Being broke must be a death sentance

[Ephedra]

I have diagnosed myself with Chronic Lyme disease. I have absolutely no idea how long I have had it, but it seems to be effecting my brain. LLMD's do not take medicaid and I cannot afford them! I went to a random doctor for the first time in decades, and told him my suspicions. He then ordered an ELISA because there was apparently no other options. It's been over a week and I haven't heard anything so I suppose it was negative. I can't stand doctors! Why? Because everything always comes back normal! What happens when blood work comes back normal? I get dismissed. I don't play!! I don't enjoy hanging out at a doctors office like some people do. So I'm considering starting my own treatment. Does anyone have a medical treatment protocall they got from an LLMD? It would be MUCH cheaper to order my own antibiotics online than it would trying to get a proper diagnoses. I highly doubt that a regular doctor would even consider 2 or 3 years worth of antibiotics anyways.

The antibiotics for Lyme should knock out any co-infections too wouldn't they?  

Thanks!

[JackieCalifornia]

I hear you, but must disagree about a do-it-yourself approach.  Lyme is a complex infection, and half the time it comes along with one or more other infections (co-infections) that need separate and usually different treatment.  

At a certain point, you might be able to figure out an herbal approach to use to whatever you have (Lyme and/or various co-infections), but that will mean finding out from a doc what you do have, and becoming an expert in herbal meds and in Lyme.  You may also find out over time that you have additional hidden infections that were being masked by the others.  Not a DIY project.

Rather than assume that the ELISA test was negative a week ago, call the doc's office and ask when the results will be back.  Docs do not usually just file test results and leave it at that.

I know it's frustrating, but being charge of your medical situation means managing the other players, not trying to be an MD.  Lyme is definitely a team sport.

[Ephedra]

Thanks! I completely understand what you are saying. I also understand that Lyme test, especially the ELISA are incredibly inaccurate. From my understanding, some people have multiple negative Lyme test and only a LLMD has the sense enough to diagnose just based on symptoms. I don't want to go at this alone, but I don't want to end up in a nursing home either. Only I know what's really going on better than anyone. Particularly when they don't even know me. That's why they are so reliant on routine labs, which in my case were completely normal. I asked for those results but as for the ELISA, I figured the doctor would only call if the results were positive. How long do you suppose it takes for the results? I didn't really want to bother them at the office if I didn't have to.

Herbals are not proven and are quite a waste of money. I have blew so much money on that nonsense.  

It's difficult to accurately explain everything to an MD, particularly when I have a wide rang of symptoms that have been compiling for years. It kinda sounds like I'm a munchausen patient or something. He did order a CT scan with contrast though because of multiple protruding cyst from my scalp. They obviously showed up but they seemed mostly superficial. I'm not sure if anything Lyme related would show up on that or not. I haven't heard anything back on that either.

I appreciate your response!
Sorry if I sound like an ***!

[JackieCalifornia]

You don't at all sound like an *** (as the computer system spells it -- ha) -- you sound like a fighter, like a pro-active survivor -- and that's what it takes to beat Lyme and whatever evil little friend it brings with it to the party.

The people who curl up and give up are the ones who vastly lower their chances of getting well -- so you go, girl!  You're among friends here.

The question is how to best fight, and how to minimize your aggravation, suffering and cost while getting well as quickly and completely as possible.  That's the goal.

Be polite but persistent with the docs and ALWAYS get hard copy of the detailed test results.  I think by law you are entitled to receive full copies.  Docs who read results as negative are not likely to waste paper and toner on copying what they think are unproductive results ... but another docs down the road may read them differently, and you are the one to be able to carry that data to some future doc.  A later request for copies of what's in your old files may well be incomplete.  (Put yourself in the shoes of the file clerk at the previous doc's office who really doesn't care about your old records and has a budget for paper and toner and is late to get her nails done anyway.)  These are YOUR tests and YOUR future could depend on a future doc seeing those very pieces of paper.  Be polite, be persistent.  If I am getting grief or a stonewall, I go into the doc's office and stand there and smile at the person behind the counter and ask for copies of ALL test results in my file since X date, and I offer to pay for the copies.  So far no one has charged me for the copies.  They just don't want hassle and don't really care if I get what I am entitled to.  It's human nature on their part.  You are more important than that.  

