My name is Shannon and I dont know if this is the right place to start... or actually continue looking, but i am at a Mystery Diagnoses stage in my life, am terrified, and really looking for anyone that can help me at this point. I know it's a bit long but anybody that thinks they may have some advise or can help Please Read!!
For the majority of my life I have had different medical problems hear and their, with pain being a big aspect, and as a child I was always brushed of as a hypercondriact. Doctors started taking me seriously once I was a teen and, while living in Jamaica temporarily, I injured my jaw. After some time it ended up deteriorating and finally needing complete joint replacement. About 5 years ago after one of my many surgeries things started really going down hill. I was sick all the time always on antibiotics, had severe pain ranging almost everywhere at that point and a whole lot of other little things that didnt really seem important untill now.
About two years ago, after seeing about 40 different doctors, and having to quit my job because I couldnt even work at a desk job at that point... I met a girl that was quite sick aswell. We talked and after relizing one to many similarities between us, she begged me to go get tested for Lyme Disease. I never remember getting bit by a tick but I used to work in a vets office and, had so many bugs bite me in Jamaica, I figured anything was possible. Low and behold I was positive for Lyme Disease and Bartinella (a co-infection). I was quite content at that point, I relized I was gonna have a tough road ahead of me but I was so happy I finally got a diagnoses. I knew I was going to eventually be ok... or so I thought... Boy was I wrong!!!
I started IV antibiotic treatment for my Lyme Disease almost 2 years ago and everything went down hill even more from their. I was seeing a Infectious Disease specialist in Tampa, it was a long drive but a good doctor was worth it. After 4 picc lines, severe memory loss, a heart infection, severe stomache problems, several hospital stays and no progress the doctor finally did what every other doctor has, and gave up, said he didnt know what else to do for me. At this point he had already determined that I most likely have had lyme disease for 20 years and it had gone to my brain awhile ago. It seemed like an exceptable diagnoses untill all the treatments that were suppose to work, failed miserablely and actually made me worse. The lyme disease, especially for that long, just didnt make a whole lot of sense anymore, specially when the treatments didnt work over such a long period of time.
At this point in my life Im 23 years old and have been pretty much stuck in bed for the past two years, terrified that things are only going to get worse. Although I have severe pain in almost all my joints, I stopped pain pills over a year ago because for some reason medicine doesnt seem to have much effect on my body... No matter how much I take it usually just doesnt work. My mom is undergoing chemo now for breast cancer and is actually doing real well....I wish I could help her more but at this point she is doing better than me. People ask me my symptoms and since some come and go it's usually a two page list but to sum up how I feel on a daily basis..... It's usually me waking up sometime in the afternoon to tired and sore to even get up. When I eventually push myself to do so, I do as much as I can but usually end up lounging around the house with a constant migraine, heart palpitations, shortness of breath, dizyness, numbness in my feet, light headed, nauseaus, no appitite, constant UTI symptoms, severe sweating and chills, no tolerance to heat or cold, muscle spasms, trouble balancing walking down stairs, pain and cracking in all my joints, blurred vision, only have a BM about once every 10 days (with medication).....It pretty much feels like I have a horrible flu and got hit by a bus 24/7. Although my memory has improved a bit and has come back from when I first lost it in the begging of treatment, my long term memory is ok but as for my short term its embarrassing. When I have a conversation on the phone I have to usually ask the person the last time we spoke and what I had said (even if it was earlier that day), usually people just deal with me repeating myself. When it comes to night time its tough to fall asleep with all the anxiety and pain.. but once I finally do I just wake back up the next day to experience it all again. Besides the symptoms I pointed out off the top of my head in my daily life, the doctors have told me that during, and since the lyme treatment I had developed endocriditis (vegetation now healed), diabetes insipidus, hypertension, potassium difficiancy (comes and goes), thickening of my small intestine (trying to figure that out) and although it's said to not be of concern, several lesions in my liver along with a enlarged spleen.
With all that said I am left at a point where im clueless on what doctor to go to or what might be going on with my body...Whatever it is I cant give up because my doctor has...I know deep inside their has been something wrong and I know if I stop trying its the end for me. Im thinking about going out of state since I have had not much successs with South Florida doctors.....But at this point, not thinking its Lyme Disease, im just hoping their is someone out their that can maybe relate or give me some advise to point me in the right direction. I need a proper diagnoses I just dont know where to go or what to look for at this point.
Thank you for reading and anyone with some (serious) advise or help would be greatly appreciated.
-Shannon
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Lyme Disease or Something else....Can anyone Help??
- By Desperate4Help
- Posted October 1, 2009 at 3:32 pm · 4 replies
- In Infectious diseases
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Lyme disease Diabetes Sweating Breast cancer Anxiety Probiotics Constipation Hypertension Pain Memory
4 replies
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- By luckeeluke
- Posted October 2, 2009 at 10:33 pm
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Definitely can relate to some/most of what you said. The more reading/research you do about Lyme, the better off you will be.
If you haven't seen the documentary "Under Our Skin" try and see it. Two books I would recommend are "Cure Unknown" and "Healing Lyme." There are others that are good too.
As far as I can tell had Lyme since 2005, may have even gotten it in early 2000's. I've been on 18 months of oral antibiotics up to this point. Pretty much since March of 2008. Had one or two- three week breaks here or there.
Doing better than I was, but definitely not back to normal. I've had a variety of symptoms-
the most prominent ones being awful headaches, jawaches, sinus headaches, joint aches, stiff muscles, overwhelming fatigue/hit by a Mack truck feeling, light sensitivity, blurred vision, multiple chemical sensitivity with a very strong sense of smell, stiff knotting neck, buzzing inside neck, buzzing/vibrating in legs, tiny muscle twitches, balance/memory/cognitive issues- feels like my brain is trying to work while stuck in molasses (brain fog), food sensitivities like gluten and dairy, cold hands/feet, poor circulation, low blood pressure, greasy stools sometimes and then constipation sometimes, etc. etc. The list goes on and on.
I would reccomend investigating a few other things as well.. .
Cat's Claw herb/Samento for the Lyme
Artemisinin for the Babesia
Kombucha (I just buy GT's brand from the store) and a high count probiotic for you gut- I use Custom Probiotics these seem to work for me.
Fiber such as gluten-free oats or regular oats. Drink some more fluids with the fiber. Blueberries because they are good for you and they have nice amount of fiber.
If you can cut out some gluten, some starches, and some sugar/processed foods. Get back to basics with veggies, meat, fruit. I have heard from many other people with Lyme and I know from my own experiences that many people seem to be gluten intolerant for whatever reason.
I don't know if any of this will help. Let me know.
I can relate for sure. It took me about 2.5 years before I had any tangible answer(s) to why I didn't feel well.
Have a good night Shannon.
- By Amyrosenberg
- Posted October 3, 2009 at 7:18 am
- Report post
Lyme disease bacterium are a lot like those of syphylis bacterium. If your Lyme disease is in the latent stages, you need to keep your immune system in tip top shape and try to have the very best general health possible. Take a lot of vitamins, especially B12 liguid. Eat a lot of fresh fruit, vegetables, and swiss cheese. Eat garlic and onions whenever possible, raw is best. Exercise a lot and sleep eight hours per night. You need to realize that white sugar, white flour, and fast food are not your friend. Stay away from them. When you eat out, go to a gourmet restaurant for lunch. Food cooked by a real chef is just like you would do at home. Tou are worth the extra cost. IF MEDICAL SCIENCE CAN NOT HELP YOU, help yourself.
- By Allisone
- Posted October 4, 2009 at 7:33 am
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Good Morning Shannon;
I have a few thoughts, I would like to share with you. On the internet, there is much information to be found, on the two subjects that I would like to propose, for you to consider.
All our beliefs and thoughts are unique to each of us, and I respect all beliefs, as it is a reflection of self.
My empathy is extended to you, as your road has been long, and testing. Your strength and power, have carried you to this point, and will carry you much further. You have grown greatly, and carry much wisdom, and also much pain.
Healing is important on all levels, physically, emotionally and spiritually. Two angles of approach here;
1- Physically- There is a seventy four minute video, to view on youtube; if you search for Jim Humble, and MMS (Miracle Mineral Supplement). This video will explain some biological understandings; and there is endless resources to substantiate his direction, as well as many testimonials on the internet.
2- Emotionally and Spiritually-A powerful book, to give another viewpoint, on our individual experiences, and the reasoning behind them is "Journey Of Souls" by Michael Newton. After reading this book, then you may understand and consider investigating the spiritual reasons for your testing by going to; drsha.com; and there is many tools for Soul Healing.
It is my honor, and my privilege to share any information that may assist another individual on their healing journey. And I thank you, for the opportunity to share.
Please feel free, to contact me if you have further questions.
Love and Light,
Allisone
- By Zoesclothes
- Posted October 4, 2009 at 9:19 am
- Report post
Shannon, You have been incredibly brave & resilient to have gotten this far. I think I have had most if not every nasty feeling that you describe. I know what it is like to have doctors respond coldly that they knew of nothing they were able to do & dismissed from their practice. After decades of being sick, yet still being called that H word (hypochondriac) by my husband, I got a diagnosis that I am 99% certain is correct. The doctor that you have to have on the team is a rheumatologist. He sometimes is very short tempered with me but I have held my ground. Don't give up. I was thinking about death more than I was thinking about life. Recently, it hit me like a brick to the cranium that i was giving my power over to my husband & a few negative doctors. My life is very similar to yours. I have been on a downward spin until the last few days. In the emergency room after hours of tests and history being taken, I am informed that I have schleroderma. Now this is not wonderful not wonderful knews but I understand your need too know what is going on. I did not start with Schler however, I had been sick long enough for my immunity to be reduced & subject to even worse than my original diagnosis. Look at yourself as having a special knowledge very few people have. Amy is right. Allisones's advice is of great importance also. You have to be your own guardian angel. You must love yourself for the powerhouse you are to have been in the lowest valley & yet you are able to get on your feet. Keep thinking about one foot in front of the other. You must be the shaman; you have the knowledge. We both know what to do. Eat sunflower seeds (raw, no salt) by the handful. Vitamins are your way up, I would be dead without them. I must stop but please remember your job is to keep yourself as strong by sleep & what you put in your stomach (& you need a hit of the B's, especially B 12 and vitamin C. You need A & D & E & others UNDER THE SUPERVISION OF A HEALTH CARE PROFESSIONAL WHO KNOWS WHAT THEY ARE DOING! The vast majority of my suffering was a result of my lack of information. I have to end this but my email is Jmcicool@aol.com & I would ask that you please write me so I know how you are doing. If you do not have a rheum. you have to get that dr. asap. It may be challenging, but you simply have to have one. Are you anemic? Sounds like it. You are not alone; I have the "flu" every night.
Get out there & swing for a home run.
Be well.
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