Multiple Sclerosis/Lyme Disease

[Thump]

I'm posting this as a heads up. I know people are misdiagnosed all of the time but my sister in law who is now 25 was diagnosed with MS approximately 4 years ago. It was a form that was remissive in nature. Her symptoms were dizziness, vision problems, etc. She had lesions on her brain scans, all very indicative of MS.

Well, 4 years later, she can't drive, can't walk without a walker or assistance, can't cut her own food because she shakes so bad and has no balance, to see her you'd think she was a drunk with Parkinson's disease. She also has trouble speaking. These aren't necessarily symptoms of MS. The lesions on her brain scan have increased 5 fold and now are showing up on her spine.

To see her deteriorate just tears your heart out.

My mom who is a nurse happened to read something about Lyme Disease and realized that many of the symptoms exhibited by my sister-in-law seemed to match and she also knew of a co-worker's daughter who was diagnosed with MS that ended up having Lyme disease after visiting Dr. Steven Philips in Wilton, Connecticut, a Lyme Disease specialist.

I found a website from the Canadian Lyme Disease Org. that gave like 70 questions and said if you answer yes to 15-20 questions you should be tested for Lyme, she answered yes to 38 of the questions.

So finally my in-laws, basically out of desperation, contacted Dr. Philips and went to visit him in mid-May and just got her blood test last week and she tested positive for Lyme Disease.

She just started a strong antibiotic yesterday, Dioxycyclene (sp?) or something like that. The good thing is, some of the symptoms are reversible and many of the lesions can disappear but we're just glad right now to have some hope.

So my main reason for this message is that if you know of anyone who may have been diagnosed with MS, make sure they get tested for Lyme Disease as well b/c often times they are misdiagnosed.

 

[-Laurinaitis33-]

I am sorry to hear that man, these are some great words of wisdom and could possibly help some people out, thanks for all of the information, and I wish the best of luck to you and your family.

 

[jwinslow]

Sorry to hear that. I know first hand how bad both can be (Mom = MS, Sis-in-Law = Lyme).

Thinking back about the symptoms of both, I can see them making that mistake.

 

[Buckeyeskickbuttocks]

Sorry for that, Thump. Thanks for the info too. Wish you could have posted this knowledge sooner, for had you be able to do so, your sister would be in a better predicament by now.

 

[Gatorubet]

Sorry to hear that. I know first hand how bad both can be (Mom = MS, Sis-in-Law = Lyme).

Thinking back about the symptoms of both, I can see them making that mistake.

Trouble is, once the initial diagnosis is made, it is hard to get docs to look at the patient's condition with "new eyes"...

Shame they couldn't have caught it earlier. I hope she recovers. I'll keep her in tonight's prayers.

 

[Thump]

Trouble is, once the initial diagnosis is made, it is hard to get docs to look at the patient's condition with "new eyes"...

Shame they couldn't have caught it earlier. I hope she recovers. I'll keep her in tonight's prayers.

Dr. Phillips said that doctors diagnose with a very close-mindedness. Two of the drugs they had her on make depression worse and trembling worse. It's amazing that a blood test for Lyme isn't given for anyone with brain lesions or MS/Fibromyalgia symptoms.

 

[Clarity]

Thanks for this, Thump. Your sister-in-law's plight sounds very familiar. I can't claim I suspect Lyme disease for myself, haven't even been able to confirm the doc's suspicions of MS, but yours is another stone to turn over in the quest to understand.

Medicine can be very single minded when it comes to diagnosis (or lack thereof). Once it locks in on something, it's hard to get anyone to see it in a different light. Which is very unfortunate, as the result can be a lot of otherwise avoidable suffering.

Hope she's already seeing improvement.

--edit--
Amusingly, I'm forced to answer yes to over 50 (not a joke) of the quite general questions found at the URL below (not sure if this is the site you found). I had Jo/Longwood run through it without giving her any qualifiers or comments, and she gave yes to 48 for me. Unfortunately, while so much of that can certainly be suggestive of Lyme, it can be explained by a lot of other issues as well, and/or likely by some we don't know or fully understand. That said, I'm going to pore through my records today to see if we ever tested for Lyme. I don't believe we did, although the onset of my issues started with flu-like symptoms immediately upon returning from a trip to Ft. Wayne, Indiana on or around Jan/Feb 1998. I don't know enough about ticks to say I couldn't have been bitten during a mid-west winter, but it seems unlikely even though we stayed in a decidedly woody area with some wildlife presence, and I had spent a good amount of time cleaning up and working outside. Nonetheless, worth checking out for myself, and I think your general notice to others is a great one.

Lyme Disease Symptoms, Lime Disease Symptoms Lymes Disease Symptoms early and chronic late stage ( lymes disease lyme's disease lime disease limes disease incorrectly used )

--edit2--
I've never been tested for Lyme. Sort of funny. I've been playing the failing health game for too long to get excited or hopeful about any potential diagnosis. There are too many possibilities and too little opportunity right now to investigate to bother. I will say that I'm going to try and arrange for a Lyme test soon, just because it's relatively easy and it would be silly not to.

 

[coastalbuck]

Sorry to hear it Thump, but maybe you can hope now. Best of luck to her, you, and the rest of the family as she begins recovering.

 

[DEBuckeye]

That is great information, Thump; thanks for sharing it.

One of our dogs was diagnosed with Lyme disease a while back. Now, I'm not at all trying to compare my dog's problem with those of any human being, but rather to comment on the "reversability" of symptoms, as Thump explains. She had lots of joint pain, limping, upset stomach, appetite loss, etc... The vet gave her a course of antibiotics, and it was amazing to see the changes in her. I read that Lyme, if caught early, is over 90% curable in dogs with the right treatment.

I guess it just reinforces Thump's original point, which is to get checked early and begin treatment asap.

 

[Taosman]

After living in Connecticut for almost 30 years I'm very familiar with Lyme.
It can be deadly if misdiagnosed. Or in combination with another disease.
It scared me off mountain biking in New England.
Hopefully, with a strong anti-biotic treatment much of her disease can be reversed. It could take some time.
Best wishes to her for a full recovery.

 

[BB73]

Lyme disease was referenced in the Wyatt Sexton thread a while back, starting on page 3, after the FSU QB was diagnosed.

bp.fsu-qb-wyatt-sexton

 

[OSUsushichic]

When we lived on the South Shore, we were picking multiple ticks off our dog every day. It was disgusting. It's kinda odd that they have a Lyme disease vaccination for dogs but not for humans.

My best friend and her husband were diagnosed a few years ago. She recovered quickly, and he is very slowly recovering (it was a few years of illness and multiple doctor visits before he was properly diagnosed), but he has a long way to go. Lyme is really scary and so damn hard to diagnose. And one thing I didn't know about it until my friends were diagnosed is that it can be transmitted sexually.

 

[Fungo Squiggly]

Does the sister-in-law have any proclivities towards a particular style of sexual intercourse?

 

[Thump]

After living in Connecticut for almost 30 years I'm very familiar with Lyme.

Connecticut is the worst state for it and New England as a whole is the worst area in the US. This Dr. Phillips in Wilton has been a godsend to our family.

 

[Thump]

Clarity,

That's the site I stumbled upon that I think really opened my in-laws eyes.

When she was first admitted to the hospital and she was diagnosed with MS, she was sick vomiting for about 3 weeks and was having vision trouble.

She never did notice a tick bite and many people with Lyme never do.

The test for Lyme doesn't test for Lyme but the antibodies that fight Lyme. Dr. Phillips had her send her blood to a lab in California that he trusts and also to one in New Haven, Connecticut.

They came back saying she tested positive for Lyme.

Lyme disease is like having a poison drip in your body.

If you don't mind me asking, do you have brain or spinal lesions that show up on scans?

Thanks for this, Thump. Your sister-in-law's plight sounds very familiar. I can't claim I suspect Lyme disease for myself, haven't even been able to confirm the doc's suspicions of MS, but yours is another stone to turn over in the quest to understand.

Medicine can be very single minded when it comes to diagnosis (or lack thereof). Once it locks in on something, it's hard to get anyone to see it in a different light. Which is very unfortunate, as the result can be a lot of otherwise avoidable suffering.

Hope she's already seeing improvement.

--edit--
Amusingly, I'm forced to answer yes to over 50 (not a joke) of the quite general questions found at the URL below (not sure if this is the site you found). I had Jo/Longwood run through it without giving her any qualifiers or comments, and she gave yes to 48 for me. Unfortunately, while so much of that can certainly be suggestive of Lyme, it can be explained by a lot of other issues as well, and/or likely by some we don't know or fully understand. That said, I'm going to pore through my records today to see if we ever tested for Lyme. I don't believe we did, although the onset of my issues started with flu-like symptoms immediately upon returning from a trip to Ft. Wayne, Indiana on or around Jan/Feb 1998. I don't know enough about ticks to say I couldn't have been bitten during a mid-west winter, but it seems unlikely even though we stayed in a decidedly woody area with some wildlife presence, and I had spent a good amount of time cleaning up and working outside. Nonetheless, worth checking out for myself, and I think your general notice to others is a great one.

Lyme Disease Symptoms, Lime Disease Symptoms Lymes Disease Symptoms early and chronic late stage ( lymes disease lyme's disease lime disease limes disease incorrectly used )

--edit2--
I've never been tested for Lyme. Sort of funny. I've been playing the failing health game for too long to get excited or hopeful about any potential diagnosis. There are too many possibilities and too little opportunity right now to investigate to bother. I will say that I'm going to try and arrange for a Lyme test soon, just because it's relatively easy and it would be silly not to.