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Old 04-09-2017, 11:21 AM #1 (permalink)
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Default Is this lyme? Please advise

I apologize for this being so long just bare with me I want to give all information possible.
I had a full hysterectomy or so I thought October 30 2012 at 35 because I had 2 abnormal paps and endometriosis. Long story short the Dr left partial ovary in after this procedure that resulted in 2 masses forming over my urethra causing obstricted kidney function. The first time the masses appeared was April 2013 and a drainage line was placed in my stomach with a bag attached to drain them for a week. After the week everything went back to normal. 4 months later 2 more masses were found again and the obgyn decided to do a surgery to open the masses and let them drain. He cut an artery which was not realized until after I woke up that resulted in another doctor putting me under to fix the artery. This procedure did not work either so I was referred to an oncology gynecologist. He told me he suspected a partial ovary had been left inside so on October 3 2013 I had a robotic surgery to have it taken out. 8 surgeries later between 2012 and 2013 I recovered and no more masses or pain. 2014 was the best year of my life. I was happy, healthy, and looking forward to a great future.
January 2015 I thought I had a cold because I was feeling very tired etc. By the end of January something felt like a switch was turned off inside my brain. I was always a very active multitasking woman but something had changed. I walked 5 miles a day and was always doing something but all of a sudden by the end of January it was like I was paralyzed in my body and I did nothing but sit in the rocking chair wrapped in a blanket all day. February came and I decided to see a gynecologist to ask if I needed to start on hormones. Instead she gave me Zoloft and said I would be fine. To save a lot of details I basically got passed to 6 different psychiatrist after psychiatrist for the remaining year telling me I was just depressed even though I told them I had no reason to be depressed I thought I needed hormones. I was tried with probably 12 different medications two at once even over the course of 2015 up until November that year when they took me off everything and that made my brain go into a tailspin. I developed akathesia where my brain was so messed up I walked my house non stop for six weeks I had to be in constant motion only time I didn't walk was a few hours a night when I slept at that time ambien worked for a couple hours. Psychiatrist had to prescribe something I can't remember what so I could sit down finally. After that experience I did not go back on another antidepressant.
2016 brought more doctors from obgyn to neurologist to rheumatologist to holistic doctors. Everyone had their own opinions. Over the course of 2016 I was finally prescribed estrogen and progestrone but it did nothing for me either. Still not getting any better I went to a homeopathic doctor and had bioidentical hormone pellets put in October 2016. The naturopath Dr tried to say I had heavy metal and mold toxicity and a leaky gut but I know I do not have mold toxicity. She then said it could be lyme disease which fits better but did not want to give me an antibiotic so I even tried rectal ozone treatments desperately wanting any type of solution but that again did not work. I had a western blot lyme test done that came back negative but i do know they are not that reliable. She did give me nystatin saying I had a bad candida infection.
I have been told since this started Jan 2015 to now that I have had everything from depression to menopause to lupus to EBV to heavy metal toxicity to mold illness to hypothyroidism to migrane headaches. I have had 2 mris, an eeg and a qeeg which i was told my brain was on fire.
Recently i found an endocrinologist he told me my heart rate was not right and wanted me to go to the er but I didn't. I have spikes as well with both my blood pressure and my sugar which I never had before. I also have tripled cholesterol and triglycerides since this started. He also told me besides not eating and being vitamin deficient my hormones looked fine other than a high level of testosterone. I still get this strangling feeling even not taking medicine but he said my thyroid was fine.
I never thought that it was the hysterectomy because the hormones nor the antidepressants have worked and I am not getting the typical menopause symptoms. I have had no hot flashes or night sweats and am constantly freezing. I have seen 18 different specialist, had 2 stays in the hospital, and nothing that I do helps. I have gained an excessive amount of weight about 75 pounds despite not eating enough to keep a bird alive, have days where I get panic arracks, crying spells, and what feels like a telephone vibrating under my scalp. I have a tremor in my hand when I try to pick things up. I no longer can do anything because my mind feels like it is constantly on and I feel so fatiged. I no longer feel anything never feel hungry, thirsty, tired, sleepy, or even love. My stomach always feels full why I don't eat or drink much. Even just eating chicken soup makes me vomit some days. My head hurts so bad some days i think it will explode because of the pressure. My short term memory is horrible. I can only sleep an hour or two then I wake up and probably get netween 2 an 4 hours total sleep a day and that is only after taking tylenol, benadryl, and tryptophan pills. I can barely get out of bed anymore and I have no clue what to do next. The more I read about lyme disease complications I wonder if perhaps all of this that I am experiencing could be from it. I still feel like whatever switch was turned off in my brain has not turned back on no matter what is tried.

I just want the woman I was in 2014 back and to be able to take care of my family. I was on my way to a great happy life i thought but now i cant even imagine another day of this torture that seems to just get worse as time goes on. Any suggestions would be greatly appreciated. Thank you
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Old 04-09-2017, 08:26 PM #2 (permalink)
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Default Re: Is this lyme? Please advise

Hi Goldie, your symptoms and experiences sound very troubling and difficult to handle. You must be so frustrated, I know I would be. What a struggle!

Your symptoms seem extreme; did you have any known contact with the outdoors or any discernible rash in the past 2-3 years. Not all Lyme cases have the well known "bulls eye" rash; but I thought I would ask.

Finding a good doctor can be difficult but with all the struggles you're having I think you have to keep trying to find someone that not only understands, but can help understand and figure out what it is you're suffering from.

From memory, were your symptoms prior to depression or post?
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Old 04-10-2017, 06:19 AM #3 (permalink)
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Default Re: Is this lyme? Please advise

Prior to all this I was never depressed. I had a great life always happy, smiling, singing etc. I have had personal trials but nothing even close to this. I lost most of my vision when my optic nerves started dying when I was 14 but I retaught myself how to do everything because I did not want help I was a strong independant woman. This pushed me to go on and get my masters degree in Rehabilitation Counseling to help others.
I never noticed any rash. We were at my mother in laws for Christmas then after I came home is when I started feeling sick I could never bounce back from it for some reason. It is a wooded area.
The thing the naturopath doctor was concerned with was my TGFBETA Factor was 30,000 and C4a was 21,000. This is why she suspected an environmental toxin was causing my problems.
I have never had anything in my life I could not beat so this does have me puzzled and I just don't know where to go or who to ask since I have pretty much been to several different types of doctors. Thank you again for reading.
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