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Author Topic: New to Lyme
Salusan
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Hi all,

I’m new to all this and I’m having a hard time finding good information online. Any tips appreciated.

I was bit by a tick about three weeks ago while visiting New Hampshire (I’m from Oregon). I became very sick about a week later—high fever (103.7), headache, fatigue, insomnia, vomiting, etc. After about five days of this, I went to the ER. The ER doc dismissed my concerns about Lyme Disease because I “didn’t have a rash”—but the next day, I found one. Actually, two. One big one, and one little one right next to it. Both of them continued to spread for about four days before fading.

The day I found the rashes, I saw my primary care doctor who agreed it looked like Lyme and put me on Doxycycline. The fevers went away within 24 hours, headaches a few days after that.

What concerns me is that beginning the day after I started doxycycline, I began having intermittent joint pain. It’s pretty mild, but it hasn’t gotten better, really.

My two weeks of doxycycline ends tomorrow and I see my doctor again next week. I’m just curious if I should ask to take more doxycycline if I’m still having these joint pains, or what should I expect from this disease? Everything I can find online just says “two weeks of antibiotics clears up the infection.”

Thank you!

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Bartenderbonnie
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Welcome to Lymenet Salusan

GET IT RIGHT! TREAT THE BITE !
https://drive.google.com/file/d/1tymkZ3rU5suA8VagxOwvwLWghgNGbA_N/view

Print this out and take to your doctor. Tell him better to be safe than sorry. If he won't budge, go to a urgent care facility and start all over. You need MORE doxy. Use your imagination on how to get it. Oregon is a hostile state towards doctors who treat Lyme with longer antibiotic protocols so be your own healthcare advocate and fight. If you need a practitioner that treats aggressively, let me know and I will send you a private message.

Start researching on Lymenet !!!!!
Yes, it's that IMPORTANT!

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Keebler
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Do follow up with your MD as Bonnie suggests.

It may take some time to get in, but, to find someone who is well educated in this matter,

You need to find a lyme literate naturopathic doctor, a LL ND. There are no LLMDs in Oregon.

The Oregon medical board (OMD) is harshly "against" lyme and very uneducated not just about lyme but also about various other tick-borne infections that must be considered.

The OMB pressures doctors to follow the line: no lyme here, and you are lucky you were bitten out of state, in the NE as at least you've got that to hold up to them so you don't have to fight the lie of "not here" --

Still, the OMB pressures doctors to reject the very idea of longer, combination treatment. Many others have even taken this to the Oregon legislature but could not get past the OMB's obstruction.

So, for those with lyme in Oregon (regardless of where it was acquired) most likely you will have to go outside of the typical medical system.

The good thing is that there are several good LL NDs in Oregon, who are ILADS trained and offer not just Rx approach but also key alternatives and support for your individual needs. Sadly, the costs are on the patient - usually.

You might check your insurance coverage and ask the LL NDs office whom you choose if they might be covered to some degree by your insurance.

Back to the other tick-borne infections that should have also been considered at your very first MD visit after your bite. That these were ignored tells me your MD is clueless or has succumbed to the OMB pressure to deny assessment and treatment.

Some of these other tick-borne infectoins - , one - Babesia, in particular - is not like lyme at all in that it's a protozoal infection that requires treatment that is not at all what lyme requires.

Lyme also can become chronic if just treated with doxycycline, although some folks - like you - if treated very early might get lucky many others go on to develop a chronic infection because

doxycycline causes the lyme spirochete bacteria to change into a protective cyst form where no antibiotic can penetrate it. A different kind or Rx, or other approaches a LL ND may use must be on board, too.

Be wary of sun exposure and loud sounds when on doxycline.

Skin - and ears - are more sensitive.
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Keebler
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http://www.oregonlyme.com/home.html

Oregon Lyme Disease Network


http://www.oregonlyme.com/supportgroupsinoregon.html

Support Groups in Oregon

https://www.facebook.com/groups/OregonLymeDiseaseNetwork/

Oregon Lyme Disease FACEBOOK GROUP


https://www.lymedisease.org/get-involved/take-action/find-your-state-group/

Lyme Disease.org - patient education & advocacy

Lyme Disease State Support Groups, online . . . and many other excellent tabs to explore


www.ilads.org

ILADS - International Lyme & Associated Diseases Society


http://www.oanp.org/

Oregon Association of Naturopathic Physicians

Do not go to just an ND, though. They must be what we call "lyme literate" and that includes have completed this course:

https://iladef.org/physician-training-program/

ILADS Physician Training Program
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Keebler
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Doxycycline cautions:

1. Even autumn or winter sun, even early morning or late afternoon sun can burn. "Doxy burns" can be very rough.

avoid sunlight on your skin (even "bounced" sun - or through a window) even for weeks after stopping doxycycline if you go onto a different antibiotic.


2. Food with doxy is vital to protect stomach. But no dairy. Do not take with any multi minerals, either. The food minerals will lessen the medicine level and make it not as effective.

A substantial meal, in the middle with some food before and after the doxycycline really matters.

Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects). take doxy with a substantial snack or meal - in the middle so you've got some food before and after

Avoiding gluten can help with the stomach, too.

3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.

Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down.


PROTECT EARS / HEARING - when taking certain Rx, the ears need protection. Ear plugs with a hair dryer . . . decibel rated muffs with a blender, vacuum, lawn equipment, etc.

Careful around loud music and best to avoid in the ear pods. There is a link in the Liver Support thread that explains why.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.

EAR / HEARING PROTECTION note of vital importance, too.

PROBIOTICS also vital, take a couple hours away from antibiotic (both clock directions) - gut support


a key helper for you now, for support of your nervous system:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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Keebler
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PHOTOS of the RASH - be sure to take (if not yet done). KEEP these as they might be required later in time.

About your current MD: This is really important to keep a good relationship unless and until such time it might become clear if you get obstruction.

1. They may or may not know or be aware to the degree of control the Oregon Medical Board has in their treatment options.

They may or may be have had the chance to really learn more about lyme but if they are open at all - which I so hope they are (a few are, actually)

it's important to keep quiet about this to their staff. Don't go talking all about this to anyone else in their office space.

If the MD is to stretch their luck by learning more and offering additional treatment, they will likely do best by not spreading the news to staff who will then talk about it outside of those four walls.

Now, even if the MD is not open to offering you more treatment or assessment of the other tick-borne infections, understand that it may not be their choice. They may be directed in order to keep their job - to stay in the dark and keep you there, too.

Still, if it's not their choice, you might still be able to have a decent relationship with them for exactly how they might still help you -- and find the tick-borne help from a LL ND.

As you become more educated in all the aspects, keep in mind that you are really lucky in least one way: early days & the rash showed for you.

You still need to approach this with the intent of full education yet your chances are so much better for assessment and treatment options.

When you call a LL ND's office -- or LLMD out of state - make it clear that you were recently bitten, not yet fully assessed, and in which state your unfortunate encounter occurred.

While you really don't need a lyme test - if a doctor wants it done, there are key points.

When testing / assessing other tick-borne infections, sometimes the location where bitten might make a difference in the kinds of tests.

Since you had the rash and illness related to the very tick bite - technically, that's key for lyme diagnosis.

Again, you have proof of lyme with rash and illness, though know that Testing is very difficult and much be done correctly. Most regular MDs don't know this or - stack the odds against the patient by using inferior methods. Just be aware.

A good & true LL ND (or out of state LLMD) will know how to guide you on all this, tough, if you need to know more:


https://sites.google.com/site/marylandlyme/lab-tests

Lyme Tests - what to consider - by Maryland Lyme

anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations:


http://www.ilads.org

ILADS - International Lyme & Associated Diseases Society


https://www.lymedisease.org/

Lyme Disease.org


http://www.lymediseaseassociation.org

Lyme Disease ASSOCIATION


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

Reasons for False Negative (Seronegative) Test Results in Lyme Disease - How the test can go so very wrong.
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Keebler
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While no test is perfect, not always needed - an in-person full assessment of a wise, full educated and experienced LL doctor (whether MD or ND) often is best - here's one of the best labs in the country. Just become familiar with them.


https://igenex.com/

Igenex Lab - for tick-borne infection detection.
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Keebler
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In your own time . . . .

This is becoming your very own personal reference links set. I know it's a lot all at once but I want to be sure you have detail that really matters all here. Protection of your nerve fibers / nervous system is of utmost importance.

I saw an excellent interview yesterday that you might find helpful.

NUTRITION is the most important thing you can do for your best chances of staying strong through this. You might see this as a window of opportunity.

You may be all great here and, if so, well, great. However, my opinion here based on years of my own damage from some things mentioned, years of learning from science and from others, too. Just consider some tidbits:

Avoid all artificial sweeteners. All. Not one is really safe, IMO.

Most LLMDs and LL NDs advise avoiding sugar, of course, and that can have a lot of different names. Also avoid things that turn right into sugar in our bodies, flours of just about any kind.

Your / our brain cells, your nerve fibers must have the best nutrition on board and avoid damage from things that might be confused for food.

Avoid all "vegetable" oils - they are not really from vegetables, they are from seeds, in an industrial processed mix of toxins to nerve fibers. Canola, soybean oils, margarine and fake cheeses are the worst.

Organic unrefined coconut oil is the BEST.

Extra Virgin Organic Olive Oil - cold pressed is good.

Avocados - wonderful good food with healthy fat.. Enjoy with any meal or as a snack. As much as you like (or can afford).

3 - 4 eggs a day - pastured best. The nutrition is different than others when they get to eat grass.

Butter from grass fed / fully pastured cattle, good, too. To avoid the milk solids, Organic Ghee - helps your brain cells, nerve fibers, too. We need lots more real fat like this than most doctors are aware of.

When you can, meat from ruminants that graze on grass / are pastured also best. The nutrients, especially the fatty acid composition is better.

In Oregon, many groceries have good beef and lamb. When you can Wagyu ground beef is best and likely most affordable, yet Carman Ranch and some other ranchers are good, too, regarding the grass fed / grass finished aspect.

all this also means we need zero food "products" and enjoying real food. There is so much more I could say here but at least a couple points are here to help now.

For a treat: a third or half-cup at most of dark berries, fewer cherries. Heavy whipping cream is a healthy delight if you tolerate dairy - with nothing at all added (Organic Valley is clean - zero added ingredients).

More than just a little fruit is hard on the liver and more than a little sugar / fructose can damage the nerves by the release of excess insulin to manage that in the bloodstream. With cream, that stretches the enjoyment of a handful of berries.

You may do well with some RAW pecans or RAW walnuts, too. RAW Brazil Nuts are great for the selenium content, we need that. Three Brazil nuts a day a good start for breakfast, too.

Macadamia nuts the best for our brain / nerves but very spendy. Nuts should be RAW - never be "roasted" when you buy them. That heats them up and then the oils become rancid and toxic.

Still, nuts in small amounts best for most do contain some lectins or oxalates and you don't want too much. About 1/3 cup is a good size serving for a dessert or energy-helper snack.

Though macadamia nuts are nearly impossible to find if not "roasted" - be sure not to buy old ones.

Avoid almonds & spinach due to very high oxalate content.
Avoid peanuts for various reasons, especially the high (toxic) lectin content and propensity to harbor molds.

Much of my advice is based on the work of Nina Teicholz' book: The Big Fat Surprise. You can see many professional presentations of hers at YouTube.


Okay, so the intro to this video below is rather dramatic, this is an excellent interview with a pharmacist explaining what she did to recover from a serious spinal event.

Notice what she says she did for her nutrition and healing.

Terms such as "keto" and "carnivore" might be tossed about and there are places to learn more about all that but I'm not suggesting you would need to go to that extreme.

Be sure to avoid the bad stuff in the food stores and be sure to include some of what she's taking about. The nerves require fat. And enough protein. Grass fed and finished beef - lamb (Oregon has great lamb ranchers) . . . .

A low carb - good fats - approach for you can simply mean avoiding all processed foods, grains, beans, and leaning on some non-starchy veggies.

Lyme and other tick borne infections can really damage the nerves and the myelin sheath surrounding the nerve fibers. That's why what she says also really matters with lyme recovery and to prevent damage if it's not yet occurred..


https://www.youtube.com/watch?v=zO7JNDQS2dc

Episode 123: Dr. Nevada Gray - Keto And Cauda Equina Syndrome (spinal & nerve issues)

What she did to help her remarkable recovery

For the RESTORATIVE SLEEP she emphasizes, she recommends this book:

https://sleepsmarterbook.com/

SLEEP SMARTER by Shawn Stevenson
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[ 06-23-2019, 05:56 PM: Message edited by: Keebler ]

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Keebler
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Since you must avoid any sun on skin exposure, be sure to get a good vitamin D3. Source Naturals makes a great liquid one.

Still, get some daylight into your eyes first thing after you wake up in the mornings. Even out an open window if that's all you can do.

Nothing between your eyes and the daylight (not direct sunlight, of course and without the sun on your skin - or even "bounced" sun reflection. Even in full shade and zero chance of sun on skin, our eyes can benefit from 20 minutes of daylight.
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Lymetoo
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WHEN are doctors going to get handle on this?? [cussing] [rant]

There are other antibiotics for Lyme than just doxy, so keep heart. It could be that the Lyme is causing the pain, not the doxy.

Find an LLMD ASAP .. if you need more help finding one, go to Seeking a Doctor here.

http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

Welcome! but sorry you have to be here!

--------------------
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oops!
--Lymetutu--
Opinions, not medical advice!

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Robin123
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I am so tired of this mistreatment! You are in the crucial time period of the first several weeks of needing to treat so you don't go chronic. You need to see a Lyme-literate doctor immediately, not those who deny care.

Keebler is in Oregon and I recommend that you follow up on her Oregon leads.

Another question, for board readers - when I read of high fever and headache, I think of the co-infection ehrlichia - can these symptoms just be Lyme symptoms or is it possible there's a co-infection involved here as well?

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Lyme248
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When I was first infected, I had a pretty high fever for a few days(I was taking tylenol constantly to keep it down), but I didn't have very severe headaches. My head and neck just felt swollen. I have not had erlichia as far as I know.

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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Keebler
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Salusan,

Have you been able to connect with local groups to get one or more LL ND to call about getting an appointment?

All the articles can wait until you first secure a LL ND in state or a LLMD out of state. Please let us know if you have been able to find some connection. Hope so.
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Salusan
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quote:
Originally posted by Keebler:
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Salusan,

Have you been able to connect with local groups to get one or more LL ND to call about getting an appointment?

All the articles can wait until you first secure a LL ND in state or a LLMD out of state. Please let us know if you have been able to find some connection. Hope so.
-

Thanks everyone for your responses! I saw my primary care doc again and she put me on another 7 days of doxycycline.

I’m a little confused about whether I should try to pursue other avenues of care now or wait until more symptoms pop up? (Especially because I just got the bill from my useless ER visit—$1200– so I’m not in a rush to spend more money right now.) I’d love to hear stories of the path other people’s disease took.

Is there anyone out there who caught it early, took doxycycline, and still progressed to chronic illness? What would you do differently if you could go back?
(breaking up the paragraph for easier reading for many here)

[ 06-30-2019, 03:14 AM: Message edited by: Robin123 ]

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Robin123
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Hi - the regular docs are wrong - it takes at least 6-8 weeks of doxy to stop a beginning infection. And the dosage needs to be sufficient - I think 200-400mg for a doxy dose.

You are still in the window of time to stop the infection. If you wait to develop more symptoms, you'll go chronic and have to deal with this the rest of your life.

I'd really like to see you get connected with the Oregon support groups and get to a naturopath in Oregon who knows what they're doing.

Another possibility is, some people treat the infection with Buhner herbs and there are online support groups for that. I know several people who have successfully knocked out the infection that way.

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Keebler
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I agree totally with Robin's excellent post.
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