posted
Here's my story. 2yrs ago I had symptoms of lyme (at the time didn't know that's what it was) I saw 4 diff docs and finally got the test and it was positive. I was referred to an infectious disease doctor and was told I did not have lyme the test just showed I was exposed to it, and for two years I walked around thinking I was a nut case. Taking more tylenol and motrin then one body can take. Along with developing bowel, sleep, and memory problems. I began to see phantom images and had so much trouble with my vision the I had to get glasses. In August of this year i had 3 small rashes on my leg and went to the docs and they did another lyme test which was positive but when I asked abt the test 2 yrs ago and if I've had it all along, he said no I probably got bit again. They gave me a 28day course of doxy, some motrin and sent me on my way. My pain, fatigued, anxiety, depression, constipation, and concentration has gotten increasingly worse. I received a message, and plenty of info from someone on this network and they gave me the name and number of their LLMD , I emailed the doctor which is the only way you can request an appointment and never EVER heard anything back. I went to the ER in November and they did a Ct (normal) and a Lumbar puncture (normal, except for the presence of lyme. They sent me on my way with a script for 10days of ceftin and some vicodin and told me to follow up with the infectious disease doc, who happens to be the same one who told me I didn't have it 2 yrs ago. Yesterday I saw my pcp who said they should not have sent me home and that if it's in my spinal fluid then I have lyme meningitis and she wrote a letter for me to go to the ER and get admitted for IV antibiotics. I went home packed a bag got my husband and went to the ER. (O, did I mention in the midst of all this I have lost my health insurance) Anyway I went to the ER last night and the doctor not only treated me like a fool, he acted as if he did not believe me, and treated me like a drug addict. they did no blood work, gave me no antibiotics, no IV fluids, and no help. They did not admit me and said that the lyme in my spinal fluid and in my blood for November is just something that is just lingering but it is not causing my pain and since I was treated with doxy then I don't have it and I should see my pcp, they as you may have already guessed, did not admit me, gave me a script for something called Mobic which is some new anti-inflammatory and sent me on my way. I am at the end of my rope I have about $200 to my name and 2maxed out credit cards from all the bills and scripts. I am suffering and no one believes me and I'm afraid not only of the irreversable damage but of the thoughts I've been having lately. For the past week I've been seriously considering the most fast and effective way to kill myself. I hate life right now, I have no energy, no money, and no strength. I feel guilty every time I look at my husband, who is fantastic by the way, that I can barely work and that we have no money. My sex drive is pretty much non existent and Im afraid he regrets marrying me. we've only been married 2yrs and the majority of that has been spent dealing with this instead if enjoying each other. Sometimes I think abt making my death look like an accident so he can collect the life insurance and at least have some money since my illness has caused our financial ruin, I think I cant look into another doctors face as they give me that "you're full of ****" look I cant sit in another ER for 5hours or more, I can't sit at another computer screen and develop a migraine searching for another doctor. I JUST CANT DO THIS ANYMORE! It's almost Christmas and I dont even have money to do the one thing I want and that's just buy my amazing, supportive, loving husband a present. Last year he was in Afganistan for Christmas and now he is finally home and Im to sick for him to enjoy me and we have no money to enjoy life. I haven't a clue how we are going to pay our rent on the 1st as he is out of work also and on the smallest unemployment Philadelphia can give a person. I hate that I can't do anything for him as he has sacrificied so much for me. He's the one at every appointment, in every ER crying when I'm in pain, scared when I start shaking, praying every night that I get better. He tries so hard to ease my pain and discomfort but I know he feels helpless. I feel like I'm barely a wife there are piles of laundry everywhere I haven't cooked him a meal in a month, I mean I barely have the strength to type this post while I lay in bed. If this is life, my life, I honestly just don't want it anymore.
Posts: 2 | From philadelphia | Registered: Sep 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Breaking post up for easier reading. -------------------------------------------------------------------------------- Newlydiagnosed said: Here's my story.
2yrs ago I had symptoms of lyme (at the time didn't know that's what it was) I saw 4 diff docs and finally got the test and it was positive.
I was referred to an infectious disease doctor and was told I did not have lyme the test just showed I was exposed to it, and for two years I walked around thinking I was a nut case.
Taking more tylenol and motrin then one body can take. Along with developing bowel, sleep, and memory problems.
I began to see phantom images and had so much trouble with my vision the I had to get glasses.
In August of this year i had 3 small rashes on my leg and went to the docs and they did another lyme test which was positive but when I asked abt the test 2 yrs ago and if I've had it all along, he said no I probably got bit again.
They gave me a 28day course of doxy, some motrin and sent me on my way.
My pain, fatigued, anxiety, depression, constipation, and concentration has gotten increasingly worse.
I received a message, and plenty of info from someone on this network and they gave me the name and number of their LLMD , I emailed the doctor which is the only way you can request an appointment and never EVER heard anything back.
I went to the ER in November and they did a Ct (normal) and a Lumbar puncture (normal, except for the presence of lyme.
They sent me on my way with a script for 10days of ceftin and some vicodin and told me to follow up with the infectious disease doc, who happens to be the same one who told me I didn't have it 2 yrs ago.
Yesterday I saw my pcp who said they should not have sent me home and that if it's in my spinal fluid then I have lyme meningitis and she wrote a letter for me to go to the ER and get admitted for IV antibiotics.
I went home packed a bag got my husband and went to the ER. (O, did I mention in the midst of all this I have lost my health insurance)
Anyway I went to the ER last night and the doctor not only treated me like a fool, he acted as if he did not believe me, and treated me like a drug addict.
they did no blood work, gave me no antibiotics, no IV fluids, and no help.
They did not admit me and said that the lyme in my spinal fluid and in my blood for November is just something that is just lingering but it is not causing my pain and since I was treated with doxy then I don't have it and I should see my pcp, they as you may have already guessed, did not admit me, gave me a script for something called Mobic which is some new anti-inflammatory and sent me on my way.
I am at the end of my rope I have about $200 to my name and 2maxed out credit cards from all the bills and scripts.
I am suffering and no one believes me and I'm afraid not only of the irreversable damage but of the thoughts I've been having lately. For the past week I've been seriously considering the most fast and effective way to kill myself.
I hate life right now, I have no energy, no money, and no strength. I feel guilty every time I look at my husband, who is fantastic by the way, that I can barely work and that we have no money.
My sex drive is pretty much non existent and Im afraid he regrets marrying me. we've only been married 2yrs and the majority of that has been spent dealing with this instead if enjoying each other.
Sometimes I think abt making my death look like an accident so he can collect the life insurance and at least have some money since my illness has caused our financial ruin, I think I cant look into another doctors face as they give me that "you're full of ****" look I cant sit in another ER for 5hours or more, I can't sit at another computer screen and develop a migraine searching for another doctor.
I JUST CANT DO THIS ANYMORE! It's almost Christmas and I dont even have money to do the one thing I want and that's just buy my amazing, supportive, loving husband a present.
Last year he was in Afganistan for Christmas and now he is finally home and Im to sick for him to enjoy me and we have no money to enjoy life.
I haven't a clue how we are going to pay our rent on the 1st as he is out of work also and on the smallest unemployment Philadelphia can give a person.
I hate that I can't do anything for him as he has sacrificied so much for me. He's the one at every appointment, in every ER crying when I'm in pain, scared when I start shaking, praying every night that I get better.
He tries so hard to ease my pain and discomfort but I know he feels helpless. I feel like I'm barely a wife there are piles of laundry everywhere I haven't cooked him a meal in a month, I mean I barely have the strength to type this post while I lay in bed.
If this is life, my life, I honestly just don't want it anymore.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
First of all, choose your LIFE. It is worth living. You have an amazing husband who wants to help you through this. The two of you can figure out how to get your needs met. That is the number one priority.
Secondly, STOP going to clueless, rude, arrogant doctors. Just stop. They have nothing to offer you but belittling attitudes and bills for their services. Take a deep breath, and let them go.
Our LLMDs are swamped. Beyond swamped. Their practices are full of the sickest, most desperate patients. Yes, things fall through the cracks. They are not perfect.
They also must screen patients on very little info. These docs treat us with protocols that are outside of standards of care. They get investigated. They get sued. With good reason, they are very careful about accepting new patients.
You will continue to get worse until you begin proper treatment. With an LLMD. Pick several. Make appts. If they don't call back, keep calling until you get those appts. Also get on waiting lists for cancellations.
If you can find a sympathetic doc who will start you on Doxy or something in the meantime, that's a great idea. Also use this pre-LLMD appt time to learn about Lyme politics and Lyme treatment.
Watch the documentary Under Our Skin.
Read (as best you can) the book Cure Unknown, Inside the Lyme Epidemic, by Pamela Weintraub.
You must get out of the mindset of Doctors are Authorities and Patients Must Do What They Say. Bull$#!t.
You are the authority on your life and health. You know you are not crazy or a drug addict. See? You already know more than most doctors. You know you have Lyme. Now you know more than almost all doctors.
After you get an LLMD appt, plan your finances. People with Lyme make radical life changes to afford treatment. Don't worry about what people think or say. If you had cancer, you would be expected to fight for your life. Fight for your life with Lyme.
Consider bankruptcy. You need your money way more than banks do. Consider moving in with parents or other family. Consider ALL options, no matter how awful they sound. You will get back on your feet, but you must recover first.
There is a weird paradox to fully accepting this illness and what is required to treat it. What feels like giving up is actually taking responsibility. What feels like misbehaving is actually empowerment. By letting go of what you wish was happening (humane and helpful doctors), YOU will create what you need.
It still totally sucks, but you'll learn to give the big heave-ho to the idiots in your life.
For Christmas, give both you and your husband the gift of YOU. Release the guilt. Release the scrambling. Release any anger or denial you are carrying. (You still get to be angry. Just let it go for a day to do some really clear thinking.)
Cry about this craptastic situation, then strategize. Together. Be all It's Us Against the Stupid World and Look Out Stupid World! Here We Come!
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Good advice from BoxerMom. I have been where you are physically and financially. There is a way to deal with this and very inexpensively.
