how do you guys afford this?!

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/23/2008 9:55 PM (GMT -6)   
i am shocked at how expensive it is to see a llmd. 500$ first time, $300 follow-ups! not including the tests, treatment.
i got sick at 23, right after volunteering in africa. i didn't return with much money, and haven't been able to make as much as i expected at this point due to being sick. that seems like sooooooo much money to me right now. i am especially terrified that i wouldn't have lyme's and it would be a huge amount of money thrown down the tubes.
how do you all do it? i can't imagine i am the only person who finds that to be a lot of money all at once. should i try to order the igenex test, and have my primary care doc run the test, though he knows nothing about lymes and ruled it out for me a long time ago?
any suggestions would be so great.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/23/2008 10:34 PM (GMT -6)   

Gracie: Igenex does not take insurance, so if you had your primary doc run it, you would still have to pay up front. (I did)  I am told they only take medicare. Hope that changes some day and they honor our insurance.  Maybe see if your primary could order the CD57 or something that might help you make a diagnosis. Something your insurance would pay for. I hear you ...I have spent all of my savings and I am still looking for answers. Its very frustrating and draining. Take care...D


runningiri
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 12/23/2008 11:02 PM (GMT -6)   
Gracie,

Unfortunately this is a very expensive disease to fight. Since I've been diagnosed in 2005 (after being ill for 8 years) my husband and I have spent well over 100,000!! Of course this is on the high end seeing that I went to a LLMD that only does IV's in her private clinic at 1,100 and I have sought the treatment of many alternative practitioners. To tell you the truth, I'm not sure how we have afforded it all. We have had to borrow against our home, take out loans and get funds from our parents. It is very sad that this disease is not accepted within the medical community at large and lyme sufferers are left with no option but to go into major debt. It stinks, I know.

-Jennifer

ilg713
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 12/24/2008 12:04 AM (GMT -6)   
I am one who thinks treatment is High!!
I went to a LLMD twice and had to quit treatment as I just couldn't afford it.
Currently I am just trying to figure out what to do next.
 
ilg713
 
 
 
 
 
 
 
 
 
 

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 12/24/2008 6:56 AM (GMT -6)   
For us the answer is, we don't. We have spent everything we have and have even filed bankruptcy. My husband is asking how low can we go. It is physically, emotionally and financially draining. You find the money where ever you can and hope that you get well sooner than later. When it comes to your health you have do whatever it takes. And it has taken a toll on our lives but we have also met some wonderful people and gotten great emotional and spiritual support.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/24/2008 7:54 AM (GMT -6)   
"If you don't have your health, you don't have anything." I never fully appreciated what that meant until I got Lyme disease.

I am very fortunate. I have good disability and medical insurance through my former employer and my Medicare was approved (6 years after applying) and my husband and I are financially comfortable. BUT, all of that only made it easier to pay for all of the testing and medication.... it did not make it easier to finally get tested for Lyme disease, it did not make it easier to find someone to write the rx for 1 bottle of doxycicline, it did not make me well.... and, with this disease, having all of that on one's side makes no difference. I was still treated horribly by doctors who don't believe in Lyme disease or who don't believe Lyme disease exists outside of Connecticut. I still had to fight for every bit of antibiotics that I have received. If someone had told me that I would be spending my 30's (and now 40's) fighting for antibiotics, I would have laughed.

I appreciate very much what I have. My heart goes out to all who struggle, day to day, with the expenses of this disease. When I get well, I am going to be the loudest activist for Lyme disease testing and treatment - Pat Smith, watch out!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/25/2008 9:43 AM (GMT -6)   
It is a lot of money. I think your reg doc seems to be trying to help you. I would say trying a cd57 first may be a way to go. But you'd need to print off all research for it and give it to you doc probably. Otherwise, Igenex is pay up front which is $200 just for western blot Igm igg. But if it came back with any lyme bands you may get your doc to help you out. I am a part of a wonderful lyme disease org. that sends educational materials to doctors. If your doc is willing to help you, you may want to have him sent some of these materials. A huge chunk of it is burrascanos guidelines. Very helpful in choosing treatment. Like I said earlier, my mom has a reg doc treating her right now.