Then going forward, never leave a doc's office without getting complete copies of today's tests.  Some doc's offices always hand them over, some don't.  Be polite, be firm, even lie and say "I have an uncle who is a doctor and he told me he would look at the tests but I have to get copies of them, and he's very stubborn" -- then smile and stand there until they fork over the copies.  Not next week or next visit.  You will never know what is in your file that they didn't copy.  Twice is better than not at all.  Keep them all in a binder in date order.  Never give your binder to any one (any future doc) except to copy and return to you THAT day.  End of lecture.  But you get the point.

The tests, no matter how inaccurate, can be useful in the hands of a future doc who knows how to read them in conjunction with your symptoms and history.  Repeat:  get copies of ALL of them, in full, not just the summary page.

Don't assume the doc will call.  Docs are human and busy.  You are responsible for your health.  Do it.  Follow up.

Keep ALL lab work, even the negative ones.  They are useful too.  I also keep copies of the lab orders before going to the lab.  Full set of everything.  Am I paranoid?  Yes, but I'm entitled.

Herbs can be useful.  Herbs are Mother Nature's pharmaceuticals.  Don't assume they are all useless.  Herbs and factory meds are ALL just chemicals, and sometimes herbs are better.  Pharmaceuticals are imperfect too.  If you know any chemists or science majors, how perfect are they as people?  NOT.

Call the doc's office once a week until you get or are mailed the test results.  Be proactive.  No excuses.  This is YOUR health.  No one will care as much as you do.

I am ranting at you here, because I want you to yank up your big girl panties and take charge.  You have to do this, esp. when it comes to Lyme.  I went through 20 docs before I got a diagnosis of Lyme and babesia, bec. I knew I was sick, and no one had any answers.  You must do this, or you have given up and let indifference rule your life.  

You are not indifferent, or you would not be posting here.  

Big girl panties.  Yank.  Go for it!  You can do it, and you want to, or you wouldn't be posting here.  

Keep us posted!  That's an order!!

[mojogal]

To add to Jackie's input, mainstream doctors may also misdiagnose you. That happened to me for 20 years.

Financially, my LLMD takes Medicare that I got from being disabled. Unable to work from Lyme and the co-infections.

I know how hard it is to be sick and not have money to pay.

Keep us posted!

[Ephedra]

I actually kind of thought the computer might allow that word since it is an animal, ha.. guess I was wrong. Anyway, I'm glad your not offended but instead very helpful. He did actually hand over my labs upon request without a second thought! I know how they do, something can be on the border but they're still normal. Like my CO2 ct was boarder low. Wonder how that would change with a little bit of motivation. I get outta breath very easy and I've never smoked in my life. I'm absolutely fine when sitting! I had one lab that I ordered myself with no doctor involvement and another one through this doctor. Gotta love computers! I was going to compare them but they were from two totally different testing facilities in totally different units with different reference ranges. Hopefully I can get a copy of my CT scan, but IDK about that one. I'm a huge social phobic, I do much better writing my life history than trying to explain it.

I wouldn't have the strength at all if it wasn't for my friend Addy (adderall). I wish I didn't have to rely on it but I do for now. My kids rely on me and I can't care for them or myself without it if I can't wake up. Only people that have been through the fatigue can truly understand. Sometimes I'm still afraid to go to bed, because occasionally I'll wake up 20 hours later. My kids are usually pretty good at waking me up so I can take it. They are the ones I'm fighting for!

If there was ONE inexpensive herb that was known to be effective, I might stick with it. If I didn't have to drink or eat something sickening because I will end up vomiting it up anyways.

Did you get your diagnoses from any special doctor? What testing gave you the answers? I was going to request a CD57 + NK but IDK. I don't want anything else to prove me wrong on my diagnoses as I've always been so healthy. I can't remember ever having the flu, or even a fever. I could be sick as a dog and not have a fever- ever! My temp is always good, my bp is always good, labs are good too. I wouldn't be surprised if I end up in the psych ward. I do have minor psychiatric issues but I'm starting to think that Lyme is the culprit. I do my best to keep a low profile of those issues though, even during my own investigations.

I definitely suspect Chlamydia Pneumonia for sure but there are most likely other co-infections involved as well.  

Thanks :)

[Ephedra]

Thanks mojogal!

WOW! 20 years! Kinda makes me more considerate of my original thought of self treatment.

Yeah, I did see some LLMD's that except medicare. I have medicaid, for being exceptionally poor. I wish I could have got further in my life, but it is what it is I guess. I just happened to be young when I began to have issues that left me unable to work. I just don't know where to draw the line between Lyme associated issues and normal issues that would have occurred anyways.

