I'm pretty sure I have Lyme, and have had it for more than 10 years. I started having neuro type symptoms about a year ago.
I went to my Dr, and asked for a Lyme test. It came back negative. Not knowing much about the accuracy of lyme test. I wrote it off.
After seeing a small army of Specialist. The neurologist say that I have ALS. I have had neuro symptoms for a year, but I'm not experiencing the weakness like ALS.
Since I'm not 100% convinced that its ALS. I saw my Dr again, and talked about my situation.
She said she would treat me for lyme with no lab type diagnosis.
So basically we are going to see how I react to the meds.
She prescribed me 2 100mg of Dox a day for one month.
After reading here I know its not enough, and not long enough, but since I am basically wanting to see If I respond to the meds as sort of a diagnosis.
Will 200mg of Dox a day. Effect the lyme enough for me to notice a change?
If so, I'm going to travel out of state to see a real LLMD.
Posted by tonyg (Member # 16223) on :
You should be on 2 200 MG a day.. I was on 200 MG a
for 20 days and nothing happen. Still felt crapy.
If you have symptoms for a year, doxy might not
help. Other's can correct me, if I'm wrong..
Posted by sixgoofykids (Member # 11141) on :
See if she's open to letting you take 200 twice daily. You may or may not herx from either dose. Doxy did absolutely nothing for me ... it was like taking sugar pills. It works wonders for others.
I would go see that LLMD. It's worth it just to find out what you do have. They are very educated about various diseases, so if it's not Lyme, they should be able to tell you what it is.
Don't just accept your ALS diagnosis .... It's a terminal "Disease" with no cure. Something is causing it .... even if you have ALS symptoms.
Go see Dr. J in SC .... he's the closest to you and he's an infectious disease doctor, so he will get to the bottom of it.
If it's not Lyme, then you can always take your diagnosis and have a doctor closer to you treat whatever it is.
Posted by rachellemarie (Member # 16419) on :
Phil,
You might want to retest for Lyme using IGeneX labs if your doctor originally didn't go through them. I was tested too over a year ago for Lyme using I think LabCorp and it came back negative, so like you, I wrote it off.
Recently I was retested through IGenex, and it was very positive, so I am just now getting the proper treatment.
Posted by Cold Feet (Member # 9882) on :
Good advice from rachellemarie -- do consider learning about and getting more tests. To name a few ideas:
- testing for co-infections, a hugely overlooked issue, even in this day and age. There's a long and terrible list of very dangerous bugs that often are transmitted by ixodes
- consider the range of testing technologies too; e.g. visual microscopy, PCR
- plain-old "vanilla" tests from hospitals use CDC surveillance critera for assessing results; these are FAR different than DIAGNOSTIC CRITERIA.
Posted by feelfit (Member # 12770) on :
Phil,
See the LLMD as Six suggested. ALS is not treatable but Lyme is. I would get to a LLMD soon and get diagnosed properly.
Feelfit
Posted by Angelica (Member # 15601) on :
See a LLMD. Igenex has good testing but you still could have LD and test negative for it with Igenex.
An experienced LLMD will give you a careful clinical diagnosis. The first doctor I went to claimed he was a LLMD but did not do this for me. I honestly do not think the man had much experience and I am glad I went to a real LLMD and got a second opinion and another Igenex test.
Find a LLMD that more than one person recommends to you.
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