Everything went weird for me on August 10, 2005. I am a very active, heathly female who exercises 5 days a week. On that day, I woke up and didn't feel right and didn't want to exercise.
After dropping my two kids at daycare, I went to work. I felt shaky and not myself. While I was talking on the phone, my right side of my face went numb and got tingly. Also, my jaw felt stuck and I had a hard time moving my mouth. The client sensed that something was wrong because she said she was getting a bad vibe from me.
I had trouble focusing all day. Two days later, I woke up with a pain in my ear and a headache over my right eye. I thought maybe I was getting a sinus infection and ear infection so I went to my PCP. No ear infection, but my throat was a little red so she prescribed Zithromax.
Two days after that, I had an incredible headache in the back of my head and my neck was extremely stiff. Plus, my right gland in my neck was really swollen. I had a slight fever of 100. I felt dizzy and out of it. I went to the doctor. They took blood and x-rays of my neck. Everything was normal. The doctor wanted to test me for Lyme. That's the first I had heard about.
Other symptoms started to manifest. My left eye would blur, my left ear would be clogged, my eyes would twitch and pulsate, and I was shaky. I began to have this buzzing/vibrating sensation on my left side of my body. I would tell people that I was vibrating/moving and they couldn't feel it. It was all internal. My muscles would twitch.
I had to leave Walmart twice because the lighting in there affected me - I thought I was going to have a seizure or stroke.
The pressure in my head and the buzzing in my body kept me up many a night. I had panic attacks (never had one in my life). My pulse rate would increase for no apparent reason. I would get phantom fevers of 100.
I had 3 MRIs (brain, neck, thoracic spine), bloodwork, testing to rule out MS. The neuro told me I was stressed out and depressed. Both of my Elisa tests came back negative.
I began to research Lyme and the more I read, the more I was convinced that was the problem. My doctors would not believe me. I printed many articles from this website and took it to my PCP and demanded a Western Blot.
The Western Blot came back negative according to CDC standards. However, I tested positive on bands 39 & 41 (most specific for Bb).
I went back to my PCP and told her that I was exposed to Bb and really thought I had Lyme and please put me on abx. She agreed and put me on Doxy. I got a referral from her to see Dr. D. in PA (LLMD). My appointment is Feb. 14. I'm curious what the Igenex Western Blot will show.
I don't have a lot of the symptoms now, but I still have some buzzing and muscle twitching.
The most important thing that everyone with Lyme has told me is to take it seriously and get on abx as soon as possible. If left untreated, it will drastically change your life.
So, if you suspect you have Lyme, pursue, pursue, pursue the diagnosis from a LLMD and get treatment.
Hope this helps.
Cinder Posts: 60 | From USA | Registered: Nov 2005
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posted
I want to know because I believe I have lyme. I've been diagnosed with CFS and am seeing a Dr. at the FFc and the next step is to get tested for underlying viruses such as Lyme.
I never considered Lyme until I started reading about it and everything about it sounds like me. I have all these strange neuro symptoms, fatigue, etc and ahve been told by all dr's that I'm "depressed" and "anxious". I've seen 2 PCP's, 2 neuros, a GI dr., a psychiatrist and an allergist. This has been going on for close to 10 years.
Thanks, Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Cutie,
Lyme is not a virus. It is a bacteria.
I wouldn't use other people's stories as a way to self-diagnose. I'd find a specialist who deals primarily with Tick Borne Diseases, of which Lyme is one.
Good luck to you and best wishes.
Posts: 1066 | From East Coast | Registered: Dec 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Lyme disease has some common symptoms, but it has very different effects on most patients. In other words, what works in treating one does not work in treating all. You can also have other infections transmitted by the same tick that transmitted Lyme disease.
Therefore, hearing a lot of people's stories will be informative, but could be confusing.
If you go to www.ilads.org you will find most of the information you need.
You would do well to contact someone in your area who knows about good doctors. You can go to "Support Groups" in the menu on your left, and you can ask for a good doctor in your area by clicking on the "Seeking a Doctor" board at the bottom of this page.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by cutie: I want to know because I believe I have lyme. I've been diagnosed with CFS and am seeing a Dr. at the FFc and the next step is to get tested for underlying viruses such as Lyme.
