This is topic Newbie Q's - Is there any hope? in forum Medical Questions at LymeNet Flash.


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Posted by Lynette (Member # 5993) on :
 
While reading Cave76's post re: Samento, I wondered how long each of you
have suffered with LD, before and after diagnosis?

Is there a standard starting treatment protocol? How long does that last?

Of those who claim remission or cure, how long did they undergo treatment
before they felt better?

Is there any commonality to their successful treatments?

How do I know that the LLMD I am referred to will have knowledge to treat
LD sufficiently?

Too many questions, sorry about that. We don't even have definite
diagnosis but the symptoms page could have been written by me, describing
my husband's experience. Thanks ahead of time.
 


Posted by graneet (Member # 3112) on :
 
lynette.
Absolutely there is hope.
how long have you been sick?
Did you find a tick or bullseye rash?

That said it dont mean you dont have lyme. I live in ohio and most people go to the two popular docs in hermitage. I have been to both but i have chose to go to Dr C in mo and im very satisfied. He treats everything and stays up to date. To me its worth the trip. However if you cant go there then try the other two which ever you prefer.

Some have got well after two year treatment. A lot depends on how long you have had lyme and or if your infected with co infections. As well as your health age and system.

If just bit and get proper treatment then you will get well quick. Others take longer. As well as there are some of us who as in my case didnt get dx for two years and im still battling with it seven years later. Neither of the two docs would treat babs i have no idea why but now i am getting treated and already see a tiny bit of difference.

Having hope you will get well is what gets you threw this.

Graneet
 


Posted by kam (Member # 3410) on :
 
There will be others who will have lots of information for you.

But to keep it simple, I would suggest you see a LLMD that is a member of ILADS.

This is a group of lyme literate MD's.

If you post here for a doc, contact the Lyme Disease Association and possibly Igenex Lab, you will notice that the same docs will be mentioned.

This will help you narrow your search for a LLMD in your area and assure you that the doctor knows how to dx and treat lyme disease.

It may take time to get in to see the doc so this would be my first step.

The other questions can be answered while you are waiting for the appointment.

KAM

Dx Feb/2003

one year abx

Currently on my 9th week of IV Rocephin

Became unable to work or do routine household chores seemingly overnight in Oct. 2001.

Have very limited budget so doing what I can when I can to improve health.

Had lyme symptoms since mid 84's but was able to work, go to college, etc. Symptoms did not stop me in my tracks until Oct. 2001.

I believe there is a missing piece of the puzzle with me as others came down sick at work with the same bizarre symptoms. We were all given different dx's.

[This message has been edited by kam (edited 31 July 2004).]
 


Posted by lymiecanuck on :
 
From everything I have learned - early treatment shows the best outcome.

Struggle to get treatment and be taken seriously is another major problem which most have experienced on a continous basis. That's why everyone says, don't waste time and see an LLMD.

Not taking everyhing else into account, such as co-infections, yeast issues, metals, allergies, hidden food allergies etc.

Everyone seems to respond differntly to treatment. Some need longer than others. Some have had lyme longer than they orignally thought, like myself.

Postive attitude and family support can make a huge difference, and money is a big issue as this is an expensive disease to treat.

Get to an LLMD and don't waste time with family doctor unless he knows his stuff and has experience treating lyme and will address co-infections etc.

Good Luck
Lymiecanuck
 


Posted by Lynette (Member # 5993) on :
 
Actually, it's my husband who is ill. He woke up in Jan. 4, 2004 with a back ache. Three days later he was unable to walk. He hasn't been able to work since. We have a family hobby of hiking and were in Lyme territory last July 4, 2003. We hiked and I did take a tick off of him, but no obvious bite. No symptoms immediately, although he did have increasing lack of range of motion and tingling in his extremities. Neck stiffness which was new to his previous back injuries.

He is now on Doxy starting his fourth week. Seems like some symptom improvement but emotionally more stressed recently. Thanks for your feedback.

quote:
Originally posted by graneet:
lynette.
Absolutely there is hope.
how long have you been sick?
Did you find a tick or bullseye rash?

That said it dont mean you dont have lyme. I live in ohio and most people go to the two popular docs in hermitage. I have been to both but i have chose to go to Dr C in mo and im very satisfied. He treats everything and stays up to date. To me its worth the trip. However if you cant go there then try the other two which ever you prefer.

Some have got well after two year treatment. A lot depends on how long you have had lyme and or if your infected with co infections. As well as your health age and system.

If just bit and get proper treatment then you will get well quick. Others take longer. As well as there are some of us who as in my case didnt get dx for two years and im still battling with it seven years later. Neither of the two docs would treat babs i have no idea why but now i am getting treated and already see a tiny bit of difference.

Having hope you will get well is what gets you threw this.

Graneet



 


Posted by suki444 (Member # 18960) on :
 
hi Lynette

i agree the best idea is to seek out an llads doc who is experienced in treating Lyme and it's co-infections.

I have a 15 yr old infection and started treatment just over a year ago...after 4months I was no longer bedbound and now a year on am working part time.

I travel to the U.S. every 6 months or so to see Dr B. - for me the improvement came when my co-infections of Babesia and Bartonella were diagnosed and treated.
Many people do not improve until their co-infections are treated.

If you post in Seeking a Doctor others can advise who is nearby and experienced. The must be a member of Ilads and it is good to ask for feedback from other patients.

Ilads doctors generall use things like a CD57 blood count to assess your response to treatment though it can take years...it's individual but you will probably feel better pretty quick if properly treated.

hope this helps - there is hope!!!
Emma

 


Posted by Kara Tyson (Member # 939) on :
 
1 year without any treatment. 4 1/2 years of treatment. I truly believe that I am done with it. Gone. Finished.

I think most people start with oral antibiotics. Some go on to IV medications.

If someone here referred a Dr. you can be pretty sure that they know Lyme. If you go to your yellow pages and pick out an Infectious Disease Dr. you are just about always going to get someone who knows hardly anything about Lyme (and what they do know is wrong).


 


Posted by graneet (Member # 3112) on :
 
your hubby will feel worse before you will see improvement. There is a post from tincup on newbie info It will explain a lot of details such as herx etc. Just DONT STOP if he has been sick for a year it will take a while on meds. Check for coinfections to.

Graneet
 


Posted by rosesisland2000 (Member # 2001) on :
 
Lynette, I just love that name. Anyway, welcome to LymeNet and the more you study and learn about this very complicated disease the better you AND your husband will be.

It's complicated and Tincup the sweetie of all sweeties, has put together in one post a great start for someone as yourself.

Just click this link and you'll be taken to right to it. It is very important and will help you greatly to get a grasp on what you will be needing to deal with.

Tincup's post Links for New LymeNet Members:


http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Best to you,


Rosemary
 


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