Havn't been on for a while, I havn't had much to complain about. I just wanted to give people hope out there. I have Lyme Disease and there is hope even if the light seems dim. I developed severe Autonomic Dysfunction as a result of my LD and was told this is how I would be for the rest of my life. I went to a LLMD a few months ago and now I am finally being treated and almost cured. My migrains, joint pain, muscle spasms, stomach spasms are all gone. My life is back. I even have my energy back and started working out again. As for my AD I have not had another fainting episode since taking the antibiotics, and no more dizzy spells. My LLMD saved my life and finally on an open-ended antibiotic plan and combo of meds that help me. Please Please Please if you think you have Lyme and Doctors are telling you are crazy you are not. Go see a LLMD and get your life back. I thought I was dying and was told i have AD, Lupis, MS, Brain Cancer, Brain Seizures, or that it was all in my head, everything but Lyme even though I was a classic case with the bullseye. So keep fighting and don't give up.
Good to hear from you -- and especially to hear that you are doing so much better.
Your comments about autonomic dysfunction are quite interesting ... it sent me off to read about it, and my first stop, at wikipedia, found this:
"Dysautonomia is associated with ***Lyme disease***, primary biliary cirrhosis, multiple system atrophy (Shy-Drager syndrome), Ehlers-Danlos syndrome, and Marfan syndrome for reasons that are not fully understood. In a study on orthostatic intolerance and EDS it is suggested the occurrence of these syndromes together can be attributed to the abnormal connective tissue in dependent blood vessels of those with EDS, which permits veins to distend excessively in response to ordinary hydrostatic pressures. This in turn leads to increased venous pooling and its hemodynamic and symptomatic consequences."
"Symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person's quality of life. Each patient with dysautonomia is different—some are affected only mildly while others are left completely bedridden and disabled.
"The primary symptoms that present in patients with dysautonomia are:
* Excessive fatigue
* Excessive thirst (polydipsia)
* Lightheadedness, dizziness or vertigo
* Feelings of anxiety or panic (not mentally induced)
* Rapid heart rate or slow heart rate
* Orthostatic hypotension, sometimes resulting in syncope (fainting)
"Other symptoms frequently associated with dysautonomia include: headaches, pallor, malaise, facial flushing, salt cravings, constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures.  A full list of symptoms may be found at the Dysautonomia Information Network."
Wow! This pulls together a bunch of things for me, both physical and seemingly psychological symptoms: "Feelings of anxiety or panic (not mentally induced)".
I've been on thyroid supplements for several months now, and it has made a huge difference. Also added Vit D3 supplements, and my energy is higher, my ability to concentrate and organize things is back, and life in general is so much better.
As you say: "So keep fighting and don't give up"! Thanks very much for your post, and wishing you a very wonderful new year and continued good health and improvement.
Trust me I did my research too. I think I know more about the disease and diseases associated with it than specialist. Actually I want to start a non-profit organization for research and to get the word out to familys suffering with Lyme. I know many familys who have multiple people dissabled by the disease. In my family almost everyone has had it but I am the only only one with a cronic case. About 6 months ago I couldn't even get out of the house and was seriously considering being on dissability because I could barely walk without severe arthritis and muscle pain, my neck was stiff and had migrains daily, I had frequent fainting spells and dizzy, had trouble seeing , constantly choking on my own saliva, and extreamly fatiqued and I was only 27. Now most of those symptoms are completely gone. By the way...I found that Tetracycline works better than Doxy but gave me a killer herxheimer at first. I couldn't even get out of bed cause was in soooo much pain and fatigue for the first week or 2 but now I feel like I did before lyme 2 years ago. If someone feels like Doxy is just not cutting it tell them to have the doctor give them high doses of Tetra but warn them thy will feel worst before they feel better. Thanx.
lymes is undertreated by CDC guidelines....i was shocked to read that the 100mg twice a day dose for doxycycline recommended by CDC is a bacterioSTATIC dose....it will only stop d bugs from multiplying but not kill them !! whats worse is that bugs exposed to lower than the killing doses quickly become resistant and stop responding to the drug...
lymes is obviously a very stubborn infection to treat....it compares with tuberculosis and leprosy as far as its ability to become immune to drugs....if u read about treatment protocols for tuberculosis...the shortest is SIX MONTHS with the minimum of THREE DRUGS and upto five drugs!!
Lymes too has ''special needs!''...u gotta hit it with drug combos and treatment may take months..........many docs are afraid to give drug combos or high doses due to side effects...not knowing that untreated infection is far riskier (Dr Joseph Burrascano)....but theres a way to reduce side effects from antibiotics.....lots of yoghurt/probiotics taken at night , atleast 2 hrs after your antibiotics will keep your gut healthy... if u r on I/V rocephin....actagall and metronidazole will prevent the side effects of gallstones and the dreaded colitis....
I think I have been overdoing it but ive been eating almost half a kg of yogurt everyday (yum)...got an excuse now to overeat something i always loved eating...lol
u r lucky to have an llmd who wasnt afraid to treat you....my last doc wanted me to stop antibiotics...he thought i'd had enough...
LYME BUGS THEY DIE HARD....BUT THEY DIE IF U TRY HARD!!
GOOD LUCK TO YOU AND ALL OF US HERE TO BE HEALTHY AND WELL SOON!
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