posted
We need some help here. I am now terrified. It has been 5 years, 40 doctors, 4 times hospitalized for pancreatitis, no other diagnosis.
Then we go do Dr. R, neurologist NJ who does a Brain spect and MRI, both are abnormal and he's leaning toward Lyme. First he wants a spinal tap so we go thru with it. Then the results come back totally negative for Lyme but positive ANA and Epstein Barr.
He is saying based on the ANA result he is leaning toward MS not Lyme. Does not believe it's Lyme because of the negative result!.]
We have had 2 IGG positive IGM negative Igenex tests but never positive through any other lab. Had positive Erhlichia and RMSF in the past.
We did see several LLMD's and treated for 6 weeks on IV Doxy but then got pancreatitis, which is why this has been so hard for us because it just kept happening putting us between a rock and a hard place... treat with ABX and risk pancreatitis for the 5th time?
This is why we so wanted a positive test to be 100% sure it is Lyme.
I asked if it was possible that we HAD lyme and are now left with MS. He said yes, it is controversial but it's called Post lyme syndrome so he does believe in that.
OK.. now here's the thing. He wants to treat us with high dose IV steroid for 7 days to see if his symptoms improve.. if they do then it is MS.
I asked about the effects of steroids if it's Lyme. I know about steroid disaster. His reply was that it wouldn't necessarily make it worse and if he didn't get better we would then start to treat with ABX.
He feels this is the best way to proceed to get to the bottom of it. Because of the lesions on his brain, he is saying it is definitely MS or Lyme.
Burruscano says the sicker you are with Lyme the more likely you are to test negative in blood and in spinal tap?
I am terrified of what the steroids could possibly do!
Help!!??!!
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Well, since you have a positive EBV test in your spinal tap, why not consider the possibility of a chronic EBV infection causing your problems? (And maybe other viruses as well?)
I'd rule in or out the possibility of a chronic EBV infection before using steroids.
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Post Lyme Syndrome is the term they use when they don't believe in chronic Lyme. I was IgG positive, IgM negative and responded well to Lyme treatment. I would be terrified of the steroids.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
With what I know today and the misdiagnosis I've read about and seen first hand I would not go on steriods.
If you were positive IgG Igenex this indicates 2 double starred bands which are Lyme bands. It indicates exposure to the Lyme spirochete.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
ABXs are also a treatment for MS. Go to ThisisMS.com and look under the Antibiotic thread. Do not go on steroids...There is always a bacterial or viral reason for the inflammation. Ask him why not try ABX first ? I have a friend who supposedly has MS and she has done IV steroids and is doing horribly. Losing feeling in her legs and walking is hard now after treatment. Please reconsider.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Find a new LLMD. Get a second opinion. You never needed a spinal tap, as most of us who were subjected to them did not not. Avoid the steroids and get a second opinion and find an LLMD who is really up on the latest cutting edge stuff and who uses both integrative and allopathic modalities.
You can never beat lyme with medications alone unless it's a very early case as in being bitten and starting ABX immediately.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
the steroids could make you a lot worse, they told me i had MS and needed steroids and they made me so much worse and really let the lyme take hold of me did me
worst thing i ever did was the steroids be smart and run don't walk but run from them
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'd run in another direction. I wouldn't trust this doc with my health and well being, period.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If I remember correctly, less than 10% of people with Lyme test positive in spinal fluid.
I'd try antibiotics first, expect a herx and tell the doc you will, so he doesn't think a potential worsening on antibiotics means it is MS.
posted
I was DX with MS and had an elevated ANA, also had white spots on the brain MRI . I tested neg for lyme .I never took steroids.
Well that was in 1992. My ANA is back to normal and the white spots are gone . I still have symptoms of lyme but I am very active even so. Like you I have seen at least that many doctors. Most do not want lyme patients and will pass you off. Doctor P in CT has worked with (MS vs Lyme) patients LLMD
***edited name of city per rules ... I believe this dr is retiring***
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I second the rife notion!!!!!
All in favor say Aye, all opposed say abx(nay).
Just a little added humor.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I for one was MS for 17yrs found out Lyme through Igenex.
I NEVER did any steroids or the horrid MS shot treatments touted as the MS ticket.
Thse that did..one in convelsant home & 2 are DEAD.
A woman (also MS found out Lyme) steered me to Dr. P...he's my hero.
Dr. S P: "Chronic Lyme Disease: Connection to MS- Facts behind the controversy" (DVD) This lecture was recorded at the Lyme Symposium held at the University of New Haven on May 12, 2006. $15
Look into CCSVI - Chronic CeberalSpinal Venous Insufficieny Google: CCSVI and MS
posted
I have to look further into the RIFE - don't know much about it but it can be done on it's own or in combination w/abx ??
Also, I am going to try to see Dr. S P, but someone here said he may be retiring - I hope not!
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'd run away from steroids. I had steroids in my back before i knew i had lyme and it was downhill all the way.
lyme patients should never have steroids in any form. well at least that's my opinion.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Check out the thread on Rife. You can use it with abx, but most recommend to do it without abx.
Dr P is retiring.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Dr. P is retiring??!! Wow, this is a shock! He isn't that old! Plus, we need him. Sigh. Maybe he will continue with research, like Dr. B.
