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Author Topic: New to all of this
Larae30
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My first lyme's test was elevated/positive, so here I am. I feel so confused about all of this and am not really understanding why there is such a divide in treatment opinions between what seems like the major medical community and ILADS. What about the Hippocratic oath??

I initially got sick in August and after numerous tests, ER visit, etc... my EBV was elevated in acute, so they said mono... Do I really have mono or does lyme's elevate EBV levels too?

Anyways, I feel scared and hopeless about treatment after reading so many people's struggles. I live in an area with ZERO LLMDs and the closest ones (3-5 hours away) aren't taking new patients.

I made an appointment with Dr. P in the Chicago area (2 day trip for my boyfriend and I in the middle of winter....) for later this month, but it is scary paying $500 just for one visit.

I am going to graduate with my doctorate next week and am in so much debt already. I have family coming in, my boyfriend's family is meeting my crazy family, and I think there may be a proposal happening soon. I don't know how I can handle it all when I feel like such crap. It's like my head is full of mush or something. I am so tired all the time and just not myself.

Do I try to openly talk to my dr. about my concerns and mention ILADS? She has been very open and willing so far. I was surprised she even did a lyme test actually. Nebraska doesn't have high rates at all I guess, I can't even find a support group or anything (there is one on yahoo, but I've been waiting for days to be approved).

In short, I am scared and pessimistic. I start my new job Feb 2nd and have to study and take boards etc... I feel like my brain is so slow and I don't know how I am going to function if I still feel this bad. Since starting the doxy, I feel different, but it's hard to explain. I am otherwise a healthy 30 year old female, so I am hoping my immune system can handle it all.

Thanks for reading.

--------------------
Treating lyme, bart and babs

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Keebler
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First, congratulations on obtaining your Ph.D. That's quite an accomplishment.

You've obviously done your homework trying to locate a LLMD and know the jargon.

I don't have any Nebraska area suggestions. However, I will post a set of links from holistic LLMDs and LL ND (naturopathic doctors) and the like. You might get some ideas for what you can do for yourself before you travel to Chicago, or other options.

You might draw the eye of those near you if you go into the edit function and add something to your heading like:

New - Nebraska, contacts needed

--------------

There is a good LLMD in the Minneapolis area, slightly closer to you than Chicago.

Columbia, MO is another option about the same distance but it may (?) require transfer to smaller plane (whereas travel to either Minneapolis or Chicago would likely be just one direct flight).
-

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Keebler
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Holistic M.D., etc.

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures;

Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL links, and

BODY WORK links with safety tailored to lyme patients,

RIFE & BIONIC 880 links here, too.

LOW HEAT INFRARED SAUNA detail.
-

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Keebler
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Questions about EBV and lyme. Ticks often carry many different infections. Yes, ticks can carry EBV.

(You should also be assessed for babesia, etc.)

You might also have had EBV exposure long ago but it stayed dormant and the immune system dysfunction caused by lyme triggered that to surface.

There's no way to be sure HOW it's come about but the reality is that, even with "just mono" the down time and recuperation time can be quite substantial.

I had mono early on when I likely also had (undiagnosed) lyme.

Is there anyway you can wait to take your boards?

Can you take only part of them?

Can you ask for ADA flexibility - special accommodations to lie down or do whatever you need to do to take the tests?

Brain fog is a mighty foe with lyme. We can't just will our brains to work on command - for various reasons. But, in that ND thread, there are links to some support methods that can help.

FISH OIL & GOTU KOLA are great helpers.


Or, if you go to take the boards but find it too rough at that time, can you retake them later, if necessary?

---

Is there any friend or relative who might help in any way? Anyone you know to stay with in Chicago, etc.

I know you are discouraged and that is totally understandable. It's a horrible thing to find out that lyme is so political and that patients are left in the dark.

Still, many have managed through it. But it can be a rough ride at first so if there is anyway you might be able to delay your boards and start of the job, you might just mull that over - and then maybe it won't be necessary.

Also, once you start the new position, will there be any leeway for rest or flexible schedule?

I would not tell your new boss just yet (if at all, ever) but I sure hope you will have some flexibility.

I hope others will be along with more concrete and immediate solutions. Hold on.

If you need help paying for a flight, you might contact MERCY MEDICAL AIRLIFT. They provided me with round trip tickets on a commercial airline - years ago 3 times to see a LLMD.

The guy I worked with is no longer there and if this group can't help, there may be another one or two such organizations. Angel Flight is another.

==================================

http://mercymedical.org/?gclid=CImyh9a07qwCFQNchwod5D4yfQ

MERCY MEDICAL AIRLIFT

Charitable medical transportation
-

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Larae30
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Thanks so much for your response!

I luckily have a wonderful boyfriend who has been super helpful, I cannot imagine feeling like this for months and living alone, yikes.

I do have friends in Chicago, so staying there a night is no biggie, it's just the gas to get there/back and the dr fees. Why do no LLMDs take insurance? It all seems so unethical to me.

I am not sure about the job and boards. I do not want to risk losing the job. I have no money coming in and am going to be in major debt, so I have to work, no choice there. My boyfriend doesn't make enough to support me and make my loan payments. From the new hire paperwork, it looks like I cannot take PTO days until 90 days of employment...BUT maybe if I tell them I have a health issue they will be flexible. Do I tell them I have lyme's or just be more general about having a health issue?

I have been taking doxy in the morning; probiotic, multivitamin, extra C, B12, omega 3-6-9 and zyrtec midday; and the other doxy before bed. I read that you should not take vitamins within 2 hrs of taking doxy and to also avoid dairy. This is all so difficult! The other hard part for me is the no alcohol, as I love wine and used to enjoy going out with friends. I'm really hoping I can get through my graduation week next week. I give a presentation Thurs, have hooding ceremony and a dinner Fri and then graduation Sat.

Also, what if I feel a ton better at the end of this doxy? Do I go with it or question it constantly? I mean, this is likely acute and not chronic. Frustrating!!!

--------------------
Treating lyme, bart and babs

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Keebler
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It's not just that most LLMDs don't take insurance but that Insurance Companies will not reimburse LLMDs.

LLMDs are harassed and even threatened by various "professional" groups and the government. It takes a ton of courage to treat lyme.

There a thread here with more detail but I don't know how to find that right now. I hope someone will post the link.

------------

I'm not sure what to tell your employer but I would

NOT TELL THEM ABOUT LYME

You might tell them you have some health challenge - but ONLY if you are fully, totally, guaranteed hired.

If you are to get insurance coverage through your job, I would not say anything until that kicks in. With a job, insurance should not have to do medical evaluations to determine eligibility so I'm not at all suggesting hiding anything.

--

I'm sorry to say that with Doxy as the only antibiotic, treatment will likely not bring you back to perfect health.

The cyst from - and biofilm - of lyme requires additional Rx, such as flagyl.

Now, backing up, sometimes, a person will feel much better. There have been some treated just with doxy and for a couple weeks who have felt much better.

But it is not at all adequate treatment. So, if you may get lucky, that would be great but you'd still need to do all your homework and have a LLMD in the wings in case of a flair.

The cycle of the spirochete requires a minumum of SIX MONTHS' treatment, with combination meds, according to more than one LLMD.

Others may say a few months.

One of the most prominent suggests treated for a full two months past the point of feeling good again.


But, on average, 1 - 3 years treatment, or longer. There is no way to really predict how long it will take but as you say brain fog is really your main symptom, I do hold out hope that you can get through this in a few months' time.

It's just that so much knowledge is needed if luck is not on your side.

----------------------

LIVER SUPPORT is also very necessary. Milk Thistle, Dandelion, etc. See the "How to find a ND" thread for links about all this.

------------------------

STEROIDS are very bad with lyme.

I wondered, is Zyrtec a steroid? From what I can tell, it is not (but I only looked at a couple sites). It's good to know for certain.

Even "just" nasal steroids can really jeopardize treatment.

Be sure to avoid the kind of Zyrtec that contains Pseudoephedrine.

It's FAR too stimulating for anyone with lyme, as lyme really hits the HPA axis (Hypothalic, Pituitary, Adrenal) and Pseudoephedrine can then trigger anxiety and panic attacks that can be common with lyme (from toxic stress).

--------------------

Have you seen Dr. Burrascano's Guidelines ?

As for alcohol, other than smoking, he is just one of many LLMDs who say "Zero alcohol"

Yes, it can be hard at at time when a little soother would be so nice. And with some partying on the agenda, it may be hard for your family and friends to see you reject all alcohol but it is absolutely necessary.

If you do drink, it's likely to trigger a week long hang over from just a few sips. Lyme is very hard on the liver, and the brain and it just can't take alcohol.

I really am sorry to bring you so many "rules" and all this is just an brief look at that. Self-care is very complex with lyme. But, once that's in place, it gets easier.

For appearances during your celebrations, be sure all the place you are to go can do something fancy for you with a dash of cranberry juice in soda water.

Consider hot teas, caffeine free. Caffeine is also off the list due to the stimulating effects on adrenals.

Also, very important: AVOID ALL ARTIFICIAL SWEETENERS & MSG - these can trigger anxiety and panic attacks for lyme patients.

STEVIA is a good option for a plant sweetener but some taste better than others. I like SweetLeaf Stevia Clear liquid - but the packets will be best for when you go out.

When you take your boards, eat SALMON or SARDINES to help you think. In addition to pills, the real fish is so much better for your brain right now. Try to get WILD (fish that is), even if in a can.

I wish you some sense of calm in all this - so I hope my magic wand's fairy dust will travel your way.

Take care.
-

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Keebler
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NASAL help
----------------------

Tammy N. just posted this:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=112743;p=0

Topic: Dr. K's Recipe for Chronic Sinus Infections

Fill NETI POT with warm filtered water, then add:

1/2 tsp of sea salt
1/2 tsp of baking soda
1 tsp of Xylitol (natural sweetener)

The concept is that the staph eats the sugar (xylitol), then explodes and dies.

================================

http://www.seagateproducts.com/olive-leaf-nasal-spray.html

Seagate Olive Leaf Nasal Spray

------------------------------------

http://www.seagateproducts.com/olive-leaf-extract.html

OLIVE LEAF EXTRACT - SEAGATE (one of the best brands there is)

This helped me avoid systemic candida from antibioitics when probiotics were just not enough for me.

The capsules also really help my sinuses, and so much more. If you get this, as with all supplements, start with just one a day.

Now, you should still have some targeted liver support like Milk Thistle, but if I had just one supplement that I could afford, it would be a toss up between OLE and andrographis.
-

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Larae30
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What is the best probiotic to take?

--------------------
Treating lyme, bart and babs

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Larae30
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and do you think I should discuss with my dr. all of this info? or just wait until I hopefully see the LLMD later this month (weather permitting...)?

--------------------
Treating lyme, bart and babs

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undiagnosed22
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Good probiotics -

Florastor (I take 2 a day)

VSL # 3 (I take 3 a day)

Therelac (I take 2 a day)

other people might take more or less...

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TF
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Here is a tape of a show on lyme done by a Boston TV station. It explains the medical controversy that has surrounded this disease for decades:

http://www.kettmann.com/Lyme/Save/

Then, click on "Here"

Do not jeopardize your treatment by drinking alcohol. The top lyme disease guru in the world says that is a sure way to fail lyme treatment.

Here is a quote for you:

"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation." (page 17)

And, later:

"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
3. Absolutely no alcohol!
4. No smoking at all.
5. Aggressive exercises are required and should be initiated as soon as possible.
6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index.
7. Certain key nutritional supplements should be added.
8. COMPLIANCE! (page 27)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Get to the lyme doctor and do whatever he says. Expect to treat this complex illness (actually, it is a number of illnesses) for a number of months. Be a good patient and you could have good results. Be a poor patient, and you get to do it some more.

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Larae30
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Yeah, I am not drinking any alcohol, it's just hard and will be harder around graduation and holidays. People will probably think I'm pregnant [Wink] I've been alcohol free for about two months now (I have had a couple sips of wine in there, oops).

I am getting plenty of sleep since I have time off right now so that is a good thing.

When does lyme become chronic? If my symptoms started in August, is it still acute or is it chronic? I guess my hopes are up since I did catch it earlier than most?

Is coffee an absolute no (as long as it doesn't interfere with sleep) or should I do decaf? I haven't been doing any caffeine the past month or so, but do miss coffee. I have been drinking sodas with natural sweetener.

Do I go ahead and exercise even though I feel dizzy? I haven't been since I was so out of it, but maybe I should start?

So I shouldn't talk to my regular dr about it anymore and just wait until I see the LLMD? I'm really hoping the snow stays away for my appt.

--------------------
Treating lyme, bart and babs

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Keebler
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-
Your regular doctor likely does not have the information needed to properly guide a patient with lyme.

However, you say your GP is open and willing so that is not an insult, just how it usually is. It does sound like you can take the ILADS link to her and see if she is open to helping as best she can.

ILADS: www.ilads.org

Also realize that she may be under pressure to stay low key. I'd certainly not go telling too many people that she is treating lyme or she could be pressure to stop.

Some insurance companies actually give bonuses to medical clinic in which NO doctor tests or diagnoses lyme. So, if one doctor does, the others can loose a bonus.

Hopefully, there is not the political pressure on your doctor but realize that it can be very real so fly under the radar.

You can ask her about the adjunct suggestions for her take on it. You might also see if there is a N.D. near you - and maybe hope they are also ILADS educated.

I searched and there are 11 NDs in your city. But the search page I found did not list phone numbers.

But, I would not put a penny out on someone who is not ILADS-educated and totally lyme literate. Save your money for an expert.

I'm just hoping that even if there is not a LLMD near you that, maybe you will find a LL ND (who could then be your home base support even if you travel to see a LLMD). Many times, a MD will work with a ND.

-------------

I really don't want to be the one to answer two of your questions but you deserve some discussion since you asked.

1) acute vs. chronic lyme

You say your symptoms begin in August. I'm not sure when you might have been infected, though.

Still, while early treatment of an infection increases the chances for it to be more acute than becoming chronic, there is never a guarantee.

One of the sons of author Pam Weintraub in "Cure Unknown" was treated immediately after being bitten and developing a bulls eye rash. He say one of the best LLMDs. His case still become chronic.

Still, I've heard of couple people who got treatment fairly early after being bitten and they seemed to do rather well and get back to life in a month or two.

I'm not sure anyone can say. However, as for acute vs. chronic, I think "acute" is really a myth.

For, in just 12 hours after being bitten, borrelia spirochetes can infect the neurological system. Once the nerves are infected, that's chronic. Still, all bets are off as to how one will proceed. There are so many factors.

Sorry I can't be more assuring.

2) you want to know if you should take some protective measures with supplements now or wait until after seeing the LLMD in a few weeks.

I can't tell you what to do. I can only say that, in my experience, not having knowledge about adjunct care greatly hurt me. But, then I went decades being undiagnosed.

I did nearly have to live on antibiotics all through college decades ago. I developed system candida then, and many times afterward.

Even after learning about probiotics, they were just not enough protection for me.

Olive leaf extract (OLE) was a true gift in that regard. So, I will never again take abx (antibiotics) without also using OLE.


Antibiotics can damage the liver (as can lyme and EBV). I also will never take abx without Milk Thistle or something comparable.

Please look over that "Find a LL ND" thread and scroll over the books.

I suggest Buhner's "Healing Lyme" and also "The Lyme Disease Solution" by Dr. S to acquaint you with how supplements work for lyme patients.

I think that thread also has links to more detail about Olive Leaf Extract.

Also be sure to look over Dr. B's treatment guidelines.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

p. 27 NUTRITIONAL SUPPLEMENTS

p. 31 SAFE EXERCISE explained in Physical Rehabilitation section

-------------

Caffeine.

Why no caffeine, it's not just about sleep but also about stressing adrenal function. Caffeine can rev the adrenals and further pull you down.

Decaf coffee still has a bit of caffeine so see you you feel. Best if organic and non-chemically decaffeinated.

-------------

Exercise.

Aerobics are not allowed during infection. There can be damage to the heart if aerobics are done during infection (and you are dealing at least lyme and EBV, maybe more).

Lyme also damages the mitochondria (the tiny "energy packs" that, well, give us energy. Pushing that can result in more damage.

The adrenal system is usually very overwhelmed. Aerobics can damage already weakened adrenals.

The immune system is depressed after aerobics.

SAFE EXERCISE:

However, other exercise is good, as best you can without "payback". Increasing circulation is important. The most beneficial kind of movement is something that you enjoy and does not wear you out.

Pilates, Restorative Yoga, Tai Chi, Qi Gong, Walking -- any of those can be done on some level each day.

One minute five times a day is better than five minutes at once if that is too much.

Also good to move lymph waste:

Gentle rebounding on a mini trampoline (feet barely even leave the mat) is good - however since you said you are dizzy, this may not be a good idea as it can stress the inner ear.

Weight strengthening. Every other day, not every day for weights.

-------------

VERTIGO, DIZZINESS

Dizziness is common with lyme and also can be part of the "herxheimer reaction" to antibiotics. These help:

GINGER CAPSULES

MAGNESIUM GLYCINATE or CITRATE

LIVER SUPPORT is vital to help decrease inner ear symptoms - as toxic overload can damage the ears.

Again, Milk Thistle & Magnesium are as good for the ears as they are for the liver.

-------------------

I know this is a lot to take in at warp speed. I hope you will have time to go to the authors suggested as they are much better at explaining all this than I.

A sharp sense of humor and keen appreciation of irony with serve you well. Good luck and take care.
-

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Larae30
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Thank you for all of your help!

I'm thinking I will just ask my dr. if I can lengthen my doxy by a week, so that I am at least taking it up until my LLMD appointment. I'm nervous about getting into the ILADS discussion... but maybe I will try to mention it briefly? Should I also tell her that I am going to see a LLMD?

--------------------
Treating lyme, bart and babs

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Keebler
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-
Q: Should I also tell her that I am going to see a LLMD?

That would be okay but I would not say where or to whom. Definitely do not want a LLMDs in your chart. Don't use the term "LLMD" for now. Just say lyme specialist.

Maybe later if she can be trusted but once it's in your chart, she may not have control over the name if she is in a clinic.

I am so sad that this fog around lyme is such. We've all seen too many good LLMDs careers killed.

The documentary "Under Our Skin" is excellent to watch as soon as you can. This will help you see how LLMDs are treated.

www.underourskin.com

Under Our Skin

http://www.underourskin.com/home-store

December 2-for-1 sale

--
Under Our Skin was offered to every PBS station last May and through summer - even for two years at no charge. And, you know what happened?

Some aired it at good times. Some aired it only once, at 3 a.m. and some refused to air it when the IDSA (Infectious Disease Society of America) put pressure on the local PBS stations to ban it.

The IDSA is very much the bully keeping doctors from treating and patients from access. That is so well explained in the film.

The film is very true to life. Like thousands of others, I've been battered by the medical system regarding lyme. I hope you can avoid all that.

Seeing this film is very important to make your way through all this.

-------

http://movies.netflix.com/WiMovie/Under_Our_Skin/70118373?trkid=2361637

NetFlix - Under Our Skin

While they do not have this right now, you can read 253 viewer reviews. They did stream it this past summer.

You might check to see if this is available on Hulu if you subscribe to that but it's really good to have your own DVD and one to loan to your doctor, family and friends.
-

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Larae30
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I had found that documentary, but haven't watched it yet because it made me so sad after watching just the preview. A part of me wonders if I've had this a long time, but not sure why the sudden horrible onset that began in August would come out of nowhere. I am trying to stay positive and optimistic, but it is a challenge. I wish my appt with the LLMD was sooner.

--------------------
Treating lyme, bart and babs

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In19944
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You should watch it. It's on Hulu for free. It may seem sad from the preview but has a hopeful ending.
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Larae30
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I'm feeling strange today, like my hands are shaky and even inside my head a little? My anxiety goes so high when I feel strange.

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Treating lyme, bart and babs

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Larae30
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I feel so hopeless lately. I just found out my car got towed for being parked in front of my apartment for more than 24 hours and I had no idea the city ordinance even existed. I am going into so much debt and have no money for any of this and I have felt so sick lately. I graduate next week and have family coming in and I don't know how I'm going to get through it. I can barely take a shower and get dressed without feeling horrible.

[ 12-08-2011, 04:54 PM: Message edited by: Larae30 ]

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Treating lyme, bart and babs

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droid1226
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I feel terrible for you. I know what you are going through first hand. I'm going through it right now. You need assistance from friends/fam. I had to borrow 1000.00 from my parents who are sick and broke themselves for my first LLMD appointment. I'm just starting treatment and it's not fun or cheap. I have trouble walking, thinking, and breathing sometimes.

I miss my friends, going to the bars, all the stuff a young man should be able to enjoy.

You aren't the only one and you are probably recently infected. Treatment is possible and may be easier for you than others. You just need a "no surrender" type attitude and accept it's not going to kill you no matter how terrible you feel. Stick to the diet, get on the regimen, adhere to Dr.B's notes, and you'll beat it.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Keebler
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Larae,

If there was no sign posted about that 24-hours, you have a right to contest that. You might also plead for mercy due to illness.

And, really, this might sound cold and harsh but I'm saying it with an understand tone:

You might need to admit to being ill. To yourself; to your friends.

You might need to ask for help with even daily functions of shopping, cooking, cleaning - and with researching.

This is a very serious matter and your body is calling for serious changes so that it has a better chance. You might need to alter some activities that are planned - or at least seriously plan how to get through them by altering everything else in your schedule that requires energy.

You need to plan for time resting. Carefully.

Believe me, most of us tried to be normal and it just doesn't always work.

As for the anxiety: PETER GILHAM'S NATURAL CALM has magnesium. Magnesium is the number one helper for anxiety and that "wired" effect.

Take care.
-

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Larae30
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I guess it is a city-wide ordinance and I talked to the police dept and the towing place and they couldn't do anything. Thankfully, my boyfriend's boss decided to give him a nice bonus today, so that comes in at the right time!

I don't know whether to tell my friends I'm graduating with, but I'm sure they'll be able to tell that I'm not feeling well. I don't think I'll be able to go out and celebrate even [Frown]

Sometimes I do feel like I am going to die and that gives me more and more anxiety.

I have the natural calm!! I have read though that it is bad to take with abx? Is this something I misread somewhere? Also that you're not supposed to take any vitamins for 2 hrs around taking abx? This is all such a huge change for me, especially the trying to eat lowlow carbs/gluten part...

Thank you all for your words. I just can't believe all of this can be caused by bacteria in my body. Sometimes I feel like I'm going crazy. I am so anxious about the weather for my LLMD appt later this month. If it is too bad to drive, I'm out of luck for a while... I really have to take boards and be able to start work in Feb also. I am having so much trouble staying positive.

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Treating lyme, bart and babs

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Keebler
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Magnesium is very important - just don't take it at the same time as abx. Take a couple hours either direction of the clock.

Fish oil is also vital to ward off anxiety.

Avoid MSG and aspartame (Google for all the names they hide under). I'd also avoid anything with "natural flavors" in it. They can really mess with our brain chemistry.

----------

Low carbs can be a problem, if interpreted literally.

You need carbs. It's not "low" that matters but the kind.

Simple, refined carbs - avoid as much as possible.

Complex carbs, whole foods - essential.

Vegetables are carbs and you need LOTS of veggies in all colors & textures. Fruits: low sugar berries and tart apples, after a meal is best.

Quinoa can be a life saver as you transition to a gluten free plan. Quinoa is a seed and very nutritious and balanced.

For regular quinoa, a VERY fine meshed strainer is needed to first rinse well before adding to boiling water. Then, it's just 20 minutes.

Red quinoa does not require rinsing and is even more complex.

WILD rice is a good choice. It's really a grass and, again, very nutritious, complex and balanced. Forbidden BLACK rice, too.

When you go out, brown rice, a small serving with lots of veggies or a black bean soup is far better than white rice.

Careful with Mexican or Spanish rice in restaurants. They often ADD gluten and MSG.

Have a trusted bright friend call around for you so you know which places, and dishes, are safe when you go out with family - or if you order in.

Be sure to get enough protein and good fats with each meal and snack. Nuts are excellent.

-----------

As for celebrations, with relatives coming in, can you schedule private dining rooms at restaurants for a reception and meal? Even for a lunch, a private dining area will be much easier on you.

Can you plan to have food picked up or delivered instead. Alter the celebrations for what will work for you. Maybe even consider waiting to celebrate.

Really check in with your body and try to get an honest sense of what kind of activities it will support in the next few weeks. Take graduation out of the picture - your body doesn't know and (like the weather) can't care.

Be very real when communicating with your body.

Then, if you are at all like me, you will start to "negotiate" with your body.

I know all this can sound dangerously close to tempting a split personality of sorts but I don't know how else to describe it. Maybe a sort of meditation sort of calmness and checking in.

Out of all this that comes prioritizing.

------------------------------------------------------

SENSORY CONSIDERATIONS for graduation events.
-----------------------

SOUND

Are you sensitive to sound?

Drums? Deep vibrations or fast beats as in "World Beat"?

Rap or Hip-Hop beat (as the emphasis is on 2-4 rather then 1-3 as in other music and that seems to irritate some sensitive brains).

LIGHT

Flashing lights from cameras?

Strobe or other dramatic stage lights that may be "on speed" for any graduation show or event?

ACTION

SCENTS

-----------------------------------------------------------

As for whether to tell friends in your graduate program, I would NOT mention the word lyme but it's fine to say you must have a bad flu. You may not be able to hide the truth that you're not well. If you can, fine.

Everyone need not know. But, I would not trust classmates from spreading the news to potential employers of your future. Those in your program are going to be out there in your field. What they know can affect you at various points in the future.

But, for trusted friends and close family members, I just don't see how you can pull off being around them for an extended time and not at least say you have a bad flu (of course, then they would think you are contagious and they may retreat).

Suppose you could use the old "food poisoning" excuse. It used to me my old standby even when I knew something was terribly wrong but did not know what.

If you think you can get by and not tell anyone, go for it. I'm just thinking that it may be more protective for you to share what you are going through.

Relatives, especially, will feel better with the truth. They may misinterpret your hesitations.

---------------------

RIFE ?

You said there is no lyme support group near you. Still, wonder if, somehow, you could find someone with a rife machine who would be willing and able to offer some help.

Knowing all I know, considering all the roadblocks, I suggest doing all you can to try to borrow a rife machine - or go to someone for treatments.

The most likely source, professionally, would be naturopathic physicians. There are 11 in your city.

However, if they have a rife and treat you, they really need to know ALL about how to do this with lyme. I've had well meaning NDs treat with and result in disaster because they were lyme ignorant and rife-lyme ignorant.

You could post a new thread something like:

"Looking for rife help in ________ ."

--------------
I am not any kind of medical professional. My suggestions are based solely on my own experiences and personal research.
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Keebler
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Indeed, lyme can be very serious. It can even be fatal. I'm not trying to scare you but, it's important to know this so as not to put yourself in situations that are just too stressful right now.

All you express is very common and understandable.

Sorry that I'm out of steam for addressing some of your comments about trying to be positive, etc.

I just have no energy for that after thinking of the practical matters. And, I am truly sorry to be the one to toss so much at you. Since doctors have dropped the ball, you have to get up to warp speed on your own with a very complex illness.


Borrelia is one of the most toxic infections known to man. One researcher has stated that it's second only to botulism, but FAR more complex in its nature and MUCH harder to treat.


I hope others can speak to the emotional components of this and offer you encouragement. That's just not my forte.

I used to try to "do" "yippy skippy" but I was lying to myself. I just could not fake being positive - but I found another way to fuel that within myself.

My best advice for staying "positive" is to stay "honest" and take the best care of yourself as possible.

I'm not sure it's possible - or even healthy to try to force "positive" other than that you are becoming empowered to do the best you can for yourself, each hour. Hour by hour.

And there's a positive force to empowerment.

Love will get you through this. Love for yourself, for life, for others.

Love for nature; for music. Surround yourself with sensory nourishment as much as possible - for positive connections.

And remember your love of laughter (and, hopefully, appreciation of irony). These are also positive forces to nourish your power supply.

Hopefully, you will feel their love coming back to you.

Love is a quiet kind of positivity that is probably your strongest ally. No matter what, feel the love. Nurture it.

From love and determination comes the ability to become empowered. Knowing that others have come through this, well, that's a positive picture.

Hold on.
-

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Larae30
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Thank you, Keebler. I have told my close family and friends about lyme's, but no one outside of that close circle. My eyes have been very sensitive and I know there are going to be a lot of cameras and flashes...
We are having my main celebratory lunch in a separate room in a restaurant.
I just feel so bad because I have family flying in who I don't see often at all. I only see my mom or dad once every couple years. There are going to be so many family get togethers and I don't know how to get through them. It's like I'm floating around in some other world right now. I also have to give a presentation one night too, ugh. I will just have to try to do my best.
Thanks for all of your info!
I am currently already taking the calm mag thing, omega 3-6-9, vitamins, etc... BUT I do need to get a better probiotic I think.

--------------------
Treating lyme, bart and babs

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Keebler
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Larae,

I have to break this up to read it. You write:
-----------------------

Thank you, Keebler. I have told my close family and friends about lyme's, but no one outside of that close circle.

My eyes have been very sensitive and I know there are going to be a lot of cameras and flashes...

We are having my main celebratory lunch in a separate room in a restaurant.

I just feel so bad because I have family flying in who I don't see often at all. I only see my mom or dad once every couple years.

There are going to be so many family get togethers and I don't know how to get through them.

It's like I'm floating around in some other world right now. I also have to give a presentation one night too, ugh. I will just have to try to do my best.

Thanks for all of your info!

I am currently already taking the calm mag thing, omega 3-6-9, vitamins, etc... BUT I do need to get a better probiotic I think.

(Larae )
-

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Larae30
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Keebler-
I don't find any NP's in my city when I google, but I do find one in Omaha; I'm in Lincoln.

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Treating lyme, bart and babs

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Keebler
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Please read in an understanding tone.

Your best is about taking care of yourself, not keeping up appearances.

I would consider cancelling much of this. Really.

Cancel the presentation.

There are people in the audience who may be making decisions about you in the future - you cannot afford to do this right now, with the symptoms you describe.

Maybe even cancel your relatives. Let them save the flight and hotel money and then come see you separately or some other time.

What happens if you collapse at any time around any of these people? What happens if you startle so from the lights?

I don't want to go into further detail about what could happen from the light flashes but I do hope you will cancel as much as possible.

Your job right now is to maintain homeostasis for your body, your brain. THAT is your key to being able to have a future.

Now, if that presentation is to a small group, and you can manipulate the sensory cues, maybe.

You could ask for NO flash photos be made at all in the room while you speak. You talk to the "emcee" beforehand and ask them to read an announcement of NO FLASHES.

Of course, for families who have traveled many miles to see their loved one at a lectern, understandably, they WANT photos.

So, that's to be considered.

MAGNEIUSM and FISH OIL are your best bets to be able to handle the flashes. Magnesium up to 2,000 mg a day, in divided doses (and up to bowel tolerance and then back down a bit).

FISH OIL by the spoonful a few times a day. COCONUT OIL, too.

ADRENAL SUPPORT such as ashwagandha.
-

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Larae30
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If I don't do the presentation...I don't graduate, it is a requirement. I don't think I have a choice on that one, unfortunately.

I don't think my mom or dad would cancel, they'll prob want to see me even more ha.

I will do my best.

--------------------
Treating lyme, bart and babs

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Keebler
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If others' notice flash sensitivities, you can say it's from a new eye drop. You can ask for those in your circle to let you know before they flash.

Are there places you can go to rest at times during these events. Call the property managers and see about that.

Also do a "sensory practice run" for your presentation. Get acquainted with the layout, note any sharp contrast of light/dark, and where the overhead lights will shine, etc.

Ask the responsible person to "sound proof" any doors that can slam shut. They can do this by putting tape over the metal do-hicky that clicks, or some other method.

Introduce your parents to some buddies so you can be free to go rest in the quiet and in the dark. Or take them with you as they may also appreciate a little makeshift retreat.

Then, you'll be able to relax and enjoy yourself better.

Walnuts, and salmon or sardines are the best foods for me in situations like this. Keep your blood sugar stable.

I'm sure when you focus on the love and appreciation for your dissertation subject, that will help carry you through. It's about sharing and that can have some real power to it.
-

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Larae30
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Nurse just called with results from the Western Blot and said that the IgM was positive, not the IgG. I know from reading that it is not an absolute to whether it is acute or chronic, according to her, it is acute. I will think of this as positive news because I think it is a new thing within the past few months, since my symptoms started.

I am going to go to an infectious disease dr. just for kicks and ask them all of my q's and see if they are even knowledgable. I would like to at least get another week of doxy to hold me until my LLMD appointment.

I am so glad that I have proactively advocated and researched for myself. I have learned that I cannot really trust dr's.

If I hadn't have asked to be tested for lyme's, I would just get worse and worse over the years and not know what is going on, so I am thankful for the ability to educate myself and also thankful for everyone on here who has helped me and answered questions.

--------------------
Treating lyme, bart and babs

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Keebler
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Yes, since you sense this is just a few months along, that can be very helpful for your recovery chances.

Sorry to shift the light out of your hands but the nurse does not have the interpretation correct. In lyme, the IgG and IgM are different from those tests with other infections.

For borrelia, IgM usually indicates active chronic. Some might call it active persistent.

IgG would indicate more acute, perhaps more recent. But, really, with lyme, all bets are off.

Chronic can also be acute, in that it's very active.

By the time a test will show anything, it's disseminated. Whether "disseminated" becomes chronic or not is usually a very fine line and a toss of the dice.

It takes just 12 hours for borrelia to become disseminated, so whether IgM or IgG, acute or chronic, it can be a meaningless distinction. Lyme is lyme.

There is no way to know exactly how long treatment will take or what combinations will work best.

It's important to also be assessed for coinfections. Those would need different medicines or different rife frequencies.

Support methods make all the difference in how well treatment is tolerated, though.

I saw that you are interested in learning more about rife and I commend you for that. I often wonder "what if rife were to the first line of treatment?" - I think it holds promise.

Still, if you can get to that LLMD in Chicago in a couple weeks, he can better assess you for all tick-borne infections and give you a better idea of what you are looking at regarding a time line.

Experience counts for so much in being able to guide you. Be sure that doctor is ILADS "educated" and, hopefully, he keeps up with all their conferences, etc.
-

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Keebler
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Larae,

You say:

"I am going to go to an infectious disease dr. just for kicks and ask them all of my q's and see if they are even knowledgable.

I would like to at least get another week of doxy to hold me until my LLMD appointment." (end quote)
-------

Actually, you probably won't get more doxy (and that just turns the spirochete to cyst form unless you also take flagyl).

IDSA ID doctors (Infectious Disease) do not believe that the IgM means active. They do not believe in chronic lyme.

They will not take your IgM as important. They will see the CDC negative IgG as proof you do not have lyme but that the IgM could mean you HAD it, but no longer.

IDSA ID doctors do not believe that the lyme spirochete can change forms or has a long cycle for necessary treatment.

They do not believe in combination treatment or even (usually) recognize coinfections (although babesia is getting more attention lately).

They are very incorrect in 99% of the way they look at lyme and treatment.

Now, once in a blue moon you may stumble upon an IDSA ID doctor who questions the IDSA stance on this. But be prepared to be dismissed, told you are depressed and just need to face the world head-on.

I sincerely hope you find an ID doctor who has a brain and desire to learn and has studied more about this. Even so, they are tied to certain practices and are monitored. Many have great pressure to not diagnose lyme.

Many IDSA ID doctors will insist upon a current bulls eye rash AND a lumbar puncture (spinal tap) to diagnose lyme.

A lumbar puncture is not an effective test for lyme. It can be painful, cause headaches and fatigue for up to 2 weeks, and is costly.

It is NOT a good test for lyme. For other tick-borne infections, there are better, easier and safer tests but, still, most labs get it wrong.


If, by chance, you are offered STEROIDS. Decline. Steroids can make lyme MUCH worse. There are other anti-inflammatories listed in the lyme treatment guidelines and LL authors' links.

I wish you could watch the documentary "Under Our Skin" before you see that ID doctor. It will equip you.

I know you are set on this appointment (and that would seem logical & understandable - but not in the world of lyme and the IDSA).

You do run the risk of getting your file red-flagged by even bringing up lyme to an ID doctor.

Your GP did not sound like she would red-flag you, though. And would your GP not give another week of doxy? Flagyl?

I wish you the best of luck.

Take care.
-

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Keebler
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Remember, too, even with a positive IgM for lyme and classic lyme symptoms, that many of your symptoms can be made worse by a possible magnesium deficiency or omega fatty acid deficiency (&/or other nutrient connections).

Candida and a herxheimer reaction also contribute.

I don't intend to be negative here I just want to protect you from the absolutely crushing experiences that I had dozens of times over decades.

If you "know your audience" going in, you won't be so shocked when they show their colors or disappointed when dismissed with only a psych prescription in hand instead of abx.

IF this ID doctor turns out to be a ray of light among the usual cast of lyme-ignorant doctors, then you can be pleasantly surprised.

As you say there is no lyme support group in your city, you might make two calls: one to the CFS (Chronic Fatigue Syndrome) support group; another to the Fibromyalgia support group.

As both of those "umbrella diagnoses" frequently turn out to be lyme (or other chronic stealth infection), you might ask if anyone there has seen this ID doctor with whom you have an appt.

Then you can get some consumer feedback.
-

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Keebler
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There are so many professional articles that confirm and detail what I've shared. But my collection of links is stuck in my defunct iMac.

I hope others can post some links to explain. I know it's always best to show WHY I think the way I do - or WHERE I learned all this.


