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Posted 11/19/2008 10:21 PM (GMT 0)
Hello there - I alway hear of the alarming similarities between Lyme disease and MS.  Can anyone tell me symptoms that are different? There must be some symptoms that stand out that separate one disease from the other.

Thaks for your time and have a nice day...

Gary

Posted 11/19/2008 10:50 PM (GMT 0)
Hi Gary: I have been on the MS/Lyme merry-go-round for a number of years. What they are telling me is that MS will look different on the MRI and is apt to show up on MRI and I am not sure about Lyme. I think fever is something that you will see with Lyme, but not MS. And of course, if antibiotics seem to help, you know it is not MS there. I still have not figured out if I have one, or both. You too??? D

Posted 11/20/2008 6:10 AM (GMT 0)
Hey Gary,
I was diagnosed with MS and it took 2 years after that for another Dr who happened to see me because my regular Dr was out of town, to refer me to a LLMD because of a few lingering symptoms that did not match with MS. (so glad he was out of town)

One big one was that I had these hive like spots (for 2 years) all over my legs, arms, back and bottom cheeks, they itched off and on and seemed to have no explaination by my MS, Dr. and he did not care to figure them out or to look at other options as to why I would be breaking out with them. It always sat in the back of my mind that I thought they were a sign of something else (the LLMD new right away what they were)

I also had (still have) air hunger issues, not related to MS but very realted to LD! My MS Dr. did not care about that either.

There were a few other significant things and I just kept making lists of my symptoms and comparing them to the MS info. My husband and I both new in our guts for a long time that it was not MS it just took us a bit to get to the right LLMD.

Oh, one more thing. My MS diagnosis has not been taken away, since I had Lyme Disease with co-infections for a few years before treatment, I was pretty sick and my 2 Drs call my diagnosis LD/MS because my LD manifests itself like progressive MS.

hope that helps a bit....
take care,
limberlostgirl
Posted 11/20/2008 1:41 PM (GMT 0)

Gary- My sister was diagnosed with MS a year ago after 3 years of not knowing what was wrong. They actually diagnosed her because she has lesions on her spine. She did have a lumbar puncture done and nothing showed up in it. Her main symptoms are numbness in her hands and pain/tingling.

They diagnosed her clinically because of the spinal tap showing nothing. She also has lots of back problems but they said it was sciatia. She has been on daily shots for a year now and is stable.

She went to a couple Lyme MDs who said it wasn't Lyme since she had a negative test. She lives in Mass so in my opinion she could have Lyme but seems to be doing well with her treatment. She has no other MS symptoms at all. In fact she is doing much better than I am.

So I guess you could read up on MS and see how they actually diagnose people and what they use to do that (labs, MRI). I believe when a person doesn't have the standard MS symptoms then you are diagnosed clinically like Lyme.

She had to go to the MS center in Boston to finally find out what she had. She actually was first diagnosed with Fibro..

Good luck.

Posted 11/20/2008 9:46 PM (GMT 0)
I too have bounced from thinking I had MS and other diseases. I was told MS would not hit your body all at once. For me, my major symptoms hit me all at once-pains for example just started to dart all around my body, when the twitching started, it was all over my body. From what I understand with MS it usually effects certain parts of the body for long durations and grows to other areas as other parts of the brain/cord are effected

For me, I also have EXTREME joint cracking and now grinding which is not associated with MS.

Posted 11/21/2008 2:36 AM (GMT 0)
You know this is so odd. My best friend came down with MS and when she came to stay with me she had good days and bad. Now after I have gotten lyme and my family and have seem the tricks that is plays I wonder. She did have a house in Texas full of cats. And she is so much like me it is odd. Her mood is also all over the place and she cannot drink etc.
Posted 11/21/2008 4:35 PM (GMT 0)
First of all, thanks for your posts - there does seem to be some differences between MS and Lyme as indicated in your posts.  But  am going to do some digging around to se what else I can find

But I do have a question that seems to make sense to me - and I think it was brought up in one of the posts.  If a doctor is having probloems in determining if the cause is from MD or Lyme, why then are antibotics not prescribed to see if it does anything....would it not kinda lean in one way or the other if the anitbotics do work?

