I am at the end of what I can endure. And I’ve been crying that cry for so many years it isn’t funny.
I have been fighting TBD’s all my life without knowing that was that I had. I have been fighting it with all my might since diagnosis in Jan. ’05. But with one
constant obstacle after another interrupting treatment repeatedly, plus tons of permanent damage, I am only slightly better, and in numerous ways much worse.
But one of the worst things is that I am constantly having to fight for what I need, and what I pay for, with the insurance company, the doctor’s offices, the two infusion companies, the labs, and on and on.
The worst of all is the insurance company. They deny just about everything, including on appeal, and including many, many of
my rx’s. They’re out and out crooks. Oxford makes it impossible for me to get what they should be covering.
I have no choice about my insurance company, sadly. I have tried for years to get help from patient advocacy groups to no avail (they’re swamped). I’ve tried to hire someone, also to no
avail. I can’t get help from my husband’s HR dept either (they’re useless, plus we don’t want to let it be known how much I need and use the insurance).
I’ve been complaining to my state AG’s office, and they are helpful sometimes. But it takes so much time to do the endless fighting for what I pay for with Oxford, including reprocessing,
endless phone call, and appeals, and then to spend the time all over again to complain and document everything with the state AG’s office for every last thing.
There is just no way I can get well like this.
It’s bad enough that I am up almost all night every night in so much pain that I can’t bear it, that I almost never can get out of
the house, that I have had no life for so many years now, and that it is killing my husband, as well as myself.
Something has to give, and so far it is myself and my husband that are giving. I am feeling like ending it all for the umpteenth time, because of the endless pain, struggle, and suffering.
And to boot, I can’t even tolerate any antidepressants, or other psych meds, in spite of trying mightily for 13 years (I get far worse symptoms from any that I’ve tried over and over, even starting at teensy doses).
Yes, I do all the nutritional and natural remedies, which help, but aren’t enough. Help!
Posted by BoxerMom (Member # 25251) on :
Oh Rumi! I ache for you!
Lyme is an all-around awful experience, no matter how you slice it. And some have it much worse than others.
I can't imagine the insurance fight on top of everything else. You must both feel so frustrated and powerless. Yes, they are control freaks and thieves. Anything to deny a claim. It is beyond inhumane.
I have also been in the start-and-stop category for the last 2-3 years due to recurring C.diff and other abx side effects. It is driving me crazy, too.
My husband and I have been talking Rife, but haven't had the money to plunk down. Now we are looking into building one, buying a few parts with each paycheck.
I don't know if that's an option for you. But it would get insurance and infusion nonsense out of the picture. And maybe get you on a path of steady, consistent progress.
Just thinking out loud. Mostly want to send you big cyber hugs and help you find the strength to keep going.
Much love, BoxerMom
Posted by Tincup (Member # 5829) on :
I am so sorry to hear of your situation. More than most I KNOW the horrible treatment we get from insurance companies and so deeply feel your pain. BUT...
You can end it all right here and now if you don't get a date with Mel Gibson. You can be beyond frustrated if you buy a nice boat and it sinks before your first outing. And you can cry your heart out if someone steals all of your Halloween candy. BUT...
You CAN NOT give up fighting Lyme and the sucky, unreasonable, pig-headed, incompetent insurance companies.
I don't know your age, don't need to, but can you check with your local senior center (they may help if you are disabled but not a "senior")? They sometimes have folks there to help with the insurance paperwork and sometimes for free. And yes, I know- GEEZE- another place to make copies for and to explain this all to, but don't be worried about it right now.
The first thing you need to do is shut down ALL paper work efforts and go somewhere. Get your hair cut, take a ride to a pretty place, or go across town to an ice cream shop and pig out on a banana split.
You may need to take a week or more off from the insurance nightmare, even though your thoughts may automatically revert back to how horribly you've been treated during this time. When the insurance word does pop in your thoughts, say, out loud in a nasty tone...
STOP!
I know this may sound goofy, but it can help.
Another thought or two...
Are you able to get Medicare?
