New to Lyme Horrible headaches & Severe Depression

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Nanabutterfly
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/6/2008 4:46 PM (GMT -6)   
Hi Everyone,
Seems that eversince I found out I have Lyme and Babesia it has become my every thought.  Probably like many of you I saw 30 drs. before i was diagnosed.  Six of those devils were neurologists!
I have read so many things that it is so overwhelming and I just go in circles.  I am seeing and Infectious disease dr.  He started me out on doxycycline for 3 weeks and I couldnt tolerate the stomach problems.
I was having a good herx reaction to it though.  Now im on Ceftin for 2 weeks.  I have read that this is a bad drug choice because it is a cell wall in-hibitor.  I have been symptomatic for over 4 years with  Headaches, depression, ear ringing. anxiety,flu symptoms , fatigue and this last years with joint pain.  The depression is so overwhelming sometimes I want to die.  But of course I dont really want to,  just want this pain to end. Does anyone know how long it takes before you notice any improvement?  Probably a dumb question
My Dr. says that he isnt going to treat me for babesia because he doesnt think I have the symptoms and its just along for the ride. Im on an anti-depressant but its not working,  tried them all.  I really try hard to stay positive but some days are just so hard.  I could cry at the drop of a hat.  How do you get this awful disease out of your brain?
 
 
Thanks for any comments!

woodswalker
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 11/6/2008 6:02 PM (GMT -6)   
I'm sorry that I don't have an answer for you. I'm going through the same thing
I saw my doctor today and broke down in tears in his office because he told me there was nothing he could do for me.

My next move is to research natural medicines, eat right and do my best to keep myself healthy - don't know what else to do.

I sincerely wish you the best of luck!

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/6/2008 8:02 PM (GMT -6)   
Nanabutterfly and Woodswalker,

This disease and the journey that you are on to get well is so very difficult. If you have read some of the posts recently you know that you are not alone and that your emotions as well as physical pain comes with the infection. The combination of brain fog, pain, and depression make it very difficult to sort through all the information that is discussed. You need to go easy on yourself and understand that you may need treatment for a while to start feeling better, including being able to just manage your treatment and keep track of things. I don't know how old you are or what your situation is but I imagine that you are juggling a lot - as we all are.

Obsessing on the disease is also fairly common. I mean - it is a pretty strange disease - it sometimes seems like science fiction. As you get better and get part of your life back you will find that you think less about it. I found that taking a break from information is important to do - especially if it is getting overwhelming. But, believe me, I had notebooks of information and I bet a lot of people on this site do too.

I remember so many tears and nights in pain and I would say that I just didn't know if I could go on much longer. I knew I could never act but it did make me understand those people who talk about "quality of life" being an important factor in their medical care decisions. The migraines and the medicine I would have to take for them made me feel even stranger. I hardly ever have one any more. My pain is almost gone and my mind is clearer. To get there took a while. I laugh now and can take walks and accomplish lists of things I need to do and feel hopeful about the future. It is an incredible change.

I remember one neurologist who thought I was crazy because I couldn't stop crying - I just was having a melt down. Of course, that was after he starting asking me why I didn't have any children and if that might be why I was depressed (I am 57, for gods sake!). I saw so many doctors and none of them got it. I went through so many tests and they took away a lot of years from my life. Having said that though I now know that I can't change what happened but I can put up a good fight to get better. In the last 5 years the amount of information available to patients has increased dramatically. We still don't have enough doctors to treat us but it is better than it was. The financial aspect is also a little better for some, not many. I am fortunate - my insurance company has not argued once over my treatment. I guess they believe I was ill and needed extensive treatment.

I have also shed some tears with my LLMD because I was discouraged. My doctor is not all warm and fuzzy but deals with difficult cases - and that is what I needed.

You can get better - you just need to get a good doctor who knows how to treat all the aspects of Lyme any co-infections that you have, and is willing to treat pain, depression, or whatever you are struggling with. You also have to be willing to stick with the treatment and not give up. I cannot advise you on what route to go in treatment - mine has been a combination of antibiotics and some supplements, and medications.

Forgive me if I have said too much but I really felt you asking for some help and I don't want you to feel alone. Many people on this site will help you along the way.

Sincerely,
Beth

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 11/7/2008 1:48 AM (GMT -6)   
Dear Nanabutterfly, Welcome to the forum. I am sorry for your suffering and want you to know everyone here totally "gets it" and can sympathise with you.

