Your doctor doesn't sound Lyme literate to me. Why would he expect improvement so soon? My PCP did the same thing to me. I started getting major twitching from doxycline and she thought it was a reaction to the medication. So I got in to see a Lyme literate doc as soon as I could (3 months later) who told me it was a herx (as I had suspected). He couldn't believe that she took me off of the antibiotics. Oh, well!

My timeline:

Diagnosed February '06. Was on doxycycline (low dose) prescribed by my PCP, February '06, for 5 weeks or so. It increased my brain fog and fatigue, herxing (twitching/shaking in right arm and shoulder--like Parkinson's). No improvements.

First visit to lyme literate doctor July '06. He put me on higher dose doxy, then switched to biaxin/plaquenil. My symptoms got worse.

He added Ceftin. This almost immediately cleared the brain fog (for me, it doesn't for everyone). I added Mepron on October 1st and started having a few good days, where I felt nearly normal. But I still had chronic fatigue and needed to drink coffee to function "normally".

Now I'm at a point on herbs where I do have some good days as well. Still drinking coffee (one large mugful in the morning), though. And I frequently need naps. The herbs I am on are basically for detoxing at this point (Cowden Protocol). The bacteria level is low. I just need to get rid of the residual junk in my cells from the onslaught of antibiotics.

Still have chronic fatigue, headaches, sometimes joint and muscle aches, too. But this time I know it's from the herbs working and not from the Lyme disease running rampant. So it's a better kind of pain (if that makes any sense at all).

It's truly a long haul. It's been nearly a year and a half for me at this point.

Guess what? Today is my first good day on treatment ! I am SOOOO excited; tinnitus is low, no headache, low nausea, & my energy is UP!

Congratulations on your good day! Such great news!

Which meds are helping most for you?

Have you checked out the Lymenet forum? I've found it chock full of information and encouragement.

I wish you well and much luck with your recovery from this horrible disease!

I am on California Lyme at
http://health.groups.yahoo.com/group/CaliforniaLyme/

It's hard to know which meds are helping the most because I am on so many; I'm taking the herbals of artemisinin and Grapefruit Seed Extract, and prescriptions for flagyl, doxy, mepron and zithromax. I remember that I need the doxy so that mepron doesn't become resistant, but I don't remember about the others.

ooops double post

Hi. I have Lyme disease. I discovered it after I started having arthritis feelings in my joints (mainly hands) and extreme fatigue at age 26 last year. I tried abx for 6 months and quit and then I got better and better. My dr did not want me to quit abx, but from my research and experience, once you catch Lyme as late as I did (months or years later) then the odds are that abx will not work.

I went to a naturopath/homeopathic doctor and she expalined that I started feeling so bad on abx because of imflammamtion. By taking out my allergy foods, fixing my nutrient defiencies, supporting my adrenals, staying on a really clean diet, and just generally taking care of myself I a, generally symtpom-free.I really only have a problem if I get really run down or eat dairy/eggs/gluten. She said there are probably many people walking around with Lyme and they never can tell. I reacted so badly because my immune system was run down from stress and nutrient defiencies (many worsened by when I was a very low fat strict vegetarian). I also take high vitamin cod liver oil which I think helps a lot.

This same dr helped treat a woman with very chronic Lyme. She had been on all sorts of meds and was in a wheelchair....she put her on a low-imflammation diet (meat, vegs, nuts, fats ect), enzymes, nutrient supps, and a liver detox and she was walking within 90 days.

Honestly with what I know now I would have never taken abx for Lyme. I know that will not be a very popular opinion but if you want more info feel free to pm me.

I hope that you are feeling great soon no matter what path you choose

Jen

No, no, no!!! What you were experiencing was a herx (herxheimer reaction on the antibiotics)! This means that when you're feeling worse, you're actually getting better!

I had Lyme disease for 10 years before it was discovered and the antibiotics helped immensely. I am on an herbal protocol now but it was the antibiotics that truly got me to the level I'm at.

