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Posted by Tincup (Member # 5829) on :
 
Thanks again to everyone responding.

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


[This message has been edited by Tincup (edited 27 February 2005).]
 

Posted by Corinne E (Member # 4670) on :
 
Hi Tincup,

Will tell you tomorrow, it's too late to figure out right now. Although I was going to say too much.
 

Posted by HaplyCarlessdave (Member # 413) on :
 
When I was the worst, and on the most expensive drugs, around $1k a month or maybe a little more, including direct doctor expense. But, oh yes-- if you include transportatation it goes up to $1100 . And thats still low, perhaps- sometimes there was some pretty friggin' expensive "lab work", too. And this is direct epense . Combined with lost income the expense gets even higher.
DaveS
 
Posted by HaplyCarlessdave (Member # 413) on :
 
including lost income and physical rehab,
I'd revi$e my estimate to an average of nearly $2000 a month....
DS

 
Posted by shadow13 (Member # 1467) on :
 
When on IV's that cost alone is almost $1500 per week - not counting the home nurse which is probably about $100 a week at least.

Right now using your list and including lost wages and benes my monthly expenses are about $5480.
 

Posted by shassler64 (Member # 3479) on :
 
Lost wages-$5ooo per month

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

Total $6600 approx
 

Posted by lymemomtooo (Member # 5396) on :
 
Not sure..Will try later..How about the following:

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

[This message has been edited by lymemomtooo (edited 27 February 2005).]
 

Posted by Lymetoo (Member # 743) on :
 
If you're talking about only medical expenses, I would say $600 a month.

lymemomtoo said it all
 

Posted by cigi (Member # 6600) on :
 
Right now, between docs, meds, supplements for me and my son around $800.00 per month. Some months it's more - rarely less.

Cigi

[This message has been edited by cigi (edited 27 February 2005).]
 

Posted by fatigued15 (Member # 6437) on :
 
This is a scary one to admit too. With supplements, doctor visits, travel, food, acupucnture, Qigong we spend at least $1050.00 a month out of pocket. ABX covered by insurance (for now I think it is only a matter of time.) are another $600.00 a month.

My daughter has been sick for a little over 2 years. We are new to Lyme she was dx about 4 months ago.
 

Posted by lynnic86 (Member # 3634) on :
 
tincup:
gotta figure this one out and not able to today.. will get back to ya.
lynne
 
Posted by ShelleyA (Member # 49) on :
 
Easily $100/mo

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

In 1990's I prob. had spend or lost around $20,000 in medical bills and loss of work...travel for answers (Mayo)...inability to cont. education for higher wages for higher paying job.....
 

Posted by lymeyinok (Member # 5817) on :
 
Will take some time to figure later the cost of doctor visits and travel out of state and the fact that insurance covers only 1/3rd of these dr. visits and tests.

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?

PRICELESS !!!!!!

 

Posted by NP40 (Member # 6711) on :
 
Let's see, son was diagnosed Oct. 04.

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' !

[This message has been edited by NP40 (edited 27 February 2005).]
 

Posted by TheCrimeOfLyme (Member # 4019) on :
 
Meds, supplements:
200.00 a month. Insurance pays for all scripts though, so this is my out of pocket expense.

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.


 

Posted by kam (Member # 3410) on :
 
I am very limited on what I can spend each month.

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.


 

Posted by monkeyshines (Member # 6406) on :
 
If I understood correctly, based on last year I'd say about $4,000 a month was paid on my behalf.

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.



 

Posted by arg82 (Member # 161) on :
 
Okay, I didn't go indepth with figuring this out, but here's what I came up with:

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.

Lyme Out Retreat Information Webpage

 

Posted by hiker53 (Member # 6046) on :
 
Since on I.V.'s $8,000 per month

[This message has been edited by hiker53 (edited 28 February 2005).]
 

Posted by treepatrol (Member # 4117) on :
 
?
$100.00 to $400.00 a month
wife included now same.

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 .

[This message has been edited by treepatrol (edited 28 February 2005).]
 

Posted by cmichaelo (Member # 5873) on :
 
I've been treated for Lyme and Babs since June 2004.

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.

Michael
 

Posted by lymebrat (Member # 3208) on :
 

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



 

Posted by Lymetoo (Member # 743) on :
 
OH.....I have very good insurance. So...my $600 a month is only the co-pay part. I would hate to think what it would be without the insurance.

------------------
oops!
Lymetutu

 

Posted by lymebrat (Member # 3208) on :
 
For my son Derek:

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...



