I am not sure this has been done before.. but I would like to know about how much Lyme disease costs you (one person) per month?

I am thinking of using these figures to share with the Senate folks... or maybe in an article?

Anyone willing and able.. can you make an estimate and let me know? It took me about 10 minutes to do mine.. just rough estimates are fine.

I KNOW it will vary month to month.. and will change if you are better or worse.. and depending what meds you are on. But if you can.. try to get a decent idea and add it up using this for an example...

Example- You have one MRI in a year. It would cost about $1,200.00. Divided up that would be about $100.00 per month. Got it?

If insurance pays.. still count it as YOUR expenses.. and estimate.

****Please also indicate what tick borne diseases you have.. and how long you've been sick.****

Thanks!!!

Medical (LLMD or other) doctors visits

Chiropractic visits

Natural doctors visits

Nursing services

Specialists, eye, ENT, obgyn, gastro, etc

Physical therapy

Blood tests

Prescription drugs (antibiotics, pain meds, yeast, seizure meds, antidepressants, etc)

Supplements (from vitamins to sea salt, etc)

First Aid supplies- (examples IV supplies, wrist braces, heating pad, ace bandages, therometer, tweezers, sun tan lotions, etc)

Tests (example- Xrays, MRI, CAT scans, EKG, EMG, Spinal taps, neuro, cognative)

Special diets (additional costs for eating low carb, low sugar, fresh foods, etc)

Over The Counter medicine (sinus, asprin, Rolaids, Pepto, etc)

Help in/around home (cleaning, grass cutting, book keeping, car repairs, other chores you could do before but can't now)

Additional transportation (to/from doctors offices, pharmacy, labs, etc)

Equipment (oxygen, eye glasses, wheelchair, blood pressure cuff, hot tub, sauna, cane, wheelchair lifts and ramp, exercise equipment, gym or pool fees, yoga classes, etc)

Misc. expenses

Lost wages and benefits

Total monthly expenses

Medications-$1000 per month

Tests and docs-$150 per month

Supplements-$100 per month

chiro-$200 per month

Acupuncture-$50 per month

cleaning-$100 per month

Almost no friends
Lost junior year in high school
Not allowed to attend full day or extra curriculars for half of senior year.Now no desire to do so.
Rules regularly changing for school
Not physically and mentally able to drive or get learner's permit
Never invited to a dance or attended on own
Unable to continue varsity sports or any sports. Was an athlete.
Constant stares by peers and teachers
Always feels she is dirty.Takes 3 showers a day minimum.
Often feel of being an aggrivation going to nurses office
Obvious dislike by principal
Some telling you to stop talking about it to just do it..Commit suicide
Invited to one party in last 2 years
Severe and chronic pain
Extreme level of OCD
Unable to relate in any loving way to family or her own pets
Fear of every day
Dispair of continuing life due in her mind too lack of significant improvement..No hope.
Unable to date. No real takers..
Numerous suicide attempt including current one 2-25-05
Numerous visits in psych wards or psych hospitals
Low self esteem when she used to be one of the big fish on campus
Hopes for being a Vet probably unatainable
Constant love for the outdoors and woods has now become a fear. Was on the school district envirothon team for 5 years.
Cognitive skills so deterioriated that unable to take SAT's. Had been a distinguished honor student.
Fun loving personality down the drain
Antagonistic to many
Unable to participate in family functions
Turned 18 without a good grasp on reality.
Currently signed a hospital form to not let parents get info from the hospital..$#*^

The list could go on for a much longer time,forget the meds and Dr's bills, how do you put a price on this monthly? I suppose this is not what you want, but I think this is so much more expensive than the other things.So this monthly bill is bankruptcy!!with the constant potential for loss of life.
Sorry Tincup, I am sure this is not what you want but I am so po'ed with lyme and bartonella currently that this is invading all of my thoughts..lymemomtooo

Cigi

Inability to work.....no income so ??? prob. lose $1500-2000 in wages/mo.

Out of pocket - not covered by insurance - monthly: compounded heparin troches, hormones, oral antibiotics, supplements - $800-$1000/mo !!! This blew me away when I figured it up!

As lymemomtooo put it - how do you figure the loss of your 'normal' life?

Insurance costs since then approximately $75,000 divided by 5 months = $15,000 per-month.

Out of pocket meds = $1,000 per-month
Supplements = $100 per-month

Lost wages ? Don't even want to think about it.

Total = $16,100 per-month

Dem insurance execs is a reeeeeeeeal smart fella's, just look at da money they's a savin' !

Lost wages:
2,000.00 a month, as I have to work VERY close to home in a lower paying job, instead of in the city where my degree is worth alot more

Other than that, I can't put a price on the life stolen from me, or the time spent watching my kids grow- that I didnt get to do.

When I have it:

Epsom Salts: $20 est.

