Aa
Anyone know a LLMD in Minnesota
My story briefly: A year ago started having many wierd symptoms, some neurological. It was one new symptom after another. I'd get over one, just to get another. Had a brain and c-spine MRI, both clear. I was thinking MS, but GP said no. At my request, went to a neuro, also said no to MS. After several months, I went to a MS specialist, who said "NO" to MS. He said good MRI, passing neuro. test, and "story of my symptoms" rule out MS. Not sure what he meant about the story thing.
I had a normal ELISA test for Lyme, and neuro said it is very sensitive, and may give false positives, but not negatives. I was thinking that Lyme was unlikely, but not impossible for me. I have had "regular" tick bites nearly each spring, but no deer tick that I know of.
Many of my sx. have gone, but I am left with joint pain, muscle fatigue, muscle twitching, among some other random things. I was also dx. with carpal tunnel through nerve testing when all this came on. If I don't wear my wrist spints @ night, my hands go numb. That came out of nowhere, too. The docs have given me no answers, and I just can't give up on my health, so I would like to get the opinion of a LLMD. I don't know where to find one.
(Had lots of other blood tests, thyroid, RA, & many more - all normal)
On a side note, my brother works in the forests of northern MN and has been DX. with Lyme & treated. Since then he has had a "possible MS" dx. due to some lesions on his brain and symptoms. Could it be possible Lyme could be the culprit??
I had a normal ELISA test for Lyme, and neuro said it is very sensitive, and may give false positives, but not negatives. I was thinking that Lyme was unlikely, but not impossible for me. I have had "regular" tick bites nearly each spring, but no deer tick that I know of.
Many of my sx. have gone, but I am left with joint pain, muscle fatigue, muscle twitching, among some other random things. I was also dx. with carpal tunnel through nerve testing when all this came on. If I don't wear my wrist spints @ night, my hands go numb. That came out of nowhere, too. The docs have given me no answers, and I just can't give up on my health, so I would like to get the opinion of a LLMD. I don't know where to find one.
(Had lots of other blood tests, thyroid, RA, & many more - all normal)
On a side note, my brother works in the forests of northern MN and has been DX. with Lyme & treated. Since then he has had a "possible MS" dx. due to some lesions on his brain and symptoms. Could it be possible Lyme could be the culprit??
I also agree that both you and your brother need to go see an LLMD.
Testing is basically the opposite of what most doctors were taught. In reality, there are very few false positives, and lots of false negatives.
I also had MS - like symptoms and I have about 20 lesions, or little fuzzy white spots in my white matter on an MRI. Lyme is known to cause lesions in some people, but you can have plenty of neurological symptoms without getting the lesions. Given his prior history of Lyme, it is very possible that your brother was undertreated and still has an active infection.
I don't know any docs in your area, but I did find that a local Lyme support group was really helpful for me. They sent me two pages of names of area doctors who would diagnose or treat Lyme. Unfortunately, the only one in network did not prescribe IV abx, which I needed due to my CNS involvement. I ended up with an out of network doctor who I am very happy with. ILADS is a great source. You could also try your state's Lyme Disease association.
Don't be surprised if the most highly recommended docs don't take insurance. Many insurance companies have harrassed and terminated contracts with docs who aggressively treat Lyme. Working independently, they are free to treat as the patient needs it, not as an insurance company wants to pay.
I hope you find a good one! Keep us posted!
Testing is basically the opposite of what most doctors were taught. In reality, there are very few false positives, and lots of false negatives.
I also had MS - like symptoms and I have about 20 lesions, or little fuzzy white spots in my white matter on an MRI. Lyme is known to cause lesions in some people, but you can have plenty of neurological symptoms without getting the lesions. Given his prior history of Lyme, it is very possible that your brother was undertreated and still has an active infection.
I don't know any docs in your area, but I did find that a local Lyme support group was really helpful for me. They sent me two pages of names of area doctors who would diagnose or treat Lyme. Unfortunately, the only one in network did not prescribe IV abx, which I needed due to my CNS involvement. I ended up with an out of network doctor who I am very happy with. ILADS is a great source. You could also try your state's Lyme Disease association.
