New to the forum and really need your help !!!!

Hello everyone,
I am new to the forum. I came across this group while searching the internet for information on Lyme disease to help my mother. I am hoping those of you that have experience with this disease will be able to provide some much needed insight. I will try to condense this as much as possible but still give you all the pertinent facts regarding my mom's health. My mom is a 78, lives in New Jersey and is a widow that lives alone. There are four of us kids and we are very involved in our mom's life. Not only do we speak to her daily but both my sister and I who are retired each visit overnight with her every week. My brothers also visit her frequently on the weekends.

Last summer my mom was totally fine and healthy. She was always quite active for her age always busy reading, doing puzzles, gardening, taking care of her little dog etc. Then last September things started to change. She started complaining that her legs hurt which the doctor chalked up to wearing sandals all summer. Next she started experiencing chest pressure and was hospitalized. A chest CT scan, stress test and ultra sound of her legs showed everything looked normal. She continued to feel poorly and also was having a very difficult time sleeping. Her primary doctor prescribed a sleep aid that did not help at all. The doctor then started to think that maybe she was suffering from depression and prescribed an antidepressant for her.

Her symptoms got worse as she started complaining more and more of aches and pains, headaches, dizziness, night sweats as well as exhaustion. Her whole personality started to change with intense anxiety, emotional outbursts etc. She was hospitalized a second time in December for dizziness yet the doctors found nothing. At this time we started to think that maybe indeed something was going on emotionally with her so we took her to a psychiatrist. He diagnosed her with severe depression and anxiety and put her on a variety of antidepressants over the course of four months that absolutely did not improve her depression one bit. Yet her physical symptoms continued to get worse. The psychiatrist then recommended having her hospitalized and doing electro shock treatments on her brain. After watching a video on this procedure we decided there was no way we could subject our mom to this treatment.

In April I decided to switch my mom's primary doctor and when we saw her I explained everything that had been happening with my mom. I asked her to please see if she could run some tests to determine if there was something else that was causing her depression that we were missing. She ran a ton of blood work and also sent my mom for a CT of the brain. The results showed that my mom tested positive on the Western Blot for Lyme disease. The test showed that it was an older infection and not a current one which made sense given she had been ill for months. The IgG bands that tested positive were 18, 23, 39, 41, 45, 58 and 66. No one ever thought of testing her for Lyme disease until this new doctor was seen. My mom does not recall ever being bitten by a tick nor does she recall seeing a bulls eye rash. She was given a script for 28 days of Doxycycline. She also recommended that we see an infectious disease specialist. The CT scan showed that my mom had a small stroke at some point but otherwise nothing unusual.

We saw the infectious disease specialist who felt my mom should have an MRI as well as a spinal tap. She said the spinal tap would give us a definite answer as to whether the Lyme had penetrated her brain. She also referred us to a neurologist because she wanted to be sure there was no other issue going on with the brain due to the stroke. We saw the neurologist who after examining my mom said she showed no sign of any kind of dementia or Alzheimer's. My mom had the MRI as well as the spinal tap. We followed up with the neurologist who informed us that my mom's brain was very healthy for a woman her age. The test showed there was no Lyme in the brain and no MS or cancer of any kind. Of course I told him that she still feels awful even after taking the antibiotics for 28 days. He responded that she may need another round of them or some other drug but he does not treat anything other than brain disorders and we should see the infectious disease doctor for further treatment.

Last week we had a follow up appointment with the infectious disease doctor. She basically said that even though my mom exhibits symptoms of chronic Lyme disease, she feels that 28 days of antibiotics was sufficient treatment and giving her any more drugs of any kind would be detrimental to her health. She implied that her symptoms may be more due to depression and suggested that maybe she needs a different antidepressant. She also recommended that we see a neuropsychologist who would better be able to distinguish if her symptoms are due to physical pain or emotional distress. We have an appointment scheduled with the neuropsychologist tomorrow. I did ask if it would be a good idea for my mom to see a naturopath to maybe help build up her immune system. The doctor responded that she would not recommend that.

The bottom line now is that my mom continues to feel sick. She still complains about all the symptoms that I mentioned before. And while she may have a better day here and there, for the most part she is spending the majority of the day in bed because she feels exhausted. Other than getting up to eat or let the dog out in the yard she is doing absolutely nothing. She says she fears even walking the dog because she is constantly dizzy. She is like a totally different person now going from being an active vibrant woman to a very meek weak individual.

I know from reading about Lyme disease that there is a great deal of controversy in treating it. It seems when it is caught early that a month's worth of antibiotics is the standard treatment. Yet in my mom's case based on when her symptoms started, we think she had it for around 8 months before finally being diagnosed. It is hard for me to believe that after the Lyme caused such havoc in her body for 8 months that a course of antibiotics solved all her issues. My husband gets chronic sinus infections and sometimes he needs to be on antibiotics several weeks just to get rid of a simple sinus infection. So how do we proceed from here? I have read that it is important to see a Lyme literate doctor. I would be most appreciative of any advice you may have as I am so frustrated at this point. I just don't know any more if it is truly the Lyme that is causing all these issues for my mom or if she really is just suffering from depression.
Thank you,
Nadia

Also, since you are new here, it would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?..Start here". It's full of good information

Something your mom could start now while waiting to see a LLMD - is detox.

She needs to start getting into a good detox regimen...to flush out the toxins that is caused when the bacteria dies-off.

Here is a link to a great website of detoxing:

www.tiredoflyme.com/detox-methods.html

Thank you so much for your responses. Looks like I have a great deal of reading to do to educate myself about this disease.

Nadia--

I also wanted to welcome you. Your mother is suffering, no doubt. But she has WONDERFUL children and you and your siblings have already done so much for her. I know you're still searching for answers but in reality, you have also obtained a lot of "answers" (in other words, you and the MDs who have seen your mother have eliminated many other possible causes for her lyme symptoms).

Girlie and Traveler have already provided really good info to get you started. It's a very long and winding road you're on but this site will become an invaluable resource for you and your family. We invite them to stop by, introduce themselves and please ask any questions you have. Lyme disease affects the entire family. But she is in wonderful hands and you're in good company, here.

-p