posted
Hi. I am new to the group and thought I would tell everyone a little about my story and myself. My name is Mike, I'm 28 and I live in Central NJ.
I have been living on my own since the age of 22 due to my father passing away and some other disturbing family events. I have a business that I started a few years prior to moving out which kept me busy and allowed me to pay my bills.
Through the years, the business has grown and changed and I am very thankful to be doing what I enjoy. However, in the past year, I was faced with something that caused me to slow down and eventually stop business.
It all began in August 2007. I got into a bad vehicle accident involving someone that ran a red light. The situation stressed me out as nothing was going right as far as the insurance claim.
About 2 weeks later, I noticed that my neck was slightly stiff and I figured it had to do with the accident since there was quite a bit of impact.
On top of all of this, the love of my life left me because I was depressed. I went to see a family doctor, who happens to be a LLMD, around Labor Day 2007 for a checkup and my physical checked out fine.
The doctor wanted to do blood work, but I was very nervous and still shaken up from the accident, so I thought it was best to hold off for the time being.
I was about 50 pounds overweight at the time. I told the doctor that I've been through a lot and requested an antidepressant, as the love of my life told me I should seek help and to do it for her.
She also told me that I should have health insurance, which I got immediately. I figured it was the accident causing the depression as that whole situation really brought me down.
I started seeing a psychiatrist for therapy and the family doctor gave me Wellbutrin. The first night I took the Wellbutrin, I started shaking uncontrollably around 4am, which woke me up out of bed.
The shaking lasted approximately 30 minutes and then it stopped. I never had anything like that happen to me and it was rather frightening being that I live on my own.
I took another pill the following night and had the exact same shaking episode again around the same time in the middle of the night. I decided to call the doctor immediately and asked what to do as I figured it was some sort of allergic reaction. I was told to discontinue it.
The following day I had an unbelievable pounding headache, which lasted a good 2 weeks but it was mainly noticeable while standing or sitting up. It was not so bad when I was lying down.
After reading up on the Wellbutrin, I noticed it has a half-life, which can last for weeks, so I figured it would take time before the headache goes away.
My friends said you are just stressed about the breakup so I took some stress relief tablets. I was told that would definitely get rid of the headache, however it did not subside.
Since the headache did not subside, I went to my primary doctor who takes my insurance for another opinion. I told him I don't feel right, I feel lightheaded and ``unreal'' and he looked at me like I am crazy. He said you have a lot of anxiety.
From that point on, the symptoms started to change regularly. The next thing I remember was very bad constipation. Being regular my whole life, I never had any problems with this and it was a bit frustrating.
I was told to try some natural laxatives, which helped slightly, but the problem persisted after I stopped them. After seeing a gastro specialist, I was once again told its all anxiety and in my head, which is causing irregular bowel syndrome.
The doctor refused to do any further testing on me. Since these doctors did not want to listen, I went back to the family doctor and requested the blood work.
I had the blood work done on December 20th by LabCorp. This was the first time I had blood work done in a good 15 years, as I was never sick or needed to see a doctor before.
After the blood was taken, I felt extremely weak and fatigue and sweat was dripping from my forehead. I drank a few cups of water and felt decent enough to drive back home. I was glad it was over and I was anxious to get the results.
I was hoping for some definitive results but I was not that fortunate. I was told that I have to get the blood work done again as some strands came up positive for Lyme.
On the IgG WG I had 66+ and on the IgM WB I had 23+. The doctor also noted that my calcium count was a bit high, but it shouldn't be anything to worry about and it would be checked again at a later time. Everything else checked out perfect on the blood work and I was told ``if its not Lyme, its nothing''.
I had the blood work redone on December 27th and it was sent to Igenex. I was told it would take a few weeks to get the results. During this time, the headache came back and the lightheaded ``unreal'' feeling came back as well.
The next thing I noticed was muscle twitching in my arms and legs and my face became pale. On certain days, I was barely able to do a few hours of work without getting tired and I knew something was not right.
I wound up in the emergency room on New Years Eve due to a major anxiety attack, very bad constipation, loss of appetite and shaking. I remember getting wheeled back from the x-ray room about 10 minutes after the ball dropped.
They said you are very backed up, but there were no blockages found. I was told to take Miralax and follow up with my primary or family doctor in a couple of days if it doesn't get better. The hospitals conclusion was it was all anxiety and related to the breakup.
I got the results from Igenex on January 14th. On the IgG I had 31 IND, 41+, 58++ and 66+. On the IgM I had 23-25 IND.