Thanks, Cutie
Hi there Cutie.
The fact that this "FFC" you speak of has dx'd you with CFS is not so great. The fact is that chronic fatigue syndrome is really just a bunch of symptoms. Caused - in many people's opinion - by underlying Lyme disease. Same with fibromyalgia. In other words, these aren't actual diseases, they're just SYMPTOMS of another disease, which is Lyme disease.
Now, I would be surprised if this FFC diagnosed you with Lyme after it already diagnosed you with CFS.
I would be surprised if they used any kind of decent Lyme testing.
In the Lyme community (i.e., here, and most LLMD's), we use IGeneX, or Bowen for testing. Because they are the absolute best. And in interpreting your test results, any positives or sometimes even equivocal results on Lyme-specific bands mean you have been exposed to Borrelia.
Meaning you DON'T really have "CFS."
In fact, if you took a poll of us Lymies, you'd probably find most of us to be candidates for a CFS diagnosis, as we're dragging our sorry butts around and trying to stay awake in the afternoon (count me in this number!), fighting chronic pain and fatigue daily.
However, magically, this "CFS" and "fibromyalgia" stuff tends to disappear with individualized long term antibiotic use targeting your borrelia infection.
See an LLMD. Or at the least, insist on western blot testing from IGenex. Nothing else is comparable. A negative lyme test from this center which has a vested interest in labelling you with something OTHER than Lyme has little diagnostic value.
Good luck, Cutie. And welcome!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thank you. I'm not trying to self diagnose (although I've gotten more help from the internet and sites like this than I have from any doctor) and I'm so frustrated because I'm not crazy and I don't need a psychiatrist.
I just have all these wierd symptoms and doctors keep telling me there's nothing wrong with me. I'm frustrated that a dr. has never even suggested lyme or being tested for it. I didn't know a thing about lyme before about a month ago.
The FFC didn't diagnose me...a dr. did about 10 years ago - I think because he didn't know what else to tell me! I'm just sick and tired of being sick and tired. I want to be well.I've been a member of immune support.com for a few years now and it seems like a lot of the members on there are now being diagnosed and treated for lyme, which prompted me to do my own research.
This is why I'm curious about people who have been diagnosed with lyme, and their symptoms and why they were led to be tested.
Thanks for all your comments. I appreciate them more than you will ever know.
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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posted
For me... my body was doing so many strange things. For one, twisting, causing bones to come out of place. My head hurt terribly; I started freezing from the inside out; had night sweats; terrible abdominal pain. I simply hurt all over. I had never had such terrible pain in my life. In fact, I didn't think it was possible to have so much pain.
The only thing that seemed to stop it was morphine injections from the ER.
I went to a number of different doctors. No one really knew. I ended up at a chronic pain center. Their answer was more major drugs.
Finally, someone told me about a chronic pain doctor in another state that was really good. I went to him and lo and behold he was also very knowledgeable about Lyme.
We did a bunch of tests. I came back extremely positive for Lyme. I believed it, because I remembered a strange spot years ago on my back that took a long time to go away. I never really forgot that spot. It was really weird. But, back then, I always blew physical ailments off.
I didn't realize then that you can fall apart enough that you just can't ignore it.
In a nutshell... that's my story.
I highly recommend you post in the finding a doc section and go to someone that knows about tick borne diseases.
Don't give up. You'll find the answer.
quote:Originally posted by cutie: Thank you. I'm not trying to self diagnose (although I've gotten more help from the internet and sites like this than I have from any doctor) and I'm so frustrated because I'm not crazy and I don't need a psychiatrist.
I just have all these wierd symptoms and doctors keep telling me there's nothing wrong with me. I'm frustrated that a dr. has never even suggested lyme or being tested for it. I didn't know a thing about lyme before about a month ago.
The FFC didn't diagnose me...a dr. did about 10 years ago - I think because he didn't know what else to tell me! I'm just sick and tired of being sick and tired. I want to be well.I've been a member of immune support.com for a few years now and it seems like a lot of the members on there are now being diagnosed and treated for lyme, which prompted me to do my own research.
This is why I'm curious about people who have been diagnosed with lyme, and their symptoms and why they were led to be tested.
Thanks for all your comments. I appreciate them more than you will ever know.
I must tell you, the FFC's are doing a good job with the lyme protocol. They have had so many CFS/FM folks come in there that do have lyme that I believe they are taking a cram course on treatment protocol.
I think the reason they give the first dignosis as FM or CFS is for insurance purposes. They know these are just syndromes.
My first visit they took 23 vials of blood. They treat the whole body with bio-identical hormones first.
Then they test for hypercoagulation and if we do have "sticky blood" they put us on Heparin and Lumbrokinase.
After that, they test for lyme through Igenex along with coinfections and viruses.
They treat with long term abx along with Samento, Cumanda plus all the other supplements to build up our immune systems.
Its nice to not only have the lyme and viruses treated but the hormones such as thyroid, progesterone, testosterone, estrogen, cortisol and whatever else we're low in.
Just wanted to let you know they are taking lyme seriously and are about the next best thing to an LLMD (although one person on this site said she'd love to go to an FFC since most LLMD's don't treat the whole body but just the lyme).
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by karatelady: Michelle,
I must tell you, the FFC's are doing a good job with the lyme protocol. They have had so many CFS/FM folks come in there that do have lyme that I believe they are taking a cram course on treatment protocol.
I think the reason they give the first dignosis as FM or CFS is for insurance purposes. They know these are just syndromes. Sandy
Thanks for the clarification, Sandy! I'm glad they are taking it seriously and also glad to hear they are using good testing.
Still, you have to wonder.. in the absence of a positive IGeneX test, do they ever diagnose Lyme CLINICALLY? Considering that up to 30% of chronic Lyme patients are seronegative?
That worries me.
If a patient has a 'negative' test, i.e., not enough bands to be positive, but with one or two weak positives or equivocals on borrelia-specific bands, do they treat that as a positive test?
That worries me too.
The whole-body treatment does sound very impressive.
And, from an insurance standpoint, they may be onto something good!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I forgot to mention that one of the very first things our doctor said was lyme was a clinical diagnosis. They mail us a 24 page questionnaire before our first appointment.
My doctor started me on Heparin even though my hypercoagulation wasn't that abnormal. She said the longer we have these viruses/bacteria, the more normal the blood work will be even though we probably still have thick blood.
I see a lot of promise with these centers for all these poor folks being given a diagnosis of FM/CFS. On our Immunesupport.com website, there is a lot of discussion and some controversy about their alternative ways such as viral IV's (which have helped me) and other types of IV's.
I also give myself my own glutathione, B-12 shots which is nice to have that option instead of having it done there.
All in all, I'm very pleased with their treatments. I was told a few months ago they will be getting in abx IV's so I believe they are working hard on the lyme issue. I think they've had to with so many patients coming up positive.
The man who started the centers had FM/CFS and the joke is, let a male doctor get sick and something will get done!
posted
Hi cutie-my symptoms started in the fall of 1986. It started with feeling like I had the flu. I was very weak and could hardly lift my arms. I was very fatigued and then the pain started in my whole body. I had a lot of pain around my ears and it would wake me up. My ears were very sensitive and I couldn't lay on my side(either side). My fist diagnosis was "stressed out working mom--get a cleaning lady". Then came "you're depressed, you have chronic fatigue syndrome, fibromyalgia, depression." I couldn't sleep, I had massive headaches and body pain, I couldn't concentrate(couldn't even read a book), my life just went to he**. The body pain was horrible, the depression was worse and my memory and concentration were shot. I have been on antidepressants since 1986. I was told I have bipolar disorder 2, caused by lyme disease. I was tested treated for lyme in 1988 but the treatment was long enough or strong enough. I have a 16 year old son who is now complaining about pain in his knees, legs and hands. I got pregnant with him while I was being treated the first time and was feeling pretty good for a month or so!! Then the symptoms came back while I was pregnant and I was treated again. I'm afraid that the treatment wasn't effective enough to protect my unborn baby and now he's suffering from lyme. He's going to the dr. on Friday(not my lyme dr.) and we're going to see what he thinks. I'm hoping it's just growing pains, because he's been ok until now, but in the back of my mind, I'm worried. If I don't get any satisfaction from this dr., we'll take him to my LLMD. He's had learning problems and was slow in some development things, but maybe that's just the way he is. My daughters, who were born before I was sick, did well in school and didn't have problems. I kind of rambled here about other things, but my basic symptoms were pain, fatigue, depression and brain fog. I've been on IV rocephin since April along with various oral antibiotics. I'm off all antidepressants and doing so much better. I hope you are able to find a dr. who will help you. Good luck.
-------------------- "I can see clearly now" Posts: 22 | From midwest | Registered: Dec 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
FFC? What's that?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi cutie, I've also been on the immunesupport.com board for quite awhile, and am new on this board as of today. My story is that I was working part-time, in graduate school fulltime and doing an internship, and had my family as well.
Suddenly became extremely ill and in great pain with a dysfunctional gall bladder. Eventually had it out, and that ended that problem, but never got back to my normal health.
I had debilitating fatigue and neuro-cognitive problems. These have always been my worst symptoms. Examples: Difficulty tracking conversation, can't find words, processing problems, sometimes can't speak sentences, memory gone, analytical thinking difficult, etc. along those lines, and most recently have developed super-sensitivity to lighting, esp. in stores or highway lights.
Easily overwhelmed, can't handle stress, etc. My former self was in a super-stressful job, did well at multi-tasking, high achiever, etc., now unable to work at all.
Other symptoms, TMJ, sleep disorder, pain in muscles, headaches.
I was DX in 2000 w/CFIDS from my ND. Tried one treatment after another with only temporary help at times.
I found the FFC at immunesupport, and felt that it would give me the best opportunity to get to the bottom of my problem, and recover. So I started TX there in March, at which time many underlying causes were identified, such as hormone imbalances, low thyroid, low NK cells, mycoplasma, echovirus and candida.
In October I switched to an FFC in the state where I live which had recently opened. I told the Dr. that I had not improved since March, and in fact was feeling worse. She suspected Lyme and had me take the Igenex Western Blot. I tested positive and have started treatment.
I had been tested in March at FFC for Lyme, but they used the Quest test which is not reliable. If you suspect Lyme, I suggest that you ask them from the start to give you the Igenex Western Blot. If they had used that initially with me, it would have saved a good 6 months.
I agree with karatelady that they are getting up to speed with Lyme issues, and that they identify and treat the problems that the Lyme has caused for us.
Good luck at your appointment, and with finding the answers you are looking for.
Posts: 873 | From WA | Registered: Dec 2005
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posted
My husband was diagnosed with Lyme's disease after five weeks of he**. He gradually got more and more sick. Shaky, night sweats, chills, headaches, dizzyness, unable to concentrate. We saw a wonderful doctor in Wisconsin and he diagnosed Lyme's. He started my husband on Doxy and in 2 weeks he was his usual self. Now its back! He's had a relapse for about 3 weeks. We called the doc and he started the doxy again. Its not working. He had all the same symptoms that he had before. This doc is on vacation so his nurse referred us to the local doc. They looked at his chart(the other doc send down the diagnosis and all paperwork) and said "I don't believe you have Lyme's, theres no such thing!) UGH!! So tomarrow I am going to have a little chat with the administrator of the hospital and also the doctor. THis disease is so misdiagnosed and some doctors just don't listen to the patients. Since my husband got sick its been one battle after another trying to get him treated. I don't know why it seems like the doctors have blinders on when it comes to diagnosing this. If you want I will keep you posted. Let me know. Have a happy New Year/
Karen
Posts: 1 | From Wisconsin | Registered: Dec 2005
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