I guess this will be a pretty long thread because I have been suffering for so many years now......but I think I should give some idea of my story, im really sorry if this is so long....
Here is a list of my state of health for the past several years. I am now convinced that almost everything on this list has been caused by having Lyme for probably a year or longer before these symptoms started. It is as thorough as I can remember.
Back problems start; I am almost unable to go up the stairs anymore, I have a hard time turning my neck, and a hard time driving.
I go to the chiropractor three times a week to have my back/neck adjusted.
Woke up with a swollen foot. After x-rays, diagnosed with Capsulitis (misdiagnosis). In a cast for two weeks
Sent to Infectious Disease doctor. Foot was red, swollen, and hot, sent for mriís, and body scan.
Scans come back and I take them to my Endocrinologist
Endocrinologist looks at my MRI and admits me to hospital that day.
I am unable to go to the chiropractor anymore because I am now in the hospital, and later bedridden.
I am diagnosed with Osteomyelitis (misdiagnosis) in my foot. Administered IV antibiotics (Ancef)
Given numerous tests, SED rates tested ,temperature, white blood cell scan, More mriís.
During this time period of tests, I have also been tested for Lyme several times and they are deemed negative
I am still being told I have Osteomyelitis, and that the antibiotics are not working. I may have to go through an amputation of the affected toe, or maybe the foot.
They tell me they will continue the antibiotic therapy at home, so I am given a pic line. I have a home nurse, am administered Ancef daily, and have my blood taken every three days to check my SED rates (which are consistently high)
They change my antibiotics to Rosephen.
My knee suddenly swells up, the doctor believes that the ďinfection has spread to my kneeĒ, and orders that it be drained for a sample of the fluid.
They take six needles full of fluid out of my left knee, leaving it full of scar tissue and extremely injured.
I am told to go to physical therapy for my knee.
The Rosephen starts to wipe out my system; I am unable to keep down food. I vomit everything I eat. I start losing weight.
The tests for my knee come back negative for any bacteria. There is no infection in my knee.
I am told that I will need a biopsy of the foot because my SED rates have not gone down, and they want to know exactly what type of bacteria is causing the infection.
End of May 2000:
I find a new doctor to do the biopsy of my knee
I go to the new infectious disease doctor who looks over my history, takes some blood and tells me he absolutely doesnít believe I have Osteomylistis.
The new doc takes a series of blood tests
June 8th 2000:
The doctor calls and tells me the pic line can be removed, that I have psoriatic arthritis, and gives me the number of a rheumatologist.
By this time, for being bedridden for so long, I have lost all the muscles in my legs, unable to walk, and have lost thirty-five pounds, and am now anemic.
I begin taking Methotrexate, Celebrex, and folic acid on a daily basis. I join a gym and gradually work my way from wheelchair, to walker, to crutches, and finally to a cane.
My elbow starts hurting, and I canít bend my arm. I go to my arthritis doctor who diagnoses my elbow with having bursitis.
During this time period it is hard to get up in the mornings, my body is so stiff and the muscles everywhere ache to the point where it is hard to move.
I start to notice that I am having problems with my short term memory. I canít remember things that happened just a couple seconds earlier, this has not gone away since.
It is also around this time that I start to notice hair loss
June 2000 Ė July 2002
I have remained on Celebrex, but stopped the Methotrexate because I felt no difference on it.
July 2002: I move to Denver from NJ.
During this time the heel of my right foot starts to hurt more and more. I finally get to the point where I can barely stand on it.
I go to a podiatrist who tells me I have bursitis in my heel (misdiagnosis), he also tells me that I can take more Celebrex than what I was taking (two pills a day) if I needed it, and that it wouldnít hurt me. I was also prescribed Vioxx for my heel if the pain got really bad.
A week later:
I am rushed to the emergency room, I canít breath, and my stomach is swelling up. My heart rate is 134 in the ambulance. I am put on a heart monitor at the hospital and Pepcid.
I go home from the emergency room with a prescription for 20mg of Pepcid.
At this point, I am throwing up almost every morning. Not food, but acid, and sometimes if the vomiting is very aggressive, blood as well.
I call my primary care doctor who prescribes Nexium, she tells me that itís probably acid reflux (even though I do not suffer from any heart burn)
Believing that I have arthritis in my heel, I go to physical therapy. My primary care physician tells me she will prescribe physical therapy but if it does not improve soon, she believes it might be nerve damage and she wants me to try a neurologist if I donít start feeling better.
The physical therapy is making my heel worse.
My arthritis is getting worse, as well as my heel. My shoulders are starting to be affected, I have bursitis in my elbow, and I canít put pressure down on my right heel.
I go to another doctor who orders an MRI. The MRI comes back and says I have plantar fibromatosis, Achilles tendonitis, and calcium deposits in my tendon. The doctor tells me he believes that it is psoriatic (something Iím later told by another doctor couldnít really be diagnosed with an MRI)
He recommends ESWT, but tells me he is unsure if it will work since it is psoriatic.
I undergo three treatments of shockwave therapy on my heel. It makes it swell up more.
After the treatments, the doctor recommends I go to an arthritis clinic. I go, and they take x-rays of all my joints. I am put on Methrotrexate, Prednisone, and folic acid. I am prescribed physical therapy for my heel again, and am told that I must start walking on my heel (I walk on my toes because it is too painful to put my heel down)
I stop the Prednisone about three days after I start it because it makes my stomach swell up.
I start physical therapy on my heel again, and am told to stretch and walk on it (all this making it worse and worse).
I am getting blood taken every month to monitor the medicine. My liver functions are going up because of the Methotrexate, finally to the point where it is over the levels they should be. I am worried, but am told that my dosages will remain the same, and not to worry until they are double what they should be.
My heel is getting so bad I can barely walk. Limping for months now has caused my whole body to become unbalanced. My lower back hurts, my neck is usually so tense I canít move my head, and my left knee problem starts to come back again. I start using a wheelchair most of the time.
I am prescribed Enbrel, and go home and read about it online. I find out the link between lymphoma and Enbrel and call my arthritis doctor with questions. I leave several messages, talk to nurses, and not once am able to talk to the actual doctor.
I refuse to take the Enbrel, I stop taking the Methrotrexate, folic acid, and have not gone back to the arthritis doctor since then.
this post is so long, i have to post in two parts.......sorry
The following user gives a hug of support to lymiesarah: shabootsi (01-01-2011)
I am so sorry to hear everything you have gone through and are still going through. So much suffering, my heart goes out to you.
It was good that you were tested for Lyme via Q-Ribb, and based on your symptoms, I suggest that you go one step further and have your blood sent to IgeneX Labs in Palo Alto, CA.
The reason I say this is because I think you may be suffering from Babesiosis (based on your symptoms) which needs to be treated aggressively. Most people who have lyme usually have the coinfections such as Ehrlichiosis, Babesiosis, Mycoplasma, and Bartonella.
I don't know what doctor you are seeing, I just hope it's a "reputable" LLMD (Lyme Literate Medical Doctor).
If you don't mind, I am curious to which doctor you are seeing for treatment as the right doctor makes all the difference in the world as far as getting better.
I also had problems with my legs and my knees also swelled up, all that is gone now so Lyme is curable!
It is also important to learn how to detox and rid your body of toxins. There are many good threads on this site about detoxing.
I am a sorry for all you have been through. Don't apologize for the length of your story, we all say that when we enter our backgrounds. I echo the good adivce that you got from the others. Get tested at Igenex. You will find a lot of great support and advice here.
I too was moved to tears when I read your story. You are among lyme friends here. We have been where you are. Our symptoms may vary but we all suffer from the devastation of lyme and what it does to our familys too. We are here to listen and advise when you want it. We help each other. We understand each other.
