Post by Lyme Challenged on Oct 6, 2015 17:08:48 GMT -5
My Lyme Journey
By John Coughlin on Tuesday, April 14, 2015 at 4:27pm
Johnny's Lyme symptoms3/26/99 onset of initial symptoms.. to the present 9/10/2015
I am sharing this because i want all my friends to know my Journey and not trying to jinx myself into relapse or looking for attention etc. Just want to show how much i have gone through to get to where i am now..
heart palps including fluttering and pounding and skipping. (haven’t had the fluttering and pounding in years now, but think I still have some damage from having Lyme so long and all the treatments etc.) drank a lot grape juice and berry juices to keep my heart strong..
skin problems . bumps in my scalp, skin rashes showing up in different parts of body, some raised and some blotchy and some like bart like scratches .. (bumps in my scalp would scab up and peel off in a couple of weeks) Haven’t had this in about three years now it’s been good to go..
Fatigue problems.. in the onset the fatigue on a scale of 1 to 10 was a 10 plus and continued as a 7 or 8 most of the time (extreme fatigue issues) I still have fatigue issues but nothing like the onset in 99 things are much more manageable now.
Itchy skin, buggy feeling like bugs crawling in my skin.. I get this once in a blue moon now but nothing like when I was on treatments and felt like scratching my skin off, it was so annoying.. muscle spasms, cramps in hands and legs and shooting pains up my legs, muscle twitching,shooting pains up and down my legs, restless leg at night when laying down. I still have problems with vibrations in legs when i stand too much or take on too much activity in a day..
Muscle twitching still comes and goes but not nearly as often as before.. Sometimes just opening a jar would make my hand cramp up with unbelievable pain..stiffness in my legs in the morning would limp around the house, felt like my legs were locking up.. Much, much better now do not have this in the morning anymore.. Thank God..buzzing and shaking in my legs like my legs were plugged into an electric socket.. Can happen any time of the day or night mostly from over activity i think, but not really sure about that..Noise and Light sensitivity mostly on the onset and subsided a lot after combo abx treatments. Could not even look at the computer screen is bothered my eyes, but pretty much all gone now but i wouldn't go looking into the Sun lol even a normal person wouldn't do that.. Double vision, would last about 10 to twenty minutes and then my eyes would turn to normal.. Got much better during and after treatments.. (dark sunglasses helped a lot) haven't had double vision now since 06 and i hope to God it never comes back..
dizzy and foggy was very severe in the onset of the disease, carried all the way through at different levels until 3 years of combo treatments helped bring them to a very low level now almost normal now.. that outer space feeling is a thing of the past, hoping it stays that way..
Palsy like symptoms in left side of my face and numbness and tightening of face too.. Still have lingering symptoms of this that come and go only for short periods of time.. very limited range of motion in my right shoulder could not throw anything over hand with it just underhand.. Now I can throw over hand but not the same range of motion before Lyme.
Chest problems, including a wheezing, air hunger .. wheezing lasted for three months before it finally subsided .. (really felt like i was dying with this symptom) thank God it’s all gone now and hope it never comes back again. Unexplained cough.. I still get this on occasion but nothing as often and severe as it was in the beginning of the illness.. Standing for long periods. Couldn't stand for too long, usually about 20 minutes max before i would get weary and need to sit down or lay down for a while.. Joint pain.. I didn't get any joint pain until about two years into it.. It was about six years from onset of first symptoms that my legs started to lock up and get stiff in the morning..
Memory problems.. In the onset first year was really bad.. could not remember close friends names that i should know like cream cheese.. still have trouble spelling simple words sometimes, it's like brain freeze maybe from brain damage not sure though..
Problems sleeping has been an issue waking up 3 o'clock in the morning, it's been like clockwork for quite a while .. now it's hit or miss some nights good and once in a while i still wake up early hours in the morning.. Sore throat would come and go at random, especially in the onset of illness and then would be off and on from there.. Now i don't have this problem for quite a good while now and hoping it stays that way, no jinx..