I wish you luck.

ilg713
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 12/25/2008 12:52 PM (GMT -6)   
What is a cd57?
 
ilg713

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/26/2008 6:02 AM (GMT -6)   
I think the cd57 is supposed to test the strength of your Natual Killer cells..... I have a 4 on Quest. Don't ask me what this number means, I just know that's it's not good.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 12/26/2008 10:20 AM (GMT -6)   
The cd57 is also known as a Stricker Panel, after Dr. Stricker, who figured it out. Yes, it tests the level of natural killer cells that are specific to lyme disease. Some docs swear by this test, and others think it's not really reliable. I forget what the range of normal is -- something like 60-200? A lot of docs are using a low result as proof of lyme, since the other tests are so unreliable.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


hiker53
Regular Member


Date Joined Aug 2008
Total Posts : 81
   Posted 12/27/2008 1:34 PM (GMT -6)   

I personally don't believe the CD57 is a good measure for lyme.  Mine is high and I am pretty ill.  I know others who have low CD57's and show few or no symptoms.  That is just my opinion and I would not use it as a replacement for Igenex or Clongen labs to diagnose lyme.

Hiker53

 


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tapa
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 12/27/2008 3:11 PM (GMT -6)   
Hi i am new at this...My daughter is fighting chronic lyme ,for some years now and is on antibiotic treatment.the worst symtom she has right now is...very severe psorisis-mostly on her back.It is completely raw.Because she has lost about 85% use of both her hands --she cannot scatch and just deal with the madning itch and burning pain.She was told that she cannot take steroids or cortizone .Is their anything for the relief ????even in pill form????

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/27/2008 4:46 PM (GMT -6)   
Tapa: Have her bath in epsom salt, 2 or more cups to a tub of warm water and soak. Also I found that coconut oil in the bath and also orally will help. D

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/27/2008 8:19 PM (GMT -6)   
thanks for all your suggestions, guys. i think i will order the igenex lab, and have my primary care run it. he may not be able to interpret it - are there people here who would be able to help? would i be able to with appropriate knowledge?

limberlostgirl
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 12/28/2008 12:50 AM (GMT -6)   
we have drained our savings and over extended ourselves too! It was bad enough when it was just my treatment but when we added my husbands last summer~ well it has stressed us so much that we need to sell our home, down size and make some other changes to be able to keep up with treatment/dr. appointments etc..... wish it was all covered by insurance! :-(

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/29/2008 3:10 PM (GMT -6)   
Gracetiger. I'm just curious about all the symptoms you have. If $ is tight then you really need to weigh the options before you spend $ on an igenenix test for lyme. What you are dealing with may be different than lyme, I thought i read that you drank from a well with dead rats in africa.

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/29/2008 10:05 PM (GMT -6)   
hi phsinvert-
i got sick right after returning from living in africa. i was 23 years old when i returned, in perfect health. i was a college athlete, no mental/emotional problems, well educated, active, all that. i had started the birth control pills about three months prior to being sick as well.
it began with panic attacks. out of nowhere. began one day, then i was having debilitating panic attacks about three times a day. no triggers. then came facial flushing. pretty transient facial flushing, but with a lot of burning. this eventually progressed, about a month later, to bright red, burning pain, 10 hours long flushing. i had no history of blushing or flushing ever.
during the first couple of months of being sick, i was experiencing inappropriate sinus tachycardia (heart rate would go wayyyy too fast in response to stimuli; for example a minor exercise which would normally cause my heart rate to go to about 130 would quickly make it go to 220). i also developed chest tightness and shortness of breath. major heart arrythmias, including a psvt (sudden drastic rise in heart rate out of nowhere). then came the swollen finger joints. first the joints in my right hand swelled up, i could hardly bend them, they were really deformed. i developed these little nodules on my fingers that were incredibly painful. then this migrated to my left hand. after about three months, most of the swelling subsided.
i also have really low blood pressure, a great deal of vision problems (floaters, flashing lights, bugs crawling in the corners of my eyes, static, can't adjust to night lights). major major cognitive problems (mixing up words and letters and words. not able to get out full sentences. mixing up numbers. horrible horrible short term memory. not able to perform really simple, everyday tasks). also lots of gastro problems (ibs, huge stomach bloating, a lot of pressure in stomach area).
also have a very stiff back of neck and a huge amount of pressure in my neck and head - a feeling like all the blood is rushing to my head, or like it is "clogged" in the arteries and veins of my heck and head. hard to explain, but really really debilitating.
random shooting pains, especially in what feels like my kidneys and spleen. random muscle twitching in eye and fingers, sometimes in legs. hip pain.

i could probably keep going. but i have a lot of symptoms:) i am not sure at all that this is lymes. i had been diagnosed with postural orthostatic tachycardia syndrome, and assumed that is what i had. but i recenctly went to a specialist at stanford, who ruled it out, but agreed i definitely have some forms of autonomic nervous system dysfunction.
i have researched autonomic nervous system disorders endlessly. i have researched the heck out of african viruses and bacteria. nothing fits. when i read about lymes, it just seems to be the most closely related to my symptoms. but again, i really have no grounds to base that on, because i have only been "titer" tested.

well i am probably rambling. you asked about my symptoms, and that usually requires a lot of time!!! i am planning to see an infectious disease doc, but to be honest, i am soooo tired of all the specialists and tests and no answers. i wasted a really long time thinking i had a condition that i do not have, and that i never believed i have, and i am just afraid that it has been lyme's all along and i'm going to spend a lot more time and money on doctors and tests who won't acknowledge lyme's. i have spent two years looking for answers now, and i don't want two more to go by with nothing.
i have always been really outdoorsy and do remember tick bites. it seems super possible to me.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/30/2008 10:43 AM (GMT -6)   
I am no doc. But it sounds more like a form of bartonella than lyme to me. Bart can be gotten all over the world and is often found in poor areas from what I remember reading. There aren't good tests for this either but there is a VEGF test that may help.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 12/30/2008 7:56 PM (GMT -6)   
Hi Gracietiger,
 
I would do more research.  I'm not a doctor either but it's possible you may have West Nile Virus.   Did you take a look at this site?
 
 
In any case, do yourself a favor before spending lots of money on testing and buy Dr. Jernigan's book called Beating Lyme Disease, 2nd Edition.  His daughter had West Nile Virus.   His book is fascinating with lots of information.
 
You can buy his book at:
 
 
Hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 12/30/2008 8:58 PM (GMT -6)   
Wow. this is a mystery diagnosis if ever there was. A few things match Lyme disease. Have you been tested? That would support a diagnosis but not necessarily rule it out. There are a few LLMDs who practice other medicines like being a family doctor who take insurance. Find one of them. Even if you have to drive 2 or 3 hours like I do. I cannot bring myself to pay through the nose as I have very little money as it is, and I am a little suspicious. I've gotten skeptical of every doctor lately -- except for LLMDs of course.

Why is that?

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 12/30/2008 9:16 PM (GMT -6)   
interesting suggestions. thanks guys. so much.
the thing is, i have done endless research on my symptoms and allllll kinds of conditions. i have even read books on biochemistry and physiology to understand the possibilities of what could be going on. i have found nothing that seems to fit for me... until i read the symptoms of lyme's disease and felt like i could check yes to almost every one. it seems like the best fit as of right now, just based on my previous history of being totally healthy, and some, of being very active in the outdoors, having a tick bite, then getting really sick with all these weird unexplainable symptoms. perhaps it is something else like west nile, but i just feel like i end up saying "no" to many of the symptoms.
i feel so lost. i had been diagnosed with postural orthostatic tachycardia syndrome, and felt like i finally at least had an answer. but when i started joining in on that forum, i realized i was quite different from the others. that diagnosis was recently ruled out. now i am at ground zero, only i have all these negative tests for some of the more obvious issues - thyroid, etc - so it's like the possibilities seem fewer and fewer, but worse and worse. if it's not lyme's, i have NO idea what could be going on. perhaps some crazy african disease that no one has heard of?? based on the cdc's information about the diseases in the country where i lived, i do not have the symptoms of any. i have never had a fever. i have low body temperature (96.5 on average). i have lymph nodes in my neck that swell up and down nearly everyday. for two years. that just doesn't seem right.
well i'm venting. i am just maxed out on frustration right now. perhaps i am not too familiar with lyme's symptoms, but i have read the "master list" of symptoms and feel like i can check nearly every one off. except maybe widespread arthritis, mine was localized to my fingers. but i just don't know how wise it would be for me to go that route, spend all that money, and just once again be told i have a mysterious problem and need to see someone else. i have finally found a wonderful team of docs at stanford, and have only seen one so far. i'm just so tired of going to docs and specialists, i would hate to do this all over again, spend a huge amount of money on tests, traveling two hours to stanford, invasive procedures, etc to later on find out it was lyme's all along.
i grew up in a woodsy area in maryland, where several of my neighbors had lyme's. now i am in california, so my opportunity to find llmds are very very limited. i hvae contacted all the docs within three hours of me, none take insurance. the cheapast visit would be $500. at what point is it worth it??? it's been two years, i have had a million tests, all my doctors agree something is wrong but can't put the puzzle together. do i go through another two years, and if it is lyme's, just let it progress and progress? or do i rule out literally everything else under the sun first?
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