I was treated late for Lyme and have been on antibiotics long term. I started cefuroxime (ceftin) for it last October, but symptoms started early spring, I think April (though I think I had it the year before, too.)
When I finally found my doctor now (who takes insurance) my blood test showed 3 markers but one of them was under the 60% necessary for the official diagnosis AMA requires, so I was told I don’t have it.
I had numerous symptoms but some won’t go away now, including pain in my spine and the knuckles on one of my hands. Other joints have had sporadic pain - it comes and goes, and has mostly cleared up by now, but my back and right hand won't get completely better.
I have also had blepharitis which was getting better but is not gone. My thinking has not been working as before also, I still have to concentrate very hard to think of words I want to use, sometimes, and constantly forget what I am saying if there is any kind of interruption.
I am much better than before, but still not better. I had a 2 week period of no symptoms, so the doctor stopped my antibiotics (ceftin)and then the hand, back and eye symptoms came back.
I'm wondering if anyone has similar experiences, and can tell me what they've done, or what their doctors have said. Is this “post treatment” condition that won’t get better so I might as well stop the medicine, or does anyone have experience of it working to just stay on the antibiotics for longer?
I don't like being on antibiotics, killing all my good bacteria also! Is there a book, or research, or other info out there that anyone knows of that I should read and show my doc?
Posted by CherylSue (Member # 13077) on :
Sounds like you still have Lyme and need to see an LLMD.
Read Dr. H's book WHY CAN'T I GET BBTTER? It was available from my library or you can purchase it. Also read Dr. B's guidelines on this site.
Cefuroxime is great for Lyme. The drug crosses the blood brain barrier, so it is good for neuro issues. It may take several months on antibiotics to see remission, but you will be feeling better along the way.
It doesn't appear that you have undergone a good treatment protocol. Lyme is nothing to mess with. It can go chronic, so the sooner it is fully treated, the better you will be in the long run.
Good luck.
Posted by RainbowHope (Member # 42858) on :
Like CherylSue, I think you need to see an LLMD/LLND.
Chronic Lyme requires long term treatment, and it doesn't sound like you're done treatment yet based on persistent symptoms.
I hope you're able to get some good help and a good protocol!
Posted by cheryljoy (Member # 44274) on :
Thanks, CherylSue and RainbowHope,
I am going to a Dr. who is an LLMD.
He's had me on the Cefuroxime since I saw him at the end of October, so I've been on it for 9 months, though I stopped it for a couple weeks two times.
Posted by TNT (Member # 42349) on :
Mono-therapy will never get rid of Lyme or your symptoms!!!!!!!
The only time I EVER heard of someone being successful with mono-therapy was Dr. Burrascano himself (AFTER he had treated his co-infections). He pulsed Ceftin until his symptoms completely went away. You can read about this in the book Beating Lyme (by Constance Bean), or, Cure Unknown (by Pamela Weintraub).... I can't remember which book right at the moment.
But, it really doesn't sound like YOUR doc is an LLMD.... or at least not a good one.
I am not aware of any good LLMDs that take insurance.
Please get to an LLMD that you KNOW cures people of CHRONIC Lyme disease. You may have to post in Lymenet's "Seeking a doctor" forum for a doctor such as this.
Also, please read Dr. Burrascano's treatment guidelines posted here on this forum.
Posted by Keebler (Member # 12673) on :
- You ask: "Is this “post treatment” condition?"
No, unfortunately, it's chronic lyme and treatment takes a long time and it needs to be combination / rotation, etc.
There is no such thing as "this “post treatment" just treatment that has not yet worked, the wrong treatment, or overlooking other tick borne or other chronic stealth infections that may be involved, etc. Or other aspects covered in the book suggested above by Dr. H.
It may take several years but many have gotten better.
Some say about the 3-4 year mark; another here says that after seeing lesser qualified doctors for a couple years, finally getting with one who was more aggressive / and more inclusive with support methods, within a year, she was much better.
Other tick borne infections should be considered, too, and they would need different Rx.
Ditto to TNT's note: "Mono-therapy will never get rid of Lyme or your symptoms! . . . Please get to an LLMD"
You say that you " don't like being on antibiotics, killing all my good bacteria" -- well, lyme is one of the most neuro-toxic infections know to mankind. If there is not adequate treatment, you are, in effect "taking" a damaging neuro-toxin by not treating adequately.
Lyme is so much worse than any antibiotic. Good medicine is what works. And, with lyme, it's never just one thing.
There are specific factors with lyme treatment to help protect against some of the admittedly harsh effects of antibiotics so they can do the good they do while we take key supplements to help that work out better.
As for the gut: probiotics, certain anti-fungal Rx, OTC, or supplements (especially Olive Leaf Extract) can set the balance strait. And our nutrient intake, avoiding sugars, etc. -
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by Keebler (Member # 12673) on :
- As you say you are not fond of antibiotics, it may help to realize that even many LL ND use them as part of the plan. To explore other options, though, detail in this set.
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; 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 from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
RIFE MACHINE links here, too. -
Posted by Keebler (Member # 12673) on :
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - released Nov. 2013 -
Posted by shoeless joe (Member # 45835) on :
you have to feel it out
there comes a point you have to stop and see what happens.
Give it a little time,you will know if you go downhill
Your body will usually give you the clues.
Theres a price to pay for staying on atbx too
Its to bad there isn't a test to know if lyme is gone.
I decided to stop after years of atbx and Im glad I did.
Posted by Keebler (Member # 12673) on :
- I've taken the liberty of reposting a reply from TF to a poster today with a similar question. I wanted to be sure you have this and she may not come around to this thread.
TF has posted something similar to this often. She knows full well how important this is (and she is well today).
TF posted elsewhere:
If you can, try to read the Burrascano Lyme Treatment Guidelines found here:
Look at pages 9-10 which is a list of symptoms. Mark all that you have. This is the most important thing you can take to your lyme doctor appointment besides your positive lyme test.
Read as much of this document as you can. Read a little at a time. It is not an easy read because it was written by the world's top lyme doctor to teach other doctors about lyme disease and the other diseases the ticks give us.
An educated lyme patient has a much better chance of getting cured. If you study this document, you will understand more of what the lyme doctor is talking about, and you will be able to evaluate the treatment you are given.
Don't just sit back and wait for the magic to happen. Those who do that often don't get better. Get involved in your treatment. Learn all you can about the things the patient must do to have a good outcome from treatment.
Do all the things Burrascano says to do and don't do the things he says not to do. This is all very important.
I don't know if you know it or not but there is no standard treatment for lyme disease. A lyme specialist is free to do what he wants. So, some use only herbs, some give very low doses of antibiotics for very long times (5 or more years, etc.), some follow one doctor's protocol or another doctor's protocol, some "do their own thing" (whatever they have discovered that seems to help people) and some follow Burrascano.
For that reason, it pays to understand what protocol a lyme doctor believes in before going to him. This way, you know how your lyme will be treated.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do.
He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
(end TF's post) -
Posted by Keebler (Member # 12673) on :
- Clarification on "exercise as the patient is able to do it."
That is to be non-aerobic. Slow, steady. More detail in his self care section of the above link. I just didn't want you overextending yourself. -
Posted by cheryljoy (Member # 44274) on :
Thanks so much to you all who responded. I've got a lot of reading and research to do.
I've requested that first book (per CherylSue)from the library, and now will look for more.
Hopefully I'll be able to do what I need to with a Dr. that takes insurance because I don't have enough to pay the ones that don't take it.
I'll keep looking around here, on this forum, also!
Posted by ukcarry (Member # 18147) on :
I agree with other posters, Cheryljoy, that your symptoms show the need for further treatment and that you should see an LLMD who has more to offer than one antibiotic.
Whilst you are waiting and also possibly in addition to antibiotics, there are some herbs that you could take that might be of benefit and, if money is short, you could buy some of them as the dried herb and make a Lyme 'tea'. Some people do this with some of the herbs recommended by Stephen Buhner, master herbalist, eg cats claw, Japanese knotweed. Alternatively, you could try Samento (which is also cats claw) and Banderol or Cumanda from the Cowden protocol.
It does seem that you would benefit from doing some reading and more researching and I know that it is hard to make decisions as to how to proceed when money is also an issue. Presumably you are taking sufficient probiotics and some supportive supplements such as the B vitamins and magnesium? Good luck, Carry
Posted by cheryljoy (Member # 44274) on :
Yes, I'm taking probiotics and eating things like yogurt and kimchi, taking B-2 and magnesium (though those last 2 to reduce migraines.) I'll look for a good Lyme tea or make it up myself. Hard to find the time to do all of it because of homeschooling my 10 year old daughter, but I will!
Posted by ukcarry (Member # 18147) on :
Cheryljoy, here is an example of a Lyme tea recipe....you can source the herbs quite easily and make in bulk.
Because you have only been offered one antibiotic, I am not suggesting this as an alternative to a rotated antibiotic protocol, but as an addition in the short term or alonside an antibiotic protocol that might suit your budget.
That's a lot of stress, your trying to homeschool on top of being ill yourself, so I do hope you can find some time to relax. Stress is not a good accompaniment to any illness and is particularly counterproductive with Lyme. I send my best wishes for your treatment.
Posted by cheryljoy (Member # 44274) on :
Thank you ukcarry, do you have another link to it? this one isn't working. I'll do a google search to see if I find another.
Posted by ukcarry (Member # 18147) on :
This one is very similar. Most of the Lyme teas I have seen online use more or less the same herbs. Someone actually sells it, but that would probably defeat the object of keeping the price down!
Posted by Keebler (Member # 12673) on :
- Buhner's books are essential to anyone exploring herbal approaches. -
Posted by Brussels (Member # 13480) on :
I'm someone that doesn't agree with most previous posts, in the sense that I do think that abx long term can cause more harm than progress.
I would never go for multiple abx, nor even single abx anymore, LONG TERM just because I had a previous chronic disease BEFORE lyme came: chronic candida.
And I swear to you all: my lyme went dormant after 4 years of MASSIVE natural, herbal, homeopathic, electric, photonic treatments, while my chronic candida lasted 30 years!!
Candida resisted all types of treatment. It kept going away, but always returned. While lyme went away, and DIDN'T return (I mean, the only time it returned, it lasted a couple of days with active symptoms).
Candida relapses took me MONTHS to treat and get them under control. Most part of the year I was fighting candida or fungal infections.
Only recently (last 5 months) I got it fully dormant. So in NO WAY, I would have TRADED having lyme dormant by INCREASING candida.
It is NOT TRUE that taking probiotics during abx will prevent candida for good. Maybe, for a while, you can get it under control with probiotics, but in my case, massive doses of probiotics even WITHOUT ABX helped only minimally.
Candida can also be mortal (less than lyme though, I agree). It is intimately linked to cancer patients (most are covered with candida infections).
And candida and borrelia walk hand in hand: they profit from the same defects from your immune system.
Candida is EVEN MORE STUBBORN than lyme. In my case, lyme was much easier to fight than candida.
You can check this forum and others: people get rid of lyme, but they have a very hard time eliminating candida.
Symptoms of candida are VERY SIMILAR to lyme. Same as mold symptoms. It's also immunosuppressant, also a reason for having CFS, arthritis, brain fog, multiple infections.
So, I absolutely understand you not wanting to go further with abx.
Another point: I had recently a bad kidney - bladder infection. No matter what I took, the infection remained (low gear, but it remained active).
What killed it was simply different binders. I stopped ALL KILLERS, and only added massive amount of binders, and in about 2 weeks, it got dormant.
I had that problem before: killers will NOT SOLVE some infections, no matter what massive amount you take, just because toxins like HEAVY METALS will shut your immune system down, your body cannot recognize critters.
Plus, toxins block access to most sickened parts of your body: they get no proper nutrition, immune cells do not function there. so you can guess: abx will not come there, it has no access, no proper circulation to bring the abx there. Or killers.
Clean the area, you may have a surprise!
I just recently heard Flanagan saying: 'there is no cure for diseases: give the body back what it needs, and it heals on its own'. There's deep truth in that.
of course, when an infection is LITERALLY consuming your body at high speed, you have no choice than using killers in massive amounts. But that, in my opinion, is JUST like putting a bandage to stop a leaking tap.
It will help minimally, but won't solve the chronicity.
Get another tick bite, despite massive loads of abx or killers you took before, your hell starts again.
The only way out, in my opinion, is to build the body again. Body's ability to take in nutrition, water in the cells, and body's ability to detox.
then the next tick bite, you'll have more chance to get out without much trouble.