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momcat1011
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/9/2008 10:43 AM (GMT -6)   
Daughter went hiking in Scotland three years ago. about 3 weeks later she started vomiting at night ( early AM) 3-4 nights a week. This went on for 3-4 months. Then stopped and she developed recurrent: nausea, dizziness, fatigue, numbness in limbs and blurred vision. (listed in terms of frequency). She has an eroded esophagus and takes Zantac. She has periods of normal health ( 20-30 days) and then 2-4 days of illness. We have seen a number of doctors: Neurologist, gastrointestinal specialists, infectious disease, psychiatrist, sleep Doctor, education specialist etc with no diagnosis. All CBC are normal, she does not have h pylori. We recently had a LYME test done and it was ELISA positive but the Western blot was negative with only on one band at 58. Any recommendations how to proceed? Does it make sense to follow up with a IGX test for LYME? Could this be MS?? If this is MS are the recurrent periods of illness so short? What diagnostic test could help differentiate? GP want to follow-up with a look at rheumatoid factors? She does not have a rash or any arthritic symptoms. ANY suggestions??

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/10/2008 9:17 AM (GMT -6)   
Under Members look for Ticker and ask her for a list of recommended LLMD's.

With your daughters symptoms and multiple diagnoses she needs to see someone who is experienced with Lyme and co-infections. They will look at her history, her symptoms, previous diagnoses, do the appropriate testing, review her past testing, x-rays, CATS, MRI's, etc. It is so important to find out if she has Lyme and any co-infections and get started on treatment. If she doesn't have it then you at least know.

I went a long time without diagnosis - as many did here. I wish that it could have been different - it would have made a big difference in my life. So if any of us here can advise you, it would be to seek the best physician and give the treatment time to work. There is a lot of information out there and it can be confusing, especially when dealing with a daughter who has so many medical problems. You can save time and even money by finding an LLMD.

Igenex is recommended by many but there are other labs used also. Some labs are covered by insurance and others are not. Keep in mind that you can be negative with Igenex but still have Lyme or a co-infection.

Also, if you need more information here, keep posting because this is a busy site - and if your question is bumped to page 2 or 3 - people don't see it.

Wishing you and your daughter the best as you proceed.
Beth

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/10/2008 9:20 AM (GMT -6)   
Symptopms of MS overlap Lyme and vice versa. Wonder if they are in fact linked. could be i guess. MS could be induced by some other unknown "infectious agent."

Very scary.

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 11/10/2008 11:06 AM (GMT -6)   
My husband was diagnosed with many things one being ALS. His new doctor an LLMD believes it is Lyme induced MS. He has been clinically diagnosed with that and is being treated. Please follow up as the others have suggested. In the beginning he had no arthritic systems either. He had stiff neck and weakness in one hand. Many doctors and testing. Lyme induced MS can be cured. Godd Luck to you. Bev

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 11/10/2008 11:10 AM (GMT -6)   

I have been DX with both Lyme and MS it depends on what DR I see in what State. My MS has been very typical and easy for them to DX, I have also tested CDC Positive for Lyme 8 times. I think that was pretty easy to DX but my Dr would disagree. I believe I have Lyme and antibiotics have stopped much of the progression. But there are some symptoms that come and go.

I really wish I could find a local Dr who would look at both sides and treat me. I am afraid that will never happen. I have seen a couple LLMD and love them but can never afford to see them regularly and usually end up coming up with my own treatment choices. I am about to start a herbal plan. My body has done enough antibiotics for awile.

I hope you find the answers you are looking for. I was so surprised how much Drs don't like Lyme disease and look the other way.

To Masonmom, Is the treatment different for your husband with the MS.
 
Thank you.


Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007

Post Edited (Really Lyme) : 11/10/2008 10:24:38 AM (GMT-7)


masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 11/10/2008 12:11 PM (GMT -6)   
To Really Lyme: Treatment is still the same and we have just started a second round of antibiotics. First try didn't due a lot. A lot of herxing but not much results. We are now on 4th week of Rocephin IV and he plans to add another to the mix soon. What state are you in? so hard to find a LLMD here but have an appointment out of state the end of the month. Good Luck to you, Bev

momcat1011
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 11/10/2008 5:23 PM (GMT -6)   
IGNEX LAB indicated that there test is not specific for the species in Europe. Any advice finding a lab in the UK or Europe?

Interesting, I found an article that discussed the significance of the 58 kd band ( in the UK). Although, one band could be almost anything. She just finished a course of antibiotics for a sore throat. How long do you need to wait prior to a Western blot--Would antibiotics had any effect on this test? As her symptoms are mostly GI based no MRI, CT or neurological tests have been done. If fact very little testing has been done as they do not know what to test for as blood chemistry is normal.

What specifically does a DR need to find for a diagnosis of Lyme??
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