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Hello all:

This will be long and I apologize for that but I need your help.

I know I have been on this board for about a month now and have not really shared my story but now I need all your advice. As many of you know I am waiting for my results from Igenex which my Dr. has had since yesterday, but they have not called me. I have a feeling they will be negative since every other test that I have had in this odyssey excpet my eeg (not the test you want to be abnormal) has been negative. If it turns out my results are positive I will add my story to the update thread, if they are negative I know this thread will go off into the land of misplaced threads.

My story starts when I was a kid. My mom is from the Boston area so we used to travel to the Northeast every year and I grew up in Minnesota. Two lyme hot spots. As a child I had this rash -big red circle like blotches all over my legs and torso with no known cause. This was in the late 70's and although lyme was around noone had "discovered" it yet. I also had episodes as a child of high fevers to the point of hallucinating. This happened on two occasions that I can remember and noone else in my family came down with this so I don't think it was the flu. After these episodes I was healthy as a horse no problems at all until about 3 years ago. I had my two boys no problem and then had a series of miscarriages. Two bad ones that required d&c's and two early miscarriages. I could tell that something had changed in my body but I thought it was hormonal. I was very tired, and my periods had gotten shorter and very heavy. All my hormone levels were tested and everything was normal. After the last miscarriage (which didn't happen until 14 weeks and I knew that something was wrong the whole time) They did genetic testing on the baby which was a normal baby boy, as well as genetic tests on my husband and I along with a battery of all these other tests-all normal.

Shortly after this I was diagnosed with borderline high blood pressure, my back starting aching horribly, I was fatigued, I had angina and I felt like I had a constant lump in my throat. My Dr. did and x-ray of my spine and said it looked perfectly normal, I had a stress test-also normal, and un upper GI endoscopy-normal. My Dr. told me this was all stress related and tried to get me to take an antidepressant. I knew I was not stressed, I was not depressed and so I declined.

Fast forward maybe a year and my right foot starts bothering me. By the end of the day I could hardly walk on it and I thought it was a bunion from wearing heels. I also was having a lot of edema especially in my feet, legs and hands. I had about 30 pounds of "baby weight" to lose even though my "baby" was 3 so I decided to get rid of it once and for all. Around this time I had an episode where I got bit by something on my neck and developed swollen glands in the back of my head. I felt Fluish-did not have a fever though and I was
achy. I also noticed at this time that my urine was very dark. I had it tested and there was no blood in my urine, but the Dr. I saw said that the color did show up as brown and told me to drink more water. I was already drinking about 8-10 glasses of water a day.

Well, I lost the weight but I still had the swelling in my feet and hands. Everyone was telling my how great it was and how I must have so much energy, but the thing was I was feeling worse than ever.

Now we are up to May of this year. I had been taking Minocin ( a tetracycline antibiotic) every month to help with breakouts. In April and May I got a yeast infection after taking the Minocin so I decided to stop taking it.
Shortly after I stopped I noticed a rash on my lower left leg. Shortly after this I noticed that my vision was off-colors were too bright everything had a glare to it and I felt like my depth perception was off. I started having problems with my memory-short term stuff was just gone. I remember taking muffins out of the oven one morning, walking up the stairs, and then not remebering if I had taken the muffins out. I started to occasionally stutter and have problems finding words. I could not drink any alchohol and I noticed that my breasts started to look like they did when I was nursing, which I though was weird, but maybe a hormone issue. This went on all summer, just kind of vaguely not feeling well until August 17th.

