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#1 regentrude

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Posted 13 January 2018 - 10:33 AM

I know several of you here are very Lyme educated, so maybe you can help.

 

My dad has been suffering from unclear neurological symptoms that impair his ability to walk.  The neurologist ordered MRTs, and the results show that he does not have any  of the neurological conditions they feared. The family practitioner is nice but seems clueless. They are investigating diabetes now. I talked to him this morning and asked whether anybody had ever tested for Lyme borreliosis, and he did not think so.

My parents live on a wooded property. As children, we had ticks daily. My mom had been diagnosed with, and successfully treated for, Lyme many years ago. Even though Dad does not spend much time outside, I think it is a possibility, and recommended that he bring up the possibility with his doctor and insist on testing. What exactly should he be asking to have tested? or am I off base and Lyme would not cause his symptoms (weakness, coordination problems, inability to execute movement, but no acute pain)?

Thanks

 



#2 Chrysalis Academy

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Posted 13 January 2018 - 10:43 AM

I'm guessing Parkinson's has been ruled out? That would be my first hypothesis just based on the few symptoms you mention. Particularly "inability to execute movement" which is strongly associated with damage/lesions to the basal ganglia such as are found in Parkinson's.

 

Does he have joint pain? One of the hallmarks of Lyme is joint, muscle, and/or nerve pain that travels from joint to joint - so it isn't constant, and it isn't always in the same joint. But in the absence of any joint, muscle, or nerve pain, again Lyme wouldn't be my first guess.

 

I think it's worth asking for Lyme testing, but the tests have an extremely high false negative rate - they are not very sensitive. So if the test were positive, that could be helpful but a negative test wouldn't convince me. The test you'd want to get would be the Western Blot test through IgeneX, or one of their newer antibody tests, rather than the more traditional EIA or ELISA, which are essentially worthless IMO.


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#3 regentrude

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Posted 13 January 2018 - 10:52 AM

I'm guessing Parkinson's has been ruled out? That would be my first hypothesis just based on the few symptoms you mention. Particularly "inability to execute movement" which is strongly associated with damage/lesions to the basal ganglia such as are found in Parkinson's.

 

Does he have joint pain? One of the hallmarks of Lyme is joint, muscle, and/or nerve pain that travels from joint to joint - so it isn't constant, and it isn't always in the same joint. But in the absence of any joint, muscle, or nerve pain, again Lyme wouldn't be my first guess.

 

I think it's worth asking for Lyme testing, but the tests have an extremely high false negative rate - they are not very sensitive. So if the test were positive, that could be helpful but a negative test wouldn't convince me. The test you'd want to get would be the Western Blot test through IgeneX, or one of their newer antibody tests, rather than the more traditional EIA or ELISA, which are essentially worthless IMO.

 

Thanks.

Since the neurologist examined him, ordered tests, and did not find any indication of any nerve disease, I take this to mean that Parkinson's has been ruled out. I would assume a neurologist would be able to diagnose Parkinson's, since this would be an obvious candidate.

No joint pain. Sometimes back pain.

 

He had some hand problems for the past few years, nerve pain, difficulty grasping. But accompanied with swelling. (My mom's lyme presented in her hands, pain and swelling, which was especially problematic since she had to play the piano for  her job as a voice professor. But it looked different).They treated Dad for carpal tunnel. But I am wondering whether this may not have been related to his current symptoms.

Grasping at straws here. I am not a doctor, and  the doctors seem stumped.


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#4 Chrysalis Academy

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Posted 13 January 2018 - 10:54 AM

Thanks.

Since the neurologist examined him, ordered tests, and did not find any indication of any nerve disease, I take this to mean that Parkinson's has been ruled out. I would assume a neurologist would be able to diagnose Parkinson's, since this would be an obvious candidate.

No joint pain. Sometimes back pain.

 

He had some hand problems for the past few years, nerve pain, difficulty grasping. But accompanied with swelling. (My mom's lyme presented in her hands, pain and swelling, which was especially problematic since she had to play the piano for  her job as a voice professor. But it looked different).They treated Dad for carpal tunnel. But I am wondering whether this may not have been related to his current symptoms.

Grasping at straws here. I am not a doctor, and  the doctors seem stumped.

 

I certainly empathize with the bolded. I hope you can get some answers.


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#5 BlsdMama

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Posted 13 January 2018 - 11:01 AM

I know several of you here are very Lyme educated, so maybe you can help.

 

My dad has been suffering from unclear neurological symptoms that impair his ability to walk.  The neurologist ordered MRTs, and the results show that he does not have any  of the neurological conditions they feared. The family practitioner is nice but seems clueless. They are investigating diabetes now. I talked to him this morning and asked whether anybody had ever tested for Lyme borreliosis, and he did not think so.

My parents live on a wooded property. As children, we had ticks daily. My mom had been diagnosed with, and successfully treated for, Lyme many years ago. Even though Dad does not spend much time outside, I think it is a possibility, and recommended that he bring up the possibility with his doctor and insist on testing. What exactly should he be asking to have tested? or am I off base and Lyme would not cause his symptoms (weakness, coordination problems, inability to execute movement, but no acute pain)?

Thanks

Wow.

 

Sounds like your dad is me. :(

I have clinical weakness.  This is different than feeling weak.  For example, if you have clinical weakness, you have an inability to execute a function.  It might be unable to button buttons.  It might be (in my case) the ability to walk without your toes not lifting.  It's called drop foot and it means my toes don't lift, but droop, when I take a step.

Coordination problems - balance?  I think you might be talking about an ataxic gait.  

 

Okay, so your dad is, unfortunately in the chasm.  I have a clear MRI.  It showed three minor lesions that could be attributed to age.  I have three neuros that think it's normal (for age) and one that thinks it looks like MS.  Multiple Sclerosis has been ruled out which is probably what they were looking at in your dad.  

He needs to see a neurologist.  Your practitioner can refer him.  He's going to end up with a lumbar puncture, a number of tests on his blood and on his spinal fluid.  He will probably get an EMG if the lumbar puncture shows no Lyme and no oligclonal bands.  By far, MS is the most common thing here.  

Now, in the realm of Lyme.  I think Lyme was the "first domino" in my health problems.  I have a positive Lyme test from Igenex.  (Very controversial.) I also have a small quanitity of Lyme found in my spinal fluid but not high enough to "count" positive.  The Western Blot is a mess of epic proportions.  In the 90s they removed bands 31 and 34 because they had made a Lyme vax (that made a lot of people very sick and there is currently a class action suit.)  But 31 and 34 are highly specific to Lyme.  Those of us who test positive for 31 & 34 (through Igenex) have Lyme but because they've been removed by the CDC we don't test positive on the current traditionally accepted tests.  It really is a mess.

Currently I have two working diagnoses.  The first is Primary Lateral Sclerosis, have passed three EMGs,  and the second diagnosis is Stiff Person Syndrome - Glycine Receptor Positive (meaning PERM.)

I really thought they(Mayo) were crazy with SPS.  But I have been off my IVIG for almost three weeks now and I am a mess and declining rapidly with balance and gait.  It makes me think Mayo is on to something.  

I also have no pain.


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#6 eagleynne

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Posted 13 January 2018 - 11:22 AM

It does sound like Parkinson's based on what you've said. If they have ruled that out, maybe ask if they tested him for Normal Pressure Hydrocephalus. It presents very similarly to Parkinson's, but with gradually appearing signs of dementia, a bit like the gradual onset of Alzheimer's. But unlike Parkinson's or Alzheimer's it can be treated.



#7 regentrude

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Posted 13 January 2018 - 11:24 AM

It does sound like Parkinson's based on what you've said. If they have ruled that out, maybe ask if they tested him for Normal Pressure Hydrocephalus. It presents very similarly to Parkinson's, but with gradually appearing signs of dementia, a bit like the gradual onset of Alzheimer's. But unlike Parkinson's or Alzheimer's it can be treated.

 

Excluded.  MRT and CT are normal.



#8 regentrude

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Posted 13 January 2018 - 11:31 AM

Wow.

 

Sounds like your dad is me. :(

I have clinical weakness.  This is different than feeling weak.  For example, if you have clinical weakness, you have an inability to execute a function.  It might be unable to button buttons.  It might be (in my case) the ability to walk without your toes not lifting.  It's called drop foot and it means my toes don't lift, but droop, when I take a step.

Coordination problems - balance?  I think you might be talking about an ataxic gait.  

 

Okay, so your dad is, unfortunately in the chasm.  I have a clear MRI.  It showed three minor lesions that could be attributed to age.  I have three neuros that think it's normal (for age) and one that thinks it looks like MS.  Multiple Sclerosis has been ruled out which is probably what they were looking at in your dad.  

He needs to see a neurologist.  Your practitioner can refer him.  He's going to end up with a lumbar puncture, a number of tests on his blood and on his spinal fluid.  He will probably get an EMG if the lumbar puncture shows no Lyme and no oligclonal bands.  By far, MS is the most common thing here.  

Now, in the realm of Lyme.  I think Lyme was the "first domino" in my health problems.  I have a positive Lyme test from Igenex.  (Very controversial.) I also have a small quanitity of Lyme found in my spinal fluid but not high enough to "count" positive.  The Western Blot is a mess of epic proportions.  In the 90s they removed bands 31 and 34 because they had made a Lyme vax (that made a lot of people very sick and there is currently a class action suit.)  But 31 and 34 are highly specific to Lyme.  Those of us who test positive for 31 & 34 (through Igenex) have Lyme but because they've been removed by the CDC we don't test positive on the current traditionally accepted tests.  It really is a mess.

Currently I have two working diagnoses.  The first is Primary Lateral Sclerosis, have passed three EMGs,  and the second diagnosis is Stiff Person Syndrome - Glycine Receptor Positive (meaning PERM.)

I really thought they(Mayo) were crazy with SPS.  But I have been off my IVIG for almost three weeks now and I am a mess and declining rapidly with balance and gait.  It makes me think Mayo is on to something.  

I also have no pain.

 

I am so sorry you are going through this.

 

My dad is seeing a neurologist. Who, based on imaging and examination, has ruled out neurological disease. I am fairly sure that would include MS (mom said they are relieved that all the bad stuff they were afraid of has been ruled out.)

 

Ataxia does not sound like what is going on. He does not have uncoordinated movement, but difficulty doing certain movement - it just won't move, i.e. no staggering, he just cannot make a step. It is accompanied by some anxiety. SPS also does not sound like it fits; he has reported no muscle involvement.

 

Thank you for all your thoughts. And I really hope you find help or your condition.


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#9 StephanieZ

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Posted 13 January 2018 - 11:34 AM

Honestly, I'd get him to a good LLMD ASAP to get the possibility investigated thoroughly. 

 

With such serious symptoms, I'd want to rule in/out every reasonable treatable diagnosis. So, that's what I'd do. 

 

That said, IME, absolutely no traditional "normal" insurance-accepting doctors will even consider Lyme. So, I wouldn't bother with the regular doctors. (Really, trust me on this. I didn't believe it was possible, until I ignored my Lyme-MD-friend's advice along those lines and tried "regular" MDs/ID docs/neuro/etc . . . They are systemically so far in denial that it's truly a waste of time, even if it's covered by insurance.)

 

Just find a really good LLMD and see if they can help. If they can't, you've blown a few hundred to a couple thousand bucks and a few days effort/time. If they can, it could save your dad's life. 


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#10 regentrude

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Posted 13 January 2018 - 11:37 AM

Honestly, I'd get him to a good LLMD ASAP to get the possibility investigated thoroughly. 

 

With such serious symptoms, I'd want to rule in/out every reasonable treatable diagnosis. So, that's what I'd do. 

 

That said, IME, absolutely no traditional "normal" insurance-accepting doctors will even consider Lyme. So, I wouldn't bother with the regular doctors. (Really, trust me on this. I didn't believe it was possible, until I ignored my Lyme-MD-friend's advice along those lines and tried "regular" MDs/ID docs/neuro/etc . . . They are systemically so far in denial that it's truly a waste of time, even if it's covered by insurance.)

 

Just find a really good LLMD and see if they can help. If they can't, you've blown a few hundred to a couple thousand bucks and a few days effort/time. If they can, it could save your dad's life. 

 

My parents are in a civilized country where health insurance covers treatment for Lyme.

I don't know what one would do to "find a good LLMD", especially not from 5,000 miles away.


Edited by regentrude, 13 January 2018 - 11:38 AM.

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#11 StephanieZ

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Posted 13 January 2018 - 11:55 AM

My parents are in a civilized country where health insurance covers treatment for Lyme.

I don't know what one would do to "find a good LLMD", especially not from 5,000 miles away.

 

Oh, well, I am glad they are in a country where insurance covers Lyme. FWIW, insurance covers Lyme in the USA, too. But, IME, both in the USA and internationally, regular medical doctors do not properly diagnose or treat Lyme. I hate the USA medical system, but, for the record, lots of Canadians come to the US to get treated -- by LLMDs, not by regular doctors. 

 

A LLMD is a "Lyme Literate M.D." ==> essentially, a real "doctor" who does not ascribe to the protocols and "Lyme isn't real . . . and if it is, it can be easily treated with 14 days of doxy . . . and if you really think you have Lyme, you're nuts . . . " standards established by various medical systems.'

 

Good luck!


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#12 Liz CA

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Posted 13 January 2018 - 12:21 PM

Could he just ask his doc to run the test for Lyme? Is he someone who does not like to suggest things? Many people of this generation like my mother may be uncomfortable doing this because they think the doctor always knows best and knows what to test for.

 

Sounds like the easiest plan of action to me since he is already under the care of a neurologist.


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#13 Catwoman

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Posted 13 January 2018 - 12:23 PM

Regentrude, I’m so sorry to hear about your father. I was very fortunate because my regular doctor was very experienced with Lyme, but I know there are still doctors out there like the ones Stephanie described, particularly in places where Lyme isn’t very common.

I would recommend that your father ask his doctor to order an IgG Western Blot test for Lyme. It’s a simple blood test and could prove very helpful. As was already mentioned, the basic tests many doctors order aren’t very accurate, so your father should definitely specify Western Blot. There are several other Lyme-related diseases as well, but it has been many years since I had active Lyme disease (thankfully!) and there are other tests available as well. A while back. Lizzie in MA posted a link to more information about Lyme testing and I bookmarked it. Here it is: http://lymemd.blogsp...ew-and-old.html

Quite a few of us on the forum have experience with Lyme disease that wasn’t discovered quickly enough to prevent symptoms and be quickly taken care of with a course of doxycycline, so hopefully people like Spryte, Corraleno, Nemom, kewb, Lizzie in MA, and SarahW (and others, too, but I’m just posting the names that popped immediately into my mind) will see this thread. If they don’t, you might want to send out a few PMs and see if they have any ideas for you.

Edited by Catwoman, 13 January 2018 - 12:24 PM.

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#14 StephanieZ

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Posted 13 January 2018 - 12:28 PM

Could he just ask his doc to run the test for Lyme? Is he someone who does not like to suggest things? Many people of this generation like my mother may be uncomfortable doing this because they think the doctor always knows best and knows what to test for.

 

Sounds like the easiest plan of action to me since he is already under the care of a neurologist.

 

The problem with this is that many Lyme victims don't test positive on traditional tests. I happened to have lucked into testing *very* positive on traditional tests . . . but many, many folks don't. 

 

Which test to use and how to interpret them is very controversial . . .

 

LLMDs may use "alternative" tests (like the Igenex one referenced above) that many Lyme folks believe are more sensitive and more accurate. 

 

So, anyway, if you can get a positive Lyme test from a traditional doctor using traditional tests, that's a great first step. However, even when you get a strong positive, IME, traditional doctors do NOT treat Lyme appropriately. Which is why IMHO it is best to seek out a LLMD ASAP, because IME, the *vast majority* of traditional doctors do NOT properly diagnose OR treat Lyme. 


Edited by StephanieZ, 13 January 2018 - 12:28 PM.

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#15 Liz CA

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Posted 13 January 2018 - 03:06 PM

The problem with this is that many Lyme victims don't test positive on traditional tests. I happened to have lucked into testing *very* positive on traditional tests . . . but many, many folks don't. 

 

Which test to use and how to interpret them is very controversial . . .

 

LLMDs may use "alternative" tests (like the Igenex one referenced above) that many Lyme folks believe are more sensitive and more accurate. 

 

So, anyway, if you can get a positive Lyme test from a traditional doctor using traditional tests, that's a great first step. However, even when you get a strong positive, IME, traditional doctors do NOT treat Lyme appropriately. Which is why IMHO it is best to seek out a LLMD ASAP, because IME, the *vast majority* of traditional doctors do NOT properly diagnose OR treat Lyme. 

 

 

Perhaps OP can let her Dad know what Cat posted with the exact name. And hopefully the doctor will not be offended. I am not sure if OP's Dad can select a new doctor or has to go through a gatekeeper under his system.


Edited by Liz CA, 13 January 2018 - 03:14 PM.

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#16 regentrude

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Posted 13 January 2018 - 03:40 PM

Could he just ask his doc to run the test for Lyme? Is he someone who does not like to suggest things? Many people of this generation like my mother may be uncomfortable doing this because they think the doctor always knows best and knows what to test for.

Sounds like the easiest plan of action to me since he is already under the care of a neurologist.

 

That is what I suggested when we spoke on the phone. I was just wondering whether there is something more specific he should be asking for.



#17 regentrude

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Posted 13 January 2018 - 03:43 PM

Thank you all for the suggestions. It may be a long shot, but I figured testing can't hurt.

What can they do for chronic lyme?


Edited by regentrude, 13 January 2018 - 03:43 PM.


#18 Chrysalis Academy

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Posted 13 January 2018 - 06:40 PM

Usually a cocktail of several different antibiotics to deal with the different forms the spirochetes can take. If he's in Germany he may be in luck, there are some much more sophisticated protocols involving botanical medicine,  heat therapy, and other things that are non-mainstream here, but more mainstream there (as I understand it). Or there are more alternative nutraceutical approaches. including herbal treatments, if the antibiotics don't work or are too harsh.   


