She told me regular antibiotcs are not going to do much since my symptoms have gotten so much worse the past month and half. All of which are nurological symptoms.
Hard to stand up, twitching, tremors, constant shaking and head pressure, numbness and burning
She said i need IV. There is no way I can afford that. My dad is unemployed and we are a family lf seven living off his cridet card.
I don't know what to do. I am getting worse and worse
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
You have to see what insurance will pay. Otherwise, you can get it through Infuserve.
Your family has to sacrifice to get your life back.
My husband and I sold everything of value, moved back to my hometown and on and on to pay for treatment.
Yes it sucks and shouldn't be this way. However, your treatment is just as important as food at this point.
My saying is: We don't eat, we die. We don't treat, we die.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ema,
I was told the same thing and also could not afford it. At the time the manufactuer of Rocephin donated the IV RX to me but I had no way to afford getting the IV line put in or the supplies and nursing IV line check-ups needed for treatment.
I could take the disappointment easier and better face the fear & feeling hopeless knowing that IV treatment is no guarantee, anyway. I broadened my field of vision - to look at other ways.
I assume if you have any kind of insurance, you've checked to see if they might cover any part of this and since you don't mention that, I assume that's not an option. ???
While some companies have cut back on donated Rx, it's still worth checking.
There are other ways, though. Really. There is still hope.
Obviously, if your father is living off a credit card, supporting a family of seven and unemployed, there is just no more money. Still, that does not have to be the end of the world, even if really rough.
He can't sacrifice what he doesn't have. It's imporatant to let him know it's okay. Maybe family can help brainstorm. There are other ways to show love and support.
Do you have anything you can sell? Any other ways to cut corners?
GET AN ADVOCATE. Do you have someone who can research and advocate for you regarding any patient assistance programs? Start with your lyme support group - and your LLMDs office. Ask around to see if there is such a person who might just love to help with creative approaches.
RIFE SHARING - Do you know anyone in your lyme support group who might be able to let you use their RIFE machine?
Can you afford even ONE supplement? If so, as I've been in that boat, I can suggest a few different ones that can at least help.
Is the lining of your stomach tender? I ask for two reasons:
Clean Diet. I also find that being gluten-free & dairy-free matters a great deal, as does being additive free. It may not "cure" lyme but I know I would not still be here were it not for avoiding those.
Gluten can cause all the problems you mention. Indeed, lyme complex is likely the cause, too, but gluten can cause serious neurological symptoms and even brain damage. So, just want to be sure you know how important it is to avoid that.
and
GARLIC? If you might be able to tolerate one or two cloves (smaller almond shaped pieces of a whole bulb), this might be able to help some and it's very affordable - but it would need to be organic garlic. And, if your stomach lining is irritated, this might not be a good idea.
If taken in the middle of a meal, it's easier on the stomach, though.
HERBAL GARDENERS might be able to help you, too. Talk to the gardening groups nearby.
Some naturopathic or acupuncture sliding fee scale clinics sometimes get donated supplements. Again, your lyme support group is the place to starting asking about such options.
Still, there are always other ways to approach this. -
[ 05-21-2013, 05:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Keebler, you are right.. they have nothing to give up.
I do have insurance, they barely cover for oral drugs, but we are checking if they'll cover at least portion of the treatment.
Boxermom, speaking of my fiance I was just talking to him. He said he'll pay for my ticket to go to the middle east and get IV antibiotics, he checked with the pharmacists over there and the treatment is so cheap compare to here.
The only problem over there is there is no LMDD, so I have to treat myself on my own. I can buy the meds over there without a prescription. So, I am kind of scared at this point.
And speaking of Oral meds, you are right. I should be on something. It's just that my digestive system is out of control, it's barely digesting the food.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
luvema: if you were to go to the Middle East to be with your fiance, you could still have Skype sessions with the Dr K ART practitioner. That way you wouldn't be treating on your own.
posted
I am still afraid of the whole middle east thing... but if there is no other way for me to get help this would be my last option. I don't understand why meds are so expensive here, and in a third world country where there is no technology and no inventions, plus they get the meds from america, yet it's so much cheaper.
It makes no sense to me at all. I just don't understand it. Why is the healthcare system so messed up. It saddens me.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Drug company greed and government subsidies for drugs in other countries is why medications cost so much here vs. other countries.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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There is a lot of natural treatmeants and herbalists. In fact, my mom's uncle works with herbs and treats people with them. I just don't think there is someone who is knowlagable about lyme disease that can help me out.
So if I want something, I have to look for it on my own... So having a doctor's guidence while I am there would be the best.
I am afraid if something happens to me or I need a new med or something, like what would I do at that point or if I reacted horrible to the meds...
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I don't know if this would work for you, but, a little known fact is that after insurance has covered IV for 28 days, or whatever it's cut-off is, you can do the following.
Buy the IV med from Infuserve America in FL, or another cheap source, and have Infuserve bill your insurance co under Major Medical (not under your pharmacy plan usually).
Your co will surely tell you, if you ask, that they won't cover it. However, in fact, they often do cover it. That is not a guarantee but it often works.
Another possibility: is it possible for someone to buy the IV med in the powdered form overseas, have it sent to you, and then either you reconstitute it (according to strict instructions), or
have Infuserve do it for you? I don't know what the customs situation is. Probably, it would have to be not declared to be a drug, and hope that it works.
It would be easiest to get a drug co to donate the meds to you based on need.
Posts: 3766 | From around | Registered: Mar 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Ema, I think the burning pain in your feet is neuropathy. If it is, you may be able to fix it with B12, Methylcobalamine.
