I have most of your symptoms. Lyme can mimic over 300 different diseases. From what I see you have Lyme and maybe some co-infections, a LLMD can determine that.
Since you had it for so long I will be hard to get rid of it or to get it under control. Go to a LLMD and find a good nutritionist one who knows Lyme. I went the route with pills; since I had it for so long the drugs did not work. My nutritionist, who has Lyme, has me on the right track. Iím feeling a lot better; but still have a long way to go.
How are things these days amccullum22? Everything continues to progress for me. I am doing a trial of doxycycline for 6 months to see if I possibly have Lyme Disease. I tested negative but they aren't always reliable. Give us an update.
Hey, I've had good weeks and bad weeks. It's beyond frustrating. Some days I am so spaced out of it (brain fog) that it almost seems like I am not even here. Just completely zoned out - and brain feels extremely fatigued. The eye floaters have gotten progressively worse Sigh.... The anxiety meds have helped me cope better but haven't changed the symptoms.
I am currently 37 weeks pregnant and still seeing a neurologist also. Hopefully after I deliver they can 'experiment' with somethings.
Glad to hear things are progressing for you. Please keep us posted on the 6 month trial! Wouldn't it be a life saver if it worked?
The following user gives a hug of support to amccullum22: sjb (09-30-2011)
So I delivered a baby girl last week and now am refocused on getting my health sorted out! I need to feel better. I just wanted to reply to a few posts – had a few questions for some of you:
Thanks everyone. Keeping you all in my thoughts and prayers.
Last edited by Administrator; 10-16-2012 at 08:29 PM.
hi everyone. I did not read all the comments posted in this discussion but I just wanted to let everyone know that lyme disease testing is very inaccurate and even with a negative test result you can still very much have lyme. I have a severe case and was misdiagnosed for many years and if I had known what I know now and had gone to a lyme disease specialist when I first started having symptoms I would not be in the condition I'm in today.
The Following User Says Thank You to jess19898 For This Useful Post: sjb (10-10-2011)
Angela, Jess & sydneysMom & Everyone,
I had no quality of life for many years. I now believe it was a combination of things. Chemical exposure, Mold exposure, new carpet and pad. I have taken all kinds of anti-depressants that have even more side-affects. A sleep study result said I wasn't going into a deep enough sleep and prescribed ritilin. That was the ONLY thing that got me up in the mornings. I've been better and worse at times. They say: Chronic Fatigue Syndrome, Fibromyalgia, Lymes, POTS. I've taken vitamins, minerals, IV's of Hydrogen Peroxide, B-12 injections..... I think the main issue is POTS and Hypotension. My heart rate is 100 while my BP is 85/70. I am 6' tall and 160 lbs. My chest hurts all the time! I had to PUSH my heart Dr. to listen to me. After goine thru all the tests, and hearing "low bp is good!" 100 times, I finally got to the Electricalcardiologist and had an ablation. He described it as a car misfiring. My heart tried to start up and would fill up with blood and start all over again. Missed beats, and many extra beats at different times. I felt better than I ever had! I could run without being out of breath! I NEVER remembered being able to do that! 6 months after the operation...my symptoms have slowly made their way back. It's been 2 years and I am going to have to do something. Some doctors say I have to find the source of what is making my heart do that...but offer no answers. The stimulant meds I take now is nuvidal...but guess what the side affects are...increased heart rate....Argh... I agree.....TOO many of us have this thing...whatever it is...for us to not find the answer and soon!!!
I think I am going to wind up going to Mayo Clinic, Cleveland Clinic or USC Medical School with all my records and saying, "PLEASE do a study on me".
Any clues are good.
Wishing you all lots of good days....in a row.
Tammy in SC
I came down with POTS and OI when I was 18 but it took a year and a half to get my diagnosis. Its because doctors are not educated on it and you have to see an ANS specialist.
I saw Dr. Goodman at Mayo in Scottsdale and he was amazing. Unfortunately due to loosing my job, my insurance change wouldnt let me see him anymore.
The tilt table test is the only way to get an accurate one, but you can do the "Poor mans tilt". Does your hr raise at least 30 points when you stand? You can have POTS without OI (hyper POTS)
I have found that CFS, POTS,OI are basically interchangeable. They are all under the dysautonomia umbrella. I wouldnt worry about the CFS until you rule out POTS first, because my fatigue from that is terrible.
When I did my TTT my blood pressure drop to 52/20 and my heart rate when to 194 after 6 mins. However, on a normal day it usually is around 90/60 and my resting hr is around 90 bpm.
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I have to say this all sounds way too familiar!! I am happy (and sad) that there are others experiencing the same. I could list all the symptoms but you've mentioned them all already! (including feeling like passing out under bright lights, disconnected (Dream like) and even clearing your throat). Hopefully we can bounce enough ideas off each other to figure SOMETHING out!
I wanted to share some thoughts with all of you.
-I tried going to a naturopath and took a food allergy test to find that I was "sensitive" to SO many things. I stopped eating all those foods for over a year with no much improvement. (Could work for you guys though)
-I thought maybe it was low stomach acid and I wasnt absorbing vit/mins well. I took HCl pills for awhile and they showed my acids were low. They are now better but with no improvement (Again, might work for you guys. Might not be the answer but could help with some symptoms?)
-This slowly started over the years with fatigue being the starting and bags under my eyes. I remember getting "Swine flu" and being so foggy I couldnt do anything. Since then I feel like it never cleared and now have many other symptoms
-I was on tetracycline for over the recommended time (1 year)
-I know I have iron deficiency. This is something you guys might want to look into if you havent already. I am working on getting that up but conventional doctors seem to think "its fine", but I know its low
-I have SVT (heart) and went to doctors years ago who just told me its normal and its nothing to worry about
-I have another condition related to my kidneys (but they say its harmless too)
That's what comes to mind so far. I hope we can figure something out. I am SO sick of this and SO sick of doctors blowing me off.
Weird thing is for me nothing is ever consistent. Some days one symptom is better, somedays worse and I cant relate it to anything (weather, sleep, etc..). I also get body (flu like) aches all over at random times (which I dont think anyone else mentioned). What about you?