I'm a Former US Army Special Forces Operator and Lyme Disease is REALLY Kicking My Rear!

Hello Everyone!
For over 20 years I’ve been experiencing muscle pain, fatigue, mental fog and arthritic pain especially in my knees, hips and shoulders and loss of any feeling in my fingers and toes. I’ve seen literally dozens of doctors that attributed these issues to traumatic injuries occurred during my military service.

In July of this year, I started to experience extreme weakness in both legs. In August I woke up one morning to find my right leg paralyzed, no feeling at all on my skin, but a burning pain on the inside of my thigh and couldn’t feel my testicles. I spent a week in the hospital, had a Spinal Tap and was diagnosed with Diabetic Amyotrophy, given pain killers and released.

Two weeks later my General Practitioner called me and said I need to start with Doxycycline for two weeks because I was positive for Lyme Disease. I took the Doxycycline for two weeks and still had extreme neck and shoulder pain, still couldn’t feel my fingers or toes and still had extreme pain in my right leg, couldn’t sleep and still had mental fog.

I was re-admitted to the hospital and was immediately put on IV anti-biotics. The next morning the lead doctor took me off of the IVs and said I needed to have another spinal tap. I took the second spinal tap and was put back on the IV anti-biotics.

The next morning, the lead doctor took me off of the IVs again, told me I was crazy and discharged me from the hospital, none the better.

My GP sent me to Regensburg University Hospital who conducted neurological tests on me. The tests involved inserting needles in my thigh and shocking me with electricity. They also did blood work. The University doctor called me that evening and said tests indicated that borreliosis was still active in my body and put me back on a three week Doxycycline regimen. They also put me on steroids and medicine for extreme depression.

After all this, no relief! I found a Lyme Specialist who really seems to be Lyme Literate. He took me off the steroids and put me on a six week regimen of Roxithromycin, Infecto-Trimate and Pantoprazol. He said that I’ve had Lyme Disease for years, maybe decades and the borreliosis had attacked my root nerves and could have caused my arthritis symptoms.

He is very concerned about my condition and said that if this six week treatment doesn’t work, I’ll have to be admitted to the hospital again and have 28 days of IV therapy. He’s also leveled with me and said it might take months or years to get relief from this disease or it might not ever go away.

The last time I was bitten by ticks that I know of was during an Army training exercise in 1993. This is documented in my military records. I was treated for weakness and confusion in 2008. This is also documented.

Is it possible to have had this disease for 27 years and not know it? I haven’t been able to work since August and while some of the pain has subsided, it still exists. I still cannot walk without a cane, I can’t sleep, can’t feel my fingers or toes and one more thing: When I wake up, I have debilitating pain in my hands and feet. I can’t get out of bed without my wife’s help and need her help to get dressed.

This is really hitting me HARD because I’ve been an “action” guy my whole life. Sometimes I just start crying for no apparent reason. I just can’t explain it!

Thanks for reading my story and if you can offer support, I’ll gladly take it!

Thanks and God Bless!

Craig

Hi Craig,
I had undiagnosed Lyme and Co -infections for years, probably got it approx 1990. Been treated the last 10-12 years. Have experienced all of your symptoms. I see a Lyme literate doctor/ integrative MD who has helped tremendously. It’s a multi system disease. Happy to support you in any way I can. I am also a holistic nurse. Please be cautious with so many antibiotics since keeping a healthy gut is extremely important. The physical symptoms I found were way easier to deal with than the psych/neuro/ emotional ones! Maybe far worse than your Special Forces stuff!!

Hi Emotions!
Thank you for your advise and support. This has been very hard on me and even harder for my wife. The anti-biotics have caused secondary fungal infections that my doctor is treating with cremes. They hurt pretty bad also.

My real fear is that I’ll be forced into retirement because of the loss of mobility and mental fog that I’m experiencing. I’m on short-term disability that only pays 40% of my base salary. My insurance company is talking about putting me on long-term disability. If that’s the case, I won’t be able to continue working for my company.

The stress of this, I think, is exacerbating my physical and mental issues. I’m also a professional SCUBA Instructor and haven’t been able to dive since August. 50 meters underwater is my “Happy Place” and not being able to do what is my passion is really tearing me up!

Hi Craig,
I am in the same boat as you and I can tell you, for a fact, you are not crazy! It is possible to have this infections for 27 years, that is about how long I have had it. I can’t tell you how many doctors have told me that I just needed mental health help. Trust in yourself! Make yourself heard!
I was finally diagnosed 3 years ago by a Lyme literate doctor and he put me on the same regiment that you are on now. I managed that regiment for a year and then I just had to call it quits as all the drugs were making me sick (stomach, weight loss). He then put me on an herbal protocol, Byron White. I have been on that for two years and it really made a difference. But, this past summer, I was bit again, and boy was I sick! I saw the doctor within two weeks and he put me back on the antibiotics.
I really believe that the antibiotics help check the bacteria, but does not kill it. (I’m not sure anything kills it). The herbals made a huge difference and seemed to clear up the residual pain and confusion. I still cannot tolerate any loud sounds or vibrations or bright lights. I have physical therapy for my legs and shoulders and neck. My PT understands that the bacteria hit me in different spots and that’s what we work on. I can now move my shoulders, working on knees now.
Please keep fighting, tell your story.
You can do this, you sound like a really tough guy. I did it and I am a 95 pound grandmother! Have faith in yourself and your Lyme doctor.
You are in my prayers, fight the good fight!
Tess

Hi Terischnit,
Thank you for taking time out of your day to give me support. It really means a lot to me! I’ve coming to the conclusion that the anti-biotics aren’t working either. The pain in my hands, feet, shoulder neck and back have returned with a vengeance. It’s really difficult for me to walk or to sometimes stand up. It really hurts! I’ll ask my doctor about Byron White and see what he says.

