One thing I have not been able to find is even a loose timeline for Lyme. Is there a general progression like arthritis symptoms usually come before cognitive? How long after the bite do you start to get ``late stage'' type symptoms? Do you have any good months or years where you have little to no symptoms? How quickly do different parts of the body become `involved'?
I ask because I am trying to decide if Lyme is something I want to pursue as a possible cause of my symptoms. Finding a LLMD will be unnecessarily expensive and time consuming if I don't really have Lyme.
I have been having symptoms for 11 years with no clear diagnosis, but I am wondering - if this really is Lyme -should be `worse' off by now then I am? I have large joint arthritis (with joint damage) that does not behave like arthritis in blood test or treatment. I also have had fasciculation twitching/tremors for the past three years. But I do not have the cognitive or extreme fatigue (I am somewhat fatigued but I feel that is due to depression which is due to feelings of helplessness in not finding a reason for my pain)
Thanks, LS
Posted by John S (Member # 19756) on :
It is different for everyone.
Posted by tiredmama (Member # 27504) on :
Really good questions, LS. I sort of feel the same way as you with thinking "shouldn't I be worse off than this?". I read some people's post and it just makes me feel more fortunate that I'm not, because some days I feel very hopeless.
I did go ahead an make an LLMD appt (and yes, extremely expensive) and will continually second-guess that decision, however, I feel bad enough to hold out hope for a DX and to finally figure this out. I too, have the severe arthritis pains, but have only been clinically diagnosed ,I guess is the term. Blood work doesn't show too much in that regard.
Anyway...I appreciate you posting as no doubt many people have the same questions. Good luck! Hope you are able to come to a comfortable decision soon.
Posted by onbam (Member # 23758) on :
I had cognitive symptoms a week after my bite, and arthritic over a year later.
Posted by dmc (Member # 5102) on :
It depends on the person's immune system, the strain of Bb, any co-infections, other underlying health issues, person's nutricional factors, any addictions (drugs, alcohol)...
So, there is no set "Lyme follows this timeline."
That is why only a LLMD understands the complexity of Lyme.
Posted by LightAtTheEnd (Member # 24065) on :
"Finding a LLMD will be unnecessarily expensive and time consuming if I don't really have Lyme."
NOT finding an LLMD if you DO have Lyme will be unimaginably more expensive and time consuming in the long run.
I have also wondered, why am I not worse? And why don't I have all the symptoms that other people have?
I got sick about 15 months ago. My symptoms have always been somewhat mild, and I have been able to continue working. From the beginning I had joint and muscle pain, fatigue, and periodic emotional symptoms. I have not really had cognitive problems, major twitching, night sweats, or lots of other things.
However, I made the mistake of thinking that because my symptoms were not too terrible, and I diagnosed myself and got treated pretty early, my Lyme would be easy to get rid of, which has not been the case.
I have made some definite improvement since I started treatment 10 weeks after my tick bite, but I still have most of the same symptoms I started with. My hip joint rarely ever bothers me any more, so that's one about gone, and my fatigue seems to be less severe than it used to be. The emotional stuff doesn't come back so much as it used to.
There are people who go along for years or decades, untreated, with a few symptoms they are able to live with, and then a sudden major stress in their lives causes them to suddenly crash and become bedridden, have major neuro symptoms, etc.
There are others who seem to have all the worst symptoms from the beginning.
It depends very much on how your immune system is functioning, which coinfections you have (and those may be dormant and then show themselves later), how much opportunistic infections are acting up (candida, EBV, etc.)
If untreated, Lyme may go in and out of remission and relapse multiple times or be better some years and worse in others, but it will not go away if untreated. The longer you go without proper treatment, the more chance it has to entrench itself all over your body.
There is no test that can tell you that you DON'T have Lyme, though a positive test can tell you that you do. The only way to rule out Lyme is to get the advice of an experienced LLMD. Sometimes it is simply difficult to tell which infections you have, and the best way to narrow it down is to try the treatment and see what happens.
Now I am grateful every day that I'm not worse, and hopeful that because I am on treatment and slowly improving, I will not get significantly worse in the future. If I can make it through this illness without losing my job, I will be very glad.
If I were in your position, I would run to a good LLMD as soon as possible.
Posted by Haley (Member # 22008) on :
Hi LS,
Not everyone has cognitive symptoms. I know many Lyme patients that don't have this symptom. It is my worst symptom.
Also, many people do not get as sick as others for many reasons as posted above.
I know someone that has had RA for many years. Her Rhuemi decided to test her for Lyme and she tested positive. She is now getting the proper treatment she needs. She feels 100% better.
If you are not suffering then maybe you don't feel that it is worth being tested. If you are in pain then get tested and see what an LLMD has to say.
Posted by kimmie (Member # 25547) on :
Different for everyone. I was bit the end of Novemember and Dec 1 the neuro symptoms started. Hospitalized in Jan & March for possible MS with brain lesions. Never had fatigue or joing issues.