how do you guys afford this?!

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.

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

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.

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.

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.

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

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

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! :-(

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.

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?

http://www.emedicinehealth.com/west_nile_virus/page3_em.htm

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:

www.hansacenter.com

Hope this helps,

Denise

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?