Could MS actually be Lymes..I'll explain

[ewford]

OK, before I get FLAMED for this, I will state that I, like so many sufferers here have/had hall the symptoms of MS, Lupus, CFS, etc.  I was "pidgeonholed" and told that I had MS and my dr wanted me to start on MS medications that were only symptom relievers.  As I researched more and more, I discovered that there has been a EXPONENTIAL EXPLOSION of autoimmune diseases that really took off after the early 90's.  Doctors have no explanation for it.  Why? I asked.

After doing extensive research I started to notice that Gulf War Illness and MS, Lupus, CFS, Fibromyalgia and many AI diseases are exactly alike with overlapping symptoms.  I started interviewing soldiers and spouses that were perfectly fine before entering the service, but now soldier and spouse alike are ill, with their children ill as well. Symptoms range from head to toe ie: Chronic headaches, eye pain, ringing in ears, stiff neck, sore throat, swollen Lymph nodes, joint pain, muscle stiffness, fatigue, shooting or throbbing pain anywhere, sore knees, ankles, bowell issues, heart pallipatations/pain, stomach issues, Women usually have ovarian/uterine issues.  Brain plaques, spinal fissures and a general unwellness feeling. (Am I forgetting anything?)

  The possibility of this being an chronic intracellular bacterial infection is extremely possible considering that it has been proven there were bacterial agents causing illnesses.  Many Gulf War soldiers and their families have Myco and Mico plasmal infections; bacterial and fungal infections that are systemic.  Lymes sufferers not only have these mycoplasmas but also coinfections that are exactly alike MS, Lupus, Fibro, ALS.  Once these bacteria enter the bloodstream, they go wherever your blood goes (everywhere-affecting all organs and tissues, including brain)

  Since everyones immune system is different, would it not be conceiveable that symptoms might vary from patient to patient?  Would it also not be conceivable that a dr would rush you in and out and give you a quick diag so he could see the next patient?  If your Dr ordered a Labcorp/Quest test for lyme disease, did he tell you that the tests are virtually 90% unreliable?  Those tests were designed to look for ONE type of Borrelia bacteria(there are over 200) and ONE type of form this bacteria exists in. Borrelia exist in 3 different forms.  They are pleomorphic-shape shifters.  Mycoplasmal, spirochetal, and cystic forms.  Look at it this way.  I will use an car analagy.  the test looks for a Honda element, but it sees a Accord, or a Civic or a Element depending on when the blood test is taken. And if you are taking any meds at the time of the test, it will be neg.  make sense?  Since this infection weakens your immune function, your immune system will never (rarely) show antibodies to it.  The infection is hidden INSIDE your cells.  This bacteria is truly bizzare but has been proven to exist in all forms.

  Youtube a video of Dr Lida Mattman and her work w/ Lymes bacteria and "stealth pathogens"  She was Harvard trained, PHD, Nobel Prize Nominee in Immunology/Virology and taught for over 35 years.  researchers too cadaver brain samples from Yale and sequenced them for Lyme Borrelia Burgdorferri bacteria.  The cadavers belonged to ALS, Lupus, MS, Sjorgens, hashimotos, etc diaged patients.  75% of the brains tested pos for the Lyme bacteria.


I have more info.  Please ask any questions, but keep the flames to a min.  Thnx

[sw_in_nj]

Western blot is for protein, not DNA. Some proteins that come from different DNA sequences can be similar enough sequence-wise or structurally that they can be recognized by an antibody made to just one of them.

[Ricobord]

I know it's been awhile since your last post, but I thought'd I'd respond regarding your little girl.  I have tick borne diseases and I would strongly encourage you to take her to a tick borne disease specialist, which might be an LLMD.  

Realistic estimates put the occurrence of the bull's eye rash for Lyme at about 50% so absence of the rash by no means excludes Lyme. She could easily have a tick or other vector borne disease and you don't want her to go untreated for fear of permanent damage. (Note:  Cat Scratch disease/Bartonella is also transmitted by fleas & lice, and probably also by ticks.)

Columbia University has a good overview of tick borne diseases.  You can check them out at  http://columbia-lyme.org/patients/tick_borne.html

Good luck!

[CvilleMamaOf5]

I liked the optimism of your post although maybe a little too much information at once! lol. I have been going through the dx process of MS for about 5 years. They're finally seeming to know that it is MS but are still wanting more tests to be sure.

