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Old 09-07-2005, 07:01 PM   #1
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saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

I just saw Dr. Horowitz in Hyde Park. He did an extensive review of my medical history, lyme tests and mri/spec and he has confirmed my dx of lyme disease and said I am a "classic case of chronic neuro lyme" and he was very surprised that other drs did not pick up on it sooner, but he acknowledged that most are not Lyme Lit. I did hear from someone that Horowitz is quick to diagnose Lyme, but I do agree with him on the dx as it explains almost all my symptoms. He is recommending neuropsychiatric testing. he is also strongly recommending a spinal tap. He said he does not recommend this for all patients, but due to my age and the extent of my memory/cognitive problems, he wants to do it if I agree, also my insurance company is very difficult with oral and IV abx and the more proof the better, but he did explain that the test could be negative. I know some people have said spinal taps are a "no no" with lyme, but horowitz is recommending it in my case.


Anyway, he feels that I do not have chronic fatigue syndrome, a diagnosis I had for almost 10 years and that I have been sick from the lyme and the lyme has caused my other symptoms due to supressing my immune system. So, I am confused but kinda relieved to have a more definitive and substantial diagnosis.

Dr. H was great!!! I am still finding it hard to believe that I have lyme- i always thought I did, but never had a dr believe me or even look further. he is starting me on doxycycline and plaquenil for the cystic forms and he is doing more testing for several coinfections.

I just started the doxy tonight. I heard some people herx from it. Not sure when the herx will start, if at all, but I am a bit nauseaus even from one dose.

I will give another update as I progress in my treatment. I have so many questions and am overwhelmed at the moment!!

-Nancy

 
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Old 09-07-2005, 07:36 PM   #2
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Hi Nancy. I know it is a big relief to finally get some answers!

I am so glad you have seen a knowledgeable doctor and that you like him. It is good that he tested you for the co-infections also.

What dose of Doxy are you taking? A few tips: Do not have any diary, iron or magnesium products two hours before or after the Doxy, or it wil lnot be absorbed properly. If it makes you nauseous (sounds like it does) eat something substantial and non-dairy before taking it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful. Whenever you take antibiotics, make sure you take high-quality acidophilus capsules. This replaces the good bacteria and helps prevent yeast overgrowth. Good ones to get are those that are refrigerated. Most healthfood stores have them.

Are you familiar with the Jarisch-Herxheimer Reaction?

 
Old 09-08-2005, 05:09 AM   #3
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Trying to bring thread up. For some reason my previous response is not showing.

 
Old 09-08-2005, 06:20 AM   #4
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

thanks Ticker.

I think you were the one that recommended Dr. Horowitz to me and I thank you so much!!!! As I said in my last post, there was someone who said Horowitz was quick to dx lyme, so that scares me a bit, but the fact that I do agree with him is comfortingl. My mom said I should go to another LLMD to get another opinion, but as far as I know Dr H. is one of the best!!!!

-Nancy

 
Old 09-08-2005, 06:23 AM   #5
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

ticker-

I am taking doxy 100 mg 2 capsules 2 times a day. Is this alot to start out with. Also, how long does it usually take to get the herx? One last question since you seem to be so knowledgeable about lyme (sorry, this is unrelated to this post, but...) Dr H is strongly suggesting a spinal. Others have come down on spinals in prior posts. What is your view? He admitted he doesn't order them for many people, but wants one in my case.

Thanks,
Nancy

 
Old 09-08-2005, 06:24 AM   #6
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

he also started me on plaquenil he said for the cystic forms-(and some supplements) i haven't started that yet, i am starting stuff one by one so I know the reaction and don't get confused as to what is causing what.

 
Old 09-08-2005, 02:46 PM   #7
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Hi, Nancy:

I had a spinal tap 5-1/2 years ago and was one of the 5% who did have the antibodies in my CF. (unfortunately, the neurologist dx'd me w/Alzheimer's but referred me to an I.D. specialist who referred me for 4 weeks Rocephin i.v. and said she could not help anymore with my relapsing Herx sx's as I was "CURED" after the i.v.)

Also, I went to a 5th neurologist who referred me to a -psychoneurologist who did the testing after multiple positive SPECT scans and said I did "poorly" on Cognitive Processing", so I am now doing 3 months of weekly "rehab" to learn to work with my poor ol' brain and its "black hole"....LOL Might be worth trying in your case....

 
Old 09-08-2005, 03:04 PM   #8
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

wow Gerri, so sorry you went through so much. Can U ask, how long were you sick before you had the testing?

So, I guess I should go through w/ it?? Maybe I will be among the other 4%!!

hope you are doing better!

-Nancy

 
Old 09-08-2005, 04:38 PM   #9
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

LOL, Nancy! Well good luck in joining the "select 5%"...Just kidding! Not a group one wants anyone to belong in....

I was "sick about 9 years (when I first started losing my memory (and my job because of it) before I went to a neurologist....
I've been to 4 others since then.....

I'm not saying you should or shouldn't have the spinal tap....for me, it was a breeze and in "those days" it was hoped to yield more information. I'm not up to date on how accurate or what they expect of the results now.

Kind of like SPECT scans and Pet scans which show the activity of the brain, in that mine have always been progressively more positive, but I've heard and read that they can be notoriously inaccurately read or misinterpreted or technically not done well and more unreliably looked at if they're done at ifferent places. Most LLMD's still go by clinical symptoms (as well as my neurologist and psychologist who tested me)....they all instantly ruled out the Alzheimer's dx.....

Last edited by outinthe_woods; 09-08-2005 at 04:45 PM.

