HealingWell
Search Close Search
☰

I have a question.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/24/2019 4:59 AM (GMT 0)


Hello everyone,

I just found out that I have very VERY advanced Lyme disease.

My LLMD, (also functional medicine Dr)
Dropped me from treatment with antibiotics, due to the fact that I seized for about an hour on their table.

I was referred to another, more experienced LLMD. The prices are through the roof! Over $800 for the first appt! The bottom line is I can't work, so I can't afford them, or the treatment I need. If I could find a way to get treatment, it might kill me in the process.

I don't want to leave my family in a ton of debt.

Here's my question:

Is there anyone who has chosen to stop treatment, due to the fact that you don't want to leave your family in debt?

If there is, how did it go?
Posted 3/24/2019 7:27 AM (GMT 0)
SickKitty - I urge you NOT to stop treatment entirely.


If you can't afford a LLMD...then maybe you could do Buhner's herbs?

You say you don't want to leave your family in a ton of debt. Have you had a discussion about this? I would think they'd want you to do what it takes to get well. I know the feeling though. I feel guilt all the time.

It's really sad that we feel this way. If we had breast cancer...and we were not able to work...it would be different, right?
In fact, people would probably set up a GoFundMe account and raise money to help.

I am building quite the debt load....but I will just work at reducing it once I'm back to work. My life is worth nothing if I don't get well...or at least better to the point I can have a normal life...and work again.

I'm sorry you're facing this dilemma....
Posted 3/24/2019 9:23 AM (GMT 0)
Heck I'd love to find an llmd around me for $800. The only Llmd I've found even remotely close to me is around $2,000 just for the first visit.

But yeah if you can't afford visits then try herbal. Do whatever it takes to get better with what you have. Just don't give up.

😉

Post Edited (JayPoppa) : 3/24/2019 3:30:05 AM (GMT-6)

Posted 3/24/2019 2:37 PM (GMT 0)
Have you explored the herbal treatment route? Stephen Buhner has books and website that have a lot of great info. Many do quite well with herbals but it can take some research and also experimenting with various herbs to figure out what is effective for one's situation.

Quite a few people have to self-treat with herbs because the finances of seeing an llmd/llnd are too much. There are groups on facebook that one can join, it can be helpful to join those groups to get a little direction/support since it can be overwhelming to start from scratch on one's own. And of course this forum is also a good resource!
Posted 3/24/2019 4:22 PM (GMT 0)

JayPoppa said...
Heck I'd love to find an llmd around me for $800. The only Llmd I've found even remotely close to me is around $2,000 just for the first visit.

But yeah if you can't afford visits then try herbal. Do whatever it takes to get better with what you have. Just don't give up.

😉

$2000 for the first visit?

Dr J doesn’t even charge that.
Posted 3/24/2019 6:13 PM (GMT 0)
Sorry to hear what you are going through, SickKitty. Many of us have been there or are there now! There are ways to get better without LLMDs and other expensive specialists. Keep in mind also that many LLMDs do not advertise this speciality, so it can be helpful to see (or even just call) local holistic practitioners (more likely to have Lyme experience and talk about it freely) and ask them which MDs they recommend. I think it's a great idea to have a thread on this forum about the least expensive treatments that people have found helpful! Look into other types of practitioners who are covered by insurance, possibly a chiropractor or physical therapist who treats Lyme (call to ask about experience, as many don't advertise this area of expertise) or an integrative medicine physician who can help you work on Lyme-adjacent issues (gut, adrenals, etc.) while you navigate infection-specific treatments yourself with the help of your own research. There are other sorts of practitioners who treat Lyme (traditional or classical Chinese medicine, herbalists, homeopaths...) and other sorts of treatments (PEMF and Rife machine treatments, acupuncture, flower essences, ozone, infrared sauna, Dynamic Neural Retraining System...) and many books.... This forum would be a great place to ask for recommendations for books and websites as well. There are protocols out there that are very cheap and simple, like the Root Cause Protocol, and some people notice a difference just with yoga and a healthier diet. You have options. Truly.

Your family is likely to prefer you getting well over having less debt, but I definitely understand the desire not to feel like a burden or like you are limiting the lives of others. The thing is, all of our lives are worth something even if we're very ill, very limited, and disabled. There's a TON of ableism in the world, and although many of us have internalized ableism, I believe it is imperative that we fight against it. Your life matters, who you are matters, and your value does NOT lie in what you can do. A sick life can have beauty and meaning. Our lives don't stop or get put on pause when we get sick. We're still here! Chronic Lyme is monstrous garbage, no doubt, but we are more than that diagnosis.
Posted 3/24/2019 9:57 PM (GMT 0)
Everyone,

Thank you so much for your replies.

