posted
I'm starting to get a little worried about my treatment and wondering if I'm heading in the wrong direction.
My treatment started over the summer while the tick was still attached. The tick was on me for exactly three weeks.
The doctor removed the tick and started me on Doxycycline for 6 weeks (at 200mg per day for two weeks and then up to 400mg per day for four weeks). I then switched to Minocycline at 100mg per day after seeing an LLMD and having a positive Western Blot.
The Minocycline brought stronger herx reactions. After two weeks on mino, my LLMD added Bicillin LA shots (2.4 million units twice a week). I have also since increased the Minocycline to 300mg per day.
Despite all of the antibiotics, my symptoms just seem to get worse. Also, I haven't had a noticeable herx reaction in six weeks or so.
Muscle twitching started about a month ago. About a week ago, the muscles in my arms started feeling extremely soar -- as though I had just finished a long workout. Now, I can barely hold my arms up and it's strenuous to lift a glass of water.
Roving joint pain between my knees and elbows started about two weeks ago.
I've tested negative for the coinfections and am not sure what to think at this point. I'm going to ask my LLMD later this week about heavy metal toxicity. I do have several mercury fillings.
I am also going to ask about IV antibiotics.
I am wondering if anyone else has any thoughts or suggestions or ideas. It just seems like I'm headed in the wrong direction -- especially considering how early on I began treatment after the tick bite.
I'm really hoping I didn't end up with a drug-resistant infection.
Thank you in advance.
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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posted
I would be concerned about the fillings. I had mine removed in 1991 not knowing I had Lyme Disease. Between that and exercise I went into remission until 2003. Be sure a qualified dentist does the removal.
I also would be concerned about coinfections. I was clinically diagnosed with babs and bart due to symptoms and response to treatment. Testing for coinfections is poor because not all strains are tested for.
You are on good drugs, so if you're getting worse, I'd be really suspicious of coinfections.
Plus, you didn't mention how long you have been on treatment total ..... it might be too soon to be expecting big results, sometimes the meds can make things worse before they get better .... they stir up the bugs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for the response. Total, I have been on antibiotic treatment for almost four months.
I went on a hike in Virginia on July 21. I noticed the tick on August 11, and had it removed the same day. That's when I started the Doxycyline.
About a week after starting the doxy, I started to feel very sick and haven't felt well since.
In all, my symptoms have included fatigue, tingling, vision changes, and now the muscle twitching and muscle fatigue.
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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I'm not a dr, but I think the following are some possibilities.
You could have been infected some time ago and your immune system has kept it under control. The latest bite (with a long attachment time) could have added too much for your immune system to handle.
If you already had an established case of Lyme, then treatment will be more complicated and take longer.
I know this isn't what you want to hear, but it could explain why typical treatment is not bringing the desired results. In other words, you could be on the right track after all.
Antibiotics (abx) kill good bacteria along with the bad, so the good bacteria has to be replenished to keep the digestive system in balance.
Have you been taking good quality acidophilus in adequate amts? You need to take it 2 hours after abx so it can help before the abx hit it again.
Drink lots of water to wash the toxins out of your system. Eliminate as much sugar and starches as you can from your diet.
As mentioned, the tests for co-infections are not any more reliable than tests for Lyme. Many are finding that Co-Infections are present much more often than was previously thought.
The main problem there is that, generally speaking, each co-infection takes different meds.
The fillings could be part of the problem, but I wouldn't have them removed until discussing it with your LLMD. I've heard that if removed improperly, more mercury gets into the system than if they are left alone.
If you have co-infections, they need to be dealt with first.
Also, a lot of people have terrible problems due to mold. Could this be part of the problem?
Feel free to ask questions. Use "search" under Post a Reply to look for info on specific topics.
Edit to add: You said you started feeling worse about 5 days after starting Doxy. That could have been a herxheimer reaction (herx for short).
When abx kill bacteria, they give off toxins and symptoms get worse. Sounds bad, but a herx shows that the medicine is working.
Or feeling worse could mean that the abx is not the right one for the disease causing your symptoms.
Can't get much more complicated than Lyme and co-infections.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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I also would be concerned about coinfections. I was clinically diagnosed with babs and bart due to symptoms and response to treatment. Testing for coinfections is poor because not all strains are tested for.
You are on good drugs, so if you're getting worse, I'd be really suspicious of coinfections.
I agree....and about what SIX said concerning the herxing. You may just be feeling worse because you are in a constant herx.
Many LLMD's will TREAT all coinfections, no matter what the tests say.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I just wanted to jump in and say that I doubt fillings are your problem. You have a clear correlation going from the time of your tick bite to your symptoms. I wouldn't go off on a bunch of rabbit trails and diversions, plus it's just a big IF. And, there are people like myself who had work on their fillings, and because they were really big fillings, ended up in unreversable damage to the teeth. Some people have gotten worse about filling removals and chelation treatments.
Best wishes,
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
Sounds like a coinfection to me. Muscle fatigue is a common symptom of babesiosis. There are several different strains of babesiosis present in virginia, including babesia canis, but only commercial tests for two strains: microti and duncani.
According to research from mexico, humans can get infected with canine forms of babesiosis.
I have a friend who got infected with babesia duncani-like infection in southern maryland, so if you haven't already, you might want to get tested for this strain.
babesia is a protozoa (=blood parasite) and antibiotics will generally not be effective in treating babesiosis.