I started the day off feeling nauseated and dizzy which was a constant until about 1:30 in the afternoon when I started having chest pain as I was driving on the freeway. I wasn't concerned, I just thought it was heartburn when all of a sudden I felt like I was going to pass out, tunnel vision and my pulse went way up. I was no where near an off-ramp and was on a major interstate so I called 911. When they got me in the ambulance my BP was 200 over 110 and my pulse was 110. They thought heart attack. I was checked out at the hospital and everything was normal, although they did a chest x-ray that showed my spine and I was told that I had arthritis in my neck and a slight heart murmur. I had never had either of these before. Their final conclusion was that I had had a panic attack. I had another one of these episodes 4 days later at Target with my kids, and another one Driving again 5 days after that, but this time I couldn't think clearly and I felt like I was in a fog. This time they did a CT scan-normal and ran a bunch of bloodwork-all normal. After this these episodes of feeling like I was going to pass out were happening on a daily or every other day basis. I would actually get to the point where I would "see stars" , but I never did pass out. I was afraid to be alone with my boys and I know this was scaring them, especially my older son who is only 7. I had to make sure he knew how to dial 911 in case Mommy passed out.

I thought maybe these were balance issues so I went to an ENT who diagnosed my with Vertigo and something called peripheral vestibular damage. I went through major balance testing to rule out Menieres and went through phsyical therapy to correct the vertigo and vestibular issues. But guess what? I felt no better.

So now we're off the see the neurologist who thinks what I have is status migranosus- a constant migraine that my body can't break and he puts me on steroids. After the steroids, which didn't help I felt worse than ever. MRI's were normal. I wore a holter monitor for my heart which was normal excpet I had these episodes of skipped heartbeats. I looked run down and my skin color was kind of blue'ish especially in my hands and feet and I had a slight Bell's Palsy on the right side of my face which I noticed along with my Husband and a Chiropractor that I went to to see if he could "fix" me. Around this time one of my friends calls to ask me if I have ever been tested for lyme disease. I hadn't so I started to research the symptoms. I was shocked to see that I had almost every single symtpom on these lists. I won't go into them all since I know you all know them inside and out, but I literally had almost every single one and I thought a lot of it was "just me." I hadn't connected it to my recent health problems.

So now I start my lyme odyssey and I am sure you all know this part well. Every test by all traditional labs are negative. Antibiotics which I started are doing really weird things to me, most notably the tremors which started 6 days into to Doxy and come like every four weeks, other things that I never had before abx are the burning sensations in my arms, legs and butt. The night sweat now are worse, I have more episodes of panic which I have never had before. My feet hurt more than ever, but now it is both of them. My right knee hurts and it was always my left before. My bones make cracking noises going up and down stairs. This is all new since the antibiotics and these things come and go. Some things are getting better, but the neurologic symtpoms and vision issues are not. I felt better before I started taking abx and all the drs. I am seeing are telling me it is because since my tests are normal I must have something other than lyme although none of them can tell me what that something is. One I.D. guy told me I needed a psychiatrist and refused to send my blood to Igenex. He told me that Igenex was not a reputable lab and that it just fed in to the "lyme counterculture".

The neurologist does not think this is MS or ALS, I have even asked them to test me numerous times for syphillis since it is also a spriochete that causes herxheimer reactions even though I have never been promiscuous and have been happily married for almost 11 years. This has just been crazy!!

The only test that was abnormal was my EEG. The neurologist said he saw a slowing of the EEG which could possibly be some type of atypical seizure. I hear that word "atypical" with every "diagnosis" that I get. When I told him that I still think this is lyme he said that lyme would explain what he was seeing on my eeg. BUT-because I test negative on all my lyme tests through quest, they would rather treat me as an aytipical seizure, or an aytipical migraine, or an aytipical meniere's patient rather than entertain the idea that this could be lyme.

I have read that the longer you have lyme the more likely that your body stops making antibodies. If my Igenex tests are negative I don't know what else to do. Since what I have at this point would be neuro-lyme only I.V. abx are going to work and noone will give me I.V.s without a diagnosis.

So there you have it. I know this was long and I am sure I even left some out. If anyone has any thoughts I would appreciate it. I don't know if I can travel since I can't drive myself and we have little ones it would be soooo expensive because we would all have to go.

Please Help...


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