On the other hand, I've been dealing with my 2 year old daughter who I brought to her doctor with a lump on the back of her head were it meets her neck. Her doctor stated that it was a sebaceous cyst and removing it at her age seemed a bit too much since they're more bothersome than harmful.

A couple days later, she formed another lump on her skull just above where the 1st one was. I took her to the ER since her doctor's office was too busy to return my calls and an appointment is made a month out. The ER doctor said she had lymphitis. Although, the ER doctors here are quick to dx and not even look, as this doctor did. He said he didn't need to look at it, he knew what it was.

My daughter has a slight allergy to bug bites, mainly mosquitos and gnats. Which is hard to deal with since we live in florida near water and the flying insects are unfortunately sometimes unbareable! The doctor stated that she was just having her "usual" reaction. Her reactions to bug bites consists of bumps that look like bug bites. She'll get one bite and it'll look like she has 10. So, during the summer months she cant stand to be outside without a ton of insect repellent. (Most of which are not good for you!)

Every time we go to my mother in law's house, it seems the ticks are attracted to her. She'll come home with several on her. These ticks are very hard to detect and remove completely. They have a sort of numbing solution that they secret when they bite so you usually don't even know that it's on you until you see it, and by that time it has burried it's head in you. I know that she has had several that we didn't notice for days.

I bathe and look her over EVERY time we go to her house and sometimes I miss some. She had one that had bitten her head about 3 days before I noticed the lump on her head. They put her on an antibiotic for "cat scratch fever" even though we are rarely around cats since my husband has an allergy to them.

Even though I'm not a firm believer in giving antibiotics without a firm reason for taking it, I gave it to her and there was no change. She went in for an ultrasound of her head and they determined it was not cancerous. There was a blood test that showed no infection, however her blood was discarded and not tested for anything other than an infection in her bloodstream. I thought testing for low white blood cell counts and all of that was routine, I guess not at this hospital...

I brought to her doctor's attention that she has been bitten many times by ticks that are known to carry lyme disease but she keeps overlooking that. She gave her another antibiotic and after a few days of using it she continued to have nosebleeds. I took her off of it and the nosebleeds stopped.

She had one day where she seemed to be unaware of what was going on around her. She would just fall out of a chair, be standing and fall backwards, not respond when you say something and then think you're weird for questioning her. She often complains of headaches (which I've had a history of since I was a child). She also has been complaining that her eyes burn like there's a fire.

Geeze, I'm sorry to have written so much but this brought a lot of questions to my head.

She's only 2 so it's hard to completely understand what she feels. She talks but doesn't know fully how to explain things. Her doctor seems to think that this is something we don't need to worry about. Can neurological issues be hereditary? How do I determine if she has developed Lyme disease? She's never had the "bull's eye" rash. But to my understanding most people don't get that the 1st time they're bit and many don't get one at all. It's been 3 months and the lumps are still there. For about a week she would get one every day it seemed. I believe we are up to 5 lumps on her head and have gotten bigger since they came up but have not changed within the past month...

I'll end this here and give you time for a response. lol. Sorry it's so long but I have a lot of concern that the doctor's don't seem to be worried about. Thanks for sharing and reading.

[ewford]

No ma'am, missdiagnosis are happening more frequently with the  rise of the Atypical.........AI disease.  This was the reason for the posts.  I apologize if I came across as rude, it just seemed/seems that are so many looking for answers when their tests were borderline, a little positive but got an atypical diagnosis.  Once again I'm sorry if I ruffled anyones feathers, this was only meant to look at new possibilities/explanations when tests were ambiguous or MS'ers that are experiencing symptoms that might not fit the criteria.  Olive branch extended.

[Sumanadevii]

The feeling I get from ewford posts is a disappointment.  Like she/he is one that the dx was taken from and now wants it taken from everyone.  I guess having lymes isn't a big enough disease to brag to friends about...

To Ewford, MS is a horrid awful nasty disease.  Be glad  you don't have it and move on.  Enjoy the freedom.

[fortywhat2]

well said Lisa... well said!

[LisaJF]

I do not doubt there is some validity in your research and statements.  I think you have served your purpose in educating people to question the tests that are done in ruling out Lymes and the possibility of the Bowen Q-Ribb test in conjunction with the Western Blot.  I am sure the ID or Doctor would not poo-poo the idea of any patient bringing this to their attention.  

In fact, perhaps people would feel better if they knew there were several tests that can eliminate the possibility of Lymes.  

Thank you for your time.  

You've served your purpose in your thread.



Lisa

[fortywhat2]

I had written a long "defending myself" message and thought, hummm  nope not going there! I, like Shell am an adult and don't appreciate the way you feel you can question my diagnosis... And just for the record in no way have I been "snide".  I hope you find the answers you are looking for so that you can accept and move forward.

[ewford]

I have met several people that had pos Lymes, bullseye rash, got the 30 day ABX, and were told they are cured.  Now now these  women have RA, AI issues, Hysterectomies, lesions, cancers,etc.  The CDC approved 28 day regime is not enough to clear this infection.  That is a sticking point between the CDC and doctors such as Burrascano and Jemseck that are ACTUALLY treating this disease.

Fortywhat, now you are being snide.  I am not.  Did you get tested for coinfections, or just Lymes?  Bartonella, Babesia, Erlichia, Rickettsetia can also be transmitted.

  As far as family history, look at the information being discussed about bacterial infections being passed placentally or through mothers milk as per Dr Lida Mattman (YALE PHD, Nobel Prize nominee, immunology/Virology professor for 35 yrs)

[fortywhat2]

Hey Alli,
As I said previously, you can have many autoimmune disease... Lyme should have been treated with doxycillian (unless allergic) for a min. of 30 days... as I said I live in an area of high lyme disease and I worked in the medical field so I use to call in meds often.  I hope you've found a good primary care physcian that will refer you out to the necessary Dr's... I could give you a list of great dr's in my area but I'm not familar with your area... word of mouth is usually a good place to start and interview your dr's ask for a "get to know you appt" before you decide on a dr... Good Luck and if I can help shoot me a message!
Debbie
~live as if all your dreams came true~

[sllowe]

Hi Alli,

I'm sorry your question got a little lost in this. Like mentioned by FortyWhat, it's very possible to have both.

To answer your question, I suggest you absolutely re-visit an ID doc. Where Lymes is concerned, it's important to be in the correct care as I'm sure you know.

If you have trouble locating one in IL, hit me up privately, and I'll do some digging for you.

-Shell

[fortywhat2]

Oh and if I forgot to mention... I worked in the medical field for years before having to retired due to cognative issues!  I did my research, we all do, it's a coping factor in the beginning of how do I deal with and accept what is happening.  I think the difference here is most of us kept our research tantrums to ourselves, we've all been.  Good luck in your quest!

[fortywhat2]

My neuro is an MS specialist in Boston, MA... did Lyme tests on spinal fluid and blood draw... my rheumatologist specializes in Lyme disease... all lab test go to specialized lab... I live in an area of MA that Lyme runs rampid...  My primary only does western blots for Lyme and sends to speciality lab in CA Hummmm  guess their diagnosis of neg Lyme is accurate!  I have been tested for lyme more times than I can count.  My MRI shows lesions... my spinal tap shows bands... my memory, processing speed, and word finding are severly diminished... I am positive for Hashimoto's Disease, Fibromyalgia, Osteoarthritis, & PPMS all confirmed by either lab tests or specialists in that field, hummmm  I think I have autoimmune issues.  I have family history of severe RA (mom), graves disease (sister), hypothyroidism (sister and mom) and severe osteoarthritis (mom).  So... I believe my diagnosis and cope with it daily despite your research... Once you learn to accept and cope you begin to live again and that's what's important to me :)
Debbie
~live as if all your dreams came true~
ps... I have PPMS, no meds, so no one is getting rich off me, just saying!

[ewford]

Here are Dr Nicolsons credentials.  They speak for themselves.  I would trust his judgement over any doc in a box that has not researched this.

http://www.medhelp.org/doctor_profiles/show/642304

[ewford]

Here is a related discussion answered by EXPERT Dr Garth Nicolson.  On IBS and MS among other symptoms.

http://www.medhelp.org/posts/Autoimmune-Disorders/Hourly-Migraine-Concern--Ms-related-Incontinence/show/1455290

[ewford]

Yes, the Igenex tests use the Q-Ribb Bowen method.  it is THE most accurate test.  So accurate, that the goverment says the tests must be rigged.  They have submitted double blind samples to check for accuracy.  The Bowen Q -Ribb test has passed every time.