"Dittos" to the well spoken words of wisdom from Beth (bcaring).

Sometimes infectious disease docs are not the best to use for lyme and coinfections. Be sure to find a lyme literate medical doctor that has been recommended by your state's lyme association/support group or from our veteran member Ticker. You can email her for suggestions. I say this because lyme and Babesia are NOT treated with the same drugs or natural stuff either. Plus, Bartonella can cause some mean psychological problems too, and should be addressed if you have it. Sounds like the current doc might not be that experienced? You may want a second opinion.

There are no dumb questions. Ask anything you want to know. I am sorry to say that improvement varies with each person---every combination you think of exists! The full spectrum, from quick recovery to many years. There are lots of reasons for this but you will learn as you go along. It can be overwhelming, just as you said, so take your time, learn at a comfortable pace, and take breaks from it when you need to.

Wishing you all the best. bablymers mom

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 11/7/2008 2:14 AM (GMT -6)   
Hi woodswalker! Welcome to the forum. I am sorry you are sick, but you have a good plan--research natural meds, eat right, keep yourself healthy. Your doctor did you a favor by being honest and saying he could not help you. He would be a waste of time, money and energy. By his own mouth and suggestion, you are now FREE to find another, better, doctor----a good lyme literate medical doctor. You can get references from your state's lyme association, or email our veteran member Ticker, and ask for suggestions. Let her know what state you are in. Also, you can start a new post and ask people to email you with their thoughts if they are from your state. Keep fighting for your health, you're worth it!
Lyme docs are often good diagnosticians, and can help you find out what is wrong even if you do not have lyme. They see so many sick people that they are more experienced at thinking "outside the box".

You may want to read the topic at the top of the first page of this forum entitled, "Newbies, check this out". It will start you learning.

There are "western, drug therapies" as well as alternative, natural therapies. There are drugs lists on some of the lyme sites when you "google", and some examples of natural approaches often use the name of the doctor that created it, such as Dr Cowden, Dr Zhang, Dr Jernigan, Buhner, Shoemaker.......the list goes on. Unfortunately, each person seems to have to sort through lots of methods to figure out what they want to try. Sometimes it is just trial and error. Sometimes the doc gets "lucky" and picks the right stuff. It 's a long , tough, journey but it can be done! This forum will be a huge help. So will the internet. Lots of info available.

I hope your return to health is swift. Best wishes. bablymers mom

Nanabutterfly
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/8/2008 5:31 PM (GMT -6)   
Hi Everyone,
  Thanks so much for the caring and informative answers I have recieved.  It really helps knowing that their are people that have been there and will help with this journey to recovery.
 
 
Sincerely,
NanaButterfly
 
 
P.S.  My Dr. wont treat me for babesia,  I tested positive but he says Im not symptomatic even though some of the symptoms are the same as lyme,  like the headaches and the fatigue and flu symptoms.  He claims the babesia is just along for the ride  but im not sure does anyone hve any ideas?    Thanks    Dottie

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/9/2008 8:12 AM (GMT -6)   
Dear NanaButterfly,

You're not alone in your pain, physically and mentally.

This journey is difficult, but people do have a life after Lyme Disease.

I am also struggling with poor mood lately. I don't know why. But it will pass. I know I do not enjoy life right now and feel that living is for the healthy and spiritually intact. Lyme is shattering and unfair in ALL respects, made all the more difficult by the askance looks and inane comments we must endure from doctors and family.

But there's only one thing we can do is turn this depression and anger and funk into a positive force and search for our own unique treatment plan.

Keep faithful and vigilant during this time. Don't give up.

This too shall pass.

Nanabutterfly
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/9/2008 8:08 PM (GMT -6)   

Thanks! to " Hoping to find a cure "

I needed that encouragement, this is the hardest battle I have ever had to fight.  I used to be a high energy multi-tasker who helped raise infant grandchildren.  I have always been there for my family and am the oldest of 6.  My brothers and sisters have always looked up to me and now I dont even know who i am sometimes.  I know one thing I am a fighter and I never give up.  Sometimes I want to but I keep the faith. Guess we all need to help each other and remond each other that this is a long battle to fight.

