Helpful Information About Lyme Disease

[wasabi]

I have chronic Lyme disease, so I just wanted to start a thread where I could post helpful information about Lyme disease. Any replies would be welcome too.

[wasabi]

This is an article which provides some good general information on Lyme disease - Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Bourne Illnesses. Here are some excerpts:

From Introduction:
To me, "Lyme Disease" is not simply an infection with Borrelia burgdorferi, but a complex illness potentially consisting of multiple tick-derived co-infections. In later stages, it also includes collateral conditions that result from being ill with multiple pathogens, each of which can have profound impact on the person's overall health. Together, damage to virtually all bodily systems can result. In addition, it is possible to see latent infections reactivate, especially viruses of the Herpes type.

From Background Information - General Measures:
Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but most need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared.

From Lyme Disease Treatment Guidelines - Piroplasmosis (Babesiosis):
Piroplasms are not bacteria, they are protozoans. Therefore, they will not be eradicated by any of the currently used Lyme treatment regimens. Therein lies the significance of coinfections- if a Lyme patient has been extensively treated yet is still ill, suspect a piroplasm.

From Lyme Disease Treatment Guidelines - Course During Therapy

It has been observed that symptoms will flare in cycles every four weeks. It is thought that this represents the organism's cell cycle, with the growth phase occurring once per month. As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks. If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued.


http://www2.lymenet.org/domino/file.nsf/UID/guidelines

I would like to make one comment. The author of this article observes that "it is possible to see latent infections reactivate, especially viruses of the Herpes type." I wonder if latent infections such as measles and chicken pox could also be reactivated and cause some of the skin rashes that can occur with Lyme disease.

[wasabi]

Here is an eye problem that seems to be caused by Lyme disease. I know that specialized scans show that I have a thinner, larger than normal "cup" where the optic nerve attaches to the retina. My optometrist says that because of this, I am borderline glaucoma even though the intraocular pressue in my eyes is well within normal. Is it possible that this problem is being caused by Lyme disease which causes increased intracranial pressure? I'm waiting to hear back from my optometrist.

I wonder if a lesser amount of increased intracranial pressure (not enough to cause persistent headaches, but chronic) causes the tinnitus that is often associated with Lyme disease. And where does this increased intracranial pressure come from? Is it an inflamation due to the bacteria, or could it be caused by increased muscle tension along the jaws, neck and spine, or both?

http://pediatrics.aappublications.org/cgi/content/full/112/6/e477

[wasabi]

Here is some good information about Lyme disease and dogs. This article contains a very good description about the deer tick and it's involvement in Lyme disease.

http://www.marvistavet.com/html/body_lyme_disease.html

[wasabi]

Reasons for the Survival and Persistence of Lyme Disease Bacteria (cystic forms, blebs, L-forms, etc.) -
A Bibliography with Highlighted Full Abstracts

Could the following researchers have discovered reasons for the survival of the Lyme disease bacteria in some patients even though seemingly adequate antibiotics were used for treatment?

http://www.geocities.com/HotSprings/Oasis/6455/persistence-reasons.html

[wasabi]

I don't think it is good for Lyme disease sufferers to consume alcohol. This was Wildcondor's experience (See the link to Wildcondor's story on my post to the Lyme Update Thread) This is my experience. I have been getting better for the past 8 days or so using sea buckthorn in addition to my regular supplements. Last night I had about 9 ounces of wine (Being gluten intolerant, having a couple of glasses of wine on Friday evenings is a special treat). This morning, the numbness on the left side of my face was definitely worse that the day before.

It makes sense. Among other things, Lyme disease produces neurotoxins that are bad for your brain, your nerves and your liver. Alcohol is also a neurotoxin that is bad for your brain, your nerves and your liver.