I was referred to DR. J.

The issue is, we are being kicked while we are down. seriously. My health is declining rapidly.
I know now more - co-infections, and chronic ones too.

Current diagnosis is:

Fully Dessimated, Late stage, neurological lyme disease.
Mycoplasma pneunmiae
chlaymidia pneunmiae
(Both are chronic) Mycoplasma read a score of 295 out of 300

hhv-6

B. Duncani
HGA
Bart.

Everyday I seem to be declining. memory, o2 sats, chest pains, bruised limbs, leaking veins, and so much more. I dont know if I will get better.

My S/o says I dont have a choice but to treat. (ive misscarried 4 times now) S/o knows this. last time anything grown up wise happened, i experienced a seizure that paralyzed my lungs. Obviously, I made it.

my heart doesnt stay steady, or my o2/bloodflow.

Im suffering from slow hypoxia, every.single.breath.hurts. possibly organ damage, and cns damage.

Im in week 9 of being bed-ridden.

Back story, I believe I have had this since birth. It took great pain and stress in my life for it to get this bad, Like really bad. People died.

anyways, I'm on a new path, and the last one was really dark.

I am in a dark place, but not a danger to myself or others. More of hopellessness and helplessness. Drs are talking about homecare.

this is my body screaming from the stress and pain that ive gone through. Honestly, I dont want any of my loved ones to see me like this. I am alone most of the time, stuck in a room, unable to breathe, or really do much.

I am doing what I cant to adjust, distractions, exc. Ive lost at least 4 hours today.

i know im not the only one.

Thank you everyone for replying!
Posted 3/26/2019 12:15 PM (GMT 0)

Girlie said...


$2000 for the first visit?

Dr J doesn’t even charge that.


Actually I was told it would cost around $2300 total for the first visit and around $350 every appointment after. And they dont take insurance. Which is why Ive been self treating for a year and made that post recently asking about where to buy antibiotics online (which got deleted). Sadly I don't travel and this is the only option in my area. Trust me if I could go to Dr. J or find someone cheaper I would. For the life of me I cannot find any other doctors to treat me. Heck if anyone knows any Llmd' s in Middle Tn then message me.

😉

Post Edited (JayPoppa) : 3/26/2019 7:10:14 AM (GMT-6)

Posted 3/26/2019 1:22 PM (GMT 0)
Did you get that quote from their office? I started there in 2017 and the first visit was much less than that. (And subsequent visits a tiny bit more.) If not, please call them directly for up-to-date info.

Do you live in the area? If so, there are local support groups that I'd like to invite you to.

Please don't give up. We can't always see a way out of this, but we have to take one step at a time.
Posted 3/26/2019 2:32 PM (GMT 0)

JayPoppa said...

Girlie said...


$2000 for the first visit?

Dr J doesn’t even charge that.


Actually I was told it would cost around $2300 total for the first visit and around $350 every appointment after. And they dont take insurance. Which is why Ive been self treating for a year and made that post recently asking about where to buy antibiotics online (which got deleted). Sadly I don't travel and this is the only option in my area. Trust me if I could go to Dr. J or find someone cheaper I would. For the life of me I cannot find any other doctors to treat me. Heck if anyone knows any Llmd' s in Middle Tn then message me.

😉

///////////////////////////////////////////

The initial visit is under $1000
are you talking about lab work that needs to be done as well?
And the antibiotics?
You can submit the receipts to your insurance company.
Posted 3/26/2019 3:13 PM (GMT 0)
I hear you that you want to find a LLMD who is less expensive than the ones you have found, and unfortunately I know nothing about TN resources, but I do know there are a lot of holistic healthcare practitioners in that area who address chronic infections and chronic fatigue syndrome, so I would call or email them and ask if they address Lyme. It's not uncommon for folks to treat these infections but not advertise it.

I hope that you keep reaching out here, even just to vent. I'm sorry for all the stress and trauma you alluded to in your backstory. You are not alone in that, and I do believe that our histories can wear down our bodies and predispose us to chronic illness. Please remember that people do recover from even very dire cases of these illnesses. We are here for you.
Posted 3/26/2019 9:01 PM (GMT 0)
Thank you everyone for your kind words.

I know I'm not alone. But I'm stuck in one room most of the day.

This morning, (before the sun was up), I was told that I was being selfish by asking for someone to bring me something from downstairs.

Because I can't breathe and I black out when I'm on my feet too long. Even talking is almost impossible now.

I went off. Not only am I selfish for wanting more sleep before the adrenaline kicked in, but I'm selfish cause I can't get downstairs very often. I find myself alone.

So, if I'm selfish for trying to rest, because I am at the end of my rope, and trying everything I can to push through all of the life-threatening herxs, allergies, exc, why would I want to reach remission? (Hypothetically speaking of course- I am in no danger to myself or others.)

I know today is a bad day. One way or another, it will end up in the past.

*Hugs*
Posted 3/27/2019 3:25 AM (GMT 0)

Girlie said...


The initial visit is under $1000
are you talking about lab work that needs to be done as well?
And the antibiotics?
You can submit the receipts to your insurance company.


Are you taking about the cost of Dr. J's initial visit? That's not bad. But like I said I can't travel and Dr. J is a no go unless he can do stuff over the phone / internet. The only doctor around me that I know of and can find charges $2300 the first visit. Labs and everything are included but I do not have insurance that will cover it. So yeah.
Posted 3/27/2019 4:44 AM (GMT 0)
Yes, Dr J’s visit.

But doesn’t include labs.

Dr J does do alternating phone appts with inpersin visits if you are too far to travel.

I just had my inperson appt and I travel back in one year.
I have a phone appt in 6 months.
I’ve been at the J clinic for a year now.
Before this they were 3-4 months apart.

I’m sorry you’re having such a rough time.
I hope you find a LL dr closer to treat you.
Posted 3/27/2019 7:19 AM (GMT 0)
I have been using light treatments for a number of years. Began with ultraviolet blood irradiation.

When I first looked into it, there was a clinic in Mexico which was charging $150 per treatment with a minimum of 15 treatments. I would also have had drive 130 miles one way.

So, ended up building my own machine. In other posts I describe the equipment and how to build it. Also books on the subject.

God Bless
Posted 3/27/2019 11:47 AM (GMT 0)
On top of lyme and coinfections, could it be possible that you also have mold toxicity?
This is just a guess, and might not be the case, but the culprit for health declining fast can be mold too, and it's very dangerous. Of course, it can be other things, but I just can't not mention this, as my own health was declinig from it so quickly I thought I was going to die. And reading about mold toxicity experiences, many times I stumbled upon the sentence "I knew I was dying."
Is there mold in your home? It could be hidden, in walls, crawl spaces, ventilation ducts, basement etc. Having lyme can make you susceptible to toxins from mold.
Posted 3/27/2019 3:18 PM (GMT 0)
Update:

I'm being forced to go to Dr j. Not that I really object. (Luckily, I already have thousands of thousands of dollars of labs already done)

My biggest worry is me passing, and leaving them with huge debt.

All of my life, I've been sick, and pushing through. But not This sick.

As of mold? I don't know. I'm currently living with roommates, at their place.

My mom passed away, every death I've experienced, I get sick. The closer the death, the worse the sickness. My decline could be attributed to the stress.

The thing is, I have to wait for the money to come in. Which could be a while. I don't know if my body can hang on that long. Then, it's a 2 month wait before I can see him, even placed on the, "urgent, call if cancelation" list.

As for mold, I've dealt with it most of my life. I have a small purifier in my room to help.

Other than that, I'm a guest in the house. I'm not sure what I could do to help try and fix a mold problem.

I am super sensitive to antibiotics now. I mean, I herx off of 10ml!

I started at 2.5mls, do to 5mls causing seizures.

I worked up to 10mls for a bit, but had to stop due to increasing seizures, O2 issues, circulation, heart, lung, toenails dying do to it. I also discovered that I now have a numb spot on the back of my left leg, just below my knee.

So, it's er for my symptoms, to try and get insurance to help me with supplimental O2, and a wheelchair. I no longer trust myself to drive.

I have been taken off of the antibiotics to try and help detox, and decrease these worrisome symptoms.

Thank you for all of your replies! Y'all are awesome!