 

Posted by lymebrat (Member # 3208) on :
 
My Daughter

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

Total.... $425.00

 

Posted by artbyjessie2 on :
 
jeez this is an expensive disease.

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.


 

Posted by riversinger (Member # 4851) on :
 
minimum of $5,500 per month

[This message has been edited by riversinger (edited 28 February 2005).]
 

Posted by Christine202 (Member # 6158) on :
 
Last year my husband and I paid out 26,000 in prescription meds only...then the monthly Dr's visits...hospitalizations...tests....I would say we were well into the 60,000 range for last year. What a great health care system we have...!
 
Posted by Tincup (Member # 5829) on :
 
Great day in the morning!

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!


 

Posted by Kari (Member # 4154) on :
 
this last 12 months averages out to about $5200.00 a month before insurance and around $650.00 a month after.
Lost wages are around $1500.00 a month.
 
Posted by WIZARD (Member # 4597) on :
 
19 months over $250,000 (covered by insurance) = 13,157.00 per month average

Wizard
 

Posted by JillF (Member # 5553) on :
 
Right now (and I just started treatment):

$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

And, this is just for me. My husband still needs to be tested (he is having faint symptoms now) and my son probably has it
 

Posted by liz28 on :
 
Approx. $650 insurance.
$250-300 out of pocket.
When my LLMD leaves insurance company, it's $350-575 for initial visit to new doctor, $125-250 for each additional monthly visit.
Have lost five years of work. Entry level people in my field make $40-80k. Most people with my education and experience are in high demand.
 
Posted by lisag (Member # 6798) on :
 
My husbands lost wages: 5,000/month

Medical Expenses: 2-3000/month

This over the past 8-10 months.


ARRRGH!!!!!!
 

Posted by MADDOG (Member # 18) on :
 
I can't afford to go to a doc. even if I had one.

But if the meds I take were human meds probably about 1000 bucks a month. MADDOG
 

Posted by yankee in black (Member # 4309) on :
 
Hi,

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


 

Posted by lhm312 on :
 
$1100 a month, includes rx meds, alternative dr. visits, supplements, foot detox pads, over the counter stuff (epsom salt, baking soda), counselling, massages.
 
Posted by lymemomtooo (Member # 5396) on :
 
up
 
Posted by James H (Member # 6380) on :
 
About $2,500/mo for TWO of us.

A little hard to estimate having just started. Lots of $ on initial lab work etc., but not much antibiotic expense yet.
 

Posted by Mathias (Member # 5298) on :
 
At this juncture around $300/month.
 
Posted by Wink9 (Member # 4516) on :
 
I would estimate $300 a month. I am very lucky.
 
Posted by Kira (Member # 2676) on :
 
Hello there,

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

[This message has been edited by Kira (edited 01 March 2005).]
 

Posted by milkmade on :
 
lymemomtoo said it all

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


 

Posted by HEATHERKISS (Member # 6789) on :
 
$2370.00 1st month

$370.00 ? 2nd month
 

Posted by LymeinME (Member # 6849) on :
 
I have lyme and ehrlichia. I've been real sick for 4 years, but suspect I've had lyme for 20 years lurking inside me.

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

GRAND TOTAL: $27,604.00
DIVIDED BY 12 MONTHS = $2300.00 cost per month.

 

Posted by lymemomtooo (Member # 5396) on :
 
up for Tincup
 
Posted by CharV (Member # 5849) on :
 
Having just done my taxes (yuck), I have spent a little over $2,000 per month on treatment. I definitely have Lyme, but nothing conclusive on coinfections and I've been symptomatic for almost two years.
 
Posted by DJP (Member # 5893) on :
 
Tincup,
So far my daughter's meds have been covered by insurance. Do you want me to figure out the amount?

I haven't started meds yet, so I don't know what mine costs yet.
 

Posted by SteveInMinnesota (Member # 6661) on :
 
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.

It all seems to wear off by 4pm everyday and I just ride out the headache until I can get home and go to bed. I take a couple night-time tylenol before bed so the headaches don't wake me up.

 

Posted by SteveInMinnesota (Member # 6661) on :
 
Guess I should go through my expenses as long as I'm on here.

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.

[This message has been edited by SteveInMinnesota (edited 02 March 2005).]
 

Posted by brenda b (Member # 2176) on :
 
[QUOTE]Originally posted by Tincup:
[B]Thanks again to everyone responding.

