I have a big concern besides the physical problems with whatever I am going through but the psychological ones as well. I feel like i am going crazy and have become ultra sensitive to just about all medications. I now suffer from very severe depression as well as depersonalization/derealization. The neurological problems are severe as well very severe headaches that affect speech, thinking, and vision (unlike the migraines I have suffered from for 20 years). I have a multitude of symptoms that right now I am not capable of explaining.
t is very diffiucult for me to post in forums and write email but I will try. Please forgive me if this is too hard to follow. It is next to impossible for me to go back in edit things. And I have no idea how to change the font so this is easier to read.
Is there anyone out there who also suffers pretty severe psychological problems as a result of lyme disease or am i just completely going off of my rocker. I truly feel that i am living almost a living death and have wondered how to go on when my quality of life is so poor....I am virtually bedridden now and to have the psychological impact and complete isolation is about more than i can bare.
I would greatly appreciate some response to this.....I am desperately looking for a little hope. Please e-mail me if someone is uncomfortable posting in open forum. My email is [email protected] (I wish I could have used the true colors name here but I accidentally made a mistake when registering and because of a typo put down a nonexistant email address so couldn't get the password)
My best wishes to all,
BrokenWings
I wish you a good appt at the end of the month and a very speedy improvement in your health!
Tina
I suffer from derealization as well--sometime severe, and sometimes tolerable. It is common with lyme. I also have babesia. Which tests are you having done? Are you going through Igenex, MDL, and/or Bowen labs? Are you being tested for coinfections? Do you have an LLMD?
We can help you with all of these things. Just let us know where you are in the process. There is hope. Where are you from? You need to hang in there until you get your test results back, and you need to find an LLMD. Have you been tested for other things and had them ruled out? We need this information to help you, but once we have it you will be on the road to recovery.
Please get back to us,
Sara
Here is alot of info.
I agree with all the suggestions above and add to it the suggestion of seeking compassionate support from a counselor/minister.
Anti-depressants and counseling can be affective.
There is a new ssri that is affective for pain and depression--Cymbalta.
There are others too.
Depression can deceive you and tell you that there is no hope. Don't listen to that lie in your mind.
There is always hope.
Seek the truth of your disease, stay persistant and spend hr after hr doing your own research.
EMPOWER yourself anyway that you can.
Remember, thoughts and feelings are a choice.
Inspite of your emotional and physical pain choose hope.
Take care,
Peace,
BJG
I'm sorry that you are feeling the way you are right now, but there is HOPE! Hang in there!
First and foremost, I hope you find, or have found yourself a LLMD. I went to many, many 'specialists' for years, that ran many, many tests, only to find nothing! They didn't have a clue!
And your tests need to be sent to the 'proper labs', that know WHAT they are looking for. And to be tested for co-infections, Babesia, Erlichiosis (sp), and Bartonella, and there are others that slip my mind at this time.
Welcome to the group and you have come to the right place, there are wonderful people here that will help you in everyway we can. And we can all relate to your feelings, so never hesitate to ask anything.
Good Luck and post as often as you are able. Reaching out is important! This board is full of support 24/7 and someone is always up!!!
Take care and I wish you the best,
-laserred-
I did see a LLMD that i was referred by someone. The appointment did not go very well though because I couldn't really explain much of anything....I had one of those headaches I get that affects my speech and makes it very difficult to think straight. I ended up at the ER afterwards had a cat scan to make sure I wasn't having a stroke cause my speech was so affected.
I do not have anyone that can assist me at these appointments but I did the best I could with a checklist of lyme's symptoms and a list of symptoms I had made up when I was still capable of doing that. He talked about multiple chemical sensitivity and my gut feeling is that is a symptom of whatever is wrong with me and not just that itself. He seemed to think this maybe just what I have (and i do not understand this because i have just about all the symptoms of lyme). I think it was because on my list of symptoms I wasn't able to edit I mentioned a few times my very negative reactions to medications.
The doctor was not going to order the Western Blot from Ignex (sp) becuase I had had a negative western blot before that I had done at my local hospital. But I pushed for it and I also had the urine thingy done the one where you are on antibiotics. I am allergic to many antibiotics including the cephlosporins (keflex, duracef, etc.), pennicillins (hives with polymox), zithromax, I also had a bad reaction on levaquin.
This doctor put me on Clindymicin 300mg 2x day which is a low dose of it. The normal dose is 300 mg 4x day. Since I have been on it my symptoms have been worse. I am not sure if this is due to this medication or the progression of whatever I have, or something else. I was supposed to have an appointment with this doctor again March 3 but had to reschedule and wasn't able to get another appot. until the end of the month. I have other health challenges and very severe chronic pain as well.
My ability to tolerate any medication is very low. I have never heard of anyone who was so sensitive to medications. I tried antidepressents in the past for FMS actually (I always though it was something more than FMS). I could not tolerate these. I am taking meds to sleep I cannot tolerate. And also I do not have a good primary care doctor. I went to a new one but felt dismissed. I was tested for other things but nothing showed I don't remember all that I was tested for. Soon I will check if I can and list some of them. This doctor had bloodwork done before i ever saw him (I forgot to tell him I think that i had just finished a round of antibiotics for a sinus infection before I had testing done. I hope that didn't interfere.
Yes I have debilitating fatigue too if I forgot to mention it earlier.
