It was the summer of 1993, my husband and i had started working for the National Forest Service up in the Hiawatha National Forest in the upper peninsula of michigan. We had been there for 2 months when a fellow camper noticed a rash on the back of my leg. I really didn't think to much of it because we were out blueberry picking and i figured i was bitten by a fly or bee or something. Besides I felt great.
Then about two to three days later vertigo set in. I had never had anything like this in my life and it scared me . I couldn't stand for about a half hour or so until things stopped spinning. I went to the doctor told her about the rash. She said there had never been a case of lymes in the upper peninsula and let it go at that. I also noticed that the limp-nodes under my arms were swollen up and my knee was having pain in it. After running through a battery of test she wanted me to come back in for a mamma gram. She told me she thought I might have breast cancer. Of course this frazzled my nerves to the end.
In waiting for the mamma gram i kept having break downs. I would just sit down and cry, or get mad over nothing. Mostly I cried. By the time I went back to the doctor, by now it was 3 weeks after my bite. She notice I was very depressed and put me on prozac. the wonder drug,The mamma gram came back fine. but now I was having headaches and sinus problems. I also felt like i was under the flu bug. I had body aches all over the place. My knees were hurting all the time. My fingers and wrist started feeling like they were arthritic. So they put me on pain medication. without it i didn't get out of bed.
I got a sinus infection and was put on antibiotics for two weeks. Suddenly I was starting to feel better. I was glad that was over, at least thats what i thought. It stayed in hiding for a short time and the summer ended we went back down state, (lower michigan) to my home. There the aches and pains started again along with the sinus problems and back to the doctor i went. They told me i had chronic sinusitis. Back on to antibiotics i went, another ten days. I began to feel better. As soon as the antibiotics ended I was sick again. Back to the doctor i would go.
They would put me on a stronger antibiotic for ten days. I would start to feel great until the antibiotics were gone then it was back to square one. I kept telling the doctors, I had seen four different ones by this time. Every time the antibiotics would stop I would go right back to being sick again. I told them all about the tick bite and the rash, They all assured me there were no cases of lymes in michigan. I was still on the prozac and the pain medications and that was the way I remained for several years.
The pain medications would not work half of the time so my husband heard of a clinic in kentucky that had helped people with chronic pain so off we went. They ran me through his array of test and came back with nothing. Told me it was all in my head. I knew what i was feeling wasn't my imagination it was real very real. and very painful. We went back to michigan the doctors gave me higher doses of pain medication and prozac and sent me home.It seemed like i had seen so many different doctors trying to figure out what was wrong that i knew what they were going to ask me and what test they would run.
My husband was frantically searching for anything that would help me. Things would continue to get worse as time went on.I was at the point when I woke up in the morning i was in so much pain, it took everything i had just to get to my recliner in the living room. There i would stay until it was bed time. In the year 2001 we went to a pain clinic in grand rapids michigan. There they checked me for allergies, heavy metals,any kind of toxins. They really gave me a work up. The test all came back negative except for one .......lymes disease.....finally someone had seen it. My husband was in shock! I was relieved that this thing finally had a name. But that was a very bad name.
It was 2002 before they discovered what I had, they started heavy antibiotics but we figured it would just go dormant like it had done before, And because of all the sinus infections i was getting they kept putting me on different kinds of antibiotics that it had built a immunity up to them. So we went with putting my blood through a blue light to kill the thing. They also put oxygen into my blood. It took several weeks but i finally got finished. I believe the thing is dead now,( i hope) but the long term effects so far are : i have knee problems, they are sore and always popping out of socket. My doctor said it acts like arthritic.I have terrible joint pain in my elbows fingers neck and back. I have lost my 20/20 vision. I have ringing in my ears 90 % of the time. I am in constant pain. I wake up with the flu every day. i have memory loss. Like can't remember the name of something. like a doorknob or a robe. some days i laugh at myself, some days i cry.i get headaches. i have a hard time walking because of my knees.
I am still on pain medication and will not let them give me a higher dose. i struggle with as little as i can. I have terrible mood swings. my husband tells me i am a different person now, my personality has changed. I still take prozac everyday. it is very hard to stay positive about things when your in pain all of the time. i went to the dentist last week and they told me i had 15 cavities. I never had any cavities until i was 27, then i had 3 until the last 2 years, they said i am getting cavities where people usually don't get them.. nice huh,....I also now have a handy capped license plate.
The reason my doctor would not treat me for lymes in the beginning was because, there was a lady in michigan that was treated for lymes by her doctor and she did not have it, so she sued him and he lost his practice. It scared every doctor in the michigan. So unless there was documented proof that there was lymes in michigan, no doctor would even discuss the matter. I am now 47 years old and taking it one day at a time. It is really scary when there is no one that can tell me what else to expect from this thing in the next 10 years. Maby it is better not to know.
Last edited by moderator2; 08-15-2008 at 05:25 AM.
Reason: please use paragraphs instead of writing a wall of text
Hi Sherrie, oh my heart feels for you. I know many of us can relate here. I just want to say that in my own opinion you need more treatment. I have been on antibiotics, alternative, ect now for 8 years , trying different protocols. Misdiagnoised for about 15 years before that....
I must say that I no longer have pain in my body. Oh boy my knees were just horrible, and had gotten to the point where I had to be carried and couldn't use my arms. And all of the things you say you are going through. It is just crazy stuff I'l tell you.