The LLMD said it shows negative but suggestive and they will keep an eye on me. The doctor asked how I was doing and I mentioned all of the new symptoms that started while I was waiting for the results.
I was told to come in immediately the next day and I started on 30 days of Doryx 100 mg, 2X a day on January 20th. I was told to make an appointment to come back before I run out of the medication.
When I started the Doryx, I started to develop new symptoms right away and herx, which I was told would happen, but I had no idea to what extent. Some days were better than others but I toughed it out.
During the herxing, I was still unsure of what was going on. I developed a loss of appetite again and I was very concerned that I have something else so I decided to get a few other opinions from other doctors, including an infection disease specialist, another gastro specialist and a neurologist for the muscle twitching.
The infection disease specialist told me to stop taking the Doryx because I do not need it. I asked her why should I stop it if it's doing what the LLMD told me it would and she said that's all in my head as well. She also had some choice words about the LLMD that did not touch me the right way.
The gastro specialist suggested that I get an endoscopy done and scheduled it 2 weeks later. The neurologist wanted to do an EMG test, which was scheduled about 3 weeks later.
Around the 3rd week of taking the Doryx, I felt well again and figured it was over. I just had some muscle twitching from time to time but everything else seemed to have gone away. I even canceled the endoscopy and EMG appointments that I had.
I decided to wait a week after I ran out of Doryx and determine what to do, which was a mistake. I went back to the LLMD and I mentioned that I was doing much better, however, the muscles are still twitching but not as bad as when it started.
The LLMD told me to start 30 days of Bactrim DS along with Artemisinin for what was believed to be Babesiosis. Without getting a blood test for Babesiosis, I was very skeptical of the diagnosis but I listened and took the medicine.
After taking the Bactrim and Artemisinin for less than a week, I developed major symptoms in my stomach and the constipation returned. I also broke out with 102� fever one day and I was told to stop the antibiotics.
I decided to reschedule the endoscopy and I also requested a colonoscopy to rule out any other complications, which required me to be off all antibiotics.
The endoscopy showed I had chronic gastritis, chronic esophagitis and duodenal mucosa with villous capillary hyperemia. The biopsy's taken all came back negative.
The colonoscopy came back ok with 1 polyp removed, which was negative in the biopsy results. The whole month of March I was not taking any antibiotics because I had these tests scheduled.
I decided to see another LLMD for a second opinion around the last week in March. The doctor was very friendly, spent a good hour with me while I told my story and symptoms.
I had a Babesiosis test sent to Igenex and a CD57 test sent to Labcorp. My CD57 test came back with a 34, so I knew something was wrong. The Babesiosis test came back negative.
I was told that it would be discussed on my next visit. A few days later, I developed shooting pains in my stomach near my heart and shortness of breath when laying down which brought me to the ER again for a full contrast CAT scan, which came back negative.
I then went back to the first LLMD to apologize and I immediately started taking the Bactrim again as directed. There was just so much drama and controversy; I didn't know what to do or who to believe, not realizing that my brain was fried.
I asked about the Babesiosis test and I was told there are over a dozen types of it and Igenex only checks for a couple.
On my next visit with the 2nd LLMD and after sharing all the blood work, the doctor did not believe I had Lyme because I did not have strand 39 present on any of my tests. I left with a bill stating I had an unspecified tick borne disease.
I notified the doctor that this was a second opinion, I already began Bactrim again as per the other doctor's request and I am already improving. When I mentioned that I will be continuing to see the other LLMD who is more local, I was told that I am in good hands and to feel free to call if I need anything.
I have stuck with this doctor since and I am happy to say I am improving very well. I am being treated for Lyme, Babesiosis and Bartonella as I had key symptoms present for every one.
Since April, I started on Bactrim DS 2 X a day for 1 month by itself. The doctor added Rifampin 150mg 2 X a day for the next 2 months with the Bactrim.
I began Artemisinin 100 mg 2 X a day while on the Bactrim and Rifampin on the 2nd month. When I added the Rifampin, I had a herx within about 2 days.
It took a few weeks after I started the Artemisinin, but that caused a major herx as well. I recall nearly trashing my house one day and a few hours later I was perfectly fine.
This month I stopped the Bactrim and Rifampin and started on Flagyl 250 mg 3 X a day and I am continuing the Artemisinin.
Between the LLMD and I, we have established that I have had it for a very long time and it was lingering in my system for many years. It was amazing at all the things I remembered throughout my childhood after looking at the book of symptoms.
I remember having a few clusters of floating dots while looking at the sky on certain days around the age of 10. I never thought anything of it and I thought they were pretty cool to follow and look at back then.