Just my thought and question - have a great day - Gary

Posted 11/21/2008 6:33 PM (GMT 0)

Beau2006 said...
First of all, thanks for your posts - there does seem to be some differences between MS and Lyme as indicated in your posts.  But  am going to do some digging around to se what else I can find

But I do have a question that seems to make sense to me - and I think it was brought up in one of the posts.  If a doctor is having probloems in determining if the cause is from MD or Lyme, why then are antibotics not prescribed to see if it does anything....would it not kinda lean in one way or the other if the anitbotics do work?

Just my thought and question - have a great day - Gary

Hi Beau2006, You just asked the million dollar question!! "why then are antibiotics not perscribed to see if it does anything"

There are many reasons.

1. Most doctors do not know enough about Lyme disease to properly diagnose it.

2. The doctors have a phobia about perscribing ABX, god forbid the human race build up resistance to ABX.

3. Even if a doctor is knowledgable about LD, because of the CDC guidelines, they will not treat you with long term ABX for fear of loosing their medical license.

4. The Insurance company's do not want to pay for expensive long term treatment.

This is just my opinion.

Posted 11/21/2008 6:36 PM (GMT 0)
A trial of antibiotics is a good idea, but you would need to find an open minded doctor.

And the steroids sometimes given in MS can make the Lyme much worse. Steroids have made me much sicker. (Not an MS diagnosis- though they did rule it out) I was given steroid for dizziness mis-diagnosed as Meneire's Disease.

I had a bulls eye rash but negative conventional Lyme tests. The doctor said that even if the more sensitive Lyme test is negative (which is not uncommon in neuro Lyme), he will treat me with minocycline alone for some time. He said the test often comes up positive after this.

I wish you luck in finding answers. Don't give up.
Posted 11/21/2008 6:39 PM (GMT 0)

Its interesting.. I went to my PC yesterday (he for 5 months has run ALL sorts of test to see what is wrong), I told him I was seeing an LLMD -of course nervous he would lecture me. I told him that though I only tested pos 31 and IND on 34 41 the LLMD feels I have lyme due to my symptoms etc. I told him she gave me doxy, zith and flagyl and we will retest in 6 wks. He explained to me the doxy is fine--its used for acne, the zith is slight in terms of meds (they give it to peds patients) and the flagyl I just need to be careful with alcohol. He said he saw no issue in doing this for 6 wks. (I think it I dont test pos at this point the LLMD may stop the meds) even if I dont have lyme. He was very open about this, which was nice.


If I do test pos for more bands once die off occurs (hoping I do get more + so that I feel more assured it def is Lyme), then I plan on educationing my PC on this disease.....

Posted 11/21/2008 6:44 PM (GMT 0)
King1234, Any PC you can educate about Lyme is a wonderfull thing!! You go girl!! I am so happy you got a clinical DX. Take care, I hope you feel better soon :>)
Posted 11/21/2008 6:49 PM (GMT 0)
Me too! I just have part of me that thinks---what if its NOT lyme? You know, I like hard facts so I would love to see it all in the labs. Then I think back to all the other tests I have had, and my symptoms and calm down,then pop another pill ;)

Posted 11/21/2008 7:05 PM (GMT 0)
king1234-

That is great that your PC is so open minded. Can I have him?

I just posted a question on another forum about what do we tell our other, skeptical doctors.

Band 31 is so specific, it was used to make the vaccine. I think I may have already mentioned that. It can't hurt to say it again.

Good for you and I hope more bands come up. My doctor said he would treat for months before retesting to see if we get a positive test if mine comes up negative. I am lucky, though that I had the bulls eye rash (14 years ago!) and he said that IS my positive test.
Posted 11/21/2008 7:23 PM (GMT 0)

You are lucky for the rash. When I asked my pc if he has ever treated anyone w lyme, he said two people but they had a rash. I told him that less than 50% gets a rash and he was shocked.

If 31 is so specific why doesnt the CDC use it?

Posted 11/21/2008 7:24 PM (GMT 0)

Wow lots of posts, and that is great and interesting. Actually my doctor when trying to figure out what was wrong with me (I did get a dx for MS) But before all of this, he thought maybe I had a parasite, and gave me three/four weeks of Flagyl to take to rid of the parasite if in fact I had one.

Well, I did this antibiotic, and nothing imprioved....still had the dizziness, vision problems, nervousness, trembles (note - not all at the same time - one went and something else would happen).......so from what I am reading here - even after a bout of Flagyl, no improvment.

