posted
Hello, First time posting. I am a 35 year old formerly healthy male from new jersey. Avid surfer and triathlete
I have an appointment to see an LLMD on tuesday but am hesitant because of cost. I do NOT know if I have lyme but suspect its a possiblilty.
My lyme test to date are as follows
March 2010 Lyme Disease Ab, Quant, IGM 1.27 - HIGH Positive
Lyme Ab/Western Blot Reflex <.91 - Negative
Lyme IGG western Blot - Igg P41 ab - Present ** So test was negative
Lyme IgM Western Blot - IgM P39 ab - Present ** Test Negative
Lyme test 10/11/10
Lyme IGG/IGM - 0.96 - Equivocal
Lyme IgM western Blot - Band 39 KD - High-reactive ** negative test
I really dont want to be treated for something I dont have.
I did live at the beach in New Jersey wih 2 dogs and have pulled countless ticks off of me in the last 10 years, but can only remember one being engourged about 3 1/2 years ago.
about 6 months later I started to notice shortness of breath on my moring runs, but it was transient so I ignored it.
about 6 months after that during an extremely stressfultime in my life I developed a rash on my head afetr surfing one day that caused all the lymph nodes in my neck, scalp and clavicle to get big. DR told me it was an ear infection and sent me on my way. Needless to say this was the begining of my long road!
I continued to have headaches in the area where the rash was despite it being gone??? I also started to developed horribly painful eye's behind the eye that would get extremely dry and caused me to use eye drops for the first time in my life??? also extremely stiff neck and feelings of being disconected??
I then also started to have digestion problems the would alternate about every 4 days.
It continued this way for about 5 months then after coming home from a business trip I was in a class and While feeling not well and cold and clamy I started to experience what felt like electric shocks on the left side of my head and I also felt as if the building was rocking.
went to er and was told sinus infection, beleived them went on my way.
Took 7 day zpak - felt GREAT!! but symptoms came back after a for days. then took 14 days biacin felt good for about the first 10 days, then took avalox for 14 days, felt like I was having seizures while laying in bed by the 2nd day.
Finally doc told me I neede nuerologist
as time went on I was just dealing with these electric like shocks in head. some days I would have one abd some days 20. I also started to feel like I had springs in my head. when I would walk my dogs in the morning I would be in such a fog and litteraly feel vibration,or so it felt around my brain.
as months went by sysmptoms wax and wayne. Some days my neck and jaw just lock up on me and then 2 hours later I am suddenly fine, my anxiety and panic attacks are through the roof, I have been having recurent abdominal pain, rib pain, armpit pain. Horrible heart palpitations, been on monitor for over 45 days! near syncope episodes that make me feel as if I am blacking out.
Then there are days where I feel 95% and jog 5 miles while I question if this is all in my head as I was very stressed when it started and I have a history of anxiety.
This has been going on for over 2 years, have been tested for everyting from hep a,b,c , HIV, Syhplis, thyroid you name it.
CT, ultrasound and mri of every part of my body.
I dont know what to think. Dr's at very prominent philidelphia hospitals tell me I do not have lyme that all the conspiricy stuff is not true.
Is this all in my head?? If not why am I ablt to still keep in shape by running some days??
Thanks in advanced
Posts: 29 | From South Jersey | Registered: Nov 2010
| IP: Logged |
posted
Classic story. Not in your head, unless you consider having bacteria there counts. Not stress. You have already done a differential diagnosis with everything considered except lyme. The people you are seeing don't know anything about tickborne diseases.
Lyme symptoms wax and wane. This is one of the things that should tip off a good doc. Also the fact that symptoms are multi-system.
Looks to me like you had a positive IgM test. Although testing does not catch all cases, you lucked out. You have lyme, and it needs to be treated. The longer you wait, the longer it takes for treatment.
Go to that appt. on Tuesday. Yes, it can be expensive, but if you have out of network benefits, part of the cost may be reimbursed by your insurance co.
Good luck. Too bad you have had your time and money wasted by your previous docs.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
my IgM only had one positive band. But both times it was the same IgM 39 band??
Posts: 29 | From South Jersey | Registered: Nov 2010
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I agree, classic.
The shortness of breath was one of my first symptoms and came and went as well. I was tested for asthma, and they determined I was hyperventilating. It was babesia. So were the heart palpitations.
The reaction to Avelox sounds like bartonella because Avelox hits bart.
If you can keep exercising, that is good, and necessary, keep it up as you are able.
Be sure to search KPU on the forum. One of the symptoms is anxiety and KPU can be a reason why some develop chronic Lyme and others don't. Dr. K, a prominent LLMD, has said his experience shows 80% of chronic Lyme patients have KPU. It's new on the Lyme scene, so most LLMD's don't test for it.
Since your symptoms worsened under stress, I'm thinking KPU treatment could possibly be a help for you .... but I'm not a doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by surfnjm: my IgM only had one positive band. But both times it was the same IgM 39 band??
You're lucky anything at all showed up. Most Lyme testing isn't very accurate. Your LLMD will likely run an IGeneX Western Blot. All they do is Lyme testing. They're good at it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
well thank you for your input. It has been a trying 3 years. Social life is almost completely gone as I never know how I am gonna feel from one hour to the next. and the nuerological problems just seem to be getting worse, visual disturbances, derealization, etc...
I just want my life back and after reading some post I fear that this may never be the case
Posts: 29 | From South Jersey | Registered: Nov 2010
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm completely well now. You can get your life back!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Thanks I am gonna go! I guess after so many discouraging doctors visits where I am told its anxiety or depression. I am just tired of the run around
Posts: 29 | From South Jersey | Registered: Nov 2010
| IP: Logged |
posted
Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.***
PS.. Doctors at major hospitals have no clue what they're talking about when it comes to Lyme disease.
***From this link: Dr C's Western Blot explanation:
posted
ditto me, surfnjm. could have written your story, including triathlons and hitting all the major philly hospitals to be told that you don't have lyme. shortness of breath was one of my first symptoms ~ 10 years ago, as well.
mine was indeed lyme and coinfections, and i'm thrilled to say that i am so so much better after two years of treatment. please go see the LLMD!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
| IP: Logged |
posted
There is a pretty bad "lyme" dr. in South Jersey. PM me, Ill tell ya who he is. Don't get roped in w/ him, he won't do jack----. I would get straight to a Lyme Doc. I wasted 1/2 a year on different docs with one goose chase after another. Im sure you got a list already. Yahoo groups has a lot of Lyme groups that can also point you in the right direction. The answer is yes, you need a LLMD. I didnt want to hear that and wound up wasting time and $. It will be expensive either way, but just get to the right Doc is the first step, good luck.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic