Need some support tonight

I'm just really in need of some encouragement tonight I guess. I apologize in advance as this is a LONG post, but I need to vent to people who will understand.

I should start out by saying I haven't been diagnosed, don't even know if what I'm experiencing is Lyme, but from everything I've researched, it looks likely. In mid-July, had a random dizzy spell. It didn't last past that day, and a week later I woke up completely exhausted with no idea why. That afternoon, I was in a minor car accident - checked out, just a little whiplash. Obviously shaken up, and it triggered my anxiety a bit. We went on vacation at the end of the week. The second day, I suddenly felt very icky - like I needed to sit down or I would pass out or be sick. When we got back to the hotel room, it hit me again, and now I started shaking with horrible chills, but no fever. Symptoms went away by evening, but the rest of the week I continued to experience these off and on.

When we got home, this continued. By now I was having: unusual fatigue (not so bad that I couldn't get out of bed but I didn't have much energy), dizziness/off balance spells, loss of appetite (possibly from the constant anxiety), chills, grainy vision (I think this might be what they call visual static?) that got worse in the dark, brain fog, clogged ears, fluid like feeling in ears, some head pressure at times and also aches in my face - jaw/cheek/teeth. I should also point out that a few weeks prior to this, my gums seemed more inflamed than usual and I had a sore spot or two with them.

So I go to the doctor, she runs CBC, cholesterol, metabolic panel, and thyroid tests. Also CT scans of brain/sinuses. All tests come back clear. Am diagnosed with bladder infection (from urinalysis) and fluid in ears, given Cipro, Claritin and Flonase. Symptoms go away in two weeks, except for grainy vision and fatigue, which is about 85-90% better.

I feel okay and get back into normal routine for a while. Then two or three weeks ago I start feeling tired again. This weekend it gets more noticeable, and this week I develop trembling all over my body - feels like an internal vibration or shaky muscles. Hands visibly tremble sometimes. It has been bothersome enough that I haven't slept much in almost a week. I went back to the doc for more tests - ELISA, Epstein-Barr, CRP, ESR, HIV. I should get results this week. I called back the next day to say I haven't been able to sleep and it's triggered my anxiety - am told by the office that she doesn't prescribe controlled substances (I never asked for them) and that if it's that bad I should go to the ER. Oh, they also gave me the crisis hotline number...I was a bit insulted. So now my doc thinks I am a nutcase who wants pills.

Tomorrow I want to call and start trying to schedule with a LLMD. But my problem, and why I'm writing all this, is that I'm scared beyond belief right now. I'm scared that I may have had this for far longer than I think (I've had panic attacks and anxiety since 14, I'm now 28). I think of all the random symptoms I've had over the years with no explanation. I'm scared that it's too late and that I will progress too rapidly, as it will probably take a few months or so to get a LLMD. My only other option is to press my doc for the Igenex WB, but even if she agrees, I fear not being treated properly if it's positive.

My whole family thinks I am losing it. They think it's all my anxiety, that I am trying to avoid starting the new job I've been hired for (doesn't look like I'm going to be able to do it now, which is another big blow to me). I have tried to explain that in 14 years of panic attacks I've never had these symptoms before. I still live with my parents, and my mom and I have been constantly fighting over this. All I can do the last few days is cry and worry, and I know it needs to stop. I know I am not doing myself any good, especially when I don't even know for sure this is what I have. Either way all this stress and worry is bad, and if I could just sleep normally it would help a bit. I have to take a sleep aid just to manage a poor 3-4 hours of sleep...the internal trembling and night chills keep me from actually falling asleep. My ears feel a little clogged again.

I'm sorry this is so long, I really am. It's just that you guys have been through this and I just want some reassurance that it's going to be okay if I do have this...I feel so lost right now. Your stories here have given me so much hope that I can beat this if it is Lyme, but I see how long and difficult a road it can be. I am terrified of what's to come. I have no recollection of a tick bite, though if I think back I seem to remember some kind of thing on my thigh that had a red circular area around it - not the bullseye, just a red area. I don't know if that's anything or not, or how long ago it was. My mom and I fight non-stop over this; I have begged just to let me be seen by a LLMD. I feel like the laughing stock of my family right now, as I can't seem to get through to them. I feel like a burden on everyone and I'm tired of them rolling their eyes at me. It's like living in a nightmare. Then I worry about the costs of everything, should I be diagnosed. How do you guys cope with these feelings and worries, especially when you were still unsure of what was going on? How did you deal with family members who didn't take you seriously? How did you manage to stay positive? I have already started some of the detoxing stuff, and would love to try herbal stuff on my own, but I really don't want to do that without doctor supervision.

