Max's Lyme Disease Nightmare Thread
 

I was bitten by a Lyme infected tick on May 8th. I posted a bit about it on the Duck's tick thread. I am going to start a new thread. I want people to be aware of all this, and not make the simple mistakes I made which may well have lead to my getting this.

There is a lot to this. Poor medical protocols, ineffective tests, ignorant doctors, politics and much else. Quite shocking. I feel like I have woken up in a Kafka novel I will have to post in bites, no pun intended, as I am not feeling at all well, surprise, surprise.

WHAT TO DO AND NOT DO

1) DO NOT put vaseline, soap, etc, etc on the tick
DO NOT burn the tick with a match or a cigarette

Either of these techniques will cause the tick to regurgitate into you. I put vaseline on mine.

I am going to put up a link with 2 suggested removal methods. The tweezer used carefully near the head (no squeezing body) is good too.

NOTE: It is widely believed that a tick can be on you for 24 hours prior to giving you Lyme, if it is infected. Not true, that is in a lab. In reality you might lie on the tick or otherwise squeeze the tick.

ALSO: Ticks carry at least 3 other very nasty diseases as well as Lyme. All of them hard to detect.

2) SAVE THE TICK

I flushed mine down the toilet. Put the tick/ticks in a medicine bottle with a few blades of wet grass. If you live in a known Lyme area they should be sent for analysis. If you develop Lyme symptoms after a bite having the proof of the tick could be very valuable.

3) TARGET/BULLSEYE RASH

I am going to post a link which will show photos of this rash. It can be as small as a dime or as big as a dinner plate, or larger.
This normal occurs 3- 10 days after the bite.
It is also possible to be infected with Lyme and not show this rash.
This rash can also occur later, anywhere on the body, not necessarily on the site of the bite, in someone who has Lyme.

IF YOU GET A RASH LIKE THIS IT IS A CLINICAL INDICATION OF LYME. THIS IS NOT AN ALLERGIC REACTION TO TICK SALIVA.

Photograph the rash. The politics involved in this illness are incredible, also the tests are inaccurate, especially in Canada. Proof and evidence are essential.

If you get any other sort of rash anywhere on the body, after a tick bite, also seek medical treatment and photograph it.

4) AT FIRST SIGN OF RASH SEE A DOCTOR

Depending on where you live your chances of getting a doctor who knows how to treat this vary wildly. You MUST get antibiotics. Do not mess about with natural/alternative treatments in this case. Lyme has a similar structure to Syphilis. It tries to get out of your blood stream, to evade your immune response, which it will surpress and into your tissues. This includes brain, heart, kidneys, etc.

See the links. The best antibiotic is Doxycycline.

Depending on where you live, who you see, you may be offered 1 - 3 weeks antibiotics. (This is inadequate, but take it, it is a start.) The life cycle of the Lyme bacteria is 4 weeks. 4 weeks is absolute minimum.

If a doctor says he will not start you on antibiotics until after the test, leave and get another doctor.

5) Contact the Lyme Foundation at the link below and find a support person in your area (list for Canada/US and other countries) and seek a 'Lime Literate MD' in your area. Be prepared that this person might be many miles from you, or in a different state/province.

I will go into the scandalous politics surrounding all this later.

http://www.canlyme.com/support.html

http://drerniemurakami.com/

Re: Max's Lyme Disease Nightmare Thread
 

Maxine,

Thank you for sharing your experience. This is a concern in my area and would like to know best what to do should we be confronted with this.

Good luck!

Dave

Re: Max's Lyme Disease Nightmare Thread
 

Dave I would suggest you go on the CanLyme link, click US and find a rep in your area and contact that person for details.

I live near a town which was recently made a 'World Heritage Site' for tourism. I also discover that this place, Lunenburg, Nova Scotia, has a 27% rate of Lyme infected ticks in a rural area just on the outskirts.

If I had had any idea I had a one in 4 chance of getting Lyme from that tick I had I would have been an awful lot more careful about how I removed it. It was hard to reach, middle of my back, and I yanked and pulled at it, when the vaseline did not work. I know I squeezed it.

What is happening here is that a lot of dogs are being tested by vets and turning up Lyme positive. A lot of people are NOT.

The reason for this is that Canada uses a very poor test called an Elisa. All of Canada. Not only is this a poor test, but I also learn that the Nova Scotia lab does not process it properly.

I have been given a blood requisition for the test, when I went to the clinic and presented the rash. (The doctor looked scared. They DO NOT want to be involved in all this.) I have been advised by my area rep at that link not to take this test. He says if I do and it is negative, as it 98% chance will be, it will prejudice me against further treatment in Canada.

I have also been told that if I demand to see an Infectious Disease specialist in Halifax they will make sure this 'all goes away' but in the political, not the medical sense.

There is ONE doctor, in my province, a family GP, willing to treat this properly and seriously. He is 200 miles from me. He could also get into a lot of trouble for violating Health Canada specs on treatment, which are inadequate, and based on an inadequate US protocol. Many doctors in this province, and elsewhere, refuse to treat Lyme. REFUSE. They do not want to be caught up in the controversy. Which is being generated by insurance companies, test manufactures and tourist boards.

It is incredible. If if I was a dog I could get proper treatment, right down the road.

Re: Max's Lyme Disease Nightmare Thread
 

You have my sympathies and prayers, Maxine.
My grandmother has dealt with this for years. it comes and goes, but it's sure a pain.

Re: Max's Lyme Disease Nightmare Thread
 

Ain't Medicare wonderful. Thanks for the info, Max. I think I'll call the local CLSC and see what our local protocol is WRT to it.

Re: Max's Lyme Disease Nightmare Thread
 

You are in Quebec. I can tell you. The protocol is the same across Canada. 1-3 weeks Doxycycline and an Elisa test though your lab there might be a bit more competent than ours here. Maybe? This is not adequate.

Re: Max's Lyme Disease Nightmare Thread
 

Thanks Iptuous. Sorry about your gran.

Re: Max's Lyme Disease Nightmare Thread
 

Thank you for taking the time to post this. I have lost one Brittany Spaniel to complications from Lyme and I have watched my dad struggle with it for 12 years now. He contratced it before I'd even herad of it.

As if the disease isn't enough, it can also complicate other medical issues one may have.

Re: Max's Lyme Disease Nightmare Thread
 

Oh, Maxine, sorry to hear of your Lyme troubles. I always worry about it as I spend so much time outside and in the woods.

Not sure if you are interested, but I ran across the following last night while doing my herbal studies:

http://www.herbalremediesinfo.com/poke.html


Hope you feel well soon!

Re: Max's Lyme Disease Nightmare Thread
 

Re: Max's Lyme Disease Nightmare Thread
 

I live in the middle of the dark area on the East coast. I wish the map showed Canada. I have ticks on me or my dogs on a daily basis (One already today). I have friends with the disease. Be careful out there.

Re: Max's Lyme Disease Nightmare Thread
 

[QUOTE=MagpieFairy;1730500]Oh, Maxine, sorry to hear of your Lyme troubles. I always worry about it as I spend so much time outside and in the woods.

Not sure if you are interested, but I ran across the following last night while doing my herbal studies:

http://www.herbalremediesinfo.com/poke.html

Hi Magpie Fairy,

Thanks for the link. I am hearing Golden Seal too. I did see a link with a guy who was a herbalist who said he had luck with that. I am going to try and find it again and email him.

I would like to try and find a TSHTF means of dealing with this to post. Even if TS does not HTF many people may have trouble getting an adequate supply of antibiotics.

That person says he/she had a funny reaction and lowered the dose. It might have been a side effect, or it might have meant it was working. Apparently a 'Herx' reaction, feeling worse as the remedy kills off the bacteria is common with Lyme, to be expected. So it makes it hard to know if you are a) getting worse b) having a side effect to the drug or c) Having the 'Herx' reaction, which is good.

There is a lot of detailed info on the two links I put up, also a good forum on all this at the CanLyme link. In English and French, the forum.

This is what I am taking now, and have ascertained I am OK to take, alongside the antibiotic:

1) High Dose Echinacea (for 10 days - gets ineffective after that)
1200 mg (tablets) 2 per day
(Using A Vogel Echinaforce Forte)

2) 600 mg twice a day garlic capsuals

The Lyme will try to suppress your immune response, thus the Echinacea.

The garlic is a natural antibiotic.

VITAMINS ETC

1) Was told to take 300-400 mg Coenzyme Q10 per day until this resolves to protect the heart as much as possible. Cardiac damage is very likely with Lyme. The longer it goes on the more certain this will occur.

2) Vit C time release 1000 mg
Some studies suggest use tons of Vit C, others say it can make it worse. I was taking this anyway and am sticking to this dose.

3) Omega 3-6-9 one 1200 mg cap per day
For some reason it is good to have plant based fatty acids as well as fish ones.

4) Omega 3 2X 1000mg per day, minimum. Take more when I remember

5)D3 1000 mg. Again some say more?

6) B Complex 50 mg (I would say 100 mg for a large man.)

They also suggest one good multi vit per day.

DRINK LOTS OF WATER - ALSO HELPS.

Also eat yogurt and take a good quality Probiotic.

____________

This is the DO NOT list, and considering how hard it is to drag antibiotics out of the system, and how hard this bacteria is to eradicate, I think it is worth following.

NO ALCOHOL (Gasp!)
Yeasts and sugars are supposed to feed it.

Stop or cut down radically yeast and sugars in foods.

No, or reduce smoking, you need to keep your blood well oxygenated.

Cut right down on caffeine.

_______________

Time the pills carefully.

With Doxycyline

No milk/dairy min 2 hours before or after.
No antacids ditto
No vit supplements ditto
Do not take slow release iron supplements.

All I seem to do since I got this is take bloody expensive pills while getting more and more weird symptoms, and they are weird too.

Re: Max's Lyme Disease Nightmare Thread
 

Thanks for this thread, I've read info and accounts about Lyme and it's a serious threat, I hope you have a quick recovery.
I went thru some of my home/natural remedy treatment info and found nothing.
Presently if I find an attached tick I carefuly remove it and save it in pill bottle for future reference. Then I clean the bite and apply a charcoal poultice.
What concerns me is..what if there are no med tests or doc perscriptions available in a not so distant future SHTF scenario.
Hmmm... hope that poultice works...probably not since "the Lyme" is already in your blood stream.
The devil is in such small small details...
Once again I hope you have a quick recovery and good luck.

Re: Max's Lyme Disease Nightmare Thread
 

Hey Maxine, my post bounced in right after your last one, thanks for the additional alternatve treatment info.

Re: Max's Lyme Disease Nightmare Thread
 

I just found an imbedded deer tick a few days ago, I took doxycycline for a few days.
I have doxycycline on hand, Bird biotic, available on the web. Not medical advice.

I've self treated several times and have never had Lyme, while vitually everyone who spends as much time in the wood as I do has had it - some have chronic cases. Don't fool around with this one. Many doctors are clueless, one guy I know was told he needed to see a psychiatrist until he spent his own money for the expensive test.
My brother was told that "ticks aren't in season" after finding an embedded deer tick (I never knew that doctors were also entymologists).

This is a life changing disease for many who miss it initially.

Re: Max's Lyme Disease Nightmare Thread
 

Thanks for the antibiotic info. Is this a standard drug for birds? What type of birds do you keep?

The man I spoke to yesterday from the CanLyme advice line told me that his wife was bitten in 1999, in Nova Scotia, when this 'did not exist' here. Tick and rash were seen. She was very very ill before they accidentally realized what she had.

He told me he had to carry his wife, she could not walk, was in a wheelchair, into an appointment with an infectious disease specialist in Halifax. He refused to test for, or entertain Lyme, he tested her for a bunch of other stuff. Someone, whether it was this specialist or another, a neurologist or someone, told this woman, who could not walk, that she had 'depression'. Her husband told me she could not walk, and was so confused she could not remember what she had for breakfast. Depression, ye gods!

They had to go to the US for treatment. She is a lot better now, but her heart was permanently damaged.

The stories I am reading on the forum over on CanLyme make your jaw drop.

Re: Max's Lyme Disease Nightmare Thread
 

I think the charcoal poultice is a VERY good idea, and anyone with a tick bite should follow this. It would depend on timing, but it might well help. I attempted to buy activated charcoal at two pharmacies yesterday and could not. I still have a very infected site.

I was reading VERY positive things about charcoal. I think on that CanLyme forum. There is a lot of info on there. It seems to be the GIM of Lyme sites. Far better than others I glanced at. There is some whacko stuff on some other sites. Including people putting Spot On and Front Line (dog tick deterrents) on themselves.

Re: Max's Lyme Disease Nightmare Thread
 

Thanks for posting this, Maxine....I wasn't aware of that you could still get Lyme's even if the tick wasn't embedded on you for 24 hours....I went shooting out in the woods a few weeks ago and came back covered with deer ticks.....as soon as I got home, I stripped down and did a full body search....scary thing was a couple of the ticks were already starting to dig in on me, but I got them all off.....

Check yourself anytime you are in woods or brush....the deer tick population here in New England has exploded recently, no idea why...

anyway, hope you recover soon..

Re: Max's Lyme Disease Nightmare Thread
 

I am really sorry about your dad and your dog, Camp Bassfish.

I am now very concerned about my cats. I know there is a Lyme vaccine for dogs. How safe, how good? There is not one for humans, cats I have no idea, I don't know if I would want them to have it anyway.

This tick was carried into the house by one of my cats. I am certain of it. I think it was in my bed, they often sleep on it, and near the top of it, as it got stuck to the middle of my back. My quilt is a dark colour and I would not have seen it. I maybe flipped it into the bed getting in.

I have put 'Revolution' on all the cats. The trouble is this does not stop the tick biting. It will kill it, but not stop the bite occurring. Also though it works for a month or more on fleas, it is supposed to be only for 2 weeks re ticks. I can't keep doping them up on Revolution every five minutes, it will do their livers in.

Ticks have more trouble attaching to cats than dogs, cats seem to feel them more readily than dogs. But this means the chance of a tick being flipped off a cat in the house is greater than with a dog. Especially a long hair. I have one cat, black, with long hair. I would not see a tick in a month of Sundays on him. He is likely the one it came in on. He is like a walking mop.

____________

I meant to say this. Yes it does complicate other medical issues. And, to my horror, since I have thyroid/adrenal problems already, the endocrine system is the first point of attack for the Lyme bacteria, in order to suppress your immune response. I was having enough trouble as it was getting that under control, and getting sensible medical treatment, between in the 'one size fits all' Big Pharma run system, and the doctor shortage here.

I begin to wonder what the origin of this hypothyroidism I so suddenly developed since I moved here is. It could be I would have got it anywhere. But I have been bitten by ticks before here. Though no rash. But you do not necessarily show the rash.

Re: Max's Lyme Disease Nightmare Thread
 

Morgan, the good news is that some of the East Coast states have the most competent doctors re all this. Also in some states (3) legislation had been passed to protect doctors treating Lyme from persecution.

I need to look about and get more links about this. This is going into the politics/controversy field, with all this.

Your link contains misleading advice. Though that is no reflection on you, up until a week ago I would not have known that myself.

I have seen the Mayo clinic being slammed re Lyme on the CanLyme forum. 'Ace of the base' as they may be at most things, not so at Lyme, apparently. People have spent a lot of money, often with no insurance, if they are from Canada, going there and have not done well.

There are two treatment protocols, and a raging controversy in the medical world over them. I do want to find links and post about it, and look into it more myself.

People are posting faster than I can answer on this, and as usual for GIM, it is all very good stuff. I am getting very tired for the moment. This link you have posted is actual key.

This is the kind of thing that is being put about about this. That it is something and nothing, and easily dealt with with a couple of weeks antibiotics. It probably could be dealt with in many new cases, IF a longer course of antibiotics and better testing was in place.

THIS is the sort of thing, up here in Canada: I learnt that if a biopsy is taken of the target shape rash it will come back very conclusively saying you have Lyme.

I have a beauty of a rash, still do, yet this test is not given. I would have to pay for it myself and order a test kit from an independent lab in the USA. I am looking into that. In any event this test is NOT accepted in Nova Scotia. A biopsy. But a next to useless blood test IS. READ: they do not want a lot of proof running around that people from the World Heritage Site, Lunenburg, have caught Lyme Disease off the local ticks. It is OK if dogs have it though.

Re: Max's Lyme Disease Nightmare Thread
 

I got a Lyme rash in 95. Fell terribly ill and went to an ignorant doctor. He gave me 4 days of tetracycline and when the blood test came back it was negative. Turns out those test are worthless. I didn't know this until 2 years ago. I don't know what to do but I am not well and haven't been for years. Do I have Lyme? Well the rash is a give away or so I'm told. It was a classic bullseye.

I don't know where to go for an accurate test. Is there an accurate test and if there is, what to do then?

I get tired easy. Have arrythmia/atrial fibrillation and joint pain. Funny thing is, I'm in better shape than most people my age, 51.

Re: Max's Lyme Disease Nightmare Thread
 

Yes you DO have it.

I was told, very definitely, yesterday, that if you have had the bull's eye rash it is LYME.

Go on the CanLyme site on my first post, there are links you can click to get help in USA and other countries. Get on to the local representative.

The heart problems and joint pain is typical, and progressive, I learn.

The tests are no good, as often administered. They usually do them too soon. If you are in certain areas of the Eastern US you can probably get competent help fairly easily. Elsewhere it may involve travel.

Contact that site. Good luck, let us know how you get on.

Long term antibiotic therapy, even now, will eventually check it, but it does mean long term, since caught so late. Talk to the reps, and get the name of a good doctor in your area.

Re: Max's Lyme Disease Nightmare Thread
 

I have LOTS of ticks at my place and thankfully every time I've found them on me they haven't dug in yet.

This year I vowed to take the fight to them with Permethrin.

The idea is this, when the ticks are in the early stages of life they host on mice only. Then when the tick is in later stages of life they move to dogs / cats / deer / people. If you can kill the ticks when they are in the early (mice) stage you keep them from getting to the age where they attach to larger hosts.

I built some "mice scrubbers" with a piece of 2" PCV pipe cut into 12" lengths.
Stuff a couple of old socks into the pipes. Cotton balls can also be used which the mice will take to build nests.
Mix the Permethrin as directed into a yard sprayer.
Carry the scrubbers to the brush / woods
soak with sock with Permethrin from the sprayer and toss into the woods / brush
repeat every 10 yards.

The mice loving tight places will crawl into the scrubbers and come in contact with the Permethrin. This doesn't harm the mice but kills ticks on contact and treats the mice up to 4 months.

Permethrin is the active ingredient in most dog flea and tick treatments.

Permethrin can be purchased at a farm supply store for a fraction of what you'll pay at a pet store.

Warning: Permethrin is toxic to cats.

Re: Max's Lyme Disease Nightmare Thread
 

It figures MSNBC would give out lame info... I would have posted the story it was part of but it is too sad. I was just out doing some photography, 3 ticks. Kind of just part of life around here.

Re: Max's Lyme Disease Nightmare Thread
 

MMS cures all ailments!

Re: Max's Lyme Disease Nightmare Thread
 

I keep gold and silver eagles:565:

Seriously, I order bird biotics because then I don' have to go to the doctor's, I haven't been in 15 years. Keep the antibiotics in the refrigerator and order fresh every few years. I have used the antibiotics maybe 4 or 5 times in the past, like I said this is not one disease to leave in the hands of a possibly incompetent doctor.

Re: Max's Lyme Disease Nightmare Thread
 

Well, better to keep them that Budgies!

But like is this a drug for hens, pigeons, budgies?

Not medical advice either, but I am on 100 mg Doxycyline twice a day.

I am about 5 ft 8, female, medium weight, for age, 40's, I am not sure what, I do not weigh, say around 140 lbs. I very much doubt this dose is enough. If I was a 6 ft 2 bloke who weighed 210 lbs, I am damn sure it is not. The doctor looked in a book when I went to the clinic.

I continue to get funny symptoms. I have a secondary rash on my legs as of yesterday. Symptoms change by the day. Though any joint I have had an injury in, ever, is by now aching. Started with the most recent one first. I am now starting to ache in joints I have never been injured in.

AN IMPORTANT ONE IS THIS:

Take your temp, morning and mid afternoon. Record. Lyme Patients generally have a low slightly low temp in the morning, and a slight fever at mid afternoon.

Also record all symptoms in a diary.

Re: Max's Lyme Disease Nightmare Thread
 

People, ie Lyme patients, apparently want this done for deer here in Nova Scotia, with 'bait traps'. The deer has to put its head into a similar device to get a food reward. It leaves it with the deer version of 'Spot On' on it's neck. I guess this is being done in some of the Eastern seaboard US States already.

Sounds a good plan.

Thanks for saying re cats.

Re: Max's Lyme Disease Nightmare Thread
 

Maxine, read this page:
according to the author your doxy dose may be to low? (300mg to 600mg)
http://info.lymebook.com/matthewgoss.html


there are many other natural products that you can use to help fight this,
none of them may be a "silver bullet" but used together they will help suppress lyme

Cats claw (Samento) is one herb that many people are claiming has helped
http://www.bionatus.com/nutramedix/p...mento_what.htm
you can get it on Ebay in the raw form and add it to your herbal tea mix.
http://cgi.ebay.com/Cats-Claw-Bark-C...lenotsupported
more herbal remedies for you to explore here:
http://www.1stchineseherbs.com/lyme_disease.html
http://www.lymeinfo.net/alt.html

Re: Max's Lyme Disease Nightmare Thread
 

Re: Max's Lyme Disease Nightmare Thread
 

While camping last month, a friend suddenly grabs me, "Something is bitting the back of my neck!" and sure enough, square in the middle of his neck, there is a tick who had just started biting him, butt to the sky.

I put pressure on it like a pimple, and the tick slid out body, head, and all. I applied a clove essential oil directly to the area he was bitten in and I threw the tick in the fire (We were camping, after all)

Nothing worse came of it but he was very freaked out for the rest of the night. From what I can tell the tick was biting him for less than a minute which is why he was so "surprised" and let go easily when I went to pull him out; he wasn't entrenched yet.

Not having showers available, he admitted to smelling occassional wafts of cloves for the rest of the trip.

Re: Max's Lyme Disease Nightmare Thread
 

Any studies of colloidal silver use curing Lyme?

Re: Max's Lyme Disease Nightmare Thread
 

Maxine,
This web site sells a tincture for lymes

http://www.nutrimedical.com/products.jhtml?method=list
ITs the third one down..

***NutrioDine Thyroid Mitochondrial (order page)

NutrioDine Ionic Thyroid and Mitochondrial Iodine Most Bioavailable Iodine for Mitochondrial, Energy, Hormonal, Thyroid, Detoxification from Fluoride & Bromide, Kills Pathogenic Bacteria, Viruses, Lyme, Malaria Plus.
He also says this will put an immediate halt to the BirdyPig flu that is going around.

Dr. Deagle has a radio show on www.gcnlive.com . I have learned so much info from him.

I have not tried it yet, but have some on order.

Re: Max's Lyme Disease Nightmare Thread
 

I forgot, you can put a cut raw potato on a bite and it will draw out the poison. I had a friend get bit by a spider on her elbow. She cut a potato and put it on the bite, then put an ace bandage around her arm and the potato. She changed her potato twice a day. In 3 days ( I think) all the swelling was gone and she was fine.

You can find activated charcoal in the health food store. I have used it on my dog when she ate a mouse that had been poisoned by decon. She would have died if I did not give it to here. I mixed a few capsules with water and made a paste and put it in a baby liquid medicine syringe and shot it down her throat.

Re: Max's Lyme Disease Nightmare Thread
 

Great thread Maxine. Thank you. Thoughts, meditations and prayers for your timely and complete recovery.

Re: Max's Lyme Disease Nightmare Thread
 

I have had my newest Brittany vacinated, but not our little Pom. The Brittany's are so high strung and love to run. It would only be a matter of when and not if they were infected. No negative effects to date.

Re: Max's Lyme Disease Nightmare Thread
 

Thanks everyone for good wishes/prayers and tips.

Zilver - I think you could be right about the dose being low. Hard to say. I have read some doctors think low is better, others not. I'll have to wait and see what the doctor a handy 200 miles away says when I see him.

Cat's claw is supposed to be good. I had something or other that made it unsuitable for me to take. High blood pressure I think.

917601 - Yes, re the collodial silver, there is some evidence it does work.

ImaCanin thanks for links and info. I will get some of that charcoal.

Here are some further links going into the controversy between the IDSA (Infectious Disease Society of America) treatment guidelines versus the ILADS (International Lyme and Associated Diseases Society) ones. The IDSA ones are the ones in place all over Canada, and in most of the USA. There is growing evidence they are a flawed protocol. The IDSA protocol was the one used in the link Morgan the Goat posted.

This first one is a Lyme MD's blog. The whole blog makes very good reading.

http://lymemd.blogspot.com/2009/02/l...by-sevens.html

This guy, in the USA, is currently being investigated for malpractice for treating Lyme patients by ILADS standards, not IDSA ones.

From the ILADS web site on the issue of physicians' right to choose method of treatment.

http://www.ilads.org/news/freedom_to...pation/32.html

'Current IDSA authored treatment guidelines reflect a point of view that Lyme disease is easy to diagnose, and easy to treat and a chronic form of the disease does not exist. The guidelines recommend a 14-30 day dose of antibiotics as sufficient treatment for the majority of people with the disease. The guidelines are based on results from a small number of trials with only 350 subjects - a fraction of the 200,000 new cases estimated each year.

Physicians treating patients who were either previously misdiagnosed or continue to suffer symptoms beyond the 14-30 day treatment recommendation are left with few choices. In fact, physicians who have exercised their freedom to practice medicine and prescribe longer protocols or intravenous antibiotics have been subject to professional misconduct proceedings.

http://www.ilads.org/news/lyme_legislation/29.html

http://www.ilads.org/lyme_disease/tr...uidelines.html

Gives a summary and comparison of IDSA and ILADS methods.

Re: Max's Lyme Disease Nightmare Thread
 

Some further links.

Concerning the role of insurance companies in the USA.

'The insurance companies line up behind the IDSA, and the governing board of the IDSA has lost all credibility when the Attorney General of Connecticut revealed that 9 out 14 board members have direct financial benefit from their 'power' over Lyme Treatment Guidelines.'

http://www.lymediseaseresource.com/w...nce-companies/

A link to a petition for US residents:

http://healthcare.change.org/actions...sease_epidemic


Below is a very good article explaining the disease in detail.

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

A good site with much information:

http://www.lymediseaseresource.com/Articles.html

Regarding the use of colloidal silver in Lyme treatment:

http://www.lymediseaseresource.com/w...r-lyme-disease

And an anecdote from a forum about colloidal silver use, giving dosages used by one patient:

http://www.healthboards.com/lyme-disease/545.html

Re: Max's Lyme Disease Nightmare Thread
 

I couldn't count all the tick bites I've had over the years. Some summers I've had over 20 tick bites. Hell, I've got an itchy tick bite right now. Ticks love me, they do.

I've had that dreaded bulls eye rash from a tick bite too. It was a long time ago. There's nothing I can do about it any longer. I guess I'm a goner.

Had a dog once that dropped to the ground paralyzed because he had a few ticks sucking on him. The Vet called it Tick Bite Fever.

Ticks really annoy me. My Mom's Pastor had to quit preaching due to Lyme disease.

I wouldn't be at all surprised if it gets discovered that Lyme Disease is actually caused from too few bugs in our diet. Like scurvy coming from lack of vitamin C, Lyme comes from a lack of vitamin L found only in fly larvae or some such.
So, don't forget, Maxine, if you wanna grow up big and strong, "Eat your maggots, dear."

Ok, just goofin around... a very good thread, Maxine, and I surely hope you don't get Lyme Disease.

Re: Max's Lyme Disease Nightmare Thread
 

This is a very inadequately researched and presented post.

I learn that there is a reputed Lyme preventative herb. Locking the door, after the horse has bolted. It is Astralagus root (Astralagus membranaceus), there are other sorts, you only want this one.

To be taken in humans at 1000mg twice per day in tick season, in suspect areas. Also a good early Lyme drug. To take on first tick bite.

There is a good chance that I have spelt that like a Duck:yes:

I am becoming increasingly dyslexic, and I was anyway re the hypothyroidism. I was just getting a bit better re that, I have now got a whole lot worse again, since the bite/various symptoms. No one can call Lyme boring. You never know what you are going to wake up to.

I do have some links, but I will put them up tomorrow. Also links to two helpful books on treatment. Sorry. I clearly can't spell tonight. No.:452::yes:

The Duck will understand.:shine:

Re: Max's Lyme Disease Nightmare Thread
 

Hugs your way Maxine, and any others who encounter(ed) this nasty tick....

Hoping for a full, speedy recovery.

Re: Max's Lyme Disease Nightmare Thread
 

A further note on rashes. I have now the most impressive 'Appaloosa', my word, I used to own one, American spotted horse, red rash on my knees.

For anyone not familiar with the horse. This means the spots are raised, and very spotty indeed.

It gets much worse with heat. It is intolerable in the bath, and also not good in bed, when it warms up. Putting the Fusic Acid cream on it from the conventional GP makes it itch like crazy.

This is not a Lyme typical rash, according to officaldom. The bull's eye thing is the only thing they recognize, officially. But I got the picture at the walk in clinic, as the very worried looking local doc told me to come back if I got any other rashes. And I WOULD do, if I thought they were going to do anything for me. I am going to see the guy 200 miles away instead.

I also have a milder, so far, version of this rash on an elbow.

If you get any of this stuff - take photos and date it.

Re: Max's Lyme Disease Nightmare Thread
 

My husband had Lyme disease back in the late 80s. He didn't have insurance and was already very ill before it was diagnosed. He was lucky in that a friend who was an ER doctor at a city hospital that sees pretty much everything took it seriously and wasn't afraid to make the diagnosis. Another doctor friend of his offered him IV antibiotics free (given at her home since she was actually a pediatrician and didn't want to do it at the office), but he was embarassed about being a poor college kid and refused the antibiotics. It was extremely stupid of him. He was very sick for almost two years, with flulike symptoms, temperature, headaches, joint pain, rashes, paresthesias in his extremities. He's 6 feet tall and dropped down to less than 120 pounds. Many days he couldn't even get out of bed. It was years before all the symptoms finally abated, and he thinks they still pop up from time to time.

I hope you have a speedy recovery, Maxine! I'm truly horrified to hear about your problems with the healthcare system. (My ex-mother-in-law was a Brit, and she always used to tell me that no matter how bad the health care system and insurance problems got in the US, socialized medicine was worse.)

Re: Max's Lyme Disease Nightmare Thread
 

Maddie,

I read a site yesterday for the paediatric recommendations for Lyme in Canada. Updated this year. Chilling. I sent the link to this thread to my former best friend who has a young son. But I guess I am a GIM nutter, and various other sorts of nutter? Perhaps she is not without cause to think that, but she hardly took the time to sound me out. I hope she reads and notes over this issue.

The guidelines were the total IDSA protocol. Which is NOT adequate, in many cases, even in 'simple and obvious' cases like my own.

Scarily enough I think, Maddie, I would maybe do better with this in the UK, than in Canada. The UK and Germany have recently rejected the IDSA protocol on Lyme in favour of the ILADS. BUT their form of Lyme tick is not the same, in Europe, as ours, so seeking UK treatment in my case, would just muddy the pond.

This whole thing is insane. It is mainly about politics, and money. That is very clear to me. I am very lucky that I got a clear bull's eye rash. If lucky is the word. But luckier, by far, than many. They can't say I don't have it, as by clinical definition that rash is proof, and I live in a Lyme known area.

Your husband should have accepted the treatment, for sure.

God bless.:36_3_12:

Re: Max's Lyme Disease Nightmare Thread
 

You might want to check out http://www.lymephotos.com/

Or if your a really rich guy you could try a professional clinic like the

http://www.koyfmancenter.com/lyme.htm

or http://www.colecenter.com/index.html

Re: Max's Lyme Disease Nightmare Thread
 

Thanks, but I read there is reason to be cautious of both the overdoes of salt/VitC approach. I see reason in keeping a fair degree of both up, and some logic. But not to go insane. A good salt, a pure sea salt, that is, not any old salt. Iodized salt? Anyone who thinks they have this needs detailed, and I mean detailed, thyroid checks. Not this TSH only rubbish. Google the 'Stop the Thyroid Madness' site.

Also of the clinics that feel they can cash in on desperate Lyme, or maybe Lyme, patients, failed by the health care systems?

Well, probably one of these LLMD's, Lyme Literate MD's with the guts and the ethics to challenge the system will do you more good. If you are a millionaire, then given him/her a donation. As sooner or later, alas, he/she might end up in court, just for trying to be a good doctor.

Sad world we live in.

Re: Max's Lyme Disease Nightmare Thread
 

looks like a lot of the morgellons pics....

interesting.

Re: Max's Lyme Disease Nightmare Thread
 

It is supposed to be related. Most Morgellon's patients DO have Lyme, and even, hard to do, test positive, for it. This was mentioned on a thread today, by a member who had had Morgellon's. Oh my God, my brain!

I will link the two threads tomorrow.

The person who posted on the other thread was suggesting, more or less, that Morgellon's is a biological warfare attempt, and Lyme bacteria was the chosen carrier. Few Lyme patients get Morgellon's, but the two do seem to be related. The correlation is noted on the CanLyme forum 'Live Discussion' in my first post on this thread.

Much to post and say. Hmmm. It is apparently a 'national security' threat, here in Canada, to attempt to bother the labs for accurate statistics re Lyme. I have a link bookmarked.

Re: Max's Lyme Disease Nightmare Thread
 

Maxine -

O jeez. I am heavy duty sorry for your troubles.

Gotta have a strategy, which is gonna get me into an analysis of

Big Pharm and healthcare anywhere.

I do not mean to offend anyone with this.

OK, here goes.

My wife worked for Big Pharm for many years on the R&D end, and

I can tell you that if a product does not give you obscene profits,

Or a political advantage, or both, they won't spend the R&D $$.

It is a very unethical and corrupt industry, and runs

Hip joined to thigh with the AMA, whom I have a range

Of issues with, and the usual second-tier profiteers.

Anyway, I'll stop right there.

Big Pharm research into Lyme ranges from windowdressing

To nonexistent.

Reason? The treatment is not a profit center.

And I'm being polite here, to say the least.

Point number 2. A number of more ethical and involved

Researchers have demonstrated that the Lyme Disease vector

Is increasing at a geometric rate.

Where I think you will find the best progress is in the University/

Grassroots research programs.

The people there are generally ethical and absolutely committed.

Will you be a "guinea pig?" Yup.

But it is the straightest route from here to there that I know of.

As I had hip replacement surgery this Tuesday, I'll be housebound

For the next few weeks, and will see if I can find anything of interest.


scyth

Re: Max's Lyme Disease Nightmare Thread
 

Good luck. Scyth. And where is TA to pray for us? I am going to file a complaint!:36_3_12: He prays fast enough for pets! Actually I'll boost the prayers for those who are ill thread. GIM has a good prayer team. As lab cats have proven!

I hear that the long term antibiotic treatment of this Lyme is not so profitable to the drug companies. But the often mistaken long term diagnoses as MS and, and, and are VERY, profitable to them. AND more. I am reading it all. By degrees, between fevers and rashes. VERY INTERESTING.

God bless.

Maxine

PS What we have here is a political disease. All too clear.

Re: Max's Lyme Disease Nightmare Thread
 

Hey Maxine,

I lived in the northeast US for a long time, got confirmed Lyme in 98. There is really no cure. I have been through three cycles of doxycycline, and have been cleared of the major symptoms, but what you don't see and what they cannot tell you is the other couple of bugs that run around with it...I have given up following it E.burreala something or other. Bottom line is that you should be o.k. if you did a timely course of dox. If you get symptoms of joint pains or other weird stuff (I got unexplained sprained ankles, and still get them - feels like you can't put weight on it for a day or two and it just goes away), you should get another run on the dox. In the US they were putting the cutting edge doctors off of license for telling the truth about this thing. They didn't want to deal with the costs - the real cure is a long dose of IV heavy duty antibiotics, with diet and lifestyle. The specialists were getting results and they were SHUT DOWN by the ama.

The ELISA tests are bullshit. I could take one tomorrow and I will always have this spectrum present. It never goes away, it's in your spinal fluid. The heart and other problems it can and will cause. I got the stuff 10 years ago and in perfect health, I am now in much less than perfect health with some heart issues.

I have done a ton of research on this, but I gave up on it about 5 years ago when the AMA basically outlawed any treatment other than the standard dox cycle.

I had a pronounced bullseye and I got photos of it for the doctor when it happened. I went through several herx reactions in kicking it. I have it under control right now, so I would like to think, but you will never know what you don't know, and frankly, I have never been the same since. I have lost a lot of the energy that I had, and the lyme was the only thing that ever happened. It's nasty stuff, but you will get through it. PM if you like.

Re: Max's Lyme Disease Nightmare Thread
 

Shoot, if I went to the doctor every time I pulled a tick off me, I'd be a busy man...:thumb.aspx:

Re: Max's Lyme Disease Nightmare Thread
 

Everyone in my family, including myself, has had/has Lyme. We live in a heavily wooded area in MA where Lyme is like a plague.

Please, please plase, DO NOT WAIT FOR A RASH. Rashes do not occur on everyone effected!

So many people in my area have gone undiagnosed because they did not see a rash, and thought they did not have it.

Please watch this video if you are concerned about Lyme:

Under Our Skin

I nearly break down in tears when I watch the trailer. My sister has suffered from chronic Lyme since she was 5 years old. It's horrific.

Re: Max's Lyme Disease Nightmare Thread
 

Count your blessings. My childhood was ravaged by Lyme destroying my mothers life, to the point where she could not walk up stairs, severe depression, she thought she was going crazy, went through multiple diagnoses and a half dozen doctors. She couldn't work. Took her about two years after being diagnosed with Lyme, she has made a full recovery. My sister is still on the path to living a normal life, and I'm not sure she will make it. She's still on IV antibiotics just to function normally.

Re: Max's Lyme Disease Nightmare Thread
 

Lyme disease, although rare in the UK, is treated very seriously and they really pull the stops out to treat it. When you have Nationalised Healthcare, the last thing they want to do is to be treating you with expensive drugs for years, possibly forever. I was bitten by a deer tick in Northern Ireland a couple of years ago, no rash, no nothing, and treated to the best care I could ask for even though it turned out the tick was "clean".
Even my dog was taken in and treated by the local vet for free, despite no obvious bites.
I didn't have to pay a penny, except obviously through my taxes.