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Old 08-05-2004, 02:59 PM   #1
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Wink Lyme And Ms Diagnosis?!

In May I experienced tingling in legs and had blurred vision. Went to the ER on Dr.'s orders and had MRI. MRI came back showing at least 2 lesions. My diagnosis upon release was probable MS. No other symptoms of MS. Passed all neuro. exams. No prior history of MS episode. I went to see a LLMD on the advice of a friend because I had been suffering with many symptoms for the last 2 years (i.e., fatigue, mood swings, interrupted sleep, headaches, light and sound sensitivity and others) All tests went to Igenex and came back positive for Babesiosis IgG 1.40 titer and several bands of IGG and IGM western blot. I'm being treated for these infections and co-infection for the last 2 months. Zithromax 500 mgs. a day and Mepron twice a day. My vision is back to normal. I've seen three Neurologists who agree that my MRI does appear to be of someone who has a demyelinating process such as MS. The LLMD says that someone with untreated Lyme for as long as I've probably had it 18 months or longer can have MRI's that look like MS. Has anyone ever had a similar experience or diagnosis. I feel good about starting treatment for Lyme but I still have the MS diagnosis hanging over my head. I'm confused and scared that I'm not doing anything to treat the "probable MS diagnosis". I had a spinal, neg. for mylein protein but showed 2 gamma bands. Serum did not show protein or bands. Anyone else have a similar experience or diagnosis? Thanks in advance.

Last edited by Jenn100; 08-05-2004 at 04:12 PM. Reason: ERROR MADE IN POSTING MESSAGE

 
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Old 08-06-2004, 12:42 PM   #2
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Re: Lyme And Ms Diagnosis?!

Hi Jenn100, welcome to the board!

Many people who have Lyme disease were first diagnosed with MS. Lyme disease can cause MS-type lesions on MRIs. Good for your friend to recognize your symptoms.

I definitely believe you are on the right track. I am gald your tests were done at IgeneX and the meds you are taking are effective against Babesiosis. I have had Babesiosis and it can cause many symptoms. Just make sure you stay on the meds long enough, or it may come back. It sounds like you are seeing a knowledgeable doctor, which is very important.

 
Old 08-06-2004, 04:10 PM   #3
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Re: Lyme And Ms Diagnosis?!

Thanks Ticker for your post. I have learned so much by reading posts from people such as yourself and others that have been so informative and helpful. It wasn't until I read experiences on this board and heard a lecture given at a local town by a LLMD that I started to think "hey I have all of those symptoms". I never heard of co-infections and just assumed since I tested negative for lyme it couldn't be Lyme related. Were you treated with IV antibiotics after the orals? My Dr. mentioned that I might have to do IV after 6 months on orals. Are you now 100% free of any symptoms? I just hope my HMO covers the length of treatment on antibiotics. What other symptoms did you experience? I continue to feel the fatigue, pins and needles, stiff neck. I just started B-12 injections twice a week which I feel are helping with the fatigue and pains. I only started treatment in June so I realize I have a long way to go. As of now I will continue the treatment my LLMD recommends and put the MS diagnosis out of my mind. Thanks again for sharing all your knowledge with us.

 
Old 08-08-2004, 06:52 AM   #4
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Re: Lyme And Ms Diagnosis?!

Jenn100 I am happy to help

I am still being treated. I have been on both oral and IV antibioitcs. It is important to follow up with orals after being on IVs. Yes, it can take time to recover but you are on your way!

I am interested in the B12 shots. Did your bloodwork show a deficiency or was it given because it can help with fatigue? I have heard of others who have benefited from the injections.

 
Old 08-09-2004, 05:16 PM   #5
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Re: Lyme And Ms Diagnosis?!

Yes, the B-12 injections (methylcobalamin) are to help with the fatigue and the nerve-ending pain, i.e., in my neck, jaw and lower back. I inject 1 ml. twice a week. This was my third week and I do notice an improvement with the fatigue. I still have a painful stiff neck, shoulders and jaw area that my doctor has prescribed a compounded medicine for because Aleve and Advil are not helping at all. I'll be picking that up tomorrow. The B-12 once it builds up in my body should bring relief to these areas as well.

 
Old 08-09-2004, 05:25 PM   #6
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Re: Lyme And Ms Diagnosis?!

I am glad you are getting some relief from the shots. Did your bloodwork show a deficiency or is it that the doctor knows it is helpful for fatigue?
I am really interested in this. Thanks for any info you can provide.

 
Old 08-10-2004, 05:24 AM   #7
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Re: Lyme And Ms Diagnosis?!

No, my bloodwork did not show a definciency in B-12. My doctor said that this form of B-12 has been proven to help with fatigue and nerve ending pain in patients with neurological diseases.

 
Old 08-10-2004, 05:11 PM   #8
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Re: Lyme And Ms Diagnosis?!

Jenn100 thank you for this information I plan on speaking with my doctor about this.

 
Old 09-03-2004, 04:43 AM   #9
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Re: Lyme And Ms Diagnosis?! Jenn100

Jenn100

How has your treatment been going?

Your symptoms and previous (mis)-diagnosis for MS sounds very familiar.

TO

P.S. Ticker

What did your dr say about the B12?

Like I posted before. This all sounds very very familiar

Last edited by TICKED-OFF; 09-03-2004 at 05:26 AM.

 
Old 09-03-2004, 10:43 AM   #10
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Re: Lyme And Ms Diagnosis?!

One thing that has definitely helped me with fatigue is T3 for the thyroid as lyme can cause thyroid problems.

 
Old 09-05-2004, 05:30 PM   #11
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Re: Lyme And Ms Diagnosis?!

TICKED-OFF,

My treatments are going well. Thanks for asking. I'm finishing my third month of oral antibiotics and mepron for babesia. Last week I went for another MRI and the lesions on my left side are no longer seen and the right-sided lesions enhanced less intensely. No new lesions are seen.
The finding on this MRI report states "findings likely reflect a post infectious/inflammatory etiology given the patient's history(lyme diagnosis) though demyelinating disease has a similar appearance. Since I had not been diagnosed with Lyme when I had my first MRI back in May the diagnosis of MS was made. I will be seeing my LLMD in two weeks but I think I'm on the right track. I'm glad I did not start MS treatment like 3 doctors thought I should. I'll be speaking to the Neuro who wanted me to start treatment for MS based on my old MRI. I would like to hear her explanation of the new MRI and if it wasn't lyme then why did I respond so well to treatment in just 3 months? So scary to think how many people are in the same ms/lyme limbo diagnosis! Did you have a similar experience? Are you being treated? I take many supplements to boost my immune system which have helped tremendously. Take care.

 
Old 09-05-2004, 06:38 PM   #12
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Re: Lyme And Ms Diagnosis?!

Jenn

I'm happy to hear that your treatment is working.

Listen to this.... I printed out your previous post and read it to my wife. 1/2 way through she said why are you reading this to me I know whats been going on. At that point I told her I was not reading about myself I was reading about you. That's how similar our cases are.

I most likely have had Lyme for over 3 years and did not know it. It's difficult finding a good LLD. I'm scared to go to fast and not be sure of the treatment. This site has been great to help me along.

Best wishes
Keep me posted

TO

 
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