posted
I have a "likely positive" from Igenex and have just started lyme treatment. I never experienced a lot of the classic lyme symptoms like shooting pain or headache. Was diagnosed with CFS 11 years ago and healed myself somewhat with rest and nutrition.
Over the last few years I've had symptoms which made me feel like I'm going crazy: anxiety, overwhelming fatigue, insomnia, depression and unbelievable brain fog as if I no longer have access to my own brain and I feel totally ADD. My concentration and short-term memory have been devastated.
Symptoms that are making me really scared right now: I developed what I thought was carpal tunnel in my right hand from using the computer. There is no pain but my right hand becomes fatigued to the point that it feels paralyzed. This feeling recently expanded to my neck, shoulder, arm and even my leg. It's like parts of the right side of my body start to feel shakey, kind of like they are going paralyzed or numb from fatigue. I googled my symptoms and they seem to be identical to myasthenia gravis or maybe MS. I have no health insurance at this point so I have not run to the doctor to have tests for these things I am just hoping it's lyme. Has anyone had anything like this? When I wake up it's like my strenth has returned on my right side but as the day progresses it gets tired and shakey. It gets to the point that even though I am right handed, I have to eat with my left hand.
I had back surgery 3 years ago and so I've always had some numbness and sciatica in my right leg but now the foot is going completely numb and I have little muscle spasms in my calf and leg. It feels like I'm losing some motor control or coordination in the back of my leg.
I don't know if I should stop using my hand for anything, does it need to heal should it have a brace? I know these are questions for a doctor but I can't see my doctor for another 5 weeks.
Also, I have had strange symptoms in both of my eyes. There was a change in the tissue of my inner eye. It seems stickier, like a slackening. So hard to explain. Also one of my eyes gets really tired. And the muscle above my eye gets tired. Also my eye gets really red and inflamed.
How does one know if one has something like Myasthenia Gravis or MS or if it's lyme? My plan is to wait 5 weeks to see my lyme doctor but I don't know if I should be seeing a neurologist or some other kind of specialist. Not that I could afford it.
Does anyone have weakening paralyzed-feeling muscles? Is it lyme? I don't have any pain it's just that the muscles want to stop working... The symptom in my hand started as a chronic irritation about 9 months ago. The right arm, leg started about 2 weeks ago just after I quit taking rifampin. I had been on rifampin and cefnidir for about two months. I just went to a new LLMD and he has put me on bicillin shots twice a week zithromax,
Thank you for reading this and I appreciate any input regarding these crazy symptoms.
I completely believe in the body's ability to heal but at times it feels really scary.
Posts: 87 | From NorCal | Registered: Feb 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Not sure what you mean by a "likely" positive test. But none the less, Lyme is a "clinical" diagnosis. Only a good LLMD can make that diagnosis. Test are used to back up that clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Hi and welcome - your symptoms do sound like Lyme. The bacteria is in the brain and inflames nerves and soft tissue, causing symptoms anywhere, including numbness and pain.
I think as you continue treatment, you will see improvement in your symptoms.
Maybe give yourself some short rest breaks during your time at the computer.
For eyes, I was able to stop Lyme symptoms by drinking mangosteen juice, an anti-inflammatory antioxidant juice. There are lots of brands in healthfood stores and online. I drink the Ultra brand, with 70 minerals added. If you try it, go slowly, and drink water too.
We have threads on it here. Go to the search function at the top and type in mangosteen and you can read everyone's comments. We're all different, but it worked for me.
Posts: 13127 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had extreme muscle weakness as my predominant lyme symptom. What you are describing sounds very similar to what I experienced.
It is actually not a problem with the muscles themselves, but with the nerves that control the muscles. Lyme is essentially a disease of the nervous system. And, it can do all kinds of strange things like this.
Since you are being treated for lyme disease, a lyme doctor has determined that you have it. You certainly have an awful lot of lyme symptoms named here.
So, I would not worry about having other illnesses like MS, etc. and I would not try to get tested for these diseases at this time.
I would work on getting rid of the lyme disease, which is the most likely cause of all of these symptoms. Then, once you are rid of lyme, see if you have any symptoms left. I'll bet you won't. But if you do, then is the time to seek out other specialties to find the cause of them.
Try not to worry. This disease imitates virtually every disease out there.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you TF. How long did it take after starting ABX for the weakness, nerve thing to go away?
Posts: 87 | From NorCal | Registered: Feb 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Lyme has most likely attacked your nerves. I have
seen some new pictures describing the borrelia
attacking the nerve cells. Prayers for a easy road to wellness.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, first I had lousy lyme treatment for about 2 years and 3 months. My symptoms improved somewhat, but I was far from normal with the muscle weakness.
Then, I went to a doctor who followed the Burrascano protocol, and he treated me for 1 year. I was totally symptom-free after 7 months. So, the muscle weakness slowly went away during those 7 months.
The Burrascano treatment included not only high dose combination antibiotics, but also supplements, artimesinin, diet (basically only meat and non-starchy vegetables, no flour, no fruit, etc.), and the Burrascano exercise program which is a 1 hour weight lifting program that must be done every other day.
I began the weight lifting by only being able to do 10 minutes. But, as I persevered, I was eventually (over a few months) able to do the full 1 hour. I did a full body work-out including arms, legs, abs, etc. As I continued the weight lifting, I was able to lift more and more weight.
My doctor told me that I would NEVER get well unless I did this exercise program. Evidently it does many things including boosting the immune system. That is crucial so that you do not relapse after stopping meds. You have to get your immune system (which has been compromised by the lyme) back to normal so that it can kill germs.
Burrascano also thinks that it may heat up the muscles, therefore driving the antibiotics further into them. Also, it supplies more oxygen to your cells which may help kill the lyme. You can read about the required exercise in Burrascano and what he believes it does in the body.
So, I tell everyone to do this type of exercise. We are not talking about walking, and not aerobics. It has to be weight lifting.
In the one year with the Burrascano type doc, he treated me for lyme, then bartonella, and then babesiosis. (I was positive for all of these diseases.)
I completed my lyme treatment 5 years ago and I am still symptom-free, enjoying my life. And, it is the same life I had before lyme disease.
I do nothing special to keep from getting the lyme diseae back--no supplements, no meds, etc.
However, I am not a drinker or smoker, and I know those 2 things are important.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - Do they recommend continuing the weight lifting after you have completed treatment?
Jalama - During my sons treatment for Lyme he would always get really red eyes, it looked just like pink eye and would come and go sometimes on an hourly basis. But was completely gone a couple of months into treatment.
Posts: 448 | From minnesota | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't remember being told to continue the weight lifting. I certainly don't lift weights for an hour anymore. It is rare that I lift any weights now.
I used to lift weights occasionally after completing treatment, but in the last 5 years I have had various problems that got me out of the habit. (Herniated a disc in my back, got a frozen shoulder.) Now, I mostly walk for health.
I liked how I looked when I lifted weights.
Posts: 9931 | From Maryland | Registered: Dec 2007
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