posted
I've been treating lyme for 2 yrs. One yr treating lyme with doxy, then the next tried amox + biaxin which seemed to help a little for a few mths. Oct is all came back, tried plaquenil- no help. Then, tried Malarone but couldn't tolerate it- developed new symptoms of rocky boat.
Added Rifampin and zithro- 2 mths- no change. Actually got worse- new symptoms.
It was decided to go back to lyme and treat bart and babs all together so I was on ceftin, zithro, plaq, rifampin AND needed to add malarone.
Day two of ceftin, symptoms worsened.. maybe a herx. So I stayed on for a week and decided to see another doc closer to home. Took me off all drugs except zithro and malarone- wants to go after babs hard first.
Was I herxing on ceftin or was it just another "think im herxing but im not"?? no idea.
Went off, began malarone- on 250 mgs 1x p day. No herx , but maybe i can breathe better but not sure... dizziness maybe better but coild be from lack of Rifampin.
symptoms while on ceftin seemed to reduce.. so maybe it was a herx.
Today I went to a Neuro who thinks its a possiblity its MS, although he didnt find too much on my neuro exam... only minor issues.
My question is what route should I take if its Positive? I mean, I've treated for two yrs and haven't a good response, although we never hit babs until now. Bt also, what if the ceftin was working....
I have another lyme doc apt next week and hope to take all three opinions and decide to go with one but feel very confused now.
What if I've neglected to treat the ms all this time and it would be better to get on the meds and I keep going after lyme and never get better...
decisions... thanks for listening!
Posts: 319 | From nj | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Two years is not all that long to treat advanced lyme. It may take another year or more. Sorry, to say that but many don't see much progress for years. Borrelia is a a very complex stealth organism with far more forms that we have even figured out at this date.
Lyme turns into MS-like symptoms, frequently. A neurologist who is not lyme literate will, of course, think of MS. But, if not LL, there is absolutely no way he can really assess your case. He would not know how to differentiate.
Volumes and volumes have been posted in many past threads on this topic. Many posts of personal experience and many links to research articles await you here:
Archives - to search for past threads with "MS" in the subject line -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Oh, Laurisabelle! I am so concerned for you.
If you have MS, it is CAUSED by the Lyme. Many on this board will confirm that.
Do not even think about giving up on Lyme treatment in favor of MS meds. MS meds guarantee you a lifetime of suffering. Lyme meds hold the possibility of complete remission.
It sounds like you have been treating with mono-therapy - one drug at a time. This is no way to treat Lyme and co-infections! You must be on multiple antibiotics, and you must go after the co-infections.
That "rocky boat" feeling is Babesia. And it's likely you had a herx with your first attempt at Malarone. New symptoms often indicate a die-off! And that's exactly the symptom my husband got when he started his babesia treatment.
I think you should go after the babesia. It can be very difficult to eradicate the other infections with babesia in the mix.
I can tell you are very confused. You mention "new symptoms" as if these indicate your disease process worsening. If you are not in treatment, that would be the case. If you are in treatment, on multiple antibiotics, new symptoms are usually a die-off. You must understand this concept.
You are absolutely doing the right thing treating your Lyme. And you absolutely need a doctor who will treat with multiple abx. NO mono-therapy!! It is not enough to get rid of these infections.
Patients linger in care for years on mono-therapy. When they don't see improvement, they are so confused. They even doubt their diagnosis. I think this is where you are right now.
Please, with discretion, let us know who your doctors are. Last initial and state only.
You MUST find the right doctor. Then you can recover.
Dump the Neuro doc. Even if you have MS (which it does not sound like), you need to treat your Lyme.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Hi, I have Lyme, Babesia, Bartonella and have ALSO been treating for MS. I use Copaxone, which is the only MS drug that is not an immune suppressor. It is a daily shot. My LLMD reffered me to my neuro, who prescribes it. I take it with my LLMD's blessing.
I was dxed with MS in 2007, after spending five weeks in a wheelchair. I treated with copaxone for one year, than figured out the Lyme piece. I believe you can have Lyme induced MS. I have many brain lesions and a couple on my spine. If you have any other questions send me a message, I'll try and help you as best I can.
Posts: 113 | From CA | Registered: Jun 2010
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posted
can anyone else confirm that the rocky boat feeling is definitely babesia? i have that feeling all the time Posts: 132 | From jersey | Registered: May 2010
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I wish I had known that a long time ago. No babesia treatment from my first doctor kept me sick sick sick!!
Posts: 472 | From New Jersey | Registered: Dec 2007
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quote:Originally posted by yankees237: can anyone else confirm that the rocky boat feeling is definitely babesia? i have that feeling all the time
Absolutely!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
MS is caused by damage to the myelin sheath.
In many cases it is caused by Lyme but not in all cases.
It sounds like you had a response to the abx which is indicative that you are dealing with Lyme.
Posts: 2232 | From USA | Registered: Aug 2009
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Remember to Smile
Unregistered
posted
quote:Originally posted by laurisabelle222: I've treated for two yrs and haven't a good response, although we never hit babs until now.
Dear Laurisabelle222, As others have noted, 2 yrs is brief for chronic Lyme disease with co-infections, esp if you have not been working with an ILADS-trained LLMD with a record of successfully getting multiple patients into remission.
Your Jersey Lyme cocktail could be quite a nasty mix of co-infections. Maybe post under "Seeking a Doc" to inquire of others who've used your LLMD?
I just ran into a neighbor i hadn't seen in 2 yrs. He looked awful: too thin, drawn, strained. Walked stiffly and said he's had to retire at age 52, disabled for yrs with MS. He used to volunteer for things, attend social events, but now he can barely keep up with activities of daily living (ADL). Gets lost while driving locally, has a hard time finding words in conversation...
I mentioned i have Lyme neuroborreliosis now, and that i think he does, too. He was much sicker than i years ago and then we lost touch. He's been pursuing the MS route and has nothing but bad to say about all his drugs and ongoing pain. In contrast, i started declining severely only recently and have begun to improve since implementing some of ILADS Burrascano's recommeneded supportive therapies. And i cut the number of Rx i take way back down at the same time.
Everyone is different. We all have unique histories that contribute to our current health. Just wanted to say that my friend with "MS" looks and feels like hell, but i'm improving a bit overall compared to Feb 2010 and that's because of Dr. J Burrascano, et al.
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posted
I'm with Sophie1234. Told 13 years ago probably MS, then figured out about a year ago that it's caused by the Lyme I've had for many, many years.
I too take Copaxone once a day shot. My theory is that whatever is causing the myelin to be eaten away, if the Copaxone can slow or stop that disease process while I treat for Lyme, I'll do it.
My LLMD is happy to have me on the Copaxone, too.
So when people ask me if I have Lyme or MS, I tell them I have both - the Lyme caused the MS.
Remember - MS isn't a diagnosis, it's what they say when you have lesions in your brain (I have many) and/or vague neurological symptoms that they can't explain because they don't know enough about what CAUSES the myelin to be degraded.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Borrelia attacks the myelin sheath. Borrelia causes lesions in the brain.
Be sure to go back through the archives as there are links to research articles there that discuss this.
Cpn is another stealth infection that can cause symptoms that have been lumped under the "MS" umbrella.
posted
I would stick with the lyme treatment. Perhaps you have an immune deficiency which would hamper your progress. My understanding is that most people take immunosuppressant drugs for MS so that would make your lyme worse.
Maybe it's time to get another llmd into the picture.
Also have you had ANA panel done for autoimmune problems?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
The rocky boat for me was diagnosed as Vitamin D deficiency originally.
Now my LLMD believes I am hitting the real cause- Babesia- as the protocols I am on is making improvements.
I believe 90% of all MS is NeuroBorreliosis/Lyme, with 9% most likely other infectious entities, with only 1% anatomic abnormalities. Just a patient.
-------------------- 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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posted
One of the symptoms of babesia has been traditionally phrased something like this:
Off-balance feeling, not actual dizziness, more a 'tipsy' feeling
Rocky boat absolutely describes this feeling! It's been one of my most stubborn symptoms. I've been treating for babs since Feb and this particular symptom is one of the last lingering babs symptoms. It has, however, improved VASTLY since starting the Mepron!
Posts: 155 | From Texas | Registered: Oct 2007
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posted
You have babesia and lymes disease, do not let these lyme-ignorant doctors steer you off course! I have babesiosis too and I have the 'rocking boat' symptom, exactly as you describe it.
It is very frustrating! Also, my cousin was diagnosed with MS by a quack neurologist BEFORE she was diagnosed with Lymes. With treatment she has recovered all neuro symtoms but still has relapses sometimes. Through it all she has raised 3 children and had a wonderful life for the past ten years.
If we all had a nickel for every lymes patient who's been diagnosed with MS, we could all afford better treatment!
Posts: 41 | From astoria, new york | Registered: Feb 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Told MS for 17yrs. since doing abxs no new lesions and no old enhanced.
I NEVER did any mainstream MS treatment. Copaxone would be one I would only do, but I read an Italian study that said it was no better than placebo.
I did do LDN prior to finding out Lyme...my lyme symptoms excerbated while on that. (swollen joints)
Dr. Bahari, the founding doctor of low dose naltrexone, was my "MS" doctorat the time & said-something else going on. He was thrilled when I found a LLMD & positive for lyme in 2003.
I too call it Lyme induced MS. Plus I had Babs & Bartonella.
Lots of oral combos and finally did I.V. Tigecyl...been off abxs since 4/09.
Dealing w/thyroid & back issues now. On 2.0mg LDN since 3.0 makes my thyroid wacky & back/legs too stiff.
Get a good llmd, find out if any co-infections.
Get the dvd of the presentation #5 "Chronic Lyme Disease: Connection to MS- Facts behind the controversy" (DVD)
posted
M.S is not a well diagnosed disease in my opinion. Brain lesions may be seen in as many asympotamics as not. i think the diagnosis trie to take in a broad based symptomatic population and try to group them as a single disorder. It is supposedly characterized by the loss to the myelin sheath surrounding the nerves, but I am curious in exactly what the cadaevar studies showed in terms of people with an M.S diagnosis and myelin problems upon death. I am interested in the overlap between the symptoms, and think the subject deserves more discussion. I have posted here befoe suggesting folks check out the Kleener protocol for M.S type symptoms
Posts: 357 | From California | Registered: Jun 2010
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Do you know which areas of the brain your lessions are most profound at? I wonder as there is a doctor in NYC researching neuro manifestations of Lyme disease and I can remember reading in some of his reports that he was finding patients who had positive diagnosis of Lyme by blood tests EM rash or PCR test and lesions in the brain more often than not had the lesions show more selectively in specific areas of the brain where as MS patients with no history of Lyme had lesions more profusely throughout all or more various areas of the brain. He also indicated that experienced radiologists that read MRI scan seemed to be able to even identify the patients that most likely had Lyme disease based just on where the lesions were and distinguish them from patients who had MS with no lyme connection during blind studies. There are also reports of the lesions disappearing when Lyme patients are treated effectively and early enough or at very least no further enhancements of the lesions.
I recently had an MRI show white matter(my MRI's three years ago did not show this) and after a long fight someone finally tested me for Lyme due to my complaints about bizarre severe headaches, eyeball pain and fatigue and my tests were positive. I had tick bites in the past and EM rash which diagnosed me with Lyme and I believed I either contracted it again or was having a relapse but none of my local doctors wanted to hear it. I am now on abx, feel better and will be interested to see if the white matter goes away or at least just stays the same on any future MRI's that may be done. The interesting thing is that the white matter on my MRI is in the same area of the brain that the NYC doctor was finding to most often show up in Lyme patients, yet the neurologist I saw discounted that Lyme could be causing the lesions and never tested for it but rather said it was probably coming from complicated migraines, or more unlikely microvascular disease. She didn't really mention MS as I was not experiencing weakness or other things often linked to MS. This link between Lyme and white matter showing in the brain needs to be studied further. It might save a lot of us a lot of sufferring.
I would appreciate if any of you are willing to post the area of the brain your lessions are in.
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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posted
Chopper.. I just went to a lecture of a CA llmd and she talked about the lesions and where they are. She does have a facebook site, and I'm sure you could ask her in that site. She seemed very aproachable. If my lyme brain can remember, it was certain areas that we all have compared to others without lyme. I can pm her name if you'd like.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Chopper & other, you can order the DVD presentation from the University of New Haven the #5
scroll down to tisa o'neil's post of her remission...she answering questions of the clinic she received the "liberation" treatment in AZ
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Please pm me the name of the CA llmd with information on brain lesions
Thanks
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Hadlyme - me too. Please PM me the name. Thanks
Posts: 2232 | From USA | Registered: Aug 2009
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i don't think all MS is lyme; however, if you have lyme disease, and you start developing symptoms of MS, it then seems likely that those MS symptoms are caused by tick-borne infections in the CNS.
massman, i agree that particular obsession is kind-of amusing, but i think it stems from the medical community's/the public's ignorance about chronic lyme, and the hell most of us have endured because of it.
i know this is a lyme support site, but i also find it.. well, upsetting isn't the right word.. but i disagree with the prevalent notion that every autoimmune disease or undiagnosed illness/symptom under the sun is caused by lyme disease. lyme may be one factor in many of these situations, or it may not, but it isn't the sole culprit, & often it's not even the main one.
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