MDJunction - People Helping People
 
Ask a Question
05/28/2013 10:25 AM

NDPH update - I have been diagnosed with Lyme Disease

gwapito424
gwapito424Posts: 77
Member

I had a Lyme test done at my doctor about 6 to 12 months into my headache and it came up negative for Lyme. The headache started 2.5 years ago in 10/2010 and has been with me every minute since, caused me to lose my job 5/2011 and combined with the photosensitivity (and a list of other symptoms) I have spent most of my waking hours in a darkened room in a finished basement since that time.

Since the test was negative I didn't think much more about Lyme, but it kept coming up and my sister learned about how important it is to go to an LLMD and to get the bloodwork read by a company that specializes in tick-born disease (we used Igenex), so I found an LLMD, got tested and I am positive for Lyme and have been diagnosed with Bartonella (the doc says that I may have Babesia as well and plans to check for it at a later date, once we start getting things under control. I asked if he thought that I could get back to work in 2013 and he thinks that it probably won't happen that quickly, but hopefully I can likely get back to some kind of regular life sometime in 2014.

I am both relieved to know something concrete and scared of the diagnosis (the treatment and the long-term effects). Now I understand why my condition has continued to deteriorate. I am on a strict diet, eating a LOT of organic vegetables, consuming little to no sugar or honey, avoiding additives, taking supplements and detoxing in preparation for a treatment plan that will start June 14th after my next appt with the doc.

I am hoping that this entry helps someone else here on this forum, as the good people on this forum have been supportive of me. Thanks everyone and all the best to all of my friends/fellow NDPH'ers

Jason

Reply

05/28/2013 10:46 AM
momdenise
 
Posts: 45
Member

I am sorry for your struggle up to this point. Happy to hear that you have an answer and hoping that the treatment is successful. I have not yet ruled lyme out in my daughter's case even though her initial test came back negative. I have been hesitating in having her blood sent to igenex as recent developments are leading us to believe that her headache may be cervicogenic... but we started her on doxycycline this week just in case. She has been complaining of flu-like aches on and off which is keeping my mind on the lyme. Her extreme muscle tenderness can also be a symptom from what I have read... Best of luck to you! If you have a moment and can remember back to the beginning... did you have any other symptoms other than headache?. Natalie is 8 months in now.. her headache started out very mild for the first four months with only one or two short spikes... but her spike is pretty much constant now...Her pain is all frontal and temporal - it never moves.

05/28/2013 10:53 AM
MaryR
MaryR  
Posts: 4120
Group Leader

Thanks for the update. Glad that you got a diagnosis (even if it is not the sort of diagnosis you would have hoped for) since it means that you can get treatments started and hopefully start to turn this thing around. I know treating Lyme is a daunting thing but it can be done and a number of people have been back to report improvements and eventually being headache free. I hope that you will follow a similar pattern. Don't worry to much if the headache takes a long time to feel the effects if you are seeing improvement with any of your symptoms (for some people the headache was the first symptom to come and the last symptom to go).

05/28/2013 11:04 AM
gwapito424
gwapito424Posts: 77
Member

Hi, I am happy to do what I can, thinking back is rough (I have trouble thinking back to yesterday haha). Background could be relevant, my mom and I almost died at birth (placenta previa or something like that) and I had headaches as a toddler or earlier, and migraines started shortly thereafter. I had migraines all my life (I'm 41 now), but not one since this headache started, just often feels like a migraine. Back to your question, in the months before this started I seemed to be getting some bad headaches now and then, including some migraines (or migrainish headaches) and suddenly, during a meeting at around 12:15 or 1230 this headache came rolling on, felt like it was turning into a migraine, so I went home early from work, and a few days later I was seeing my GP because I couldn't believe that I still had the headache. It was the primary symptom by far.

I think I also felt "sick" and my photosensitivity (which I had since childhood) was becoming worse. I started making mistakes at work soon after this started due to the difficulty of concentrating when the headache is there day and night (waking up often at night because of it) and my memory seemed to get worse straight away. I'll ask my wife when she gets home if she remembers other symptoms, I might just be not thinking clearly at the moment. Of course, over time I have added fatigue and depression to the list of symptoms....

I will add that my mom has also recently been diagnosed with Lyme and Bartonella (although didn't have the bloodwork done at Igenex for insurance reasons, something she regrets). She was very sick for a few weeks shortly before I was conceived and has had a headache since that time (42 years now). There is a theory in my family that she had Lyme since then and passed it on to me congenitally. She developed arthritis in her 30's and has fibromyalgia, restless legs, and other symptoms/diagnoses as well.


05/28/2013 11:05 AM
gwapito424
gwapito424Posts: 77
Member

Mary, thanks for the insight about the headache not necessarily going away immediately, that could help me a lot with perspective and hope as I begin treatment Smile

05/28/2013 02:00 PM
gwapito424
gwapito424Posts: 77
Member

I would like to add that one of the events that helped us consider Lyme was that in January I had a steroid injection in my neck with the hopes of reducing the headache and had one of my worst months immediately following the injection. My sister read that individuals living with Lyme tend to have negative reactions to steroids. This may be something for you to consider if you got worse instead of better after receiving a steroid treatment or taking steroids.

05/28/2013 02:32 PM
momdenise
 
Posts: 45
Member

Thank you for that. Natalie has had Iv steroids and trigger point injections in her neck and had no adverse reaction... Didn't help but didn't hurt. Well, the trigger point injection helped some. The lidocaine from the shot brought her pain way down (in the preverbral c4 muscle) but it came back up once it wore off. We are leaning toward cervicogenic headache.

05/30/2013 02:17 AM
Enbee
EnbeePosts: 1556
Senior Member

I'm glad you finally have a diagnosis!! Well done for continuing to pursue the Lyme angle, it seems to have paid off. While it's not a nice diagnosis at least now you can get the appropriate treatment and hopefully make some progress.

It is really interesting that your mother has also been diagnosed and she potentially picked it up before you were born. Hopefully you both start feeling better soon.


05/30/2013 06:29 PM
fourleaf
fourleafPosts: 64
Member

I've been seeing Lyme Disease pop up rather often, and it's making me think. Is getting tested for Lyme something that is worth looking into for NDPH sufferers? From my limited research, I don't think I have any of the other symptoms, maybe some fatigue but that can be attributed to anything. But should I have the test done even just to rule it out? In the small chance of being positive and getting possible relief from the pain, is it worth it just for the peace of mind? Or do you need to have other clear cut symptoms to even consider getting tested?

05/30/2013 09:28 PM
tortoisegirl
tortoisegirlPosts: 3237
Group Leader

I hope the Lyme treatment is helpful. I too have always wondered about Lyme & co-infections, but from what all I've read, my case doesn't seem to fit (onset, location, symptoms, characteristic responses, etc). However, I'd like to eventually get the test done, as until then, there is that possibility.

The cost of the Igenex test & LLMD visit is quite high, let alone the potential treatments (all three typically not covered by insurance). For me, if it seemed like a better fit, I'd put it as a higher priority. Often its tough to prioritize treatments and doctor visits. I guess that is better than being out of ideas though. Best wishes.

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved