I have had Lyme since 2004 and had it twice that year. I was treated successfully by a local infectious disease doctor and only issue I had that came out of it was "word recall".
Like all of us, I re-focused my energies on the immediate needs of life and went on until last month when I was having issues which I thought were related to the 14-15 hour work days, but an MRI came back showing "mild" cortical atrophy.
A little background. I am a white male, 55 years old, with general good health. Only real issue other than this is diverticulitis. Family history on my fathers side of alzheimers. Stories of my grandfather being "senile" at 69 and my dad died from a alzheiners related stroke at 82 in 1997. Dad had high blood pressure and diabetes (no medication required).
I have been referred out to a neuroligist by my primary care physician but would like to get some input from folks on this forum as well before I proceed as I think that having Lyme is a salient point to be considered with the cortical atrophy.
I am looking for a good neurologist who has experience with Lyme in the Central New Jersey area. I have some higher cortical brain issues that I was attributing to my work but since I have aleviated that and they continue, I feel there is more to this. I have read several articles that lead me to believe that there could be several things that could be causing my less than stellar brain functions. My sister is 10 years older than me and she says she has MS. I also read that could be a contributing factor.
Can anyone refer me to a neurologist in the area that I can start off with and see where this goes? Not just some doctor I find on my healthcare insurance website, but someone I can chat with to see what next steps should be taken?
Let me know.
Thanks,
Bruce
Posts: 5 | From Millstone Township | Registered: Mar 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You are right BruceS there are many causes for your
symptoms. The number one is reactivation of Lyme.
As in syphilis it has to be treated as such. It
is now know that the spirochete can become latent
just like its cousin. Meaning more treatment. I
would find a LLMD to treat. MS is a syndrome of
unknown origin. Many patients are just now
finding they were diagnosed with MS when all
along they have Lyme. Igenex is the lab most used
and many of us have to do a antibiotic challenge
in order for it to be detected on WB. Unless you
had a kete killing fever of over 105 in 2004 or
you caught it very early, I
would say the lyme is back. If treatment shows
signs of killing them meaning you get sicker like most do. I would say you have an answer.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Shosty
Unregistered
posted
My husband has some white spots and atrophy due to small vessel disease, meaning he has had a lot of little infarcts all through his brain. He is on Plavix and a statin.
This was discovered after he had a stroke last May, believe it or not.
Atherosclerosis can cause these white areas on the MRI, as can a hole in the heart (detectable only with a special echo).
So can Lyme, or MS.
So there are many possible causes.
My husband suffers from extreme fatigue and some word recall issues, but fortunately is not doing too badly.
quote:Originally posted by Pinelady: You are right BruceS there are many causes for your
symptoms. The number one is reactivation of Lyme.
As in syphilis it has to be treated as such. It
is now know that the spirochete can become latent
just like its cousin. Meaning more treatment. I
would find a LLMD to treat. MS is a syndrome of
unknown origin. Many patients are just now
finding they were diagnosed with MS when all
along they have Lyme. Igenex is the lab most used
and many of us have to do a antibiotic challenge
in order for it to be detected on WB. Unless you
had a kete killing fever of over 105 in 2004 or
you caught it very early, I
would say the lyme is back. If treatment shows
signs of killing them meaning you get sicker like most do. I would say you have an answer.
Thanks for the reply.
When I got Lyme the first time in '04 I was very aware and on top of it as I had a reaction to the tick bite, but later that year I had some of the same symptoms I have now and was originally diagnosed as having a transient stroke. Several months went by while on Plavix and I did not get any better so I went to a different neurologist and first thing was a blood test which showed I had Lyme again. Took anti-biotics and seemed to clear up until about 10-12 months ago, but I have been working long intense hours and related these issues/symptoms to that. I got laid off a month ago and first thing I did was to go for a checkup. My principal care physician sent me for an MRI which the reading came back as "mild cortical atrophy". PCP went right for alzheimers but I question this diagnosis and it has not been confirmed yet, so I want to get in to see a GOOD neurologist who has experience with Lyme. Also need a new Infectious Disease Doctor as I think this is getting to be over this guys head (seems like he is more into HIV than Lyme).
Do you know any good neurologists that I can make contact with?
Bruce
Posts: 5 | From Millstone Township | Registered: Mar 2007
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quote:Originally posted by Shosty: My husband has some white spots and atrophy due to small vessel disease, meaning he has had a lot of little infarcts all through his brain. He is on Plavix and a statin.
This was discovered after he had a stroke last May, believe it or not.
Atherosclerosis can cause these white areas on the MRI, as can a hole in the heart (detectable only with a special echo).
So can Lyme, or MS.
So there are many possible causes.
My husband suffers from extreme fatigue and some word recall issues, but fortunately is not doing too badly.
How is your cholesterol?
Thanks Shosty.
How old is your husband? I have built up my stamina and strength in the past 8-9 months (had prostate surgery December of '08, no cancer just BPH). I think this was brought on by Lyme as well!
Cholesterol has not been bad. Have it checked each year (as well as PSA's) and it is usually below 200. Ranges between 178 and 197 over the past 4-5 years (not great but not bad either).
I am not overweight either (6'1" and 190-195 lbs) but cold use some more exercise (exercise not house or yard work! ).
My sister has "supposedly" been diagnosed with MS which I question. I wonder if she has Lyme and just does not realize the symptoms are close?
Bruce
Posts: 5 | From Millstone Township | Registered: Mar 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Its very possible the MS is Lyme. I was almost in a wheel chair a few days before I found Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I spoke with a family member who contacted Lyme quite a few years back and it went for quite a long time not correctly diagnosed. She said that the doctors kept treating her for flu rather than Lyme. Once it was correctly diagnosed, she was on an I/V drip for a good period of time, but she said that the symptoms kept coming back and the most salient was a high fever. She said that one time she was in the hospital for the fever and the high fever went over 105 degrees but since then she has had no symptoms or major complaints other than that long term affects of Lyme. She said that the doctors told her she probably "burned" the spirocets out of her.
Have you ever heard of anything like this?
Posts: 5 | From Millstone Township | Registered: Mar 2007
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posted
You might want to contact support groups in your state, see if they know of any LL neuros. They are hard to find. Also, the LDA is in your state.
Fever therapy (malaria) was once used to treat syphilis, in the pre-antibiotic era, as spirochetes are very intolerant of high temperatures. But I don't recommend trying this for lyme disease, as malaria has become resistant to a number of meds.
What is your coinfection status?
Posts: 8430 | From Not available | Registered: Oct 2000
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