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Questions about lyme disease symptoms and treatment

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Posted 11/27/2010 2:07 AM (GMT 0)
My mother has some symptoms that sound like they may be Lyme disease, and I'm concerned she's not getting the proper diagnoses or treatment. I was wondering what other people think about her symptoms:

- she has "sixth nerve palsy" down her left side.

- severe double vision. The worst "lazy eye" I've ever seen, to the point that she's having trouble seeing and can't drive at night.

- imbalance, trouble walking

- numbness in the feet

All symptoms started around 2006 and have gotten progressively worse to the point that she's having trouble walking and generally functioning. She's 74 years old but is otherwise extremely healthy.

She's in a fairly tick infested area of upstate New York. Take a walk in her backyard and you could easily have 10 ticks on your pants.

In May 2009 she went to Albany Medical Center in New York where they ran some tests and concluded that she didn't have Lyme, but found that she had erlichiosis and babesiosis. In June 2009 she went to Einstein Medical Center (again in NY) where they came to the same conclusion.

They administered IV doxycycline for 4 days, then for 2 weeks orally afterwards. She then went back to Einstein where they concluded that the erlichiosis and babesiosis were gone. However, none of the symptoms changed: she still had the severe double vision and the sixth nervy palsy and imbalance. In fact not a single thing improved.

I googled her symptoms, and found lots of articles saying these are textbook symptoms of Lyme. The problem is I can't find any good information about how exactly to diagnose and treat it.

We're in upstate New York, but would be willing to travel anywhere for the right specialist.
Posted 11/27/2010 2:24 AM (GMT 0)
I would suggest that she go see a LLMD to be evaluated. There is a highly recommended LLMD in your area, I will send you a message. Sorry to hear that she is having so many problems, hope you get some answers soon.  Jeff

Posted 11/27/2010 4:32 AM (GMT 0)
Wrybread, I'm very sorry about your mother's condition. I know that must be a LOT to take! I want to note here that my Dr stated that when Lyme diagnoses are questionable, having co-infections is almost proof positive that they have Lyme. Not in every case, of course, but the percentages are very high.

In your case, I believe Lyme is highly suspect as the culprit.

People, correct me if I am wrong, but it does not appear that the co-infections remain chronic unless they exist w/ LYme, and that it is Lyme that causes them to become chronic.

Post Edited (+Lyme) : 11/27/2010 9:26:30 AM (GMT-7)

Posted 11/27/2010 10:49 AM (GMT 0)
Hi there Wrybread, sorry that your mum is struggling with whatever is wrong with her. LD is so difficult to dx so find an LLMD asap, your mum's symptoms could be Lyme related but babs can also cause some unusual problems. What bothers me a little is that when they dx babs they gave your mum Doxy (?) I'm no expert, and other members might put me right but I wouldn't have thought Doxy is the best drug to use on Babs.

Here's what Wiki says....

Treatment
There are several ways to manage and treat Babesiosis in animal. In many cases, patients spontaneously recover having only experienced mild symptoms undiagnosed as the disease. This occurrence is almost always seen in B. microti infections, which are generally more common in the United States. For B. divergens and more severe B. microti infections, the standard treatment historically for symptomatic individuals was oral or intravenous Clindamycin with oral quinine. With the results of research completed in 2000 however, treatment regimens have been increasingly leaning towards oral Atovaquone with oral azithromycin. The latter medications are preferred as they are equally effective and exhibit fewer associated adverse reactions.[14] In severe cases, blood exchange transfusions have been performed to lower the parasitic load in the individual. Other rudimentary treatment measures include addressing and correcting abnormal clinical signals.

Good luck with finding that LLMD.

Mik.
Posted 11/27/2010 10:51 AM (GMT 0)
Sorry I meant to say that Doxy (in my opinion) is probably NOT the best drug to use.
Posted 11/27/2010 4:31 PM (GMT 0)
Mik, my Dr said the same thing. He said he has seen abx resolve Babs, but that could possibly be because as the Lyme is cured, the body is able to handle the Babs.

He gave me 2 choices: Mepron or Malarone (I think that's the name of the 2nd one). I take Mepron w/ food and have had no bad effects, unless my wigging out was some type of mental/emotional herx. Mepron is extremely expensive. It is only $35 w/ my co-pay but Dr said w/o insurance it is about $1500 per month. Ludicrous, huh?

My Dr has great faith in Mepron. (what Mikazmat named could possibly be the generic?)

I still think the chances of her having Lyme along w/ these is pretty high. I believe more tests should be in order. It might be helpful if we could know what tests she had and what kind of numbers. AS we all know, some tests are passed off as negative, when they really do indicate lyme. ANy way you could get these, wrybread?
Posted 11/28/2010 9:29 PM (GMT 0)
I am not a doctor but from what I have researched, your mother has been incompletely diagnosed and under-treated. I second the suggestion that you consult a lyme literate doctor. With the right treatment she could see her way back to good health. Good luck!
Posted 11/28/2010 9:38 PM (GMT 0)
InfectedinFL - thanks, I'd love to know the name of that doctor. If you PM'd me, I can't figure out how to receive it. Maybe email me at wrybread at gmail dot you know what?

Also, is there a reason people on this forum and others don't name their doctors in their postings? I would think this would be an excellent place to discuss and refer doctors. Why the secrecy?

On Monday (tomorrow) I plan to call the Columbia Lyme center in NYC: http://www.columbia-lyme.org/ .

Also Dr. Bernard Raxlen.

Thoughts? Any other recommendations in New York, either city or elsewhere? Or recommendations elsewhere in the country?
Posted 11/28/2010 10:56 PM (GMT 0)
Hi Wrybread,
Welcome to our forum >I am so sorry to hear of the issues your mother has been having to deal with! My Mom is 71 & fortunately in very good health - I'm the one with the tick-borne infections.

The reason we don't use the drs names on here is because the Government likes to take these good docs licenses from them basically because of the usage of long-term abx. We don't use their names openly in order to help protect them.

In order to set your profile up so that people can email you is to click on the "my profile" button at the top of the page. Then, click "edit profile" & you'll be taken to the page where you can enter your email.

In order to email others, just click on the envelope button under that persons' name. If they want have entered their email, it'll open up the mail program on your computer.

There have been some really great suggestions given here. Also be sure to read through the information in the thread at the top of the forum titled "New to Lyme?...Start here." as it is full of really good info as well.

Also, Dr. Joseph Burrascano is a very well respected LLMD (Lyme Literate Medical Doctor) by his peers and he has written a really great article titled "Advanced Topics on Lyme Disease".

Despite the fact that he only mentions Lyme Disease in the title, the most common infections are discussed, including erlichiosis and babesiosis. You can download this from here;

www.lyme-disease-research-database.com/lyme_disease_blog_files/burrascano-treatment.html

Hope this helps some...

Trav
Posted 11/29/2010 8:53 PM (GMT 0)
Thanks, I added my email to my profile.

Or if you'd like, its wrybread at gmail dot com.

I'm wondering if Joseph Burrascano is still seeing patients? If so, does anyone have contact info? I can't find him through google.

Or are there any other recommendations, ideally near New York City?
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