I'n new here. I need help please

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hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 11/20/2008 7:13 AM (GMT -6)   
Hi,
I'm new here, and my Engish is not very well, so I'm sorry about this.
 
14 months ago I had 2 Lyme tests, one is positive, one is negative. But the second doctor told me don't worry it's not Lyme, so I tried not to think about it.
 
I write my story in short:
- 5 years ago, I noticed I had a lot of small red rashes in my boby. I went many dermatologist, I tried many creams but nothing     helped.
- 4-4.5 years ago everytime I was so tired, but at nights I couldn't sleep. Also I was very sensitive to lights. After these things I felt I'm very depressed. I started to get bad anxiety, and I remember 3 years ago, I couldn't sit at the table with my family to have lunch. Since that I'm still not able to stay at a place for longer.
Also, at this time, when my anxiety went so high I got some panics. It was so weird, I didn't know it was panic, the doctor told me and gave me xanax. I took them for half year, and stopped(2,5 yeasr ago), because I needed more and more. 
2 years ago I was so bad, that I couldn't go to work anymore. My brain became foggy, I started to have neck and back pain, my vision is like I use sunglasses. Since that I live in derealization. I lost all my feelings, I'm not able to feel happyness.I had many EKG because my heart is running sometimes.
In the last 2 years sometimes I had to take Blood Pressure meds. I'm always very tired and my fever is 37.3-37.8 everyday. 
- So about 1 year ago I had these 2 tests.
- In the last 5 years I'm worse and worse, especially in the last 2 years.
Now, my short term memory, cognitive skills and derealization are terrible. And about 3 months ago I became numb from head to feet: I don't feel my skin on my head and my body. Also I lost about 50% of my hair. I had to move to my parents, I'm not able to go out to shop or to make food...
 
So now I don't know what to think. It's really hard to go out, I'm not able to handle small stress.
Before I travelled a lot, I had a lot of friends, and I'm sure it's not only depression as my family doctor always said.
 
I wrote my story because I would like to ask you, that do you think it can be LD? confused
Is it possible that average blood test that family doctor do is OK, but I have LD? confused   
 

hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 11/20/2008 7:24 AM (GMT -6)   
Also, I would like to add: I feel I lost my personality.
And I have a lot of electricity feelings.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/20/2008 1:12 PM (GMT -6)   

To answer both your questions:

1. Yes

2. Yes

Please read the Newbies tread at the top of page!!

You need to find a LLMD....Lyme literate medical doctor.



Here is my story:
http://community.thelymelight.com/profile/Brandon

Post Edited (anoyed) : 11/20/2008 12:40:24 PM (GMT-7)


masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 11/20/2008 1:37 PM (GMT -6)   
I agree, you need to find an LLMD to treat your Lyme. Good Luck, Bev

LymeinMD
New Member


Date Joined Nov 2008
Total Posts : 19
   Posted 11/20/2008 1:56 PM (GMT -6)   
I'm so sorry that you're having this struggle. I had escalating symptoms for ~ 5 years and ended up incapacitated at home for 1.5 years before anyone even mentioned Lyme, and even then I was the one that did the research and asked the questions that got me to a LLMD--my doctors, though well meaning, were clueless. Treatment is not easy or instantaneous, but it will be an amazing relief for you to see a LLMD and talk to someone who understands your situation. I'm still sick, but things are slowly getting better and I've been able to return to work (have been under treatment for 3 years). I just found this forum a week ago and already it's been a blessing. Hang in there!

hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 11/21/2008 6:39 AM (GMT -6)   
I thank you for answers.

LymeinMD,
Can I ask you why you said treatment is not easy? I just ask this because now I very very tired and my nervous system is soo weak. For example, I can't take herbs or drink alcohol or coffein. When I get a little stress, I feel electricity in my head and body, and also I'm very close to faint :(
You said: you have been treatment for 3 years. That's a long time... could you tell me why you are still sick? What symptoms do you still have? And after how long treatment could you go back to work?

I called a Lyme doctor, and I have an appointment on Tuesday. My parents will take me there, and I hope I'll have enough strength.

hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 11/21/2008 6:58 AM (GMT -6)   
One year ago my positive test was this:
Unfortunately I can't understand what does it mean.
I hope somebody can help me to understand.

