So, I'm a new member and I guess this might actually be a place I can vent my fear and rage and utter confusion with this disease and the absolute joke that is 'modern medicine'. First off a little of my back story on how I got lyme (if that even is what I really have) I contracted it sexually from unprotected oral sex. Never had a tick exposure, not once, ever. After the incident was plauged with rashes. Which progressed to GI discomfort, sleep trouble, and pounding heartbeats after exertion. Took years to develop. Then the chest pain started, severe chest pressure massive heart skips and struggling to even beat(this persists 24/7 for 2+ years now)then my joints went, then I started having stroke symptoms went through $150,000 worth of medical tests to find absolutely nothing. Doctors even laughed at me told me I was insane and it was in my head. Tested for Lyme multiple times all negative. Now this Lil magic igenex test pops up and says I have Lyme soooooo yay I finally have the answer!! Or do I? Nine months of treatment and literally nothing maybe some energy back but the massive chest paint persits all day every day and I guess I don't understand how there not one ounce of quantifiable data on why.... There has to be something.when I ask my LLD he just shrugs and says its from the Lyme but can't tell me what specifically is happening. Also have developed every symptom of full blown AIDS(oral thrush, chest rash, muscle aches, genital rashes, constant cough) but guess what tested multiple times all negative!! My main point I guess is how can I trust ANY medical "professional" or any test or blood work, or anything. I don't even know what I really have and I'm going literally insane. As far as I'm concerned my life is over I have over 7 methods of suicide set aside for when its time. Everything I read from Lyme people is just watching them spiral into madness and never get better I don't think that can be me. I know this is stitched together maybe even unreadable its late and I'm exhausted.. Just thought maybe once I could vent to people who understand..
PLEASE DO NOT GIVE UP. THE GOVERMENT FINALLY AWOKE UP AND ARE STARTING RESEARCH PROGRAMS
MOST MD KNOW NOTHING ABOUT LYME, THERE WILL NOW BE MONIES TO EDUCATE MDS. I WOULD THINK YOU SHOULD SEE A CARDIOLOGIST. I DON'T LIKE THE SOUNDS OF YOUR CARDIAC PROBLEMS. I HAD A HEART BLOCK AND CARDIAC ARREST ,THAT IS HOW I WAS DIAGNOSED
I'M NOT TELLING YOU WHAT TO DO BUT I'M CONCERNED
GOD BLESS,
DEBBIE B
First, I would like to welcome you to our community and thank you for joining us. :-)
I have some concerns about the information that you posted. First, Lyme is contracted from ticks and at present, there is no evidence that it can be passed from person to person via sexual contact. Second, the Igenex test alone is NOT able to determine whether or not a person has Lyme. It isn't even approved by the FDA for diagnosis of anything at all.
Short of starting anew with a different provider at a good teaching center or center for excellence, I am not sure what other advice to offer. After months of treatment without improvement, it is time to RUN from that supposed LLMD. You aren't supposed to get worse before getting better with any treatment. Any treatmeent that doesn't help in that amount of time isn't going to help.
I am so sorry that you're miserable, and wish I had answers for you.
There are any number of diseases STD or not that can cause the symptoms you are experiencing. One of the most well studied is Lyme There is only one way for itto be transmitted and that is with a larvae who has been attached a min, of 3 days. What is being studied NOW aside fro voodoo folks is what portion of the immune system is damaged by active lyme. We know that it is broken down proteins left by the spirochetes that have died by either immune system action or antibiotic treatment. The two addition western Blot bands done on an Igennex test are not lyme specific, they only confirm the presence of some kind of antibody.
What is critical at this point is to manage your systems. While it we be great to point your finger at something and say lets cure it with XYZ, that just doesn't happen. We can treat depression (a huge symptom of autoimmune dosorders) We can treat cardiac disorders and on down the line. That's where we start. Unfortunatly that LLMD or an ND has absolutely no ability to that.
You are likely to young to remember Polio, but it was a big thing when I was kid. I had friends recover without incident and I had friends who to this day almost 60 years later still suffering limps damaged limbs etc. None of them have polio. But the damage the disease did remains. When your immune system is damaged for what ever reason. It recovers some time slowly, sometimes quickly, and rarely not at all BUT what we can do is compensate for all those short falls. That's what good medicine does. BAD medicine offers false cures and false hope.
I've been to 4 cardiologists and 3 GI doctors they all tell me nothings wrong... How is that possible ?which is why I used the term black magic. Every waking moment of my life is chest pain and massisve heart palpitations yet no test or study can find anything conclusive.... And tj if you think the only way to get Lyme is having a tick attached for three days sorry but your nuts bud!! Grew up always checking for ticks NEVER had exposure. Repeat neverrrr had a tick. Whatever I have is 100% sexually transmitted yet I test negative for everything. Any test for anything they do comes back negative. Do you know what that does to your mind when every inch of your body is falling apart and they can't find anything. Honestly don't know how much longer I can live like this... I do it at this point for family and friends and that's about it
I understand all of that, we are all patients here. But yes it takes several days for a tick to transmit lyme and then if it is in the larvae stage. There is NO way Lyme can be transmitted unless without a blood transfer. Heart palpitations and chest pain are generally not related to heart conditions which is probably why the cardiologists cleared you. They can't fix what isn't broke. The same situation is present with the gut. GI docs have a very narrow scope.
So who have you seen in addition to those two specialties? There is a number of autoimmune conditions that can explain your condition many of them can come from an infection that is sexually transmitted (or a simple cold) Sadly Most autoimmune conditions don't have a "test" We end up there when we get negative tests for things we do have tests for. Often they start treading for Fibromyalgia chronic fatigue etc As they start getting results (or not) they move one direction or another. Its a long drawn out process progress is slow. but there is progress. The symptoms are real, but that doesn't mean they are connected to a "disease" that can be treated. That's why most of these things are "syndromes" simply a collection of similar symptoms.
I've seen every specialist there is rhumetokogy, endocrine, GI, cardio, infectious disease, pulmonary, Lyme docs, osteo and they can't find anything my life is completely ruined and I can't even have an explanation..
I am also new to this site. . I keep telling myself this is not the worst disease to have, it could be worse and I will deal with it.
My first bite was in the late sixties. I always liked to walk in the woods with my dogs. I also always lived in a wooded area, so no escape. I also had a tick in winter crawling on my neck. In my case now the symptoms keep coming back without being bitten. And the symptoms seem to be getting worse. Constant dizziness, and the med for it don't seem to work. I have to keep going as I have 2 dogs that need to be walked since I live in a retirement community.
I have time when I feel just ok so I can do my shopping and needed work around the house. I have no appetite but I know I. have to eat .I have 3 weeks left on meclizine, I guess the Doctor will send me for another blood test and give me different antibiotic . One does not look sick and people think there is nothing wrong . And who wants to complain ?