posted
I went for my second lyme appointment today here is what my wetern blot says
IGM 28 kda + 34 kda IND 39 kda IND 41 KDA IND
IGG 31 kda IND 34 IND 39 IND 41 kda +++
I have had all kinds of problems burning, numbness, pain in legs, fatique, stiff joints, and twitching legs.
Today my llmd gave me Mirapex. A PARKINSONS medicine. He states that I may NOT have lyme!!!!! I am freaking out that I may have Parkinsons, my uncle has it. I have two Young daughters. I am just soooo scared. Now I am more scared them when I thought I had lyme. I have had strange symptoms for 15years... I am so depressed now.
I have been on Doxy for 6weeks and ciflucan for 6 weeks after this week I will go off. To see if I get worse. I guess??? Do other lyme patients have this twitching in thier legs even during the day and at night?
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Don't be scared.
Where was the test performed? What about the other bands on the Western Blot? Are you sure you are working with a real LLMD?
I have twitching 24/7/365 and do not have Parkinsons, ALS or an another other neurological disorder. It's caused by the infection.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Brooke,
Can you describe the twitching?
Many of us have different movement symptoms. I have many.
I have muscle twitching, which is just a single muslce that contracts and releases. Sometimes it is one random one, and sometimes it continues for a while. I rarely get this in the leg. Most common is behind an eye or in my abdominal area.
I also have myoclonus. This is uncontrolled movements, mostly jerks. It is often, although not always, repetitive. I'll tap my left shoulder with my right arm multiple times. Or I'll keep turning my neck so my head faces over my shoulder.
My myoclonus is also sometimes much larger movements. Sometimes when I try to sleep, my whole body basically jumps turning me from side to side. This is usually combined with an anxious feeling throughout my body.
More recently I have had smaller movements. Sometimes my hand will tremor, like you see with people with Parkinsons. I also find that the index finger on my right hand will often just start tapping without being able to stop.
Most of my myoclonus and other movement issues are on my right side. Most upper right, neck and arms. But my legs have gotten more involved recently.
I know, this is terrifying. The lack of control is extremely scary, as are the though of something like Parkinsons that can't be cured. I know have Lyme. I saw the rash, had positive tests and have a history to back it up.
On a positive note, these symptoms led to me changing my life. I am in law school and recently decided that I want a career in advocating for people with pain and neurological disorders.
I am particularly interested in the connection between diseases like Lyme and disorders like MS, Parkinsons, ALS, etc. I don't believe everybody with those disorders has Lyme. But I do think we will one day discover that most of these disorders can be triggered by a variety of infections, including Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter would say at night she would get the "jimmy leg". She was put on Mirapex because it was touted as a drug for fibromyalgia, and helped with weight loss It did help the restless leg, but decided to go off of it because we wanted one less pill to take.
It didn't help with weight loss. She has gained 80 pounds with her Bartonella.
It doesn't mean you have Parkinsons, but it was designed for their symptoms.
I would still look for Lyme or coinfections.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
posted
My twitching is like a thumping in my legs I can sometimes see it near my knees but mostly it is in my calfs. I was told 15 years ago I had fibromyalgia and then I researched lyme and had 45 yes's on the question sheet. I had the western blot done at Igenex and My lyme dr. says that the blot is not 100% that I have lyme. I am concerned about going off the antibiotics since I have only been on it for 6 weeks. I have to say that my baody pain is improved.
I am so confused now, do I have lyme or NOT!
Posts: 24 | From Iowa | Registered: Apr 2006
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Ladylyme
Please don't be frightened. Make a plan.
If your doctor won't prescribe meds for you anymore, move on to natural treatments. You can do many natural things in conjunction with meds. Just be sure to confirm them with your doctor.
Stephen Buhner's book "Healing Lyme" lays out a great protocol for treating Lyme with herbs. Herbs were the antibiotics prior to antibiotics.
GiGi has MANY posts on Lymenet that address other issues you may have that are complicating your healing process. Research these and see how many fit you, then pursue eliminating them.
Find another LLMD for a 2nd opinion too. Even if you have to fly to one. Your health is worth it.
This is your life and your body! Don't let anyon e or anything stop you from obtaining maximum health. You can do it!!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Certain co-infections block the appearance of Lyme in blood tests. Plus, the longer you've had Lyme, the deeper it is in your system. Sometimes it doesn't show up as strong.
Not 100% doesn't mean you don't have it.
I don't understand the theory of stopping treatment. For many people, 6 weeks into abx they feel worse because of herxing. Going off the abx they would definitely feel better. But, they have Lyme.
Sometimes people are misdiagnosed with Lyme. But if you think you have it, why stop after 6 weeks of treatment when you had it fo 15 years?
There is no known cause for Parkinsons. All they will do is treat symptoms. You can treat symptoms and kill the Lyme at the same time. Many of us do that.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
1 of those originally dx'd Fibromyalgia and 1 Parkinsons and 1 MS.
I would seriously consider having your uncle checked once you find a real LLMD. As well as your daughters. My mothers Fibromyalgia??? was contagious she gave it to me and I passed it to my 4 kids.
Also you live in Iowa which is becoming a real hot spot for Lyme.
Best wishes! Magnesium injections might help your twitching.
Posts: 399 | From Texas | Registered: Apr 2005
| IP: Logged |
posted
I second the motion on starting a magnesium supplement for the muscle twitching.
Sometimes it takes a positive coinfection test for docs to seriously consider that lyme might be present in the same patient even tho they have not tested positive for it.
So, if you were not checked for babesia, bartonella, and ehrlichia at a minimum, it would be a good thing to do, just in case. Would give you and your doc more evidence.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You have clear evidence of potential Lyme Disease and exposure to Borrelia. You should find another doctor if you are not comfortable with the path he is going down. I have seen people in wheelchairs with PD that were later up, running around after treatment for LD and related issues.
You need to have coinfection testing done as well. If your LLMD did not do that, I wonder if he/she is really an LLMD?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
I take mirapex for restless leg syndrome, whether part of the lyme, or whatever. My symptoms were that I had the feeling that I needed to move my legs or I would go crazy. It made it impossible to sleep and was very torturous. The mirapex helped greatly with this symptom.
I am sending you a private message. Jen
Posts: 23 | From USA | Registered: Feb 2006
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic