When money is the problem and no one gets it

Hi All, I had a very uncomfortable dinner last night and I thought sharing might help. My husband and I were graciously invited to dinner with relatives, one of whom is recovering from babesia. I remember when she started getting ill, I had already been struggling for 2 years at that point. But as I was getting nowhere with doctors, she had the money to see specialist not covered by insurance. She comes from a wealthy family and has never had to work. She is a wonderful person but I find that as I have gotten worse and she has only improved that it is very hard to spend time with her.

Much like many of us once you are introduced to lyme you started thinking everyone has it. And she did suspect I did. But at the time, in my ignorance, I didn't think or maybe I didn't want to believe, that lyme could take away your ability to walk or talk or simply use your body. So I kept paying insurance and seeing neurologist after endocrinologist after rheumatologist and I've gotten nowhere. It's been a year since I have been able to work, and i wasn't expecting that. And now we have no more savings, our credit is to the max, and so we are living paycheck to paycheck. Of course this didn't happen overnight, it happened after years of undiagnosed illness that slowly took away my ability to run my own business and make a living.

And so at dinner my health came up. It began on a very uncomfortable note. I hobbled in with my husband's help. None of them had seen me since I declined this much. My relative kept asking about symptoms, even though none of them were things she could relate to, she never had any neurological symptoms. The feeling I got was that this was somehow my fault. And at one point she said that if I don't deal with these symptoms soon they become permanent. I couldn't help but look away from her as she said it. I've known this and I have been trying to get help and I have been as proactive in my life as much as I can. it is my life, all day, all night. I'm very aware of the dangers and I'm terrified that I will decline more before I have figured out how to pay for treatment.

Even though the conversation would shift for a moment it always came back. They were recommending a doctor in the area that does not take insurance or treat lyme and yet of course it is worth it because its your health. After repeated attempts for an explanation for why I had not already made an appointment to this doctor that I was now being offered a ride to, I told them how much the consultation was, $260. "$260! your health is worth that. I pay $400 for a phone conversation with my doctor", was the response. Finally my husband piped in, "it's hard when you are living paycheck to paycheck." An awkward silence paused the intense anxiety I was now feeling. Is this how talking to other lyme literate people should feel like? I guess she just doesn't understand the financial side of this. To me that has been my biggest fear. The elephant in the room isn't just lyme but also the financial burden laid in its wake for people that may not be able to fully recover enough to work it off. I can't imagine if we had kids and so many do with Lyme.

The mother of this relative kept telling me I have to believe I will be healthy again, and do I suffer from depression? All I could think was no actually I don't, and of course I haven't given up on my body. I just have so little energy that it takes me forever to do anything, which of course looks like depression to someone who has not experienced extreme fatigue and weakness. All my cooking now is done in steps. I can't continuously stand and cook for more then 10 minutes at most. I spend my days meditating, doing very gentle yoga, detoxing, researching and reading everything I can on lyme and co-infections, and then of course I'm preparing healthy foods on a very fixed income. I mean I have done the whole intro GAPS diet and all. To me that takes everything out of me to keep up and I am not even in active treatment. But to them I look like I've given up because I am still sick.

The other component I feel when I see this relative is that she has full support from her mother. And maybe that is the worse of the two feelings. My family treats my illness like it is psychosomatic because I am still "undiagnosed" by real doctors. When we could no longer afford to visit nor was I well enough to travel without becoming ill, my family took it as a personal assault. I am now the one breaking up the family in their eyes. None have offered to visit or help, nor do they want to hear anything about my health.

So when I see this relative now I see only the differences between us: money and support. I've been looking into medical loans today, as my husband and I figure that is going to be the fastest way to get me into treatment. And all this makes me feel like all the things I expressed above. But in reality I could use with some advice. So if you have managed to read all the way through this maybe you also have experience that may be helpful. If not just a similar painfully awkward situation will fill me with a good laugh at this point. That is the one thing that seems to connect all Lyme patients, horrible things are said to you all the time and you have to choose to keep your energy and let it slide away, and or laugh.

Thanks Girlie, even though my skin is thinner then it has ever been, emotionally it's beginning to feel like leather. I haven't started a protocol yet, though I do take herbal supplements and other medications for nerve pain and neuropathy. I'm a little cautious right now just because this all began with really bad inflammation throughout my GI tract, and so I've wanted to wait until I see a LLMD to start a protocol just because I am so fragile at this point. Do you have any good links for herbal protocols? I'll start investigating regardless but links are always helpful.