[ewford]

The Western Blot PCR for Lymes looks for the DNA sequence of ONE PARTICULAR TYPE ( caps for emphasis) of Borrelia, not any of the other known species.  It might say inconclusive, I would get further tests done to confirm Borellia, and coinfections which increase the morbidity.   You really also should look into viewing the documentary "Under Our Skin" as it will open your eyes to all the possible manifestations and missdiagnosis going on since doctors don't have relaible tests.  And THEY can NEVER be wrong, right?  Why base your decision on someone who only looks at you as "the next patient", not "how can I get this person well"  My son's Pediatrician said he needed a nebulizer for a dry cough and illness, come to find out he had strep.  Back to the doctor, more money, and this is a very well respected Pediatrician in town.  

  Check out www.  IMMED.  org  and look for autoimmune illnesses and chronic bacterial  intracellular infections.  Dr Garth Nicolson is an expert DR here on Medhelp, and he was the Cheif scientist at the Anderson Cancer Research Facility at Ft Mead.  He had been studying Mycoplasmas and their effect on chronic illnesses.  I am only here to offer suggestions as accepting ones fate when the current evidence seems to point the bacterial/fungal infections causing chronic illnesses.

[Melissa072]

Hi
How were you diagnosed with ms?? Did your mri show lesions??
If you have chronic lyme, maybe you need to go back to a lyme dr, or if you have ms maybe you need to see a neuro...

[alli1986]

I was diagnosed with MS at the age of 23. I had a lumbar puncture which said I was negative for lymes disease, but had blood work that came back positive. My MS doctor said I had chronic lymes so I went to a infectious disease doctor who did a western blot test which he said was inconclusive. I had a tick bite 4 years prior to all this and never had the "bullseye" but had a red swollen mark that would itch, and was bothersome for 2 years. I was in Florida at the time and nobody seemed to know what to do for me or really understood lymes. I ended up pregnant shortly after and put things on hold, but she is now 8 weeks old and I am in Illinois now, and trying to look into where to go from here. I would appreciate any words of wisdom.

[Melissa072]

I have several ms symptons, and my very young daughter does too.
All mri's have been neg and L.P. was neg.
So I found  adr in australia who says lyme is here, and got tested with the cd57 and it come back at 39 indicating chronic lyme, so I then got tested at igenex overseas, and today my dr said yes they are also postivie, but I will speak to him in the morning for more details and numbers etc.
Can I rely on these to tests saying that I'm postitive for lyme, or should I still be suspecting ms???????????????
All of these posts have really confused me

[ewford]

  If you read my posting, it states that the current Labcorp test and the criteria were set up purely as a monitoring  in the form found at Old Lyme Conneticutt.  it looks for only ONE type of Borrellia, there are over 200 in the US, also it looks for the antibodies to the spirochetal form only, not the cystic, or the mycoplasmal state.  THAT is the crux of the whole discussion.  The test is flawed and the doctors keep ordering it because they don't know any better.  ANY doctor who treats Lyme on a reg basis knows the tests are unreliable, but your hometown doc dosent know that probably.  Mine didn't.   Go ahead and laugh at me, it's your choice.  I'm just here to offer a plausable and very real possibility of some if not many being missdiagnosed with an AI due to some doctors arrogance and ignorance.

And yes, you Lyme titres will be negligible with a test that is looking for the wrong bacteria.

[Pfurs]

Sorry. Just rered my post and my daughter is right, I don't come across as warm and fuzzy.

Thanks for the information. I can say that one thing I have learned from being dx with a chronic illness is to keep a positive attitude. Most days are better than others and I take it one day at a time.

Take care, Tracey.

[Pfurs]

My husband has been hunting in tick infested woods in the up since he was a child and is healthy. While I on the other hand have never enjoyed  the outdoors and have ms. They did run a lymes test and I remember joking with the dr that I would actually have to go outside in order to get lymes disease. My mother has lupus and her sister, my aunt , has ms. In fact on my mom's side of the family there is a lot of auto immune issues, especially the women.   The one thing we all have in commom is that we're related. We all live in different states and there's no military connection.

I would be more than willing to request another lymes test and mention what you have said but I don't think I would ever be comfortable giving up my copaxon if it did come back as lymes disease.  

  

[Friendlily]

Great post and sounds like you did your research! I think theres a lot of environmental things that have caused an "outbreak" of autoimmune disorders but i think the main one is all the fake sugars that are out especially aspartame...stuff thats in diet sodas/gum/foods/etc. look up aspartame poisening and it sounds a lot like MS