Two Medications I found helpful for my Symptoms before getting my Diagnosis.. Worth a Look !

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Regular Member

Date Joined Jul 2007
Total Posts : 29
   Posted 12/5/2008 2:21 AM (GMT -6)   
Ok, so now I'm all happy I have a diagnosis. Believe me, I wish it were something else. I'm not looking forward to being treated over the next year with IV infusions three times / day, a Port in my chest, etc.

With that said, I am happy that I can start getting well.

I just wanted to share a few medications I found helpful for me up until now. Please remember to check with your Dr. before you start any sort of medication treatment regimen. Although I feel like I know more or as much as most General Practitioners, and now Psychiatrists, and Possibly Oncologists, I still don't have prescription privileges. I was half way through my Nurse Practitioner program when my son was born and didn't quite get there.

I will tell you this, if you research something long enough, you can be an expert in the subject. How do you think inmates become lawyers behind bars ??

Ok, so now I'm done boasting myself, which I'm not really trying to do. I just want to let you all know that now that I'm here, I am going to learn everything there is to learn about Lyme Disease and I hope I will be able to help many of you get well as I come along in my own journey. Like many of you, I have been let down by the Healthcare system with this horrific disease. I know some of you have gone longer than I without a diagnosis, but I think it's pretty sad that people have to suffer so long before getting a diagnosis such as Lyme Disease if your even so lucky to ever get it.

Once I start to get a little better, you will see me out in the media with this stuff. I will be a household name and you can mark my words. I will be the Florence Nightengale (Of course in a male role :-) ) for both Mental Health care awareness and any disorder that encompasses a diagnosis from subjective findings only.

Ok, now to the subject of this post. I have found that a light Narcotic such as Ultram (Tramadol) to be very effective in alleviating many of the aches and pains associated with Lyme Disease. The drug also seemed to help with my headaches, stiff neck, etc. Ultram is a schedule IV drug in the U.S. It is not considered a true narcotic, however it has "narcotic like" properties to it and it works via the mu receptor binding at the opiate site in the brain. With that said, it does have the potential for tolerance, addiction, and abuse. For me, I stumbled onto this med by accident, as I took it for a real injury and found it helped with many of my other symptoms. It's not surprising to understand this now as this medicine is frequently prescribed for those who suffer with Fibromyalgia. It has the lowest abuse, addiction, and tolerance potential of all opiate type drugs.

Ok, now the medicine that helped the crazy shortness of breath, hyperventilation, whatever you want to call it. I have had this daily for the last 6 months or so. This was probably the worst symptom I had with the Disease because it took the most out of me. I'm probably one of the most Stoic people you will ever meet and when I tell you I'd rather have a knife stuck in my arm than have that hyperventilation going on for hours on end, every day, I kid you not. I tried high dose Benzos such as Ativan and Xanax, but neither would break it. I would end up sedated, but still hyperventilating with my heart racing at 120 bpm. Amazingly, I managed to gain 20 pounds over just 3 months. Looking back, and even now, this Disease has somehow increased my food cravings for carbs. Anyway, I don't know the exact mechanism of action, but I found that taking a swig of childrens liquid Benadryl would quickly break the Hyperventilation and last for about 3-4 hours before I would have to take another dose. I didn't take it around the clock as not every attack lasted the 3-4 hours. Usually, any kind of significant exertion would bring on the longer attacks which for me would be running up a flight of stairs. BTW, the hyperventilation would also resolve for me with the use of the Ultram as well. All I can tell you is that Benadryl is an Antihistimine, Anti means against, so were talking about "Against Histamine". Hitamine is released from the body during allergic reactions for the most part. Because there was no "Allergy" taking place to cause these attacks, at least, none that I was aware of, I'm not quite sure why this drug would break it when other sedative type drugs wouldn't. This one is a mystery for me.

Regular Member

Date Joined Apr 2008
Total Posts : 50
   Posted 12/5/2008 2:50 PM (GMT -6)   
I dont know if this is a fact but i have heard of taking benadryl before for lyme symptoms because our bodies may feel like or are infact having an allergic reaction to the toxins being realeased as well as lyme can cause chemical sensitivites which can cause allergic like reactions. I have nuero lyme and i told my llmd when i first met her i had to take benadryl to sleep and avoid works better than the ativan or the xanax she gives me as well. I also have labored breathing and chest pains which are horrible for a 28 year old  previously healthy women. I also gained 20 pounds in a year... I am typically very fit and thin. I always joke..i thought you lost weight when you have a disease..why am i so One thing to watch out for with Tramadol or Ultram is if you are a Nuero lyme patient it does decrease the threshold for seizures and it made my CNS too sensitive..tingling all over..but for other people it has helped alot..i worked for me at first but then my doctor decided it was too risky with the nuerological symtoms..but i do miss having the little bit of relief it offered at first.
I would love to talk to you more and please share with me any information you gather i have now been suffering symptoms for almost a year and have only been going through treatment for 7 1/2 months i was very lucky to get a positive ELISA and Western Blot the first time i asked for it a local hospital after being told i had probable MS and waiting for three months for a nuerology appointment i researched my symptoms and found lyme and do have a scar from a bite behind my ear when i was 8 in Virgina and am an avid camper and hiker here in Oregon..I insisted on the test and I was right. Never stop fighting!
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