One thing I want to add, you mentioned your sexual desire. Well my is non-existant. I told the LLMD this and they tested my testestrone level. Even women should have about 50 when men have 200. The test didn't read under 20. Mine was under 20. I had a testestrone shot of 50 and had no ill effects from this. I will need to have this once a week until my body starts making its own. When the time is right, you might want to check into this.
thankyou all for your kind words.... to answer a couple q's... I did have the igenix test that said I did not have any coinfections, thankfully. Also, I was seeing Dr. Streit in nj, but flying out there to see him is too much for me (I live in CO), so I am now seeing a dr richard in lafayette co. He seems to be very knowlegable, and sees about twenty patients with lyme at any given time...probably because there are so few lyme literate docs where i live.
its nice to know there are people outthere who understand what i am going through
Your story touched me deeply. I am truly sorry for all you have gone through.
Getting a good Dr. is essential. There are several people on this board that should be able to tell you of Dr.'s in your area (not something I am to up on).
Lyme's Disease is extremely isolating. Have you read anything about it? There are several good books that help explain what is happening. One is Beating Lyme's Disease by Dr. David Jernigan. There is another one people talk about, but I haven't read it so I can't remember the name. In the beginning I couldn't read, so my husband would have to read parts of the book to me. Then I would overload and couldn't listen to anymore for awhile. This is a devestating disease that robs us of much, but it can be overcome as people on this board can attest to.
Mainly I just wanted to say welcome, and how sorry I am for your pain. Use this board often for advice and relief and blowing off steam and friendships. We are people who do understand.
Many of the symptoms you described could be Lyme related, however you need to see a Lyme literate medical doctor for evaluation. It does not sound like the doctor you saw in NJ was Lyme literate, as 200 mgs. of doxy is not sufficient. If you give us the area you are living in someone here can find you the nearest LLMD.
Good luck, and hang in there, there really is good treatment available.
unfortunately the doc i was seeing in nj is well known for treating lyme patients, i think he was being overly careful with me because i lived in another state, and i realised that would do me no good at all so that is a big part of why i switiched.
do any of you live in co? i have not been able to find anyone here that has lyme... or any support groups or anything
When I read your post the other night (around 2:00 AM) I was too tired to post and for the last couple of days they have been redoing water mains on our street and keeping breaking the phone line so I couldn't respond until now.
First of all let me say welcome and you've come to the right place. You won't find another place with as much compassion and as many answers to your questions. We do joke around at times too to lift spirits.
I must say when I first read your post all I could think of was a response I got from my very first post. It read "OH MY GOD!" As I read your post that is all I could think of and kept saying it over and over again.
You could look up the first post any of us has written and see that usually the first one is quite lengthy. I had to cut the last paragraph out of mine because it went past the 10,000 characers allowed.
I'm sure that there isn't a person on here who doesn't relate to at least one of your symptoms. I myself was told I had MS and knew this wasn't true. First of all my symptoms were 24/7 and I was 52 which is kind of old to be getting MS for the first time.
I relate to the swelling joints because mine were doing the same especially my elbow. I went to my GP for some naproxen and he also gave me some valtrex thinking maybe what I had been dealing with for 18 months was a virus since they couldn't seem to pinpoint the problem. I had a reaction but the doctors jumped on this with both feet and then insisted it was MS and it has been downhill ever since because they doused me with steroids which is an absolute nono for lyme patients. They just wouldn't even consider a reaction to the valtrex.
I am so glad you don't have any co-infections to deal with. My tests from Quest and Labcorp came back negative in the past and in October I started seeing an LLMD in Springfield, Missouri to try and get rid of the lyme once and for all. He is sure it is lyme and didn't even want to test but I insisted. Igenex said I had 4 positives and 1 indeterminate band and according to CDC this is still a negative but made me feel better because the other labs were only showing 1 positive band.
