Lyme newbie

Hello all. I'm new to the forum and thought I would introduce myself. I have my first appointment with a LLMD in 2 weeks. Not technically diagnosed yet but just KNOW that lyme has got to be the culprit of all that is ailing me. The fatigue has been relentless for more than 10 years but I started having nervous system involvement almost a year ago. After having my gallbladder out in January and then going through an intensely stressful situation at work my symptoms got so much worse. This is obviously a disease for very rich people, which I am not, so I really don't have much hope of getting better and staying better longterm. Guess I'm in need of a support group of sorts. This is a very lonely illness. Abandoned by family members, bosses, coworkers and doctors who keep telling me it's all psychosomatic--go see a psychiatrist. People really have no clue! Its so frustrating! Nonetheless im trying to stay hopeful of the future. Its just hard being so sick and being the breadwinner of the family. My hubby lost his job which just intensifies the stress of what im already going through. Yada yada. Anyways sorry for being so whiny. I'm sure some of you can relate to some of the things I'm dealing with.Godspeed

hello Lovedeeply. So glad you found this forum but sorry that you had to. You are right, it is a lonely illness but here everyone understands. And you'll get lots of great help from some really knowledgeable folks.

I hope your hubby is supportive, too.

Welcome to our community, Lovedeeply! I am sorry you have been suffering with this ...and no support...BUT, I am so glad you found us. This is a wonderful, caring, knowledgeable group of people here.
We understand what you're going through.

That's great that you have a LLMD coming up. That's a good start.

I have a lot of nervous system issues, too. Do you suffer a lot of pain?

PeteZa mentioned detoxing. You should consider starting right away. It will only help you...when the bacteria dies off - either from normal life cycle...or from treatment, the toxins that are released cause an increase in symptoms...and sometimes even new symptoms arise. The best way to alleviate this is to do effective detoxing.

Here is a link to a thread of detox ideas:

www.tiredoflyme.com/detox-methods.html

You could start with a couple methods...and every few days add in another one.

Take a deep breath...it's a little overwhelming at first...but just keep coming back here to read, post...ask any questions you have....
We're here for you.

Thank you all for responding! It feels so nice just to be able to talk about it openly without being shunned, blamed or accused!

My main symptoms are neurological in nature. Started with the fatigue. I started having weird neurological blackouts last summer and i get numbness and tingling in the right side of my face. Sometimes the fatigue is so bad I can barely walk and slur my words like I'm intoxicated. My mind is just gone some days. I get this weird pressure in my head and when it comes I'm just totally incapacitated until it passes and I get lost and confused when it happens. after my surgery in January and the stressful ordeal at work i began having cold sweats and fever. Sometimes i have tremors like i have Parkinson's disease. The worst was a few weeks ago. I had a horrible panic attack that lasted 2 hours in the middle of the night. I thought I was going to have a heart attack. It was the next day that I contacted the llmd and was told some things to do for detoxing so I started the epsom baths, green tea, lemon water, cats claw and turmeric. Amazingly I've not had the fever since and much less neurological problems. My symptoms have turned more now to my joints and intestines. those symptoms are uncomfortable but sooooo much more manageable than the weird neurological stuff. What an unpredictable disease! You never know what you will get from litterally one day/minute to the next.

My hubby is VERY wonderful and supportive. He sees firsthand what I go through. I also have a daughter. She's 10. I don't know where I would be without them.

When I was telling the lyme doc's office lady an overview of my history and all I have been through she said it is just all very typical of lyme. I began suspecting lyme back in October but shrugged it off thinking that could never happen to me. Lol. Then my ex sister in law was diagnosed with it and so that's when i realized it could absolutely happen to me!

The llmd I'm seeing on the 29th is the only llmd in the state of Texas. He is expensive. He lost his license years ago for treating lyme as a chronic illness so insurance won't cover but he is very knowledgeable. He was a gynecologist but became passionate about lyme after his family was affected by it. He attends all the ilads conferences. There are some cheaper llmds in Oklahoma that I will probably turn to once he jumpstarts my treatment.

Well thank you all for caring. One hard thing is that I'm working 10 hour days. Getting to work at 7 am and staying productive until 5:30 is next to impossible and my uncaring supervisor will not adjust my schedule to a 5 day workweek to accommodate me. :-( need to try and get some sleep for the next hour. Again..thank you all.

Hi, welcome, I have also recently joined this community. I can understand how you feel. You have wonderful family, that is very important

So...I have read through the detox forum and also read stuff on diet. Wow! You really have to be pretty hardcore about lifestyle changes. It will be a challenge but it's one I'm ready for. Being sick all the time is way more of a struggle.

So a couple of questions.....has anybody had horrible neurological /mind/memory problems and made a decent recovery? Will my attention span return eventually? I feel so slow and stupid all the time. Carrying on a conversation is a chore! And another question. .I'm sure not all llmds treat the same way but if mine puts me on IV rocephin will i administer at home? Do I have to keep making trips back and forth to his office and miss a lot of work? I know not everyone is the same. ..just wondering in general. .

