posted
I have been dealing with Lyme for nearly 13 years now, though during that time the only treatment I ever received was 14 days of doxycycline.
Many many times being told it was not Lyme (including by the doc that prescribed the doxycycline).
In 1995 I was living for the summer in a rural town in western PA. I noticed a red round rash on my arm that seemed quite large (about 2 inches across).
My relatives thought it was nothing more than an infected spider or mosquito bite; it didn't bother me much so I used OTC cortisone cream on it.
It went away, but during that time I also noticed a few other red round rashes on my legs, and I felt sick, like I had the flu. But it all went away.
Over the next year I developed some serious headaches, neck and back aches, and there were days that I couldn't get out of bed.
This was not me --- I was known for working and being active around the clock in many different pursuits. Now there were times that I cared less.
I was treated for all of these symptoms with pain killers, physical therapy, and temporary leaves from my job.
In 1998 as I started one of my work days, I suddenly had double vision, and couldn't get my eyes to straighten out.
It cleared up in about 5 minutes, but it frightened me. Round red rashes were appearing on my legs again.
By 2000, I had joint pain and swelling, difficulty swallowing, sudden bouts of painful diarrhea, fatigue beyond fatigue, "panic attacks", and periods where I totally forgot things.
By this time I had been diagnosed with: migraines, arthritis (osteo and rheumatoid), chronic fatigue, muscle sprains and strains,
possible lupus, possible MS, Crohns disease, generalized anxiety disorder, seizure disorder, depression, drug addiction, drug reactions,
degenerative disc disease, and finally that I "liked attention that I got from being sick".
On the basis of the pain, and my description of round rashes (I had pictures of one on my thigh that was more than 4 inches across) my family doc ordered a Lyme test.
The next week he called me AT WORK to tell me it was positive. My response was "thank God! at least now I know what it is!"
He had given me the 14 day doxy, and told me to finish it and return in 2 weeks for a follow up.
When I did, he took my blood again for ANOTHER Lyme test, and when that result came back, he now told me that I didn't have Lyme, it was a mistake, I never had it.
He said that I didn't need any more treatment and that I should be okay; with that he left the examining room.
I was thoroughly confused. I had come to this visit feeling hopeful that knowing what was wrong something now would surely be done.
I had known this doctor since I was 16; it was the WAY he told me this that didn't seem like him.
He was the doc that always listened, took time, did whatever he had to for his patients; this time he was so abrupt and had literally just walked away from me.
I remember standing in the hallway open mouthed, holding onto the wall, not knowing what just happened here, and the assistant saying "are you alright? do you need to talk to him (the doc)?"
I said "When do I come back?" and my doctor turned around in the hall and said, "no, you don't need to".
Ironically, my insurance carrier refused to pay for the second Lyme test since I had just had the original (positive) one done a few weeks before! I got stuck with the bill!
My doctor retired the next year.
The last conversation we had was about how much it cost to have long-term IV antibiotic therapy and how insurance companies wouldn't cover it,
and how much pressure there was on doctors when they diagnosed Lyme.
At that point I knew what I had, and could not believe there was a disease out there that doctors would refuse to acknowledge or treat
properly, or insurance companies would deny, or medical organizations would penalize doctors for diagnosing!
The doctor that I was turned over to does not believe I have Lyme, but instead has told me that I have everything from rheumatoid arthritis to
depressive personality to a possible brain tumor and given me everything from oxycontin to Paxil, and offered me methotrexate and prednisone.
There were times I was so sick I prayed not to wake up the next morning --- and as I heard from another Lyme sufferer, it was not a request, it was a DEMAND.
I started getting pretty sick again late last year with generalized pain, the headaches, fatigue, confusion and forgetting, joint swelling, etc.
I continued to work as I could. In February of this year, I was forced to take a temporary disability from my job.
My employer replaced me and terminated me within the month citing that it was too much of a hardship on him to find a temp (my state of NJ has "at will" employment).
I lost my health insurance when I couldn't afford COBRA. I no longer have faith in my doctor or much of anything in the medical profession.
I have fallen behind on so many bills I have no idea what to do. My car was reposessed in April; if it hadn't been for some kind friends I wouldn't have gotten it back.
I owe a month in back rent. At this point, probably from the stress of all of this on top of being sick,
the day finally came (today) when I could not get out of bed.
I am at bottom, square one. I have no idea where to even start at this point. Any comments, suggestions, etc are more than welcome.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi MissMari,
Unfortunately, it appears that you have undertreated Lyme Disease and possibly co-infections.
You need to see a LLMD right away to begin proper treatment....how are you going to do that w/o monetary resources?
Sugestions: Any family that can help you out? What about a church? sometimes chuches have programs for medical care. Some LLMDS will work with you, maybe you could work out a payment plan?
Next step: There are medication programs that will help you with perscriptions, once you get on a treatment protocol, check into this.
You must be feeling very overwhelmed and you're right, stress does not help this disease. Try to focus on geting treatment and let the pieces fall where they may.
W/O treatment, I am afraid that none of your debts or other problems will end up going away because you will probably become too ill to even think about resolving them.
There is hope, focus on you first, try not to think about those other things....
God Bless you, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
".... and how much pressure there was on doctors when they diagnosed Lyme. At that point I knew what I had, and could not believe there was a disease out there that doctors would refuse to acknowledge or treat properly, or insurance companies would deny, or medical organizations would penalize doctors for diagnosing!" .......................
Therein lies the whole situation Lyme patients face! Sad, but true!
If possible, stay away from that rheumie!! If I had not moved, I would still be seeing my rheumie and being pumped full of steroids and methotrexate.
Not a good thing when you OBVIOUSLY have Lyme disease! You were majorly undertreated!!!
You really need to find an LLMD in your area. The meds you could get from Costco or Walmart and maybe not cost you an arm and a leg.
The LLMD cost will be high. I'll send you some info by private message.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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It's been awhile since I have been to this site, but it's also taken me this long to see that it is where I need to be.
I THANK YOU for the physicians lists. At least I have an idea of whom to attempt to turn to after
all these years and all the docs that brought me to this point....
At least I have begun down the right path.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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posted
You're welcome, Mari!! Glad you came back here!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
While it will be a huge amount of work, I suggest that you begin working on an application for Social Security Disability while you still qualify for it.
It is based on working a certain amount of quarters within a certain amount of years previous to application.
I also suggest you check around with local area support groups for the name of a good SSDI attorney.
They get paid from your benefits when you win. They also know the ins and outs of what it takes to win it.
You will also want to be sure this person is Lyme Literate. For more info on SSDI go to www.ssa.gov.
Welcome back to Lymenet. You are in the right place.
I also invite you to join us on our Lyme chat one night. We start around 8 PM and go until????
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