Posts: 187 | From Washington, DC | Registered: Dec 2004
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posted
Thanks for all of the responses. They've been very helpful! I'm still pretty new to all of this.
Like a lot of you mentioned, I'm beginning to think co-infections as well given the fact that my symptoms have began to change and shift. At first, there was a lot of tingling, ringing in my ears, stiff neck, fatigue, and insomnia.
Those symptoms have disappeared for the most part and all of the sudden I started getting headaches and muscle fatigue. It's difficult to hold my arms up, for example, and my arms and legs feel tired and fatigued even when I'm just sitting there.
I've had a headache for two weeks straight, and have had strange chill sensations on my legs. I didn't have any headaches really before this.
Reading the lists of symptoms, this sounds like possibly Babesia.
I also got a voicemail from my LLMD a week ago saying that he thinks the Lyme may be going inactive based on my CD57 score, which had dropped down to 90 in October but has risen to 140 as of two weeks ago.
I'm going to ask my doctor about treating for co-infections as soon as possible in my next appointment with Babesia first.
Thanks again for all of the helpful responses!
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
You've gotten great advice.
Babesia is the most likely suspect.
Here's another thing that you might try:
In our Newbie Links, find "Fry Labs."
They do a special blood smear where they actually visualize the protozoa in your blood. Also bartonella, mycoplasma possibly. They have found babesia when even GOOD labs like IGeneX cannot. I suspect this is because there are now so many strains of babesia (last count 16 or so) and only two are tested for. Do a search on here for "Fry" in the title line and see some pretty amazing pictures.
Good luck. Treating babesia if that's your problem will really start to turn things around for you (though it sure might not feel that way at first!!!)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I actually have a question about the Fry Lab test looking for Babesia and Bartonella. I had the test done back at the beginning of October and nothing was detected.
The test was done about 10 weeks after the tick bite. I was told the Fry test does not always catch the Babesia, however.
Would it make sense to do another Fry test? Can it take some time for the infection(s) to become visible?
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I would personally deal with your lyme and co-infetions before considering any amalgam removal, once you are a lot stronger perhaps consider amalgam removal but only at that stage and with an amalgam free dentist that works on nutracutical Chelation/mercury removal- the very last thing you want to do is overload your system with more toxin.
Do consider reading this article regarding testing for a genetic disorder which stops some people eliminating toxins from the lyme die-off correctly, this then builds in your system and you can feel worse, so you are killing the Lyme but end up toxic so you need to remove the toxin at the same time. If you have this genetic default you will need to speak to your LLMD about how to work on removal of the toxin, some people have to take a break from AB's remove the build up and then start on AB's again - therefore the two protocols need to go hand in hand (AB's and Bio-Toxin removal) http://www.personalconsult.com/articles/aggressivelymetxfailure.html
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Oh John. Welcome to the complex world of lyme disease and all its lovely friends.
I agree with Rianna about the toxin removal but disagree about the amalgam removal. Until your amalgams are removed, you continue to absorb mercury. That isn't a maybe, that is a fact.
I used a biological dentist in Winston-Salem, NC. There are quite a few of them down there. Also, one in Lynchburg VA. If you are close to these towns and would like their names, just pm me.
The removal was simple and painless except for the initial shot of course. That always stings.
Right after the removal, I trotted over to my doctor's office and got an IV of Vit C. This is important to help you remove mercury.
I had no bad side effects and no obvious improvements immediately afterward. But I am glad to know I removed that source of mercury toxicity.
When I was first bit, I received 6 mths of abx before I became asymptomatic. At that time, my main symptoms were fatigue and weakness with some minor joint pain. That was in 1995 and the doctor was just shooting in the dark with the abx. My ELISA came back negative for lyme so he wasn't positive what we were fighting though he did suspect lyme.
My chronic lyme hit in 2005 and who knows if and how many times I may have been reinfected. What took me down was a too stressful work situation that I endured several years. That kind of longterm stress will knock out any healthy person.
I have done much holistic treatment which brought my immune system back to a very good position and nearly put me in full remission when I was bit again this spring. I dropped like a rock. It is scary to me how quickly that bite put me right back to square one.
So again I am on abx and back up and running again. This time I bounced back very quickly and I attribute that to my overall improved health from the alternative care.
My alternative care was administered by a medical doctor. It did not involve some of the more controversial methods out there. It was simple bloodtests, urine challenge tests to identify what complications were involved like heavy metals, leaky gut, systemic yeast. Any minerals or hormones that were lacking were supplemented.
Strong focus on helping my body detox by strengthening my liver with IVs of glutathione and Lipostabil (blood thinner). Change of diet to a much more vegetarian diet. Meat was allowed, but sparingly and fish was also allowed. No sugars and processed foods. Originally, I was on so many supplements but now I only have to take a very few.
Our body is our foundation and to not heal it while killing microbes is like building a house with no foundation. Doomed to fall/fail.
Another thing. More herxing does not always equal quicker healing. It can equal damage to the body. Let your doctor know about your symptoms and ask him/her if you could cut back the doses or pulse to allow your body time to detox.
Initially I detoxed so poorly, even an Epsom Salt bath would put me in bed for 2 days with severe joint pain.
I believe what turned around my ability to detox was treating H. Pylori (a stomach bacteria). If you have a damaged gut as I did, toxins don't eliminate, they leak back out into the body and recirculate. H. Pylori causes leaky gut as does an overgrowth of yeast.
So many things involved once we get as sick as we are.
I hope this is helpful to you.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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