posted
Those of you with primarily neurologic Lyme, what sort of treatment has helped you the most?
I have read and talked to many people that are undergoing much more agressive treatments than my Dr. is willing to use. Do any of you feel like you would not have gotten any better without an agressive treatment?
For instance my current treatment includes only 250 mg of abx daily. I do alot of my own natural support but that is all that my Dr. thinks that I should be doing. I have continued to get worse on this treatment; however, I was continuing to get worse on a prior 2 gram per day dose as well.
Any advice regarding agressive or not?
Posts: 38 | From P-TownOR | Registered: Dec 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
When you say getting "worse", perhaps you're herxing ? A few more specifics would help.
How long have you been ill ? What symptoms ? How long and with what have you been treated ?
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi GL
These bugs are Very powerful-- and need to be treated as such--
I am a ferm believer in if a little is good a bunch is better--
If you go this wrout -- you have to drink 2 to 3 gallons of water a day to keep from becoming toxic--I drink tea --
Also when I herx I take More ABX -- Its more painful but I feel it is also more effective --
What meds are you taking? How long?
What bugs do you have?--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Most definitely gotlyme,
If I had not gotten IV ceftriaxone on more than one occasion I am sure I would have died...
But before I died I would have suffered greatly from the pain and would have gone totally insane....and probably would have hurt someone or anyone......
That's how much this disease can over take your body and mind....
I was treated early on with just oral's and I relapsed most terribly...
Hope this answers your questions........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
My symptoms have been straight ALS (muscle weakness, crampin, twitching...). Rocephin has been the only abx that I have been on.
Started with 2 grams per day for about 3 months. Switched Dr's (the one who gave me the 2 gram perscriptiion was going to give up on me) and the new LLMD (ILADs Member) started me back on the same abx at the very low dose that I am currently on (250 mg).
The reason for the low dose = the worsening of my symptoms was due to herxing.
This reason I am not fully convinced of. My symptoms have been progressing at a constant pace for the last 2 yrs, albeit they sped up slightly when I started Cats Claw and abx.
Therefore how can I call this a herx. Basically the same symptom progression on and off of abx.
I have been tested for some of the Co-infections; however, I can not convince my LLMD to test me for Mycoplasma. I have already switched Dr's several times and I thought since I finally found an ILADs Dr. that I was going to receive an agressive treatment.
The natural therapies have been administered by a Naturalpathic Dr. and acupunturist. Unfortuantly this Dr. does not have much more to offer.
Posts: 38 | From P-TownOR | Registered: Dec 2005
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posted
I am wondering the same about my treatment.
My doctor has me on only 200mg of doxycycline a day. And my symptoms are mostly neuro.
And he won't help with the pain, he's only open half-days and it's a long drive.
And, with all the current buzz about co-infections, I'm more aware than ever that he's never so much as mentioned treating for anything but Lyme.
And he's expensive.
AND does anybody really know? Only those of you who have been through it already!
Posts: 353 | From Florida boonies | Registered: Nov 2005
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quote:Originally posted by GotLyme?: My symptoms have been straight ALS (muscle weakness, crampin, twitching...). Rocephin has been the only abx that I have been on.
Started with 2 grams per day for about 3 months. Switched Dr's (the one who gave me the 2 gram perscriptiion was going to give up on me) and the new LLMD (ILADs Member) started me back on the same abx at the very low dose that I am currently on (250 mg).
The reason for the low dose = the worsening of my symptoms was due to herxing.
This reason I am not fully convinced of. My symptoms have been progressing at a constant pace for the last 2 yrs, albeit they sped up slightly when I started Cats Claw and abx.
Therefore how can I call this a herx. Basically the same symptom progression on and off of abx.
I have been tested for some of the Co-infections; however, I can not convince my LLMD to test me for Mycoplasma. I have already switched Dr's several times and I thought since I finally found an ILADs Dr. that I was going to receive an agressive treatment.
The natural therapies have been administered by a Naturalpathic Dr. and acupunturist. Unfortuantly this Dr. does not have much more to offer.
Listen to me real good. When Lyme mimics ALS, true ALS, this is nothing to play around with. You don't need to stay with either doctor. Make yourself an appointment ASAP at Columbia University with Dr. Brian Fallon.
While most of our LLMD's are great, the ALS kind of Lyme must be definitively diagnosed, without question. You need to have a muscle biopsy, and you need to see Brian Fallon. There, an expert team can determine whether you have both Lyme, AND ALS, or just Lyme.
This is perhaps the one exception, maybe MS being the other, where you simply have to go to New York City.