[JackieCalifornia]

There are too many moving parts in Lyme and its co-infections to try to diagnose and treat yourself.  You gotta have a knowledgeable doc.  

Also, not all labs are created equal.  It really does matter which lab the tests are done at.

Since money is an issue (not like it's not an issue for most of us), having a doc who can guide your testing and treatment will, in the long run, be cheaper, not to mention almost certainly faster and more effective.

You might be able to find a doc who will give you a reduced rate or let you pay over time, or borrow from family.  Lyme is not an occasion to let pride get in the way.  Some LLMDs may take medicaid, dunno.  

Motivation won't change your test results, CO2 or otherwise.  Lyme is a systemic illness, affects a whole lot of stuff, not just one system or area of the body, messes with the endocrine system big time too.  Also the coinfections like babesia, bartonella, ehrlichia etc. have their own tricks and symptoms and often need separate treatment, so there is no magic bullet for all of this.  

Borrow from your family if you have to, ask the doc's office if you can pay over time, ask if they will give you a break and accept whatever ins you do have -- whatever you have to do to get treated.  Some people who can't swing any of those approaches go strictly herbal, and it may help, dunno, depends on a whole lot of interconnected aspects that are not obvious.  But first you need a diagnosis.

Lyme is not a do-it-yourself project.  Sad, but true.  Sorry to be harsh, but it's how it looks from over here.

You mentioned wishing there was one herb that would be effective.  Lyme doesn't work that way, and about half the time, there are other diseases carried by the same ticks, and those need separate diagnosis and treatment.  Different tests, different meds.  No one-shot wonders.  No short cuts.

You can go to ILADS [dot] org and read Dr Burrascano's treatment guidelines, a rambling mass of stuff that has grown over time as knowledge about Lyme+ has increased.  It will give you a sense of the complexity of the issue, and help you chart out things as you go forward, if you're up for it.  

Lyme is still a mystery in many ways, both its nature and its treatment, and it's complicated by the confusion in the medical community.  ILADS is most on track, and unfortunately infectious disease (ID) docs and rheumatologists are often the most close-minded.  So don't struggle trying to find the one true answer, diagnosis and treatment.  There ain't one.

Sorry to be a downer, but better to deal with the truth than wander around thinking you just haven't found the one-sentence answer and the two-week cure.  

Deep breath.  We've all been where you are, in one way or another, and you sound like your spirit is strong -- so hang on, and plow ahead.  Don't give the bugz the satisfaction of seeing you give up.  Hoorah!

[mojogal]

Why don't you go to social security and apply for disability?. I got mine very quickly and then they give you Medicare which is better than Medicaid.

[Ephedra]

I sort of realized all of this just by searching around. Normally I'd just jump gun at my own treatment regimen.  

There is absolutely no one in my family that is going to lend out any money for any reason. I wouldn't even dare to ask! I don't have friends either! Everybody that I have ever met is out for themselves. And I can only be nice to people for so long before I turn my back to them, including family. But it's okay, less drama and less people to explain myself to. I can't imagine a doctor accepting payments nowadays either but I could be wrong. Medicaid is accepted by most doctors, just not LL ones apparently. I'll have to call around some more. Maybe a neurologist. Have any experience in that area?

Thanks!

[Ephedra]

mojogal, I've been on disability for years. I just didn't really get the chance to pay enough into it through working, so it isn't very much. I always figured medicaid is better because it doesn't cost anything and it has a wider  coverage area including dental. They were going to put me on medicare and take the money outta my little check, but I was quick to deny it. It just didn't sound right! It sounded like an expensive mess!

Thanks!

[mojogal]

Oh, I see. You are right, Medicare doesn't pay dental and the money comes out of my check. In the world of LLMD some, do take Medicare not Medicaid.
Maybe somehow you can find a regular doctor to give you treatment, long term antibiotics?

[Ricobord]

I am so sorry about your predicament! It is your circumstances that anger me the most about the powers-that-be that deny so much about Lyme and leave people untreated and disabled.

There are two herbals that in combination have shown effectiveness against Lyme.  They are Samento and Banderol.  Samento is a name brand that is rather expensive. It is a form of Cat's Claw extract.  I read an article about someone who examined both regular Cat's Claw and Samento and concluded that you just need more of the regular Cat's Claw to equal the effectiveness of the Samento.  I bought a cheaper brand of Cat's Claw, followed the label, and it did help.  It's the first herbal medicine I ever took where I noticed a minor herxheimer reaction.  That's how I knew it was helping. These herbs won't cure a long term infection, but they can help you feel better and more functional.


If you're looking for a test result to help you get treatment, you could try Lyme TAP.  They provide assistance for Lyme tests to people who genuinely need help.  You would certainly qualify for that.  A Western Blot test at IGeneX is your best hope.  They do a more advanced Western Blot than other labs, and it's the most likely test to show Lyme antibodies, even if it isn't "officially" positive.

It's possible you haven't heard back from your doc yet because the ELISA was positive, in which case they should be running the Western Blot. The WB usually takes between 10 days to 2 weeks to run.  Where I live, I can call the lab directly and ask if testing is complete.  They will mail me the results if they have already been delivered to the doctor, or I can pick up a copy at the lab. Sometimes that's easier for me than waiting for the doctor's office.  Of course it's possible he only ordered the ELISA, and not the two-tier protocol, in which case, the ELISA results should have been done in about 3 days.

[Ephedra]

I seen how some LLMD's as well as IGeneX bill medicare but not medicaid. I didn't really understand why that is but I'm sure there is a reason. Medicare is actually the only insurance IGeneX will bill. Otherwise they expect the entire amount upfront. I did actually check with IGeneX and Lyme TAP. And as you could imagine, IGeneX testing is rather expensive. Lyme TAP can pay up to 75% of the testing if approved and I'm certainly under their income guidelines. Applying for prepayment is just a much longer process than applying for reimbursement, which is outta my range. I wonder if IGenex can bill the doctors office, which then bills medicaid for the cost. It'd be much quicker. I have no idea how all that billing works but I have the forms and it looks like it may be an option. IDK. Anyway I know he would want the ELISA results back first.

Thanks Ricobord! I have seen cats claw mentioned on various forums, I'll have to try that. It's interesting you mention the ELISA being done in 3 days. It's actually been 10 days! I called the office yesterday and the results weren't back yet. I was told that the're lab probably had to send it to another lab. I just figured they're lab didn't do that type of testing. I'm expecting it to come back negative, as everything always does. He does want to talk to me "in person" about my ct scan though. That sounds interesting! I look awful, don't feel good, and I have an awful pain along my jugular vein region that kept me up all night. It kinda came out of nowhere. All around the back of my ear all the way down to my shoulder and up the side of my neck into my jaw and teeth. I'm unsure of the source. I have a wisdom tooth I need to have surgically removed as well as an infection in my teeth so maybe that's the source.

Mojogal just to compare notes can I ask what effect of Lyme and co-infections left you disabled? I'm still struggling to figure out how long I've been infected and where it actually began.

I think it'd be tough to find a regular physician around where I live that would be open minded to long term antibiotics. I'll just have to tell them. Just like I have to tell them my suspicions and what test to order. I hate having to do that but if I want it done right I'll just have to.

Thanks everyone :)

[mojogal]

At the time I went on disability I was unable to walk very well, had muscle strength issues, vision issues was full of anxiety and horribly fatigued.
They back dated my disability several years from the time I stopped working so that was a nice surprise to get all that back pay from disability. At that time I hadn't seen an LLMD so my regular doctors said I had chronic fatigue mixed with these neuro problems.

[Ephedra]

Oh, I see!  

So was it slowly progressive for any of you? Or was it a somewhat rapid progression?

Beginning with anxiety and fatigue, I was declining at an extremely slow rate that I didn't even notice at the time. I was also suffering from painful adult onset facial acne, which could have caused the anxiety to begin with. IDK if adult acne could be related to Lyme. If not, then it's possible that the Lyme came later than originally thought but the fatigue was a very slow progression. It wasn't till recently that I began having issues with my balance, muscle strength, vision, and bone and joint issues, brain, and such.

Thanks!  

[mojogal]

I was bit over 20 years ago so mine was a very slow progression until I went through a very stressful time in my life 2 years ago and then it all came on very fast.

[Ephedra]

Just an update: I just got back from the doc. I have no idea why he wanted to talk to me "in person" about my ct scan, they were just calcified cyst. As for all of my other issues, I'm delusional! Yes!! I'm so relived I don't have Lyme after all, because the ELISA was normal as I expected.

Well, that was completely unnecessary stress!! Now IDK if I should spend every last dime and strength I have fighting? Or just relax with my friend Addy, get some cats claw, and let things go?  