I know my blood has copper toxisity, and I'm severely anemic. But, even eating is a very hard task, due to painful gi issues.
Posted 3/27/2019 4:34 PM (GMT 0)
You mention averse reactions to pharmaceutical antibiotics. I don't know anything about Dr. J except that people on this forum regard him highly, and what I'm about to say is likely to be controversial, but a good Lyme doctor should be able to treat Lyme and co-infections (and mold and gut issues and related ailments) without the use of pharmaceutical antibiotics. If you have allergies or adverse reactions to pharmaceutical antibiotics (or any other legit reason for not wanting to take them) then a doctor who truly is knowledgeable about this stuff should have many other tricks up their sleeve for you. I have allergies to two major families of pharmaceutical antibiotics and all the rest make me vomit all day, so they are not options for me. Lyme doctors without a broad knowledge base referred me to colleagues who knew more about herbs and other totally effective and legitimate treatments. Don't feel like pharmaceutical antibiotics are your only option if they are not something that works for your body. Everyone's path looks different in treating this complex illness. Some people have a lot of work to do to get stronger before they can handle certain treatments, too, so don't assume that what doesn't work now won't ever work. It's a long road, but it is possible to make progress!

As for mold, it's nice that you have a purifier, and I hear you that you don't have many options. Some people find a very small dose of a gentle binder helpful (bentonite clay, activated charcoal, modified citrus pectin, sunflower lecithin, etc.). I know I mention this a lot on here, but check out Toxic by Neil Nathan, a book that is a great help in figuring out where to start when these conditions are all overlapping and you are desperate and you feel like you don't know where to start.
Posted 3/27/2019 8:48 PM (GMT 0)
I think my body itself has trouble detoxing. Or, I'm so dessimated that it's easy to get overloaded.

I'm on tons of suppliments/herbals right now.

Detoxing alone last July/August helped stop the shock episodes.

I am much weaker now, than I was then.

When I can, I do infrared, baths, activated charcoal, and a few other things I can't remember.
Posted 3/27/2019 9:25 PM (GMT 0)
If you have mold you should try to treat that first, mold really messes you up and you won't make much progress otherwise. I'm not sure how to treat it myself, though binders are supposed to help. I have some too and I don't know how to approach it.
Posted 3/28/2019 12:53 AM (GMT 0)
Have you ever looked into cold laser therapy? It really helped me get a lot better.
Posted 3/28/2019 9:32 AM (GMT 0)
I don't think I've ever heard of, "cold laser therapy"

As for mold, I'm not sure how to test or help my symptoms.
Posted 3/28/2019 10:04 AM (GMT 0)
There is a urine test that confirms mycotoxins from mold, from The Great Plains Lab and RealTime Lab.
The most important step in getting rid of mycotoxins is to leave the house where there's mold. You can take binders to detoxify, and sweat (I am not sure sweating is an option for you at this time). Do you have a garden, can you sit outside in the sun? There are a lot of posts on the forum about mold, and there are also some useful websites. You can check your symptoms, but unfortunately there is a lot of overlap from different coinfections.
https://www.treatlyme.net/guide/mold-toxin-illness-lyme-toxin
https://biotoxinjourney.com/
https://www.survivingmold.com/
https://paradigmchange.me/

Did some of your issues worsen/emerge around the time you moved in the house you're currently living in? If your health continues to decline, if you really feel it is a matter of life and death I would urge you to leave the house just in case, and of course do the testing for mycotoxins.
Apparently english ivy plant kills mold spores, maybe this can't resolve the issues, but it helps.
Posted 3/28/2019 10:41 AM (GMT 0)

1000Daisies said...


Are you saying that you made a post about buying abx online and somebody deleted your post? (Or did you go back and delete it yourself?) Or is it hard to find with the search (the search here isn't the best, IMO)?
If it was deleted, I find that odd because there have been posts about buying abx online in the past here...

Yep exactly. Last week I made a post asking if anyone self treated with antibiotics. I also asked what websites they used and whatnot. A few people replied (I think one was Girlie) and then it got deleted a few hours later. And it wasn't me that deleted it. I honestly don't know why it got deleted.

😢

Post Edited (JayPoppa) : 3/28/2019 4:46:42 AM (GMT-6)

Posted 3/28/2019 3:05 PM (GMT 0)
Thank you! I didn't know that they could test for mold through urine.

I have a few essential oils that kill mold.

As for the post being deleted, that stinks
✚ New Topic ✚ Reply
12