This Is MS Multiple Sclerosis Community: Knowledge & Support

Stabilo,
You are welcome!! Glad i can cheer you up. I thought i saw in another post that you are on Copaxone? My nero offered me that and i refused, i want to make 100% i actually have MS before taking anything like that.
One thing you should know is that the typical treatment for a MS attack is steroids and that is very bad for Lyme people. So think about that!
Yes i have read that Hughes syndrome can mimic MS, In come cases so can Celiac Disease mainly because it will not allow your body to absorb vitimans. Did you have your B12 checked? B12 defienicy can look exactly like MS.

Hi Stabilo,
I've gotten a lot of info and support over the last few weeks (and even more since finding out only last week about my own case) from the Lyme support groups out there. As is the case with TIMS and other informative groups, the moderators of these groups typically have sources for Lyme Literate MD's in your area and are happy to provide referrals. A few are located in the Yahoo Groups section and are specific to your area. Or check out: http://www.mdjunction.com/lyme-disease
or:
http://www.lymenet.org/SupportGroups/
for a listing of groups specific to your area.

There are also some Lyme groups out there that will also provide referrals. Check out this site for assistance with referrals: http://www.chroniclymedisease.com/llmd-referrals. You'll have to register on the sites in order to get the referrals.

My experience with "conventional" doctors has never been good. They are set in their thought process and the effort it takes to convince them that you may have Lyme can be better exerted at finding a good Lyme Literate doctor.

The problem is though, because of the political debate surrounding Lyme, these doctors typically do not accept insurance. They've found themselves caught in a web between insurance companies and medical review boards. Insurance companies alleging these doctors are committing malpractice because their treatment of Chronic Lyme patients doesn't coincide with the standards set forth by the CDC (in the US anyway).

But so far in my experience, it's worth the extra cost to get your health back. There's a lot that goes along with Chronic Lyme (heavy metal issues, candida, thick blood), that getting back on the right track takes a great deal of effort, but is worth it. It's far too common to not seriously consider when you receive an MS diagnosis. It scares me to think of how many more are out there like me.

Anyway, that's how I got started. Keep in mind too that according to the standards set forth by the National Institutes of Health, I have MS. But if I have MS, why are the antibiotics working? So don't be discouraged if conventional doctors are convinced you do too. It's up to you to find out your own answers. TIMS also has a forum dedicated to Abx (antibiotics) therapy, which is how I initially got started on the antibiotic road. If there's anything else you need, let me know, ok?

[url][/url][url][/url]

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

1hunter,
I had 7 negative Lyme tests as well. Here's the problem with the tests that use the CDC guidelines; they were never meant to diagnose. My sister is an environmentalist who's quite knowledgeable in this area and had explained their fallibility. If you have the time, do some research on the topic and you'll be amazed at how politicized and convoluted this debate has become. Also, here's a good independent site that explains the problems with the current testing (Western blot and the Igenex version): http://www.lymenet.de/labtests/brenner.htm [url]

What it ultimately comes down to is trusting your own instincts. Keep in mind I fit the criteria for MS... all of it. I have lesions, abnormal VEP's, abnormal LP's, all the hallmark diagnostic tools have pointed to MS. I've seen some of the best doctors on the east coast, and they all said the same thing. I just knew in my gut something was going on inside of me, and it wasn't my immune system gone awry. I could feel something was off. That, coupled with my older sister's Lyme diagnosis got me to thinking that maybe the doctors were wrong after all.

The Lyme Literate doc I finally went to did a gamut of tests, not just the Igenex. He looked at the "big picture", which is why he's Integrative. If you're not comfortable with the doc you're seeing, and you're questioning your diagnosis, there are many other options out there, you just have to dig a little. I can help you find referrals if you're interested. There's a great deal of support out there.

To me, trying antibiotics as opposed to the thought of injecting myself for the rest of my life made sense; I wanted to leave no stone unturned. But you have to be comfortable with your decisions, so please don't take any of this the wrong way. I just want to help raise awareness that there may be other answers out there for a lot of people diagnosed with MS. I'm proof of that...[/i][/url]

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

1Hunter I'm sure you make a special woman happy, or if not you should be Yes I am taking Copaxone, you're right about that. I have only been on it since October. I was extremely skeptical about all of the CRABs drugs at the time of my dx. I had a very serious, life altering relapse in September and friends and family were quick to beg me to try something. I gave in, not only for them, but I was extremely scared that I would never be back to normal, and it lasted the longest out of any relapse I'd ever had. I was bed ridden for almost 2 weeks and it even got to the point where I was expressing very negative thoughts to those closest to me about going on with life. So far the side effects aren't bad, but I'm still not fully convinced that I have MS, hence why I am exploring other "possibilities" for my symptoms.
I have only ever been on the steroids 3 times now, but I know I HATE them. Might I ask why they are no good for those with Lyme? Forgive my ignorance, but I'm just not as well versed on Lyme as I would like to be I really appreciate all of your info

