posted
WOW! I'm so sorry for your family's bad fortune. I would agree with you that Lyme makes more sense for all of you. I know it can lay dormant for a long time. There may also have been symptoms that you didn't know were symptoms.
Do you have a LLMD?
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
If you test positive for Lyme, you have Lyme. Even if you don't test positive, you can still have Lyme. MS is just a syndrome or series of symptoms with no known causitive agent.
To answer your question, you are right, the liklihood of all of you having MS is incredibly remote.
It could very well be that if you receive treatment, and really, what have you to lose? that you may get out of that chair (several have) and definately you have a very good chance of halting progression.
I would encourage other family members to be tested too. Including your niece who is in her 20's as she may have the shortest time with illness and a better chance to have a full life.
Your story is amazing. I'm sure that there are many more like it. Once some are given a diagnosis they tend to stay there. So glad that you persued another avenue.
Welcome! and please post your Igenex results when available.
Feelfit
[ 07-13-2009, 10:45 PM: Message edited by: feelfit ]
Posts: 3975 | From usa | Registered: Aug 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Doing your own research as you are doing is the best course of action.
MS along with other conditions were one of the things I needed to confirm or rule out.
I recall asking my lyme doc how he could tell whether or not it was lyme or MS because both have lesions on the brain and both have the ..sorry, can't get the word I want..bars??
I had Igenex Test results that I took in with me.
He pointed out the bands (that's it..bands...that were indicative to lyme)
I later found out he had been dx and treated for MS for 3 years (?) before he learned it was really lyme and company.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Good for you for not letting them railroad you into having a syndrome rather than a disease. It took me awhile after my MS "diagnosis", but I'm glad I pursued the Lyme thing, even after being told I didn't have it, couldn't have it, and that I would be sick the rest of my life and probably in a wheelchair at some point.
I agree with FeelFit - what have you go to lose by pursuing the Lyme diagnosis? You may end up better than you are now.
Are you on any of the MS drugs? I've chosen to take Copaxone, after finding many new lesions this summer after a recent relapse. I'm hoping that it will slow down the progression while I treat for Lyme.
Good luck and let us know what you find out!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Four siblings with MS? I would think the odds of that are higher than one in a million.
I would not believe that diagnosis without doing some self testing for Lyme. It is easy enough to provoke a Herxheimer reaction with any number of Lyme treatments. MS does not respond to Lyme treatment by producing Herx to my knowledge, so why not do a little experimentation?
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
My recent push to pursue Lyme has come due to some enlarged lymph nodes recently found on a mammogram. I had one removed surgically. The original pathologist called it T-cell lymphoma. Flow cytometry and special stains did not confirm this and the oncologist said directly to my face "You do not have lymphoma" this was even after a petscan found more nodes in my groin were enlarged and active. The MD's are still saying- you can send the lyme test if you want.. Lymphadenopathy can certainly be a marker for a chronic infection-like Lyme disease.
I was on Avonex for 4 years, then cytoxan for 2 1/2, then zenapax for 4 years. The interferon stopped helping-more relapses, cytoxan was unpleasant but I seemed to stabilize, zenapax-I don't know-I had no control self not on zenapax to comppare to but it could have affected my lymph nodes.
Now anxiously awaiting IGeneX results. I have an osteopath who had IGeneX kits and ordered the tests. If positive I will seek a true LLDR. My siblings are doubtful but interested in my results.
Posts: 7 | From New Hampshire | Registered: Jul 2009
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posted
Wow. I am so glad you have your Igenex tests done and the results are on the way. Can't wait to see them; promise to post them ok?
I am diagnosed with MS also, but found out I have lyme, plus two coinfections last September. I also have brain and (had) two spinal lesions that have healed (yes!) since I have been on IV abx. (Seven months now.)
I believe a person can have Lyme induced MS, but there are varying opinions on this. MS seems to be the autoimmune system attacking itself, which I believe Lyme can trigger. However, treating the underlying Lyme disease is a must. These are just my thoughts on the two diseases, not necessarily the only theory. God bless you. P.S. I spent five weeks in a wheelchair. I walk all over the place now. You can do it.
Posts: 374 | From United States | Registered: Nov 2008
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posted
I know of two sisters who both have MS and they were bitten by the same group of ticks as children because their stepfather kept some of the ticks at the time incase they ever needed them for testing. I have no idea if the ticks were ever tested or not.
Posts: 42 | From the woods | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
alonzo please do a MS search. You will find much input of the subject. T cells are extensively involved in the studies of Lyme.
Please remember that many have to challenge with antibiotics before you get a positive test.
I was almost in that wheelchair and I did 3 mths. of homemade antibiotics to get a positive.
Meaning the immune system is shut off and it will not show positive until you kill some of them.
I do know someone who was diagnosed with lymphoma in breast. Rare to be discovered there first.
Are your parents still living? Do they also have symptoms?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
welcome alon
could you break up each of your individual posts into SHORTER paragraphs and double space between each one for us neuro lyme folks who can't comprehend or read as is. then we can HELP you better ok
i'll give you my welcome letter; after it, i'll go to my own file links, and copy any MS/LYME ones for you ok hugs/kisses
i feel for your family ... wow! *****************************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
I edited my original post but cannot figure out how to send it annywhere.
I have a IgG and IgM western blot pending as well as a PCR on serum and whole blood.
Posts: 7 | From New Hampshire | Registered: Jul 2009
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posted
This question has come up a number of times in the past. So, the replies will be in the lymenet archive. Click on the search word up at the top of the page and try that for more info.
And there used to be a thing put together by Art Doherty about lyme misdiagnosed as various diseases, including MS. Not sure where to find that now.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by alonzoquixano: Can we all have had latent lyme for so long?
I am not sure, but it appears to be possible. It seems to take 30 some years for my wife and her brother to notice something is wrong.
Slightly different from your experience, my wife side of the family has three generations of "MS", which is remarkable in its own right, I assume.
My wife's mother was diagnosed MS in the 80s by the famous Cleveland Clinic. About the same time her own father was diagnosed MS somewhere in Boston/Maine area where the family came from. My wife's mother also has a sister with epilepsy, and another with lupus.
My wife started her own MS-like symptoms about 4 years ago - she was a ballet dancer up to that point. A few months prior to hers, her only brother had MS-like symptoms.
Just recently my wife tested positive for Lyme and co-infections. Her brother is going through the test now. It is too late to test her mother and grandfather now because both have passed away. Thanks to Cleveland Clinic.
So I would say it is possible.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I agree with D Bergy, my original dx was MS so I decided to do some natural things like salt/c, olive leaf extract, and cat's claw to see if there was any change.
I did them one at a time and each caused a herx or improvement, so I knew it wasn't MS. The salt/c actually purged some parasites that are pictured on Lymephotos.com. Never heard of a starfish like parasite being involved in MS.
That and I have no family history of MS. I know someone who has a total of four siblings diagnosed with MS. There has to be an infective agent behind that.
My LLMD treats his MS patients as misdiagnosed Lyme patients and has success doing so.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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i am in a similar situation. spinal cord affected and in a wheelchair. i was dx with ms for 6 years before i found out i have lyme, and probably had it for decades before. the many neuros i saw over the years swore this was not lyme but i have proof lyme was there in 1999. i believe lyme can hide out in the body for a long time quietly doing damage.
4 siblings affected! i would treat for lyme and see what happens. there are other infections that cause problems too. co-infections of lyme and cpn. check out cpnhelp.org
do you hae a lyme dr? there is a ll neuro in ct that i have recently started seeing. you can pm me if you want his name.
Posts: 262 | From nj | Registered: Dec 2007
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not very overwhelming. right now just letting this sink in. my DO says this does not rule lyme out.
Posts: 7 | From New Hampshire | Registered: Jul 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
These results are SIGNIFICANT
IgM + 18,23,28,34,45 IgM IND 41, 31, 23, 25
IgG + 41,445 IgG IND 31
You have a very good chance of having lyme. Most lyme doctors would view your test as positive.
Your + on 34 IgM is Bb specific, meaning that nothing else except exposure to Bb couold be responsible for this.
Your Indicators on IgM bands 31,41,23-25 ARE ALL Bb specific. An indicator is like a fingerprint, it still is suggestive of Bb. Most lyme doctors treat these as positives.
Your IgG band 41 and 31 IND are also suggestive of Bb.
Overall, I would say that this is a test that need s further consideration. An antibiotic challenge would no doubt turn those IND to + bands.
My personal opinion is that you have Lyme disease. Please read Dr.C's Western Blot expanation at the top of this page. And get thee to a LLD.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I would agree that it is highly unlikely that all of you have MS.
Looking at your recent test results, your antibody response is in fact suggestive of lyme. If it were me, I'd be seeking a LLMD ASAP to start treatment!
Posts: 561 | From mass | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I too say Lyme. Any LLMD I believe will tell you it is Lyme. And yes most will tell you it will get
worse before it gets better. But it can get better!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
scroll down to the Lyme Disease Educational Material
check out #5
After 17yrs DX "MS" he was the first MD to do the Western Blot on me.
Yep, got Lyme & the other tick diseases.
Since doing abxs...no new lesions, non enhanced in the last 5 yrs.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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bettyg
Unregistered
posted
alonzo, wonderful editing; thanks so much.
i too say you all have lyme disease and especially after you listed all your POSITIVE/IND results above.
yes, i showed the link above in my welcome letter to click on for dr. c's explanation of western blot.
lou,
art dougherty took down his link showing the lyme/MS and 300 other diseases mimic lyme disease post!
was removed 1.5 - 3 yrs. ago already...
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Research these words:
Prolactin MS (hint: prolactin given to mice spontaneously restored the myelin sheath)
Lysine MS (hint: high doses of lysine put MS in remission).
MS is believed to be triggered by a virus, not a bacteria. HHV-6 ***mutation***. HHV-6 is already present in most of us.
Prolactin levels (to trigger the cholesterol pathway and form the myelin sheath) levels often go UP in lyme.
Bb triggers the Th1 pathway, making it really hard to deal with pathogens that need the Th2 pathway to kick in.
Most viruses need arginine (thus depleting).
Bb also breaks down arginine (and proline) AND uses lysine.
Restore the balance WHILE downregulating the inflammatory cytokines.
Baclofen is not enough.
Gi Go have to be made...and in sequence...to work.
GABA B is NOT a chloride channel.
Lyme borreliosis and multiple sclerosis are associated with primary effusion lymphoma. PMID: 17197115
Google: Pubmed
Put in the #s.
Another:
"The up-regulation of MMPs in MS may contribute to the pathology of the disease. PMID: 9444361
Plus:
Three of the seven--MMP-9, MMP-7, and MMP-12--were significantly *decreased* in patients supplemented with omega-3 fatty acids. Intercellular adhesion molecule 1 (ICAM-1), an adhesion molecule involved in the recruitment of monocytes into the vessel wall, and the inflammatory cytokine interleukin-6 were also lower in patients taking fatty acids.
Thanks for this info, I have read much but not all of it yet.
Are you suggesting that MS is an independent entity from Lyme? A result of Lyme?
The treatment you recommend- is for MS, even if no Lyme is present?
I am taking Isotonix OPC now at a triple dose for antioxidants, Does that alleviate the need for OmegaBright or is this very different?
Will treatment for Lyme be likely to improve my situation or at least prevent further progression of neurologic deficits?
I went to my PCP today who said
"it was ridiculous to pursue Lyme. My ELISA was negative and there is no proof that that this test is not adequate,
no studies have been done by anyone other than companies who do western blot tests-
there are none by independent, university, or government funded agencies with no stake in any form of testing.
There are people who are sick and have been on antibiotics for years who are no better, never tested positive for Lyme by ElISA and claim to have lyme disease-
where is the proof?"
He pretty much thought I was crazy and being duped into spending money on irrational tests by people with no scientific basis for claims.
He was not aware that lyme could cause lymphadenopathy.
There was a conference on my case with the pathologist, radiologist, oncologist, surgeon, and PCP.
They evaluated my blood work, lymph node biopsy report, petscan findings, and abdominal ultrasound and noone had an answer to what was wrong with me.
No one mentioned lyme.
I am waiting to speak to Dr. Harris at IGeneX about my results and then find a LLD.
Deb
Posts: 7 | From New Hampshire | Registered: Jul 2009
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hey, good for your DO!
When you are thinking lyme, think beyond lyme itself.
In my case, babesia ducani (a tickborne parasite) is my main enemy and mycoplasma pneumoniae is right behind it.
I have Rheum. Arthritis, another auto-immune disorder. I never believed that my immune system was just running amuck. I always believed something/s was triggering it.
Turns out I had heavy metal toxicity, overload of yeast (mercury feeds yeast) from years of antibiotics for one infection after another. H. Pylori (gut bacteria that causes ulcers and aggravates RA) I tested positive for CPN, EBV, HHV-6, tapeworm as well as high levels of babesia ducani and mycoplasma pneumoniae.
Tested positive for past exposure to lyme. Well, duh, yah, I have been exposed to ticks my entire life and had way too many tickbites to count.
Treatment has me functioning 100% normal.
I do not believe I have lyme instead of RA. I believe lyme and coinfections triggered RA. I also believe that antibiotics over the years damaged the gut flora allowing candida yeast to proliferate and escape into my body. My body may have even allowed this to happen so the yeast would eat the toxic mercury. I tested dangerously high in lead and mercury.
It is hard to say which order things happened. Bottom line, as my LLMD said "When you are this sick, it is never just one thing."
So, call it lyme, but a good LLMD is going to be checking you for lyme and much more.
Stick to it. There is an answer.
BTW, my personal opinion is that you and your sisters are genetically predisposed to MS. That doesn't mean your genes will cause you to have MS. It means if you are exposed to the right triggers like lyme, the disease path will probably manifest as MS.
MS is just a label. It is not a disease and therefore, pursuing treatment for the disorder just means symptom control. We all know that is not a successful path to healing.
Pursue all possible causes to MS and then eliminate the ones you test positive for. This should bring about remission eventually.
It is working for me.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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