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#19 Corraleno

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Posted 13 January 2018 - 07:38 PM

I don't know what one would do to "find a good LLMD", especially not from 5,000 miles away.


Armin Schwarzbach seems to be a Lyme specialist in Germany and he runs a lab (Arminlab) that claims to have more accurate tests. Perhaps your dad could either call the lab to get more info, or ask his neurologist to order the tests for him. I'm sorry he's going through this; it must be hard to be so far away and not be able to help more directly.  :sad:
 
ETA: My son was not diagnosed until 2 yrs after he was infected, but after 18 months on doxy he seems to have recovered completely as far as we can tell. 

Edited by Corraleno, 13 January 2018 - 07:40 PM.

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#20 BlsdMama

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Posted 13 January 2018 - 09:34 PM

I am so sorry you are going through this.

 

My dad is seeing a neurologist. Who, based on imaging and examination, has ruled out neurological disease. I am fairly sure that would include MS (mom said they are relieved that all the bad stuff they were afraid of has been ruled out.)

 

Ataxia does not sound like what is going on. He does not have uncoordinated movement, but difficulty doing certain movement - it just won't move, i.e. no staggering, he just cannot make a step. It is accompanied by some anxiety. SPS also does not sound like it fits; he has reported no muscle involvement.

 

Thank you for all your thoughts. And I really hope you find help or your condition.

 

 

Okay, so, going through this - if he has weakness, I would need to know what this means.  Does that mean he *feels* weak/lethargic like he just can't take a step or does that mean clinical weakness in that he absolutely, positively, cannot lift his leg?  If so, that has to have a muscular involvement.  I mean, how does he get from the kitchen to the bedroom?  Because if he says he just can't take another step, but he's not bedridden or in a wheelchair currently, then he CAN physically take another step, it's just hard.  And hard because he's tired?  Or hard as in his leg feels like a blog of wood and to make it work is a huge effort?  And if things like gait or balance is off, then you are indeed most likely looking at a neuromuscular issue.  If he has NOT had a lumbar puncture then they have definitely NOT ruled out MS or other neurological issues.  It is classic neuro work-up - a neurological exam, blood tests, and an LP.  If a good neuro thinks he looks like MS, then they are going to start with an MRI and do a lumbar puncture for good measure to make absolutely sure, especially if these are new symptoms.  My MRI was good (mostly as explained above) but because of my symptoms, they needed to be sure and an LP was necessary.

 

He should have had a neuro exam by the doc.  It would be incredibly important to know if his reflexes were normal, hypo, or hyper in any one area and if they were symmetrical or non-symmetrical.
So, when you say he cannot make a step, do you mean he feels too weak (tired, exhausted, etc.) to take a step OR do you mean his muscle is not listening to his brain and he cannot WILL it to take a step?  The anxiety is really more of a by product of not having answers than some kind of direct symptom, kwim?  Or if it is not he is to weak to step and that he CAN step but it takes a LOT of effort, he needs to know if he has any spasticity or rigidity.  This is not something one can feel.  This is done with a neurological exam finding.  For example, I feel NO rigidity.  I do not FEEL spastic nor rigid.  However, I am told (both by Mayo and by my university neuro) that rigidity and spasticity is exactly what makes it hard for my right leg to take a step.

So I'm glad he's seen a neuro.  Is it at a teaching hospital by chance? That explanation of weakness is really key.  I know that sounds so silly but it's really important to differentiate.

My first stop, early in my disease, was to a local neuro.  She told me that while she understood that I "felt" like I was dropping my toes, that I had no disease. I asked for a referral (mostly because I *felt* nothing - I was just tripping.  That "feel" word is just very confusing.)  My exam was *very* telling though now that I know what I know.  Now I know that those "brisk" reflexes were a dead on give away that I had Central Nervous System involvement.

 

If he has Lyme and he has affected weakness in the spinal column (affecting his ability to walk) then it is neuro borreliosis and he will have other neurological signs.

Traditional Lyme is going to attack the joints.

Lyme attacking the heart is going to have cardio symptoms.
Chronic neurologic Lyme is going to hit the brain and/or spine.

I know that you live in a current, civilized country with real medical care.

 

The very real problem is that currently our healthcare system does not fully understand Lyme.  They ARE learning.  But the curve is steep and there are those of us who are going to be caught in the gap between "this is what we currently recognize as Lyme" and "wow, a lot of people share these same symptoms and why isn't it showing up on the current Western Blot." 