DO NOT do steroids!! I did a little before I knew what I had, and boy have I paid for that! I second everything everyone else has said. The brain lesions go away with treatment. But probably not if you do steroids. Lyme is treatable; MS is not, except palliative care that often kills in and of itself. Your neuro is NOT Lyme Literate, unfortunately. Most are not. I know of two that are, but only two.
You need the best LLMD you can find that does integrative work. And, yes, rife and herbs are a good option, due to the pancreatitis.
So you (or your husband, not sure who the patient is) got pancreatitis from IV doxy?? And from other abx? Can you tell me more, via PM, if you want)? I'm asking because I am having a lot of symptoms from IV abx (first rocephin, then doxy) that I think are developing into Chronic Pancreatitis. But the GI dr thinks I'm fine. But my symptoms are anything but fine, and my pancreatic enzymes are climbing again. (Sorry, didn't mean to highjack your thread).
Posts: 3792 | From around | Registered: Mar 2008
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posted
I heard that DR P may return. I believe he is ill.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
MS can be lyme or cpn. On cpnhelp.org there are many MS diagnosed people. Please read and connect to these MS people and get started with abx. Steroids would harm you.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Sandyk, what steriods are we talking abt. What would be the dosage and protocal? And what is the docs reasoning for using them. I ave a lot of experience with this but need some facts first. Thanks
Posts: 80 | From scottsdale | Registered: May 2011
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posted
Ditto so so many - I had neg Lyme tests (until tested properly), white spots on brain, massive neuro sx, achey joints, etc. etc. 4 years later - white spots gone (clean MRI), neuro stuff 90% gone, etc. JUST did abx. NO to steroids!!!
Posts: 43 | From Chicago | Registered: Mar 2008
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posted
I will find out more info tomorrow am from the docs office. All I know is he wants an aggressive 6-7 day IV steroid to treat MS. And he said if we feel better than it is MS, if not then we go from there possibly onto ABX, but with all the negative tests he was totally against lyme. That's when I freaked, and I was just lip to the floor when he was telling us MS. So now I have my questions together and will get more info.
Will post back - thank you everyone.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Many in the lyme world believe MS is lyme since the symptoms cannot be distinguished. One day, MS may be a thing of the past as they find out that antibiotics cure it.
Anyone with the MS diagnosis should insist that they want to try antibiotics FIRST and not second. I saw a coworker get no better on the MS shots (did them for months) and then get rid of her MS on antibiotics. Then her doctors said, "Well, guess it wasn't MS after all."
I would never accept an MS diagnosis from anyone. To me, MS is lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Im on the same boat as you, MRI lesion wide array of symptoms indicating the beginning of MS.
Spinal tap came back negative for myelin protein's but im still being pushed towards an MS diagnosis despite positive Igenex and CPN blood work.
When given the choice to start abx or a steroid trial i thought long and hard but decided to go with abx. To me we really have nothing to lose by trying abx. The alternative is to accept that we have an incurable illness and for me that was not an option.
Im on my 8th week of oral abx and have experienced multiple herx reactions. Far from feeling any better but i feel i am on the right track.
quote:Originally posted by DDEC2: To me we really have nothing to lose by trying abx. The alternative is to accept that we have an incurable illness and for me that was not an option.
- Exactly
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Heck yeah you should try abx. Try them I did for 3 years. Too darn long. I'm not a mental heavywieght.....but I found out abx were NOT the "cure" for me.
So I would recommend anyone go with abx first. But not everyone is going to get results. There are many failures with abx.
Now if you want to go five years and you're making progress...go for it.
But when you are on them for long periods and you realize you are going downhill, in fact you might feel like you are dying a slow death at a young age?????
It's time to think outside the box of traditional medicine. What do I know? Plenty about abx failures. It does happen.
What causes it? I don't know the answer to that. But I'm not dying a slow death. In fact I can say whatever this is I have/had is not going to beat me.
I've been tick bitten, spider bitten, mites bitten and who knows what else? I've also been bitten by docs and healers that weren't for me.
I have even spent more money than primary and secondary insurance companies on me in the last 12 yrs for this and that like supps, vitamins, alternative and traditional meds alike etc.
So try traditional medicine. Just don't let anyone tell you they have the magic "cure". They don't. If you do go into remission and get your life back. Give thanks to everyone and anyone that helped you. if you are cured?
TBTG!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
My spinal tap and MRI were highly indicative of MS but luckily my Neuro said "It's either MS or Lyme". Let's treat you with some abx first and see what happens. Luckily I responded to the abx. I think trying abx first, rather than steroids is a whole lot les risky. Sounds like this doc is experimenting and knowing what I know now, I wouldn't participate in that experiment. Go to a LLMD ASAP!!!!....and bring all the test results from that Neuro!
Posts: 2541 | From Northeast | Registered: Jan 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
RUN! Find a real LLMD. This doctor could be detrimental to your health.
My mother is sick like I am, went on steroids and ended up in a nursing home in her early 60's. She was the youngest nursing home patient they ever had. My niece who is also sick was put on steroids and she is now too sick to attend school regularly.
Others have explained why spinal taps are not to be relied on. There are many reasons that you could have tested negative at other labs. IgeneX is a specialty lab and they know what they are doing.
If you've tested positive for other TBI's then it seems highly likely that you could have lyme.
DO NOT TAKE STEROIDS UNLESS IT IS LIFE OR DEATH and even then I would only do it under the care of an ILADS LLMD.
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