Advice from two different doctors need help!!

Question I need advice.
How many of y'all did the big 3-4 weeks of doxy when first diagnosed and still have to do more meds?

My LLMD says I'm so far gone there is no point in 3-4 weeks of doxy, but to build my immune a system and other areas then start months of antibiotics until we figure out best treatment. But my primary says we need to at least do 3-4 weeks of doxy bc it's really dangerous to not, then if I want to take the supplements and listen to the LLMD and be treated by her, bc I'm risking possible death of I don't do antibiotics soon (I really don't think she knows what she's talking about, but she has treated lyme before). So I don't know what to do. Should I plunge and do the doxy bc according to my doc that will at least get a baseline and possibly heal it, just in case that would work, or listen to my LLMD and take it slower?

I did 1 month of 100 mg of Doxy 2x day and it kept me from getting worse and improved some of my symptoms slightly. I did not dare to get off the abx for fear that I would end up completely paralyzed and in a wheelchair if I did. My hands, feet, and face were tingling and going numb so the concern was real. After that my LLMD put me of 200mg of Doxy 2x day. I was on it for 4 months. I made some improvement. After that I started colloidal silver and colonics which made a huge difference. Personally, I am glad I did the antibiotics because they kept me from getting worse. Did they have side effects? Absolutely, but at the time it was the only thing available to me and my immune system was just too shot to attack it from that angle. Good luck deciding, it is never easy.

Thus said, I knew nothing about detox until I joined this forum so I didn't really get to start a good detox program until about 4 months into treatment.

Welcome to the forum!

That's a tough situation for you to be in. I'm sorry you're getting 2 very different opinions on what to do. The LLMD has had training on how to treat Lyme and yours may be right about strengthening your system before the onslaught of antibiotics, but I don't know how severe your infection is. You do need to learn about detoxing, which can be found in the "New to Lyme?..." thread at the top of the page.

Once your immune system is built up, it will start going after the bacteria too, so it's not like it isn't getting treated at all. You'll still need to go after it with something else, but will handle the treatments better if your system is stronger, in my opinion. All we can do is offer our thoughts, but you need to decide what's best for you overall. Good luck!

Your LLMD is probably right about the Doxy at this point since it won't cross the blood brain barrier.

I was given 3 weeks of Cipro from my Doctor to treat a severe case of Lyme from a tick bite in the Spring of 2010. It didn't get all the spirochetes and blebs hiding in my spinal fluid so neural symptoms persisted on a come and go basis.

I researched a huge amount of scientific papers and abstracts and came up with a pulse protocol to get to the Spirochete->Bleb->Spirochete->Bleb Survival Cycle that Borrelia creates in the spinal fluid. By the end of 2010 I was symptom free from the first bite.

I was bitten again by a tick and started new symptoms when cleaning up after a tornado went through my neighborhood in the Spring of 2012.

I went straight to the pulse protocol and was symptom free in 8 weeks.

Any successful protocol, whether it is standard prescription antibiotics or a combination of herbal components has to address three forms of Borrelia and most importantly, can cross the blood brain barrier.

1) spirochetes going through normal cell division (this is the only time most abx's can kill them, Minocycline has the advantage of crossing the blood barrier into the spinal fluid)
2) blebs (egg-like round bodies) formed and released by dying spirochetes (Tindamax is a good example and can cross the blood brain barrier)
3) spirochetes not in the reproductive process that are either mobile or hiding in biofilm colonies (Samento+Banderol, Pinella or Wild Cherry Bark extracts will kill them in these forms)

According to Dr. Sapi's work, Doxy, taken alone, potentially can create more egg-like bleb forms of Borrelia than it kills spirochetes!

I would start the doxy. Whatever your PCP is seeing is significant. This virus has evolved into a very potent infectious disease. I had serious brain swelling and pain and the doxy immediately helped my symptoms.

I remember thinking when it first went neuro that I needed to be in a hospital. I didnt even know what was wrong with me but knew I was seriously ill. Best of luck to you. Prayers up.

Post Edited (BarnGurl) : 3/2/2014 2:56:05 PM (GMT-7)

inspiredby3 - Oh, and I am also detoxing and on the anti-lyme diet. I am hoping all of these things together will be enough to kill it all off. My bloodwork comes back in about a week.

TMC - wouldn't the doxy at least prevent the lyme from spreading?? I would ask that question. I would lean towards taking some sort of antibiotic at this point!! And make sure teasel root is part of the detox plan - it is supposed to work wonders.

Once a person starts showing symptoms of Lyme disease, there's no actual "cure", but can be put into remission - meaning that the bacteria will remain in the body, but will not be active and produce symptoms. It's similar to having cancer and being in remission - both can return under the right circumstances.

Some people's immune system can keep everything in check and they will never have to deal with these infections again unless they are reinfected. Others must continue on with detoxing, a clean diet, and stress reduction.

Building up one's immune system will help not only beat these infections, but will also help to keep them from relapsing as well.

TMC, what are your symptoms? How long have you been feeling off?

Personally I would start antibiotics and some herbals, I've been infected for 15 yrs and my doc started me on A-L complex cause I wasn't CDC positive and after I herxed and then my next appt he started antibiotics. I would think it could keep it from duplicating but I am all new at this also, got diagnosed in nov.

Hope you feel better soon.

How long do you suspect you've had these infections? The chances of dying from Lyme is actually quite slim unless you have some serious heart issues due to Lyme disease or other conditions that might come into play. It was irresponsible for your Primary to say that to you, but at least she recognizes that it's a serious infection.

There are reasons to follow what a LLMD will tell you, as taking some antibiotics can force the bacteria into a cystic form that the antibiotics won't be able to break through.

Please don't see the Infectious Disease doc - they won't go by the treatment standards that you need to heal.
www.ncbi.nlm.nih.gov/pubmed/20946067

In order to see a doc that will actually help you heal, here are some things you can do:

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

Send an email to: [email protected]. You can also go to tbdalliance.org/ to learn more about these infections.

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

tmc..I had left side numbness tingling. I lost feeling in my left arm down to the fingers. Then I started having stabbing pains in my neck and shoulder. The stabbing pains moved to the chest and under the ribcage. My vision was effected and so was my cognitive functioning. I had really bad dizziness. If possible try the ammox 2000 mg and Cefdinir 600 (300 twice a day). Ask either of the doctors to start you as soon as possible. It helped me immediately. :) Im not perfect by any means but I am able to work full time about 7 months later thanks to my llmd.

Traveler, You addressed a concern I have. Do you know how soon the cyst formation can start? Bc i asked my llmd about this and she said that's its not a concern for me bc I am not a chronic case. But how can she be sure?

I'm taking doxy 300mg without as problem. Why did you struggle tolerating it? Just curious