 

I think it was JUST in 2015 that Lyme Mayonii was discovered in Minnesota.  We do not know all the different spriochetal kinds of Lyme right now.  And unfortunately we have exactly one test and MANY, MANY, MANY people are discovering it is wholly accurate and the current treatment of Lyme that is accepted and recommended by the CDC is not sufficient.  To say that because it is 2017 that we understand disease is presumptious on our part - we don't understand MANY diseases.  I really didn't understand this in 2016.  I didn't.  When I started showing symptoms I thought this was easy peasy. I was tested for Lyme immediately because my symptoms scream Lyme.  

 

So, from Mayo's own page: Caution: A negative result does not exclude the possibility of infection with Borrelia burgdorferi.

 

https://www.mayomedi...terpretive/9129

But, that's really NOT the problem.  The REAL problem is the assumption that 28 days of antibiotics will kill a spirochetal infection of Lyme after its crossed the blood brain barrier.  

So, there's this movie about Lyme that left me feeling like this whole Lyme thing was so blown out of proportion.  Truly, I was thinking these people should don tinfoil hats.  I think Lyme is that disease everyone is latching onto. And I don't recommend the movie because it borders on unbelievable, even given my own experiences. Unfortunately I also think it is a serious epidemic and we don't have any clue how bad this is going to be nor how to treat people who have been infected for years.  Neuro-Lyme is one of the scariest diseases of our time.  I honestly believe this.  I don't believe I can tell you that it CAN be treated.  In the Stiff Person groups there is a relatively high percentage who have tested positive for Lyme.  Coincidence? Maybe.  There's a fair number of Motor Neuron Disease patients testing positive too. :( 

The Lyme thing aside, if he really hasn't had a full work-up which would include a neuro exam, blood tests for a nutritional profile (the neuro would have done this as well to exclude any kind of serious vitamin deficiency because that can cause weakness) and, dependent on the exam, a lumbar puncture then that should be completed.

If the neuro is sure he has no neurological issues but there IS something wrong with him, then a referral would be in order.  Whether that's to a rheumatologist (if there is joint pain or involvement) or to some autoimmune doc then if there was no referral I'd be wondering why not?  It was only my first doctor that said, essentially, meh, you're too young for this or that and I didn't see anything on the EMG.  You're good.  I *knew* something wasn't right.  Saw the next doctor pretty quickly and it was very obvious something wasn't right.  He immediately began running tests.  Sometimes you get someone who is not good at what they do, are too busy, or are just pooh-poohing what a particular patient is saying.  If this is a man who really was well most of his life and isn't in the habit of dreaming stuff up, then I think if that neuro says he is done with him and found nothing  then you most certainly need a second opinion by someone.  KWIM?

 


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#21 BlsdMama

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Posted 13 January 2018 - 09:40 PM

Thank you all for the suggestions. It may be a long shot, but I figured testing can't hurt.

What can they do for chronic lyme?

 

 

That is the $1,000,000 question.  There are those that believe that a combination of heavyweight IV drugs can kill a chronic neurological infection.  There are others who claim that Lyme caused the death of their loved ones and Lyme spirochetes were indeed confirmed post-mortem despite treatment.

 

It is not as benign as people would like to believe.  

Some believe oral doxycycline is sufficient.  Others believe that doxy only drives them into cystic form and they will later resurface.  Mayo's current treatment is 28 days of doxy.  My neuro at Mayo told me, in my shoes, she would go with the IV drugs my Lyme doctor was recommending.  There are "real" doctors treating Lyme.  Some of them take insurance.  Some of them have been targeted for treating Lyme past the 28 days and prosecuted and sued by the insurance agencies.  It only became LEGAL in Iowa to treat past 28 days last year.  The year before that they actually prosecuted three doctors for prescribing past 28 days.  Not kidding.  It's crazy.

I had a PICC (central line through my arm) placed and did IV drugs for approximately six weeks.  Daptomycin and Ceftriaxone combination that was covered by my insurance.   


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#22 regentrude

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Posted 14 January 2018 - 08:44 AM

Thank you so much for taking the time to type this all out. I really appreciate you sharing all the information (and am sorry it was necessary for you to know all this.)

 

Okay, so, going through this - if he has weakness, I would need to know what this means.  Does that mean he *feels* weak/lethargic like he just can't take a step or does that mean clinical weakness in that he absolutely, positively, cannot lift his leg?  If so, that has to have a muscular involvement.  I mean, how does he get from the kitchen to the bedroom?  Because if he says he just can't take another step, but he's not bedridden or in a wheelchair currently, then he CAN physically take another step, it's just hard.  And hard because he's tired?  Or hard as in his leg feels like a blog of wood and to make it work is a huge effort?  And if things like gait or balance is off, then you are indeed most likely looking at a neuromuscular issue.  If he has NOT had a lumbar puncture then they have definitely NOT ruled out MS or other neurological issues.  It is classic neuro work-up - a neurological exam, blood tests, and an LP.  If a good neuro thinks he looks like MS, then they are going to start with an MRI and do a lumbar puncture for good measure to make absolutely sure, especially if these are new symptoms.  My MRI was good (mostly as explained above) but because of my symptoms, they needed to be sure and an LP was necessary.

