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Lyme Disease
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Posted 10/14/2013 9:43 PM (GMT -7)
So a little background info. I'm in Texas, I'm the second confirmed case of Lyme disease in my county and I'm not in a small town. It all got really bad about 2.5 years ago when I was driving and all of a sudden I felt like I was going to pass out. Everything went numb and I felt like I couldn't breath, much like a panic attack but without a trigger.

Neurologist '11- tilt table for POTS syndrome/dysautonomia-POSITIVE
Cardio EP (POTS specialist) '11- diagnosed with POTS due to chronic hypovolemia, Ehlers-Danlos Syndrome and vertebrobasilar artery syndrome, Lyme antibody test showed positive for antibodies.
Infectious Disease Doc '13- says I can't have Lyme cause I live in Texas, I can't have Lyme cause my body would naturally fight it off with good diet, exercise and sleep, says he will run the western blot through mayo clinic for my "piece of mind" but it's going to come back negative.

Then it comes back CDC positive for both IGg and iGm. Says I still don't have Lyme because its impossible to test positive for both. Says he'll do a spinal tap but the treatment of three weeks doxy would stay the same.

I'm 24 year old. I was a borderline genius with an impeccable photographic memory. I was productive. I was happy. I have a 3 year old. I can't do anything anymore. I can't function. I can't think. Im
Hopeless. I couldn't finish my last semester or college. I should have my masters by now.

Found a LLMD, only one in Texas.
My body is weak.
Started Mepron 1tsp 2x daily
Zithro 250mg 2x daily
about to add in the Plaquenil

Being treated for Babs before Lyme.

I feel like I'm dying. I guess I'm herxing. Who really knows anymore. I don't know what to believe. I find myself questioning reality. The Mepron is making me depressed, they offered and alternative but said it was less effective. I don't want less effective.

I also get weekly IV infusion of saline solution for the POTS.

I don't remember what it's like to be healthy. My life is ruined and I don't know how to go back. Emotionally and financially drained. Marriage falling apart. No support from anywhere. Don't know how to take care of my son, I can't give him everything he needs and I feel guilty.

I don't want to feel like I'm dying all the time, I don't want to feel like I need to go to the er all the time. Sometimes I wish I had cancer so at least people would understand. My friends think I'm a hypochondriac. The doctors told me for so long it was just anxiety and depression and all my symptoms were a result of that. I knew they were wrong, but I'm sick of fighting the world. I had to fight for this diagnosis but only to end up having the hardest infectious disease to diagnose and treat due to the IDSA.

What do I do from here. IM TERRIFIED. Im scared. I don't want to die.

Steph
Posted 10/14/2013 10:13 PM (GMT -7)
Hi Steph,
I think this forum is just what you need right now, some reassurance. I cannot comment on your medications as I have no knowledge about them, or experience.
I understand about the "dying" part. Lots of folks here can relate to the feeling. I'm just beginning "my fight" to get my life back, too.
I often remember myself well and strong as encouragement to get better. We people who suffer from this illness fight a couple of different fights. We fight the disease, we fight trying to convince family and friends just how sick we are, and, we fight ourselves. Try not to be too hard on yourself. I know it might be difficult now because you were so successful and self reliant in the past. I can relate to that too.
You WILL conquer this, if not for yourself, then for your beautiful little child.
Come back here often, we UNDERSTAND you...Good Luck
Posted 10/15/2013 5:11 AM (GMT -7)
Please hang in there, I was in accounting for 15 years, a student with a 4.0 grade point average, then I couldn't spell my name. I understand how you are feeling, we have all felt the way you do. Just try to take one day at a time, or one hour , do what you can.

For the little one, ask for help, you are going to be limited as what you will be able to do while you are going through treatment, rest as much as possible, and detox your body.

Most people with Lyme don't die, we just have to get our symptoms under control, I talked to people that have had it for over 20 years.

This website is what you need, it will help you. Reach out to other Lyme people on Facebook also, we have whole groups on there from every state, they will understand why you are going through.

best wishes,
justme
Posted 10/15/2013 5:48 AM (GMT -7)
My prayers will be sent to you, that's the only thing that has gotten me through my darkest hours this year, before I knew what was wrong . The people here are awesome & will offer great information for you. I'm new so to this & still trying to get answers. Hang in there!
Posted 10/15/2013 6:24 AM (GMT -7)
Has anyone seen some real improvement? Did you find it from a long term course of antibiotics or herbal treatments?
Posted 10/15/2013 6:34 AM (GMT -7)
We saw huge improvement with our daughter.

Before treatment she was a mess. Pain/fatigue symptoms, Tourette's-like motor/vocal ticcing, non-existant executive function, raging, insomnia. After 2 years of multiple abx treatment she was weaned from abx in April. We continue with herbals protocols. She is doing wonderfully. B+, A student. Happy, helpful, organized, very little pain, great stamina.
Posted 10/15/2013 9:39 AM (GMT -7)
Hi Steph,

I had the same story as yours (except the genius part, I'm closer to "bright chimp") and I have done very well with same treatment as you. But my doctor did add artemesia into the mix and I think it really helped, especially with the breathing.