If its only ALS, then you have to find out very soon.
Please don't take this advice as just some other joe. I would give this advice to myself, my best friend, my mom, dad, or anyone I truly loved.
If you're not exagerating, and your symptoms are truly ALS like. See Brian Fallon at Columbia. Call on Monday, or as soon as you can.
Posts: 559 | From Cary, NC | Registered: May 2006
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It is my understanding that Dr B.F at Columbia only sees patients that fit in with his current research -- specifically cognitive issues related to Lyme. I spoke to some of his team and they referred me to a neuro at Columbia University -- not the same group as at the Lyme Research Center.
Spoke to the lady neuro but did not follow-up with an appointment for hubby as I got the impression that they might diagnose Lyme etc. but would not be involved in treatment. This was probably about 6 months ago.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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i've been trying to see a neurologist (a neuro surgeon who folow-up on anantohter issue really wanted me to-for neuro muscular) not a lot of neurologist here so tis has been on hold
the lyme doc i have been wokig withs eems ambivalient about me seeing a neuro though, and i don't want to go thorugh the mockery taht i have been through with other neuros--so on hold
so--back to original question what truly are ALS ( like ?)symptoms?
thanx all-
jif
Posts: 208 | From Santa Fe | Registered: May 2006
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quote:Originally posted by seibertneurolyme: LymeScience,
It is my understanding that Dr B.F at Columbia only sees patients that fit in with his current research -- specifically cognitive issues related to Lyme. I spoke to some of his team and they referred me to a neuro at Columbia University -- not the same group as at the Lyme Research Center.
Spoke to the lady neuro but did not follow-up with an appointment for hubby as I got the impression that they might diagnose Lyme etc. but would not be involved in treatment. This was probably about 6 months ago.
Bea Seibert
That may be true. However, I know of at least 3 people who had both Lyme AND ALS who saw him.
The one point you made about him is of great significance, he is a researcher.
Ever see the show House on Fox?? Whenever there is a relativly rare phenomina, researchers are interested in that kinda think whether its their main interest or not.
The cases of true ALS mimicing Lyme are not reported often in the medical literature. If the individual in question fits that extremely rare subset, rest assured that someone on that team would probally take this kind of a case.
If not, then going to a Nuero they recommend might not be a terrible idea, as they wouldn't recommend a nuero that has no idea about Lyme. The other thing to do might be to find a local Nuerologist to rule out ALS.
Then again, that would be my second choice. If your symptoms are ALS in nature, and Fallon agrees to take your case, go there.
If he is only willing to diagnose, still go there, remember, the important thing in this kind of Lyme is accurate Diagnosis.
With as many unknowns as there are in ALS, treating Lyme Disease may not be good, no one really knows, although the NIH is sponsering a trial of Rocephin for ALS.
My point is that even if Fallon won't treat you, getting a definitive diagnosis in this rare condition is critical.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
What is ALS Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment---"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
What Types of Nerves Make Your Body Work Properly? (from Living with ALS, Manual 1: What's It All About?)
The body has many kinds of nerves. There are those involved in the process of thinking, memory, and of detecting sensations (such as hot/cold, sharp/dull), and others for vision, hearing, and other bodily functions. The nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle power. Examples of voluntary movements are your making the effort to reach for the phone or step off a curb; these actions are controlled by the muscles in the arms and legs.
The heart and the digestive system are also made of muscle but a different kind, and their movements are not under voluntary control. When your heart beats or a meal is digested, it all happens automatically. Therefore, the heart and digestive system are not involved in ALS. Breathing also may seem to be involuntary. Remember, though, while you cannot stop your heart, you can hold your breath - so be aware that ALS may eventually have an impact on breathing.
Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease.
While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, Rilutek�, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
Importantly, there are significant devise and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS `burns out,' stops progressing or progresses at a very slow rate. No matter what your individual course or situation may be, The ALS Association and your medical team are here to help. To learn more about the personal stories of people who are living fully, click here. As one man put it, ``I've made ALS part of my life, not my whole life.''
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
The ALS Association 27001 Agoura Road, Suite 150 Calabasas Hills, CA 91301-5104 Phone: (818) 880-9007 | Fax: (818) 880-9006
Initial Symptoms of the Disease At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing twitching (fasciculation) and cramping of muscles, especially those in the hands and feet impairment of the use of the arms and legs "thick speech" and difficulty in projecting the voice in more advanced stages, shortness of breath, difficulty in breathing and swallowing The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.
Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.
The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.
As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilatory support in order to survive.
Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.