I hope you find the support you need. People really are supportive here and seem to care. Keep posting, we are here to help.

~Ducktapetherapy

Thank you all so much for the kind words. I have managed to get an appointment with a LLMD in Indy, unfortunately it's not until January! It scares me to have to wait so long, so I appreciate any advice on what I can do in the meantime. I have begun daily lemon water, have been starting epsom salt/peroxide baths slowly, and will start dry brushing as well. I am also going to work on cleaning up my diet as much as I can handle right now. I actually slept last night (!!!) and the trembling seems to be a bit better than it has been lately.

My uncle has some experience with herbs, and is friends with a natural foods/health store guy so I will ask him for help with this. I guess my mom mentioned this to him already and he seemed apprehensive about me doing so, and I have already said I am scared to try these things on my own. Buhner's is the protocol I have been looking at anyway, as it seems relatively cheaper and simpler than others. I guess I am just afraid of doing more harm than good...but I also don't want to do nothing, you know?

I know there are tons of at home protocols, are there any other natural supplements/vitamins I can be doing in the meantime that have helped symptoms? I will look into the Green Vibrance powder I saw mentioned too.

I feel a little better knowing I am going to see someone very good and very knowledgeable about this disease, and that I am going to get help no matter what it ends up being. It is just hard knowing I have to wait and worrying that I will get worse in the meantime - I suppose you all have dealt with this though! I am trying to keep a positive attitude and distract myself as best as possible but it's difficult when you're scared and already an anxious person by default. As for the support, my mom has said she'll totally support me if I do in fact have something, she just isn't convinced at all that it's Lyme - my family unfortunately still thinks it's rare and I'm just being ridiculous. They remind me of every other ailment I've thought I've had in the past - well maybe this will explain things!

I have some questions that have been playing around in my head, so I guess I should go ahead and ask them:

Does anyone ever go to a LLMD with Lyme symptoms and find out it's NOT Lyme? Since it's usually a clinical diagnosis, I guess I am scared of being misdiagnosed.

Is it possible to have one of the co-infections without Lyme? I assume it's rare.

January seems like a long time to wait, but it will go by quickly.

In the meantime, if you want to try Buhner's herbs, the people on this forum can help you. Also, continue to detox and develop some good habits...because you will need to effectively detox when you start treatment.

If you don't have Lyme disease, the Buhner's herbs won't harm you. They are much gentler on the body than antibiotics.
The only one that you may need to question is the astragalus. It shouldn't be used in chronic lyme cases. You were infected in July of this year, correct? That's not very long ago. To be safe, you could do the other herbs and not include the astragalus until you get clarification on whether you're considered chronic lyme. Hopefully someone more knowledgeable will chime in on this point. I think there is grey area as to when it becomes chronic...but I think generally the belief is at one year.
So, what you could start with is japanese knotwood, Cat's Claw, and Eleutheros. Buhner lists the sources that he recommends...and also the dosage. Remember: start one herb at a time...and start at low dose...and slowly ramp up before adding the second one.

Re: does anyone go to a LLMD and not have lyme? I don't know. I think, though, that by the time a lot of us go to a LLMD, we have been to so many doctors to try and figure out what's wrong with us, and have been either undiagnosed or misdiagnosed...plus, the multitude of symptoms affecting so many body systems...doesn't lend itself to very many ailments.
When you start antibiotic treatment...if you have Lyme disease, you will usually have a response...either you will feel somewhat better, or you will feel worse (herx).

Regarding having co-infections only - I don't know if that can happen...again, hopefully someone else...maybe Traveler will respond to that question.

You could in the meantime have some tests done to check your vitamin B12 levels, and your Vitamin D levels to see if you need supplementation.

hi buzzbomb, I so feel your fear and pain. I was told by 3 llmd I have lyme disease. this was in 2013. my current lyme doctor said I have probably had it for 20 years. that is when my health started to deteriorate. first told it was fibromyalgia, depression, crazy, all of those things we all go thru. I was having weird symptoms. anxiety which i have had a long time, anger rages, sharp shooting headaches back of my head, frontal headaches, burning bottom of my feet, burning on my skin chest wall and back I have a lesion in my spine muscle aches and pain, brain fog, short term memory loss.

my treatment started in october 2013 first started on azithromycin others was added and I did buhner protocol too. I started to see improvement but herxxed real bad then other antibiotics were added I herxxed so bad I could not tolerate it. this went on for eight months. I felt suicidal at times, hopeless, and this site has been so supportive. by april of 2014 I got desperate and went to see an alternative doctor who began me on IV peroxide that is when I started to dramatically improve. I had been in bed 2 yrs.

I encourage to research everything you can, dr schaller, dr horowitz, dr burrasscano, google and you will find many informational websites and many will help you find a LLMD. also research all treatments and the cowden protocol, buhner protocol, zhang protocol. and all alternative treatments such as colloidal silver, hyperbaric oxygen, IV peroxide, Rife machines, and many more.

coping, well I was so scared like you at first. went to I don't know how many doctors one cancer doctor. I had 2 friends I could talk too and I talked on here lots. I would try to stay positive by watching funny movies reading if I felt like it, sit out in the sunshine, listen to soothing music, pray to god all the time, but I kept having hope. hope is what kept me alive. without hope, we die.

the detox helped epsom salt bath, lemon juice, trying to eat right, avoiding stress, taking magnesium helps a lot, I had to get on xanax and paxil to cope. taking lots of vitamins, they say alka seltzer gold helps a lot and I am going to get some.

I have got better to the point where I shop for my groceries, live alone in a new home separated from my husband, I am on disability, but also receive money from my husband pending divorce, I can now ride my horse which I prayed for, I thought I would never ride again, it is my passion. I have a md order to get therapy 2x a week so I hope to gain my strength. but some days are just so hard, I stay at home and rest a lot.

the symptoms I still have is severe burning on my chest, headaches now as bad, and intermittent tingling on the bottom of my feet.

you will get thru this. I thought I would not make it but you will take deep breaths, go slow, and take one day at a time. but learning all I could really helped me to get this far. but in my case I am on azithromycin and iv peroxide once a week and that has helped me the most so far. I want hyperbaric oxygen therapy but I cannot afford it right now.

I am new to the forum as well and all I can tell you I know exactly how you feel. Especially at night! Please know you are not alone in this. <3

Wow, thanks so much for all the love guys. It already makes me feel better to read all these posts. Today was better for most of the day but tonight I've been a little icky again. So I took a detox bath and am watching a funny movie to deal. But I have to keep in mind that I lost a lot of sleep in the last week so that's one reason I know.

Thanks for the responses to my questions. I will talk to my uncle about the herbs and possibly start those. He himself has dealt with chronic fatigue for a good chunk of his life and we had a little talk the other night about diet/lifestyle changes. Another good thing is one of my favorite relatives is in town for a few weeks and I think that will be good for my mood. I have a question about the lemon water- should I be drinking this throughout the day? So far I've started out with a glass in the morning.

Also Traveler - I have wondered about my adrenals for awhile actually. Usually when I have the fatigue, I notice I seem to feel more energetic in the evening much of the time. It would be nice if that was all this turned out to be but that is probably wishful thinking on my part!

Anyway, I'm sure I will have more questions but that's good for tonight. I see there's an anxiety board on here too so I will probably browse around there for suggestions as well. You'd think after 14 years of anxiety and panic attacks I would have this down by now LOL.

Take care guys and thanks for being so helpful and inviting here! You have no idea how much I appreciate it.

With all of your symptoms, I would say that you likely have Lyme, but you may have low functioning adrenals that need to be supported as well.

And I agree with Girlie - drink the lemon water all day long. A good goal is 64 ounces a day. I have a very large cup that I use and if I get 2 of them down me each day, I have accomplished my 64 ounce goal!! It's much easier to keep track that way!

Oops! I gotta get started on it now, or I'll never catch up!! LOL! A lazy day today!