I was lucky enough to have an ID doctor give me an IV of Roecphin for 9 weeks in 2004 but he readily admitted he was not lyme literate and didn't know about co-infections. My liver enzymes went crazy so that had to be stopped so I tried the natural route for a while but had to switch as my husband was getting frantic. I feel very comfortable with my LLMD and he seems to be well versed in lyme. I think this is what you need to make sure is a priority. Find a good doctor and have confidence in him. I wonder just how many things you had done to you that were so unecessary. That is why I cried. Can you inmagine if they had removed a toe or foot and it was really lyme. It makes me shudder. We have all had the naysayer doctors but between mine with the steroids and yours with too many procedures to list it is a nightmare.
I know you are seeing a doctor now who is somewhat educated with lyme but keep an open mind if you don't see some progress. Which lots of time is via a herx and that's when you feel worse. So how do you know you are making progress? It doesn't make sense because meds are supposed to make you better and not take this long doing it but that is the nature of lyme. Some day they will have a cure for this when the CDC wakes up and realizes just how prevalent this is but until then we are our own best advocates.
I don't know of any doctors in Colorado but maybe somebody on here does. I travel from Dallas, Texas to see Dr. Crist in Springfield, Missouri. I spend more time coming and going than at the appointment but feel it is necessary if I want to get better. He even has a couple of patients in Wisconsin who make the drive. Gather your data and go from there. Both Dr. Jernigan (natural) in Kansas and Dr. Crist (traditional) in Missouri have very good websites. Learn as much as you can.
Some people on here are getting better naturally and others are on abx. As Jeanne said it is a personal choice. A lot of people even combine the two. Keep us posted on your journey and come to your fellow lymies for anything you need.
Yes, this disease is a very lonely one and does isolate, that is why I am so grateful for this site!
Maybe this disease should be called "Isolation Disease" as practically everyone I know on this site has lost friends, boyfriends, husbands, close family relationships, etc.
I personally do not know of any LLMD's in CO. Sadly, there are not enough LLMD's in this world but I know that will change in the future.
I am one of the members who chose to use Dr. Jernigan's protocol, actually, it was a twist of fate, but that's another story by itself.
All I can say is I am doing so much better taking Dr. Jernigan's biological medicines and following his protocol.
You may want to consider buying his book "Beating Lyme Disease Using Alternative Medicine" by Dr. David Jernigan. I bought my book from Amazon at a great price. I'm not saying you should use that route, but it can't hurt to read his book. Dr. Jernigan had lyme himself as well as his family, he has a fantastic history of studying biological medicines and tests them thoroughly before he would even consider manufacturing them for others to use.
Whenever you have questions, or you are just feeing down in the dumps, please post. This is such a wonderful Site!
I just wanted to thank everyone for being so helpful and giving so much advice. I tried some natural stuff and after months of that, and hundreds and hundreds spent every month I finally gave in and started antibiotics which was really something I was very scared of. The doc I am seeing now is really great and I do trust him.... I really hope that the treatment he has me on works or at least is a step in the right direction, I am so tired of constantly waiting for some sort of reactions from every new treatment that I try. For once rhough, I do have a feeling I might be on the right track.
I am sorry if it takes so long for me to respond sometimes, the Lyme has really damaged my hand i have a hard time typing, which is why i sometimes have a lot of spelling mistakes.
Never worry about how often you post or how quick you reply, any thread will get flagged to the start again, so we can share your news.
Tears for you when reading and so much wanted a magic wand, the waiting game is very fustrating, everyday hoping for some changes and it will happen and im thinking sooner rather than later as you are well over due some relief of this disease.
It is Very lonely no matter how close you are to someone its a personel battle, which on here we can share.
You are such a fighter as it reads in your post, the fact you are here means you wont let it win.
Here everyone shares the same thoughts i hope you will find enough support to keep your positive side up, its so very important.
Some times i try to stay positive and say to my self " well im not feeling very positive today, but im not letting you buggers know it". just to defy them.
I did smile at your post, found something lovely i think.
May be its the way you had written your diary that day, but i noticed you wrote Boyfriend in 2004 to husband in 2006. If so then i have to congratualte you, as with all you are going through you are still kicking *** and moving on, and that is so wonderfull
hope to catch up on your treatment soon.