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Posted 7/4/2012 11:09 PM (GMT 0)
I believe I've had untreated LD for past 5 years. 2 months ago I was bitten by another tick and my doc put me on doxy just in case. I felt SO much better on doxy. After end of 30 day abx I noticed what looked like another tick bite. But the weird thing was this round bruise like rash. Now the red part (looked like a bite) is no longer raised, but the bruise has migrated to a new spot about 5 inches above the bite.

I've not been feeling well. I wonder if this has reactivated LD, or caused a new infection. Should I bother taking another course of ABX? Doc gave me Ceftin, a 14 day once a day supply.

I have a photo but don't know how to post it here.
Posted 7/5/2012 2:08 AM (GMT 0)
Since you have a known tick bite and symptoms, I think you should look into finding a LLMD to help with Lyme. Usually a single antibiotics like doxy or ceftin is not enough to combat Lyme once it has progressed passed the initial stage. Doxy is known to turn Lyme spirochetes into the cystic form when given in low doses (200mg per day). This can make you temporarily feel better until the bacteria senses that it's safe to come out of hiding (cysts) and start wrecking havoc on your body again.

Also, there are co-infections which should be considered. Many of them require different meds than those used for Lyme. If you are not feeling well after a tick bite, I would definitely consider taking antibiotics or herbs to stop the infection from progressing. I think you will likely need the guidance of a LLMD if you have been ill for 5 years.

I used to think tick bites were no big deal. I have had 5-10 per year for the past many years with all the hiking and outdoor activities I used to do. I NEVER went to doctors for anything. Then I got extremely ill from a tick bite with a 105 fever and continued to decline since then. It turns out I was likely being reinfected over and over and the lack of ANY treatment now caused a very severe case. I like lots of other people with Lyme am having severe neurological problems, liver and heart involvement and terrible fatigue and pain. If I had known how serious it was I would never have waited so long to go to a doctor (a LLMD) and get treatment.

I don't mean to be an alarmist, but I can't express how strongly I feel about prompt treatment. I think that if I had treated my symptoms before they got severe I would not be in the shape I'm in now.
Posted 7/5/2012 3:29 AM (GMT 0)
Thank you SummerPie. I really appreciate your suggestions and your concerns. 5 years ago I was really so very ill. It wasn't until about a year ago or so that I realized it was Lyme. I was never tested. I went from doc to doc, most of them telling me it was anxiety, one told me it was autoimmune, another suspected MS but an MRI ruled it out. I had hand tremors, panic attacks, and had a shaky brain sensation when I tried to fall asleep. I developed a depression so dark I didn't recognize myself. I'm sure my story is not dis-similar to many here.

Thankfully, somehow my body created a new norm for me. I got out of the depression with help from a psychologist and my autoimmune problems have subsided. I had a positive ANA but was recently retested to discover it was negative. That was quite a shocking surprise to me.

I've been functional and doing quite well most of the time, but since this last tick bite I've been having the brain fog again and lower back pain reminiscent of my previous illness and it's really got me frightened.

Funny you say that about the fever. After I gave birth to my son 3 years ago I had a 105 fever and my doctors never did figure out what caused it. Since LD makes the most sense to me I have often wondered if it was something to do with my untreated LD. I worry a lot about my son, but he has really good health and a seemingly healthy immune system and is developing normally, thank God.

Anyway, thank you again for your concern. I've inquired about finding an LLMD in my city and I'm hoping to get an appt asap as I don't want to mess around.

Since I doubt I'll be able to get an appt this week, I wonder if I should start the Ceftin immediately. I started Salt/C protocol today and I can tell I'm herxing already. The brain fog is making it difficult for me to figure out how best to help myself while I wait for my doc's appt. I appreciate any advice and know you are not a doctor, but I value your opinion.
Posted 7/5/2012 2:23 PM (GMT 0)
HI Penny,
I would highly suggest that you read through Dr. Joseph Buurascano's "Advance Topics in Lyme Disease", as it's really packed full of information on treatments, the right dosages of abx to battle these incredibly complex infections, and other important info! You can always find the link in our 'New to Lyme?' thread (which you really need to read through as it's full of info as well!), but here's the link as well:
www.ilads.org/files/burrascano_0905.pdf

It's not written in scientific or medical speak, so you should be able to read through it and make sense of it. Dr. Burrascano is one of the docs that LLMD's look to for info on tick-borne infections, so this is a really reliable source of info.

My question was do you remember what your dosage of abx was? If you weren't treated using a high enough dose, then you never got rid of the infection, it was only driven deeper into your system(s), so more treatment would be necessary.

I would also suggest that you start detoxing right away, as it's the toxins from the bacteria that cause us the most discomfort and brain fog. There is a really great post in the 'New to Lyme?' thread that describes the best ways for those with these infections to detox.
Posted 7/5/2012 2:39 PM (GMT 0)
Thanks. I read Burrascano's excellent paper last night. I was treated with twice daily 200 mg for 30 days and I doubt that was enough. After reading his paper though I'm not sure what step to advocate with my doc for next. Higher doxy and longer or go to ceftin?

I'll detox, yes. Thanks for the link. I've read a lot in the newbie folder, but honestly I'm on overload right now. I'm trying to figure out my game plan. I'm also reading Dr. Cowden's section in Connie Strasheim's online book. Feeling so overwhelmed but thankful to be meeting helpful and caring people while I muddle through this.
Posted 7/5/2012 2:59 PM (GMT 0)
The higher doses of Doxy are what's recommended unless the patient has an issues like an allergic reaction or just can't tolerate the Doxy at those doses. If you do go with Doxy, please eat something substantial with each dose...even though it says it's best to take on an empty stomach, as you are in this for more than just a few days! You will need to protect your stomach from the strong doses of abx.

I fully understand the overload of info right now!! LOL! Been through that myself! With the brain fog so deep and thick that I had to have others explain everything to me! I would still suggest that you get started with the detox suggestions that we have in the 'New to Lyme?' thread right away. Those toxins are what are causing the most discomfort.

Keep on reading! The better informed you are, the better decisions you'll be able to make for yourself! I've gone with a Holistic form of treatment personally, but whatever route you choose to take, detoxing & gut health & anti-infective treatments are key to healing from these infections.
Posted 7/5/2012 6:00 PM (GMT 0)
Thanks SO much. I got some epsom and hydrogen peroxide and will begin detoxing today. I have a call into my doc. They lost my file and never called in my RX. I think they are giving me another low dose of doxy again. It turns out it was 100 mg twice a day NOT even 200. What amount should I advocate for and for how long? Also, what blood test should I ask for? She ran western blot 2 months ago and it was negative, but with the rash I have I wonder if it's now positive ... but then again I know how those tests are not effective.

Thanks also for advice about eating food. My gut flora is pretty good shape and I didn't have ANY probs with the first 30 days of doxy. I make my own yogurt so I think that's been helpful at maintaining a good bacteria base.

I would really like to try for natural but we have NO money. My hubby's in civil service and we have 3 kiddos. Thankfully I do have health insurance and I'm hoping to convince my doc to go thru the ILIAD training. I don't want to insult her. Bit worried about that. But my meds will be covered if they are prescription, so for right now that's my course. Hopefully she'll get me on a high enough dose. (edited out as I found the answer in Buranscano's paper.)

Post Edited (PennyPru) : 7/5/2012 1:28:47 PM (GMT-6)

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