I guess I will just have to give up alcohol in addition to gluten and dairy :(

[wasabi]

One should be cautious about using corticosteroids if one is suffering from Lyme disease because corticosteroids can suppress the immune system. This is not what you want to happen if your body is fighting an infection:

http://www.lymenet.de/literatur/steroids.htm

[wasabi]

Interesting article. I think people should avoid aspartame regardless of its possible connection to Lyme disease:

http://www.bio.net/bionet/mm/toxicology/2000-December/003043.html

Here is an article on excitotoxins in general:

http://www.whale.to/a/blaylock5.html

[wasabi]

Ehrlichiosis is one of the bacteria that can be transmitted by the deer tick in Lyme disease. Here is a short article about ehrlichiosis:

http://www.dhpe.org/infect/ehrlichiosis.html

[wasabi]

Babesia is parasitic infection that can be transmitted by the deer tick in Lyme disease. It is a protozoa that infects red blood cells and causes malaria like symptoms. Here are some relevant sites:

The Tick Research Laboratory - Human Babesiosis:
http://riaes.cels.uri.edu/resources/ticklab/babesia.html

Brief general information with a picture of babesia infected blood cells:
http://www.vetmed.ucdavis.edu/VBDP/babesia.htm

Infection with a Babesia-Like Organism in Northern California:
http://content.nejm.org/cgi/content/abstract/332/5/298

Babesia Infections in Switzerland?
http://www.ilads.org/swiss.html

There is also a book by James Schaller, MD titled - "The Diagnosis and Treatment of Babesia"

[wasabi]

http://www.ctlymedisease.org/pdf/Bb_AlzheimerJAD.pdf

[wasabi]

Diet and Recovery from Chronic Disease By Ron Schmid, ND:

http://www.westonaprice.org/moderndiseases/chronicdisease.html

[wasabi]

http://www.tldp.com/New%20Articles/Universal%20oral%20vaccine%20Part%203.htm

[wasabi]

"The Neuropsychiatric Assessment of Lyme Disease" - particularly late stage Lyme Disease:

http://www.mentalhealthandillness.com/tnaold.html

[Chemar]

this is all excellent information wasabi...thank you.:)

[wasabi]

Lyme disease is probably under-reported, but this information is useful nonetheless:

http://www.cdc.gov/ncidod/dvbid/lyme/ld_rptdLymeCasesbyState.htm

Chemar, thank you for your encouragement

[wasabi]

Lyme Disease - Survival in Adverse Conditions (in PDF format):

http://www.personalconsult.com/articles/lymediseaseadverseconditions.pdf

This site has a number of good articles on Lyme disease. Just click on articles or index of articles and find the section of articles on Lyme disease.

[wasabi]

This is a very technical article. I am posting a link to it because it demonstrates some of the amazing adaptability of the Borrelia burgdorferi bacteria. An awesome pathogen. I wish it wasn't in me:

http://jb.asm.org/cgi/content/full/183/19/5544

[wasabi]

"I cannot emphasize enough the behavioral significance of the Jarish-Herxheimer reaction. As part of this reaction, I have seen and heard numerous patients describe becoming suddenly aggressive without warning. I can appreciate skepticism regarding this statement. How can this be explained? Like many other symptoms seen in Lyme disease, it challenges our medical capabilities. In view of this observation, I advise that antibiotic doses be increased very gradually when suicidal or homicidal tendencies are part of the illness.

Although I have discussed the significance of depression and suicide associated with Lyme disease, I would like to [say that] treatment does help. Combined treatment which addresses both the mental and somatic components of the illness significantly improves the overall prognosis. This is supported by clinical observation and laboratory research showing antidepressant treatment improves immunocompetence. It has been demonstrated in vitro that antidepressants which act on the serotonin 1A receptor (most antidepressants) increase natural killer cell activity. In addition, there are undoubtedly other indirect effects on the immune system through other neural or neuroendurocrine and autonomic pathways. To state this more concisely - antidepressants can result in antibiotic effects, and antibiotics can have antidepressant effects."

http://www.mentalhealthandillness.com/Articles/LymeDepressionAndSuicide.htm

[wasabi]

"After 13 years of suffering with Lyme disease, a possible cure has been stumbled upon. A cumulative effect of much research has produced the possibility that salt and vitamin C may be all that is needed to beat this elusive illness."

http://www.lymephotos.com/

[wasabi]

A very complete list of symptoms. "Lyme Disease: Symptoms and Characteristics - A Compilation of Peer-Reviewed Literature Reports."

http://www.personalconsult.com/articles/lymediseasesymptoms.pdf

[wasabi]

This link provides a quick overview of Lyme disease:

http://www.digitalnaturopath.com/cond/C351537.html

[wasabi]