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.
YEAR ONE: The first year I saw 10 Dr's.
1 primary care + blood tests - antibiotics,
2nd primary care + blood tests, antibiotics- found auto immune problems - sent me to endocromologist (3rd) Dr/
Sent to "specialist"for lyme = 4th Dr
New primary care Dr = 5th DR
Sent to Orthopedic surgeon (6th Dr) who did extensive blood testing and x-rays - bone scans with contrast - MRI'S and sent me to phsyical therapy. (Recommends I be treated for lyme).
Sent to RHUMATOLGIST who did more extensive blood testing and x-rays (7th DR)
Recommends I be treated for lyme.
Find a LLD to treat me! 8th Dr.
Treated with IV Rocephen for 28 days + 4 weeks of Azithromyacin and IM injections of penicillin - weekly nursing while on IV - cost unknown.
Developed ocular manifestations of lyme
Go to first (8) eye Dr,- sent to Lyme eye Dr specializing in ocular problems related to lyme (9) Dr who sends me to Columbia University eye Clinic (10) Dr.
2nd YEAR
Lyme caused autoimmune problems (Hashimoto's) - will need to see endocronologist for the rest of my life and be on sythroid for the rest of my life
Dr visits - 4 times a year + quarterly blood testing.
Developed Lyme related liver problems -
See gastroenterologist for bloods and ultrasound - liver biopsy and MRI.
See gastroenterologist every other month for blood testing and exams. Liver problems worsen - Become Hep C positive - start Interferon and Ribaviron - about 4000$ a month for 22 months.
Given weekly injections of Neupogen and Procit
Treatment unsuccessful due to Lyme.
Have to be retreated for lyme - Blood testing, plus antibiotics, pain meds - cost unknown.
Unable to work for the past 4 years - loss of income - apply for SSD - (denied).
meds at this time
synthroid
tylenol 3
Terazosin
Glucosamine Chondroitin
Silver salts
Yoga - recommended for pain (weekly)
Flax seed oil
Eye guard vitamins

The cost of being inadequately treated for lyme in the first few weeks is beyond what I can calculate myself.

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

 

Posted by josiestrann (Member # 5319) on :
 
ok, estimate of medical expenses per month....MRIs of brain and c-spine $800, prescriptions before insurance $650, prescrips after insurance $150, supplies & equipment $120, Dr visits before insurance $1700, after insurance $100, labwork $90

 
Posted by nan (Member # 63) on :
 
$400

covered by medicare for visits...LLMD
 

Posted by djonathann (Member # 6776) on :
 
$4,000 per month. ****ing ruined my life. since the EM rash, I've lost my job twice, am now filing for disability, have not been able to put away any savings even though I made a lot of money and before lyme when I made a lot of money I was able to save, have not had a girlfriend even though I never had a problem with this before, and now I have no credit even though before lyme I had near perfect credit.

oh did I mention I'm in constant pain? and I can hardly think straight? life sucks when you have lyme disease dude.

has anyone ever gotten better? If so what did you do? which doctor did you go to?

I end up spending all my time researching lyme disease - I need a doctor who will do this too - but the only one I know of charges $500 an hour and doesn't take insurance. I think he could help me get better (I won't mention his name due to fear of whatever evil ****ers want us all to suffer an agonizing death trying to put him out of business so they can buy hummers).

anyone have a doctor that can get me better?

I need co-infection tests, but I can't afford them. my parents won't loan me the money. again, not covered by insurance. **** man - this is just unreal, sometimes I wonder if I'm still on earth or if my body is in hell. it feels like it, with the constant burning pain and all. hmm...
 

Posted by jewood69 (Member # 5945) on :
 
$500

Never added it up before. Wish I hadn't. Thanks to Kam's post for reminding me about the Podi patches.
 

Posted by lymemomtooo (Member # 5396) on :
 
up
 
Posted by MonaR (Member # 6972) on :
 
Whew ... where to start!

Lost wages - $3500/month

I have a great insurance plan through my husband's employer so I don't know the actual medical costs. With tests, biopsies, surgery (gallbladder) I'm sure it's 10's of thousands per year in addition to IV expense.

IV Rocephin 5x/week with daily nurse visits - I have no idea, nurse is $150/day I believe and supplies and medicine I'm guessing are appx. $1500/week. Been on IV for 5 months, expect over a year total. Oh ... then there's whatever the insurance paid for implanting the Mediport and what they will pay for surgery again to take it out eventually.

dr visit co-pays, co-pay for weekly blood work, co-pays for medications - appx. $550/month, blood work can be $200-700/week easily.

supplements and over the counter meds. prescribed by dr (i.e. acidophilus, milk thistle for liver, daily aspirin for blood clots, Mucinex, blood pressure machine) - $180/month

These are the basics, it's more for other complications, such as dermatology problems (vitamin E oil and Neosporin too), gallbladder surgery, other specialists and tests, etc.

