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Posted 10/5/2015 6:37 AM (GMT 0)
Hi I'm new to this awful disease.

I think that I have been misdiagnosed for 27 years. It started when I was 10 years old. I had a rash on my chest and since I lived on a farm the doctor said it was probably ring worm from the cows and put me on a cream until the rash went away. The rash went away, but then I started to have headaches and sore neck. My parents took me to doctors, had a CT and MRI. Everything is normal and told my mom that sometimes kids fake this to get out of going to school. I then saw chiropractor and was told I have a pinched nerve in my neck which causes the headaches. I missed a lot of school because it was hard to concentrate. I had headaches daily for 4 years.

I did okay the first year of high school. Then I was getting my period twice a month and chronic fatigue. Got tested for anemia and once again everything is normal. I stayed home a lot because I couldn't sleep at night but I couldn't get out of bed in the morning until noon. My parents took me to a psychologist and was told that I was depressed. I was put on Prozac and tried Wellbutrin. I told the doctor that it is not helping me. By this time I was missing so much school that I got kicked out.

My mom took me to a natural doctor in my late teens. I was told I had adrenal fatigue, hypothyroid, low progesterone and low in vitamins. I took 20-27 different supplements and vitamins daily. This seemed to help for about 4 years. I was able to function and hold down a job. I moved out of my parents house. Since the doctor was out of network and I was feeling better I couldn't afford all this on my own. I went off the meds and did well.

In my mid twenties I had terrible sciatic issues and had to leave my job. I had injections into my spine but the pain never went away. Around this time I met a nice man and told him about my past and he was so supportive. We got married and I went back to school to become a surgical tech.

During my schooling I started with abdominal cramps and blackouts. I had my first colonoscopy and they removed a precancerous polyp. For my blackout I did a tilt table test and sent home with a heart monitor. Every time I had a blackout I pressed a button on the box to record my heartbeat. The one registered at 197 beets a minute. The Doctor did nothing for me and sent me home. Around this time I also had an issue with my lower right leg noticeable swelling up. I went to the ER because I thought I maybe had a blood clot. No everything is normal and told it might be bursitis. By this time in my life I lost count of all the lab draws, ultrasounds, CT,and MRI.

After school I got a job but still felt sick everyday. I wished that I would just pass out in the hallway so that someone would have to do something for me. I kept working every day. I left work feeling dizzy every day. I thought maybe the stress of being on call was too much. I quit and started a new job at an out patient surgery center. I thought that no call and no weekends would be less stressful.

I started my new job but only got worse. My food was coming out so fast that it was not being digested. It looked like someone threw food in a blender and dumped it in the toilet. I lost a lot of weight and was told I have IBS. After a couple of months I had a lot of blood in my urin. I was told that I had a UTI. Also at this time I went 1year without a period. Got tested if I was premenopausal but once again the test came back normal.

I kept working until my abdomen started to swell up so bad that I had to walk with my back arched and my knees bow legged. It looked like I was 8 months pregnant and had a hard time breathing. I couldn't work anymore it was like I mentally and physically checked out of my body.

By this time I had my third colonoscopy and EGD. The only result is that I had GERD and still IBS. I went through numerous GI tests and even ate radioactive eggs for a gastric empty test. Everything came back normal. Through a family member I was told about a great doctor but he was out of network. I was desperate for answers. Once again blood draws. I had hypothyroid, Candida,low progesterone and testosterone. Once again the meds didn't help. After a couple of months I went in for my once a month visit and told him my body aches,I have a sore neck and I am getting blackouts again. He asked if I was ever tested for Lyme. I said no. So I got tested and came back positive. I Thought YAY, finally a diagnosis that makes sense. Little did I know what I was in for! I have been on antibiotics and other supplements since February 2015 and I have never been sicker. Every day now I stutter bad and sometimes can't talk at all. The longest I went without talking is 7 days in a row. I feel like I have Alzheimer's when I ask my husband the same question over and over again. My walking isn't that great anymore. I get shakey arms and legs. All my old symptoms from the past are back daily. I could go on and on with symptoms. I feel like the meds made everything in my body go crazy. I am seeing a LLMD since April 2015. I even got a sauna and take salt baths to detox. I am currently trying A-BAB. I got up to 6 drops a day but had a seizure so I had to back down to 4 drops. I feel so lost and sick. I am sorry that this is such a long story. I thought that I could do this on my own but I can't. If someone could please write back if they also got a lot sicker.

Thank You!
Posted 10/5/2015 11:35 AM (GMT 0)
Hi LB, I just wanted to say hi and welcome, only sorry its not under better circumstances.

Many, many folks here will identify with some if not all of your symptoms, me included, and will also be able to give you great advice whenever you need it :)

There is a lot of great info in the 'new to lyme' thread at the top of the posts page and is a great place to start reading.

The important thing to remember is that you are not alone! There is acres and acres of support here and there is no need to do it alone!!

Keep on posting, asking questions, whatever you need to do to get yourself on to the road to healing :)
Posted 10/5/2015 11:50 AM (GMT 0)
Hi! Silly Sheep,

I Appreciate the welcoming! A couple of months ago I read some of your posts when I was in a bad place. You have a great sense of humor and made me laugh. This was something that I desperately needed!

Thank You!
Posted 10/5/2015 12:21 PM (GMT 0)
Welcome Little Bear!!!

