posted
A 12yr old boy is treated for ringworm. at the age of 35 he is totally disabled with, Ankylosing spondylitis, osteoarthritis, spinal stenosis, Gout, Intractable Pain. Depression, Sometimes Bipolor, anxiety & panic disorders. After treated for ringworm at age 12. (I have had herpes simplex 1 since I was 4yrs old, canker soars in mouth) Here are some of my symptons as best I can remember in the correct order. *aching knees. *sitting in class I was fine than, neck started hurting and in 10 mins. it got so bad I was only able to set my head on my desk and couldn't movemy neck. pain was severe and went away with-in 30 mins.* I could not go through a school day w/o falling asleep sometimes several times, *chronic fatigue and tiredness. (that went on for about 10yrs.) *restless legs, kicking almost nightly. *depression to *bi-polor, to I feel O.K. I don't have those. *The cycles were at times extreem. *ADD, *emotional, *social, problems more comfortable *isolating. I had 1 friend. Sometimes *overly sensitive, *easy to cry. *Scared, *took everything personally, *shy, *intermittent mild pain starting at 12yrs old and *pain and discomfort progressively got worse. (most symptons were intermittent.) *AM. nausia. *Always wanted sympathy.(no duh huh, actually this one is for help not sympathy), * (Bells Palsey) droopy numb face. *1 under eyelid always spasm. *rare but vertigo usually in elevator. *mood disorder, *trouble sleeping. ***There are a lot more. At about *20yrs old severe problems staying interested in things. obsessively engaged in things I liked till They got boring or I didn't like them anymore, from job, to job to job, etc. overly sensitive and would quit jobs many jobs, I was paranoid of people, bosses. I became a great actor playing the role of perfect employee, boyfriend etc., I could fool anyone to think I was OK, but I never was. All or Nothing attitude. *Age 30, knee surgery due to uric acid crystals, Dr. discovered my ACL was "shredded" I never injured that knee. Heart Attack. And back to now, 41yrs old on medicare, ssdi, with preveously listed medical issues and than some. I Feel like my entire life was stolen from me and now with a degenerating spine, fractures in the T9,10,11 L5, S1 and I suffer from Chronic INTRACTIBLE pain. In 5 years my best pain day has been a 4 out of 10 on the pain scale. I am now so broken inside I pray for Death. I see about 2 to 3 doctors every month and have been for 5 years. I just can't do this anymore. I got no more fight in me and I just ready to move on...... I don't want to be alone right now. please post if u can ty and good bye
Posts: 18 | From by a computer | Registered: Dec 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
EDITING TO ADD-
Number to Suicide Prevention Hotline. Please use it.
A 12yr old boy is treated for ringworm. at the age of 35 he is totally disabled with, Ankylosing spondylitis, osteoarthritis, spinal stenosis, Gout, Intractable Pain. Depression,
Sometimes Bipolor, anxiety & panic disorders. After treated for ringworm at age 12. (I have had herpes simplex 1 since I was 4yrs old, canker soars in mouth)
Here are some of my symptons as best I can remember in the correct order.
*aching knees. *sitting in class I was fine than, neck started hurting and in 10 mins. it got so bad I was only able to set my head on my desk and couldn't movemy neck. pain was severe and went away with-in 30 mins.*
I could not go through a school day w/o falling asleep sometimes several times, *chronic fatigue and tiredness. (that went on for about 10yrs.) *restless legs, kicking almost nightly. *depression to *bi-polor, to I feel O.K. I don't have those.
*The cycles were at times extreem. *ADD, *emotional, *social, problems more comfortable *isolating. I had 1 friend.
Sometimes *overly sensitive, *easy to cry. *Scared, *took everything personally, *shy, *intermittent mild pain starting at 12yrs old and *pain and discomfort progressively got worse. (most symptons were intermittent.) *AM. nausia.
*Always wanted sympathy.(no duh huh, actually this one is for help not sympathy),
* (Bells Palsey) droopy numb face. *1 under eyelid always spasm. *rare but vertigo usually in elevator. *mood disorder, *trouble sleeping.
***There are a lot more. At about *20yrs old severe problems staying interested in things.
obsessively engaged in things I liked till They got boring or I didn't like them anymore, from job, to job to job, etc.
overly sensitive and would quit jobs many jobs, I was paranoid of people, bosses. I became a great actor playing the role of perfect employee, boyfriend etc.,
I could fool anyone to think I was OK, but I never was. All or Nothing attitude.
*Age 30, knee surgery due to uric acid crystals, Dr. discovered my ACL was "shredded" I never injured that knee. Heart Attack.
And back to now, 41yrs old on medicare, ssdi, with preveously listed medical issues and than some.
