posted
Hi......I am new to this forum. Rather than ask questions here that I shouldn't because of lack of ignorance, could anyone please link me to a useful thread to read. I am pretty sure my husband has Lyme, and we're going to see a neurologist this week.
From what I've read, I need to request the "Western Blot" test? I'm sorry, I don't even know enough to ask intelligent questions.
Please direct me to an old thread that might answer my initial questions while learning.
Thanks a bunch! Much appreciated.
Posts: 30 | From Tennessee | Registered: Sep 2005
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posted
Hi, CMarie. I'm new, too, so probably have already asked questions that have been answered a million times. So far, everyone has been quite kind.
My doctor had me take the Western blot, then based on that, another to check for the various bugs that tend to come along with Lyme.
And now that my treatment has begun, I need to be tested once a month to make sure the antibiotics aren't hurting my liver, etc. Fun, fun, fun. But better than not being treated at all.
Best of luck to you and your husband.
-------------------- trying to figure it out Posts: 16 | From San Jose, CA, USA | Registered: Sep 2005
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posted
Thanks.......I'm still reading a lot on this site. I don't really know, but think my hubby has Lyme's. We live in the woods, and he gets lots of tick bites while out walking our dog and just enjoying the woods. He got several this last spring, no matter how much he sprayed with Deet. He does every year.
Over the last 3-4 months, he has really started having some problems. A few months ago, he wasn't feeling good, and said something about having a "tick bite". I didn't think much of it at the time. We even joked about it at the time. I feel horrible now to think I didn't take it seriously.
Over the last month, he has really lost his ability to think. It is horrible. He says he feels "pressure on the front of his head". He says it is not a headache, but just pressure or something. He describes it as a fog. We went to the Emergency Room this last Saturday, cause he said his head felt so bad. They did a Catskan, urine tests, blood work, etc and said he was physically fine. The ER doctor asked if there was early dementia in the family....there is not. I didn't think of anything like Lyme's until we got home. Darn it. When I looked it up, it really made me wonder.
They're sending us on to a neurologist. I'm supposed to call first thing in the morning. The thing that got me was I didn't realize how foggy his brain was, until I heard him trying to answer the questions from the folks in the ER. He had to strain to remember his birthday, the day of the week, etc. It freaked me out to see it. He's been kind of quiet, but I'm thinking now that he was covering things up a bit. I don't know.
He has a hard time thinking now...and has trouble talking to people in normal conversation. He also says he can't read anymore. It is all bizarre to me. The thing that gets me is he is only 58 years old.
Okay, I'll shut up now and read some more.
Thanks for any and all views and info. Appreciate it.
Posts: 30 | From Tennessee | Registered: Sep 2005
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posted
Moved up 2 links to the top of the Medical forum for you. The newbie links.
It definitely sounds like Lyme is a possibility for your husband -- actually more like a very high probability.
The important thing at this point is to be tested at the right lab. Unfortunately Quest or LabCorp are not very good for Lyme tests. If that is all the doctor will order it is a start - the best labs are IgeneX and MDL (Medical Diagnostic Labs). If the doctor (neurologist) you see is not familiar with these labs then he is not an LLMD (Lyme Literate Medical Doctor).
Ask the doctor what lab he will use for the testing. Go to your appointment with a list of questions which should include 1)lab to be used 2)which Lyme tests will be done 3)will coinfection tests be done -- babesia, bartonella and erhlicia can also be spread by the same ticks that spread Lyme disease 4)can you start doxycycline NOW while you wait for lab results -- dose needs to be 300 -400 mg daily if tolerated 5)how long will treatment last if tests are positive for Lyme disease -- 4-6 weeks is NOT long enough.
That's enough for now and it's past my bedtime.
Please let us know how the appt goes and what your test results are.
Welcome to LymeNet! Sorry your husband is sick, but you have come to the right place for help. People here are friendly and really do try to give good advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thanks to all!! Much appreciated! Appointment is tomorrow at 2:30 Pm. I wrote down the questions suggested...and now I'm off to do some reading.
posted
Well...we went to the Neuro today. He did a pretty thorough exam of joints, reflexes, etc. Asked some questions to test thinking...... hubby didn't do very well on those.
Doctor did listen to my thoughts about Lyme being a possibility. (I asked the his nurse if he had ever treated anyone with Lyme before the doc came in; she didn't know, but said he had ordered the tests at various times for people. She was about 25 or so, so don't know how long she had been his nurse) Anyway, I thought the fact that the doctor routinely ordered Lyme tests was a good sign....
He ordered an MRI to be done later this week, and various blood tests. He also ordered a "Lyme Titre" test. Will this be good enough for us to find out? I asked the Doctor that, and he said he could put a 3 inch needle in the spine to test?! I didn't pursue that ?
I asked if we could start antibiotics and he said he wouldn't do that until he knew what we were dealing with. He did send us home with 3 weeks of antidepressant?? He said it wouldn't hurt to take it....and might help if it was a depression problem. (I don't think it is; altho' he has been depressed about feeling so bad and confused)
So, we do the MRI this week and wait for results of test results, which he said could take two weeks... to get the Lyme test back.
Thanks for any and all thoughts..... (I forgot to ask him what lab they used..grrr!)
Posts: 30 | From Tennessee | Registered: Sep 2005
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It wouldn't hurt if you were able to get antibiotics for him.
Our story is 2 weeks after hubby pulled a deer tick off himself he went into full blown neuro lyme. He started treatment then, just 2 weeks after the bite. 25 months later and very aggressive treatment since then and he is still totally disabled.
Don't wait any longer. Do whatever you have to do to get antibiotics if at all possible. Every minute counts.
Wizard
Posts: 252 | From USA | Registered: Sep 2003
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posted
My advice is do NOT take the antidepressants. Many Lyme patients and especially the ones with neurological symptoms have bad reactions to these. They already have enough toxins in their brain from the Lyme etc.
For the 1st 1 1/2 years the doctors kept telling me my husband was anxious and depressed. I knew better, but he did take some of these meds which actually caused bad side effects and in my opinion were the main cause of his psychiatric admissions. They did not do anything for his real symptoms which continued to get worse.
He had nausea/vomiting/dry heaves and a Parkinsonian tremor as his initial symptoms and did not know about a tick bite so Lyme was not even considered as a possible diagnosis. Hubby was 45 at the time.
The MRI is not a bad idea -- it will probably either be normal or will show white matter lesions which are frequently caused by Lyme but are often misdiagnosed as MS.
The spinal tap comment by the neurologist shows that he doesn't know much about Lyme disease. It is only positive in a small percentage of patients -- I think it is something like 10%.
There are several people on this forum who have been misdiagnosed with alzheimer's. You might want to post a question in the medical forum with the word alzheimers in the topic. Memory problems and especially problems with reading and comprehension are very common Lyme symptoms.
The titre test is an ELISA test which is not a very reliable test.
In my opinion you need to start looking for an LLMD. You can post in the Seeking a Doctor section with the city or state in the topic. This is too important to wait and see. Unfortunately you may have a long wait to see an LLMD as there are too few of them.
You will have to be the advocate for your husband as he is too sick to get the help he needs. I used to be quiet and shy, but I have learned the hard way to speak up. Ask questions and don't give up until you get the answers you need -- even if that means arguing with doctors and insurance companies.
Ask around -- you may be surprised to find someone in your community dealing with this illness -- check out the support groups posted on this site -- over on the left under flash discussion.
Keep us updated and good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Well, I'm highly frustrated. So, you don't think the test will be accurate? Good Lord, what can I do to get this done right? Should I have asked for the needle in his back? I just couldn't do that.
I'm also frustrated cause the Neuro came across that the anti-depressant wouldn't hurt anything. You are saying it could make things worse? The Neuro told me that while waiting for these tests for two weeks, the anti-depressant would make him feel better.
Posts: 30 | From Tennessee | Registered: Sep 2005
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posted
The needle in his back is a spinal tap -- as I stated this test is not very often positive -- it is just not a very good Lyme test.
The antidepressant may or may not help with sleep or moods but in my opinion it will not help with memory problems caused by Lyme or other tickborne illnesses. For some people these help with pain but you didn't mention this as a major symptom.
Go back and reread my post and try posting some more questions in medical -- more people read that forum. You could ask a question about the antidepressants there also to get more opinions.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Hi CMarie, Welcome to LymeNet. You've been given excellent info, but I understand how confusing it can still be.
Your husband knows he's had tick bites & now he has typical Lyme symptoms, so he probably has LD. Considering he "gets tick bites every year", it's also possible that he's had LD for some time - possibly years. His immune system may have kept it under control till this summer.
That's what happened to my father. We don't know how many years he had Lyme, but when he had noticeable symptoms, they were mostly neurological. He was misdiagnosed with Alzheimer's in his 70s. At the age of 81, a LLMD in New Jersey said he had Neuro-borreliosis (Lyme affecting the central nervous system).
Your husband should be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP. Unfortunately, there are few available & it takes a while to get an appt.
Go to Seeking a Dr here on Lymenet. Put your location in the title & info about LLMDs will be e-mailed to you.
Call for an appt. Explain how quickly he has developed neurological symptoms & see if they can work him in. If not, ask if they have a cancellation list. This may get you in sooner.
In the meantime - Since he probably has Lyme disease, he needs to start treatment as soon as possible. Do you think any of your drs would be receptive to reading info that comes from the doctors who are most knowledgeable about Lyme?
I highly recommend the links that Cheryl gave. Go to http://www.lymeinfo.net Scroll down to "Great LD Links" Click "ILADS Lyme Disease Medical Guidelines". Excellent source of info for drs & patients.
Print 2 copies (9-10 pages long) You can highlight facts that pertain to your husband's case. Page 4: "Treatment Considerations ...Antibiotic therapy may need to be initiated upon suspicion of the diagnosis, even without definitive proof...." Page 5: "Dosage Increasingly, clinicians recommend that certain drugs for Lyme disease be given at higher daily doses..." Page 6: "Empiric Treatment" etc, etc.
Keep a copy & give a copy to the dr that you think is more likely to be receptive to new info. Hopefully, he/she will be willing to start treatment now.
Go to www.ilads.org On the left, click "Basic Info" Print both pages. # 5-8 discuss problems with Lyme tests. #6 "The ELISA test is unreliable and misses 35% of culture proven Lyme...."
You may be lucky & get a positive result, especially if a lab was used that specializes in Tick-Borne Diseases (TBDs).
Keep in touch & ask as many questions as you need to ask.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Your husband is very lucky to have you!
Just my opinion: most neurologists are totally worthless when it comes to identifying Lyme Disease.
You have been offered a lot of information and links to articles that will help you figure it out.
Again, my opinion: Sounds to me as if your husband has a case of neurolyme. He really needs to be seen by an LLMD (Lyme Literate Medical Doctor) and put on a course of antibiotics after screening by IgeneX Labs for co-infections so you will know exactly what you are battling.
GOod luck. Get him to a doctor who knows tick borne infections.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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As someone who was put on anti-depressents for Lyme once said to me
"They just make me feel better about feeling like crap!"
They can indeed cause serious problems for someone with neuro Lyme. But then the neurologist wouldn't know that since he doesn't know much about Lyme, obviously.
Unfortunately, you will find this to be a battle and you will have to go to war against the medical professionals.
Another piece of advice is to keep a log of all symptoms daily and anything that happens that seems out of character for him. It will be helpful for the LLMD to zero in on some of the problems.
Good luck, feel free to send me a private message anytime. We have been there and it isn't any fun.
Wizard
Posts: 252 | From USA | Registered: Sep 2003
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posted
Thank you for your responses. I appreciate all the info.....and I'm kind of stunned after reading them.
I cannot imagine that it is so hard to find out if that this could be what my husband has. Why on earth is it so difficult? This is beyond me.
He goes for the MRI on Tuesday, and then back to the neuro on Thursday for some results. I don't know if they'll have the Lyme tests back yet. From what they said yesterday, I doubt it.
I will do some reading on neurolyme. Thank you all for you insight and info. I really appreciate it.
Posts: 30 | From Tennessee | Registered: Sep 2005
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