I am writing here as i find these boards are the only place people can really understand even remotely about things. Two years ago i was on cloud 9. I was studying towards my degree and very happily married. I had had a couple of months of severe constipation out of nowhere. I was not sure what the cause was and tried so many different things to relieve it. It did seem to disappear for a little bit. By the end of November 2013 my husband and i decided to try for a baby and by December i found out i was pregnant. In early November i had some dental work done and a root canal.
I started to feel a bit off at times (spacey), and had light sensitivity to indoor lighting. I just put it down to the pregnancy and maybe hormones and ignored it. I could tell a week after my positive pregnancy result that something wasn't right. A few days later i miscarried.
I felt ok for a few weeks after this as far as those symptoms went, and then randomly one day they came back and have been constant ever since. The first complaints were the following and started in January:
Constant spacey feeling (Constantly feeling off, drugged almost, not like i am in reality) Extreme light sensitivity but only to inside lighting (i actually feel pretty normal in natural lighting outside which is a bit weird because i hear most lyme sufferers have natural light sensitivity), but indoor light always look just off and spacey and bright to me. Severe constipation (Stools are always pellet like with lots of mucus in stool Achy neck Severe tiredness Anxiety Depression Constant sore throat Itching in/behind ears, itchy armpits
I saw tons of doctors, none who knew what was wrong. One said it was a bad sinus infection and prescribed ceftin. Ceftin made me feel x10 worse and like i was dying. I looked this up as it didn't seem right and read about herx reactions with lyme disease, but nothing about herx reactions from a sinus infection! I was not convinced it was just a sinus infection and continued to pursue answers.
A few forums started to point me towards lyme and thinking this could be the culprit. I tested negative for lots of co-infections and the lyme test. The doc also tested my CD57 which was a 62. She said this was low, but most with chronic lyme are below a 60 and so that ruled out her thoughts of me having lyme. My ATP was also a 19. I supplemented with ATP fuel she had given me, but when i went back the ATP number was even lower. Her diagnosis was CFS and Fibro. We also discovered i had reactivated EBV, gallstones, and high blood sugar (pre-diabetic).
The weird thing is that by August i slowly started to have issues with tingling, numbness, loss of sensation in area of my body, joint pain (specifically in my hands and finger joints) I also get really heavy feeling calf muscles and twitch in many places over my body too. This twitching also started about 7 months after my first symptoms started. I twitch in my calfs, eyelids, arms, legs, and even bottoms of feet. My hand pain in the joints and loss of sensation in them along with a weird burning sensation in them is now probably one of my most bothersome symptoms. When i type a lot my fingers drag the keyboard and the whole of my arms feel tired and my joints hurt. My hands also cramp all the time. My biceps also feel tight and tired and achy. The other most bothersome symptom is by far the constant spacey feeling and the light sensitivity inside to artificial lighting.
I was not convinced that lyme could not still be a possibility, so i went to see another doctor who did in fact run the igenex test and some other tests. He found:
IGENEX/IGM RESULT positive CDC/NYS RESULT positive
18 + 31 + 39 + 41 +
I also had high reverse T3 serum, high DHEA-sulfate, high M pneumoniae IgG Abs, and two copies of the same mutation (A1298C/A1298C) identified.
I found out all these results online but was never contacted through the office for these results even though they said they would call. I found my treatment unsatisfactory and decided to seek my treatment elsewhere.
I am trying to stay positive but i feel absolutely helpless. I am on the waiting list for two doctors but i believe both have months of waiting because they are very popular. I am losing hope and never seem to read about many getting better. I also have other weird issues that no one can find the reasons to. I have been tested over and over for bladder infections because my urine is constantly cloudy and has a strong odor, yet no infection is present although wbc are. My lower back always aches also. I have lots of gyno issues. Constant itching down below and discharge. I feel like i will never have my life back and sometimes i wonder if this is all lyme related or i have many other issues. I can't ever seem to find a doctor willing enough to just keep testing for lots of possibilities.
I feel like my illness is progressing as new symptoms have appeared. Does lyme have more symptoms happen randomly months later? I thought most had the same constant symptoms throughout that went away maybe for a few days or weeks, but not new ones come on 7 months after the first lot of symptoms?
I don't have much support at all and feel very alone. I live back with my parents now as my husband wasn't very supportive and my illness started to push some distance between us and we finally separated. I worry daily that this will kill me and that some of my symptoms could even be the onset of ALS. I feel depressed and i am trying to stay positive but it is so hard. I wonder how much of this is other stuff opposed to lyme. I am only 25 and i feel like my life has been taken away from me and i will never get it back. I wonder how long it will be until i may not even be able to type anymore, because it feels like my hands are getting worse.
I have also had excessive thirst now for a very long time. I often wake up in the middle of the night with severe dry mouth and have to get a glass of water. It seems no matter how much water i drink though i am still thirsty. I also woke up today with a sore throat and white patches on the sides of my throat. The sore throat randomly went away for months, but now it seems to be back. I am sorry for my long rant post, i just feel helpless right now.
-------------------- Lucy Posts: 9 | From Texas | Registered: Mar 2015
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