Fortunately, today RDayWillCome just posted this - it explains a lot about the controversy:


http://healthimpactnews.com/2011/lyme-disease-misdiagnosed-underreported-and-epidemic/

December 9, 2011

Lyme Disease: Misdiagnosed, Under-reported, and Epidemic

===========================================

You can ferret out facts here:

--------------

LymeDisease.org - http://www.lymedisease.org/

One of the best patient education & news sites

-------------------

Treat the Bite - http://www.treatthebite.com/

Time for Lyme - http://www.timeforlyme.org

Turn the Corner Foundation - http://turnthecorner.org/

Lyme Disease Association - http://www.lymediseaseassociation.org/

Under Our Skin - documentary - http://www.underourskin.com

Cure Unknown - http://www.cureunknown.com/

ILADS - http://www.ilads.org/

CanLyme (Canadian Lyme Disease Foundation) - http://www.canlyme.com

IGeneX Reference Laboratory - http://igenex.com/Website/
-

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Marcie
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Hi Larae
I see the same llmd in Chicago. He has an office in Iowa too. Would that be closer for you?

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droid1226
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My GP sent me to an Infectious Disease Dr. and I showed her my + positive WB and ELISA....

She said, and I quote "I have seen hundreds of patients like you, looking for a lyme diagnosis. I'm not going to be the one. Please go elsewhere."

She also questioned where I received the + blood tests and it clearly says Igenex on it...She asked if that was an accredited company and had never heard of them.

An ID isn't going to help you. See an LLMD

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Larae30
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Yes, the office in Iowa is closer, but I couldn't get in to that one for another two months, so figure I might as well go an extra few hours to Chicago to be seen sooner!

If I see him again, I will def. try to do the Iowa office for sure.

I don't think I will even see the ID dr. anymore. I was just going to go mostly to see if he even knew anything, but I won't waste the money on him.

Why are these dr's ignoring research? I really don't get it. They are going against the Hypocratic oath in my opinion.

So today I had a huge fiasco with Walgreens and my dr. I think it's time to find a new dr. I had mentioned that I have a lot of anxiety and would like something like xanax to help get me through the 3 days of graduation activities because I know I will be SUPER anxious with family coming in, boyfriend's family meeting my crazy family, etc...

So I get to Walgreens 3 hours after the dr. should've called in the prescription, fine, I wait...

I get the prescription and get to my car and open the info packet and see it's a SSRI. WTF! Why did she prescribe me a SSRI? SSRIs are very dangerous in my opinion, especially when I wanted something SHORT TERM. I feel apalled that they would prescribe a SSRI for someone who has not even seen a psychiatrist/mental health professional. I was on a SSRI years ago and the withdrawal was the worst time of my life (up until all this lyme business).

It all got figured out and I ended up getting home with xanax, but jeez.

I don't know how to stop worrying about the weather cooperating for the Chicago trip because I have got to get into the LLMD ASAP!

Right now I am most worried about having coinfections and making sure the lyme bacteria is KILLED.

Even if I feel back to myself after the 4 weeks of doxy, I likely will still have lyme's? Don't some people get cured within the standard treatment, especially if it's acute, or does that NEVER happen?

No matter what, I WILL go see the LLMD (weather permitting...) and continue to rack up debt I guess.

--------------------
Treating lyme, bart and babs

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Larae30
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P.S. I do take magnesium and omega 3-6-9 and today just got a better probiotic. Thanks for the info. Should I continue extra B12?

--------------------
Treating lyme, bart and babs

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In19944
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Good to hear you got your prescription. Xanax can be especially helpful to Lyme/Neurolyme patients. It has been a lifesaver to me.

I hate to tell you that after a month of untreated Lyme even being acute, it's not likely to be killed completely. Acute generally tends to be people that get the bullseye rash and go to the ER within weeks.

You are doing the right thing getting to an LLMD ASAP. Extra B-12 helps me alot. Make sure to not make things worse by eating a correct Lyme diet and no booze.

As far as the hippocratic oath, the doctors are obeying it technically. Most do everything they can to the best of their knowledge. But, no doctor is going to risk 8-12 years of training to treat something they are unaware even exists. They go by the CDC standards that are antiquated and haven't been updated in years.

Infectious Disease specialists are like burning your cash when it comes to Lyme.

You're on the right track, continue on exactly what you are doing. Try to stay positive, tell your family straight up what's going on. Maybe not your employer...Good luck

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Larae30
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So how will I ever know if I eradicate everything? I am 30, close to 31 and want to at least try to have one child at some point. I don't want to think that I am cured and then have a kid and they suffer with it. I feel scared for the unknown future.

--------------------
Treating lyme, bart and babs

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droid1226
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I understand. Honestly, the best thing for you is to read Dr. B's notes in your free time and adhere to them.


I am 33, newly diagnosed and am having to put off starting a family until I get better. I've learned that being angry doesn't help. The system is flawed in every way....Concentrate on getting healthy. Life isn't over.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Igor's mom
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Larae30:
Try to get some xanax or klonopin. The anxiety is not worth going through at the beginning I was the same, I got on Remeron and Klonopin. I had a terrible LLMD who did not tell me about probiotics or about taking Florastor which you must do to avoid getting c difficile or leaky gut (which I have).

You are doing really well figuring this stuff out.
Take time to do the things right, save your money and time and see a good LLMD. Get the right tests and do not rush into seeing crappy lyme doctors of any stripe.

Take florastor and probiotics two hours away from your anitbiotics (ABX).

Also go and buy some acetyl-carnitine and carnitine. Take three acetyl carnitine in the am and one carnitine at noon. These will help your brain. In about 4-6weeks these will help your brain fog clear.
Take deep breaths.
Remember to breathe.
Don't add unnecessary pressure to yourself. Sleep a lot.
Try to find support in faith, friends, family, pets, music.
You can try l-theonine too for anxiety.
Remember to breathe deeply.

You will find support here.

You wil find your way through this, it will be hard.

You already know this, it is not what you wanted or expected, none of us did.

You will be well again one day. You must believe that.

The path is unique for each of us, but everyone I have spoken to or written to has gotten better in time.

Sometimes it has taken them extraordinary effort. Some are not back 100% but they are still better.

I am better after a year of some crappy treatment, some good treatment and some extraordinary treatments.

You will be okay. Try to tell yourself that everyday.

Breath deeply.
Get some meds to help you rest your mind and body.
sleep meds and anti-anxiety meds are good, herbals are good too, over-the counter ones are good too. Find what works for you and try to get our body and mind to get out of the fight and flight mode it is in.

Peace

--------------------
Igenenex + IGM 18, 23-25, 31, 41, 66, FL 1953, bart, babs, erlich, c diff. Dox 10/10,11/10-5/11 Mino, Buluoke,plaq (2/10) zith (3/11-5/11), Paragone, Flagyl, Ivermectin, Paromomycin, Ceftin, Nystatin(4/11) mepron (4/11-)BW A-L , A-Bart, A-Bab.

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Keebler
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-
http://health.groups.yahoo.com/group/nebraskalyme/

Nebraska Online Lyme Support

is a virtual meeting place and source for information and emotional support for people with Lyme and other tick-borne diseases living in Nebraska.


https://login.yahoo.com/config/login_verify2?.intl=us&.src=ygrp&.done=http%3a//health.groups.yahoo.com%2Fgroup%2FNebraskaLyme%2Fjoin&rl=1

Join this group

Members: 15

Activity within 7 days: 7 New Messages

Not a record breaking number, but at least there are others in your state.
-

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Larae30
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I am taking the natural calm magnesium and was doing the individiual packets, just one/day. Yesterday I got a container of it, so will follow the instructions on there. I am taking omega 3-6-9, just 1 pill/day. I think I'm also going to start taking vit D.

