Sorry if I am not following protocol. Today is my first time ever posting to this site. My hope is that someone in the Lyme's community can give me some guidance.
My cousin is in the late stage of Lyme's. She has tried scores of different treatments. She has drifted from one LLMD to another. Nothing is working. This has been going on for 6 years! Now the little, devil spirochetes (I call them selfish corkscrews) have drilled their way into her central nervous system. Her autonomic nervous system has been severely compromised, as well. Every waking moment is torment for her. All sensory input is painful (light, sound, touch). She has severe anxiety, panic attacks, chronic insomnia, episodes of psychosis, cognitive lapses, paranoia, depression. Her life, in short, is a living nightmare.
What can be done in the short run just to bring some (temporary) relief? Would there be any wisdom to, for example, just knocking her out with a heavy duty narcotic for a few days in the hopes that her system might ``re-boot'' as the drug wears off? Does anyone have ANY ideas / suggestions? Has anyone been through this?
What is the best long-term plan of action? Many of her difficulties can be traced to the fact that her body seems to be unable to dump toxins. What are the best de-tox strategies?
What is the best way to gain the upper hand on the infection? She tried the IV at 1 / 100th the normal strength and it nearly did her in. The latest thing her doctor is considering is something called IPC. She is willing to do anything. Please help.
Posted by Keebler (Member # 12673) on :
- Welcome. What a nice cousin you are. Protocol here is fine as you've posted easy to read short paragraphs.
I should have never really looked at your post as I'm too tired to really reply but others will be along.
As for "a heavy duty narcotics" they could severely impair your cousin's liver and the liver is already very compromised by lyme toxins, themselves.
I, too, deal with all that sensory stuff. Magnesium and Fish Oil are the two best helpers. I have to leave it at that for now.
I'll be back and post a composite note about Corydalis, a pain-reliever herb that helps calm the sensory stuff and calms pain, too.
I'll check back in when I either get a second wind or tomorrow.
Good luck. -
Posted by Keebler (Member # 12673) on :
- Corydalis can also help calm the brain. This is the same kind of amygdala kindling that occurs with neuroborreliosis.
The protective effect of dl-tetrahydropalmatine against the development of amygdala kindling seizures in rats.
Lin MT, Wang JJ, Young MS.
Department of Medical Research, Chi-Mei Medical Center, Yung-Kang City, Tainan Hsien 710, Taiwan. [email protected]
The influence of dl-tetrahydropalmatine (THP), an active component isolated from a Chinese herbal medicine corydalis, was tested on the development of electrically kindled amygdala.
The seizure activity was quantified by a ultrasonic system for vertical motion measurements. Intraperitoneal injection of THP (20 or 30 mg kg(-1)) 30 min before applying the daily kindling stimulus prevented the development of the kindling process.
The behavioral seizure score and the motion responses which normally develop during electrical kindling were reduced below their initial values.
The results suggest that THP is a very effective antiepileptogenic and anticonvulsant agent when applied to electrically kindled rats.
Shixiao San, Jin Lingzi San, Liang Fu Wan, and Baishao Gancao Tang
by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine, Portland, Oregon
excerpt:
. . . Corydalis is added "to increase the pain-relieving effects of this prescription."
To compare Shixiao San and Jin Lingzi San, it is helpful to examine two of the main ingredients. Yang Yifan (9) compares corydalis to trogopterus (wulingzhi):
Corydalis and trogopterus enter the liver and spleen meridians. Both are able to promote blood circulation and remove congealed blood. They are very effective for relieving pain.
Corydalis, inflammation - 3 abstracts (one lead to Curcumin)
Hypomagnesemia, pain - 32 abstracts
=======================
This is an excellent formula, intended for use before going to bed (follow instructions and caution with driving until you get used to it. Do not mix with sedative or alcohol).
Ingredients; Corydalis root, jujube seeds and Schisandra fruit.
Jujube is also called zizyphus. Schisandra is also spelled schizandra. Both can be searched at PubMed and at The One Earth Herbal Sourcebook ( http://oneearthherbs.squarespace.com )
Topic: CURCUMIN Prevents Some Stress-Related Changes (Endocrine & Neuro)
=================
In my experience, Corydalis makes me sleepy. Curcumin does not. -
Posted by Keebler (Member # 12673) on :
- You may already know all that is in this first article but I'm not sure so I'll leave it.
Other links may provide some guidance if your cousin is so sensitive to the IV meds. Just my opinion, I suggest Buhner's book may be the best for her at this point . . . while you figure it all out. The andrographis suggested in his book has helped me by reducing seizures triggered by even slight sounds (not even noise).
More later. Best of luck. Oh - this is the one suggested and the one I use. In addition to magnesium and fish oil and maybe curcumin or turmeric - andrographis is the strongest helper so start slow and low:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
You didn't say -- has she been tested or diagnosed with any of the coinfections -- it is very unusual to only have one tick-borne infection.
Some patients may do better by treating babesia or bartonella first before treating lyme. It all depends on which infection is assumed to be causing the worst symptoms.
I agree with Keebler that the Buhner protocol might be a starting point. Herbs may have less side-effects than antibiotics and might stabilize her so she could tolerate more aggressive treatment in the future.
Optimally I would probably look for a Chinese medicine doc if funds are limited. They can usually at least pinpoint which areas of the body are the most stresssed without spending a fortune in lab tests.
Liver and adrenal support and possibly IV vitamins or amino acids might all be beneficial.
What does IPC stand for? Not familiar with that abbreviation.
A very low dose of Lyrica (a seizure med which also works for fibromyalgia pain) or very low dose of the blood pressure med Benicar (helps with brain inflammation) are other possibilities.
She is lucky to have you looking out for her.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Please make sure of the acronym... IPC.. is that correct? If so, what does it stand for? I know there is a treatment which is rather dangerous with similar letters.
and Yes, what coinfections has she been treated for?
Thank you for being such a great cousin!!
Posted by glm1111 (Member # 16556) on :
Hi, Sorry she is going through such hell. I have/had severe neuroborrelia and was on antibiotics for 4 yrs including 6 mos of IV rocephin.
It wasn't until I was aware that Lyme disease had a MAJOR parasite/worm component was I able to turn the corner. I found this website here on lymenet.
and started taking antiparasitic herbs and salt/c was I able to start healing.
Everything pictured on the lymephotos site is what came pouring out of me. Most LLMDs are not aware of this parasitic component. Please read the website and see what you think.
As Keebler suggested, herbs might be a good start. Starting with low dose salt/c may help also because salt puts the parasites into osmotic shock.
I hope she can find relief for this terrible disease,
Gael
Posted by leonimous (Member # 24402) on :
Thanks to all of you for your kindness, generosity and clear-sightedness. I see I have my homework cut out for me. I will speak to my aunt, today, to learn more about the co-infections.
Posted by leonimous (Member # 24402) on :
I wrote "IPC," above. It is actually "IPT." This is just the latest therapy we are considering:
IPT is insulin potentiation therapy, a non-diabetic use of the hormone insulin to dramatically improve effectiveness and delivery of standard medications. IPT has an outstanding 135 doctor-year track record (115 years for cancer) over 72 years, and is ready for clinical trials and widespread use.
Posted by ping (Member # 6974) on :
quote:Originally posted by leonimous: IPT is insulin potentiation therapy,
Oh No! My God, don't do that! It's been tried by some posters that were here on this site more than 5 years back and was a disaster! Didn't help anyone and most became very ill for some time. Please don't!
[ 02-10-2010, 03:33 PM: Message edited by: ping ]
Posted by leonimous (Member # 24402) on :
Ping,
Thanks for the warning! We'll skip that one.
I've ordered the Dr. S book, printed out the Burrascano nutritional supplement protocol and passed on the info about the corydalis formula. We'll see where that takes us.
[ 02-10-2010, 02:30 PM: Message edited by: sixgoofykids ]
Posted by ping (Member # 6974) on :
leonimous - As a previous poster mentioned, the co-infections are very, very significant. I am in remission from TBD's for almost 3 years and was in treatment over 5 years. Although I tested negative for Babs and others, my LLMD at the time had the integrity and open mind to go ahead and let me do rounds of Mepron, which helped immensely!
Please make sure as many tests as possible for as many co-infects as you can think of are run. So very important...
Best to you and your family. Keep in touch
Posted by Keebler (Member # 12673) on :
- about IPT - insulin potentiation therapy
To echo ping: " Oh No! My God, don't do that! "
Indeed, while a few might have benefited (I spoke with one who did), many found it to be a very serious disaster. It's never good to mess with those kind of doses of insulin, let alone putting the body under the shock and stress of extreme heat at the same time.
It's the kind of thing that sounds good on paper if talking about a robot - but it's not kind to an actual human body.
-
Posted by ping (Member # 6974) on :
leonimous - When researching therapies, please reject anything that combines insulin & heat, as Keebler says. Also, if you see anything with the letters DNP , then, RUN FOR THE HILLS! It's illegal and very dangerous. Posted by Keebler (Member # 12673) on :
- COLLOIDAL SILVER
Hey, I totally forgot about this one until Lisa just sent me PM with a question. So, thanks, Lisa.
Colloidal Silver may be a very good thing in this case. Years ago I was nearly in a wheelchair and this not only stopped that from happening but got me walking again.
I had talked by phone with the researcher who discovered the lyme spirochete (the kind of bacteria it is) and he was strongly in favor of silver's effect against lyme.
It saved my life at that time.
To save time and my hands, I'll just copy my reply about this:
Yes, Source Naturals it an excellent brand. I don't know about ---- - I'm sure there are many good ones out there.
If you feel good taking it, that is a clue. Water source is very important and while it's really cheap to make and most sell it for obscene profits, I'd feel safer with a very good brand.
I had trouble with Mild Silver Protein - WAY too chemical tasting for me an I had more seizures with it.
Thanks for the reminder about the silver. I forget. I just don't know how it gets back OUT of the body, so I'm a bit apprehensive for long term use. But it kept me out of wheelchair early on when I had not other choices.
Good luck. -
Posted by psano2 (Member # 11711) on :
Try virgin coconut oil, cold pressed. A good brand is Nutiva. It's very effective against supposedly fungi, bacteria, and protozoa (would include Babesia) and it's natural. Start w/ a very small dose, maybe 1/4 teaspoonful and see how she tolerates it. Then increase the dose as tolerated to 1 TBSP 3x/day. It will probably take her a long time to get to that point. Lyme isn't a quick fix, and the herxes are terrible. But as you keep treating, the herxes will gradually get more tolerable, then smaller and smaller.
Posted by Haley (Member # 22008) on :
It sounds like your cousin is having a tough time. I echo - check for co-infections and see if they have been treated.
Also, I believe it's Lyme not Lyme's.
What do her LLMDs say about all this?
Posted by Pinelady (Member # 18524) on :
I agree with the Keebler. Colloidal Silver slowed mine down. It has been proven to make the keets
immobile in several studies. But I don't think it kills like we would like. I would like to see a CS
and chloroquine study done. Together I think it could help. Along with a low dose of doxy. The
I would like to add I believe this study is flawed by the fact they used silver stain to say the are not infective when immobile. Just my take.
Annu Rev Genet, 2002, 36, 47 - 73 Epub 2002 Jun 11. Genetics of motility and chemotaxis of a fascinating group of bacteria: the spirochetes; Charon NW et al.; Spirochetes are a medically
important and ecologically significant group of motile bacteria with a distinct morphology . Outermost is a membrane sheath, and within this
sheath is the protoplasmic cell cylinder and subterminally attached periplasmic flagella . Here we address specific and unique aspects of
their motility and chemotaxis . For spirochetes, translational motility requires asymmetrical rotation of the two internally located flagellar
bundles . Consequently, they have swimming modalities that are more complex than the well-studied paradigms . In addition, coordinated
flagellar rotation likely involves an efficient and novel signaling mechanism . This signal would be transmitted over the length of the cell, which
in some cases is over 100-fold greater than the cell diameter . Finally, many spirochetes, including Treponema, Borrelia, and Leptospira,
are highly invasive pathogens . Motility is likely to play a major role in the disease process . This review summarizes the progress in
the genetics of motility and chemotaxis of spirochetes, and points to new directions for future experimentation.
Biochem Soc Trans, 2002 Aug, 30(4), 768 - 70 Manganese transport and its regulation in bacteria; Bhattacharyya-Pakrasi M et al.;
Regulation of manganese acquisition by bacteria occurs by both biochemical regulation of the activity of the transporters and transcriptional
regulation of gene expression . Structural analysis suggests that calcium ions may regulate the function of an Mn ATP-binding cassette
(ABC)-permease in Synechocystis 6803, a cyanobacterium, as well as in a number of other bacteria . The expression of genes encoding the manganese transporter in Synechocystis 6803 is
regulated by a two-component signal-transduction mechanism that has not been previously observed for manganese and zinc transport in bacteria.
I remember a lady who was wheelchair bound and her last hope was colloidal gold. They were able to give her a couple of years with it. She had severe crippling Arthritis.
[ 02-11-2010, 02:05 AM: Message edited by: Pinelady ]
Posted by leonimous (Member # 24402) on :
Colloidal silver and virgin coconut oil in very low doses. Neither is terribly expensive. I'll find out if she has tried either. I haven't heard back from my aunt, yet, about the co-infections. I do know she has undergone scores of tests. I know silver is great on burns and scrapes and even sore throats. I've heard that, internally, it sometimes falls short of expectation. But it is a gentle substance. Given experiences reported above it is certainly worth doing.
Thanks again.
Posted by leonimous (Member # 24402) on :
It occurs to me that with all the political strife / craziness associated with Lyme (no "'s" this time), I probably should not have mentioned names in my last post.
Is there any way to remove that last note from the thread?
Posted by Keebler (Member # 12673) on :
- Yes. You can clink onto the little icon of the paper and pencil just to the right of center above your post. That takes you to the EDIT page and you can change what you like.
If you want to delete an entire post, you can click onto the delete box to the left while in the edit mode. Then click as normal for the "add reply" and magic should happen. Poof !
BTW, there are a couple excellent ILADS-member LLMDs in California. -
Posted by leonimous (Member # 24402) on :
Keebler,
Worked like a charm. That post is gone, gone.
Leonimous
Posted by sickpuppy (Member # 23846) on :
I'm trying to cope with many of the same issues as your cousin. I've been having a hard time tolerating meds so someone suggested I try NAET acupressure. I've only been 3 times and I'll be treating my new abx protocol this coming tuesday. This is the website, if you're interested--check find a practioner.
Luckily mine is also a nutritionist who knows cranial sacral therapy. If your cousin ends up going, tell the practioner to do manual acupressure--no electric vibrations.
How is your cousin's diet? That might be something to explore as is cranial sacral therapy for temporary relief. Maybe you could find someone who would come to the home.
Also I do some breathing exercises that calm my nervous system and help when I can't breath:
You're supposed to do 20 mins/day, 2x day. Breath in on the higher pitched gong, breath out on the lower/downbeat gong. Breath from the belly not the chest.
Of course I rarely think to do it when I'm having a MAJOR problem.
I know 2 women with lyme who swear by ozone therapy=direct IV ozone. Don't know too much about it.
The Singleton book is GREAT!!!! You'll see LOTS of ideas in there. He talks about low dose naltrexone which might be something to look into: www.lowdosenaltrexone.org
You're a wonderful cousin. We should all be so lucky. ALL THE BEST. I hope something works soon.
[ 02-12-2010, 10:36 AM: Message edited by: sickpuppy ]
Posted by leonimous (Member # 24402) on :
I have learned some more about my cousin's situation. She has not had an official diagnosis of co-infections, since, apparently, present day testing is very inexact / primitive (false positives and false negatives abound), but strongly suspects that a number are present. Should she just choose one, randomly, or that her symptoms match most closely and follow a suitable line of attack?
The really troubling aspect of her situation is that her extreme sensitivity locks her out of virtually any / all treatment approaches. To illustrate, here is an excerpt from her February log:
My neurological symptoms seem to become worse and be more interactive than ever now. A set-back in one, caused by even the least overstimulation, adversely affects the group of symptoms. Among these related symptoms are panic; ever-worsening hyperaesthesia (of sound, talking, light, motion, smell, touch, even the mere presence of someone else in the room); many kinds of headache, including on the left side (astigmatism); thoracic outlet syndrome; and tension in the jaws, cranial spine and collarbone area. Constellation of tension in jaw, collar bone, up over the head, down body, and thoracic outlet syndrome; hours to recover.
I have extreme reactivity to almost all supplements, medications, herbs and homeopathics, often in the form of spinal twisting and feelings of my head fragmenting (goes along with panic and hyperaesethesia and general contractions of the whole body). Very, very difficult to get any treatment or relief.
All these symptoms lead at times to a sense of hysteria and a variety of other psychiatric symptoms: crying, intermittent depression, fear of losing impulse control and throwing things, hurting myself, fear of going crazy; feeling angry and mean; something resembling fragmentation of the self when overstimulated; obsessive; trouble concentrating; occasional paranoid thinking; feeling regressed, needing comfort and overwhelmed.
What do her LLMD's advise, at this point? Mostly they are having her try anything that is, first and foremost "gentle" but that does her some good.
Posted by leonimous (Member # 24402) on :
I thought the silver would be a good choice. My aunt reports that even that caused great pain / distress. She has not tried the coconut oil / magnesium (another suggestion from above). What about charcoal? I did search through this forum for mention of AC. If it can really "sponge up" the toxins that would be great. I would think charcoal would qualify as "gentle."
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