I got a refill this morning and took the first pill...

But how can I know? This refill gets me only another week but I"m afraid of going off again and having to battle the exhaustion, crankiness and mental fuzziness again which I"m afraid has started already.

What's the sign that says "this bacteria is killed off, body is in healing phase"? and I can stop the medicine?

I see this is your first post and do not know if you have been reading a long time or not. I am sure someone will come along with a good answer, because I do not have a good answer for you.

Are you seeing a LLMD? (lyme literate doc)

Just hang in there, and come here often.

Sorry I was not much help, I am sure someone will be by soon with a good answer.

How long to treat?
Many Lyme Literate Med Drs (LLMDs) recommend that treatment be continued for 4 to 6 weeks (some now say 8) after all symptoms are gone.

Go to www.ilads.org
Click 'Articles & Presentations'
Print "Diag Hints & Treat Guidelines..."
32 pages of excellent info written by one of the best LLMDs.

About pages 16-18: Antibiotics & Treatment Categories - recommendations for dose & length of treatment.

What antibiotic (abx) are you taking?
How much per day?

Since your dr thought that 4 weeks of antibiotics was excessive, then I recommend you find a LLMD.
The earlier the treatment, the better the results, but ONLY if treatment is adequate.

Go to Seeking a Dr here on LymeNet & put your location in the title.
We don't give dr's names without permission, so info will be e-mailed to you. Some travel may be necessary, but it is worth it.
Also, it may take a while to see the LLMD.

In the meantime, IF you think your dr would be willing to read new info, take a copy of Dr B's "Diag Hints...Treat Guidelines" to him & see if he would be willing to follow what Dr B recommends.

Also, take a copy of "ILADS Lyme Disease Treatment Guidelines Summary" (this is not Dr B's) to your dr. It's 4 pages of facts everyone should read. www.ilads.org/guidelines_summary.htm
Note #10 begins: "There has never...been one study that proves...30 days of antibiotic treatment cures Lyme disease..."

If your dr is willing to follow these recommendations, that's great.

I think it's advisable that you be evaluated by a LLMD & then the 2 drs could work together to treat you.

The LLMD would also check you for Co-Infections, which are rather common along with Lyme disease. Symptoms are about the same, but each illness takes different meds, so you have to know what you're dealing with.

Abx is generally taken for a period of time after you have no more sysmptoms or herxing. If you've had lyme for awhile, a month isn't likely to do it. Many months or years of treatment in not uncommon.

There are several good llmds in Chester County, Pa. E-mail if you need the info. We are lucky to have several good doctors close to us.

I'm beginning to think that I do not have a LLMD and will follow your advise to get one.

"What antibiotic (abx) are you taking?
How much per day?

Since your dr thought that 4 weeks of antibiotics was excessive, then I recommend you find a LLMD. "

I"m taking Doxycyclene and now I understand that for a long time was having a herxheimer reaction. I felt absolutely terrible and couldn't figure out how I could be feeling worse after 3 weeks of antibiotics than I did in the first week.

During that time everyone - including my regular doctor and the infectious disease doctor I went to kept telling me 'oh, we caught it quickly, your're so lucky, this will go away with no problem'.

This has not gone away with no problem. I was so dizzy I almost fell down the stairs and then just stood there swaying for several minutes contemplating how much better my life would be if I could just break a leg or something...being layed up would be such a relief from having to work every day.

I"m not normally like this, I love my job...or I did until it's become so terribly painful and exhausting to drag myself through every day in a fog.

Lyme CAN * sometimes* go away quickly if caught very very early.

It does not sound at all like you are with a LLMD. Sure, your doc may know what lyme IS, but that doesnt make him or her a LLMD.

Did you post in seeking a doctor to get into see a good doc that wont pull your abx until YOUR BODY says so?

Look to see you over there!
Jodie

I keep hearing four months symptom free, which includes menstrul cycle when things like to act up. Watch the full moon too, many have lots of symptoms flares during this time. Only once in many months have I not had problems during this time.

My doc stopped giving me abx, after about 4 months and I am going down badly like a year ago. We don't have LLMD's here, but after getting better and going down again I know for me 4 months was not long enough.
Hopefully you can get an LLMD and get some better doc advice.

I was ill for about 1 year before getting dx and treatment started; been treated now for two years and I'm feeling pretty good.

See my LLMD today and expect we will soon start weaning me off abx. It's both exciting and scarey because I know the rebound rate must be high at this point.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

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Rose's 15 Facts for Newcomers
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Why You Can't Trust Medical Journals Anymore
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Drug Interactions and Other Drug Info
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American Medical Women's Association Tiscali Reference Encyclopedia
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Marnies......... Ten Points Regarding Mg and Lyme Disease

Canlyme MAG

Help with Meds

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I"m not sure, but I think the 'neurological symptom' that I mentioned was the dizzyness.

It was a funny thing, I had been on doxy for a month and finally got my vacation time. I"d been suffering so terribly at work with exhaustion and mental dullness, the vacation was a godsend.

The parents of my fiance needed help bringing their boat from CT to Washington DC (First leg on a trip to FL) so we signed on to help expecting a nice relaxing boat trip.

haha, little did I know:

Doxy/nausia+slightLymeDizzyness+huricaneIvan+5dayboattrip=v.v.unhappygirl

It took me literally 2 weeks to stop reeling and the earth to stop moving under my feet after it was over.

I was thinking that I just wasn't a boat person, but since being on this board I"ve realized that some part of the problem was those bastard bugs.

Point being, the dizziness I think was exaserbated by 5 days on a boat (2 on the ocean)fighting hurricane weather and may have had it's roots in Lymes but hopefully wasn't totally Lyme induced.

I don't know though, since I"ve had this relapse I"m feeling as someone else described as low level drunk...1 beer drunk.

You may know this already . . .

If you wind up on doxy again . . .

The boat trip may not have been the best of ideas for another reason . . .

Any of the "cycline"'s make it so you should not be out in the sun.

You've been giving great links and advise.

It sounds to melike your lyme has disseminated. At one point I felt the same way you do. Exactly! I "lived" like that for almost 10 years, with the symptoms waxing and waning, but overall, felt lousy. Doctors thought I was "stressed" or had chronic fatigue. I gave up on doctors after that, until I started having stroke-like episodes and arthritis, bells palsy, etc. I mention this because you most certainly do need to continue treatment for lyme. I'm so sorry the meds didn't get it all.

Most LLMDs will make sure you are symptom-free for at least 3 months before you go off meds. Also, I've "been there done that" when it came to trying to convince my PCP that a second course of antibiotics wouldn't kill him to prescribe it! But all I got was 10 more days and was still extremely symptomatic with neurological and cognitive problems. I was just told to go to a Rheumatologist and also a Neurologist.

Please, please don't go that route; don't let your doctor "send you up the duck chain (quack!) until you meet with a doctor that specialized in lyme disease treatment (we call em LLMDs here)

In fact, you are not in a bad location and probably will not have to travel far. Just make the call to set up an appointment now, do not wait. Some of the LLMDs cannot get you in right away - you may have to wait. So, make the call now and then while you're waiting for the appointment, you can continue researching. I'm willing to bet you'll be glad you did.

I can say this because I wasted 3 long sick months going from specialist to specialist after my diagnosis and they just wanted to give me steroids for the lyme and dismiss me. It seems pretty rare that one of these specialists are lyme-literate.

All the while my infection was getting worse and worse. Now, after 16 months on antibiotics for lyme and also bartonella, I am nearly 100% back to normal. I had like 40 symptoms on the list, was bitten 12 years ago. I am a new woman! Don't wait around like I did.

Glad you're here,

keep reading

I have learned so much here, its absolutely life changing.

A week ago I thought I was having a relapse, now I know I was just herxing. Now I"m scheduling a weeks vacation time for my inevitable October herx, so I"ll get plenty of rest during it and not endanger my network or my job operating heavy equipment while my brain is marinating in toxins.

The mental fog is gone, and while I"m still pretty wiped out, I feel 100% better.