Someone has posted to a discussion board on this topic:

jhttp://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=029688#000014

[wasabi]

This is one reason why I take Neprinol and get plenty of omega-3 fats:

http://www.drcharlescrist.com/hypercoagulation.htm

[wasabi]

In this study, Dr. Lane demonstrates that in parts of California, as many as 36% of the people have been bitten by ticks that are capable of carrying Lyme disease (i. pacificus). He did this by testing for the antibodies in the blood of California residents against the tick's specific saliva:

http://www.ajtmh.org/cgi/reprint/61/5/850.pdf

[wasabi]

General statistical information:

http://www.cdc.gov/MMWR/preview/mmwrhtml/ss4903a1.htm

[wasabi]

Emergence of Lyme disease in Hunterdon County, New Jersey, 1993: a case-control study of risk factors and evaluation of reporting patterns:

http://www2.lymenet.org/domino/abstract.nsf/93f8e80bc39b4757852565bd00022dfd/c05c354c9e215ed5852565e10005bf89?OpenDocument

[wasabi]

http://www.newmediaexplorer.org/chris/2005/09/22/lyme_disease_wiped_out_by_vitamin_c.htm

Here is an article about the need to take vitamin C close to bowel tolerance for therapeutic effect:

http://www.orthomed.com/titrate.htm

[wasabi]

A small sample. If you don't count one person who couldn't go to full dosing levels because of kidney and liver problems and one person who probably doesn't have Lyme disease, the feedback was very positive:

http://www.remedyfind.com/treatments/52/1397/

[wasabi]

General information on Lyme disease, including recent treatment options.
Link:

http://www.autoimmunityresearch.org/lyme-disease/

Book:

"The Top 10 Lyme Disease Treatments," by Bryan Rosner

[wasabi]

"There are many Lyme disease cognitive symptoms that cause rushes of panicky feelings. The most typical is what I call "Lyme urgency." This is a psychological feeling which is related to a need to drive oneself to attend to tasks, combined with a feeling of concern if one doesn't act on every task at the moment that one thinks about it. What results is less overt panic at the time and more chaos in the long run. The distraction that one experiences from this compulsion leads to unfinished tasks and then exhaustion as one works longer and later to fix the chaos from all the interruptions. This, in turn, connects the panic to depression in many people."

I wouldn't say I have panic attacks but "Lyme urgency" does describe my behavior and the unfinished tasks and the chaos. Very often, just before leaving for vacation, I just "have to" work on some things that I have been putting off for weeks and months. I only seem to be able to single-thread my activities. I have difficulty prioritizing and planning and coordinating multiple activities in a way that is most efficient and effective. And my lack of effectiveness does make me angry with myself and depressed at times. I thank God for my wife who is able to look at the good I do as well as the chaos and lack of accomplishment in other areas:

http://www.thehumansideoflyme.net/viewarticle.php?aid=37

[wasabi]

Here is a paper that I believe was the beginning effort which led to the book, "Lyme Disease and Rife Machines":

http://hometown.aol.com/theskyking/myhomepage/profile2.html

Here are a number of positive reports of Lyme sufferers who used Rife machines:

http://members.aol.com/theskyking/myhomepage/listings2.htm

[wasabi]

The Dirty Truth About Lyme Disease Research:

http://www.angelfire.com/biz/romarkaraoke/Lymetruth.html

[wasabi]

Here is a site that has a lot of good information about Lyme Disease (also a lot about caring for reptiles and amphibians if that's your interest):


http://www.anapsid.org/lyme/

[loraina]

i have suffered many years with lymes disease. when i got lymes, i had the bulls eye rash as my friend did. we were very sick. i didn't have my insurance then, so all i could do was take erythomycin 33 mg. 3 times a day for 10 days. i am allergic to the docy. i have since then had all kind of weird and terrible pains, burnings, confusion , you name it. my vit d level is now very low at a 10. that scares me. i also have diabetes. plus every time the dr's do a test for lymes it comes back negitive. now they are sending me to a rhumatoligist. will i get help or will they even believe me. i wonder. if i don't have lymes, i wish some one would please tell me what that big bulls eye rash was and why i was so sick about 3 weeks after having a tic removed. we live in the country on a lake and deer walk thu our yard all the time. i would dearly love to be able to do the things i did before i got sick. i first got lymes in 1993, then it was better after 1998, then i was reinfected in 2003. any help? ty and bless you all loraina

[shiney sue]

Thank you so much,i truly appreciate all of the imformation. :) Sue

[wasabi]

Loraina,

As you no doubt know, there is no proven way to deal with chronic lyme disease. I can only tell you what I am doing that seems helpful for me. Unfortunately, the stuff I do is either relatively expensive, or potentially hard on the body.