Light headed and brain fog was a big problem, was afraid to leave the house and go anywhere by myself.. felt like i was in outer space or space cadet or something.. felt like i was fainting all the time or going to faint, but now it's mostly gone and nothing like it was in the onset of illness.. Severe dizzy was a big problem, if turn too fast the wrong way i could be on the floor in seconds with the room spinning round and round.. Sometimes the spinning would not stop and i ended up in the ER a few times, only to have the doc yell at me and tell me i didn't have Lyme when i did.. Now thank God the spinning has not happened in about 4 years but sometimes i feel like it could come back, very scary indeed, one of the worst Lyme symptoms in my opinion..
shortness of breath and air hunger was a problem, but not as severe as some others on the net that got this way more severe than I..
swollen Lymph nodes was a problem in the onset and one clinical doctor was sure it was from Lyme even though i had a ton of Lyme tests and doctors telling me i had cfs etc.. He was the only doctor that thought of lifting my arm and checking under my arm pits all the other docs were clueless he called them Nurses lol.. Rashes in the onset were very large and raised and troubling, very itchy and would stay up all night scratching and drawing blood at times, felt like i was in hell for sure.. then later on i had scratch like rashes showing up, especially after a hot shower would bring them out..
concentrations issues was a big problem in the onset and through the beginning years of this whacky disease, there were times i could not concentrate for a minute on anything. Social services lady sent me to boces to learn about computers tech and i only lasted about 10 minutes in the classroom and had to get up and leave.. these people were clueless to late stage Lyme and what it does to people..
Balance issues was a big problem, had to watch myself on a ladder or doing things that require good balance.. fell off a ladder once and it took 3 months for my leg to heal.. VA lady made me walk a straight line, when i just told her i have this problem and i fell over and almost hurt myself.. they just don't believe us or get it do they? very sad indeed being a lymie.. White patches on my feet and legs like dried skin or something.. still have this issue but it really doesn’t bother me much or itch etc. but they are still visible white dots on my feet and legs..
My Treatments..In 99 I had one clinical doc that was sure I had Lyme disease and i was doing Amoxicillin with probenecid 3000 mgs daily .. I did that on and off for three years, a year on and then a year off etc. after a while I realized when I stopped the treatments it got worse, felt better while on the treatments.. In 06 I got so bad I could hardly walk with severe dizzy attacks and double vision, it was then I realized that if I didn’t do something fast I was going to be an invalid soon..
It was in 07 that I found a LLMD and had a PCR and Spect scan proving Lyme and Lyme damage to my brain. Took me two hospitals before I found one that knew what a spect scan was and had the equipment to do it.. Once my diagnosis I was taking doxy for about six months and wasn’t getting much better.. I asked my LLMD if I could try a combo because some I knew were doing ceftin and biaxin at the time combination therapy oral abx..
I was lucky to have two doctors one which was my primary and my Literate working together to help me get better.. I figured if I didn’t do or try something what would be the outcome then, wheelchair? Suicide? I just didn’t want to live like this anymore so I decided for myself to go down fighting and treat the disease.. I know everybody is different so I hope this helps a little that you would find your own protocol that would help you heal..
In between treatments especially when my heart was pounding and skipping I would take a drug holiday when I felt it was really necessary and would do some natural stuff, like oil of oregano drops under tongue.. Olive leaf extract and magnesium for twitching and spasms..
Helpful hints..
one of the biggest things that helped me get better is the wealth of information I found on the net, especially Dr. Burrascanos Lyme guidelines was big help.. www.lymenet.org/BurrGuide200810.pdf
Late Stage patient information www.angelfire.com/me2/StarShar/Herx1.html
Having a LLMD that is willing to work with you and try different things, mine was willing to switch things up when doxy wasn’t working.. trying to find the right protocol for you and your situation is very important, LLMD’s they have a lot of experience with this very often complicated disease.. My Literate was also very good at reinforcing the the idea that Chronic Lyme is a real disease and I have a big task ahead of me, she never said I would be completely cured but only said as time goes on I could get better from the Lyme, then we can go from there after the Lyme is treated and under control..
Dr. Alan MacDonald says that Lyme is hard to diagnose, treat and is capable of relapse, so having someone that has the right background dealing with Lyme patients all day long is your best bet in my opinion.. Unless you catch and treat the Lyme from day one with some antibiotics for at least 3 to 6 weeks you may end up Chronic , getting treating early in the game is so important but because docs are not properly trained or want to use abx needlessly, they very often spin the wheel of fortune or misfortune with your life.. If they guess right you will be ok and tick will be a dud but if they are worng you could end up sick for the rest of your life, just ask the thousands of us online support groups who are now Chronic..Dr. Alans work proves that ticks can have more than just Bb but also many other pathogens up to a dozen co infections have been found in ticks, and now a new virus in NY and Kansas.
some of the protocols i used to get well again.
lymetubes.com/thread/45/tv-protocols-used-get
Soaking Worship
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Lisa Hilton's Doctor referral
whatislyme.com/llmd-finder/
Facebook groups, state by state.
whatislyme.com/websites-and-support-groups-by-state/