Lyme AND MS????

Hi Leah,

I have Lyme and the same symptoms as you minus the headaches. My neurologist is monitoring me for MS because my spinal tap this past January revealed possible MS. I would caution you about doing the steroid treatment with Lyme. I started a steroid pack about four months ago which immediately made my Lyme symptoms much worse. I had to wean myself off after only a few days.   My LLMD advises me that it is much harder to heal people with Lyme that have had steroid treatments.

Given your family history with MS, I would recommend seeing an MS Specialist to evaluate your condition.

Hoping that both of us do not have MS.

Dear Don,

I'm sorry, but I must disagree with you. I will try to ignore the condescending tone of your latest post, which is difficult, since I was quite offended when I first read it. It seems to imply that I'm not able to question things, that I accept anything that's told me....nothing could be farther from the truth!

What you don't know is that two of my father's sisters died of lupus and they also had Hashimoto's thyroiditis as does one of my daughters, another of my daughters has lupus, my father had RA, my grandchildren have celiac disease, my niece has Graves disease.....in short, my family has a GENETIC PREDISPOSITION to developing autoimmune diseases. My aunts lived in Texas. I only saw them once in my whole life. I have only seen my niece a few times. I am 120% certain that not all of them have/had Lyme disease!

I've had celiac disease, psoriasis, and Hashimoto's thyroiditis (all autoimmune diseases) since childhood. I have only had Lyme disease for 6 or 7 years. Yes, it probably triggered my lupus, RA, autoimmune hepatitis, and fibromyalgia. But it is NOT responsible for the celiac disease, psoriasis, or Hashimoto's.

Celiac disease is a reaction to the protein found in wheat, barley or rye: gluten. This is an UNNATURAL addition to our diet in that we have only been consuming these grains for approximately 10,000 years. Prior to the development of agriculture humans did not eat wheat, barley or rye. So the cause for the AI disease called celiac sprue is the addition of gluten to the human diet. Period. End of story.

There is a wonderful doctor who is pursuing the causes of various autoimmune diseases (Dr. Fasano) and he has discovered that celiac disease can "open the door" for other AI diseases to develop via the cytokine zonulin...it causes so-called "leaky gut" syndrome. Please see the following very informative link: www.umm.edu/news/releases/zonulin.htm

It would be so wonderful if the lupus, RA, etc. go away when my Lyme disease is under control.....but I seriously doubt that this will happen. Because lupus, RA, etc are REAL DISEASES in their own right, and they exist with or without Lyme disease to help them along. Unfortunately. I know Lymies who developed AI diseases that did NOT go away when the Lyme disease did.

As to Hansa, I am still very interested in Dr. J's protocols, but when I look into the various treatments, it's very difficult for me to accept all of them because I am a scientist at a major research institute. All of my degrees, including my Ph.D., are in physics. And so many of Dr. J's protocols sound extremely unscientific. They scare me.

In any case, even the moderators on this forum will tell you that it is possible to have an autoimmune disease WITHOUT having Lyme. So it is also possible to have BOTH an autoimmune disease (or autoimmune diseases) AND Lyme.

I respectfully suggest that you may need to humble yourself (just a little around the edges), too.

Best wishes,
JoAnn

I am no scientist. And I can't write or explain like a scientist. But I read most posts on here and have researched everything I can find on Lyme. I have not researched MS, but have done a lot of reading about AI diseases and all the questions and controversy surrounding them.

There is one thing of which we CAN be certain. There is TOO much unknown.

Too all those who believe everything starts w/ Lyme, all I can say is that this is unknown. The 2 are so often linked, as are ALS, Fibro, CFS, Lupus, and many others. Researchers are still trying to figure out causative agents. Which came first. It is entirely possible that those of us w/ certain genetic predispositions make us vulnerable to chronic lyme disease. And it would follow that we are possibly predisposed to other AI diseases. MS could cause a person to be more suseptible to Lyme. Vice Versa.

It is certain that many of these diseases are misdiagnoses. Does not mean that ALL of them are. I agree that every attempt should be made to rule out Lyme when at all possible, simply because there may be much improvemt gained w/ abx.

I posted a paper written by my LLMD awhile back about HHV6. It was not about Lyme, although lyme was listed and included in this. This was a medical paper of which I could not understand very much. But it was clear that there are many questions and many studies continuing to try to find answers to the very things you are arguing about. HHV6 is one of those commonalities in most of these conditions. Where the HHV6 comes in and the part that it plays in many of these diseases is not yet known w/ certainty.  Which came first is still an unanswered question.

And we have gone thru this before, w/ several MS sufferers who stopped by here now and then, I'm sure, seeking more answers, as we discuss many of the same issues as they do. They became offended by those who insisted that they really had Lyme, when they already knew that they had MS.

Regardless of how many studies and stats some of us have read regarding Lyme and other AI diseases, there is not one of us here who knows the answers and the truth. They couldn't, because the medical researchers don't.

The truth APPEARS to be that in some people Lyme caused MS. (and Parkinsons, Fibro, CFS, etc). It is also entirely possible that a predisposition (meaning genetics predisposing the person to IA diseases) has rendered their bodies defenseless against Lyme. It is a fact that there have been people who got infected w/ Lyme and their immune system (possibly w/ the help of abx) took care of it.

WE only know about those who didn't.

The great part about this forum is sharing information, symptoms, theories, and shoulders. No one here is qualified to diagnose another person, (w/ the possible exception of a known tick bite and obvious bull's eye.) No one here is qualified to dismiss anothers' diagnosis.

It's important to note that when a new person comes here, listing their symptoms, or even their lab results, that we instruct them to see a reputable LLMD, because we feel that their symptoms and labs may indicate an avenue they need to pursue. That's about as far as we should go.

No one here is qualified to bash another's diagnosis or beliefs, even tho they may be right. Offering a different opinion is one thing,
but completely dismissing or bashing another's Dr is out of line, unless, of course, we are made aware of illegal or dangerous protocols, etc. And even tho too many Drs misdiagnose, we gotta be careful here. NONE Of us know some of the stuff the person's Dr knows about their patient.

I agree that we need to advise folks to research the possibility of Lyme. That is only sensible. Beyond that is our boundary. Even an LLMD on this forum would be remiss in diagnosing a person on this forum w/o having seen and investigated the person and all their symptoms.

I have learned a lot here and elsewhere. Even my new LLMD called me 'quite astute' regarding Lyme (based on my questions). Still doesn't qualify me to diagnose someone else or their diagnosis, their Dr, or their belief.

Let's come here to learn and to share and keep pushing forward. More good will come from discussion than putting anyone on the defensive, unless they are clearly out of line.

OH, and back to Ashely: It appears that Lyme can cause MS, or it can mimic MS, or it can be misdiagnosed as MS.  Unfortunately, it may be difficult to discern the truth for you.  But I think that if you have symtoms of Lyme or any kind of labwork suggesting the possibility of lyme, trying abx before trying treatment for MS might be warranted because the Lyme treatment might benefit you more than MS treatment. .  But this would be between you and your Dr.  If you for any reason don't have faith in your Dr, then go w/ your gut.  ANd you have plenty of research ahead of you.

There's my 25 bucks.