posted
i am beginning to think this is permanent damage from lyme. I have been in treatment since october 2003... i have just started zithromax. my llmd says that my treatment course is almost up with 8 more weeks yet my tremors are still hanging around.
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003
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SentByHim
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posted
It is possible that nerve dammage is not going to go away, but your brain can learn to route signals around the dammage it just depends on what is causing the tremmors. Have you been taking your Mg? Do you take zanaflex for the tremmors?? That is the only med that helps me with mine. I know that they come and go in my case and the zith did make them worse, possibly a herx type rx so I hope it will finally get rid of them all together. But the Mg will help the most with the neuro sx like the tremmors, at least in my case it did and does.
Sent
Posts: 1574 | From Port St Lucie, Florida, USA | Registered: May 2003
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treepatrol
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posted
I have been in treatment on and off since 2001. I had tremors but now I ever so slightly get a little tiny sshiver of a shake only when I do some hard physical labor. Hope that helps Hang in there.
------------------ Do unto others as you would have them do unto you.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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posted
I have suggested Mg a few times, but they seem to not think that it is necessary. I am gonna suggest it one more time
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003
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ConnieMc
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posted
Lazer, I told your mom about the progress I was seeing taking Mg. I take 200 mg Mg, 400 mg Ca, and 50 mg B6 4 to 6 times a day. 2 hours apart. Keep in mind neuro problems would be the last to get better. The nervous system is the slowest part of the body to heal. Feel free to write me at [email protected] and I can tell you more about what I am doing.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by lazerorca: I have suggested Mg a few times, but they seem to not think that it is necessary. I am gonna suggest it one more time
Iam taking mg 500mg a day it seems to help also taking cq10, gluecosamine,and of coarse bcompex,multi vitamin, acidophilis. I think helps I recover so much better after physical labor now. My wife and I just leveled 10 ton of 2rc gravel mix in my new parking lot yeah Iam doing alot better now.Hope this helps
------------------ Do unto others as you would have them do unto you.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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posted
my tremors are down 90% after six months after: zithromax + ceftin, then zithromax + doxycyclene. I also take vitamineral green, cordyceps, coq-10, and essential fatty acids.
peace
Posts: 12 | From chico, ca, usa | Registered: Jan 2005
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posted
Lazer.... I'm sorry you're still having the tremors. I'd be willing to bet they'll go away with proper treatment. Your LLMD should be willing to treat you until you are well.
Get the Mg....don't wait for a dr to say "OK".... we have to take charge of our own health.
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
lazerorca,
Neurological problems can not always be fixed, not even lyme ones no matter what people want you to believe. We are all so very different and there are some very heavy demands placed on our doctors to heal everything. They do what they can but they can't do everything. For maximum results, you have to try to do everything that you can as well to effect any positive changes that may be made in your health. Even then, unfortunately, there are no guarantees.
If you want to take magnesium then you can go to a health store and purchase it. It does not have to be IV to work. Marnie says to stay away from magnesium oxide and I would follow that advice. I take magnesium malate and I'm happy with it.
Over a year ago I had pretty bad tremors and they even persisted past antibiotic treatment. As I said, antibiotics can't fix everything. There are some things that have happened to us that are more along the lines of 'damage' that we have to make adjustments for.
One thing that, I believe very strongly now, is that a great many of us are extremely susceptable to the chemicals added to our foods. These chemicals are called 'excitotoxins' because they overexcite the nervous system. An overexcited nervous system would produce many symptoms, of which, tremors would be very likely.
Last year, my tremors were so bad that a lot of times I did not want to write anything in front of anyone because my handwriting showed the tremors and it looked so sloppy. It was embarrassing and I could not seem to make it stop no matter what I took.
As I was researching, trying to figure out what was going on with me in another area, I stumbled on some things that finally helped me make the connection that I was suffering from the toxins in the foods I was eating. Toxins is a light word since the chemical additives are not food they are actually poisons.
Most healthy people can handle these 'additives' but those who have suffered any form of brain injury may not. Many of us have had brain swelling which seems to make the blood brain barrier more permeable, allowing more toxic chemicals to seep through that would not have been able to in the past. That is not fixable. Instead, you have to change the way you eat to avoid all foods flavored and/or preserved by man. You have to switch to whole, natural foods which I am very certain will be a very challenging experience for a college student.