I Feel like my entire life was stolen from me and now with a degenerating spine, fractures in the T9,10,11 L5, S1 and I suffer from Chronic INTRACTIBLE pain.
In 5 years my best pain day has been a 4 out of 10 on the pain scale. I am now so broken inside I pray for Death.
I see about 2 to 3 doctors every month and have been for 5 years. I just can't do this anymore. I got no more fight in me and I just ready to move on......
I don't want to be alone right now. please post if u can ty and good bye
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey no...
You are not alone. Many here have been miserable at some point in time and have felt hopeless. It can get better.
It is good that you can share your feelings and ask for help. I put a link to your post in another section and hopefully others will be along today or tomorrow to talk to you.
posted
I have posted this on another lyme support site. I have a wife who is in a word, Cruel. She has my 12yr old son and 8yr old daughter afraid of me. She treats me like I am completely crazy. I have converted my basement into my own apartment and my family lives upstairs and avoid me. I was able to deal with this for my kids but unfortunatly my mind and body have now deteriorated to a point where my kids are now better off without me. so its time to go sometime today.
Posts: 18 | From by a computer | Registered: Dec 2009
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julielynne4
Unregistered
posted
I am so sorry for you life long suffering. I am 37 years old and my illness/bizarre symptoms began when I was 12 as well. Lived in Connecticut at the time, not far from Lyme.
I just finally began treatment for Lyme and coinfections last year. Some days I am scared and some are hopeful.
I hope you are in proper treatment - I might have missed that part in your post. Have you been tested for Lyme and are you seeing a Lyme Literate Medical Doctor?
There IS hope. Please ask questions and people can steer you in the right direction.
So many of the symptoms you listed are things I have experienced on and off for 25 years. I feel your pain to some degree. It is horribly depressing to try to convince the world that you are okay when your mind is not and you think you have lost your mind.
We are here to help, and many here can relate and offer words of comfort and hope. J
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
So sorry you are suffering. I can empathize for i have been there.
Have you been diagnosed or treated by an LLMD for Lyme? Have you tried any alternatives? How can we help you?
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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is the information for the National Suicide Hotline. Please use it.
posted
I also started having many of your problems at age 12-13. I'm 59 now, was only tested for Lyme 2 yrs ago, now I still have hope for a better life.
Probably every one of us have contemp;ated suicide, yes that would be the easiest way out. But I could never do that to the ones I am leaving behind. If God just wanted to take me now, well that would be a different story.
Posts: 847 | From upstateNY | Registered: Dec 2007
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Please call the number they gave you!!!
Here is the information for the National Suicide Hotline. Please use it.
posted
I'm sure most of us have felt just like you are feeling now. Suicide is not the answer. You have kids so how do you think that would make them feel? They love you no matter what.
There is hope for you. Lots of us have been sick for many years and have gotten better. You can too. You just cannot give up. I've wanted to many times myself. I have a family and can't do that to them.
You just need to hang in there. Things may look different in the morning. Usually they do so don't give up. You can come here when you need support. This is a great group of people.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
I am still here. I am just going to listen, There is no way I can deal with a couple cops showing up at my house, so I am fine..........
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
Im scared
Posts: 18 | From by a computer | Registered: Dec 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Welcome to lymenet. I'm glad you found us! It sure sounds like you have lyme to me.
Please go to "seeking a doctor" for names of lyme literate doctors. You can feel a heck of a lot better with proper treatment. I do!
If you are feeling suicidal please call the hot line. Untreated or undertreated lyme can make you feel that way.
You are not alone. We understand and are here to help guide you.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
We are praying for you. Hang on. We all understand here and really care. Keep talking to us and do call the hotline if needed. God Bless you, Sk8ter
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
You have been completely failed by the medical system. This is not your fault and you have had too much for one person to deal with alone. So, please make an effort soon to contact a support group in your area, explain the situation and see what advice they give on finding a doctor. And go to a meeting if there is group anywhere near you. We are here too for support.
Click on support groups line in green menu box left side of this page.
Then go to your state and find a group or groups to contact. Sometimes it takes contacts to several groups to get an answer.
After that, post in seeking a doctor forum, if you haven't already.
This is sorry situation and not your fault. You needed help and didn't get it. But now you can try again, just one small step to see if lyme could have caused your problems. Others have been neglected for a long time because they didn't know where to turn.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Here is whats terrifying to me, I feel better and my thoughts are clearer. My moods are severly swinging that I honestly can't tell the difference between whats rational and whats not. I feel like my brain is permanatly damaged, so I am stuck in a panic attack making eveything worse, but even with meds I can't get out of this.
