Lyme AND MS????

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Regular Member

Date Joined Sep 2006
Total Posts : 364
   Posted 7/16/2010 9:58 AM (GMT -7)   
Well I was diagnosed with Lyme back in 2006 and have received PICC and oral treatment - besides SEVERE anxiety and some gastro issues from all the antibiotics was finally feeling better last year. At the beginning of this year the anxiety got even worse (didn't think that was possible!) and then about two months ago started getting all kind of symptoms (some Lyme like and some newer to me). I saw my primary who referred me to a neurologist due to the neuro exam and also the severity of the headaches (was going to the hospital b/c migraine meds weren't working and they get so intense and last so long). I guess the main symptoms that bother me besides the extreme panic/anxiety are:
heat intolerance (everything gets so flared up in the heat or in the shower and after)
exercise or activity intolerance (same thing as above)
legs like "jello" or weakness
numbness/pins and needles in feet and legs and sometimes hands
tremor like in legs
hands will go numb
lightheaded feeling (not as extreme as years ago when I had vertigo but still enough to interfere with day-to-day activities)
pains in my legs sometimes
I will wake up at night with muscle spasms in my arms so bad I want to cry and it takes forever to go back to sleep
vice grip type circle pain around my chest/ribs that takes my breath away
headaches (can get really intense)
and more....

The neuro had me do an EEG (because a gentleman doing biofeedback on me had an abnormal result and mentioned I might want to check this out) - after a four day EEG that seemed okay. Then ordered an MRI - due my extreme anxiety and claustrophobia I am going to have to be "put out" next week for this. MS has been mentioned more than once (it was years ago also). My father has MS and seems to think my symptoms really are like his were before he was diagnosed (he also had no lesions in his MRI at first).

I am not sure what to think anymore - I don't know if I can even have a PICC line again or find a LLMD close enough that would give me one (because I know the orals didn't help enough) if it is Lyme related.

Does anyone here have both Lyme and MS - is that possible? If so another questions I know one of the main treatments for MS is steroids - how do you deal with that with the Lyme disease?

Thanks for reading - I pray everyone is doing well.

Take care! Blessings,

Regular Member

Date Joined Mar 2010
Total Posts : 230
   Posted 7/16/2010 1:34 PM (GMT -7)   
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.

Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 7/17/2010 12:31 PM (GMT -7)   
Hi Leah,

Unfortunately it is possible to have both MS and Lyme....Lyme can both trigger and mimic autoimmune diseases.

I haven't been diagnosed with MS because my brain MRIs have been clean so far, but I have many of the same symptoms. I HAVE been diagnosed with many other autoimmune diseases and am on prednisone and Imuran (both are immunosuppressants) for these. My Lyme doctor has mentioned wanting to wean me off prednisone, and my rheumatologist and other doctors agree, but everytime they lower the dosage my lupus flares up.

It's really really difficult to deal with both AI diseases and lyme at the same time because of the conflicting protocols. I truly hope that you don't have MS!

Take care,
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 7/18/2010 7:32 PM (GMT -7)   
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 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 causes so-called "leaky gut" syndrome. Please see the following very informative link:

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,
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Post Edited (nasalady) : 7/18/2010 8:35:23 PM (GMT-6)

Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 7/19/2010 4:57 AM (GMT -7)   
I wanted to add that my sister has MS. It took the doctors 3 years to figure it out and she was first diagnosed with Lyme. She was tested and had only 41 band. They then did a lumbar puncture and MRI and it was determined she did have MS.
She has many of the same symptoms that was listed in the first post.
She has been on daily injections for almost 3 years now and is doing fantastic. You would hardly know she has MS and has much more stamina than I do.
It is definately possible to have both Lyme and MS but just make sure you go to a great neurologist and get all the possible testing done. My sister had to go into Boston to finally get diagnosed and in treatment. It has changed her life tremendously and she is now able to function extremely well.

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 7/19/2010 6:57 AM (GMT -7)   
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.

Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/19/2010 8:07:07 AM (GMT-6)

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 7/19/2010 8:56 AM (GMT -7)   
Don, I am so glad to hear that I was wrong about your post! I did think you were trying to say that "Lyme explains it all", which is absolutely nuts of course! It was probably my "Lyme-brain" causing my misinterpretation of your post, I do have LOTS of neuro-Lyme stuff going on!

I do admit that I took the following personally:

"It is sad for me to see Lyme patients that claim to have been diagnosed as having both Lyme and some "other autoimmune disease". These Lyme patients understand the political issues surrounding Lyme Disease and its coinfections, but they remain duped as to the politicizing of these "other autoimmune diseases." They remain psychologically hooked on managing their neurological symptoms instead of seeking an overall effective Lyme trreatment. I am willing to bet that neither their Lyme nor their "MS" nor their "Lupus" will ever find resolution."

So you weren't referring to me as being "duped" in these statements? You weren't putting my "other autoimmune diseases" in quotes as if they were figments of my doctor's (and my) imagination?

Well I'm so glad I was wrong! I do tend to take things personally when it is not's one of my worst faults.

I myself try to always say that "Lyme can both mimic and trigger autoimmune disease". I believe, according to our current level of knowledge anyway, that is the most accurate way to put it. I agree that many cases of MS and ALS turn out to be Lyme in disguise, which is wonderful, because Lyme can be treated, even though it can be very difficult to eradicate! I just would like to caution you and others to not jump the gun and say that ALL cases of MS and ALS are due to Lyme. We just don't know that.

One thing you need to understand about scientists is that we are NOT supposed to rigidly adhere to the standard way of thinking....we are taught to "question everything". So I am MUCH MUCH more flexible in my thinking than you seem to give me credit for! :)

+Lyme, thank you so much for your very wise post! You said everything so much better than I could!
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

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