The first time I took it, sublingual B12 worked in just a few hours. I took it every eight hours for the first two months, to relieve pain in my legs. Then I went to every twelve hours for several months, and now I'm taking it once per day.
You can also take a good B complex, to help neuropathic pain. Some Vitamin B's give me a stomach ache, but these are okay for me:
posted
I am in the same boat right now too. We are going to have to self pay because my most current Igenex test came up negative and I was told insurance won't pay without a updated positive test (my previous test was positive). We are not sure how we are going to be able to swing this?
I have used infuserve in the past and they are much much cheaper than any other company. If you find out any other options for help please let me know if you can.
Good luck to you
Posts: 76 | From IL | Registered: Oct 2010
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Infuserve and universaldrugstore.com is as cheap as it gets. I've priced all abx through them. Your best bet is either clinda or rocephin through them. Clinda is 500 for 60 pre mixed pressure balls, Rocephin is double that for 4 grams and 700 for 2 grams (30 balls).
You can also get Bactrim for 200 bucks (for 60 vials) but you'll also need dextrose which is another 150/mo. from universaldrugstore.com . Only prob is you have to wait 3 weeks to get it.
Burning in the feet is prob bart and that may help.
If you can somehow get the picc in, those are your cheapest options.
I don't get labs or go to the hosp or anything else my dr recommends. All money goes towards meds.
Unless you can afford more than that. Infuserve has a lot of abx for 1,000 to 2,000 per months each.
Absolutely ridiculous we have to do this. Especially when some of us have insurance and they still won't pay.
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
IM shots may be an option.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Sometimes docs bill for an unspecific or general bacterial infection to cover IV.
I'd also look into if you could go to a local hospital or clinic and just get an infusion daily (takes about 45 minutes). That way you don't pay for a port.
Posts: 2839 | From California | Registered: Jul 2012
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posted
If you mix drugs yourself you can do various IV protocols for less than $300/month paying cash and shopping around.
Posts: 120 | From MA | Registered: May 2010
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posted
My dad is trying to borrow money or do something to at least get me started on something. We are trying to see if the insurance will cover a little. Anything helps at this point.
My fiance got hold of someone to help me out in the middle east. The whole treatment is covered under insurance over there. The insurance is 200 dollars for the whole year.
I might get started over here, and go over there to continue the treatment.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by luvema: My dad is trying to borrow money or do something to at least get me started on something. We are trying to see if the insurance will cover a little. Anything helps at this point.
My fiance got hold of someone to help me out in the middle east. The whole treatment is covered under insurance over there. The insurance is 200 dollars for the whole year.
I might get started over here, and go over there to continue the treatment.
Wow, Ema, the whole treatment is covered there with only $200 per year for insurance??!! That's unreal!
I understand that you don't especially want to go there now, but wow. If you did (not saying that you should or shouldn't), you could have Skype consults with an LLMD.
You should get the best LLMD that you possibly can here, though. The right doctor is absolutely key.
Yes, Infuserve is usually the cheapest. Except as someone said, you could get the powdered med, say rocephin, and mix it yourself, as that would be cheapest.
Infuserve doesn't like to do this (although they might under your circumstances), because the have a strict "clean room" that they use to mix the meds in. And they don't like to risk having
patients mix them themselves. However, lots of patients do, because they need to financially. You could surely get the powdered med fairly cheaply somewhere else, if you didn't get it from Infuserve.
If you do use them, be sure that they send the meds the cheapest way that is do-able for what they are sending, ie, the cheapest way, if they send the powdered meds, or afternoon
delivery, if sending the meds in the syringe already. The meds are the cheapest in the syringe, if you get it premixed.
I don't think that your insurance co can deny you one month of IV abx. ANd, yes, if your dr could write it up for something other than Lyme, then it would likely be covered much longer.
You don't have to get it in the home pump balls, they are much more expensive. I'll PM you another solution.
Your symptoms are terribly worrisome. IV is definitely needed, as you know. But do make plans to see the best LLMD you can find.
Posts: 3766 | From around | Registered: Mar 2008
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-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Just to reiterate what I said last night: if you could get a drug co to donate the meds, or give you a huge price break, based on how sick you are and financial need, that would be the cheapest by far!!
Posts: 3766 | From around | Registered: Mar 2008
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posted
As of now I am going to be on oral antibiotics until I figure out the IV thing
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It would be surprising if your insurance didn't pay for the first month at least. But you'd want to figure out what you would do after that beforehand. One month would be quite insufficient.
Posts: 3766 | From around | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It worries me that people are suggesting things that might get someone in trouble. This is a public board. If you are suggesting anything that trolls might pounce on, please send it by pm.
Posts: 2888 | From USA | Registered: Mar 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Ema - are you sure your ins.co. won't cover the meds?
Some injectables are denied under pharmacy benefits but are covered under the medical benefits.
I found that out the hard way in regards to Bicillin injections.
Worth asking about.
FWIW Bicillin-LA is a muscle injection. Rocephin can be administered IV or IM (muscle).
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Ema, I don't know your specific details so I apologize if this has been asked before. Did you cut gluten and sugar out of your diet?
I ask his because I was having some similar experiences and cut gluten (mostly) and am feeling better. Yesterday I had a gluten binge to test if it was, in fact, gluten and I'm sitting here with neuropathy in my hands and feet, face twitching and a bit of a foggy brain. All of this hasn't happened in so long, so I deduce that gluten is a problem for me. It might be worth a try, if you didn't already cut it out.
Good luck! My best to you.
Posts: 274 | From United States | Registered: Feb 2012
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