The reaction could have been in part to inflammation, it's true. When we have a bacteria load as high as we do, with Lyme, our bodies are bound to react to it, with inflammation.

It doesn't sound like you had a lyme literate doctor. Diet and detox is definitely PART of the solution. The thing is, with Lyme this could make you feel better TEMPORARILY but without medicine (be it herbal antibiotics or the harsh ones), you will never be cured permanently.

My LLMD has me taking cod liver oil and coconut oil to combat the inflammation, and a low glycemic diet such as these on the board here, in conjunction with the herbal antibiotics and herbal detox herbs. I cannot imagine just doing the diet/detox.

I am scared for you!!! Please find a Lyme Literate MD in your area!!!

My dr did want me to stay on abx. I did take them for 6 months and I decided that the abx had done as much as they could and to keep going would be detrimental at he point I had gotten to. I did not want to live my life that way constantly on medications and experinecing their side effects with littel proof that it would "cure" me.

I am 27 and wanted to have more children and I was on abx that could cause birth defects. I just wanted to move on with my life and so I decided to really boost my immune system instead. I read and heard so many stories of people taking abx for years without ever really improving. If someone told me that it was totally curable with abx in X amount of time I would have been more open to continuing. But you never know if you have killed it all off and I don't beleive you can ever be totally Lyme free when you catch it late. So, with all that and by faith I decided to try another route and it is working for me.

Have you felt better since being off of the antibiotics? Which antibiotics were you on which cause birth defects? I agree that you shouldn't be on something like that. But at the same time, the Lyme bacteria can cause birth defects as well...so 6 of one, half dozen of the other.

I hold on to the hope that it can be cured totally. Then and only then, will I have a baby. We have to make sure that there is absolutely no Lyme bacteria left in our systems before getting pregnant, as the Lyme bacteria can be passed onto the baby.

My Lyme was indeed left undiagnosed for a long time (10 years), and now, after about one year on antibiotics, the bacteria level is reallly low in my body. I am on herbal antibiotics to take care of the rest, and also on the herbal detox. So I am very hopeful!

Good luck!

I had read on some websites that Lyme could cause birth defects. I decided to go to the research journals myself. (These from the pub med data base) Here are some examples:

Lyme disease in pregnancy: case report and review of the literature.http://www.ncbi.nlm.nih.gov/sites/e...Pubmed_RVDocSum

Maternal Lyme disease and congenital heart disease: A case-control study in an endemic area.
http://www.ncbi.nlm.nih.gov/sites/e...Pubmed_RVDocSum

Lyme disease during pregnancy.
http://www.ncbi.nlm.nih.gov/sites/e...Pubmed_RVDocSum

Lyme disease and pregnancy outcome: a prospective study of two thousand prenatal patients.http://www.ncbi.nlm.nih.gov/sites/e...VAbstract Plus This one has some split info. I wish they gave the numbers for the increased risk group but I cannot access the entire article.

Fetal outcome in murine Lyme disease.
http://www.ncbi.nlm.nih.gov/sites/e...Pubmed_RVDocSum

There is a lot of scary info to sort out there, but much research shows no association between birth defects and materal Lyme. When I researched Lyme myself my husband and I have felt comfortable in the decisions we have made. It seems there are problems with the babies when the mother contracts Lyme while pregnant and does not get treatment. (Like the researchers conclude in "Fetal outcome of murine Lyme disease")

I was on ceftin, cirpro and omnicef..maybe I tried other, but I can't remember the name. I just keep feeling better and better now as long as I live right (avoid mt allergy foods ect). I very rarely feel like I have Lyme--I will have a little pain in my knuckles for a few hours and then it will disappear. My dr was a lyme literate MD and was very much for long term abx, but also supported me in my decision to quit in March. He said he even had a woman take a food allergy blood test and when she avoided all those foods she felt normal and never took abx for Lyme even though she tested postive for that too.

Anyway, I am glad that you are satisfied with your protocol and wish you a fast recovery.

Jen