Thank you guys so much for the info!

That's awesome to hear that you have seen so much improvement in your symptoms. I do hate to hear that you still experience the heightened fight or flight response issues. For me, that is one of my main symptoms. I take propranolol and low dose Xanax to deal with those and also have to take restoril to get any sleep because of it.

Yes, girlie! Propranolol can really help. I started taking it in 2009 for performance anxiety and as you know it works by counteracting fight or flight response. It doesn't help so much with mental anxiety as it does with the more physical aspects of shakiness, tremors, breathlessness, etc. You just feel more in control. I just started the Xanax last year. I take 0.25 mg and break them in half, so it's a very low therapeutic dose, but the low dose Xanax with the propranolol is a very good combination for me. The propranolol works on the physical symptoms while the xanax works on the mental panic. The propranolol does tire me out as does the Xanax so I TRY not to take it unless I just have to...which I do since my job requires public speaking. And more recently i have to take it at home since my anxiety is so bad...There's no way I could hang without these meds. I hope it works for you. In my experience it doesn't break the fight or flight response altogether as my symptoms return when the drugs leave my system. But hopefully that will change when I get into treatment. I'm just counting the days til my appointment. I keep having brain herxes and I swear every time it happens I get stupider with more brain damage. Working is becoming impossible and I wonder how much longer I will last before they fire me or I just make a total fool of myself. My attention and memory are just nonexistent. It's so hard trying to appear normal to everybody else when I feel like I have Alzheimer's at 32. sorry for the lyme rant. I could go on and on. It's just so much to take in and come to terms with. Im always thinking "how did this happen to me!"

My shivers - although worse when it's cold - are often triggered by something stimulating me emotionally. For instance, certain songs i hear...I will get the shivers up my spine....or sometimes I'm just sitting, listening to somebody talk and I get the shivers. Often I am not even cold.

So, they seem to be related to my nervous system...almost like adrenaline rushes....really hard to explain.

What dose of propranolol are you on?

Girlie..I think I have had those kinds of shivers before but I don't get them frequently. I started out with 10 mg propranolol. Now I am prescribed 20 mg but I will often break them in half. For public speaking I always take the full 20 mg but for regular cms control 10 mg usually works for me.
It IS hard to explain our symptoms to others, for sure.

Bluelyme...I am not even officially diagnosed. I've been to several MDs, urologists, neurologists, rheumatologist. The rheumatologist is the only one that agrees I needed help but she couldn't help me. My regular doctor turned on me when he told me I was in need of a psychiatrist and that I was imagining things. I did mention lyme to a different doctor around October 2015.. She told me chronic lyme didn't exist. She told me if I got lyme years ago then I would have recoveref and there are no lasting effects. as for treating early, that's out of the question. I have had it at least 10 years. I didn't notice the fatigue until I was pregnant with my daughter, she is 10. I first got bit by a tick when I was in the 3rd grade. so I wonder if I had it my whole life and the pregnancy just brought it out of hiding or something. Anyway scored 111 on the Horowitz questionnaire. Seeing my first llmd on 3/29. Next Tuesday. I am excited to get some validation for what's wrong. But I'm sure I have a long road ahead.

My appointment with the llmd went well today. He doesn't bother with the blood test. He says even the igenix test is not 100 percent. So it's a purely clinical diagnosis of lyme, bartonella and possibly babesia. He considers your medical hx and physical exam. My exam revealed nerve damage and a jacked up brain. I start supplements, gabapentin and some other med for a month then start antibiotics. He is making me see a cardiologist since I have POTS and a neurologist to have an EEG done but both specialists are also lyme literate )) he said most of his patients are well within 6 to 18 months.

Girlie...maybe the correct term for "nerve damage" is sensory loss. He put a vibrating thing on my foot and I had to tell him when I stopped feeling it. I stopped feeling it before it stopped vibrating..hence sensory loss/nerve

I wouldn't be nervous about the propranolol...People take it all the time for performance anxiety. It doesn't drug you up it just eases the nerves and stops fight or flight so it's a great tool for us I just have severe fatigue so I don't take it unless I HAVE to. If you are prescribed 20 mg you might break it in half and see how it affects you. I'm all about taking the lowest therapeutic amount of any med personally. That's just how I roll. I would personally take it when you need it..pretty sure it's ok to take it daily..

You definitely have lyme. All the symptoms and experiences you mentioned I've experienced as well (minus the fatigue, I some how dodged this symptom).

Even the waking up in the middle of night with an anxiety attack and full body trembling sounds far too familiar.

The advice I will give is, you know its lyme, don't let anyone else (even doctors) tell you other wise. Your lyme test most likely will come up negative, but it doesn't matter, remember that. It sounds like your LLMD is on board though, so you shouldn't have any problems moving forward.

Once treatment starts it does get a lot better. It may be a long road to a full recovery, however that first push of abx, herbs (if you add that to the mix), supplements (because your body most like has several vitamin and mineral deficiencies at this point), you can feel much better relatively quickly (though not completely better right away of course).

Your LLMD hopefully has a good game plan for you.