Can you do some fancy foot work and just buy your RX's at a store (Wal-Mart & Target) that have a $4 prescription plan?
If none of the above is a solution, feel free to contact me by email. I'll do what I can to assist you.
May the morning light bring you peace and comfort.
Posted by Rumigirl (Member # 15091) on :
Thank you, Boxermom and TC!
I did rife intensively for about 3 1/2 years (the 3 top machines), along with herbs, ozone, etc. But although I herxed my brains out and did tons of detox, I didn't get better, and in fact got a horribly worse.
I now have 80-100 lesions on my brain with a severe plaque load. "Severe disease burden," on the recent MRI report. With near constant migraines, in spite of Botox, Neurontin, magnesium, CoQ10, and all the rest.
I want to do Medicare, but it doesn't cover two of my most important treatments: IVIG and Botox for migraine prevention
(sometimes it covers that, but it is very dicey. It definitely isn't covered at the office I go to). Lots of other things that are essential they don't cover either (not to mention my drs).
I will look at it further though. I need to be married to a zillionaire!
And the rx's that they won't fill, of course, are the expensive ones that aren't covered by $4 plans, etc. Sigh.
I will check into Center to help though. Have tried before, but didn't go all the way with it.
Thank you, guys! Um, is a fairy godmother on the way??
Posted by GretaM (Member # 40917) on :
Rumigirl-I am so sorry that you're stuck on the hamster wheel
Botox for migraines is terribly expensive. The $300 every month hit me too hard and I found better results with acupuncture every month, at $70 a pop instead.
Acupuncture also helped me with my leg twitching-stopped some bad twitching instantly.
Not sure if you have a good TCM in your neck of the woods, but honestly, if you can find a good one, it will help muscle-based symptoms.
I am sorry the insurance company has you by the, um, neck.
Please don't give up. Your posts are so helpful and it is always nice to read them.
I had a hamster once that wore-out his wheel.
Just sayin'... Please don't give up.
Greta
Posted by Catgirl (Member # 31149) on :
I am so sorry for your struggle, pain and issues. It's truly heart breaking what we go through sometimes. It is too much for many of us to battle the insurance companies. The negative battle takes it's toll. I've stopped battling and just do what I can.
What you've been doing hasn't been working for you. Maybe it's time to try something different for treatment. Sorry, I can't remember if I've suggested this to you before (lyme brain), but have you considered parasites or proto? IMO, tons of people have both and just don't know it.
I had no problems with eating fats or meat so of course, I never thought I had proto (or so I thought). I ate SO much fat (lol)! Coconut oil by the tablespoons. Avocados, meat, cheese, salty butter sandwiches, nuts too. I thought all was great.
I thought my babs symptoms were babs, and my bart symptoms were bart, and my lyme symptoms were lyme. Little did I know that some of the symptoms that are normally considered to be lyme, bart and babs actually turned out to be proto.
Because of this, I never thought to mention them to my doc. Most lyme patients wouldn't have a clue either. It takes time and backsliding in order to figure it out. The biofilm that proto produces (100x more than normal) protects all the bugs. All of them. So backsliding continues.
I've had proto for years. It has only now progressed to a point where I have to really focus on limiting fats and arginine. I don't really know what made it progress to this point. Maybe it was lyme or parasites (just speculating). Had I not been aware of proto or the symptoms, I would have thought it was just babs, bart or lyme. I don't have to eat as low as 15 grams of fat to feel good though. It's different for each of us--all about balance.
And parasites, everyone has them, IMO. They are what make us feel bad. It is so important to treat for them. If you have babs though, they don't always come out. My doc was surprised to discover this (they don't want to let go). It takes a lot of work to get them out.
Hang in there Rumigirl.
Posted by Pocono Lyme (Member # 5939) on :
Not being able to handle even small doses of meds. is a symptom of adrenal fatigue.
I started heavy duty treatment in March 05 and just stopped antibiotics May 2012 as they didn't seem to be helping plus my body didn't want them.
I took a step back and started to re-evaluate my symptoms etc. after a break. That's when I believed there may be some collateral damage.
I had muscle pain, hair loss, extreme fatigue, couldn't handle even the slightest bit of stress, waking around 2 am daily, and so much more.
After going on Hydrocortisone and Armour Thyroid, much of my pain went away. Getting those two things treated have made a huge impact in my road to recovery though not an overnight fix.
It's definitely worth finding a bio-identical hormone replacement doctor. Some symptoms I thought were Lyme and company weren't.
I now sleep MUCH better, am able to handle more stress, can think more clearly, lost excess weight, stiffness almost totally gone, much less muscle pain,...
How do you fill out and file insurance paperwork?!! When my brain was at its worst, I could barely form a thought, let alone fill out a form!
You are a genius in disguise.
And your insurance company is killing you.
This will not do.
Can you file a lawsuit? Go to the press?
With your history and labs, you obviously require IV. Is it the Lyme word that's the problem?
Healthcare reform is hugely in the news now. And Lyme is making headway. Can you get on your local news? Or in the paper to start?
Does it change anything to claim immunodeficiency with multiple infections? I am eyeballing that diagnosis more and more, as I seem to have every single co- and opportunistic infection possible.
Jus' thinkin' out loud again.
Posted by Rumigirl (Member # 15091) on :
Thank you, everyone.
I had one coup today---after complaining to the state AG's office about Oxford/Optum Rx's denying an essential med and giving me the complete run-around for 12 days, they finally authorized it. The amount of time this has taken over 12 days was unreal though---for one med alone.
On the other side: a treatment for pain that I need that was denied, and then they were refusing to let my doctor appeal it. So I complained to the state AG's office a couple of weeks ago.
After much more time on my part to shepherd this through, it was denied on appeal today with no reason given. I notified the AG's. So now on to the doctor's applying for authorization of a watered down version. Sigh.
In answer to some of your suggestions: I have dealt with parasites a lot for decades, and surely need to some more. Right now I'm on Flagyl, which will help with some of them.
Proto? Have never been tested, but likely have it. Don't know if the new doc I'm seeing next week knows anything about it. We'll see. No way can I do a low fat diet, however. I'm a very fast metabolizer, who requires a lot of good fat, or I starve!
I have been dealing with adrenal fatigue and thyroid for a very long time and do take Cortef and Nature-throid, along with supplements for adrenals---and Florinef.
I don't have problems with all meds, but definitely do with psych meds---and some others. It appears to be genetic, as my mother had it also. Plus, I've been tested for genetic detox glitches that affect psych med clearance problems (and other meds, too). I do lots of detox.
I definitely do still have Babs and need more sustained, comprehensive tx of that.
A law suit? I've been thinking about that a lot and would like to in the ideal. But how to find the right lawyer, who would take it on contingency? Plus, I need the insurance co for what they do cover. So, not sure?? What I've been going through is unsustainable, however.
It's not just about Lyme, they just don't want to pay for anything if they can get away with it!! But the L word doesn't help.
Sickofthepain, I'm sorry to hear about your problems, too. It's a mess. We need all around help on every level and don't have it!
IV? Yes, absolutely I need it, have had it, am doing it now, and need to continue. It does help a lot. I just need more sustained and comprehensive treatment without constantly losing LLMD's, having my #s go low, etc., etc., necessitating stopping treatment over and over again.
The number of things that I, and many/most of us need to address is ridiculous, esp with all the obstacles.
Thank you all for your support and ideas. I'm not writing any of it off, even if it sounds as if I am. It sure is overwhelming though (for all of us).
I have the Croix de Guerre sitting in my husband's desk drawer. It was my father's, awarded from service in WW II. Too bad it doesn't do me any good now!
Posted by mlg (Member # 35383) on :
I would treat proto/babesia. Heparin. Crypto and artemsinin pulsed. You can try to get meds through Mexico/Canada.
Also, Albenza, Alinia, Ivermectin with base of zithromax.
Colonics, enemas, infrared sauna.
Posted by PatriotM (Member # 38493) on :
Rumigirl,
I had nearly constant severe headaches for over a year (I also have multiple brain lesions). I saw a neurologist who specializes in headache pain. I now take Topiramate to help prevent the headaches and Imitrex when I get a severe headache. Along with the Cowden Protocol, that had my headaches down to about 5 to 7 days a month (until my recent kidney stone surgery fiasco, which is an entirely different story).
I don't know if you've tried Topiramate and Imitrex, but it helped me.
Posted by dbpei (Member # 33574) on :
So sorry for what you are going through, rumigirl. In reference to Greta's suggestion for acupuncture, I go to an acupuncture clinic and pay only $20 per visit. They accept $15 per visit if that is all you feel you can pay. They do not make you fill out financial information.
It is a very supportive environment and many people are being treated at the same time in a gentle, healing atmosphere. There are community acupuncture clinics across the nation. I hope there is one not too far from you.
Acupncture has really helped me. I feel like it can calm down the nervous system, allowing me to get better sleep, to help with healing, and to calm my tinnitus. (It opens up the pathways so that herbs/meds you are on can work better)
If you don't cut the fat/argenine the pain continues (and co infections flourish). That is what is so mystifying about protomyxzoa. People think it's lyme.
I am sure you are tiny like I am. I lost 5 lbs eating proto diet. I just cut my fat/arginine (animal products). I don't eat anywhere near 15 grams of fat though. I probably eat 35-40. We are all different, you just find whatever works for you. But you have to up your grains, and for some protein powder helps. If you could feel better, wouldn't this be worth it? It is for me.
Acupuncture got me through when I went undiagnosed. It calmed my body down some how. It's so beneficial. Also, ondamed helps me even more than acupuncture.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by Catgirl: I agree with mlg and dbpei.
If you don't cut the fat/argenine the pain continues (and co infections flourish). That is what is so mystifying about protomyxzoa. People think it's lyme.
I am sure you are tiny like I am. I lost 5 lbs eating proto diet. I just cut my fat/arginine (animal products). I don't eat anywhere near 15 grams of fat though. I probably eat 35-40. We are all different, you just find whatever works for you. But you have to up your grains, and for some protein powder helps. If you could feel better, wouldn't this be worth it? It is for me.
Acupuncture got me through when I went undiagnosed. It calmed my body down some how. It's so beneficial. Also, ondamed helps me even more than acupuncture.
I should probably look this up, but what lab does the test for Protomyxzoa? And what is the treatment? Ivermectin is part of it, if I remember correctly. Is there a link with all the info?
I doubt that the new LLMD I am seeing on Wed. knows about it, but we'll see. Also, I don't think that I can get accurate test results for any pathogens, as I'm on IVIG, and when I last had a battery of tests while on it, everything that always tested positive for years tested negative.
It's not feasible for me to go off it. It also has a very long 1/2 life (like 35-45 days 1/2 life. But I could be treated without testing (if the doc knows and agrees, which is a big if).
Isn't Proto something that you can never get over??
I could never give up animal protein PLUS a lot of fat, I would really starve!!! I am really small anyway (not short, but quite thin).
During the years that I was a vegetarian, ages ago, I had to eat all the time, and ate tons of nut butter, yogurt, granola mixed together, trying not to starve myself. And eventually, I was literally on the floor, unable to function. Didn't work!!
Acupuncture never helped me with the migraines, even after trying many, excellent acupuncturists. Ondamed didn't help with migraines either---sadly. TBD treatment does help them though.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by PatriotM: Rumigirl,
I had nearly constant severe headaches for over a year (I also have multiple brain lesions). I saw a neurologist who specializes in headache pain. I now take Topiramate to help prevent the headaches and Imitrex when I get a severe headache. Along with the Cowden Protocol, that had my headaches down to about 5 to 7 days a month (until my recent kidney stone surgery fiasco, which is an entirely different story).
I don't know if you've tried Topiramate and Imitrex, but it helped me.
I did try Topamax (Dopamax---it makes you dopey!), but couldn't tolerate it. It gave me worse tinnitus, lost a LOT of hair, and made me really unable to think or speak (the Dopamax factor!).