He should have had a neuro exam by the doc.  It would be incredibly important to know if his reflexes were normal, hypo, or hyper in any one area and if they were symmetrical or non-symmetrical.
So, when you say he cannot make a step, do you mean he feels too weak (tired, exhausted, etc.) to take a step OR do you mean his muscle is not listening to his brain and he cannot WILL it to take a step?  The anxiety is really more of a by product of not having answers than some kind of direct symptom, kwim?  Or if it is not he is to weak to step and that he CAN step but it takes a LOT of effort, he needs to know if he has any spasticity or rigidity.  This is not something one can feel.  This is done with a neurological exam finding.  For example, I feel NO rigidity.  I do not FEEL spastic nor rigid.  However, I am told (both by Mayo and by my university neuro) that rigidity and spasticity is exactly what makes it hard for my right leg to take a step.

 

The problem is that I have no visual of his symptoms. My parents live in Europe and I in the US; I have not seen my father since June and only hear on the phone how my mom describes his symptoms. And she can only describe what she sees, because he does not clearly communicate about how it feels to him.He does not tell me either So, it's a bit like a game of telephone.

 

From what I understand, symptoms come and go. Some day he is able to walk, slowly, but steadily. Other days the walk from the street to the house takes an hour because he cannot will his legs to do the task. Not because it is exhausting.

 

Thanks for suggesting other avenues to follow. I am glad that I threw the possibility of Lyme out there for them to explore; he is going for additional blood tests next week.

 


Edited by regentrude, 14 January 2018 - 08:46 AM.

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#23 Bluegoat

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Posted 14 January 2018 - 03:37 PM

Thank you all for the suggestions. It may be a long shot, but I figured testing can't hurt.

What can they do for chronic lyme?

 

There isn't even medical consensus that chronic Lyme disease exists - that's why treatment isn't covered, and there aren't really any recommended treatments with an empirical basis.  Sometimes they use long courses of IV antibiotics, but that has real risks involved.


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#24 countrygal

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Posted 14 January 2018 - 10:15 PM

First, there are NO accurate tests that can tell you for sure if someone has Lyme disease. The Igenex Western blot would be the most accurate (it has more bands) but a negative doesn't exclude it. The CDC even admits that and states it is a clinical diagnosis (based on history, symptoms, and ruling out other diseases.) Here is the controversy as I understand it: Most mainstream doctors will not acknowledge or do not know how to clinically diagnose, let alone treat, chronic lyme. There are no set guidelines to treat chronic lyme as treatment has to be highly individualized with an expert (lyme literate practitioner - someone a member of the International Lyme and Associated Diseases Society aka ILADS.) The Infectious Disease Society of the US states 4 weeks of doxycycline is only needed, even though ilads has 80+ case studies of the bacteria persisting (CSF, synovial fluid of the joints, etc...) IDS states long term antibiotics are ineffective because of one study that states 3 months of one antibiotic didn't rid patients of their symptoms. Chronic lyme patients will always relapse if treatment is ended that soon and co-infections (like babesia and bartonella) aren't addressed. Those need separate/different treatment. My LLMD said average treatment is 2 years, but her patients are very sick by the time they find her. Four weeks of antibiotics in the acute phase (first few weeks after tick bite) of the disease is usually effective but your father would be beyond that if he has it.

In your father's case, I would get a second opinion from another neurologist. Not that the first one is wrong, but just to have another person look at his situation. Try to find an ilads practitioner who can go through his history. If he is not getting help through conventional medicine (even the best neurologist and infetioous disease doctors won't treat lyme appropriately) and an ilads doctor believes 'clinically' (as there is no accurate test) than a trial treatment with antibiotics. My md uses oral and finds them just as effective, so no PICC line risks. Having a flare of symptoms at the beginning (called a jerish-herxheimer reaction) is telling that the lyme are being killed and the diagnosis is correct. Then improvement starts. Stopping antibiotics before having 2 months of symptom-free (or plateaued health) is then the time to stop antibiotics and watch for a relapse. It's up to the patient to decide the risk of LT antibiotics vs. current state of health and prognosis. Hope this helps clear up some understanding and that your father finds the help he needs.


