posted
I was diagnosed in March after having an unrelenting headache (NDPH) and other minor symptoms for 6 years. I had a positive Igenex test (which was CDC negative) and a homeopathic doctor who did not know much about Lyme put me on antibiotics.
I spent months on a waiting list for an LLMD and after doing lots of tests for him and seeing him he is convinced that oral antibiotics won't work after being on them for 7 months.
He wants me to do Cefepime injections (if I don't have coinfections) or IV antibiotics. He does not believe in herbal therapy. I don't know what to do.
I had always hoped to do a combo of herbal things and antibiotics, but I have no idea where to start with herbs. I don't want to start on an IV if it's not necessary, but I'm desperate for some relief from the pain.
Can IV alone be effective? How do other people manage herbs/supplements? Do you see someone who guides you or do you do it on your own?
Any suggestions would be appreciated! I'm desperate!
Posts: 9 | From Michigan | Registered: Apr 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you have not already done so, I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Compare your 7 months of oral antibiotic treatment to what Burrascano says is required.
If your treatment lines up with Burrascano, and if you got no better on the orals, then it seems reasonable to go to injections or IV.
However, if your treatment did NOT line up with Burrascano, then you need to find a doc who will treat with the high-dose combinations of antibiotics that Burrascano says are required in order to beat this disease.
See page 18 and following for the dosages required to treat lyme. The various meds are listed there in alphabetical order. Be sure you were on the proper dosages and proper meds.
It takes 2-3 antibiotics taken simultaneously to kill lyme since it can change forms to evade any one antibiotic.
You can buy the supplements that Burrascano says are essential and then add the others that are for your specific symptoms.
Regarding coinfections, Burrascano says that 100% of those who have had lyme for at least a year also have coinfections.
Your doc should have tested you for coinfections at your first appointment. You should have all of these test results.
In addition, since the tests are so lousy, your doc should have evaluated you for symptoms of each of the coinfections.
Read the sections in Burrascano that describe each coinfection and determine whether or not your symptoms point to any coinfections.
Burrascano recommends Bicillin injections for those who make no progress on oral antibiotics. It is much cheaper than IV and almost as effective as IV. You can read that in Burrascano.
People do very well on the Bicillin.
Even if you go on IV, you need to be on more than one antibiotic as it says in Burrascano. See "Combination Therapy" section. So, you would likely be on orals while on IV.
Also, you will be on orals for coinfections. As you will read, the meds for coinfections are different from the meds for lyme.
If you contact the Michigan Lyme Disease Assn or Michigan support groups, perhaps they can give you the name of a lyme doc who is better than the one you are seeing. You could get a second opinion there or even switch doctors if need be. See Support Groups on the left side of this page to find those in your state.
I got rid of lyme (and babesiosis and bartonella) by going to a doctor who followed the Burrascano Guidelines. He tested me for coinfections through Igenex. He did at least 2 different tests for each coinfection. This is how my coinfections were discovered. This was all done at the first appointment.
Once you learn what good lyme treatment looks like by reading Burrascano, then you can compare any lyme treatment you receive and know whether it is good, bad or just mediocre.
I always recommend that everyone get to the very best lyme doctor they can possibly afford. That gives you the best chance to get rid of these diseases.
The best lyme doctor is the one with the most expertise in these diseases. Many come east for good care. Lyme docs here often will do telephone appointments with their out of state patients. This way, you only have to travel to see the doc once every 6 months.
If you want my recommendation for a top lyme doctor here in the east, let me know and I will send you a name.
With this disease, there is no substitute for an educated patient. You can't just put yourself in the hands of a doctor and wait for the magic to happen. So, it is good that you are thinking about the doctor's suggestions for future treatment.
First, determine whether or not you have received good treatment for the last 7 months. Then, you will know what your next step is. Once you have a knowledge of what good treatment looks like, then you can evaluate any doctor you go to including your current doc.
When switching doctors, you always want to be sure you are moving up the totem pole of lyme expertise.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Why don't you try Buhner's herbs on your own?
I did that, many people did. Read the books.
Dr. K also thinks that if antibiotics are not working for the first months, chances that you won't get well with them are high.
On top, they WILL deplete your body from beneficial bacteria, that is one of the main guns our immune system uses.
Look for other LLMD too, or a naturopath with experience.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
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posted
Have you been tested for Babesia? Headache would seem to point to that. I would try an intense regimen of antimalarials before I.V.
Just my opinion! All the best. I had a headache last night and they are so awful. I fell sorry for you!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
He said he would test me for coinfections and I got results for Ehrlichia and Anaplasma, both were negative (according to the lab he used).
It looks like he did not test for Babesia and Bartonella but I will ask him to. I told him that I was pretty sure that more than 50% of people had coinfections but he said that wasn't the case.
I'd be interested in seeing a more neuropathic doctor but I don't know how to find one. And of the LLMDs I called to find this current doctor, 4 months was the shortest wait.
Posts: 9 | From Michigan | Registered: Apr 2017
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posted
He has tested me for heavy metals and my lead and cadmium were high. He wants to look into it more, but if those are indeed a problem he wants me to do chelation, which I'm not entirely comfortable with.
Posts: 9 | From Michigan | Registered: Apr 2017
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posted
I'm sorry you are suffering-headaches were my worst symptom. Just an FYI-I never tested positive for co-infections.
We treated lyme orally for about 6 months then my co-infection symptoms came out loud and clear. I only treated with high dose oral antibiotics, as TF suggested above. And combos of these. I then added in some Byron White herbs.
Life is much better for me now!!
Posts: 88 | From new england | Registered: Oct 2016
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TF
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posted
Babesia and bartonella are the 2 most common coinfections.
In the east, every person with lyme also has babesiosis and bartonella.
So, it is not a good sign that your doc did NOT test you for these 2.
I also would not be comfortable with chelation therapy.
It is seeming like you and this doctor are not a very good fit.
It is typical to have to wait 4 months or even more to see a lyme specialist. Because of this, don't leave one doctor until you have had your first appointment with a new lyme doctor. After the first appointment with the new doc, then decide which doc you want to continue with and cancel any future appointments with the other doctor. Don't go without a lyme doctor at any time.
Also, research the new doctor extensively so that you are not waiting for nothing, so to speak. Find out from others and from support groups how the doctor treats.
This includes whether he really believes that coinfections are common, whether he tests for ALL coinfections at the first appointment, what lab he uses for these tests (Igenex is generally considered the best one), whether he follows the Burrascano protocol meaning high doses of antibiotics and giving 2-3 antibiotics simultaneously for lyme disease treatment.
Rarely does a person make a good choice the first lyme doctor they pick. There is a real learning curve. So, do a lot of researching before picking another doctor. The Internet will often turn up patient reports on lyme doctors. These can be very helpful. Talking to other lyme patients is really essential so that you know what you are getting when you sign up to wait for a new doctor.
You can post in Seeking a Doctor forum and ask about your current doctor or any new doc you are considering. Just be sure not to use the doctor's full name. Use first letter of last name and state only.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Brussels
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I agree with TF.
Do you guys ALL have positive tests for babesia and bart?
I thought these tests were not really reliable and that most people treat these coinfections anyway, as they are very common.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I Agree with TF too.... You will do well if you listen to her.
Yes Brussels... I tested positive, but my Dr. said babesia is hard to detect unlike bartonella which supposedly fairly jumps off the slides... I tested negative for babesia the first time and then after some lyme treatment tested positive. And the longer I treated lyme, the more Babesia symptoms came to surface... such as air hunger and night sweats.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
I felt much better after chelating lead. It was a big problem for me. I used Detoxamin suppositories to detox it. My LLMD said it doesn't work very well on mercury, but it does on lead.
I agree with what was said about coinfections. My doctor diagnosed my coinfections based on symptoms and response to medications. I did not test positive to babesia or bartonella but it was clear I had both.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I didn't test postive for babs or bart. My LLMD clinically diagnosed me with bart. I do not have main babs symptoms and antimalarials didn't do anything for me.
So, It's Bb and bart for me.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Brussels
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Member # 13480
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I never tested for babs or bart.
I had all babesia symptoms, like in a book, but normal docs did not want to believe me.
Then I took Riamet, an anti malarial, and had THE SWEAT and THE HEADACHE of my life. It was EXTREME.
But in 3 days, I had no more babesiosis symptoms. 100% gone. That was how I knew I had either babesia OR malaria for sure, and that doctors were wrong.
Bartonella symptoms overlap with Babesia, so I did not know I had it.
I think it was energy testing that showed me bart first, or a bart treatment made finally some bart scratches appear all over my body (and that also convinced me!!)
I would just treat babs and bart, with a positive or a negative exam. If you get better, that's the payment!!!
I would lose less time in finding out than with treating directly. If you use herbs, you can't do much damage (in my opinion).
Posts: 6199 | From Brussels | Registered: Oct 2007
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