Hi- I posted the other day about MS and Lyme but no one ever answered my question. If I were to go to an MS specialist, should I be totally open and honest and tell her I have Lyme. I ask that because I don't know if that would sway her from looking into it more in depth and as a result, would chuck all of my symptoms up to Lyme-which could totally be the case. I just want an objective evaluation.
Posted by elara (Member # 41819) on :
The majority of neurologists will only consider Lyme if you have a CDC positive test report from a reference lab.
If you have a CDC positive, the neurologist might just send you to an ID doctor. If you say its Lyme based on anything but CDC positive, you will probably be dismissed.
Unless you know this neurologist is open to considering Lyme with less than a full CDC positive from a reference lab, I would let the MS neurologist make a diagnosis based on you input without declaring its Lyme.
You could wait till the end of the evaluation and then ask if Lyme was possible and see what opinion you get. If you are told no out of hand, you are seeing the wrong doctor.
If the neurologist accepts Lyme as a possibility at the end, you will likely get tested by their favorite Lab like Quest.
A lot depends on what evidence you have its Lyme. What evidence do you have and why are you seeing an MS neurologist? They typically diagnose MS based on an MRI and certain specific neurological symptoms common in MS.
If you believe its Lyme, then why are you seeing an MS specialist?
If you are questioning the Lyme diagnosis, then let the MS diagnosis proceed without biasing the doctor. I've brought up Lyme twice to neurologists and that was the end of their interest. So its risky depending on their beliefs.
Maybe you could say more about why you feel its Lyme and why you are looking into MS?
Its tricky. If you get diagnosed with MS, the medications used suppress the immune system because MS is considered an autoimmune disease but its not been proven.
So if you get an MS diagnosis and really have an infection of any type, the medications are the opposite of what you need.
I suspect Lyme and MS occur simultaneously occasionally due to the rates of each.
So I would want to return to the Lyme question and say why you suspect Lyme. Have you had a thorough differential diagnosis excluding other possibilities?
Have you had a brain MRI or SPECT and if so, what did they show?
Could you say exactly how the original Lyme diagnosis was reached and what about co-infections.
It sounds like yo are going back to ground zero and seeing what doctors find. I would not tell them its Lyme if they are mainstream doctors. That can blow up. Just let them do their thing.
There are new theories such as persisters combined with biofilms that would explain why years of ABX might notwork. There is also lots of new research on Lyme diagnostics that might help.
Posted by Keebler (Member # 12673) on :
- 99.9% of "MS specialists" (neurologists) know zero about lyme - so they are not going to be attributing ANY symptoms at all to lyme.
What they think they know about lyme, however - and all they choose to ignore - can ruin a patient's life.
Cpn and mycoplasmas, as well as other tick-borne infections also need to be considered but neurologists just don't concern themselves with the damage that these kinds of chronic stealth infections can do.
Cpn and other stealth infections in the thread below. A good LLMD or LL ND will know all about those, too. -
Posted by Keebler (Member # 12673) on :
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.
MTHFR / methylation matters also need to be considered as does porphyria. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler:
99.9% of "MS specialists" (neurologists) know zero about lyme - so they are not going to be attributing ANY symptoms at all to lyme.
What they think they know about lyme, however - and all they choose to ignore - can ruin a patient's life.
-
You can tell them if you want to .. it won't make much difference since they won't take it seriously. They will just set you on the path to MS and never look back.
Remember that there is NO DEFINITIVE test for MS .. it is a diagnosis of exclusion.
Many tests that are used to "diagnose" it could also show positive if you have Lyme .. One example would be the presence of lesions on the brain.
Posted by jo3 (Member # 6317) on :
Ok so I did go to the neurologist after all but did not tell her about the Lyme. She did do a lot of blood work and a Lyme Panel was included. That gives me hope that she is at least, open to the existence of Lyme and how it can mirror MS.
Posted by Lymetoo (Member # 743) on :
Which lab?
Keep us posted.
Posted by jo3 (Member # 6317) on :
Lymetoo- I didn't know that you were in Houston- look at that- I thought Lyme didn't exist in Tx!! That's what I've been told- HA! It was just Quest-not IGENEX- but I figure at least she's recognizing the fact that it exists. Right?