I have never been a fan of taking any pills and now I feel like I'm taking handfuls/day, I don't like it.

I had a better night last night. I got a haircut and felt pretty good. Now today, I am not as good. It's crazy how up and down it is.

I don't think I can avoid any of the graduation activities, as I have to do them to graduate and have already registered for everything and my family would be disappointed to be flying in etc... They try to understand, but I know they don't really; I mean it is hard to really understand unless you've gone through it.

Today it's like my eyes/brain are off. I have been sleeping a lot too. I am glad that at least I have this time off to relax and sleep, but I won't be able to do that once I start work. I really hope I feel better by then.

Thanks for everyone's support!

--------------------
Treating lyme, bart and babs

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Keebler
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One serving of Natural Calm is just over 300 mg. That's a tiny dose, really, in light of the therapeutic doses that we need.

It should be taken at least 3 x day. Once a day is not enough as it does not last all that long in your body. You should notice a difference with several doses, spread out.

When you can be around the house for a little while, you slowly increase to 6 times a day (or a 300-500 mg dose 3 x a day). Slowly move up to bowel tolerance and then back down a bit.
-

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glm1111
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Hi larae,

So very sorry you have to endure all of this, and at a time when you should be celebrating.

Just to add to all of Keeblers and others great info for you, I would like to say that you don't have to be at the mercy of the doctors. Getting the proper dx is important as well as the initial therapy.

I went to several LLMDs and was happy I did so that I could find out why I was so sick. I am sure in the beginning I needed abx, but as time went on, I realized I wasn't getting well.

After much research and info that I got from lymenet, I decided to take another approach. There can be a parasitic/worm co-infection that isn't always addressed.

There is a well known LLMD that believes antiparasitics should be used as well as antibacterials and antifungals.

To make a long story short, I decided to do antiparasitic herbs along with digestive enzymes and the salt/c protocol. This really turned the corner for me and saved my life.

You can get information about salt/c at lymestrategies. There is also ozone therapy as well as rife and other alternatives to look into for treating Lyme.

In other words you can impower yourself and not feel so helpless and scared, that is why I gave you a view on other alternatives. You can get better, and I encourage you to work towards doing that.

I hope this info helps and that you have a better tomorrow.

Congrats on your degree!!

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Larae30
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Is it safe to take magnesium with doxy?

--------------------
Treating lyme, bart and babs

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Colorado gardener
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Larae, I am sorry you have Lyme, especially at this critical time.

My experience has been that it is best not to tell people about your lyme. People hearing of lyme for the first time never understand this disease. It is too complicated and unlike other infections.

I have had people I thought were friends, decide that I must be nuts, not sick. I have had doctors tell me I was crazy. ( Infectious disease specialists know so much about crazy)

Don't tell your coworkers, once told it can never be hidden again and these people will be in your field your whole life.

Don't stress yourself thinking of all the things you 'ought' to do. The best advice my wonderful doctor ever gave me was "be kind to yourself" .Fighting Lyme is hard work for your body and your mind. you need to do what you are able to do and then let the rest go.

I know you have gotten a lot of good advice above but my perspective on adding drugs for the celebration is different. Adding new medications is always a little risky because sometimes there are unexpected interactions,adverse reactions and some do not do what you expect them to do. It might not be the best time to experiment.

Try to get plenty of sleep before big days, and don't be surprised if the next day is something of a loss.

Congratulations on your graduation, it is a major accomplishment! You will get better. Good luck.

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In19944
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I take Natural Calm Magnesium w/ Doxy. No Issues
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Keebler
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You can take magnesium and doxy on the same treatment plan but

separate each by a couple hours as the magnesium can prevent the doxy from being well absorbed if taken at the same time.

The same goes for separating doxy from calcium supplements and calcium-rich foods, too.
-

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Larae30
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I took a Xanax yesterday for the first time and I think it definately helped and will be helpful during my festivities. It is going to be a hard 5-6 days. I started feeling more myself yesterday and I did some Christmas shopping and went out to eat with my boyfriend. It was nice to feel more like myself for once.

--------------------
Treating lyme, bart and babs

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Keebler
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That's great to hear, Larae.