Thanks again Girlie! The hug was needed :)

Sedna,

Hugs to you - sending prayers too. I'm sorry you had to endure that dinner. You probably lost your appetite. I do think it's easier to heal if you are wealthy. I think having people watch your kids, clean your house and make food for you would ease some stress. And of course go to doctors and alternative treatments. We are all in different places and stages and every lyme case is unique. Your relative may have had a much lighter bacteria load to begin with. Try not to compare. Also, the way she treats you and/or the insensitive things she says say a lot more about her than they do about you. I call them smile and nod people. Don't engage - just smile and nod to whatever they say. Both my in-laws had lyme, took six weeks of antibiotics and are completely fine - even drink a bottle or two of wine every night and have more of a social life than I do. They think I am exaggerating this and that I should be fine if I took the medicine. Except they aren't fine. My father-in-law can barely walk, he has a prolapse valve issue, my mother-in-law has COPD from chronic cough and is having hip replacement. All their ailments showed up post lyme but they don't think they are connected. Friends also act like I am exaggerating this when I can't make plans or do much. Now I just act really peppy like I'm fine and say I'm busy or I have a conflict. I don't explain that I'm healing. I would give a lot of thought to trying an herbal protocol. It's proven effective, doesn't cost a lot and it will kill the bugs. Many on here and have healed with herbs. Keep us posted and don't let one dinner set you back. I can tell you are an appreciative and grateful person by the way you began your post with 'being graciously invited." Hang in there. You can do this and we're here for you!

trader758 said...

This disease really bites doesnt it?

Oh boy...does it bite!

Sedna and Trader,

If you tell me what book you want and an herb or two that you would like to try I would be happy to send them to you. My private email is listed if you click on my name and send me your address and I'll send you a care package. We are not super wealthy but I am fortunate enough to be comfortable. I grew up very poor and we couldn't go to doctors or dentists. I worked super hard and my goal was to 'grow up and be able to go to a doctor and go on a vacation." My simple, childhood goals have been fulfilled and I never take being able to go to a doctor for granted. Would like to help pay it forward. And we all compare. Why I am very comfortable I think "Wow, if I could go to healers, acupuncturists, massage therapists and have a cook like my friend, I would heal faster." There is always someone with more and someone with less.

Hi Sedna,

From the Forum start page, there are some links for prescription assistance
www.pparx.org/
www.freemedicineprogram.org/
www.needymeds.org/

Also, I'd go as far as writing some LLMD's a nice letter and see if the will take you on, on a sliding scale. Some doctors do, but don't publish that. No shame in asking, this is a very difficult disease and regular doc only treat it CDC ways..

Last, but not least read as much as you can here, and see what you can start with in terms of eating lifestyle. just adjusting your diet to disfavor feeding lyme, and increasing DETOX lays down the ground work for ANY therapy for Lyme.

Banderol/Samento are two basic herbs that do help. the entire Buhner protocol gets expensive.

I hope this helps and also encourages you. I know how frustrating this is, I'm still trying to get to an LLMD, and had to start herb by myself. Don't give up or feel guilty in any way.

Some people are born with a silver spoon in their mouth. And then marry into more $. And dont know the odds of this that happened to them. Some (not all) may never get it. Oh well.

Money might not buy happiness, but it certainly can make things easier if one does it right..

Yet for some reason, most who win a lottery don't know "how to do it right".

Post Edited (astroman) : 9/15/2016 9:34:25 PM (GMT-6)

$260 for the doctor's consultation... I wish I was there mine was $525... besides I have to drive 6 hours to go and 6 hours to come back.

Please take the time to go through these links. There will be some duplicate posts in them, but each of them have something valuable:

Care Credit
www.carecredit.com/

www.carecredit.com/howcarecreditworks/


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www.goodrx.com/

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www.lduc.org/lyme-disease-resources

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/prescriptionhope.com/

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/www.rxhope.com/about.aspx

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www.pparx.org

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www.needymeds.org

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www.healingwell.com/community/default.aspx?f=30&m=2958427&p=1

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www.gooddaysfromcdf.org/for-patients/patient-assistance/

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lymedisease.org/news/touchedbylyme/lyme-financial-destruction.html

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lymeunderground.com/survival-tactics-getting-by-on-a-limited-budget/

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lyme.kaiserpapers.org/financial-assistance.html

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lymedisease.org/news/touchedbylyme/needy-meds.html

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www.lduc.org/lyme-disease-resources

Yes ...in combo with abx i think they cant handle it ..my microscope says rhey are our of blood stream and running for cover ...livedo better brain fog .stamina ..and twitching improved ..aint for the faint but its fun ...here is a sop or a kete that is dying as a result of venom ..https://youtu.be/NnkRZQvokMY

Hi Sedna,

I'm so sorry you went through that and are struggling financially. I struggled also.

May I suggest to stay away from this relative because if she was so wonderful she would have offered to pay for your treatment. I learned I needed to stay away from negative and manipulative people. I have an estranged sister who married into a very wealthy family and when she used to come visit me she enjoyed putting me down in a manipulative way, was a control freak, and the list goes on. I finally had enough of her and told her never to contact me again. By the way I was already healed from lyme when we were talking. All my sister had was money and she hid behind it. My sister is one of the most miserable people I ever met.

That said, I didn't have the money for a LLMD (at first I saw a lyme literate ID doctor) but had to stop because the Doxy made me feel really sick. Basically this was a blessing in disguise. I guess someone was looking over me when I joined a lyme forum (not this one) and members talked about Dr. Jernigan and his "Healing at Home" protocol from his book which I followed and healed from.

That protocol costs me $100.00 a month for 2 botanicals (following his protocol) and other months $150.00 when I needed to take a 3rd botanical. All I am saying is that you have options.

Big hugs to you,
Denise