was diagnosed with als 2003.symptoms 1st started with left leg dragging,especially in the cold in pa.did not think of lyme until 2004 when i told someone that i had a red rash all over the back of my body=just like the pictures shown on lyme sites.symptoms continue to get worse:loss of fine motor skills in left hand/arm;balance problems-must now use a walker to get around;legs feel like they are there but don't move easily.loss of muscle mass/weakness n left arm and legs.i see dr bur..in west chester-he thinks i had lyme all along.dna and igenex tests come back inconclusive.was on flagyl,cipro and biaxin in dec. and felt like i had mono-was so sick.am on doxi,biaxin and flagel this month.dr.b wants to have a spec scan and put me on 3-4 months of iv as he states we must go at this aggresively.my insurance won't pay for 4 months of iv..i am told not to give up,but i worry that the lyme may be too far gone to allow me to walk normally again or live.any thoughts,please..
[ 28. January 2006, 12:18 PM: Message edited by: miker ]
Posted by groovy2 (Member # 6304) on :
Hi Miker
I have been sick 20yrs-- After some treatment I am feeling perty good-- You can too--Jay--
Posted by lou (Member # 81) on :
There are more expensive and less expensive ways to do IV. Some drugs are now generic and therefore less expensive than in the past.
There are also freebie drug programs if you qualify. This would not cover the supplies, which are considerable.
Finally, ask about IM bicillin instead. Might not be what the doc wants to do, but you could ask. And it might not work as well, but some people have found it is better than pills, and less expensive than IV. Maybe you will be one of those people.
Have you talked to any of the PA support groups? They might be able to explain all this better.
Posted by David95928 (Member # 3521) on :
I went undiagnosed and deteriorating for 12-15 years. My treatemnt started three years ago and, I have to say, the first few months were one long herx. These days, I'm pretty good with occasional days on mild malaise.
Regarding your treatment, has your doctor brought up Bicillin LA shots. He pretty much pioneered using it for Lyme and it is increasingly popular. It's also FAR less expensive than IV and your insurance might cooperate. As a point of information, it costs about one tenth of the U.S. price on the international market. It's a Korean War vintage drug and made in many countries. There have been quite a few threads about it on this site, mostly positive, and you can easily use the search function to see what people have had to say. You would probably also need an oral.