Hope the next few weeks hold some nice "beauties" for you, all the way around.

~~~~~~~~~~~~~~~~~~~~~

"Nature brings to every time and season some beauties of its own."

(Charles Dickens)
-

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Larae30
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I can feel my anxiety going up now for all of the events coming up! I got a pillbox organizer and so it's nice having that all ready to go for the next month. Never thought I'd have to do that until I was older...

One more day before the festivities. I am still slowly feeling more like myself I feel like, so I hope that keeps up.

--------------------
Treating lyme, bart and babs

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twicebitten
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so sorry you have to join this "club" now.

I know how you feel, I never thought I'd have a walker at 38, but it happened.

Good news, is that I no longer need it..it can get better, don't give up hope. Stress makes any illness worse.

--------------------
One day at a time

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Larae30
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posted 12-14-2011 02:19 PM
So I went and got copies of all of my results today so I can take them to my LLMD appt. later this month. I was wondring if you all may have some insight into some of the results.

I tested positive in what I think was ELISA, I tested positive also on the WB and it says IgM positive, IgG negative and then for the IgM it says bands present: 41, 23 kDa. What does this mean? Is this helpful at all? I am wondering if the LLMD will want to do more testing or this will give sufficient info?

Something I thought was interesting is that my platelets nosedived between August (when my symptoms started) and late November, going from 294 to 121. Is this typical in lyme?

I know for sure I need to get tested for coinfections also.

--------------------
Treating lyme, bart and babs

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In19944
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I can only speak to the ELISA and that if you test pos on that. That's almost a sure bet, Lyme is present. And yes very common for platelet drop...and fixable.
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Larae30
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What should I be doing to increase platelets? So far I have been trying to incorporate more iron-rich foods into my diet; I am not a big meat eater though.

--------------------
Treating lyme, bart and babs

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Keebler
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The herb, Stinging Nettle brought up my iron levels like magic. It also helps decrease the effects of the cytokine storm from lyme and from herx.

But, this could be a sign of babesia, too. Be sure your LLMD has all your labs at your first appointment.
-

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sbh93
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For your graduation, buy some earplugs. Also wear sunglasses when you're not in the limelight. Those two things will help you with the sensory overload. You'll be fine. Congratulations!

--------------------
------------
It took 20 years to find out I'm not crazy.
New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco.
I am not a doctor and happily offer only my own opinions.

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Larae30
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I got through all of my graduation festivities fine! I felt really good for one day of it and okay for the other two. I also got engaged today [Smile] Ready to relax after all of this excitement. I guess the doxy really is helping me to feel more like myself each day.

--------------------
Treating lyme, bart and babs

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Keebler
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Well, Larae,

Congratulations on obtaining your degree, in full regalia, pomp and circumstance

and

Best Wishes to you & your fiance for a wonderful future full of love and vibrancy.
-

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Larae30
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I am not sure how I got though all of the graduation and family festivities...adrenaline? I even graduated with honors somehow [Smile]

I have my LLMD appt. next week in Chicago, I am pretty nervous about it; I want to make sure I get all my q's answered and that I can get on the right path to feeling back to myself. It has been 4 months now not feeling myself, which I know is nothing compared to many of you.

Looking forward to some relaxation before the holiday.

--------------------
Treating lyme, bart and babs

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Larae30
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p.s. my fiance's dad went and talked to a friend who is a neurologist and he said I should go to the main medical center in NE's ID dr. I tried to explain a little about LLMDs and the controversy, but I don't think most people get it. I think he is doubting our whole trip to Chicago to visit the LLMD and feels leery about it.

Any advice on how to deal with family members like this? Have them watch 'Under Our Skin'? Send them the ILADS site?

--------------------
Treating lyme, bart and babs

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Keebler
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Here's the best stance I've found:

It's simply not up for discussion.

You can share a few links with them but do not open yourself for their judgements or criticisms.

I would not share all that you are thinking about this. Don't share doubts or sadness. If they hear your doubts, they will think you don't have the ability to think for yourself.

Now, you can say you'd sure like to be feeling better but, really, do not make them a sounding board -

UNLESS and UNTIL - they see

"Under Our Skin" and

read the book "Cure Unknown"

Go to ILADS - www.ilads.org

and this great site: www.lymedisease.com

then, if what you hear from them is understanding and a willingness

to "meet you where you are" - then you may be able to share with them thoughts and feelings.

Be very careful not to say anything that would construe you as a victim in this. Family members HATE that nearly as much as doctors.

A stance of "this is just how it is for now" and your actions being proactive to learn and take care of yourself will go a long way to ensuring your sanity.

You might practice a few key phrases that will roll off your tongue if you are whacked upside the head by comments that may be off base.

It's a very delicate dance with anyone in your circle of friends or family (or coworkers). You don't want to come off cold as ice, snobby, etc.

You want to be able to acknowledge their concern for you and maybe even tell them what will be helpful in terms of conversation about this (even if it's not much conversation).

Mostly, in your daily spiritual practice, center and just communicate with your heart. That helps you be able to manage remarks during the day.

If blindsided by a comment, STOP. BREATHE. CENTER. Ask your brain & heart to help you with the most concise reply that will honor you & those with whom you talk.

Ommmmm.

=============================

comments I find useful:

* This is very complex (best not to say complicated as that word can rub off on the way they think of YOU)

* There's much more to learn about all this

* It's really hard for me to put in words but there is a wealth of great information if you'd like to see some of it, . . .

* I appreciate your thoughts. That's what I wondered at first, too. [Author, Doctor]'s information really helped shine some light on that.

* I'd rather not talk about health stuff right now, I'd love to hear more about . . . .

* Energy allotment for now is running low . . . . . I need to go . . .

* I need to rest now . . . .

* That sounds great, however, it's a bit too much for me right now . . .

* I really appreciate your wanting to learn more. It's so very important for everyone to know all about this, really.
-

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Larae30
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Thanks Keebler, last night I had to duck out of my family Christmas gathering early because I was just so worn out and needed to get home to lay down. I will mention 'Under Our Skin' first to his parents I think. Tim and I are going to watch it tonight on Netflix.

--------------------
Treating lyme, bart and babs

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linky123
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Hi Larae,

I wasn't able to read the entire thread, just skimmed it. I apologize in advance if I am repeating anything.

Please be careful about taking benzodiazepines for anxiety etc.(Klonopin, Valium, Xanax, Librium, Ativan...) there are others; you can google.

They are very addictive, and the average md knows how to prescribe them, but are clueless about getting you off of them.

I do not judge anyone for taking them. There are a lot of cases where people need them.

I have been on Klonopin for nine years. The md told me how 'safe' it was. Not true in my case.

When I found out how addictive they are, I decided I didn't want to be that dependent on anything, so have been tapering off since Aug.

I hope to be off in about two more months. I had to take it very slowly to avoid side effects, many can be severe.

Not wanting to step on any toes, just wanted to share my experience so you would know about the possibilities.

There are others on lymenet who have been through the taper. It is rougher on some than others. I got off to a very rough start, but am doing better now, going slow.

Whatever you decide, take care and God bless.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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Larae30
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Yeah, I def. do not want to get addicted. I was put on SSRIs years ago and had the worst withdrawal symptoms ever, so I will NEVER go back on an SSRI. I have been only doing a half pill of xanax when I feel like my anxiety is almost on the brink of panic attack.

I have been taking magnesium, omega oils, etc...

I feel like I have been having more neuro symptoms lately, like little tremors.

I am on almost week 3 of doxy. I can't believe that that is what regular dr's give for FULL treatment and I still don't feel myself.

My LLMD appt is in a little over a week! I've been checking the weather forecasts, but I prob should lay off doing that until the weekend so I dont worry so much!

Thanks again everyone for your advice and support.

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Treating lyme, bart and babs

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Larae30
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I've been having a hard time the past few days, getting down on myself and doing the 'why me' pity party type thing.

I just feel so hopeless and would do anything to get back to my real self.

I feel like I am alienating my family and friends too because they just don't get it.

How am I going to take boards and start my job when I can barely take a shower some days? I guess I just need to try to relax until my LLMD appt next week.

Not sure how I'm going to get through Christmas with Tim's family either. I just don't have energy and have been more shaky this week, it is scary.

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Treating lyme, bart and babs

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Keebler
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You don't have to go anywhere if you are not feeling up to it. Your first responsibility is to your body.

As for the "why me" "pity party" stuff - if you can shift that around to recognizing the shock and grief about this, it can help to take the focus off the "poor me" to the "dear, me - I will do what I need to take care of myself"

and that includes emotional nuturing. That includes sadness, confusion, etc. It's just part of the deal. Just acknowledge all that you feel and honor your spirit.

You will find out more next week. You can't possible know all you need to know right now but you have made steps to figure this out. One hour at a time.

This is probably the toughest time of year - on everyone, really. All of our interpersonal transactional, interpersonal "I'm Okay; You're Okay" skills just fly away with Ruldolf, it seems.

First responsibility you have is to yourself. Listen. Nourish. Nurture. Love.

Speak, act, feel from your heart. Keep your center.
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In19944
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I feel bad. I know EXACTLY how you feel. I felt denial for a couple weeks, then since then it's been Why Me? It's a very natural thought. I am still feeling it.

I thought after my + diagnosis, that the drs. and my family/friends were going to rally around me and we were going to fight this thing tooth & nail with all resources possible.

Instead, I got the almost opposite.....looks of confusion, people behaving the same around me as they did before I was sick...expecting the same from me. My family says "wow your a real blast to be around"...with sarcasm of course. If they only knew, if the docs only knew...

Stay the course, make the most logical decisions you can and get input from your partner. And make sure that you aren't doing any further harm to your temporarily fragile body/mind.

It's possible you will feel better soon. I take comfort in the fact that I am following DR B's guidelines and that gets rid of the "why me's" sometimes.

I am already starting to feel like I'm punching back a few months into treatment.

BTW..that tremorry(?) feeling is not permanent. I know exactly what you are talking about and mine went away. BOL:)

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Larae30
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Yeah, I think I am progressing along the stages of grief (DABDA)...

I am thankful today that I took the initiative to find this board and listen to the advice of others and make an appointment with a LLMD.

I am thankful that all of my tests have been positive for lyme, so I am not having to fight as hard for treatment and going the rest of my life with no answers.

I am thankful for Tim and how great he has been. If it weren't for him, I probably would have to move in with family or something and that sounds horrible to me (I am not the closest with my family).

So even though my mind is preoccupied mostly with negative thoughts, I am trying today to think of the positives.

I'm pretty slow and out of it again today. Hope I can make it through the busy Christmas weekend. Then the Chicago LLMD trip next week and so far it looks like the weather will cooperate!

I am going for a massage soon, hopefully that will help relieve some stress also.

Wishing you all the best over this holiday season. Everyone should make a list of things they are thankful for [Smile]

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Treating lyme, bart and babs

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Larae30
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Tim and I made it to Chicago and tomorrow is my first LLMD appt. Hope I can get some insight and on to healing.

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Treating lyme, bart and babs

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Keebler
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Good luck, Larae. I hope all goes well and that you can also enjoy some of the sights of the season.
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twicebitten
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Best of luck to you, hope your visit goes well and you get some answers. hang in there!

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One day at a time

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