I take higher dose Neurontin at night instead, which does help a lot, but not enough. I do go to a Migraine neurologist---have been going for about 13 years.
A number of things help, just not enough yet. And TBD treatment has helped greatly when I get enough of it in a consistent way, which has been a big problem.
I've just had way too many treatment interruptions for long periods of time (I lost 3 LLMD's with no warning in just over a year---one after the other---my WBC's and neutrophils go way too low, so I have to stop tx, LLMD's giving inadequate treatment, etc., etc.
Posted by BoxerMom (Member # 25251) on :
Rumi - I wasn't telling you you need IV. I know you're on it and all the obstacles you've encountered.
I was telling your insurance company. Your labs and presentation make such a clear case. For whatever good that does.
Are there any class actions against Oxford?
Someday an insurance company is going to be sued for wrongful death. It's about time.
Posted by Catgirl (Member # 31149) on :
So far, they haven't found a cure for proto. IMO, it's just like lyme (we knock it back to remission). Dr. F has found a way to knock proto back. It is well worth it. If your doc doesn't know about it, he can call Dr. F. I would test yourself with the diet. It's better than suffering on and on waiting for someone to diagnose it. It's a parasite. Parasites are easily missed.
Fry Labs tests for protomyxzoa. The test, like any test, is fallible though. The best way to tell if you have proto is to change your diet. I could tell within three days (felt better). For others though, it can take 2 months or so.
I had to completely change my diet. I never thought I could live without meat (especially with lyme and company) as the protein it provided made me feel better. This turned out to be a false belief of mine. Plus, I am very thin as well.
I gave up most of the meat. Now I only eat a little--enough to give me energy. There are always protein powders too, but I like a little meat, so I just eat more whole grains and veggies with it. What a difference the proto diet makes! It is worth it to feel better. It starves the bug.
I had to cut out most animal products (arginine), fats, oils. I only have a little cheese, a couple of soaked nuts (eliminates some of the fat), a spoon of yogurt, and a little meat. The more I have of any of these, the worse I feel though. It's all about balance.
You have to go cold turkey though to find your limit. You also have to up your whole grains, beans, greens, & veggies. You just eat a lot more of them. A lot more. You have to find a way to do what works for you. I eat a ton of grains now.
I see no way that I could do the diet though without doing me in. I've already done that before with truly disastrous results. I was already an experienced nutritionist, so it wasn't that I was doing it without attention to other protein sources, etc.
Many people simply do not have the metabolism to do without any or much animal protein or with low fat. I am definitely one
of them. Trust me, as a practitioner who has worked in the field for many decades, and who has lots of experience with my own body, I am in HORRIBLE shape if I eat that way.
Posted by mlg (Member # 35383) on :
I was just like u. I had hypoglycemia. I had to eat meat every 2 hours. The doctor told me the hypoglycemia was because of the infection. Things that got me over 1 curve: zithromax, Mepron, for 7 months alternating crypto and art. Added 1 month of Bacrtim. That got my hypoglycemia a litlls better. Curve 2: Attacked ant-parasitics such as zithromax with ivermecti+paragone with colonics. Did for 5 days. Did same thing with zithro+Albenza+paragone with colonics. Curve 3 get a good doctor that will Rx something to sleep. The longer I slep the better my hypoglyci was. Juicing first thing in AM, infrared session. Also helped.
Posted by Brussels (Member # 13480) on :
Me too, I need the fats, like the Eskimos!!! Our brain is made of fats, anyway, and fats can dissolve many toxins , and then flush them off.
Just see what Indians do with ghee butter (taking loads at once, to clean themselves!!!)
That is why many people with lyme crave for eggs.
I think that the type of diet depends on each person and the age.
Posted by Rumigirl (Member # 15091) on :
Yes, it in not so much that I have hypoglycemia, it is that I genetically have a metabolism that requires quite a bit of animal protein and fat---as do the majority of people with ancestors from
northern Europe, Scandinavia, Russia, all countries cold in the winter. Genetics don't change according to people's ideas. They change only over long, long periods of time (many, many generations).
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