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#25 StephanieZ

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Posted 15 January 2018 - 03:11 PM

Thank you all for the suggestions. It may be a long shot, but I figured testing can't hurt.

What can they do for chronic lyme?

 

For chronic Lyme, treatment generally requires many months of multiple very strong antibiotics, various supplements, and even sometimes some very unusual things  . . . I know of one guy who drives from UT to Mexico monthly for some sort of bone marrow something or other . . . Apparently, it got him out of being wheel chair bound, so . . . whatever you gotta' do, you gotta' do. Strong ABX often work well, but sometimes bodies can't handle the duration and intensity of treatment, so they have to go to herbs only. A good friend (an MD, actually), has chronic Lyme, and she takes strong antibiotics one week out of every month for her maintenance . . . The damn thing about chronic Lyme is that an actual cure is rare. It's more of getting "better" but not "well" . . . But "better" can be much, much better than sick!

 

When I say strong ABX, I mean really, really strong. I had "acute Lyme" which was diagnosed about 1 month after the tick bite. (I had very severe symptoms, entire body, central nervous system, etc, etc, so there was no ignoring it . . . I'd have been dead long ago if I didn't finally get diagnosed.) I ended up taking ABX for 3 months. Dosages were approximately double typical high end of dose for each ABX, and I generally took 2 or 3 different ones simultaneously, so each day I was taking double dose of two or three different ABX. Every 4 weeks or so, the LLMD would reassess and juggle which meds to take/change ABX/etc. Lyme treatment is very much an art as well as a science. You want and need a doctor who pretty much works full time in just Lyme. It's that complicated. 

 

Also, TONS of herbal supplements, vitamins, and similar things -- also all supervised by the LLMD. I was probably taking 30-40 capsules a day for months -- some to help battle the Lyme directly, others to help protect you and heal your body from the potent but necessary medicines . . .

 

I was very fortunate that I got in with a good LLMD early enough in my disease that it was still a "fresh" infection, so I am optimistic that I won't need future treatment (i.e., I won't convert to chronic Lyme). My impression is that if people have chronic Lyme, treatment generally takes years, not months. I was essentially throwing the kitchen sink at my Lyme with the hope to avoid chronic Lyme. I've been off the ABX for about 4 months, so I'm hopeful that I escaped . . . but won't really breathe easy for a year or two symptom free.

 

(I'll be taking various vitamins and supplements for a year or so to rebuild my GI tract and otherwise cleanse my body from the witches' stew of ABX and other drugs I took for the Lyme.) 


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#26 cintinative

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Posted 15 January 2018 - 03:25 PM

I didn't read the other posts, but I just want to encourage you to keep pressing the neuro to investigate. Clear MRIs do not always mean there is nothing neurological amiss.  Also, neurologists tend to specialize in certain disorders, so the right diagnosis might not be on his/her radar.

 

In the realm of possible dead ends, it is worth asking: has your neurologist ever mentioned movement disorders?  My mom was recently evaluated for this by a movement disorder/Parkinsonian disorder neurologist.  Many of these do not involve pain. Here is a website listing some of them. Each disorder has a link to more information. One of the ones they looked at for my mom was multiple system atrophy. I had never heard of it before.  Most of the rest I have only heard of because of the tv show House.
 

http://www.aans.org/...ement-Disorders

 

 


Edited by cintinative, 15 January 2018 - 03:28 PM.

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#27 Pen

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Posted 15 January 2018 - 04:24 PM

Could be Lyme or another tick borne infection.  They mimic a lot of other things, often have unclear symptoms, and are hard to diagnose and to treat, both.  Other things coming to my mind not mentioned above would be neurological manifestations of porphyria, or neurological manifestations of sub-optimal B-vitamin levels.  

 

In USA my understanding is that Igenex is the best for Lyme testing, but not at all perfect.  

 

You might want to take a look at (or recommend to your father) Stephen Harrod Buhner's books about herbal treatments for Lyme and other tick infections to understand more about these illnesses and some treatment options especially in chronic cases.  The herbal treatments may do better than pharmaceutical abx at dealing with Lyme or similar infections when they are in bio-film form. 

 

I know one person who apparently recovered fully from bad chronic Lyme with a combo of IV abx, IV vitamin C, and herbal remedies.  A lot of people get "better," but not fully recovered.

 

At one point in my illness I had trouble with initiating movement on my left side, and found some help with making the movement I wanted on the right side, and sort of copying it with the left side.  Another person I know found some help with this sort of thing using two trekking poles to aid with balance and movement.  But since the causes could be different for us cf. your father, the approaches might or might not help any.


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