After 6 months, I really am a solid 80% better. My symptoms are more of an annoyance now.

I hope you have the same results.

Remember to detox!
Posted 10/15/2013 10:19 AM (GMT -7)
Hi hun,

I'm with Joe - I got sick about a year ago and am doing well. I realized after treatment that I have had this for years and know - that it will take a long time to heal. I have not been on antibiotics for 7 weeks now. I still have some symptoms - insomnia, my veins hurt, no appetite but agree with Joe that it is more of an annoyance then anything else.

I go to work. I go about my day as normal. I go exercise (though not enough) and I even went to a concert recently. Hang in there! It gets better.

~beth
Posted 10/15/2013 12:23 PM (GMT -7)
When everyone is referring to detoxing and remember to detox what are they taking about? I've been self diagnosed gluten intolerant for 2 years, so in wheat free. I'm pretty much dairy free cause I'm lactose intolerant. I take vitamins...how else do you detox? I don't do any drugs or drink although I haven't been able to quit smoking cigarettes and my dr has recommended MJ use for the nausea.
Posted 10/15/2013 1:12 PM (GMT -7)
A lot of symptoms from Lyme and company are from the toxins created when the bacteria die off inside you. When you start treatment, you're killing off a lot more bacteria all at once, so your symptoms are that much worse (herxing).

Detoxing helps with that. Supplements like Cats Claw, Pinella drops, and others, help. One of my favorites, and cheapest, is drinking water with lemon in it. Baths, skin brushing, etc... all help.
Posted 10/16/2013 8:51 PM (GMT -7)
Read the "New to Lyme" at the top of the page for great detox tips. This is a great support site and many people here have gotten better using either antibiotics and or herbals. Diet and supplements will play a role in all this as well. Cut out the simple carbs if you can. You're not alone and as Opugirl said it does get better.

Best wishes.
Posted 10/18/2013 10:35 PM (GMT -7)
I am so sorry stephanie. I too have been recently confirmed as having lyme disease. It was very difficult for me to get my diagnosis. 3 mds told me I was negative. I am a RN with a medical background so I researched my symptoms and was not satisfied with being told I did not have lyme. I had a bull eye's rash which when it occurred i thought was a spider bite. then I began to have all these weird symptoms that did not make sense. So I ended up finding a lyme md on the internet and doing a skype call first. then I found a llmd close to home 11/2 hrs away.

well the llmd and my medical md had a disagreement and the llmd said due to his relationship socially with my medical md, he could not see me and he referred me to another llmd 4 hrs away from my home. which turned out to be good cause the md he referred me too is a much more qualified lyme doctor.

2 weeks ago, the second lyme md confirmed I do indeed have lyme and I started treatment this week.

I was very upset with my diagnosis and angry and I said why me? but I have realized that we can heal and there are many success stories of people recovering and living full lives. You are not going to die. I know it feels that way now, but it will get better. just take one day at a time.

I also feel your pain about your family and friends. My family thinks I am mentally ill and so does a few members of my husbands family due to the suffering I have been thru over the last 10 yrs. I am sure a few friends of mine may think I am a hypochondriac. but I know I am not, and this is my strength. my belief in myself and who I really am, that is that keeps me alive. and that will keep you alive too. Who you know you are,inside.

if you have one thing you really enjoy do it and alot of it. spiritual and emotional healing is very important. I have two horses and I am too sick to ride but I spent alot of time with them, just on the ground. and with my cats. they are my joy now. I read and try to do things while I am ill that keeps me staying positive. I also see a therapist to help me deal with this disease and to heal any emotional wounds that could contribute to my impaired immunity.

I hope this helps. you will get thru this. jackie
Posted 10/18/2013 11:28 PM (GMT -7)
Jackie why treatments are you starting with?

Thanks for replying it really means a lot

Steph
Posted 10/19/2013 11:06 AM (GMT -7)
hi stephanie, well the md ordered difulcan, nystatin and innate flora to prevent damage to my intestines while on antibiotic. Also, I was put on 2 antibiotics. rifampin and azithromycin. I was already on stephen buhner protocol which are herbs andrographis, cats claw, and reservertrol. he said to continue this. he also ordered some supplements that would support my immune system to help me heal.

right now I take vicodin for my headaches and body aches as needed, and I am doing the epsom salt baths while herx ing. trying to eat right and drink alot of fluid. I plan on getting the mercury based amalgam out of my teeth.

something else that has helped me is I went on a gluten free diet, and I found out I had hashimontos disease which is one of 2 types of hypothyroidism. I had an md who agreed to switch me from synthyroid to armour thyroid which really improved my fatigue and my mental cognition.

I also take vitamin d for that is low when you have lyme or hashi disease.

I hope this helps.
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