I have always wondered in my mind if there was a possilbilty of having Lyme..... however I am on a treatment called copaxone, and have been for a year. After about three months of taking this injection, I started to feel better, and today, I actaully feel pretty good. When I get tired, or exposed to heat, my fingers and hands tingle and go numb, and sometimes my head feels a bit dizzy, but if I lay down and have a nap, it goes away. So with being on Copaxone, and feeling pretty darn good, and seeing that I did do a antibiotic thing, I am starting to be more sure of the fact that I do have MS.

Gary

Posted 11/21/2008 7:40 PM (GMT 0)

Hi Gary. Did you have an MRI? I assume so or you would not be in treatment, right?

I am glad that you are starting to feel somewhat better

Posted 11/21/2008 7:48 PM (GMT 0)
Yes MRI, and I am not feeling somewhat better, I am feeling much better, almost back to my old self better after taking the copaxone, etc.....

So as i was saying, after taking the copaxone, and earlier being on a antibiotic regiment for a time that did nothing for me, it is beginning to become clearer to me that I do in fact have MS..

I am doing alot more research on this, and I am sure that as I dig deeper into the subject, more things should become more clearer that differentiate the difference between MS and Lyme.  Ive already spotted a couple of things mentioned in here all ready that has helped...

Thanks again to you all for your posts -

Gary

Posted 11/21/2008 8:35 PM (GMT 0)
king1234-

The CDC does not report Band 31 or 34 because it would mess up their surveillance of Lyme cases.

People who dod get the vaccine, but never had Lyme, will test positive for bands 31 and/or 34.

This criteria works great for the CDC, but leaves out some very sick people.

The labs use CDC criteria for diagnosis and the shouldn't. The criteria was only approved for the CDC's job of surveillance and reporting. This has gotten lost on the Labs and the doctors.

The CDC says Lyme is a clinical diagnosis and labs are NOT to be used alone to diagnose.

Gary- Good luck to you again! Gald the issue is getting clearer on your diagnosis.

Post Edited (kitty9309) : 11/21/2008 6:13:27 PM (GMT-7)

Posted 11/21/2008 8:58 PM (GMT 0)
Why wouldnt they say these bands are specific and that those who have had vacines would show positive? There are other tests out there like that, like rubella, varicella etc

Posted 11/21/2008 9:32 PM (GMT 0)
Good point. They could put a disclaimer in there.

From the Lyme Disease Association:"Even more puzzling was the omission from consideration of bands at 31 and 34 kDa, corresponding to OspA and OspB, among the most species-specific proteins of the organism. Often absent in early disease, Osps A and B tended to come into prominence as patients become increasingly ill. Although the absence of either of these bands from a patient's immunoblot did not rule out Lyme disease, their presence was hardly meaningless."

Bottom line is that in 1994, this disease became political.

Am I allowed to post a website here?
Posted 11/21/2008 10:01 PM (GMT 0)

See this is what I guess puzzles me and makes me fear maybe not lyme for me. Why would the CDC have this big consipracy to not help people with lyme? That does not make sense to me. Why would they not put this disclaimer if these were pos lyme bands as they have with so many other diseases? After all, they want to keep diseases under control. Then part of me looks at lyme drs and I think,well what do they and these lyme labs have to gain with these bands-oh, more positives and more treatment more money. Now DONT GET ME WRONG. I am sooo happy for LLMD and these labs, after all I am getting treatment for what could be lyme. BUT I have to say it raises some questions for me and my own dx--only because I like hard facts, like if I did have more bands per CDC positive-I would feel more confident.

Make sense? shocked

Posted 11/21/2008 10:34 PM (GMT 0)
I am not big on conspiracy theories, but there is something going on here.

The government should not be telling labs and doctors what they can and can't use for diagnosis.

The reason the 2 important bands were removed from the reporting criteria is so the vaccine could be pushed through and some of these doctors profited from it.

There is a conflict of interest. If I can give you a link, it explains it clearly without conspiracy overtones.

The CDC and FDA funded some of the research on all this. It would be like opening a can of worms for the CDC to admit what happened.

I do see your concern. Another reason for a negative WB or ELISA is that the patient is so ill that the antibodies are bound up in immune complexes that cannot be detected w/o first releasing them. Then the tests would be much more accurate.

Look into Dearborn Lyme bands 31 34 as a search since I can't post the link.

I really hear you. I had the bulls eye rash 14 years ago, have never tested positive (still waiting in IgeneX) and I still question myself.
Posted 11/21/2008 10:45 PM (GMT 0)

Its all so confusing. I will do that search--thanks for this info!

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