posted
Well, we got back from seeing the Neuro today. He said the Lyme Titre came back negative which indicated no Lyme. He said the MRI was fine, indicating everything in the brain was normal.
He said he thought we were dealing with early Alzheimer's and we could start hubby on a memory enhancing drug.
I asked if the Lyme tests weren't inconsistent and weren't there specific labs to use? He said they used the lab at the hospital, but the Lyme Titre indicated no Lyme in the body.
I asked if someone with early Alzh would be exhausted and sleeping all of the time. Neuro said no. I asked if someone with early Alzh would have the pressure on the front of his head which my husband describes. Neuro said no.
I asked if there was a way to test if it could be something else...and why wouldn't we try more tests since he obviously has symptoms which aren't consistent with Alzh? He said we could do a lumbar tap and see what shows. They are supposed to schedule that for next week sometime.
Will the spinal tap show Neuro Lyme? I feel so helpless.
Why on earth are they willing to give him memory enhancing drugs for Alzh without a real diagnosis, but NOT willing to even try antibiotics for a couple of weeks?
Posts: 30 | From Tennessee | Registered: Sep 2005
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posted
Spinal taps very seldom find lyme even when it is there, mostly used to rule out other things. My suggestion is to find a doc who knows more about lyme. You are not going to get the help you need from this one.
I refused a spinal tap because of the low likelihood of finding lyme in the fluid. Glad I did this--some people have had bad experiences. Think you might consider declining this test. Get used to thinking for yourself and being your husband's advocate. Unfortunately, this disease is being botched by the medical establishment at this time, so you need to protect yourself from the misinformation so common in the majority of docs.
Have you read the newby links? If not, start reading. Especially start with the FDA advisory on lyme testing.
No test is perfect and what the local hospital did was very imperfect.
Have you contacted a support group? If not, suggest this would be a good way to find more help than you are getting now. click on support groups line in green menu box left side of this page.
It can be very hard to find a knowledgable doc.
If the one you have now wants to do more testing, ask for co-infection testing like babesia, ehrlichia or bartonella. If they find another tickborne disease, maybe it will become apparent that he could also have lyme. Don't expect too much as those tests are imperfect also. But it would be a place to start, while you are looking for a better doc. The important thing to remember is that docs who haven't figured out testing is unreliable are not going to be any good at treating either.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thank you. Yes, I've read the newbie links, but to tell the truth, I'm still confused about it all....which tests are the best, etc.
You would think in a city the size of Nashville, TN I could find a doctor who would run the specific tests that need to be done.
Is the co-infection testing done through bloodwork. I'm sorry, I'll go read some more.
So, you suggest against the spinal tap? The Neuro indicated this would definitely tell us if he has Lyme, or NeuroLyme. Thank you.
Posts: 30 | From Tennessee | Registered: Sep 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I suggest that you see a doctor who has experience treating Lyme disease misdiagnosed as ALS. If you send me your e-mail address by private message (the little envelope above) I will be glad to direct you to someone who will help.
quote:Originally posted by CMarie: Well, we got back from seeing the Neuro today. He said the Lyme Titre came back negative which indicated no Lyme. He said the MRI was fine, indicating everything in the brain was normal.
He said he thought we were dealing with early Alzheimer's and we could start hubby on a memory enhancing drug.
I asked if the Lyme tests weren't inconsistent and weren't there specific labs to use? He said they used the lab at the hospital, but the Lyme Titre indicated no Lyme in the body.
I asked if someone with early Alzh would be exhausted and sleeping all of the time. Neuro said no. I asked if someone with early Alzh would have the pressure on the front of his head which my husband describes. Neuro said no.
I asked if there was a way to test if it could be something else...and why wouldn't we try more tests since he obviously has symptoms which aren't consistent with Alzh? He said we could do a lumbar tap and see what shows. They are supposed to schedule that for next week sometime.
Will the spinal tap show Neuro Lyme? I feel so helpless.
Why on earth are they willing to give him memory enhancing drugs for Alzh without a real diagnosis, but NOT willing to even try antibiotics for a couple of weeks?
Posts: 19 | From Northern California | Registered: Sep 2005
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posted
Sorry i am new to this site and just kinda figuring out how things work on it.
First of all you need to write down all the sympotoms that your husband has. The reason that they are willing to give your husband meds that help with memory loss is because it's at a low cost to them. You can have lyme disease tests come back negative and be positive with the bacterial infection. Here is my story: When I was 12 I went away to a camp that I had never been to. I got my period for the first time and was grossly sick. I had a sprained ankle (ie muscle pain). About two monthes later I woke up with horrible very unsual ance. I literally woke up and my face was a mess. I was put on doxy, minocycline, tetracyline and many more before I knew a year had almost gone by-my face still HORRIBLE and I was left with the only option accutane. I went on it for 6 months and figured all the "side effects" from the meds were what was going on. I think from being on those meds which are also used to treat lyme it kinda supressed the lyme disease so that it wasn't completely active. I played sports and constantly was spraining, ankles, knees, rists etc. My freshman year of high school i broke out into hive, my lip swelled up so big I had to go to the emergancy room and my knee completely gave out and i tore my acl. All very unsual things for a kid who is very active and fit. My junior year i was in a car accident and never recovered. My freshman year of college i broke out in hives again was over dosed on pretnasone and got shingles. Lyme feeds of pretnasone so i started to get really sick. I got horrible acne again very very rare type that had to be treated in combination with prenasone for over a year. I then started getting really horrible stomach aches, and then viritgo, then mono and then i started vommitting everything I ate. I should be going into my senior year of college but I am home-I was diagnoised with lyme disease 3 monthes ago. When I started vommiting I left college (last fall-mid semester) and came home to deal with the PROBLEM. I had been treating symptom for 9 years but never the problem. My mom and I always asked my doctors WHAT IS THE ROOT OF THIS>.but they are human and really didn't think it went deeper than what they were treating. When I left college for the second time (first time when I had shingles). I decided that I was going to figure out what the HELL was wrong. I have kaiser insurance. They make money on healthy people not sick. So of course they just wanted to treat my belimia (vommiting) because to them it was obvious that's what I had. After six monthes of test-mri's, cat-scans, blood work, etc they came up with IBS and belmia and depression. My therapist-(the one they sent me to) disagreed. He thought I was really sick with something. What was I to do-I had half the medical staff telling me that I had something that a doctors which specializes in that field said flat out u don't! I knew I didn't have belima because I wasn't forcing myself to throw up and IBS come on. So I went outside of kaiser. I saw a doctor who specializes in challenging cases-and who just happened to have a backround in lyme disease. She did a serious of comprehensive blood work (which costs A LOT of money) and based on a cullimation of tests and symptoms diagnoised me with LD as well as two co-infections from the tick and told me that I still had shingle and mono active in my system. She put me on meds which I will be on for a minimum of 2 years (pretty standard for LD). Kaisers lyme test came back negative-THAT doesn't mean u don't have it! Lyme is very hard to diagnoise-unless ur doc has a backround he probably won't catch it. So is there a point to this long descriptive story-OF COURSE..Your husband may or may not have lyme disease but the only way to tell is to do a comprehensive blood work and list out all symtoms. Muscle, join pain, think of everything u can. LD can stay dormit in ur body for a long time and it's very much like a camilian in that it can change it's symptoms in u very quickly, which makes it hard to cure. If u think ur husband has LD he will need to be on anti-bitoitcs for more than a few weeks. He may feel better but chances are he will get worse before he gets better. In order to make sure u kill of the bacteria u need a long treatment period. If you have any questions please feel free to e-mail me at [email protected] or write back on this thing..I am not really too sure how this all works because i just became a member-
good luck, Lindsay
Posts: 19 | From Northern California | Registered: Sep 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Some of us have trouble reading a solid block of print, so I have split up your post so we can handle it. Lyme thing. Ann - OH
You wrote: Sorry i am new to this site and just kinda figuring out how things work on it.
First of all you need to write down all the sympotoms that your husband has.
The reason that they are willing to give your husband meds that help with memory loss is because it's at a low cost to them.
You can have lyme disease tests come back negative and be positive with the bacterial infection.
Here is my story: When I was 12 I went away to a camp that I had never been to. I got my period for the first time and was grossly sick. I had a sprained ankle (ie muscle pain).
About two monthes later I woke up with horrible very unsual ance. I literally woke up and my face was a mess.
I was put on doxy, minocycline, tetracyline and many more before I knew a year had almost gone by-my face still HORRIBLE and I was left with the only option accutane.
I went on it for 6 months and figured all the "side effects" from the meds were what was going on.
I think from being on those meds which are also used to treat lyme it kinda supressed the lyme disease so that it wasn't completely active.
I played sports and constantly was spraining, ankles, knees, rists etc.
My freshman year of high school i broke out into hives, my lip swelled up so big I had to go to the emergancy room and my knee completely gave out and i tore my acl. All very unsual things for a kid who is very active and fit.