Anyway, after a great deal of research I realized that my body had no ability to handle these excitotoxins which are hidden in almost all of your foods. I went cold turkey off of processed foods and went into withdraw for a week with worse headaches, etc. However, after that, a great many of my neuro symptoms improved as well as my depression and, amazingly, my tremors are completely gone now. Now, that is not to say everything is totally gone and cleared up because it is rare for neurological problems to completely clear once they have started. However, they are not nearly as severe now and it is nice to see that my writing is no longer shaky.
Please go to www.truthinlabeling.org and read up on MSG and the neurological problems it can cause. There are links to show you what foods it is in (everything!) and the names of the ingredients it is listed under. If you want something more scientific then purchase the book "Excitotoxins" by Russell Blaylock. It is very well researched and very informative.
It's not easy eating this way but I can tell when I have lapsed and eaten foods like the rest of the population. A lot of times I have a day or two delay but other times I can feel the effects of these toxins within 10-15 minutes of consuming a food I should have avoided. I no longer use any conventional flavorings or spices on my foods. I buy whole spices, nothing mixed. For a salad dressing I use lemons or limes mixed with flaxseed oil and a number of spices.
I hope this helps. If nothing else, try it for 3-4 weeks. You need at least a week to get most of the toxins out of your system. Over the next several weeks you should get an idea of whether or not this is helpful for you. Stay away from mushrooms and tomatoes during this time because they are high in glutamic acid which is something your want to avoid while you are testing yourself to see if you have improvement.
Angie
PS djonathann,
CoQ10 and, potentially, the fatty acids, help to block the uptake of glutamic acid which would help to reduce tremors and other neuro symtoms. Magnesium is also good to take for its protective benefits but I think CoQ10 is more protective than most supplements.
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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posted
yeah I have been diagnosed with essential tremor. so yeah unfortunately this isn't going away. it is getting worse. the medication they have given me for ET finally has alleviated my symptoms tho
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003
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Let me preface my response by saying this is my amateur opinion. I do understand tremors can be caused by many different things.
Naturally, I do not know the root cause of your tremors. But when I see tremor in a young person----infection is always in the back of my mind.
I was diagnosed with "essential tremor," so yes I do understand there are tremors which show no apparent cause. (Been there, done that.)
Have you been treated or even been given a "trial-treatment" for coinfections such as Bartonella, Babesia, and mycoplasma fermantans? (You don't have to answer-----just putting out some information for you.)
If the tests are positive that's a great edge to have, but if the tests are negative---------you could still have an infection.
Try to keep in mind that having a co-infection does not mean you'll have every symptom out of the textbook. You may only have 1 symptom.
I need to go find the Lymenet link for you, but it talked about, if you have Parkinsonian type symtoms -----tremors (that's me, too) then suspect Bartonella or Brucellosis.
In one study I read, Bartonella feeds off five amino acids----not glucose. No wonder it results in severe neuropsych problems as amino acids are our neurotransmitters.
Mycoplasma fermantans can also cause neuro symptoms. Don't underestimate mycos. Of course, can't forget Babesia.
I don't pretend to have any fast & hard answers for you, but if you still have symptoms------always consider co-infections or m. fermantans.
It is a known fact that symptoms of the co-infections overlap greatly with LD. How you tell the difference between co-infections is beyond me! Some keep meticulous diaries when they're on meds for co-infections.
I realize the diaries are subjective, too.
If I've learned anything from this board it is to at least request "trial-treatment" for coinfections or mycoplasma-----when you still have symptoms.
I was diagnosed April 2003, and have been on continuous ABX. I'm on minocycline for my brain. I'm totally astounded of the die-off I'm getting at only 50 mg Mino daily.
I keep trying to work up very slowly to the 200 mg daily maximum dose, but I have to stay at 50 mg a bit longer.
I know the Mino is hitting something. My Labcorp lab was negative for Bartonella. Tincup has said that Igenex Lab does miss some Bartonella, but that's understandable with different strains.
For a trial treatment for Bartonella-----I'm going to ask about Rifampin at my next appointment and perhaps, it will be decided to add to this to the Mino. Don't know yet.
