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Posted 11/8/2008 2:00 AM (GMT 0)
Hi everybody here. I'm a bit of a mess and tend to ramble a lot lately and have to take breaks when typing, but I really need some help/advice. My story is very long, and I can't get into a lot of it, but I've been miss diagnosed for 8 years now with different mental conditions that 'oddly' would come and go and that medication did nothing for but make things worse. Because of that though, I'm seen as crazy and I guess at times could seem like it.... but I've always known I wasn't.

Doctors now won't listen to me because I'm 'crazy' and nothing shows on normal tests, after a while just pretty much just tell me to leave them alone. It's a somewhat common story, but now I am going downhill fast and not sure what I can do.

I have Indiana medicaid disability, but it's proving to be almost worthless with this. I have zero money or funds, I haven't been able to work much the last 3 years and have been in poverty for a while and everybody blames me for it of being lazy. I can't just up and go to a LLMD as I have no way to get there, don't even have a car, and I don't know if I could get the medicaid to pay for it.

I saw a.... forget the abbreviation... a holistic doctor a few days ago for a free screening, and they did a dark field live blood analysis, and it was full of bacteria and a lot of my red blood cells either had holes in them or crystals in the middle, and what looked like the groupings of spirochete, kind of like in a mass, and ones swimming around. He was extremely concerned, but I'm pretty sure they are limited as what they can do.

I've lost all my friends as I just come off as too odd to most. I just lay in bed most days now as I'm too ill to really move around much. I've lost 55 pounds, my hair started falling out a month ago, and I'm not digesting foods much, becoming allergic to anything I eat it seems, started the SCD diet, then to GAPS, cut out everything that could be bad.... nothing has helped. Been having the MS type symptoms the last 2 months, and can barely walk a lot of days now with muscle twitches or convulsions. My doctors though think I'm faking, and nobody will treat me.

I have no idea what to do now. I can tell my body is falling apart, all the signs are there. I want to get through this, but I don't have any support, and I am too sick to do a lot on my own anymore.

This took an hour and a half to type.... x.x The spelling is only right as the spell check is on, ha. I'm sorry if I sound like I'm complaining or whining.
Posted 11/8/2008 2:44 AM (GMT 0)

Hi lonelylymie, welcome to the board!  I am sorry you have been sick for so long and unable to get help.  Often when doctors cannot or will not find out what is wrong, they blame the patient.  You are not crazy, dealing with this disease is crazy.  We understand how you feel.

Below is a Lyme symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.

Do you have any family who could help you?  I found the following Lyme support group listed for IN:

Lyme Disease Support Group of Indiana and Pennsylvania

Crissy Cardone or Lori Leary

260-459-2421 (ANYTIME)

[email protected]

This may be a good source for information.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD.  

Hang in there okay?  This is a great place for support.

Posted 11/8/2008 5:24 AM (GMT 0)
I've been trying to do some research on Lyme the last month, and have somewhat like 54 of those symptoms. I've been trying to do as much as I can to get some help, but I haven't been able to convince anybody I am as sick as I am. My mind has been getting worse though and am having trouble thinking straight some days now. I think my parents finally have an idea that I am actually telling the truth after me seeing the.. guy.

I'm trying to find a doctor that will treat me though before I can't do anything myself anymore. I'm going to email that Indiana support group, hopefully they still are there.
Posted 11/8/2008 11:22 PM (GMT 0)
darn, I'm going down hill so fast now... getting more and mroe scared. Can't really walk today. I didn't think I would go downhill this fast. I had watched under our skin a week or so ago.. Trying to walk I look like the younger women, that's a large part of it, that gets married.

I talked with my mom for a bit today, it was a good talk and she was able to see me on a bad day. She's finally getting it, and I'm pretty sure they are going to move me in with them soon. My dad is the problem though....

I think I'll be getting help soon, I just wish money wasn't such a big issue. I already had to file bankruptcy from medical bills..... they were starting to sue me.
Posted 11/9/2008 4:29 PM (GMT 0)
Lonely lymie,

Can you get your parents to watch the movie Under Our Skin?? Maybe that would help convince your dad.

You really need thier help!!

Take care!
Dar
Posted 11/10/2008 8:41 PM (GMT 0)
Great, I'm thinking the lyme support group for IN doesn't exist anymore.  The email bounced, and the number is disconnected.

I crashed saturday night...  Couldn't even move really.  My parents were going to take me to the hospital but I knew the hospital would think I overdosed again, and I couldn't talk very well to explain what was going on, and I knew from what I have learned, they wouldn't believe me at the hospital anyway and probably pump my stomach and give me a bunch of drugs that would make things worse.

My parents though are finally taking heed, but I think my dad is losing his job today (automotive factory) so I'm pretty well disabled now and my family can't really help much.  They are moving me in with them, but my father is still...  Trying to get them to watch under our skin, but my dad thinks I mimic everything I see.

I'm pretty sure my whole family is infected is the real problem, so try getting help from other people ill that won't listen to you because they are ill.  Lots of fun.  Just got into a shouting match about it, about me worrying too much and wanting to do too many things, when I'm just trying to get to an actual doctor that can get me on anti-biotics soon, but apparently I'm driving them insane trying to get something done.

I can't do this.

Posted 11/11/2008 2:07 AM (GMT 0)
You could try taking Samento, or Cat's claw tincture if you cannot afford the Samento, until you can access medical help. 15 drops twice a day.

There is also a salt and vitamin C treatment that's cheap, some people claim to have been cured by it.
Posted 11/11/2008 2:42 PM (GMT 0)
Sorry to hear about your condition. My wife is much more mobile that you but not coherent enough to write an email.

The salt regimen is: 3,000 mg 3 times a day of vitamin C and 1 tsp. of Sea salt 3 times a day too. The herbs to go along with that are Spiro kete-now known as SPK Formula and Foon Goos #2-now is Candida Formula #2 from Hanna's Herb Shop.

Start slow with the Vitamin C. You have to drink about 12 glasses of water during the day because of the salt. Good Luck
Posted 11/24/2008 1:32 AM (GMT 0)
lonely,
I am so sorry darlin! It sounds like your having a terrible time. If it makes you feel any better. My Dr. did not believe me for 4 years either. Nor did most people understand. So screw them! First you....are you on anything at all for depression? That is what you need to attack first. Depression will make everything seem so much worse and will make you just want to give in to this lyme. And you are way to young for that! Your dad...I am going through the same thing with my x...and it just makes me blue to go on and on and get no where. So...it is hard to start screaming when you are drowning...but try to save your strength for yourself. The meds above me look like a smart way to go. It is very close to what I am taking. Send your mom to the health food store for collidal silver. You can get it on line from meso silver, you can get a gallon for 180.00. It kills the stuff. It is cheap and will help you...along with the other stuff mentioned above.
I take cymbalta for depression and pain and energy. it is the wonder drug for me. it should get you out of bed and help you with the blues.
and try the colidal silver. he has helped me so much i cannot tell you. and they were trying to put me in the hospital just 8 weeks ago.
You are going to make it. Have faith. Keep hope.
Marie
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