Thanks once again for your help! It means the world to me!

Craig

I am always here for a fellow Lymie. My advise is to finish the antibiotic course and then go to the herbals. I switch back and forth, antibiotics with a bite and then the herbals after. Once the antibiotics, anti-parasite and all those lovely pharmaceuticals have killed the majority (?) then the herbals tend to take care of the lingering ones. Just my opinion. I live in a highly infested area and I don’t go outside until there is a heavy frost. And I have gotten bit in January when the temps go above 40 degrees. People think the frost kills them, but they are always there, just waiting til it warms up. I have had to give up my passion of teaching wilderness skills because of those little bastards.I’ve racked up over 30 bites in the last three years and I am still kicking. So can you. Stay strong!
Tess

I’m going back to a different hospital as an in-patient for an estimated 5 day stay. Thanks for your help and I’ll let you know what happened when I get back from the hospital!

Good luck and stay strong! Looking forward to hearing all about it.
Tess

Craig, how are things going for you?

Seenie from ModSupport

Hey Craig, we’re still wondering how things went for you after your latest round of treatment.

I hope this message finds you well, or at least improving. Take care, and drop a line!

Seenie

Hi Seenie and All!

I was forced to leave my job and moved to our home in Croatia. I am on Long Term Disability and while the feeling has returned to my right hand, I’m still very weak, suffering from constant fatigue, my balance is so bad I almost didn’t qualify for a Croatian Drivers License.

I still can’t feel my toes and it feels like fire burning whenever I put any pressure on my right knee. My short and long-term memory is very, very bad.

I’m seeing a neuro-surgeon here who has put me on an anti-depressant (Duloxitin) for the constant pain, but a side effect of that medication makes me want to sleep all day.

The good thing is I can walk better now but only for short distances.

The doctors here have no clue about this disease. Example: I’ve seen two infectologists who’ve told me that I never had Lyme Disease even when presented with the serology reports from German hospitals that stated that my anti-body count was +126. They told me that I need to see a psychiatrist because it must all be in my head. I’m seeing one next week even though I know nothing is wrong with my state of mind. (But that’s what all crazy people say.)

I’m currently seeing five doctors and they all have different opinions. What am I supposed to do?

Sorry to have been away for so long!

Craig

Craig! Yes, it took a while, but we reconnected eventually, that’s the good thing. Sometimes (like now) that’s a miracle because Ben’s Friends has over 40 communities, and I am (mostly) in the back office. My colleagues Sharon and Merl are the ones on “the beat” who have a look into each of our 40-or-so communities every day, and if they come across a message or a discussion for me, they let me know. So a shout out to our friend Merl for noticing your message and passing it on. We don’t call Merl and Sharon “Ben’s Best Buddies” for nothing!

Well, you really are in a bit of a pickle there, aren’t you? Familiarity with Lyme beyond the academic isn’t going to be easy to find outside the NE US, although Lyme isn’t unknown in your part of the world.

It sounds like your docs are doing their best, but it sure would be nice to get a few more answers or at least a couple of clues. We have someone in our circle here who is somewhat of a Lyme expert, I’ll ask him to have a look at your post. Maybe he will have some ideas for you.

I think you should also reach out to the community membership. The best way to do this is isn’t on a “New member Check In” thread. To make a new post, click on the butterfly (upper left) then on the big blue plus (lower right) and make a new post. Choose “General” for category. A post placed there will get more attention.

Hey, wait a minute! I have a tool in the bottom of my desk in the back office that will allow me to recategorize this thread. I’ll just dust it off and do that, and then let’s see where it goes from there.

Seenie

Thanks Seenie!

I want to give everyone an update. I started seeing a neurologist and a doctor of physical therapy here in Croatia. My neurologist put me on a daily regimen of Dulocetin, an anti-depression medication. I told him that I wasn’t depressed and didn’t want to take it. He then explained that while Dulocetin is an anti-depressant, it also blocks pain impulses. I tried it and it eliminated some of the pain in my joints. I’ve been taking it for 1.5 years now, but if I miss taking it, after a few days the pain returns.

The physical therapist has been working with me on my back pain and balance issues. He has been stretching my spine and it works for a few months and then the pain returns. My balance is still quite a mess.

I’m a professional SCUBA instructor and both doctors recommended that I dive as much as possible in order to relieve the pain (there’s no gravity under water) and to regain my muscle strength (I’m only about 40% of where I was before I contracted Lyme Disease). Neither doctor want me to lift weights or go on painful walks.

I just acquired my SSDI long-term insurance. Does anyone think SSA would take away my benefits if I do what the doctors want me to do?

Also I’ve been eating very healthy and have lost almost 70 pounds in 2 years. It has really helped my physical and mental status!

Craig

Sharon here. It sounds like you’ve made some really good changes and really good progress. In terms of the social security disability question, not really sure. The fact that you’re living outside of the US may make it less of an issue but I’m not sure there’s really a good answer to that.

In the meantime, keep doing what you’re doing

Sharon from ModSuppport