Hello, I am trying to get some insight into my symptoms to see if Lyme is possible. I have gotten one lab test done that was neg but I understand that it is a clinical diagnosis. I also get chronic sinus infections that get treated with short courses of antibiotics which I read could affect a test if taken near the time you got lyme?
I'll try to keep this short- the main symptoms that I struggle with: -left side numbness, tingles, twitches, and loss of fine motor skills(face down to toes) -Sharp stabbing pain in the heart area(EKG, echo, normal) -Constant tiredness (diagnosed with CFS) -Lessened mental function(memory, concentration) -Constant headache -irritability, depression (hereditary, may not be related) -Extreme unexplained/diagnosed digestive problems -had bell's palsey before (may not be related linked to mono) -Was tested for lupus, ALS, and MS -Multiple unexplained miscarriages -Was diagnosed years ago with ringworm that did not get better with antifungal meds and just got bigger and eventually disappeared. Years later I saw pics of EM and realized that my "ringworm" looked suspiciously like EM
Those are the major ones, there are several minor ones but I'm trying to be brief.
While I know all those symptoms may be indicative of Lyme, the part that I am not sure of is the intensity that some of the symptoms came on (the left side stuff and heart pain) and the level has not seeme to change. I have grown accustomed to a lot of it and it's the occasional fall/stumble, chomp of my left cheek/tongue, or the strange color changes that happen in my skin if I don't move that remind me that it is still very much there. Occasionally not being able to use my left side as much frustrates me (used to be ambidextrous) and the brain fog is def bothersome. And the heart pain. Ok so I'm used to it sort of but it still sucks.
I was run through a gambit of tests including a spinal tap, MRI and nerve sensitivity tests and I was told they were all normal. I got diagnosed with Raynauds phenomenon becasue of the color change and all other symptoms ignored.
I guess my question is, would it have gone on this long without getting worse? Left side incident happened almost 3 years ago and does not seem to have gotten worse or better.
Am I just waiting for the next thing to strike?
Anybody familiar with VA healthcare? I'm a disabled vet hoping to get referred out. Also, I'm in FL right now.
Any help is appreciated
Posted by BoxerMom (Member # 25251) on :
All of your symptoms are highly indicative of Lyme. Many patients start with a "ringworm" type rash and diagnosis.
Yes, symptoms can stabilize. Don't be fooled. Your body is getting sicker even if your symptoms feel the same.
I have no experience with the VA.
Go to the "seeking a doctor" section, and post your town or area in FL. You should get some recommendations for Lyme doctors.
Posted by TerryK (Member # 8552) on :
Your symptoms could be related to lyme and/or co-infections. I was diagnosed with CFS and fibromyalgia before finding out it was Lyme disease. Same thing for many others here.
I am familiar with the VA system as my husband is a disabled vet also. He does not have lymes but, i am on here because of my sister and her probable LD.
I don't know your percentage of disability my husband is 100 percent and has Medicare because of his Social Security disability(but, also because of his age now). He also has Tricare for Life as the Navy(he was a Marine) medically retired him back in 1972.
So, whenever we can't seem to get the appropriate care for him at the VA we fall back on his Medicare and Tricare. I am hoping that you also may have some additional coverage or that you have a good primary care doctor at the VA facility that you go to. We also live in Florida. I am assuming that the VA still does the fee basis(referring out). Remember, at the VA that you can go to a patient advocate and social worker if you are having problems with trying to get help with the LD. But, my experience with the VA since I have been married to my husband has been good and bad. I just recently left the VA system (Tricare Prime) and am going to outside doctors(which fortunately I can do)because I could not get my primary care doctor or my gynecologist to get a authorization for a breast ultrasound and mri because of my family history (my sister) of recent breast cancer. I was going on the advice of my sister's surgeon to get the mri and ultrasound in additon to a mammogram and they both thought it was overkill. But, on the other hand I had my gallbladder out at a VA hospital and my surgeon was the greatest...
Just don't give up and be persistent most of the time it pay's off....Good Luck!!! I will be thinking of you as the VA can be very frustrating at times....
Posted by littlebit27 (Member # 24477) on :
There is a good LLMD in FL-but you would have to pay out of pocket. Visits can get to be pretty expensive.
I think your symptoms sound a lot like Lyme Disease as well. Better get to a LLMD fast-because it really only gets worse.
Posted by LightAtTheEnd (Member # 24065) on :
Most LLMDs do not take any insurance, and you have to pay them out of pocket anyway. If you can't get the referral you want, you can just find your own LLMD and make your own appointment.
If you post under "Seeking a Doctor" (different folder on the main forum page), someone will send you information about LLMDs in your region.
Posted by dmc (Member # 5102) on :
the VA was terrible to me regarding lyme - tick diseases. Wasted 3 yrs in that system...get to a llmd.
Once I had proper test by an outside llmd and was positive, the VA wouldn't treat unless went through their neuros...I don't even bother using the VA for ANY care now.
Posted by Dekrator48 (Member # 18239) on :
I agree that it sounds like Lyme.
Also the coinfections Babesia, Bartonella, Ehrlichia,etc must be considered.