And no I am not able to work, drive, or do much of anything at all. I am virtually bedridden and have just about no quality of life. But have not been consitently under the care of doctors due to lack of support on theomefront so to speak and also trasportation not to mention my phobia of doctors and the fact that I really and truly need someone to help me talk to them. I won't apologize for needing an advocate. Things have gone downhill fast for me...very fast.
I apologize for how lenghty this is and rambling. This is pretty much how things come out. I can't organize or edit much.
Best wishes to all,
BrokenWings
oh yes ps. I could do with a recommendation for a very good primary doctor and neurologist if anyone has
suggestions. I may not have lyme but something else or lyme and something else.
[This message has been edited by BrokenWings (edited 21 March 2005).]
quote:
Originally posted by BrokenWings:
This doctor put me on Clindymicin 300mg 2x day which is a low dose of it. The normal dose is 300 mg 4x day. Since I have been on it my symptoms have been worse. I am not sure if this is due to this medication or the progression of whatever I have, or something else.
Your worsened state might also be due to a candida overgrowth, common in people with lousy immune systems. I recommend that you look into that. Doctors normally disregard it though, so ask a naturopath or do your own research online or at the library.
quote:
My ability to tolerate any medication is very low. I have never heard of anyone who was so sensitive to medications.
Hey, I get the shakes from aspirin: you're not alone.
quote:
I tried antidepressents in the past for FMS actually (I always though it was something more than FMS). I could not tolerate these. I am taking meds to sleep I cannot tolerate. And also I do not have a good primary care doctor.
Every time I go to a doctor and come out with a new prescrition for this or that I end up getting worse. Once, while I was taking something new to help me sleep, I read a front page newpaper story about how it was potentially extremely harmful.
Good, open-minded doctors are rarer than honest politicians.
If you can get around to reading, I recommend the following books (in no definite order):
* It Could Be Allergy And It Can Be Cured, by Phillip Alexander
* Health and Nutrition Secrets That Can Save Your Life, by Russell L. Blaylock
* Candida, by Luc De Schepper
* Fit for Life II, by Harvey Diamond, Marilyn Diamond
* Nutrition and Physical Degeneration, by Weston A. Price
* Live Right 4 Your Type, by Peter J. D'Adamo, Catherine Whitney
You might want to look into homeopathy as well.
I know that a bunch of books to read might not be what you're looking for right now, but personally I find some comfort in learning about my health. It gives me some control back when I feel like there's nothing I can do about anything. And I also pray. Then I know that even when it's completely beyond my control - and, face it, life only ever seems in our control - that God can look after me. I've had most of my positive results from prayer, actually.
All the best with your health. Feel free to email me for anything I can help you with.
[This message has been edited by Wellsoon (edited 21 March 2005).]
So sorry to hear you are so sick, and so alone. Lyme often presents as primarily neuro and psych symptoms. My son has little to no joint pain or tingling, but plenty of concentration and memory problems, and his emotions almost got him hospitalized once. I have brain stuff, too, but I also have joint pain.
Here are some links for neuropsych Lyme:
http://www.lymesite.com/neuropsychiatric_lyme.htm http://www.mentalhealthandillness.com
http://www.columbia-lyme.org
Many of us have troubles getting our families to understand what is going on with us. Heck, a lot of times *I* don't understand it, so I guess I shouldn't always expect them to!
I have also been to the doctor on bad days, making it very hard to explain my symptoms. I have kept a log of symptoms, so I could just give the list to the doc on bad days. Write out any questions you have for the doc as well, so when you see him, you won't forget.
Take care,
Shaz
[This message has been edited by shazdancer (edited 21 March 2005).]
[This message has been edited by shazdancer (edited 21 March 2005).]
If you do have lyme it is not uncommon to feel what you are feeling.
It really affects how you think and the brain. I remember one appt where I was like you mention almost falling over and didn't make much sense. I have experienced a lot of isolation from lyme, and when it hit me younger it was like psych stuff more than physical as mentioned above. I just didn't know until last year that lyme was it.
Seeing an LLMD is a good start. MCS(multiple chemical sensitivities) is not uncommon in lyme, I have it as do many others. When very sick i kept smelling mold in my house and going crazy, but treatment helped this for me, so far, as candida is common in chronic illness as well, many end up thinking they have only candida when it is both, from off/on abx on a weakened immune system over the years.
Getting on a good probiotic while on abx, can help to keep yeast at bay and you can even follow a candida control diet if you wish.
Hope you get some answers soon or see improvements on treatment. It is also not uncommon to feel worse on abx as the bacteria are dying.
Good Luck
lymiecanuck
It sounds like you're feeling very isolated and alone but at least you're on this site where you can get support. You're the only one who can take control of your treatment and health.
Keep a journal. Put down your symptoms every day. You think you won't forget but you will. I wish I had kept a journal because symptoms come and go and your doctor will need to know all of your symptoms and the progression of things esp. for a diagnosis.
Take care and let me know how you're doing.
zuzuu
Broken Wing,
Next drs. appt., take a TAPE RECORDER since you do not have anyone to go with you. They will understand. Just make sure you have a fresh tape, NEW battery, and know how it works.
Yes, we all have these problems as our illness becomes late-stage.
Other folks have given you links, so check them out as you feel up to it.
Betty G.
quote:
Originally posted by bettyg:
Next drs. appt., take a TAPE RECORDER since you do not have anyone to go with you.
I also find it tremendously helpful to make a list of all my questions and symptoms (at this point I have a daily log which is especially important during antibiotic treatment). But whenever I think of something I want to ask at my next appointment I jot it down on a postit and add it to my calender book.