IgM IgG
p100 (4) (8) B.afzelii
VIsE (3) (4) VIsE
p41 (1) ++ (1) Flagellin:B.burgdorferi sensu stricto
BmpA (3) +/- (8) B.afzelii
OspA (4) (4) Surface protein: B.afzelii
OspC (8) (6) Surface protein: B.b.s.s.,B.garinii,B.afzelii
p41/intern(PBi) (3) (1) Specific part of Flagellin:B.garinii
p41/intern(PKo) (1) (1) Specific part of Flagellin:B.afzelii
p18 (4) (8) Surface protein:B.afzelii

(<5negative, 5-6.... ,>6positive)

hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 11/21/2008 7:02 AM (GMT -6)   
...................IgM............ IgG
p100.................(4).......... (8) B.afzelii
VIsE.................(3)........... (4) VIsE
p41...................(1)......++ (1) Flagellin:B.burgdorferi sensu stricto
BmpA................(3)..... +/- (8) B.afzelii
OspA.................(4)........... (4) Surface protein: B.afzelii
OspC.................(8)........... (6) Surface protein: B.b.s.s.,B.garinii,B.afzelii
p41/intern(PBi).. (3)........... (1) Specific part of Flagellin:B.garinii
p41/intern(PKo).. (1)........... (1) Specific part of Flagellin:B.afzelii
p18.................... (4).......... (8) Surface protein:B.afzelii

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/22/2008 9:52 PM (GMT -6)   
hope 29
Your English sounds really good to me. What is your first language? What lab did you get your blood test done?
You got a positive and that should be good enough for you at your new Dr. Most people never get the positive and waste so much time searching for answers. So that is good news.
Your new Dr. will be able to tell you if you only have Lyme and if you got anything else in that same bug bite.
Your symptoms all sound just like mine. It is scary to see your life just go away and not to be able to do the simple things that you use to be able to do. I feel for you. It is hard. The good thing is that you have a loving family to help you. That is a blessing.
And now it sounds like you are on the right track with the right kind of Dr. If he does not work for you...keep going till you find the right one for you.
What people are trying to say to you, is that it is a process. There is not one answer for the treatment of lyme that fits everyone. It effects everyone differently.
It may help to get a phyciatrist to help with the depression. Only because it is hard to push forward and be assertive about your recovery if you cannot get out of bed.
I love Cymbalta for the pain and the tiredness and for the blues. But for everyone it is different.
Your whole system has changed and alcohol and coffee will effect you differently. So try to eat healthy and also get something to help you sleep. Get the book the "cure Unknown" it is not a happy book. But it will show you the problems that lay ahead of and the struggles. and may help you to understand that you are going to have to be aggressive about your recovery. Very aggressive. So try to get some medicines that can help you function, we all need some help. You can chat with so many people here about what drugs to take for what and what works for who....everyone is very different. So get started.
best to you....
marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/22/2008 9:55 PM (GMT -6)   
Hope you can tap on the letter picture of my post and ask me anything. i would be more that happy to help you any way that I can. No question is dumb. It is a tough battle that you have ahead of you. It is a great idea to look at the beginning of the forum and look to see what books you can buy. Get a book or two. So that you can get many answers.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 12/2/2008 9:14 AM (GMT -6)   
My Lyme doctor told me, he doesn't think I have LD according to my symptoms. But he did the test. Now I have to wait for the result...

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/2/2008 11:36 AM (GMT -6)   
Not to belittle your story, but your story sounds like all the other lyme stories i've read. Are you sure this is a lyme educated dr?
 
Almost all of your symptoms point towards lyme and co-infections. And i'm suprised you don't sweat at night.
 
Anxiety, depression, insomnia, numbness, tingling, hair loss, brain fog, fatigue, photo sensitivity, blood pressure???, ekg? neck pain, back pain, cognitive deficits.
 
Wow, if i was your dr, i'd treat you on symptoms alone and see how you respond to antibiotics.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/2/2008 3:30 PM (GMT -6)   
hope_29
You will hear those words all day everyday from Dr.s "I don't think you have Lyme"
If I had a dollar for every time I heard that one. Even with the darn tick in my hand....with my daughter running a 106 fever.
Tell them you understand their thoughts, but that you have every single symptom in the Lyme book, as you are classic darling.

Get another Dr. if he chooses not to listen to you. You don't have time to educate him...or beg for treatment.

Dump him and move on. Next!
It is a process...a process of finding a Dr. who actually keeps up with all of the new information out about Lyme.