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
hey, please dont do it. I attempted suicide, almost died, but am still here thank god, playing with my kids. I know the feeling of panic, and the feeling of being better off dead. Im so thnkful that I didn't die. You are toxic, and need to read about how to detox to lower your symptoms. Just take one day at time. we are here for you!
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
So sorry your feeling this way.. Please talk to someone... at this point.. The hotline . A friend... someone here? PM me if you like..
I know what its like to have no less than 4 on the pain scale for 10 years now... It gets to you big time..
I was wondering if you could list your medications here?
There are many here expeienced with a wide variety of meds for many reasons that might be able to help with some hints about how the meds are affecting you..
But.. Doctors.. Have you talked to your doctors about all this? About really evaluating the whole picture. How your feeling? Your medications?
There has been many times when meds contradict one another or a med even such as an abx or treatment for babesia can cause severe depression and suicidal thoughts and worse.. Such as Mepron.
Reach out.. Please and try to get a better idea of what might be affecting you and why.. and sometimes another view point can give answers you never thought of and can make a HUGE difference.
Hang in there.. and keep talking to people. Do not isolate yourself.. That would be the worst thing you can do..
Call the Hotline... Call anyone at all you feel you can talk to...
Blessings.. Lots of great support and suggestions here already...
WE all Care about YOU!
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Hi - listen to Brandimc - she felt similar to you, and pulled through, and we're very proud of her here! You both have kids, too.
It's terrible that you weren't recognized as having Lyme a long time ago. That lack of recognition is very common, and that's why we're all here doing this work now, to let people know and to help.
I think you are an amazingly strong person, to have already survived going through what you've described above. Now for the next stage, which is to start treating effectively.
You say you're going to 2 or 3 doctors - are any of them Lyme-treating doctors, as in LLMDs - Lyme-literate medical doctors? Do any of them have you on meds specifically for Lyme? And any other supplements?
There are ways to treat and Lyme-treating doctors are experienced at finding the treatments that will work with each person.
Plus, as someone mentioned above, there are Lyme support groups and you could get some support and assistance from going to one near you since everyone's dealing with this illness in one form or another. Many have the experience to help guide others through this ordeal.
Bone fractures? Wonder if this means a need to remineralize? Anyone know?
If you have disc problems, there's a machine called the Vivatek, that some chiropractors have, that people lie on and it allows for healing of the discs.
It might feel like your brain is permanently damaged, but it isn't, not with proper treatment to reduce the brain inflammation.
Re pain - I'm a great believer in finding any way to get the pain level down, even if it's just a notch at a time.
A couple ideas, besides painkiller medication:
People, and injured animals, like race horses, are being treated with magnet machines in the 500-700 gauss range. The magnet machines are called PEMF machines - stands for pulsed electromagnetic frequency machines.
Our exposure to their continuous magnetic clicking reboots the body's ability to heal, even bones. One PEMF site says the piezo electric effect activates bone growth.
My pain level always dropped after being next to one for awhile. You could check around to see if any chiropractor or ND or person like that might have one in your area.
LED lights - light-emitting diodes - it's red light frequency, and it reduces pain in the areas where it's held over.
Norman Cousins successfully treated his ankylosing spondylitis with Vitamin C and watching Marx Brothers movies - both Vit C and his laughing boosted his immune system's ability to fight back.
You're probably not in a laughing state of mind, but I wanted to give you an example of someone who made a difference with what was considered to be an intractable situation. He wrote a book about it, too.
We're all different - the secret is to find things that are going to make a difference for us.
Re your family - it is common for people not to understand. There is a new documentary out, called Under Our Skin. It can be ordered from www.openeyepictures.com.
It follows the lives of several Lyme patients and the politics surrounding this disease, which is why we don't get recognized and treated early on. The people in the film are all doing better after treatment.
It would be a really good idea for your entire family to watch this film. Then they would understand you better, as well as get educated themselves so as to avoid getting it.
So you should not give up. You've done pretty well, so far, I think, to make it this far. And you probably had to fight to get disability too. Now it's time to start doing things that are going to improve the condition you have.
Please stay here and talk with us. Thank you - Robin
PS I didn't get as bad as what you're describing, but I went 25 years in the dark before someone else clued me in. I immediately started to treat and felt better.
[ 12-06-2009, 12:32 AM: Message edited by: Robin123 ]
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Dear nomorepainn, PLEASE PLEASE PLEASE do not give up. It looks like you are in a bad place right now and I am so sorry for you.
No one truly knows someone elses pain but as you can see by how quickly others have replied to your post you ARE NOT alone!
You said that you pray for death..that tells me you have atleast some type of faith or belief.
I must tell you that I know for sure if it wasn't for my faith in Christ I would not be able to make it through this disease.
I to, have been sick for years (just turned 50 at the end of Nov), although nothing as extreme as what you've been going through. I didn't get diag. with Lyme and co-infections until April of this year.
I am seeing a LLMD but still am bad many days.
I promise you if it wasn't for my faith I couldn't continue to fight this battle.
I grew up believing in God and attending church but never really "got it" until a couple of years ago. I didn't even really know anything about the Bible.
I have since found a church and attend Bible studies when I'm not too sick--I ended up going through a terrible time in my life which is how I found my way.
He doesn't promise it will be easy but he does promise not to forsake us.
I am not trying to come across as a "holy roller" etc and I know some people are turned off by religion but try to remember Christ is Christ NOT a "religion".
Please talk to God, I PROMISE he will listen. Also please PM me if you like or anyone else on this site.
I am also new to this site but I have found everyone here to be a blessing and willing to help each other--somewhat of an extended family.
I will say a prayer for you tonight.. Please stay in touch.
God bless, Karen
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
Please call that hotline!! They can help you more than we can...but we are so willing to do what we can for you!!
Sure sounds like you have Lyme.. is that what you think too???
Go to Seeking a Doctor.. and let someone help you find a dr who can REALLY help you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Don't give up. You will not know what you missed.
You can get better!!! You can Have a Life.
Bones can heal, Joints can heal,
Muscles can heal, Brains can heal,
and Hearts can heal.
Many of us have been to hell for this illness, if
you were not supposed to be here you would be gone
already. Stay strong- fight this illness. We need
another blessed one who's life has been saved
with treatment to help the others that come
behind you. You can be that person. There are
many here but most have gotten well and go on
about their lives. You can also be one of them if
you choose. Hang on and let us help.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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You story is heartbreaking and tragic. I am so sorry you are in this situation.
BUT, you have children and even if they seem to be scared, they need you. If you die you will traumatize them forever.
Sorry, when you choose to have children, you gave up your right to freely kill yourself. You are obliged to keep living FOR THEM. You need to think of THEM!
You can get better. It may take a lot.
REMEMBER you can't have a miracle if you're dead! (well, I guess you can, however it has to be a much bigger one).
Use the hotline.
Let your wife know how bad you feel.
Please come back and tell us how you're doing. We don't know you, but WE CARE!!
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
Still fighting, I feel like someone broke in my house, pointed a gun in my face and freeze that terror and panic. Its been close to 48hrs like this. I cant go to the hospital I know they will lock my in the psyc unit. THANKS everyone, I'm scarred I will not come back from this. Everything sounds reasonable to me. If I jump out of a burning building and die won't God forgive that. My process tells me I am the guy in the burning building. I don't have a LLDr. and I dont care right now. No I am not OK, I dont remember what I did that killed part of my brain. I did something I better check my posts Im like freaking out I dont do illegal drugs I was approved by SSDI 1st application, I take simponi is the newest one http://www.simponi.com/simponi/about-SIMPONI/, zanaflex, celexa, seraquel,oxycodone, extended release morphine, got a note from my pain Dr. approving marajuana but no way Id do that in this mental state. Provigil, klonipin, methotrexate, new dr just started me on torodal, Thats it all the meds finally damaged mybrain, I cant get back from this can I
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
Thanks James but noooooooooooooo way I call a hotline id guarantee I would be in restraints 20 mins latter. My wife is not supportive. She is cruel, degrading, and thinks that I have the choice on how I handle this, If I stay up 48 hours its because I choose to, etc. She is missing the compassion gene. crap someones at my door I am out of here
Posts: 18 | From by a computer | Registered: Dec 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
nomorepain,
Almost ALL of your meds that you mentioned being on currently have SEVERE side effects that can CAUSE your current emotional and psychological condition, and in case this is a side effect of one or more of these drugs, you need to seek immediate medical advice.
Whether this is from a medication side effect, medication interactions, or if it is from Lyme, or both, it is NOT permanent!
You really need to call your prescribing doctor or doctors ASAP, or call your script-filling pharmacy and speak to the Pharmacist on duty, or call an ER nurse and make sure you can stop your meds safely under medical supervision.
Please call the Hotline number listed above, as they can also help you with the process of dealing with your medications and possible side effects. They can get you assistance, or help you find it. I know how difficult it can be to think and make decisions when you are feeling like this.
You are aware enough to realize you are not yourself right now, and that perhaps the feelings and thoughts you are having right now may be beyond your control, and you are wisely seeking help.
You are currently aware enough to be afraid for yourself, so please take this knowledge and act on our advice - please call a Pharmacist and ask about your current list of medications and tell them your symptoms.
If this is from a medication or a bad combination of two or more, that can be addressed immediately with supervision. If it is not the meds but your illness, this can also be addressed. You need to know that what you are feeling right now is NOT you, it is either from bad chemicals from medications, or from inflammation and toxins from the illness.
Don't let the toxins win. They can really do a number on anyone, and make them think for all the world that what you see through their filter is real, but it isn't. Please listen to those that are helping you, and please follow their advice.
I will list what side effects I was able to find with a quick search that might be related to what you are experiencing:
"Seek medical attention right away if any of these SEVERE side effects occur when using Seroquel:
* new or worsening mental or mood changes (eg, aggressiveness, agitation, depression, exaggerated feeling of well-being, hallucination, hostility, impulsiveness, inability to sit still, irritability, panic attacks, restlessness)"
"Seek medical attention right away if any of these SEVERE side effects occur when using Provigil:
* abnormal thinking; ...confusion; dark urine; fever, chills, or sore throat; irregular heartbeat; mental or mood changes (eg, anxiety, depression, exaggerated sense of well-being, hallucinations)"
"Seek medical attention right away if any of these SEVERE side effects occur when using Methotrexate:
* mental changes"
PLEASE get some medical attention regarding your full list of medications, and your current symptoms. When faced with such feelings of doom or utter frustration and confusion, just ask yourself to get through the next 5 minutes, then the next ten minutes, just see yourself through, think of anything you can to get yourself through those next few minutes.
Stay with us, we will walk with you through this. You are very strong! You are going through so much and yet you had enough faith in yourself, and love for your children, to ask for help.
Anyone who has gone through such trials as you deserves a medal, and mountains of sympathy, compassion, admiration, and respect. You certainly have the respect, sympathy, admiration, and compassion of your fellows in Lyme here.
Hold your head up high and trust in yourself, you can get through this too. This will pass, and you will see the other side of this difficulty, you will find healing, and you will be glad for it. Things will look very very different when you get through this, like night and day.
posted
Whats going on with me. I got out of the hospital 1 week ago. They did change my antidepressant, non of them work I nam off the celexa. cant remember what it was replaced with
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
No way, They will put me in protective custody, I know they will. I just gotts try to deal with this still not sure what this is. My psyc in the hospital didn't seem to know what he was doing I didnt tell them all the meds Im on, I dont trust them.
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
My moods are swinging severly but I dont believe I am a danger to myself. I just feel wrong, especially mentally but also physically
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
I want to say I apoligize if I didn't or don't seem greatfull for all you help and support. I just right now don't have the words that could accuratly express just how much this means and how much its helping. I can't stop my mind, it just will not stop, it feels like my brain is wide awake with thoughts racing 150mph through me. How can I slow my brain down? I am serious I can't even slow my head down???????????////////
Posts: 18 | From by a computer | Registered: Dec 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Call your doctor and check on your meds. Please.
HAVE YOU EVER BEEN CHECKED FOR LYME OR OTHER TICK BORNE DISEASE?
Maybe you have lyme, maybe not. But you should be checked by a specialist.
For now, you MUST tell your wife. I'm sure she'd rather get you help than have your children find their daddy dead.
CALL THE HOTLINE! They won't put you in restraints, but they WILL address your extreme pain and depression.
YOU NEED HELP! YOU NEED TO BE IN A HOSPITAL! WE ARE NOT GOING TO SIT HERE AND SUPPORT YOUR SUICIDE!
If you can't talk to your wife, give me her phone number and I will!
To slow your brain TAKE THE SEROQUEL and the Klonopin!
Then call the damn hotline!
STOP BEING SO SELFISH THINK OF YOUR CHILDREN!!
James
Posts: 872 | From New York City | Registered: Jun 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Michael we know you are not crazy. It is your meds!
Please seek a LLMD in seeking LLMD in xxxx section
and if you have to call a friend to get you there.
When you call the LLMD, tell them your current
condition and meds you are on. They may be able to
work you in sooner. A lot of your meds can have
the opposite effect they are supposed to have as
detailed by Nenet's post. If you have been on
them for more than a week you may have to be
weaned off them. So you need to do just what
Tincup said call your doc and tell them you are
experiencing this from the meds.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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follow the advice of others and GET IN TOUCH with a LLMD...It certainly could be major part of WHY you are feeling like this as well as side affects of the meds you're on.
Don't give up on this...follow your heart and find the help you need. You were brought to this site for a resaon.
I will continue to pray for you!!!!!!
God be with you, Karen
P.S. Michael--what a beautiful name
Posts: 423 | From Virginia | Registered: Nov 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
NeNet. THANK You for posting all the Meds and side affects etc. That was what i was planning on doing.
The amount of meds and the kinds are important.
Michael. Does One doctor prescribe all of your meds? Do all the doctors know about eachother and their prescribing if not.
I would start by writing a list of the meds and who it was prescribed by. And talk to each doctor. Call their office.. Talk to the nurse there and tell them what is going on.
Tell them of your concerns.
I bet the medications might be doing something to make you feel this way.
I am not a doctor and can not tell you what to do.
But i might evaluate when this started and what changed and eliminate or go backwards on the meds.
Ask your doctor first. Tell him what you suspect. Most doctors will trust your instinct.
There could be a process of elimination.
It is amazing what one med can do. I have had some horrible reactions to just things like Lyrica. I thought i would die just after a normal dose. Stopped the med and it went away.
I hope you get in touch with your doctors about this and give a medication evaluation a chance.
Also if you have not seen the mepron blues posts, that drug can make you go from one person to feeling like someone else and wanting to die...
Many including me have been through it and when stopping the medication ... within a day the feelings are lifted. Do not underestimate the power of these drugs..
You can feel like yourself again.. Michael
Let us know.. Please..
sending prayers thinking of you
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
This really does sound like a drug side effect or interaction. And needs to be straightened out now, even before you take action on lyme disease.
I saw an entirely sane person, reasonable and restrained, become an entirely different personality on a drug she was prescribed. And later we found that was a known side effect of the drug.
You can check these side effects yourself by reading the material that is sent with the meds by the pharmacy. Sometimes it is a bit sketchy, so you can also look them up on the internet, each drug individually. But it might be hard to check interactions, since they are not all known at this point. If you are on a lot of drugs, it figures that there might indeed be interactions. The pharmacist and the doctor who prescribed these things would be in the best position to know.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Uhhh, anyone besides me suspicious about this? It's a little, no, a lot, much.
Posts: 872 | From New York City | Registered: Jun 2008
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posted
James, I think it's ok - it's pretty hard when there's a big reaction to meds, and sounds like the meds were recently changed. And need to be managed by a doctor working with Michael. That's Michael's job tomorrow...
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Huh, I don't know if I would prefer it to be a hoax or real. I think I'd rather someone fake this than to be suffering.
Posts: 872 | From New York City | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Michael,
I was diagnosed as having bipolar spectrum...probably due to Lyme/co's. I finally found a GOOD psychiatrist (after too many not so good ones) that was able to get me feeling better by finding the right psych drugs. The point is to keep trying. You will eventually find someone that can help you.
The drug Lamictal really helped me, but something different might help you.
Tell them everything you are on. They can't help you if you don't.
Also, I am now completely off psych meds, due to treating for Lyme/co's. I now think like a normal person. I also feel like my IQ went up from when I was first sick.
So there is hope. Just let them treat you now until you feel stable mentally. Once you are stable, then get treatment for your suspected Lyme.
I am an example that you can get your life and your sanity back. Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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I just got released from the hospital. I am sane again. Thank you all for you thoughts and post. Me having something to occupy my mind was undescribably important. I understand nobody knows me and I could have just been some drunk looking for attention. Let me assure you that was 100% real, even my thoughts which were so irrational re-reading my posts seemed absolutly reasonable and real to me.
Here is what happened, a new psy. I was referred to just out of the hospital took me off celexa and put me on something called Geodon as he wanted to concentrate on Bi-Polar as those were the dominant behaviors at that time, I had some sort of allurgic or reaction which basically put me in the worst panic attack I have ever had. This lasted several days, where I got virtually no sleep. I was paranoid and had mild halucinations,racing thoughts that wouldn't stop, which is usually what happens when the body panics and fight or flight takes over, but this one lasted days. So this was all caused by a dangerous side effect from a new RX.
Again thanks every one for taking your own time and efforts to help a stranger that could have been saying anything for any reason. Looking back this site and you may have saved me from hurting myself or worse. God Bless and I will be around.
Michael
Posts: 18 | From by a computer | Registered: Dec 2009
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Nomorepain that's good news. Stick with this new doctor and perhaps look into getting tested by a LLMD. Chronic Lyme can have many psychological affects along with extreme physical pain but it doesn't mean they will last forever. Believe it or not many here have gone from wheelchair, to leading a decent life. Once a correct diagnosis is made, if you have lyme, treatment can lead to a huge reduction in pain and life that is worth living again! Please keep us posted and know you are not alone living a life of struggle. Show your children how to fight so they learn to overcome the hardships of life. Positive thoughts only, allowed! Holiday Blessings to you and your family,
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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Michael, glad you are OK. Geodon did the exact thing to my husband. He just wanted to jump out of his skin among other things.
I had never heard of the drug till they gave it to him He's doing great now, better than he's been in years.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I'm so glad you are feeling better. You had us very worried about you.
Don't disappear on us now. Please keep us posted on how you are doing with your lyme treatment.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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I wasn't at the hospital that long. Whatever they were IVing me really started working quickly. Im not 100% back but I am going to be fine.
Posts: 18 | From by a computer | Registered: Dec 2009
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posted
Good to hear, and that you understand what happened.
I hope you will continue to work on alleviating as many symptoms as you can.
I'd also like to encourage you to work on being understood by your family. You deserve it. You are their dad and husband, and you have a bona fide illness that you shouldn't have to apologize for.
Posts: 13117 | From San Francisco | Registered: May 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Glad to hear you are doing better!
Sometimes it takes awhile to find what helps. Please stick with it...you and your doctor are obviously doing something right because you sound a lot better.
Don't quit until you are feeling like your normal self psychologically. I know you can get there, but it might take time. Best of luck...glad you felt like you could reach out and get the help you deserve.
Posts: 4590 | From Midwest | Registered: Jun 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Pain sucks noway around it. I know I was infected in 1988 and until this past year sever pain everyday in one form or another . Find out what they Ived you with and post it here you may be able to help others too!!! I hust hope it wasnt any steroids.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Provigel did a number on me.....could not take that drug.... very scary things were happening with my mind..and couldn't understand why....
it was the Provigel...
glad you are doing better...
keep us posted... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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I just got an appoint with a Lyme and tick born disease expert. I had to fill out a history and they called back very quickly and said I qualify for an appointment. Thanks for pounding that suggestion in, it may just change my entire life.
God Bless will keep in touch.
I will find out exactly what the hospital gave me, I know 1 of the meds was Diazapam I think, an anti panic med.
Posts: 18 | From by a computer | Registered: Dec 2009
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Hi nomorepainnn, I'm glad you went to the hospital and got the crisis taken care of. I'm also glad you made an appt with an LLMD.
I was very ill and prayed for death, too, though I never got suicidal. I just didn't see any way out of the pain. Now, I'm 100% well. Treatment makes a huge difference, I'm glad you're pursuing it.
Hang in there, it's not an easy disease and the psych symptoms are just plain horrible.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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also..as much as it is not meant purposely..for some people to get upset with an incredibly ill person is heartless..
I too am afraid of being put in a psch hospital and have been and physically they did not address any of my medical problems and i declined very badly physically.
Your story is so similiar to mine..that is why i do not post alot..in fear of others getting totally upset with me but you are very ill and need the help
Surround yourself with supportive people and I will say this...as had as it is because you live with them...do not waste your time on trying to explain lyme to your family unless they are willing to learn and help you...
I am seeing a lyme literate psychologist who is helping me immensely..i live every day also praying for death but i have had to pull all the limited strength in me to get myself to an llmd who takes insurance
I was diagnosed with lyme, bartonella and other infections a few years ago after being misdiagnosed for mahy years
I have social anxiety, possible anylosing spondylitis, 3 spinal cord injuries from severe dengerativ disc disease, emotional issues, seizures, thyroid disease, and more
I was put on a very high dose of steroids..the strongest steroid you can be on and i had noone to advocate for me not to put me on steroids..i was too ill and my husband claims he forgot about the effect steroids have on lyme
when i educated him and he educated himself over and over and he did not even contact my llmd when i was in the hospital for a month on steroids and so even the llmd did not know how much i was on...
well..ever since the steroids...i went downhill and have been progressing ever since and they pulled me off them too fast and i went into total adrenal failure and now need a small amount of steroids just to live
I forgot your med list but if you are on steroids....steroids have a horrendous affect on depression and emotional problems, whether preexisting or not so i would keep that in mind....
I think i am anklyosis spondylitis from the lyme and i am afraid to go to a rheumatologist because they will want to put me on heavy duty steroids...i cannot move my neck, am on round the clock meds oxycontin and percocet and even on meds, my pain is a 100 out of 10 most times of the day.
I cannot often bend my neck up to even stand straight..it is as if my spine is fusing together or something.
Anyway...i have the name of a lyme literate psychologist if you want it..she is wonderful and is helping me immensely...
all my love and support, nancy
p.s. i wish i wasn't so ill myself right now and i could offer more help and i know it is easier said than done but realize that you are ill and hyou didn't do this to yourself and i agree you do need to seek support but a psych hospital is not the place for you...
a hotline is a good idea and i use it too and there are also warm lines if you need to chat during the day and just need someone to talk to
(i used to work in social services and health education) now i am too ill to help myself but i used to help others with resources, etc
I am not religious at all so i will not say pray to god but everyone is entitled to their beliefs but i will say keep reaching out and we are here if you need us...
i am here as much as i can physically and emotionally can be right now as i am desperaely trying to seek help for myself and trying to deal with my own very tragic family situation for which i am not wasting my energy trying to educate them anymore because they are emotionally unavailable to me and always will be and always have been...