One is called the salt/c protocol and the other are antiparasitic herbs. Both, VERY inexpensive and saved my life when I was deathly ill.
Go to the lymestrategies website. These are the peopl doing the salt/c protocol, which is sea salt and vitamin C powder in equal doses. Check out lymestrategies for more info on salt/c.
I buy Real Salt at vitacost and also vitamin C powder with bioflavinoids by American Health. The sea salt kills the bb and parasites. I also get Parastroy which cost about $11.00 a kit.
If you do salt/c make sure you start with a small dose like 1/4 tsp each in a glass of water and ramp up from there. Hope this helps. Hang in there, you can get your life back.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
P. S. Table salt is not an option just in case you were thinking of doing something you have on hand. It is processed and will lay in your tissues. VERY bad idea.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Sounds like you qualify for medicaid. Have you looked into this?
Start contacting support groups in your state for help. Click on support groups line in green menu box left side of this page and go to PA. They will have heard it all and will have meetings where you can go and hear how other people have coped with this lousy situation.
Posts: 2888 | From USA | Registered: Mar 2004
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Hang in there! Don't give up, you have a great support group here. We all know what you are going through, we've been there ourselves. You've gotten some good encouragement here. Come on, Lax mom, you can do this!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
LaxMom was just reposting, not her story.
Posts: 2888 | From USA | Registered: Mar 2004
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Amen to EVERYTHING Boxermom said. KEEP in touch with your support group here. Very important. We all know the crap stories all too well and we UNDERSTAND.. REALLY We DO !!
so don't feel guilty either about sharing unpleasantries either. We need each other.
This IS like a cancer. Choose life. Nothing else matters.
"Suicide is a very PERMANENT solution to a very TEMPORARY problem. " I don't remember where I read that.
It doesn't feel like a temporary problem, but cancer patients would say the same thing.
We will get through this and while we do, we fight for better quality of life along the way.
HUGs
KW
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Wow - I FEEL for you!
Did you know that Lyme victims are among the groups likely to commit suicide? Reason: Most doctors are IDIOTS when it comes to Lyme - and people suffer and suffer, and get NO HELP! Or WORSE - they are told that THEY are crazy! (When in fact, their Doctors are!)
You CAN get Help!
My Mom went from neurologist to neurologist who NEVER TESTED HER FOR LYME, and just prescribed anti-depressants or "counseling." This only p***ed her off! Finally, a doc I found for her did a spinal tap and found Lyme in her spinal fluid!
YOU ARE ACTUALLY LUCKY to have gotten a POSTIVE spinal tap - because only about 13% of folks who ARE positive, will GET a positive tap result!
This is UNEQUIVOCAL PROOF that you have neurological lyme involvement - which will screw up your memory, your vision, and even your will to live! But many people here would KILL to get a POSITIVE on ANY Lyme test - because now you CAN find a doc, who will be willing to treat your Lyme infection as aggressively as it should be treated!
ONE THING for which you can feel VERY GRATEFUL - YOUR PCP sounds like ONE SMART COOKIE! (Most folks here would ENVY YOU to have a GP as savvy about Lyme as he/she seems to be!)
Why not ask your PCP to put you on a prescription of Tinidazole, until you can GET TO a REAL LLMD?
Tinidazole is said to be more effective than doxycycline, as it treats various FORMS of Lyme, and Lyme will try to "morph" into another more protected form (cysts, bio-film) as it attempts to flee the effects of doxycycline!
May 2011 study (Tinidazole more effective than Doxycycline)
Also - find out about that anti-inflammatory you are taking - and if it is ANY FORM OF STEROID - get OFF of it as quickly as you can!
There are lots of NATURAL anti-inflammatory herbals, like Curcumin/Tumeric; while Steroids will only make it more difficult to get rid of the Lyme! STEROIDS are therefore contraindicated for Lyme patients!
If I were you I would start taking Fish Oil and/or pure coconut oil - to help your brain defend against the damage of a neurological infection. Neurons are comprised of 60% "essential fatty acids" so if you "feed your brain" you might help to mitigate any damage from the infection, until you get it under control.
Your libido is low because your body is struggling to defend itself from this infection. This is also "nature's way" of telling you that this is NOT a good time to conceive! I'm sure you can find plenty of ways to show your husband that you care for him, until you feel better. But be aware that Lyme can be passed from mother to child, and you will likely want to take responsibility to avoid that just now.
I agree with everything that Boxer Mom said, and I think that glm111 gave you good advice too. Many folks get other parasitic infections along with the Lyme, and if you can mount a natural attack against these other parasites, you may find that you are feeling somewhat better on the salt-C, before you even see a "Lyme Literate" MD.
You have come to the right place~ IMHO, after researching Alzheimers, MS and Lyme disease for my Mom for 5+ years, I would say that this website has some of the most experienced people, who have a LOT to share with you, about how to get well again! And share they do!
So don't give up the ship! You may feel LOUSY now, but there is HOPE beaming brightly over your horizon!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
P.S. I forgot to mention: At the top of the "medical questions" thread is a link for the Suicide Hotline.
You are not alone. You can beat this. If these feelings return again, please give these experts a call.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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