My gosh ... how depressing is this, I don't want to see the total ;~)

PS ... Have Lyme, Rocky Mountain Spotted Fever, babesia (clinical dx), mycoplasma(s), various viruses and blood clots. In addition, pulmonary AVMs which are from the blood disease HHT increase costs ... can't get ANY air bubbles in line! Not caused by Lyme, but it complicates treatment.

Yep Tin ... guess it's cheaper to kiss frogs than ticks

------------------
Ramona

[This message has been edited by RamonaW (edited 03 March 2005).]
 

Posted by achey (Member # 6284) on :
 
cost including what insurance co pays...
Meds approx $3600./month
Labs $200./mon
suppliments $250./mon
PT $600./mon
Dr visits $1500./mon
Lost wages $2000./mon
Husbandz lost wages, transportation food diet change etc


Easily total $10,000/ month

Chronic neurolyme, erchiliosis, babesiosis

Yeah baby it's this fun?!
 

Posted by needleseye (Member # 6037) on :
 
Approximately $750 per month inc. Rx, prorated LLMD costs and supplements

I was dx'd with Lyme in the summer of 2004 and was not tested for any other tick borne diseases
 

Posted by lymemomtooo (Member # 5396) on :
 
Up
 
Posted by Lymeblue (Member # 6897) on :
 
$1,100
 
Posted by Walnut (Member # 6585) on :
 
About $150-200. And I have very good insurance coverage.
 
Posted by lymesux (Member # 6248) on :
 
Hard one - atleast $6100 lost wages per month gross, rx total - if lyme is what caused my problems and in turn my kids' problems - $3k per month, doctor visits approx. $150/month,
supplements, approx. $200
So for myself and my two kids a total of
$9450
 
Posted by bg (Member # 46416) on :
 
all medical:

drs. visits, hospital, xrays, blood labs, ENT/eye specs = $593 month

therapetuci massage $ 50 month

eye glasses & NOIR, no infra red, no UV sungalasses $ 50 month

rx meds $317 month ...no IV

supplements $ 65 month

equipment supplies $ 10 month

neuro psy testing $100 month

OTC meds $30 month

lost wages, health &
dental insurance $3,000 month

TOTAL MONTHLY = $4,200 month
==================================

Betty G., Iowa

Forgot to say: 7-04 dx w/late-stage, chronic lyme and 34 yrs. misdx!

I have NOT tested yet for any co-infections.

[This message has been edited by bettyg (edited 05 March 2005).]
 

Posted by lymemomtooo (Member # 5396) on :
 
up
 
Posted by DR. Wiseass (Member # 6777) on :
 
LD is daily causing me any sense of a quality of life - which is of course: priceless.


 

Posted by Pitnum (Member # 4906) on :
 
It is difficult to keep track of the numerous expenses, but my guess would be in the ballpark of $800 to $1000 per month.
 
Posted by cindy_leigh (Member # 3514) on :
 
It varies, when I'm on abx it could be as little at a $15 co pay, for drugs. Oh wait-- Dr. P-- $250 per visit. Mepron and Zith-- ~$1100 for meds, my insurance covers all but about $150. I go for months with no sx, and thus no meds, then lyme starts creeping back, and back on abx.
 
Posted by lymemomtooo (Member # 5396) on :
 
up
 
Posted by deb obrien (Member # 5239) on :
 
tincup - i have hesitated to answer this as just don't have the energy to l;ook it up - however, last year i did 5 cycles of mepton and zith si i would guess meds and supplements would have been $1000/month - medicare pays dr vists and lab tests ???$500/month

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

 

Posted by proud pup (Member # 4152) on :
 
Since Iv started total is around $7000 a month

That is not counting lost of income which last year was 200,000 and we have now depleted our entire savings and have no money now for our 3 kids. NOTHING... For one whole year of treatment we has NO med. coverage and was paying as high as $4000 a month in meds alone.(For 3 of us) One bottle of mepron was $850 and my husband had to use 3 bottles a month. We now have med coverage.Thank God!!!
 

Posted by BOEJR (Member # 1734) on :
 
In 2001 about $35,000. not counting trips abroad trying to Dx mysterious ailment, copays for 13 different ducks, tests or suppliments,

In 2002, about $25,000. in ABX , treatments, suppliments etc, I bought alot of them out of the country.

in 2003, about $30,000. in ABX, treatments, suppliments, tests, spec scans, sleep studies, anti everthing meds for two..We both have it : 0

In 2004, about$70,000. for ABX and a HBOT chamber.