I am doing the salt/vitamin C therapy (see my post, "Salt and Vitamin C for Lyme Disease). I have problems with high blood pressure if I don't make sure to drink lots of water. I would not recommend this for you since you have diabetes. If you do decide to go this route, be sure your doctor approves and monitors you. I would think that extra vitamin C (without the corresponding amount of salt) would be helpful and safe for you. I am also helped a lot by sea buckthorn - I am taking the tea, and oil from the seeds and oil from the fruit of the sea buckthorn plant. I also consume a cultured milk product called kefir along with undenatured whey protein powder (the one I use is "Fat Flush whey protein powder"; it's important to use whey protein powder that is undenatured to preserve the whey components that help your immune system to fight bacteria). Finally, I am planning to purchase a Rife machine. I just haven't been able to decide which one yet.

I wish you all the best.

[Buttons]

Hi wasabi, I've been reading some of your info on the fibro forum.

I've also self-diagnosed myself with chronic Lyme (infected about 9yrs ago). Last year I tried the salt/c therapy & it was the one thing that gave me improvement. However I did get concerned about my blood pressure so stopped taking it. I was diagnosed with type 2 diabetes about the same time of my spider bite (yes,spider-not tick). Just curious if you have a link for me to read about why the salt/c shouldn't be used if diabetic cause I've never heard this before (or I forgot).

Thanks for sharing all the research you do!
Buttons

[wasabi]

buttons,

I don't have a specific link for you to go to. I just believe that one's body has to be in relatively good condition to handle 12-15 grams of salt per day. Also, cardiovascular problems and kidney problems (many patients on dialysis are there because of kidney failure caused by diabetes) seem to be strongly associated with diabetes, so I don't think the salt/c treatment for someone with diabetes is a safe thing for someone to try without being under close supervision by a doctor.

[Buttons]

OK, this makes sense. I'd be sent off to the loony bin for sure if I ever mentioned anything I've taken for the bug invasion.....cause we don't have Lyme disease in WA state,and we don't have any harmful spiders either!:rolleyes:

I did make a poultice for the bite on my foot when it decided (after many years), to bother me again. I got the lesion to raise up considerably & was able to get liquid from it,had it cultured of course,but I made no mention of perhaps culturing for mycoplasma....nor did I admit to the foot doc that I had used salt on my foot.

Are you seeing any improvements using salt/c? It really helped my arthritis in my knees & gave me more energy than I ever expected to have again. One weird thing that nobody else ever mentioned: about 1/2 hr after finishing off my glass of water/salt/c, my feet would both be freezing cold. Any theories on that?

Buttons

[wasabi]

Buttons,

It's hard to attribute any improvements specifically to salt/vitamin c since I am taking many other things as well. I believe the sea buckthorn products are helping me a lot too.

Overall, I am feeling less tired. My joints don't hurt especially much any more. I notice it most in my fingers. I think the salt/vitamin c along with Ionic Fizz Magnesium Plus and self massage have resulted in relaxing muscles in my neck and back and hips that have been sore and very tight for years. I don't slur my speech and my thinking is clearer. My memory is only somewhat improved. I think my hair loss has slowed quite a bit, although from time to time it increases for a while (due to the cyclical nature of Lyme?) My overall mood is much better.

I don't notice that my feet get extremely cold right after taking salt/vitamin c. I don't know what could cause that.

[wasabi]

Here is a great resource for Lyme disease information:

http://www.canlyme.com/

[MollyB]

Hi - I'm new here and I have a question. Has anyone with chronic lyme had burning in their head? I have had a nerve conduction test and doc says I have small nerve fiber neuropathy. I also have burning that kind of flicks around anywhere on my body. Been tested for lyme a few times and waiting to here again if I have it.