I believe I may have Lyme as I have many Lyme-like symptoms (sensory, joint pain, muscle pain, etc.) and other competing diagnoses have been ruled out.
I've been in a chronic state now for about 15 months. I don't remember a bite but I do live in a tick-infested area and I do hike. I have tested negative for Lyme using the usual antibody test, which I understand can be very unreliable.
My question is whether it is safe/common to get started on an AB treatment for Lyme based only on the (maybe strong) suspicion that I have Lyme but without confirmed lab results. Basically, take the ABs for a while and see how I respond - if I respond, great; if not, then look for other causes. If so, what AB and what dosage would be appropriate?
From reading various posts, I'm under the impression that it is quite common to start on ABs and see how it goes. There is limited downside risk.
I am currently looking into finding an LLMD, with the help of this board.
Thanks.
Posted by Keebler (Member # 12673) on :
- I would begin with something like Allicin, a strong garlic extract - while you search for a LLMD. Where you live, you have LLMD and LL ND options.
Still, as you sort it out, allicin will cover a lot of bases and can help in various ways. There are also other herbs to consider as well.
IMO, it can be nearly impossible to determine if you are "hitting" lyme with just one basic antibiotic. Best to be clinically assessed by a LL expert.
Just taking one kind of antibiotic can also CAUSE CHRONIC lyme or push one that is already chronic even "deeper" - if not part of a fuller protocol with other antibiotics and also other categories of Rx and support supplements to address the cyst & biofilm issues.
Allicin has some capacity to address various aspects such as biofilm, and also will not cause a systemic candida infection as antibiotics can do. When starting antibiotics, there are many other things that must be done. It's rather complex and best to wait until you find a LLMD &/or LL ND, considering this has been going on for a while (whatever "it" turns out to be).
Still, also take PROBIOTICS, hours away from either antibiotics or herbal supplements. -
Posted by Keebler (Member # 12673) on :
- The cornerstone of this approach is Allicin, a very specific one, from Hepapro, that I find far better than others.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
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.
How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posted by Lymetoo (Member # 743) on :
Yes, it's quite common since Lyme IS a clinical diagnosis. You could take meds for a month or so then retest. Quite often, the second test will pick up the Lyme antibodies since you are busy creating them now.
Which test did you have? The ELISA or the Western Blot? Can you post the results here?
See especially the link on testing.
Posted by peets (Member # 41289) on :
Thanks to you all for your advice.
Regarding my testing, I had a "Lyme Disease AB screen", for which my result was <= 0.90. The lab report does not list my exact value, just that it was below this threshold. This screening result was deemed a negative, so no WB test was ever performed. The testing was performed at the Nichols Institute in San Juan Capistrano, CA.
Posted by nefferdun (Member # 20157) on :
The CD57 test is fairly cheap and when you have borellia (or protomyxzoa) it is low. That is one good indication that you need to treat.
Most LLMD's start with doxycycline because it hits borellia, ehrlichia, and to some extend bartonella and babesia. If you get more symptoms that indicates it is hitting something. It is called herxing.
Many LLMD's run a trial course of antibiotics to see how you respond. If you get better - great - it is obviously doing some good. If you get worse, it is hitting something and you are herxing. If nothing happens, it is either the wrong antibiotic or you don't have lyme.
Speaking from experience, I would not bother with herbs unless you are drug sensitive and can't tolerate chemicals. Sometimes I had to take a break from drugs and used massive amounts of herbs, but they never helped. It was the drugs that finally knocked the infections out.
Allicin is a sickening derivative of garlic. You belch it up and smell horrible. Most people can't tolerate it longer than two weeks. Many chronically ill people have CBS mutations and can't tolerate sulfur. Garlic is very high in sulfur, so it is not helpful for us.
We are dealing with the equivalent of germ warfare. You need the nuclear arsenal of drugs to knock these pathogens out. People who try to get well with herbs usually stay sick.
Keep in mind most likely you have multiple infections. Doxy is the first course of treatment but it won't be your last. Doxy makes you very sun sensitive so stay out of the sun while you are on it. It can also cause acid reflux so do not lie down one hour after taking it - and take it with food.
Posted by nefferdun (Member # 20157) on :
If you examine your symptoms and the timing of flares it will help you determine what you are infected with. Borellia has 28 day flares. Mine always coincided with the full moons.
When your joints are affected from borellia, the pain migrates from place to place and when it is in the joints, it is usually located on one side of the body. You can have all over body aching.
If it is babesia, the joint pain is usually on both sides of your body. With babesia you also have hot flashes, muscle cramping in the large muscles like the buttocks and thighs, profound fatigue, loss of concentration, headaches behind the eyes, depression, anxiety and oversleeping. You feel apathetic about life.
Bartonella causes unusual skin changes like pea size brown spots and crusty moles. Depending on which strain you have, you might have red streaks, the soles of your feet might hurt (especially in the am) or your shins might hurt. It would be both shins.
With bartonella you feel touchy, on edge with temper flares. You can also feel out of it - what we call depersonalization - not connected to the world. It causes vicious insomnia.
Protomyxzoa Rheumatica is the newest infection to be discovered and probably the worst as there is no cure. As the name implies it is connected to rheumatoid arthritis. It is like bart in that it causes insomnia but more like babesia in that is causes hot flashes, profound fatigue, muscle and joint pain, fever, depression, anxiety and nerve pain.
PR (protomyxzoa) is known to cause auto immune diseases such as Hashimoto's, MS and ALS. Some of the more unusual symptoms that help distinguish it from the other infections are nasal congestion ( you think you have developed allergies) and a hoarse voice and dry cough. These symptoms are intermittent - coming and going.
You probably do have lyme disease. I hope you can see a good LLMD. Don't rely on mainstream doctors to help you.
Posted by Lymetoo (Member # 743) on :
Then you had the ELISA, peets. If you really think you have Lyme, find a Dr who will run a Western Blot thru Igenex Lab.
You can order a test kit for free. Take it to a willing Dr and when you get the blood drawn, you send it in with the money.