Bartonella can be found in the spinal fluid.
Prelyme diagnosis: I had a spinal tap which relieved the pressure in my head.
(They didn't bother to measure the "opening pressure" which would have shown inflammation or infection). I had no after tap headache. I was better & immediately slept. It was more like a therapeutic spinal tap in my particular case.
I regained a normal sleeping pattern for about 2 weeks and then poof it was gone.
I don't care what anybody says----you cannot talk me out of it: Something is still in my spinal fluid & it's causing problems. Mino also hurts the back of my head (an aching, gnawing, severe pain) & left ear pain.
My husband with LD also worked on a dairy farm in high school from which you can acquire Bartonella.
It is so hard putting everything together to make sense----I know & I do understand your frustration.
All the IV glutathione in the world is not going to cure a person of a serious underlying infection until the root cause is treated.
The reason I say that, is they are using IV glutathione to detoxify the brain in Parkinson's patients with good success.
But yes, I'm still a huge proponent of IV glutathione. Some protocals add phosphatidylserine to the IV; I'm sure there are other things to add in, as well.
I plan to do a lot of detoxifying and building up my system for years to come after every co-infection is treated.
Complete treatment of co-infections will enable you to fight the LD more completely. I'm sure you know, co-infections will stop LD progress cold.
Here is the website about the IV glutathione detox:
I just now read that the meds are helping your essential tremor. I'm so glad you're getting some relief. It helps the quality of life so much. It's exhausting to have a tremor.
Anyway, here's that link I referred to in my previous reply:
Topic: For Those of you with treatment failures..consider Brucellosis.
There is a ton of information on this thread which is 2 pages long. Don't let the word "Brucellosis" throw you into thinking it only happens in cattle-------because you'll learn a lot just by reading this.
Please understand, I'm not saying you have Brucellosis; just wanted to provide some additional information.
Take Care, Jan
[This message has been edited by Recipegirl05 (edited 17 January 2005).]
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
If you are now sensitive to the chemicals in your food it does not matter whether you are a treatment success or a treatment failure, your body is still going to react abnormally. http://www.truthinlabeling.org/UnderstandingNeurodegen.html
Understanding the unknowns of neurodegenerative disease
There is a relatively new area of research for which the food industry, to date, has had no comment, contradiction or excuse. These are studies which link MSG to neurodegenerative disease.
Discovery that MSG caused lesions in specific areas of the brains of laboratory animals and concomitant proliferation of neuroendocrine dysfunction came through interest in the brain. It was brain research that identified glutamic acid as a possible, probable, and now certain neurotransmitter, transmitting nerve impulses. Likewise, it was study of the brain that suggested that a group of these neurotransmitters, specifically the excitatory amino acids (EAA), possess properties that very likely play an important role in the development of certain neurodegenerative diseases.(172, 229-236) Glutamic acid and aspartic acid are among the EAA that have great potential for involvement in neuro-degenerative disease.
At the present time, significant headway in the study of neurodegenerative disease is being made. "Three EAA receptor subtypes that mediate excitotoxicity have been identified, drugs with anti-excitotoxic actions have been discovered, and evidence for the complicity of both exogenous and endogenous excitotoxins in neurodegenerative disorders has begun to unfold. There now is substantial evidence for the involvement of each EAA receptor subtype in one or more human neurodegenerative syndrome, and recent findings suggest that EAA receptors are sensitive mediators of excitotoxicity at both ends of the age spectrum."(231) All forms of MSG are exogenous sources of glutamic acid. This includes the MSG produced when protease enzymes or reaction flavors are used in manufactured or otherwise processed food. Processed free glutamic acid (MSG) always contains free glutamic acid, an EAA.
It has been suggested, and there is evidence to support the suggestion, that the EAA might well play a role in the following neurodegenerative conditions: sulfite oxidase deficiency; epileptic, hypoglycemic and hypoxic/ischemic brain damage; central nervous system trauma; dementia pugilistica; domoate dementia; olivopontocerebellar degeneration; neurolathyrism; amyotrophic lateral sclerosis, parkinsonism, Alzheimer's dementia; Huntington's disease; and Wernicke/Korsakoff syndrome.(231) Together, these conditions are referred to as the glutamate cascade.
Let the article entitled Memantine (Namenda) for Moderate to Severe Alzheimer's Disease serve as an example.
March 15, 2004 American Family Physician STEPS Memantine (Namenda) for Moderate to Severe Alzheimer's Disease
ADRIENNE Z. ABLES, PHARM.D., Spartanburg, South Carolina
Synopsis: Memantine (Namenda) is an N-methyl-d-aspartate (NMDA) receptor blocker indicated for the treatment of moderate to severe Alzheimer's disease (AD). The NMDA receptor is activated by glutamate, the primary excitatory neurotransmitter in the brain. Overstimulation by glutamate may result in neuronal damage and has been implicated in neurodegenerative disorders such as AD. Memantine is the first pharmacologic agent approved by the U.S. Food and Drug Administration for the treatment of moderate to severe AD.
REFERENCES 172. Olney, J.W. Excitatory neurotoxins as food additives: an evaluation of risk. Neurotoxicology 2: 163-192, 1980.
234. Pomara, N., Deptula, D., Singh, R., LeWitt, P.A., and Banay-Schwartz, M. Excitatory amino acid concentrations in CSF of patients with Alzheimer's disease. Biol Psychiatry 27: 91A, 1990.
235. Zukin, S.R., and Javitt, D.C. The NMDA-PCP theory of schizophrenia: implications of receptor interactions. Biol Psychiatry 27: 91A, 1990.
236. Olney, J.W. Excitotoxins and neurological diseases. Proceedings of the 11th International Congress of Neuropathology, Kyoto, Japan, September 2-8, 1990.
Spencer PS, Kisby GE, Ludolph AC. Long-latency neurodegenerative disease in the western Pacific. Geriatrics. 1991 Aug;46 Suppl 1:37-42. Review. PMID: 1894143 [PubMed - indexed for MEDLINE]
Spencer PS, Kisby GE, Ludolph AC. Slow toxins, biologic markers, and long-latency neurodegenerative disease in the western Pacific region. Neurology. 1991 May;41(5 Suppl 2):62-6; discussion 66-8. Review. PMID: 2041595 [PubMed - indexed for MEDLINE]
Spencer PS. Guam ALS/parkinsonism-dementia: a long-latency neurotoxic disorder caused by "slow toxin(s)" in food? Can J Neurol Sci. 1987 Aug;14(3 Suppl):347-57. Review. PMID: 3315142 [PubMed - indexed for MEDLINE]
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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twoangie
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posted
I highly recommend going to the link at the bottom of this page and selecting "speaker abstracts" when you get to that link. There is some very informative information in those abstracts. http://www.truthinlabeling.org/Glut.html
The Glutamate Cascade
There is copious literature on addiction, stroke, epilepsy, degenerative disorders (Alzheimer's disease, Parkinson's disease, and ALS, for example), brain trauma, neuropathic pain, schizophrenia, anxiety, and depression, seemingly diverse disease processes of the central nervous system that appear to be associated with the "glutamate cascade."
In May, 1998 a conference was hosted by the National Institutes of Health as a vehicle through which researchers might share what they knew about the relevance of glutamic acid to these various disease processes. (National Institutes of Health, The Glutamate Cascade; Common Pathways of Central Nervous System Disease States. Conference. Bethesda, Maryland, May 3-5, 1998)
In typical FDA, EPA, USDA fashion -- representing the interests of the glutamate industry -- the NIH refused to consider discussing the role processed free glutamic acid (MSG) in causing or exacerbating these disease processes.
