pmbenb83 said:
Hi Jamie. Thank you so much for digging up the old posts and sharing them. My husband is having a lot of the same symptoms including night sweats. As far as I have read, night sweats aren't a symptom of ALS, right? He was hospitalized back in April but was never diagnosed. The doctors said that he either had a Tegretol reaction (given to help the fascics) or a tick bite. Whatever it was attacked his liver. He was given 3 days of IV antibiotics and started getting better. All of his tests for Lyme, Rocky Mountain Spotted Fever, etc. came back negative. I've asked his neuros repeatedly if he should be tested for Lyme again, and they say no. His spinal tap in the hospital was for meningitis. Should they do another one for Lyme?
His symptoms to date: 2 abnormal EMGs, right arm weakness, right shoulder atrophy, right bicep atrophy, fascis all over, severe muscle spasms all over after physical activity, night sweats, fatigue, urinary frequency, elevated cpk, all other blood work negative.
His doc called from UVA last week and said his last blood work was negative; GM1 and protein electrophoresis. I mentioned his hospitalization in April and how it seems like after that time he has gone downhill and questioned the antibiotics given then. The doctor said that he could take antibiotics for bronchitis or sinus infection, but if he ever needs to go to the hospital or have surgery to contact him, because there are certain antibiotics that they do not want him to have. Do you know what this could mean?
Any information or suggestions would be greatly appreciated. We are both very scared and feel we are getting the medical run around.
Thanks again.
Pam B in Va
What you do is find a LLMD, go on
www.lymenet.org, get into the flash discussion part, in there, there is a "seeking a doctor" section. Someone will PM you a LLMD in your area, of not, post your request on the "medical questions" section.
YOu can get him tested at IGENEX, its $450 for the test he needs, but you need a doctor to sign the orders. Get your GP to sign them, you handle all the paperwork and mailing the bloood, this way, all he has to do is sign the orders.
Go to
www.igenex.com get the 6050 complete lyme panel. It's the ELISA, IGG WB, IGM WB, DNA. If any of these come positive, if he has the lyme symptoms, he needs to be treated. You will have to find someone to draw the blood, 4 tubes, separate 2 of them in to serum. Send the 2 blood and 2 serum via DHL or FEDEX OVERNIGHT Express! The blood should be drawn on a monday or tuesday and shipped same day, this way the blood does not sit in a lab over the weekend.
This is the best lab according to all the lymies. They are just like the PALS, they know the ropes.
As far as treatement, you need to get him on IV Rocephin (Ceftriaxone), it's apparently doing well in clinical trials for ALS patients and it's the best treatement for lyme, so, you kill two birds with one stone. Your LLMD, you neeed to tell him you want to go straight to this, no orals!
FYI - I just started the Rocephin today, we'll see if i really have lyme.
Rgds,
Jamie