My junior year i was in a car accident and never recovered.
My freshman year of college i broke out in hives again was over dosed on pretnasone and got shingles. Lyme feeds of pretnasone so i started to get really sick.
I got horrible acne again very very rare type that had to be treated in combination with prenasone for over a year.
I then started getting really horrible stomach aches, and then viritgo, then mono and then i started vommitting everything I ate.
I should be going into my senior year of college but I am home-I was diagnoised with lyme disease 3 monthes ago.
When I started vommiting I left college (last fall-mid semester) and came home to deal with the PROBLEM.
I had been treating symptom for 9 years but never the problem. My mom and I always asked my doctors WHAT IS THE ROOT OF THIS>.but they are human and really didn't think it went deeper than what they were treating.
When I left college for the second time (first time when I had shingles). I decided that I was going to figure out what the HELL was wrong.
I have kaiser insurance. They make money on healthy people not sick. So of course they just wanted to treat my belimia (vommiting) because to them it was obvious that's what I had.
After six monthes of test-mri's, cat-scans, blood work, etc they came up with IBS and belmia and depression. My therapist-(the one they sent me to) disagreed. He thought I was really sick with something.
What was I to do-I had half the medical staff telling me that I had something that a doctors which specializes in that field said flat out u don't! I knew I didn't have belima because I wasn't forcing myself to throw up and IBS come on.
So I went outside of kaiser. I saw a doctor who specializes in challenging cases-and who just happened to have a backround in lyme disease.
She did a serious of comprehensive blood work (which costs A LOT of money) and based on a cullimation of tests and symptoms diagnoised me with LD as well as two co-infections from the tick and told me that I still had shingle and mono active in my system.
She put me on meds which I will be on for a minimum of 2 years (pretty standard for LD).
Kaisers lyme test came back negative-THAT doesn't mean u don't have it! Lyme is very hard to diagnoise-unless ur doc has a backround he probably won't catch it.
So is there a point to this long descriptive story-OF COURSE..Your husband may or may not have lyme disease but the only way to tell is to do a comprehensive blood work and list out all symtoms. Muscle, join pain, think of everything u can.
LD can stay dormant in ur body for a long time and it's very much like a camilian in that it can change it's symptoms in u very quickly, which makes it hard to cure.
If u think ur husband has LD he will need to be on anti-bitoitcs for more than a few weeks. He may feel better but chances are he will get worse before he gets better.
In order to make sure u kill of the bacteria u need a long treatment period.
If you have any questions please feel free to e-mail me at [email protected] or write back on this thing..I am not really too sure how this all works because i just became a member-
good luck, Lindsay
-------------------- Lindsay Galligan
Thank you Lindsay for your story. I am so sorry you have had to go through all this. I do hope you will find some relief.
Sounds like your doctor is very thorough and will stick with you.
quote:Originally posted by CMarie: So, you suggest against the spinal tap? The Neuro indicated this would definitely tell us if he has Lyme, or NeuroLyme. Thank you.
My kids have chronic Lyme and have had several spinal taps. Their spinal fluid has always been negative for Lyme - they have tested positive for Lyme by blood tests. Spinal fluid is not a good way to test for Lyme but can be for other things.
My kids have high intracranial pressure and the spinal tap reduces the pressure. A spinal tap may reduce the pressure feeling in his head.
Igenex (www.igenex.com) is a good lab for Lyme testing. They will send you the test kit. Do you have a doctor that would draw the blood?
Good luck!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Oh my gosh. They will send me the test kit? Yes, I think I can find a doctor who will test for it. I'm going to call one in the morning and "pick his brain" a bit.
Thank you so much. I don't know how I missed that piece of information.
So sorry you can't find a local doctor. Many of us have the same problem. I did notice that there are 2 support groups in Tennessee listed on this site. You really need to call them both and ask for recommendations of doctors.
I didn't give you the link before with my hubby's very very long treatment history over the last 4 1/2 years as I didn't want to scare you off. Hubby has seen probably 10 different neurologists and only 1 knew anything about Lyme.
I used to be quiet and shy and not question doctors either. After you have seen about 60 of them like hubby and I have you will learn really quickly that most of them don't have a clue when it comes to Lyme disease.
If your husband has Lyme disease or possibly babesia there is a reason that these illnesses cause memory loss. I am pretty sure both of these deplete the body of acetylcholine. Phosphatidylcholine is a good fat that is broken down into the neurotransmitter acetylcholine. The tickborne bugs use this fat to form a lipid envelope which shields them from the immune system or as part of the cell wall.
Acetylcholine is the neurotransmitter that is involved with memory and the Alzheimer's drugs work kind of like SSRI's to keep more of the neurotransmitter in the brain. The problem here is that if the bugs are feeding on this chemical and you take drugs to concentrate it in the brain ..... well that can't be good.
The Alzheimer's drugs really do not have a very good track record as far as actually helping people despite what all the ads say. There is much medical literature linking Alzheimer's to brain inflammation and deficiency of B vitamins especially B12 among other causes -- both of these things can also be caused by Lyme and other tickborne coinfections.
The way I look at it is that you really don't have anything to lose by testing and treating for Lyme and other tickborne coinfections. As I said before, a herxheimer reaction to antibiotics is a sign that the antibiotics are working.
If you take the antibiotics for a month or two and have no response (good or bad) then maybe your husband really does have Alzheimer's -- but I would not rely on one doctor who doesn't know anything about Lyme and tickborne diseases to condemn your husband to a life of Alzheimer's -- the doctor is diagnosing this on a clinical basis without any bloodtest or other medical test to prove or disprove his theory.
If you had cancer would you want to wait and see if it gets worse? That's about as plain as I can put it. There is a very good probability that your husband does have Lyme and possibly other tickborne coinfections based on the history you previously posted.
I know what it was like waiting 1 1/2 years for the diagnosis for hubby because he was not aware of a tickbite and none of the first 20 or 30 doctors were smart enough to figure it out. It was definitely not fun and it cost an unbelievable amount of money that we could really use right now to treat the real problems.
I wish you well and can understand your frustration.
You asked the doctor some really good questions. I learned a long time ago from a doctor who couldn't help hubby but at least believed he was sick -- pay attention to the little things and if the diagnosis does not explain the symptoms then it is either the wrong diagnosis or there are multiple problems which have not yet been diagnosed.
The spinal tap will probably be useless if they use the hospital lab -- if you really want this done then I would at least get the kit from MDL or IGeneX and ask that a sample of the spinal fluid be sent to one of those labs also. They will not want to do this but maybe the lab technician will be nice and agree. Even then it probably will be a negative test.
Keep us posted.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Okay.....I called Dr. C's office today and they returned my call this afternoon! It just so happened they had an opening in two weeks, so I set up the appointment. I couldn't believe we were able to get in so quickly!
Apparently, they had a cancellation, other otherwise it would have been December. That made me feel so much better to know we had an appointment!
Then a doctor from igenex returned my call to them also. I was so impressed! I told them about my luck with the appointment. The doctor assured me that was the way to go....that we would receive the testing necessary.
I feel like we're really moving toward getting some answers now.
Thanks to all for the good information. Bea, I'm off to read your story with this illness now. Thanks for posting the link.
So glad you made the appt with an LLMD. I was afraid that maybe I might have upset you with my comments last night -- I was just a little frustrated with hubby's PCP and may have been a little grumpy in my response to you.
Your husband is lucky to have you!!! Although you have now found an LLMD you may still need to be tough when it comes to dealing with insurance companies and disability if that applies.
Keep us posted.
Sending healing thoughts your way.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Hey Bea......not upset at all. I'm not afraid of facing reality. I just don't think this neuro has it right at all, and he just seems to want to stop now, other than the spinal tap. (I've decided we aren't going to do that right now)
When I talked to the doc at igenex and told him we had the appointment, he said I needed to check with Dr. C and see if we needed to request any test kits. (gave me the numbers for starter kits) I wonder if I need to do that, or if they'll do the testing there. Anyone know? I don't want to make a pest of myself with the doctor before our first appointment.
Bea, I read your story. My God, you're a tough lady. I can't imagine going through that for so long. God Bless.
Posts: 30 | From Tennessee | Registered: Sep 2005
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WildCondor
Unregistered
posted
That doctor did not know what they were talking about. The blood titer doesnt mean anything as far as saying you don't have Lyme. Spinal taps are also very bad for diagnosis and only tend to show neuro-lyme less than 20% of the time. You best get to a good LLMD and get a solid opinion on your situation. Email me if you need help finding a doctor. [email protected]
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Thanks Wildcondor......appreciate it. We were able to get an appointment with an excellent doctor, as I understand it.
I just don't understand why these neurologists don't want to be more helpful in finding real problems. Pitiful.
Posts: 30 | From Tennessee | Registered: Sep 2005
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