 

Take care & thanks,

Dottie


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 11/10/2008 3:56 PM (GMT -6)   
Butterfly,
 
Something I thought of after reading this post and thread is that "minocycline" is apparently the drug of choice for headaches (head symptoms).  I'm on my 2nd 8-week round of mino, and I believe it is working (very slow though). 
 
chief

Nanabutterfly
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/11/2008 2:15 PM (GMT -6)   

Cheif 7,

Thanks for the info on monocycline!  Do you have the bad headaches, are they getting better?

bUTTERFLY

Nanabutterfly
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/11/2008 2:21 PM (GMT -6)   
Keep Hope,
Thanks for the onfo on the Meds. I know that My antidepressant isnt doing the job, but I have tried them all. I THINK THE lYME IS MAINLY CAUSING IT. i AM KNEW TO THE lYME MEDS SO i WILL BE AWARE OF WHAT i AM FEELING AS THEY GIVE ME NEW MEDS.

tHANKS AGAIN,
bUTTERFLY

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 11/13/2008 1:26 AM (GMT -6)   

Butterfly,

I've had "head and neck pain" everyday since Jan 7th, 2008.  In January for 2 weeks, it was 9/10, 10/10 scale.  I didn't die and it wasn't a brain tumor or aneurism.  Feb-March, it was 5/10 to 8/10 scale.  Other symptoms began appearing.  April - June, it was 3/10 to 6/10 scale.  I started doxy then mino in June (finally diagnosed).  June - Aug, it was 3/10 to 5/10 scale.  Aug -present it is 2/10 to 3/10 scale. 

This is only referring to my "head and neck pain", which is my #1 symptom, of my lyme disease.  Throughout the year, I've called this pain headaches, brain fog, head pain, stiff necks, etc. 

I am getting better and one day I will have a clear head again. 

chief


Nanabutterfly
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/14/2008 6:51 PM (GMT -6)   

Hi Cheif7,

Glad to hear your head pain is getting better!  I have had terrible stiffness in my neck , especially when I bend my head backwards.  I am going to ask my dr. for minocycline next week.  How was it on your stomach?  I hear it isnt as bad as the doxy!

Take care,

Butterfly


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/14/2008 7:26 PM (GMT -6)   
hi nana,
mino is a abx and not for headaches. and it can do some really awful things to you neurologically. as I found after a german dr. put me on them for 100 days. the depression does get worse. and you have to be careful. I was treated for 4 years for mine and cymbalta finally was the drug of choice of me because it also helped with pain. and it gave me energy too. so that I could get out of bed and walk with out support. but then it too stopped working for me after 2 good years. my dr.s wanted me to take more. but I wanted to go after the root of the problem, lyme, instead of taking all of these pills.
I am in my 5th week of treatment in scottsdale, AZ for treatment. I only just found out about this place. I called them at envita and flew out. I was in bad shape when I got here. And I was not the nicest person. Migraines and pain will do that to you. In one week it was like someone cleaned my dirty windshield. I could see, I could think, my pain was gone.
My mind is so clear now and my vocabulary is back. I could not finish a sentence before hand. I am off all of my fancy drugs now. Maybe that was not right. But honestly I wanted to know how I really felt not drugged up. I do not have pain or any of my regular symptoms. I am shocked. I had felt so good that I flew all the way back to Florida to see my kids and take them trick and treating for the first time in 4 years.
But after taking 9 days off, playing hooky, I started to notice that I was feeling things coming back. My treatment is 8-10 weeks. They say that lyme is able to survive abx in any dose.
Doxy never put a dent in my Lyme. Nor did the minocycline or the fluconale.
I got Lymes in 2004. So did my 11 mos old daughter and my favorite dog Toto.


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/14/2008 7:31 PM (GMT -6)   
Lyme is in every oran in the body. But I think that the darn bacteria may not be able to defend itself against collidal silver. Because it does not view it as a threat in the first place. So therefore it does not wrap itself into it protective shell.
I have my health back, but have 6 more weeks of therapy to go. I am very weepy about all of the time it has taken, all that I have lost, but guess god gave this to me for some reason. My whole family for that matter.
I am going to be rather dismayed if in fact the stuff that could have cured me from this disease was sitting on a counter in a health food store this whole time.
I got Lymes in 2004. So did my 11 mos old daughter and my favorite dog Toto.


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/14/2008 7:43 PM (GMT -6)   
don't think i can afford envita. maybe i can get a job there?
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