Don't be surprised if the most highly recommended docs don't take insurance. Many insurance companies have harrassed and terminated contracts with docs who aggressively treat Lyme. Working independently, they are free to treat as the patient needs it, not as an insurance company wants to pay.
I hope you find a good one! Keep us posted!
I was one of those who was told I had MS when in fact the lesions as they were called by the DR were from Lyme . Once I saw an LLMD she figured the whole mess out because I just don't understand how a regular DR can accept the fact that this woman can have 5 or 6 not common illnesses at the same time without being some sort of medical freak, I should have been written up in a medical journal since they didn't believe in Lyme as the culprit.
Hi,
Since we don't like to post info about LLMD's, I sent you a message through the MedHelp system. Click on the "inbox" link above when you are logged in.
Since we don't like to post info about LLMD's, I sent you a message through the MedHelp system. Click on the "inbox" link above when you are logged in.
Thanks so much for the information. I will try the avenues you have mentioned. Yes, I spent a lot of time on the anxiety forum when all this first came on. The GP who saw me thought that was my problem, and I wanted to believe that, but it was my symptoms that came before any anxiety. Mentally I have been pretty good lately, but still have these physical problems. And anxiety certainly wouldn't explain the carpal tunnel.
Yup, I'll post back when I have an answer.
Thanks again!!
Yup, I'll post back when I have an answer.
Thanks again!!
... and PS: I see you are also a member of the 'anxiety' forum here.
A significant symptom of Lyme can be ... anxiety.
Bingo.
Try magnesium supplements -- any variety ending in "-ate" is said to be most absorbable. I like a kind called Magnesium CAO, short for citrate, aspartate and orotate. Lyme bacteria use up magnesium in their reproductive process, which leads to twitching, muscle cramps and spasms, and poor sleep in Lyme patients.
A significant symptom of Lyme can be ... anxiety.
Bingo.
Try magnesium supplements -- any variety ending in "-ate" is said to be most absorbable. I like a kind called Magnesium CAO, short for citrate, aspartate and orotate. Lyme bacteria use up magnesium in their reproductive process, which leads to twitching, muscle cramps and spasms, and poor sleep in Lyme patients.
Welcome --
You give a good, coherent history. If you have copies of all the tests done so far, keep your own set and take copies to the Lyme doc you find. Past tests can be helpful in making a diagnosis.
Neurologists and infectious disease (ID) docs are generally blind to Lyme and other diseases carried by the same ticks. It's as though these docs are all looking at a rainbow but are unable to see the color yellow: it simply doesn't exist for them.
I went through 20 highly trained docs in various specialties before one finally diagnosed me with Lyme -- but she blew it off and said despite the positive test, I could not possibly have Lyme. So I've been through what you're going through, as are many others here. You are not alone.
The tests are not perfect, but worse news is that nonLyme docs read them oddly, just as my doc did, so it really takes a Lyme specialist.
The main voluntary organization for Lyme specialists (who can be of any discipline: internists, GPs, immunologists, etc., and even open-minded neurologists and ID docs) is ILADS, the Intl Lyme and Associated Diseases Society. They have a referral function -- send them an email to
contact [at] ILADS [dot] org
and tell them where you are located ("Minneapolis") or what areas you can travel to ("So. Minn. and Iowa") or whatever. They will send you back some names.
You can also just search online for
LLMD Minnesota
and see what pops up.
And yes, your brother probably needs to see an LLMD too. Just to be on the safe side. NonLLMDs don't treat very aggressively, and they often don't test for co-infections, which are other diseases the Lyme ticks also carry.
I'm not persuaded only one kind of tick (the teeny ones) carry Lyme; say a little tick bites a dog, a dog tick bites the dog and gets Lyme, the dog tick bites you. Et voila. There is also some thought that mosquitoes may carry Lyme+. After all: why not?
Lyme is the fastest spreading vector-borne disease (meaning carried by a bug etc.) in the US, but so-called mainstream medicine is all tied up in political knots swearing it's hard to get and easy to cure. They are wrong on both points.