I also remember having lots of phlegm in my throat when laying down causing me to clear my throat regularly between the ages of 8 and 16. This was thought to be a nervous habit.
The symptom that stands out the most in my recent years was unusual depression and mood swings with no motivation on certain days with no pattern, which was thought to be due to working too much and family problems.
I also remember decreased hearing and ringing in the ears from time to time. My hearing was never bad, I figured I was getting older and I didn't think anything of it since I felt fine otherwise.
After getting ear testing done and a scope up my nose, the ENT specialist found that my Eustachian tubes were infected, swollen and clogged which was believed to be allergies.
Since the sprays he gave me for 45 days did not help, he recommended that I get temporary tubes installed for some relief. However, the doctor that performs this procedure did a pressure test and told me my hearing is not bad enough to get the tubes and getting them can cause more complications down the road in my life.
My LLMD is very sure the Lyme is in the tubes causing all the problems so I am just toughing it out for now.
All said and done, going back to November 2007, I had 50+ symptoms that came and went with no pattern or warning. I am now down to about a half dozen symptoms.
The muscle twitching is still present, but improving on a regular basis. My short-term memory is not 100%, but improving.
The ``unreal'' lightheaded feeling still exists; some days are better than others. I found some remedies that help with this and I continue to use them.
My ears still feel clogged and I sometimes hear ringing from time to time. I also have strange noises in the ears when I open and close my jaw on certain days.
I have a distinct pattern of floaters that I see regularly in 1 eye and my other eye has slightly blurry vision. I still have fatigue; some days are better than others.
I lost nearly 60 lbs since it all started and I am thankful that I had it to lose. I will never know exactly when I got bit or when I got it but I know for sure that I had it lingering in me and my body was fighting it off for quite some time.
My LLMD assured me I will be making a full recovery and I will feel better than I ever did. The 2 people that cared about me the most throughout my life, my father and grandmother, are no longer around.
I believe in my heart that they now know what I am battling and their spirits are helping me to stay positive through the recovery process. Despite having nearly no family left, I always find a way to remain positive and bounce back from a negative situation.
A special thanks to everyone that has given me support and help throughout my worst times.
Although the LLMD told me that ``I will be needing help'' to get me through this, I have toughed it out on my own for the most part. There were days that I knew I shouldn't be driving, but I stayed focused and kept thinking positive thoughts, which really helped me.
The love of my life has not contacted me since this happened and I am ok with that because I do not want her to see me until I fully recover. I truly believe that she will be back in my life once I reach that point and the story will have a happy ending.
I hope that this story can bring some light to those that are suffering. Things do get better with the proper treatment and positive thinking. If anyone has any questions or comments, feel free to send me a message.
I'm so happy you got the help you needed and you are on the road to recovery! YEAH!
Thank you for sharing your story here. My problems started about the same time as yours did. And like you, I have probably had it for many years, 10-12.
I am still in the go around and around with the doctors - but I will see a LLMD for the first time next week.
I would say, from all the reading I have done hereand elsewhere, your case is typical Lyme and co-infedtions.
I am so happy that you are getting the right treatment and responding.
May you return to 100% health very soon and may you also have the "Love of your Life" once again. (even if it turns out to be someone else)
Because it is all much easier with our mate to support us!
At the very least - you have and will always have your two Gardian Angels looking after you!
Best Wishes and Blessings to you, Peedie
Posts: 641 | From So. CA | Registered: May 2008
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posted
Mike, Unfortunately, your story sounds all too familiar. I'm sorry that you have had to go through this. I know how it is to not have any people to count on to help you.
I'm sure that you are right in that your father and grandmother are helping you from the other side.
Good luck with everything. Keep the positive attitude-it can only help. As far as the love of your life goes, maybe you should let her know what is going on with you, and give her a chance to stand by you. If she doesn't, then perhaps she is not the love of your life afterall?
Posts: 418 | From NJ | Registered: Sep 2007
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bettyg
Unregistered
posted
hi mike, and welcome to the board.
A very moving story you wrote; thanks for sharing it all ... all so familiar with everyone here.
i agree with amk; share what is going on with you with your former girlfriend. see how she reacts and will love you in spite of everything.
my husband of almost 34 yrs. has NEVER known me well!! he married me for: in SICKNESS and in health; for richness or poor" !!
yes, i'm sure your dad and grandma are beside you daily! have you found any pennies; that's them tossing them to you!!
you have just joined our LYME FAMILY; we're happy to help you during good, bad times, and ranting times.
thanks so much for breaking up your story so we all can read it!! best wishes on your road to recovery!
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