 
Old 09-08-2005, 05:16 PM   #10
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Nancy

You must be so relieved that you have found a Dr you like and is knowledgable.

I just wanted to chime in that I have had 2 spinals and neither showed Lyme. The spinals were not bad at all, they give you a shot to numb the area first and you shouldn't feel a thing. It is inconvenient because you are at the hospital all day as you have to stay in bed after the tap for 4 hrs. I had a headache afterward for several days which was a pain but is common. I also sent spinal fluid to Igenix as well as the hospital doing their own lyme test and both were negative. My IgM western blot at Igenix was positive. I was disappointed w/neg CSF as I thought this would give me definite answers (I have since learned there is no such thing when it comes to lyme) I would find out what else they expect to find out from the spinal. If it is only Lyme, blood is easier and more accurate.

I just wanted to let you know what my experience was. Let us know how
everything goes. I am happy that you are starting meds and will be on the
road to recovery.

 
Old 09-08-2005, 05:39 PM   #11
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Lymegirl-

I am sorry you didn't get the results you were looking for. I am starting to think maybe I shouldn't have it done if most are negative. What do you think? The dr said if it IS positive, it would be a good finding, especially for the insurance companies are screwed up as that sounds!!!! ;-(but afterall, they do rule the medical world!

-Nancy

P.S. My IGM was also positive from Igenex, IGG negative. How long have you been sick w/ lyme?

 
Old 09-08-2005, 06:26 PM   #12
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Hi Nancy,

I had a spinal tap a little over a week ago now and go tomorrow to get my results. My Neuro should also let me know how my MRI's were. The spinal was a cinch. I was not kept in the Hospital though. As soon as she was done taking the fluid, I was told to roll over and lay flat then about 5 minutes later the nurse said to get up, get dressed, take this form to the lab and have your blood drawn!!!! So I got up, got dressed and went downstairs and gave yet MORE blood. From there my husband drove me home(about 10 min. ride) and I went to bed for 24 hours. My head didn't bother me at all during that time. It was the rest of my body that was screaming! Laying still for so long with arthritus isn't a good thing................anyway, I went through with my spinal with my 2 boys in mind. If there was anything else seriously wrong I wanted to know. They are still very young and I want to be around for them. I know deep in my mind (when it is working that is) that it will probably be negative for neuro lyme but at least I got that test out of the way. I have been on doxy for approx 33 or 34 days now and honestly, I have been feeling like a new person. The only type of herx I had was sadness : ( Weird, I know but that is what happened. Oh yeh, the second night after starting the doxy I slept for almost 13 hours. If that is part of herxing then by all means BRING IT ON!!!!

Anyway, let us know how you make out in the next few days would you? I am only on 200 mg a day and that seems to be working. Also, I haven't taken any other types of vitamins or anything. I just try to make sure I have 3 balanced meals a day and try to move around as much as possible while at work.

By the way, you said the Dr. was in Hyde Park? What state? That is if you don't mind me asking.

Take care and have a great night.

Wendy

 
Old 09-08-2005, 06:49 PM   #13
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Nancy,
If it were me (or rather my 14-year-old daughter, who is the one with Lyme), I would probably try to have another conversation with Dr. H to express my reservations and understand better why he wants to do it in your case. I question the rationale of doing it for insurance purposes. If a positive result would be good for insurance coverage, isn't there at least a chance that a negative result would be bad for insurance coverage? If only 5% come out positive, it seems the odds are that yours will be negative. It sounds like you've found a great doc and I can understand wanting to follow through with what he's recommended. At the same time, if he understood your reservations, he might say it's not that important and spare you both the angst and the procedure.
Just my opinion, for what it's worth.
Good luck whatever you decide,
Lesley

 
Old 09-09-2005, 06:00 AM   #14
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

two things:

Dr H wants doesn't only want to do the spinal for insurance purposes. If that was solely the case, I would strongly hesistate. He did not likewhat he saw in some of my symptoms, particularly having to do w/ my short AND long term memory loss, disorientation, etc. He said he seemed to be quite severe. Also, as far as the insurance issue, my insurance won't even consider IV w/out a spinal- positive or negative, but I understand your thinking on that.

-Nancy

 
Old 09-09-2005, 02:28 PM   #15
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Re: saw LLMD- Dr Horowitz- he definitely feels I have chronic neuro lyme!

Nancy

You're getting a variety of opinions on the spinal and I hope it's not making your decision harder. I agree with Lesley that if you get a negative (and only about 5% are +) then that could work againist you. I don't know if we're allowed to say who our ins co is but I was gearing up for a fight, but when my neuro ordered IV for 3 months they approved it right away. I don't know if it has anything to do with it but my in network neuro ordered it instead of my out of network LLMD. My neuro knows the LLMD and he will cooperate with my/her requests (I'm sure as long as he's in agreement w/treatment) I'm lucky that he is open minded, but I am the go between and it's alot of work on my part but well worth it. Does your LLMD have an neuro associate he could refer you to (in network) for a similar situation? Sometimes I wonder with all I've read, if the insurance co are not taking the LLMD seriously and if that effects the treatments they'll approve. I don't know if that's how it works but I'm kinda cynical as I think the ins co & drug co run the world.

What are your symptoms? I was dx w/ MS 6 yrs ago and also recently tested + w/Igenix on WB IgM and - on WB IgG. All my symptoms are neuro. I've been on the IV since 8/15 and have seen some slight progress. Reduction of stiffness in my jaw and legs, but I've got a long way to go.

Let me know what you decide and how you are doing. Have a great weekend!

K

 
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