_________________
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt

Jenf, thank you so much for the time and effort you put into finding these resources I will go with what you've given me for now, but I will be sure to come to you for anymore that I may require It must be a relief for you to finally feel somewhat in control of your symptoms, I dream for the day

Oh and 1Hunter I forgot to answer about B12, Sorry No I have not had my B12 tested (for a long while anyway), but I have a list of items I want checked for my next appointment which I have made for the New Year, That Jimmylegs has kindly suggested. 2011 is going to be a Great Year I can feel it, and I've promised myself to put my health before anything. Still extremely interested in CCSVI, but we'll leave that topic to another time lol.

Take care both of you

_________________
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt

Jen,

Thanks for the advice.... Sounds like you have a good LLMD, I'm going to keep my eye on Lyme and MS.... Right now i'm not too worried because of lack of symptoms. AND I"M VERY THANKFUL!! I have a appointment with a specialist in Milwaukee, he is going to review all my records and take a fresh look.You are very right about trusting your own instincts.

Stabilo,
I have a wife that i think appreciates me (most of the time :) What about you?

I'm not an expert but i have read that steroids help the lyme bacteria to thrive and reproduce. You should do some more digging into your diagnosis. It is hard to find a Dr. to run all those different tests, your general Dr. probably wont, and either will the nero. As Jen said the LLMD's seem more willing to dig deeper, not only for Lyme but for other things. Mine seemed to almost go overboard in testing and seling me suppliments. My insurance does not cover him and he racked up a huge bill in no time, but i do feel better now.
The first 2 tests do should do is D3 and B12, cheap and easy tests. and getting them to normal level will help you no matter what is wrong with you, but if you were talking to Jimmy, you are all set. She is the expert for supplements.
How long did it take to get all the tats? Do you have more than your arm?

Oh yeah, Jen thanks for posting all the links!!

Stabilo,
Steroids are bad for Lyme because they suppress your immune system, and this allows the Lyme bacteria to have a field day. The last thing you want to do when you have Lyme is suppress your immune system.

hunter1,
You're welcome (for the links)! I'm glad to offer any assistance that I can.

_________________
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Doxycycline - 09/10-02/10
Flagyl: 02/10-12/10
Bicillin IM: 09/11-03/12
CHRONIC LYME - 12/10

Remember, today is the tomorrow you worried about yesterday..

1hunter - Glad to know you have someone to support you through all of this Medical BS lol it can be a real handful at times! Yes I have a wonderful man who has been here for me more than I could ever hope for, we just celebrated 10 years on the 16th He gets frustrated sometimes, but I expect that......sometimes I'm a little harder to deal with (stubborn) for him than the MS haha. I have only the half sleeve on my arm, but really want to get another, just worried about pain from the tattoo bringing on a relapse (I've gotten mixed opinions on this from others) I'm just not sure if self inflicted pain is any different than unexpected, as far as relapses go? I had this one done pre dx, one session just short of 6 hours lol. I actually designed the lilies myself, and my artist added the water Do you have any???

Jenf - Thanks for the info on the steroids, now that I think of it, it makes a lot of sense lol. I tend to over analyse information to try and make up for the "brain fog" but it doesn't always work in my favor hahaha. I guess you could say that since all of my symptoms have appeared I have become more simple, which is a frustrating thing in itself, considering I used to read into things so well and get really in depth with topics of interest.....now simple seems to fit me a little better LOL, but I keep good humor about it, it's all one can do

_________________
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt

Yes, she comes to all my appointments and is generally good but, I do get ticked somtimes because she gets on my case for being on the computer too much (in her opinion) but 99.9% of the time i'm doing research about MS, Lyme, Celiac, and other possibilities. Also looking at what suppliments and diets can help, reading and learning about CCSVI, and what Dr.'s i can go to it i start having problems. So why should she get on my case about that? It's not like i'm on the computer looking at porn or somthing. Where would we be if we were not out own advocates Where would any of us be if we listened to the first Dr. we went to? (look at Jen)
No, i dont have any tats mabe someday.Yours look really good from what i can see .

1hunter, I hear you on the whole computer issue, my man drills me constantly, telling me I should just depend on Docs to do their jobs and look into things for me, I tell him If I did that I'd probably be in a wheelchair in no time. My family doc is pretty awesome and I must say unlike others I am lucky to have someone like that on my side. He's very open to alternative medicines and researching diseases for me, but I live in a small town so that seems to help a little. He even openly told me that if the tables were turned he would get the "liberation treatment." My neuro on the other hand is less than helpful, she insists she is 100% sure that I have MS and will not give it another thought.

I had to laugh at "So why should she get on my case about that? It's not like i'm on the computer looking at porn or something.".......not porn just complimenting women on forums just kidding. It felt nice to have someone (other than my man) tell me they think I'm pretty, as I've been awfully down on myself since my dx. I can only say without a picture that you are handsome on the inside Despite all the BS I deal with on an MS basis, I can honestly say that your comment has lifted my spirits the past few days.....thanks for your 2 cents

On another note I am on d3 as my vitamin d tested rather low, I currently take 4000 units per day. Up here we don't pay for the b12 or d3 blood tests (along with most bloodwork) So I am quite grateful for that! What is your regimen like as far as supplements??

Do you have any children?? I have 2 beautiful daughters that are getting extremely excited for Christmas!

_________________
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt

I was first dx'd with RRMS in Feb of '08 by one neurologist, then dx'd with chronic neuological borelliosis (Lyme) in Sept '09 after coming up positive on an Igenex panel and seeing an LLMD here in the local area. Then, saw another neuro at UT southwestern where my Lyme diagnosis was dismissed after a second round of ELISA's came up negative (Well...no shit Sherlock...I had been on abx for 13 months) and was given a diagnosis of PPMS. No help there.....

The mainstream crop of neurologists out there are only doing what they were taught in school. Its not Lyme.....its NEVER Lyme. What a crock!

Sorry if I'm coming across as bitter.....that's just because I am.

If given a choice between PPMS, which has no treatment at all, and Lyme Disease, which does....I'll take the Lyme Disease dx. At least then I can get some kind of treatment that might help.

After 13 months, my LLMD is pulling me off of ABX and putting me on a modified Cowden Protocol using Samento and Banderol and numerous detoxes to help with the herxing. This recent study proves that abx don't really kill the bacteria, they just drive the Lyme Spirochete into its L-form (cell wall deficient form), but the combo of Samento and Banderol whack borellia in all of its forms, to include the biofilms the bacteria creates to protect themselves from ABX and the immune system.

Here's the link:

http://www.townsendletter.com/July2010/sapi0710.html

I personally believe that borellia and its co-infections are the reason we have autoimmunity diseases running rampant in the world the way we do. I also believe that Lyme is actually weaponized syphylus. The bacteria are very, very close cousins and behave very similarly, except for the fact that syphylus has only one plasmid. Borellia has over 20!! This could not have happened in nature. Only genetic modification of the bacteria could result in this.

My suggestion....if some Dr. hands you an MS diagnosis, or ANY autoimmune diagnosis....you better get an LLMD in your stable of professional opinions FAST. Get on a course of doxy for 4 weeks and see if you herx. Or do what I did....self treat with Samento for a few weeks. I began herxing big time as I began ramping up on it. This confirmed my suspicion that I might have a systemic bacterial infection. I demanded an IGENEX panel be done and whalla! Lyme!

Its the most crippling, disabling, and stealthy bug known to man.....created by man, I say. Abx aren't enough. You need an LLMD that can formulate a comprehensive treatment regimen for your specific case.

Don't let the medical establishment push you around. Be your own best advocate.

Regards,

KenC.

My attempt at herbs and then a few drugs sent me into a major neuro attack that progressed my illness. An attack way beyond"herxing"- a few weeks of drugs and the last attack when on it for 9 months and seriusly progressed my disease.

When I look for references of recovery from long term teatment of abx I find few on the lyme forums and when I asked the LLMD I for references saw for those -his answer was to sit in his lobby and talk to patients-When I asked the leader of a lyme support group in my state he did not offer any either.

My question is- where area all the MS /neuro disease/lyme patients who have recovered. I know there are a few on his forum that say abx is working for themusing the cpn theory-I wish there were more cases of recovery to speak with to know if this treatment is the best for long term out come and health.

If you know of references/please let me know! I can't find many out there. I did find one to talk to and her treatment was horrific, long, and ended on a bizarre note with a tumor removal and then no more symtoms.

Did you LLMD offer patients who were willing to talk to you?

I hate to disagree with you, but Lyme is common in the US and very rare in the UK. There's no way that it causes MS in parts of the world where Lyme is unknown.
Hughes disease is part of the diagnosis tests in the UK now, but Lyme is so rare that it is usually looked for when all other tests have come up negative.
MS is too complex a disease to try to pin it down to one pathogen only. It is far more likely to have a causal link with Epstein-Barre or due to CCSVI. No one knows for sure.
Your hypothesis may well be true for the US and Canada, but not for other parts of the world. Sorry.