Podi Patches: $100 a month for first two months. Approximately $50 a month now for maintenance

Vitamins: whatever is on sale

Excedrin: I go through one bottle a month. I'll get back to you on this as I am working on medical costs right now.

Clay: I think that was $100...don't know how long it will last me at this point.

Power Chair was donated. Not sure how I am going to pay for batteries when they need replacing or wheels.

Amtrak: $60 approximately every 3 months.

LLMD: $190 every 3 months

Transportation (Gas Money): this varies too. Some people do not charge me and others do.

I recently had a blood test to check liver, etc. Not sure what that cost is.

In the past had MRI, Cat Scans, ...sorry brain is going...will come back to this.

Sorry, I am unable to come up with bottom line right now. Need to walk through each thing as it pops in my mind...teflon mind.

I definitely have lyme. Babesia suspected.

I've been strongly symptomatic 4.5 years. Not sure if I had it much longer and suppressed it.

Per month (all amounts are approximate):

LLMD visit: $350

Travel expenses: $75-100 (including staying over during bad weather)

Rx Meds: $120 (co-pay, not total med. cost)

Supplements: $150

Insurance (COBRA): $300 (would be free if I was able to be in school full-time)

Monthly Nursing Visit (while off IVs): $60

Various testing: $100 (not sure if this is accurate. doesn't include routine labwork covered by insurance)

Last year I was on IV antibiotics for 3 months at about $1000/week. When averaged out over the whole year, that comes to $1000/month.

Other IV supplies: Not sure. Covered 100% by insurance.

Okay, when I add all that up it comes to about $2000/month.

Wow! Thank goodness I have my parents to help me out with these expenses. And I'm really grateful to have my insurance paying for most of my meds and IV supplies! And this year hasn't been that testing-intensive as previous years.

This amount doesn't take into consideration various other expenses that I couldn't approximate, such as special diets I was on for about 6 weeks or lost wages because of being unable to work (I've never been able to work full-time so I'm not sure what I'd be ABLE to make).

I could approximate that I would make a minimum of $1000/month if I were able to work full-time at minimum wage. I'm able to work about 16 hours a month, so that amounts to $900/month in lost wages. That would bring my total to $3000/month. The actual number is probably higher than that, because I'm undoubtedly forgetting some other expenses and there are some things that I just don't know the cost of.

Imagine all the things we could do with all this money we spend on our health-related expenses. I'll take a cruise to somewhere exotic, please!

Peace and healing,
Annie

------------------


Click here to join Lyme Pals.

Click here to see my Lyme journal.

Without good insurance I would be dead or crippled right now.
Insurance pays the bulk.

This dosent include torn cartilage's knee, torn tendons and pain numerous 15 or 20 trips to hospitals wondering what was wrong also dont forget physical therapy knee, mri's etc .

During those 8+ months the total cost for me and the insurance company has averaged around $2,500 per month.

This includes all office visits, all lab tests, special tests such as MRI, LP & SPECT, drugs and supplements.

For Myself:

Medical (LLMD or other) doctors visits
$$30.00

Specialists, eye, ENT, obgyn, gastro, etc
$35.00

Physical therapy
$15.

Blood tests
$50.

Prescription drugs (antibiotics, pain meds, yeast, seizure meds, antidepressants, etc)
$150.

Supplements (from vitamins to sea salt, etc)
$15.00

First Aid supplies- (examples IV supplies, wrist braces, heating pad, ace bandages, therometer, tweezers, sun tan lotions, etc)
$30.

Tests (example- Xrays, MRI, CAT scans, EKG, EMG, Spinal taps, neuro, cognative)
$150.

Over The Counter medicine (sinus, asprin, Rolaids, Pepto, etc)
$30.00

Equipment (oxygen, eye glasses, wheelchair, blood pressure cuff, hot tub, sauna, cane, wheelchair lifts and ramp, exercise equipment, gym or pool fees, yoga classes, etc)
$30.00

Total monthly expenses $535.00

Loss of wages...$1500. a month

Medical (LLMD or other) doctors visits

$ 70.00

Physical therapy

$30.00

Blood tests

$75.

Prescription drugs (antibiotics, pain meds, yeast, seizure meds, antidepressants, etc)

$350.00

Supplements (from vitamins to sea salt, etc)

$15.

First Aid supplies- (examples IV supplies, wrist braces, heating pad, ace bandages, therometer, tweezers, sun tan lotions, etc)

$15.

Tests (example- Xrays, MRI, CAT scans, EKG, EMG, Spinal taps, neuro, cognative)

$200.00

Over The Counter medicine (sinus, asprin, Rolaids, Pepto, etc)

$30.00

Equipment (oxygen, eye glasses, wheelchair, blood pressure cuff, hot tub, sauna, cane, wheelchair lifts and ramp, exercise equipment, gym or pool fees, yoga classes, etc)

$100.00

Total monthly expenses

$885.00 on the low side...