For the vast majority of people, their mind and thoughts are not impaired and remain sharp despite the progressive degenerating condition of the body.
posted
The ALS Association 27001 Agoura Road, Suite 150 Calabasas Hills, CA 91301-5104 Phone: (818) 880-9007 | Fax: (818) 880-9006
Diagnosing ALS ALS is a very difficult disease to diagnose. To date, there is no one test or procedure to ultimately establish the diagnosis of ALS. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:
electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV) blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine collection for heavy metals spinal tap x-rays, including magnetic resonance imaging (MRI) myelogram of cervical spine muscle and/or nerve biopsy thorough neurological examination For more information on the importance of a second opinion, click here.
These tests are done at the discretion of the physician, usually based on the results of other diagnostic tests and the physical examination. There are several diseases that have some of the same symptoms as ALS and most of these conditions are treatable. It is for this reason that The ALS Association recommends that a person diagnosed with ALS seek a second opinion from an ALS "expert" - someone who diagnoses and treats many ALS patients and has training in this medial specialty. The ALS Association maintains a list of recognized experts in the field of ALS. See ALSA CentersSM, ALS Clinics and contact your local ALSA chapter or the National Office.
also, search this site with "atkinson-barr"for the successful use of certain abx in cases of als that eventually turned out to be lyme. in this study certain abx were NOT good for a very small percentage of cases.
the actual study results have been posted here and, i believe on sci.med.diseases.lyme, and elsewhere on the web. i have no time to fetch this study for you right now.
Posts: 2708 | Registered: Feb 2005
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also, search this site with "atkinson-barr"for the successful use of certain abx in cases of als that eventually turned out to be lyme. in this study certain abx were NOT good for a very small percentage of cases.
the actual study results have been posted here and, i believe on sci.med.diseases.lyme, and elsewhere on the web. i have no time to fetch this study for you right now.
Posts: 2708 | Registered: Feb 2005
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liz28
Unregistered
posted
I'm in the middle ground. While the antibiotics that have helped me are VERY aggressive by mainstream medical standards, they are far more conservative than some of the protocols out there.
What really made a difference is using targeted antibiotics. A lot of these protocols were developed when the first order of business was to save people's lives, by throwing the kitchen sink at them. Everyone has different experiences, but I found that for myself, this approach could only go so far, and then the best route was to take a focused drug combination, usually of two different antibiotics, one after the other for Lyme and the co-infections.
I am currently in remission from Lyme, babesia and bartonella.
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posted
Thanks for all of the information. I have a good understanding of ALS. I have been going throught this for 2+ years so I have done the research on the disease and have been seen by an ALS institute of Neurologists locally.
I am confused as to why I would go to NY to get an accurate diagnosis of ALS/Lyme. I have gone to an ALS neurologist and she says ALS; I have gone to a LLMD and he says lyme.
I have a positive Bowen and Igenex WB, so why not treat for lyme and hope for the best. Certainly the ALS neuorologist has nothing to offer until I am in need of a ventilator, wheel chair, ect.
I am 32 as of May with a 3 weeek old baby boy. This is no time for me to take an ALS diagnosis and accept it. Sorry but with no known cause of ALS and not much in the way of reasearch on the cause as it may relate to undetectable stealth infections, I will take my chances with Lyme and Coinfection protocols and hope for the best.
Thanks again for the information; however, please spare me the torturous reading of the descriptions of an uncurrable disease.
Posts: 38 | From P-TownOR | Registered: Dec 2005
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I've had a ton of neuro problems along with arthralgias, and other sx. I've had good improvement with what I think is relatively agressive treatment...Bicillin 1.2mu IM once a week plus Ketek 400mg twice a day. This regimen continued for approximately 7-8 months.
Then the Ketek was DC'd and replaced with Tindamax (a cyst buster) 500mg twice a day. I'm improving at a faster rate now than before. I still have a ways to go, but I'm getting stronger almost every day.
Good luck to you.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
It's so different for each person but
6 months IV abx therapy and 2 years on oral follow-up cleared up alot of my neuro symptoms. I started to do detox methods that I felt some more improvements
3 years ago I couldn't have typed this. I was just about catatonic and very confused.
Now I am doing rife and will eventually add some herbs.
Take care and hope you can find your road to wellness.
make sure to talk over everything you read here first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi GotLyme,
Very sorry to hear the fix you are in. It seems like there hasn't been much direct response to your question about whether treatment should be aggressive or not.
That is the hardest question to answer. People with an ALS type of presentation do not respond consistently to treatment for Lyme. So, even though it is a serious stage, there is no one way to address it.