About MS, some of our other posters here went through the 'it must be MS' routine with their docs, so they can speak more to the 'lesions' aspect. It was posted here recently that the white fuzzy spots in an MRI may indicate Lyme or MS, and the spots are not otherwise distinguishable -- the problem being that a doc who doesn't believe in Lyme is not likely to diagnose Lyme and is more likely to reach for a disease the doc believes in: MS. (Also note that there is a better test than an MRI to diagnose Lyme, called a SPECT scan, which indicates if blood flow is restricted from swelling caused by Lyme. An MRI will not show that, and so is not helpful in diagnosing Lyme.)
Not only does this produce a delay in treatment, but it often results in the wrong treatment being given. MS is an autoimmune disease and often treated with steroids to suppress the immune system; that is exactly the wrong thing to do for an infectious disease like Lyme: your immune system needs to be up and fighting, not suppressed.
There are other twists and turns in all this, but I'll leave it there for now. When you find an LLMD you are happy with, then talk to your brother about making an appointment too. It's what I would do.
Best wishes to you and your brother -- let us know how you do, okay?
You give a good, coherent history. If you have copies of all the tests done so far, keep your own set and take copies to the Lyme doc you find. Past tests can be helpful in making a diagnosis.
Neurologists and infectious disease (ID) docs are generally blind to Lyme and other diseases carried by the same ticks. It's as though these docs are all looking at a rainbow but are unable to see the color yellow: it simply doesn't exist for them.
I went through 20 highly trained docs in various specialties before one finally diagnosed me with Lyme -- but she blew it off and said despite the positive test, I could not possibly have Lyme. So I've been through what you're going through, as are many others here. You are not alone.
The tests are not perfect, but worse news is that nonLyme docs read them oddly, just as my doc did, so it really takes a Lyme specialist.
The main voluntary organization for Lyme specialists (who can be of any discipline: internists, GPs, immunologists, etc., and even open-minded neurologists and ID docs) is ILADS, the Intl Lyme and Associated Diseases Society. They have a referral function -- send them an email to
contact [at] ILADS [dot] org
and tell them where you are located ("Minneapolis") or what areas you can travel to ("So. Minn. and Iowa") or whatever. They will send you back some names.
You can also just search online for
LLMD Minnesota
and see what pops up.
And yes, your brother probably needs to see an LLMD too. Just to be on the safe side. NonLLMDs don't treat very aggressively, and they often don't test for co-infections, which are other diseases the Lyme ticks also carry.
I'm not persuaded only one kind of tick (the teeny ones) carry Lyme; say a little tick bites a dog, a dog tick bites the dog and gets Lyme, the dog tick bites you. Et voila. There is also some thought that mosquitoes may carry Lyme+. After all: why not?
Lyme is the fastest spreading vector-borne disease (meaning carried by a bug etc.) in the US, but so-called mainstream medicine is all tied up in political knots swearing it's hard to get and easy to cure. They are wrong on both points.
About MS, some of our other posters here went through the 'it must be MS' routine with their docs, so they can speak more to the 'lesions' aspect. It was posted here recently that the white fuzzy spots in an MRI may indicate Lyme or MS, and the spots are not otherwise distinguishable -- the problem being that a doc who doesn't believe in Lyme is not likely to diagnose Lyme and is more likely to reach for a disease the doc believes in: MS. (Also note that there is a better test than an MRI to diagnose Lyme, called a SPECT scan, which indicates if blood flow is restricted from swelling caused by Lyme. An MRI will not show that, and so is not helpful in diagnosing Lyme.)
Not only does this produce a delay in treatment, but it often results in the wrong treatment being given. MS is an autoimmune disease and often treated with steroids to suppress the immune system; that is exactly the wrong thing to do for an infectious disease like Lyme: your immune system needs to be up and fighting, not suppressed.
There are other twists and turns in all this, but I'll leave it there for now. When you find an LLMD you are happy with, then talk to your brother about making an appointment too. It's what I would do.
Best wishes to you and your brother -- let us know how you do, okay?
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