So sorry for all you've endured and continue to endure!! ((Hugs))

Yes, as others have mentioned, we often feel worse....much worse....during treatment.

The reason being the toxins released by the bacteria as they die.

While it's great you are doing sauna and foot soaks, adding many more things to your detox protocol will only help. There are great suggestions in the "New to Lyme" thread at the top of the forum including a link to this site:

www.tiredoflyme.com/detox-methods.html

Detoxing makes a HUGE difference in how we manage our treatments.

Best wishes to you moving forward!! Hope you'll visit often and avail yourself of the support and knowledge that is quite prevalent on this forum.
Posted 10/5/2015 12:54 PM (GMT 0)
Meds I am currently taking:

Cefuroxime 500 mg (4 daily)
Clarithromycin 500 mg (2 daily)
Nystatin 500000 (4 daily)
Fluconazole 150 mg (1 on Sunday)
Cod liver oil 1000 mg (3 daily)
Vitamin C 1000 mg (3 daily)
Vitamin D3 4000 iu (1 daily)
Women multivitamin (1daily)
Ultimate Flora 50 billion (1 daily)
Two different thyroid meds (1 each daily)
Temazepam 15 mg (1 at bedtime)
A-bab (4 drops daily) - trying to increase!

Yeah I can't lie! I try to get in the sauna and salt bath everyday, but sometimes too exhausted. On these days I am just happy to have enough energy to shower.
Posted 10/6/2015 10:13 AM (GMT 0)
Yeah, I know that bad place, I hate it. That's why when I ain't there I like to hope I make others feel better.

That and I was always a bit 'mad' before lyme bit me, lol.

Laughter is the best medicine. Well, laughing while detoxing is better, right??

Hang in there :)
Posted 10/15/2017 2:35 PM (GMT 0)
Hi Little Bear - I was wondering if you've made much progress since your first post here?
Posted 10/15/2017 7:56 PM (GMT 0)
Hi gfields!-

I wish that I would be able to tell you that I am "cured" and busy living a full and happy, healthy life. But that is Not the case for me yet. I am currently not as sick, as when I first posted this thread; but I am still looking for answers to be well.

I took antibiotics, herbs, supplements, detox daily for over 1 year and 4 months. I tried getting rid of Lyme, Babesia,and Bartonella. I personally didn't have any luck. The only thing that helped me was Byron White A-Inflam. This helped me with my daily stuttering (I stuttered every day for over a year, except for the days that I was unable to speak). I still have episodes of stuttering for a day, but it now only happens a couple of times a month and Not every day.

Since I was getting nowhere with treatment for Lyme, Babs, Bart, my LLMD and I decided to stop treatment and try Byron White AP. This herbal supplement is used for Parasites, Candida, and mold. I started the AP in July, 2016 through December 2016. I broke out with severe acne on my back, abdomen, shoulders, thighs, and buttock. I would get clear bumps that would form on my left eyeball. I would cough up oblong jelly like mucous things. I had a couple of episodes in my sauna that my husband said that I smelled like a moldy gym shoe. I even smelled like this after showering. I had one episode in the sauna that my body was sweating out a lot of ammonia. It smelled like a bunch of cats urinated in the sauna. I was unable to stay in the sauna for my usual time. My eyes and nose were burning and watering so much because of the smell.

January 2017, I started Dr. Klinghardt parasite protocol. I did two rounds of the protocol. The only thing that was consistent was that I didn't stutter at all during the treatment.

A couple of months ago I made an appointment with another Dr. who is also Lyme friendly. After listening to my story, he suspected that mold might be what is holding me back. Through some lab testing, I found out that I have a mold sensitivity pattern. My MSH is too low and my TGF-beta1 is too high. Supposedly, my Dr. told me that these are cardinal symptoms of a damaged immune system. And explains my relapsing.

So, currently I am taking Cholestyramine. This kind of turned into a mess. The Dr. wanted me to get this med from a compound pharmacy. The pharmacy contacted me and said that it would cost me $425 for 1 month supply. This is too much money to be spending on something that I don't know if it will help me or not. My spare bedroom looks like a pharmacy already from ALL the meds, herbs, supplements that I have tried over the last several years. I really don't need to add to the collection.

So, I called the Dr. and said that it costs too much. He then called me back and told me about goodrx.com. I looked up Cholestyramine and was able to get a canister for $40. I was so happy! My Dr. said that the canister would last me through the whole month.

The thing that nobody knew of was that the canister was full of worthless additives!! It says on the canister, "4 grams Cholestyramine resin per scoop full." On the side of the canister says,"Each scoopful (9grams) of Cholestyramine powder contains 4 grams of Cholestyramine resin." So, what is in the other 5grams of powder in the scoopful???

So instead of this canister lasting me for a month, it only lasted for 10 days. I don't know if it is helping or not.

Sorry, I wish that I had the answers. I am so sick of being a human lab rat.

I hope that you have better luck with figuring this out than I have had.

Best Wishes!
Posted Today 4:09 AM (GMT 0)
Hi, was wondering if you have improvement. My story is quite similar and I am no better today than the day I started treating.

Was hoping you were having success and would like to share.

Thank you,

pjmrees
Posted Today 9:47 PM (GMT 0)
pjmrees-Little Bear hasn't been on the board for a few weeks and often goes months without coming on. You'll get more help if you post a new thread explaining your situation and asking specific questions.

Janet
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