+To access information about the conference:
Go to: http://www.nida.nih.gov Under "Information for Researchers and Health Professionals" click on "Meetings" The page will be titled "What's New." On the right is a box that says "What's New Contents" Click on "Past Meeting Summaries" Click on "1998" Scroll down to "The Glutamate Cascade: Common Pathways of Central Nervous System Disease States - Program Book - May 3-5, 1998." Click on "[Program Book]" http://www.nida.nih.gov/MeetSum/Glutamate/Index.html
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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twoangie
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posted
I pulled this abstract out for you:
GLUTAMATERGIC MECHANISMS IN THE CAUSE AND TREATMENT OF PARKINSON'S DISEASE
J. Timothy Greenamyre, M.D., Ph.D. Emory University
The glutamatergic system may be important in the pathogenesis and the pathophysiology of Parkinson's disease (PD). A defect in mitochondrial energy metabolism has been found in PD, and we and others have demonstrated that mitochondrial dysfunction can lead to secondary or "weak" excitotoxicity. Metabolic impairment depletes ATP, depresses Na+/K+-ATPase activity and causes graded neuronal depolarization. This relieves the voltage-dependent Mg++ block of the NMDA receptor and allows innocuous levels of glutamate to become lethal. Mitochondrial impairment also disrupts cellular calcium homeostasis. Increased activation of the NMDA receptor, in turn, leads to further mitochondrial impairment and damage. In large part, this occurs because calcium entering a neuron through NMDA receptors has "privileged" access to mitochondria where it leads to free radical production and mitochondrial depolarization. Thus, there may be a feed-forward cycle wherein mitochondrial dysfunction causes NMDA receptor activation which leads to further mitochondrial impairment. In this scenario, NMDA receptor antagonists may be neuroprotective.
Once PD is established, it is clear that several glutamatergic pathways, including the corticostriatal and subthalamofugal projections, become overactive. This causes regulatory changes in basal ganglia glutamate receptor subunits. Moreover, it suggests that glutamate receptor antagonists may be useful as antiparkinsonian medications. We have shown in MPTP-treated parkinsonian monkeys that NMDA and non-NMDA antagonists have antiparkinsonian efficacy. They may also suppress the involuntary movements that are associated with chronic dopaminergic therapy. Several clinical trials are now underway to test whether manipulation of the glutamatergic system has beneficial effects in PD. Initial results should be available by the end of the year. (Supported by NS33779, AG11755, AG14648 and the Huntington's Disease Society of America.)
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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posted
yeah I am pretty much spent on my lyme treatment. and i am pretty sure I don't have lyme disease anymore. I am no medical doctor, but the treatment I received and am still receiving has gone above and beyond normal medical suggestions and even above and beyond the treatments LLMDs are offering. i was on IV antibiotics for 9 months and there was no tremor relief. it got worse actually.
I show classic signs of ET and it is affecting and progressive in the normal expected pattern of ET. the ET medications were working very well at the beginning although it is beginning to wane a bit.
other symptoms are pretty much gone like the fatigue and so on. so things are looking up for me
Posts: 255 | From Greenville, NC, USA | Registered: Oct 2003
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twoangie
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Member # 1636
posted
lazerorca,
Please do try to change your diet for a while and see what happens. Whole foods and no commercially prepared drinks either. Avoid any health supplements which contain L-glutamine because it is a close relative of glutamate. Not only is it an individual supplement but it is also in a lot of multivitamins as well as protein powders. Review the ingredients list for it. It is only in hindsight that I now realize that my neuro symptoms were worse when taking that supplement as well.
You don't have to try my suggestions but why not? My neuro problems are not all gone and, since neurological problems generally represent some original damage to the CNS, it is unlikely that most of these things will ever simply disappear even if I do ever clear this infection. However, there are things we can do to treat ourselves better and reduce these symptoms. Avoiding glutamate and other excitotoxins is something we can do easily. It has had the added benefit of getting rid of my tremors.
By the way, you can never assume that the infection is totally gone. I did 1 year of IV antibiotics and 1.5 years of oral antibiotics. When I first became ill I had a small rash on the inside of my right ankle. After all those antibiotics, after 2.5 years on them, when I came off, the rash returned in the same place. When I went back on antibiotics temporarily, the rash quickly disappeared.
Each time I go off antibiotics this rash comes back. For the most part, I've been off antibiotics now for over a year and the only time this rash will go away is if I do a short course of antibiotics...then, when I stop, it returns. In fact, I now have two EMs and the start of a 3rd. Amazing.
This is a really complicated and persistent infection. While I hope you have been fortunate enough to completely clear it...I have to wonder if that will turn out to be the case in the long run. However, it is very good to hear that you no longer have fatigue. That is a huge improvement and one of the most debilitating symptoms for so many of us. So, congrats on getting rid of that and I hope you continue to improve!
Angie
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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