In what I know and have learned about having Lyme for so long is you need long term treatment to get the little critters back into remission. I don't feel that any of us will be truly cured. But you can get some quality of life back. But it takes alot of work as you know ...I feel Sherrie that you should get to a Lyme Literate Medical Doctor. That would be the best thing to do. Someone that will not give up on helping you. All of the things you are still experiencing well in my own opinion you are stil being affected by lyme and you need more medical treatment. Living on pain pills, and antidepressants are only a bandage to your problems. You need proper treatment. Just because you have tried this blood treatment that doesn't mean that it worked all the way.
Other things to be tested for to help you get full recovery are for co-infections, Bartonella, Babesia, Mycoplasma, and many of us have Chlamydia Pnumoniae bacteria. (not the sexualy chlamydia)...There are many things ticks carrry. So if you are just being treated for one thing and have other things going you need to be treated for them also or it will be a losing battle. I have also learned that test for many conditions are just not accurate. That is why getting to a LLMD will help, they go on physical findings and not solely on test. You can post a new thread and ask for a LLMD closest to you.
Another thing is having your titer checked for any of the herpe virus family. Such as Epstein Barr, Cytomeglovirus, ect..ect...
I'm amazed and disgusted at how many doctors don't test for lyme disease. I was lucky... the same day I got bit, while I was visiting a friend in Mass, and actually within minutes after being bit, I developed the bulls eye rash...I felt an hot burning/itching feeling and even saw the "trail" of the little tick that bit me. I have extreme sensitivities to bites.. esp spider bites which often give me cellulitis at the drop of a hat. I went to a Allergy specialist that same day as I wasn't sure if it was a spider bite, as it looked "odd" or not. This MD worked out of Mass General in the suburbs and the minute I went in he knew what it was and said that the "trail" was the saliva of the tick after he bit me and walked off. I was put on Doxy right away.. then retested 3 weeks later and clear. WHen I hear of years going by and Md after Md... not catching this I'm disgusted. Even if the rash doesn't show up... the symptoms should lead these guys to Lyme. This pain and suffering people are going through on these boards really makes me mad.
Hi Sherrie, I have been thinking about your post. And about the blood cleaning. And you are still having problems. Do you know that the bacteria's imbed themselves in your tissue, (skin), muscles, "bones"?? So I am just picking my brain here. ....if the bacteria is in these places and you have had oxygen ran through your blood or how ever they do it....Wouldn't you think that if you are still having problems, then the bacteria is still in the skin, muscle, bone, ect....And most likely back into the blood stream ??
I just haven't heard anyone doing this before. I am curious is all.
one of the reasons doctors don't just test for Lyme disease all of the time is because a minority of patients have the classic presentation you did with the bull's eye rash (i.e. erythema migrans). I see that one doctor did miss it, and that sucks, but in areas where Lyme disease is endemic, you can see that presentation from a mile away and diagnose/treat it.
The problem is people who have untreated Lyme disease who go in to the secondary and tertiary stages. Their symptoms are VERY non-specific, and what I mean by that is that you can have arthritis, fatigue, etc. etc. etc.....all things which can be present in people who do NOT have Lyme. The importance of that is, you can't send off Lyme blood tests in everyone who has chronic fatigue and joint pain because, well... it's an expensive test, and you'd bankrupt the system (though I guess the system in the States is a little different than ours in Canada).
It's easy to diagnose someone coming in with a tick bite, erythema migrans, achy joints and a fever, but that rarely is the presentation and that is why it is not easy being a physician.
you are very right about the Lyme spirochetes infiltrating tissue. Lyme is known to infect joints, bones, the central nervous system and even the heart! But in someone who has tertiary Lyme disease with involvement of any of the organs I mentioned above, treatment with IV ceftriaxone for four weeks will kill all of those "hiding bacteria" because most antibiotics don't just go in to the bloodstream--they penetrate tissues as well. Additionally, the idea of an infection "embedding itself in to tissue" is not unique to Lyme. In fact, most infections do that. There aren't many infections at all which ONLY involve the bloodstream. The only one I can think of is Plasmodium (i.e. malaria), but even it has a stage in its life-cycle that happens in the liver.
Thank you Sherri for sharing. I have an 11 year old daughter who was diagnosed with JRA at age 10. Her symptoms started at age 5 and it took that long to get a diagnosis. We also lived in Michigan just south of the bridge surrounded by the Heron National Forest. We had black flies, spiders, and mosquitoes. The first symptom that I remember is when she was 5 her mouth was filled with sores. Dr. gave her a nasty mouth wash like medication that numbed her mouth. As far as a rash, I was never looking for a bulls-eye rash. I am thinking that she has Lymes though. If I even start to say the word Lymes to my doctor he cuts me off and says "its not Lyme!!" But she all the symptoms...minus the rash...the Dr. tells me that its just the side effect of the medications she on, but I don't think so. She sees a Cartiologist for a heart rate that increases when she lays down, a Neurologist for numbness and tingling in her arms and legs, when she was on Naproxin and Mobic she had speech imparment and couldn't get the right word for the right object, and I am taking her today because of constant dizziness and when she is standing up and closes her eyes her falls over, also the Physical Therapist said that she is much weaker on one side of her body then the other.
When she was on Methotrexate she could not retain any new information. She is having hot flashes all the time. She sees a Rheumatolagist for her arthritis which is getting better on the medications but isn't going away...she is on Orencia infusions once a month.
I need her doctor to listen to me, I feel like I am in a crowded room screaming at the top of my lungs and no one can hear me.