Medical (LLMD or other) doctors visits

$70.00

Specialists, eye, ENT, obgyn, gastro, etc

$20.

Blood tests

$75.00

Prescription drugs (antibiotics, pain meds, yeast, seizure meds, antidepressants, etc)

$200.

Supplements (from vitamins to sea salt, etc)

$15.00

First Aid supplies- (examples IV supplies, wrist braces, heating pad, ace bandages, therometer, tweezers, sun tan lotions, etc)
$ 15.00

Tests (example- Xrays, MRI, CAT scans, EKG, EMG, Spinal taps, neuro, cognative)

$20.00

Over The Counter medicine (sinus, asprin, Rolaids, Pepto, etc)

$10.00

thank god i will get reimbursed once i hit my deductible

meds - about $150
supplements - $100
massages - $150
Chiropractor - $50
LLMD visit $175

so far no lost wages but who knows.....

what i've lost physically, spiritually, emotionally - priceless.

Couldn't you all find a cheaper disease to get?

Guess you'll think next time before you go around kissing ticks!

Thanks! I know this is hard to do.. but I AM writing it up and will use it to help with the bill being passed.

I would LOVE to get 100 people responding so I can report..

"out of 100 people responding... "

Can anyone else add their 2 cents??

IF you have 2 cents left after all those bills!

THANKS again!

$2k a month for lost wages (at least, considering that I haven't worked in about 3 yrs, who know with raises and what not)

$900 for first LLMD visit, including Igenex testing

$115 per month for each add't LLMD visit

$15 a month for gas to/from the LLMD

$20 a month for a babysitter to watch my son while I'm at the LLMD

Who knows how much my husband is losing to take time off to take me to and from the LLMD each month

$150 a month for supplements

$130 a month (right now) for prescriptions

Medical Expenses: 2-3000/month

This over the past 8-10 months.

About 6k a month--actual drug cost is fairly low these days

The 6k is for IVIG

So far insurance covers everything

Supplements: About 275 a month

Gosh the numbers are scary...

(and numbers are based on a time frame when I did not have to be hospitalized...just my average ole sick self...)

$15,730 a month includes what insurance pays, along with lost wages, and my out of pocket...

$5,762 are my lost wages and just my out of pocket...and mind you I did not have a high paying job...currently on SSD.

Lyme positive by PCR
Bartonella, Ehrlichia, Mild Babesia diagnosed clinically, Mycoplasma added to the mix when tested energetically.

Oh, Almost forgot to add, sick nearly 5 years

4 of 5 have lyme

Hubby worst
medical expenses over 5 years range from $600 to $4000/month

lost wages $3500/month

lost self esteem and quality of life-UNMEASURABLE

What about the things he can't do, that others do and take for granted......gee, do you want me to get specific.....NOT::{}What abour rhe chronic pain? We have learned that what is good for our family would "suck" ('scuse french) for others. He has been suicidal and homicidal..no kidding here.

Son #2 currently on Home/Hospital teaching because of LD. Treatment for LD currently about $350/month

Son #1 treated for 8 months @450/month

Mother treated for 8 months @500/month

respectfully submitted,
milkmade

Boy, scary numbers here. Don't know what I would have done without insurance. Thought I would break it down in case you got specific. I'll give the cost over the last 12 months, and then average.

Prescriptions:
Insurance paid $18,600
I paid $940.00
Total: $19,539.00

Doctors visits:
Insurance paid $500.00
I paid $2910.00
Total: $3410.00

Lost Income: $2400.00

Blood Tests:
Insurance paid $1700.00
I paid $555.00
Total: $2255.00

quote:

---

Originally posted by kam:
Excedrin: I go through one bottle a month.

---

I've gone through 6 bottles of (generic & brand name) Excedrin in the last two months. I combine the migrane stuff with the tension headache ones. I also take 2-4 generic sinus pain reliever things (acetaminophen & pseudoephedrin hydrocloride) every day. I think I've found the right combination to take the edge of this two year long headache.

Around $800 for first LLMD visit, including Igenex testing

$150 per month for each add't LLMD visit

$100 a month for vitamins/supplements

$?? a month for prescriptions - doxy was so cheap I don't even remember.

$50 for OTC pain-relievers

This started with 10-days in the hospital with menegitis about 20 months ago. The bill was over $50,000 but I quit paying attention when my $5000 insurance deductible was met. I guess you could pro-rate that over the life of this disease.

I actually doubled-up on insurance this year so I guess I could count the extra $200/mo there.

On the flip side, I've saved money on jogging shoes, concert tickets, and beer.

---------------------------------------
I left out the 8 months of visits to traditional doctors/neurologists that did absolutely nothing. I have no idea what that cost because I'd already hit my deductible for the year. I didn't even open the statements.