cis

Hey Twingirl,

You are in a tough spot. I see that you didn't post this on the lyme board. I know there is some controversy there, but you might try it anyway. You could get some good advice there. You can certainly ignore any extreme opinions.

I can't help you, really. I can only tell you what I would do. I would treat both the best I can. It seems like some people feel like you can treat lyme with supplements and diet. If you are no longer doing the antibiotics then just do a lyme protocol that you believe will help or has helped you.

I feel strongly that copaxone and LDN are not going to cause Lyme to worsen if you are still suffering from that. If you have decent insurance and can afford to stay on both copaxone and LDN, then do it. It may well be Lyme induced CIS/MS. If you at all suspect that Lyme may still be a part of your life then you may want to consider avoiding or limiting steroids.

My neurologist said to me that by the time you experience any MS symptoms (like when a flare comes on) the full damage has been done. By taking steroids, you are simply reducing inflammation faster. It won't actually treat or reverse any subsequent disability you may end up with as a result of the flare/MS damage. I hate taking the solumedrol and I usually don't take it during a flare. I just wait it out.

As for fatigue and brain fog, there are many meds that can help with this. You need to aggressively ask for symptom relief. If your doctor refuses then you need to ask the question why and perhaps go for a second opinion.

My first year of MS was hell. I was not sure I could continue my job. I was asking myself over and over if this was worth it. I would come home from work and crash for the rest of the day/night and then get up and go to work. It has gotten much better. I am working and dealing wtih a whole array of chronic/permanent symptoms. Everyone, however is different. I am just saying, that you may feel better over time. Meanwhile, treat symptoms. It took me well over a year to feel like I was managing life/work/MS symptoms.

Good luck. Keep me posted.

Hey Twin,

I get you there.  I get in trouble all the time for arguing over there.  I am very supportive of lyme and chronic lyme.  I get caught up in arguments (my own fault......it does take two to argue) over there when I hear that MS, ALS, fibro, RA, Lupus aren't real diseases- they are just untreated lyme. 

I get that we (the medical community) don't understand many things about our bodies and diseases, but I can't imagine that Lyme is causing all of those things. I have done my research too.  Colorado has one of the highest incedences of MS in the world and yet it has one of the lowest for Lyme.  Likewise, the South has quite a high incidence of Lyme and yet low on the MS spectrum. 

The two may be linked; a Lyme infection could well be a trigger.  But once MS is there, I do believe it to be  a mal-function of the immune system and not just the result of the infection itself.  Of course, these are just my opinions.  I certainly don't know for sure. 

I do feel in my heart that I do not have Lyme.  I don't think I ever had it.  I have never had flu type issues except for once when I had the flu.  I don't cycle every few weeks.  I don't have random fevers or joint pain.  I am missing some of the major hallmark symptoms that seem to be the essence of Lyme.  I feel foolish justifying my diagnosis but here I am doing it anyway. 

It does appear that you have either had Lyme, or you have it now, or you have both Lyme and MS or your Lyme triggered your MS/CIS. 

Just keep messing with symptoms and hope that you are already treating the diseases (copaxone plus lyme protocol). 

hey twingirl,
first of all i'm a twin too!!!! identical, you??

anyway I'm sorry for all you have been through. I logged on today for only the second time ever and felt pulled to write. I'm not a believer on telling anyone what to do so anything I say is only FYI. I just speak from my own experience.

I have MS. I was diagnosed 5 years ago and can trace symptoms back 9 years. I was diagnosed by a neurologist, but instead of going the western med. route for treatment I turned to a Naturopath Doctor (ND). Between metal detoxing my body and converting to a wheat-free dairy-free diet I have reduced my symptoms tremendously. I also take daily supplements from my ND, all natural, get foot baths and various homeopathic remedies as needed. I have had to adjust my life in that I can't tolerate extreme heat, so biking and working out to a sweat don't work for me anymore and can still be fatiquing. I started swimming (in cool water) and I do yoga. I relate to having to pace self, but i'm grateful that I can do what I do.

I'm sorry to go on, but I just wanted to add my 2 cents.

I wish you well and I'll check back.

you certainly have tried alot. Sometimes it would be nice to just NOT think about having to try something else, ya know??!.... I too eat mostly organic. I can eat goat and sheep dairy and this works for me. I'm not sure what EM protection is.

anyway I didn't mention that last year I had a Bio Meridian Scan done and this is what some of my treatment is based on. I feel it has cleared my brain so that I can think clearer, more than anything. But it's another approach to getting to the deep cellular layers by checking in with the body to see what it needs, and what layers can be detoxed. So it's more of a series of homeopathics. All cell level stuff...deep deep down.

so Google Bio Meridian if you wish.

Thanks for sharing

atwin, I found the card for the NP I went to and the treatment I had was called Bioresonance Balancing which I think is different from biomeridian.