You certainly don't want to treat so aggressively that herxing, or drug reactions, cause things to go downhill. Extreme herxing can cause damage all by itself, so more is not always better in this case.
On the other hand, treatment that is not aggressive enough will allow the infection to continue to prgress, NOT what you want.
Finding the middle ground, for you, will require some trial and error. It sounds like you are in the very early stages of treatment, with not very much time under your belt. It isn't clear why your first doctor was giving up on you. Were they not Lyme knowledegable? Were you getting much worse with treatment?
Also, do you know what your new doctor's plan is? Even though an ILADS doctor, some have more experience with ALS presentation than others. I hope that yours has the experience, or at least the connections to consult. From all I hear, it is different than treating other forms of Lyme, and you want the best, at this point.
I hope the new doc is willing to consider treating for coinfections at some point. I have neurological Lyme that went untreated for many years before diagnosis. In the beginning of treatment, I tested negative for all the coinfections, but over time I have tested positive to everything except Babesia, and my doc suspects that, as well.
It seems like, as your immune system gets some of the burden taken off, it begins to produce antibodies to some of the other things it is fighting. For me, treating Bartonella has been the most important in helping my worst neurological symptoms.
Severe Lyme is something you are going to be treating for a while. You need to find an effective approach that lets you tolerate the treatment, while improving. For some, that means very low doses. For others, treating with a variety of medications. For many, it includes supportive and nutritional treatments to help your body get rid of toxins, both from the drugs, and any others that could be complicating the issue.
You will find lots of ideas here, but the only things that will matter, is what will work for YOU!
Hope you can find answers and a treatment plan that works for you.
In answer to your question, this is just my opinion based on hubby's experiences -- I think the more severe your neuro symptoms the more need for slower less aggressive treatment and I also think the greater the necessity for nutritional supplements especially antioxidants and brain bloodflow enhancers.
Hubby recently did IV Primaxin -- normal dose is 500 mg every 8 hours -- for him what is a normal 1 month supply took 3 months to work thru. We do the IV's ourselves at home. Started at 250 mg once per day -- worked up to 500 mg most days, but skipped days as needed. Did do a few days at 500 mg 2 times daily.
One of his most worrisome and scary symptoms at least to me did respond to even this low dose of antibiotics. He no longer has the episodes of what I termed transient quadriplegia -- might better be described as temporary paralysis. These happened a couple of times a week for probably a year. He would freeze up and could not move a muscle and frequently could not speak or only babbled nonsense during these episodes.
He has seizure-like episodes that require multiple daily doses of IV Ativan. Not at all unusual to have to disconnect the IV in the middle and administer IV Ativan. Actually with the Primaxin the reaction was more often about an hour after the IV. In the past -- a couple of years ago when we did IV Rocephin the reaction was much more immediate.
Hubby is slowly but surely getting better. His Parkinsonian tremor is not present 24 hours a day 7 days a week -- now more like 20 or 30% of the time. Actual seizures with loss of consciousness etc are mostly gone -- milder seizure-like episodes are still present, but are improving with Babesia treatment.
Hubby has never been on extended antibiotics longer than 4 months once for Babesia treatment. Otherwise during the last 3 years while in treatment he generally takes fairly low doses of antibiotics one at a time for a couple of months and then stops for at least a couple of weeks between different antibiotics.
Everyone of course has a different response to treatment and there is no one-size fits all answer. But I do believe that nonagressive treatment can work, but it may take longer.
This is just my opinion and not medical advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I have neuro lyme. That's how it presented, that's how it has stayed.
I've had it for a year and a half. It's pretty brutal, and I was hospitalized right after I contracted it. All tests (blood and CSF) came back red hot positive and I was only put on a six week round of 2gm Rocephin a day. (Via PICC line)
The Rocephin did nothing but kill my gallbladder, and make me critically anemic. I was OKd to go back to work and told to return to the ducks in 6 months. I waited the six months, only, jumped on a waiting list for an LLMD in the area.
When I finally got to an LLMD (15 months after my dx), he freaked!!! He couldn't believe I could still function. I had a severe stutter, I couldn't put my own clothes on, suffered from seizures, wasn't sleeping at all, couldn't remember my name couldn't eat, I could go on forever.
I was immediatly back in the radiology dept for another PICC line and have been on Primaxin for 2.5 months, and Clindamycin for a month. Previous to that, He had me just on orals, and I did a complete 180. I was dressing myself and everything.
I definitely think that the shorter treatment was an enormous waste of money. This long stuff is no walk in the park either, but I know how that it's actually working for me, so it's worth it.
You can PM me if you have any questions...
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
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