Lyme Disease Support Group

(1) to sugggest to people who suffer chronic unexplained symptoms with another potential option to investigate; (2) seek feedback on successful treatments for lyme disease; and

3) open a discussion of support for those individuals who seek to participate in sharing ups and downs of this path.

I am from the east coast but since relocated to the midwest. My symptom journey started 6 years ago almost to the day, a year after leaving the east coast. I do not recall ever seeing a tick or having a rash.

My initial symptoms at the age of 29 included facial tingling, muscle tension and twitches, brain fog, inability to focus, inability to sleep, anxiety/jitters, loss of appetite/digestive problems (probably b/c of the anxiety), and general inflamed/sick feeling.

It devastated me at the time because it interfered with my ambitious agenda and because it was plain scary. I did not know where to turn. I was diagnosed with a virus based on the symptoms and told to wait it out by my PCP at that time.

I do not recall being tested for lyme disease at the time but was tested for pretty much everything else, including a diagnostic brain MRI. Everything looked fine.

I swtiched doctors and started to work with a medical doctor who practices intergrative medicine. She did not think to pursue the lyme disease test at the time -- my symptoms were no longer as severe and she thought that whatever devasteted me for three months prior threw off my system so she focused on rebuilding me through acupuncture and supplements.

At the same time I also worked with a chiropractor and nutritionist to alleviate the muscle aches and to make sure that my system was properly supported. It took months but I felt that my body was on the mend with occasional, mild flare ups.

I was convinced that I had early stages of an auto-immune disorder but there was not enough evidence to support that. So I focused on what I was able to control: diet, exercise (yoga and running), guided physician's support. The steps I was taking were working very well for me.

Within 7 months after the onset of symptoms I felt and was well enough to become pregnant. I was also back to finishing my graduate degree. I continued to have flare ups from time to time but as long as I ate well, did my yoga, slept enough, and kept the more instense stress away, I was able to sustain a great quality of life.

I had a very normal pregnancy. Everything went great except I crashed after the delivery. I went into what was attributed to mild post-partum depression with some other symptoms (muscle pain).

Within 6 months I felt better again and continued on for 4 years feeling mostly very well, happy and healthy with occasional "flare ups" that I attributed to being a working mom. I even ran two half-marathons in the last couple of years and exercised regularly.

Feeling good, however, made me take it all for granted so I allowed myself to subject myself to very intense professional pressures. Things boiled over again in July of this year. After 6 years since the onset of the first symtpoms, they started up again.

This time it started with high anxiety and panic attacks. I went back to my doctor. We tested my neurotransmitter funciton and found that my adrenal function was diminished, providing an explanation for the anxiety. The question remained, what was causing the chemical disaray?

Three weeks ago we decided to test for lyme disease. We submitted my samples to a traditional lab and to Neuro Science (NS) labs for analysis.

NS utilizes a much more comprehensive test and arrives at a recommendation based on cummulative analysis in consideration of the criteria set for the diagnosis of the disease by the Center for Disease Control.

The traditional lab gave me an overall negative for lyme disease based on the test they employ, albeit one band was reactive. A more comprehensive analysis by NS found that I have an "early" or "waning" stage of the disease and that by CDC standards I am positive.

I learned this just 5 days ago and words cannot explain the feeling of finally having an answer after 6 years -- obviously mixed -- excited and relieved to finally understand but apprehensive about what that means for the future.

I have been very fortunate that I was able to get my symptoms under control and functioned happily for many years without reoccurence of symptoms except in instances of extreme fatigue or stress.

Since the return of the symptoms in July I have worked with my doctor to address the adrenal havoc presumably brought about by the the Lyme.

We have done so through dietary supplements. Also, much like I have heard expressed by other folks on this forum, my system is very sensitive to certain foods; I have never eaten much of processed food but during a flare up, my body has no tolerance for it at all.

I cook everything from scratch and snack on nuts, fruits and granola. Ironically my habits have reverted back to very healthy ones as compared to those that quickly develop in the daily race absent the body telling you that you need to re-evaluate.

As for treatment, my doctor is recommending a dose of antibiotics and feels confident that we can knock this out.

What I hope to do by sharing this story in such detail is to bring hope to individuals who find themselves with or without a diagnosis (but have lyme suspicions) and share what alternative ways to manage symptoms have worked for me.

I am not sure yet what the outcome of the treatment will be. I feel thankful for understanding a reason for my symptoms which have plagued me on and off for 6 years.

I would be grateful to hear from anyone who has had treatment and your experience with it. I would also be happy to share more detail about the various therapies and lifestyle changes that have helped me keep a very high quality of life (albeit with some bumps in the road).

I look forward to any comments/discussions. Thank you for reading my thesis.

Post edited by: Thankful, at: 12/16/2011 05:44 AM

I was diagnosed after seven years just a few months ago. I'm on two separate antibiotics and antiviral medications along with many other supplements and pro-biotics (20 pills a day!!). My main focus now is my health, however it's hard to keep busy throughout the day without getting exhausted. All I want to do is lay in bed. Have you found anything that keeps you going? I'm going to try journaling..

Eating a clean diet, keeping stress to a minimum, and supportive therapy, including exercise definitely help in dealing with Lyme. They all support your immune system and help the body keep the infection in control.

Unfortunately, Lyme is progressive - as the infection grows and multiplies within the body, the chance of it overcoming your immune system also grow. When that happens, the symptoms progress and get worse.

I am glad you are getting treatment. Please know that a short course of antibiotics will not do the job, though.

I recommend requesting an LLMD in the thread for those requests, so that you can get the care you need.

You are right about my doc -- she is not a LL doc. However, I have since read the ILADS treatment guidelines cover-to-cover 3 times which propmpted me to seek out an LLMD.

To give my doctor credit, she is the first one who didn't think I was losing my mind and kept working to get at the root of the cause of adrenal imbalances, infertility, brain fog and all other related nonsense.

Also important about my current doctor is that she listens. I think her approach is more -- let's go with the basic recommendation and then start working out if we have to keep going.

She is optimistic but perhaps I was more optimistic in what I heard -- so, I am now prepared to remain on treatment for a lot longer than initially thought. Be it with this doc or the LLMD (going to see her in mid January while continuing my treatment now).

Thank you again for tuning into my story and I hope that you are on the mend.

Best wishes!!

Did you also have your child tested for Lyme disease?

it sounded like you thought you may have gotten infected, but not treated until after you had your child...?

I was just diagnosed several months ago. Everyone on this site is awesome and so helpful!

I swear I don't think I would have gotten as far as I have already without their support.

I complain all the time and everyone still listens and responds.

I am on my second type of Abx now. On the first ones I went through three herx severe reactions.

After about a month some of my symptoms started to disappear.

Ex: Blurred vision, back pain, knee pain, gastro problems, food allergies, sinus problems, itchy skin.

I have started doxy about a month ago and everyday I wake up I feel like someone beat me with a baseball bat.

I don't think the doxy is strong enough for me. All of my pain came back plus more but my anxiety has improved.

I just started taking readisorb glutathione and it seems to be helping with my pain, and L-Serine which seems to be helping my tremors.

I also have to stay away from gluten, but I think everyone with lyme has a problem with it.

Hope you feel better soon. We all know what you are going through.

This is the only place I could find where everyone can relate to everything you are going through and I am so greatful!