Thinking of you michael
love nancy
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by lymebrained: ....Surround yourself with supportive people and I will say this...as had as it is because you live with them...do not waste your time on trying to explain lyme to your family unless they are willing to learn and help you...
...i am here as much as i can physically and emotionally can be right now as i am desperaely trying to seek help for myself and trying to deal with my own very tragic family situation for which i am not wasting my energy trying to educate them anymore because they are emotionally unavailable to me and always will be and always have been...
Thinking of you michael
love nancy
Michael,
It's very important that you keep the appt with the LLMD and if TBD's are in the picture, get in treatment right away! I can't emphasize this enough.
As much as some might not like this, Nancy has given you some real pearls of wisdom here. It's a terrible reality, but for some of us, family and those you surmise should be supportive turn out to be the bane of your existence, second only to the illnesses you suffer from and sometimes, they even win first prize. I, at least had the ability to completely separate myself from my family and unsupportive friends and to this day, remain separated and am good as gold with the decision. You, however, can't completely separate your physical location from your family and given that you have children, you shouldn't. They (kids) don't understand for now, but they could gain a great deal of understanding in the future from living with your experience. You say your in a basement location that's been converted into a room that only you inhabit. Well, okay; aside from mold issues and some others, if it's the best way you have of protecting yourself, then, you do what you have to do.
A couple of hints if you begin treatment for TBD's and since it's highly likely you'll be herxing soon enough, I recommend some supplies:
Get a fridge / freezer of your own down there, if you don't already have one. Stuff the freezer full of ready to eat, GOOD foods and the fridge with no sugar added hydration items; I'm sure others will come along and give you suggestions. (I've taken a liking to pomegranate juice of late. It's rich and I can't drink much of it, but it's good for me, however, your tummy might object, so try it now before you stock up.) Good water, of course, is all important.
A microwave is important, if you can manage it. Since the kitchen is usually a family hangout, you need to eat GOOD food, in peace.
You'll need extra bed linens, blankets, towels, heating pad and ice, or ice pack and large bowls to soak wash rags, etc.
Find a place for your medications, it should be DRY, away from light and cool. (I'd really be concerned about the dry part, since you're in a basement.)
I can't even begin to advise you how to 'steel' yourself again an uncooperative spouse and others that don't understand. You'll just have to accept that they might not ever 'get it' and avoid certain, maybe all sorts of conversations that lead to any upset; it will take a lot of practice. You must do it, as your life, literally, depends upon it.
With regard to Religion, all I can say is that I Believe and can't imagine having no faith while going through the trials that you've no doubt encountered and are about to encounter. While certain beliefs might indeed be portrayed in our modern society as something that I disagree with in many ways, I can tell you that the Truly Faithful suffer pain as bad or worse than anything you, I or anyone else on this site has yet to suffer and are tough as nails, while being gentle as doves. I've met a few of them face-to-face and don't understand the depths of it myself, but we all will, someday.
You need to find something or someone to hang onto for this ride; the people on this site are an excellent starting place. Keep in mind that we're all suffering too and very human and don't always get along, but we manage.
Get started collecting the needed items now and try not to worry about other people dissing you. Trust me when I tell you that, "Everyone is going to get their turn". One way, or another, Michael. Pain is the great equalizer and will eventually be known by all.
Please check your thread often for suggestions on setup so you can better handle your treatment, should that be the outcome.
INDNJC
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Michael, glad to hear you are better. The support here is great.As for your family it would be good for you to get info on Lyme Disease and share it with them, my children were very young when my husband and i first had symptoms of Lyme and they helped out any way they could...kids can handle alot more than adults i think.most days i am either on the couch or in bed,and my kids will ask what i need and they will get it,(it made them more compassionate to other people)I think it was all the meds that did that to you, are you taking any vitamins or probiotics? that would help.If it were not for this site i too would feel alone.
Posts: 16 | From Michigan | Registered: Oct 2008
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WildCondor
Unregistered
posted
hey!Hang in there because it will all get better once your meds are stabilized.
I want to make sure the tick borne disease specialist is indeed, a good one, and you will be on the right path. Let us know your location, etc., or if another poster can confirm you are going to see a good LLMD and not some duck that would be reassuring.
Meds can do a number on you....this takes time. Just know that you are NOT alone and peole out there care about you. We are here to help, anytime.
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