Hang in there...and be aggressive. Don't take "no" for an answer!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 12/3/2008 2:52 AM (GMT -6)   
I really thank you for answers.
My numbness is terrible. All my head and spine-line are numb. And the other parts of my body is half numb.

phsinvent,
I have sweating, for a few months I noticed my foot is always wet.
Why do ask about 'night sweat'? for me, I have sweating at daytime too :(

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/3/2008 9:41 AM (GMT -6)   
Sounds like you have even more symptoms than you origninally listed. Well i would say it is depression if you just had depression. But for a dr to say it is just depression when you have night sweats, rashes and numbness etc is just plain stupid. Just do not let these dr's dictate your future. You have far too many symptoms that indicate there is something going on with your nervous system. If you didn't work in a factory that made mercury then i'd say there is some type of infection. But you also have the light sensitivity and the dreaded insomnia that so many of us here can relate with. I'd start with a dr that understands lyme and go from there.

snake1979
Regular Member


Date Joined Apr 2008
Total Posts : 282
   Posted 12/4/2008 1:01 AM (GMT -6)   

Hope -

  • Where are you located?  We need to find you an LLMD...like right now!
  • Do you take Garlic supplementation? 
  • Are you on any antibiotics?
  • You need to get a Western Blot test and have it read by a LLMD.
  • You need a complete blood workup.
  • You need to be checked for all the co-infections of Lyme or tick borne infections....Toxoplasmosis, Ehrlichia, Lyme, Bartonella, Babesia and there are a few others.

It is essential to get help fast.  I had most of the symptoms you had and most people here do.  You can get your life back, but you need to get help fast.  This is a great website and many people here are willing to help.  Ask us any questions that you have and we will try to help the best we can.


hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 12/12/2008 8:09 AM (GMT -6)   
I really thank you for answers. I really need help. In the last few weeks I had a lot of pain in my arms and heart.
The doctor, who did Lyme test is the best Lyme doctor in my country, and he said it's negative, so now I don't know where to go.
But my memory is terrible, worse than few weeks ago.

snake1979,
I'm in Hungary. I don't take Garlic supplementation, please tell me why do you ask this? Shoul I take it?
I don't take any antibiotics. Actually my nervous system is very sensitive, for example, I'm not able to take herbs or drink alcohol or coffein.
I had a Western Blot test, and it came back Negative, so I really don't know what should I do.
I had a complete blood workup, and it was OK, I remember they checked my liver too. So that's why, when I go to doctors, they want to send me to psychiatry :(
I would like to check these things (Toxoplasmosis, Ehrlichia, Bartonella, Babesia).Could you tell me what kind of doctor can do these test?

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/12/2008 10:57 AM (GMT -6)   
Could you list all of your symptoms, even if some of them sound strange? And when you say you are sensitive to antibiotics, what happens when you take an antibiotic? Do you own any cats or did you ever live around cats?

hope_29
Regular Member


Date Joined Nov 2008
Total Posts : 90
   Posted 1/29/2009 10:55 AM (GMT -6)   
I have a question.
My western blot test is negative, but I'm not good. I went to the best LD doctor in my country. He is sure I have NO LD.
Do you think, western blot test can give false result??

I'm at home all the time, my derealization is very strong, and my cognitive and memory skills are terrible. All my body is numb, the worst part is my head. Also, I have no emotions. And I have fever everyday. I'm afraid I won't be able to dress or tell my name soon.
If it is not Lyme, what other disease can be?

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/29/2009 11:48 AM (GMT -6)   
Did you have those other co-infections tested for? Like bartonella or babesia? The tests are horrible for these bugs too. To answer your question about tests giving false results-yes! Too many strands of the bugs and your immune system is so messed up some tests are worthless. The best kind of test for bart or babs would be the ones where they look under a microscope and actually look at your red blood cells. If it is one of these quite possibly simple blood tests would show low platelets or high liver enzymes showing you are dealing with an infection.

I am sorry you are having a hard time getting a doctor to help you. Do you have anyone helping you seek out a doctor that could help?

susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 1/29/2009 12:27 PM (GMT -6)   
Hi hope_29,

Like seeingstarts said....YES, the western blot is pretty much useless, especially after you've had Lyme for so long (5 years?). Your story is so sad and unfortunately all too common. I'm so sorry your Dr. still says you don't have Lyme after all your classic symptoms...I've had all of those at one time or another. The memory problems are rough...and the insomnia. And the fatigue. Ugh. That has been the worst for me.

That your Dr. says it's not Lyme is incredibly frustrating! And you even had a positive test. I wonder if you could find an open-minded Dr. That will give you antibiotics. If your Dr. is the best for Lyme in Hungary that is a sad, sad thing. Do you have family/friends in the States that you could visit and see a Dr. here?

I wish I could help!

Susan
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