just be something to help you get to the LLMD appt. without feeling so bad.
Posted by just_ma (Member # 17111) on :
I'm very sorry about your trouble getting to the LLMD, and I so very much understand the panic your feeling.
I just wanted to add some suggestions quickly this am (heading to doc appt)...
If you are under 18 there is a program called "Lyme Aide For Kids". I dont have the info on hand. Maybe someone else has this right now. Dr. J. in CT also has the info...
They can help you with up to $1000 in medical bills for lyme.
Also, another suggestion as far as the doxy goes. Doxy & Minocycline are standard treatments for acne. My family has used this avenue for lyme treatment in the past in emergencies for treatment.
The Ducks seem to have no problem perscribing for acne, when they'll give you a fight and no script for lyme.
Hugs to you, Just_Ma
Posted by astriapage (Member # 17120) on :
well i guess i am waiting to hear from the cardiologist then-i am so sick-i do not have the money to go to an urgent care-
i know that i have the er-but here that is a joke-went 6 months ago-105 degree fever-rushed by ambulance-
they did routine bloodwork and sent me home-what a joke
i really want to take the expired medicine-
i just watched the frontline report on pbs-it is so hard not to get mad
sorry this in all lower caps-i have been truly laid on my back-
man i thought i was bad 2 days ago-its like god is testing me
i forgot to mention also that half of my mouth is apparently infected-like the roof, gums etc.
thank you so much for listening to me god bless you all-i hope to one day be able to come back here and help people like me
Posted by lymie_in_md (Member # 14197) on :
Cheap simple things you can do without a doctor (and I am not a doctor) and do quickly to bring down the infection. That's why your glands are swollen.
1. Get some organic garlic at a healthfood store. 2. Get a good plain cultured yogurt 3. At the health food store get some activated charcoal and apple pectin 4. Get some cats claw
all of this is under 50 dollars.
After a meal chop up the garlic let sit for 5 minutes then eat it with a couple of tablespoon of yogurt. This is very antimicrobial. Chew it slowly, you want some of the allicin to move through your salivary glands.
In between meals 2 hours after and before and any meds take 4 capsules of the activated charcoal. 2 times a day. apple pectin two tabs before a meal.
the charcoal and pectin is to reduce herxing. the garlic is to reduce the infection. the yogurt is probiotic but will make the garlic palatable.
As far as bladder, look into a good prostate supplement.
Hopefully there are others who can give some simple cost effective ways you can move more quickly on this. It will take time to organize help with a practioner for a more permanent protocol.
Hope this helps.
Posted by astriapage (Member # 17120) on :
i just wanted to mention-
thank god for my dog-jack
he is always right by my side no matter what
i am sure some of you know exactly what i am talking about
Posted by merrygirl (Member # 12041) on :
Maybe you should try to go to the ER? I know it sucks there most of the time. You sound really sick and maybe they can do something. You just had heart surgery they have to take you seriously.
Good luck, Melissa
Posted by astriapage (Member # 17120) on :
right now i have noone to take me i am all alone-i would have to call an ambulance-dont want to do that
Posted by seibertneurolyme (Member # 6416) on :
I read in one of your posts that you were going to be moving soon? Especially if that is true you need to get copies of your medical records.
Some docs and hospitals charge a small fee and others will give you one set of records for free. Of course they will always send a free set to another doc.
You need to find out what you have been tested for and any other abnormal things found during testing. It could save you lots of time and money if a new doc does not have to repeat things.
What you should try to get are copies of all labs, copies of reports from any other test results (x-rays, MRI's, CT scans etc). Also copies of office notes and from the hospital -- history and physical and discharge summary from each hospitalization during the last 3 years since you first got sick.
Do you have a lawyer to help file for social security disability? Do you know why it was denied the first time?
One of the best supplements for the heart is CoQ10 -- often used for congestive heart failure -- but it is expensive. Taurine (an amino acid) is also very good.
As for inflammation/infection there are lots of herbs or spices which could help some -- fish oil is always good -- also things like oregano or olive leaf extract or turmeric.
Call a pharmacist and ask about the expired doxy -- I know tetracycline is unsafe past the expiration date, but not sure about doxy.
Good luck.
Bea Seibert
P.S. Blood in the urine could be Babesia. I don't think you have enough info to guess which if any tickborne infections you have.
Take this time to collect your records and make lists of symptoms and a timeline with meds used and doses. This will be very helpful when you get to a new doc.
Posted by astriapage (Member # 17120) on :
You know I really have no one to help me-and there is no way I can pay for the records-I do have copies off all of my labs that were done during my infusion-but that is it-and they charge a fee of .75 a page-my file is so thick just at that one hospital-
i was denied disability on the fact that my heart condition and the pain i am in-esp. the pelvic pain was not projected to last longer than 12 months?
Posted by gettingbetter (Member # 15306) on :
If you have no luck in getting antibiotics soon, you might consider $37 or so (if you can) for a bottle of Samento. One website promised 2-day shipping.
It is a form of the Cat's Claw that was previously recommended.
Our doctor had Pat on it after giving up on 6 months of antibiotics. The results were not good.
But it worked great for our daughter and her friend for a few weeks. They had severe symptoms that were greatly relieved.
Then they ran out and their replacement shipment was delayed by a few weeks. When they started back on it, it helped some, but not as much as before.
A few people have reported relief of Lyme symptoms ranging from short-term to long-term.
Here's a link to an article on Lyme and the use of Samento.
Astria, I just wanted to send prayers for you hon.
Posted by Keebler (Member # 12673) on :
-
BettyG,
about the post above by lymie_in_md on page one of this thread
- it was a compliment to you - saying that no one can hold a candle to you.
so, you have the background, the links and the heart - to be a great source for someone new here and for those not so new.
Your skill and dedication is held high.
I so appreciate all you do here for a fair and balanced approach.
-
Posted by lymie_in_md (Member # 14197) on :
Keebler is right betty, noone can hold a candle to you, you are the best. I sure didn't mean that as a cheap shot at all, I appologize if that's how it cam across. Posted by bettyg (Member # 6147) on :
i deleted my earlier post to you bob; it's gone for good.
bob, thank you for your kind words!! i mean that; i have been bashed for 2 days straight on general ... so that is where i was coming from when i said that. see my post over there and 2 there they started.
my apologies to YOU for jumping on you bob!! i'm sorry i misunderstood.
keebler, thanks so much as well. my feelings have been hurt, and i was smarting from the attacks.
bob, thanks again for posting and clearing that up! beddy-bye time!
[ 08. September 2008, 03:12 AM: Message edited by: bettyg ]
Posted by merrygirl (Member # 12041) on :
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![[group hug]](graemlins/grouphug.gif)
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