Price of near loss of sanity, never ending aches and pains....priceless.


 

Posted by beach4so (Member # 3832) on :
 
Gezz,

Lucky I just did our taxes..

we paid 25,000 for the year out of our pocket..how much the ins. company paid..very little so i will just go with the 25,000.

25/ 12 months---- 2083.00 a month.

Dominic is the only one dx all year. I got dx in Oct and the other two kids on Dec 30, so I can easily say 2083.00 pretty much all for one person per month.

Starr
 

Posted by JRB (Member # 48784) on :
 
JUST MEDICAL EXPENSE
2000 $2093.00 / mth avg
2001 $1250.00 / mth avg
MYSTERIOUS AILMENTS
DISCOVERD LYME/TREATMENTS
2002 $1000.00 / mth avg
2003 $7083.00 / mth avg
2004 $5665.00 / mth avg
2005 $290.00 / mth avg 2 mth's

 
Posted by hatsnscarfs (Member # 6562) on :
 
$300. average Drs. Visits
$120. Podi Patches
$100. Vitamins, antibiotics, epsom salts
$140. Chiropractor
$100. Hats, scarfs, clothes to avoid sun, handwarmers etc.
$400. Health insurance that doesn't cover much
$100. Extra to have all organic food
$ 50. Extra dental cleanings
$280. massages
----
$1,590. Out of pocket monthly expenses
$7,500. Guesstimate of monthly lost income
------
$9,090. Monthly cost of Lyme.

 
Posted by pq (Member # 6886) on :
 

On average,total cost = $3,000-5000/mo.
 

Posted by Beverly (Member # 1271) on :
 
Last year it was probably over 5000 for me. This year it has gone down, average is probably about 100 a month. Hope this helps.
 
Posted by bg (Member # 46416) on :
 
up for other newbies coming aboard this Maryland train.......

Betty G.
 

Posted by sarahjane (Member # 6517) on :
 

I have Bb- clinical diagnosis and indeterminate bloodwork
I have been treated for 3 months

It costs me app$ 300/month


 

Posted by sarahjane (Member # 6517) on :
 
Whoops-Can I change that?somehow I forgot about $2000 of tests....please make that $1000/month!
quote:
Originally posted by sarahjane:

I have Bb- clinical diagnosis and indeterminate bloodwork
I have been treated for 3 months

It costs me app$ 300/month


 

Posted by rcmdesigns (Member # 5922) on :
 
i figure around $2000 per month, plus or minus $200 depending upon the expense of the meds i am on currently. if i have to do iv, that will be a whole lot more. i don't have insurance. and that includes my lost wages since i am unable to work, although i did not make much before i got really really sick because i have been sick for a very long time and didn't know why. i have had borreliosis (and co-infections but not exactly sure which ones) for 35+ years but was re-infected last summer and was diagnosed for the first time. i have been on treatment since november 2004.
 
Posted by Coyotecrazy (Member # 6707) on :
 
Cost averages $350.00 per month AFTER diagnosis.

Cost for diagnosis/misdiagnosis $2,000.00
 

Posted by Tincup (Member # 5829) on :
 
STOP HERE.

Thanks!

Will let you know when I get the figures done.


 

Posted by TinaAStPierre (Member # 7120) on :
 
I have no income and most of my medical expenses are now state funded (YEAH RHODE ISLAND!!)

However, last year (the last half anyway) was over $4000. after that you add the $28,000 in lost income you have to try and figure out a a monitary value for my whole life going to pot.
 

Posted by Michelle M (Member # 7200) on :
 
Let's see...

LLMD visits monthly... $175 (rest covered by ins.)

meds - copays of $25 each $200.00

supplements... 100.00
(probiotics, etc.) _________

Total $400.00

So far still working through treatment, so haven't lost income (miracle!) or insurance yet, but feel for those who have....

Michelle M
 

Posted by tykee (Member # 2285) on :
 
I average about $1000 per month, BUT am not seeing all my doctors ($30 per visit) or taking all medications and vitamins my doctors prescribe due to lack of money.

Glucosamine just cost me $12 "out of Pocket".
 

Posted by tykee (Member # 2285) on :
 
AACK...screwed up. The costs in previous message were after insurance!

Last year insurance paid about $100,000.
This year (no IV) they have paid $4000.

Tykee
 

Posted by Andie333 (Member # 7370) on :
 
Total: $3,685


 



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