Thanks everyone for always being so helpful :)

[mojogal]

Unfortunately the negative test result doesn't mean much. Most of us got negative results until we found an LLMD who did our tests through igeneX labs where many of us then got positive results.

I wouldn't sit back and do nothing because it gets much worse the longer you wait.

Keep fighting!

[Ephedra]

Okay <3 I think I will then!

It's so incredibly tough in every way as a single parent drawing absolutely no child support and no personal or financial support whatsoever.

[Ricobord]

A negative ELISA doesn't mean much.  It is notorious for missing late stage Lyme cases. I don't even think they ever tested it's reliability on late stage cases.  Some of the Lyme Disease committee members who voted to require it as a screening test hold patents on the ELISA and make money from its usage. That's one reason the Connecticut Attorney General began an anti-trust investigation into the IDSA back around '06.

A Western Blot at IGeneX is your best bet for finding signs of Lyme.  In my case, the result convinced my regular doctor that I did indeed have Lyme, even though my earlier screening test was negative. It sounds like you've done your homework.  Good for you!  Keep digging until you find a way that works for you.

If you're going to take Cat's claw, I encourage you to take Banderol, too. Two medications is usually more effective than just one.  Lyme is a slippery and wily little bacteria that adapts or hides or tries to escape from hostile environments. It doesn't give up easily.

[Ephedra]

Thanks!

How did you get your regular doctor to test through IGeneX? The doctor I went to completely believes in initial negative test results even though I told him it was extremely inaccurate.. I have the material for the IGenex test. I just don't know where to go with it. The cost would certainly be an issue too.

I'm thinking about ordering my own CD57. I thought maybe it might give me a bit of a lead without making myself seem even more delusional by more negative test results. The only reason I went to the doctor in the first place is because my symptoms fit a number of other diagnoses such as Hashimotos and Myalgic Encephalomyelitis. So I'm also considering a Hashimotos panel to rule that out, but IDK all this testing isn't cheap. Especially when insurance would pay for it through a doctor. But when I requested for specific testing at this particular doctor, he wouldn't even consider it. I really didn't think it would be a big deal but I guess it is.  

Anyone have any experience with the CD57? The problem is, I'm sure it would probably be low with Hashimotos AND Myalgic Encephalomyelitis, in addition to Lyme and a wide range of other ailments too.

[Ricobord]

Have you considered finding a new family practitioner?  Sometimes a new doctor is willing to order some tests for a new patient.  You could tell the new doc that your last doctor didn't have any answers for you, and you'd like another opinion, a fresh look.  

In many states, insurance companies (and this is probably true for Medicare/Medicaid, too) are required to cover tests and treatment that the doctor believes is necessary.  Many doctors don't want the scrutiny that can come with ordering tests they can't honestly say they thought were necessary.  (Never mind that they'll order a whole bunch of tests for you when they don't know what's wrong. They just won't order a Lyme test when they aren't convinced you have it. It's part of the ridiculous bias against Lyme Disease courtesy of the IDSA and the CDC.  The CDC actually says on its website that doctors should not order a Western Blot unless the ELISA is positive.)

My doctor signed my IGeneX order form when I went in to see her in terrible pain.  She was shocked at how bad I looked and was very concerned. I gave her the brief story of my sojourn through the pulmonologist, allergist, ENT, and neurologist while I deteriorated quickly.  I told her none of them had answers for me and I was sure I had Lyme Disease, even though I tested negative on a screening test.  I handed her the form and said I wanted to get tested at a specialty lab and I didn't feel the need to get insurance approval because I didn't have time. I was desperate.  

She hesitated saying she thought my insurance should pay for it.  I said I didn't care anymore and that perhaps they'd reimburse me for some of it later.  (They did, about 2/3 of it.)  She signed it right then, I think in part because she didn't have to justify it to my insurance company, but mostly because I was such a mess.  I had a history with her going back more than 10 years. She knew I was desperately ill.

I have not done a CD57.  While most long term Lyme patients will show low on it, most doctors have never heard of it and it won't mean anything to them.  The CDC does not even accept that Lyme suppresses it. If you want proof of Lyme, an IGeneX western blot is probably your best bet.

[Ephedra]

Thanks for being so helpful!!

So if I've took antibiotics off and on for the last five years, do you suppose it could suppress the results? Even if I'm taking antibiotics at the time of the draw?

The physicians where I live are completely clueless.