I was totally healthy as a child.

I was 12 years old when I was bitten by a tick. I had big erythrema migrans behind my right knee. It went slowly away by itself.

13 years old: Visual dysfunction; blurriness in my right eye. Blurriness-"attacks" took about 5-10 minutes about once a week during the following couple of months. I also had hard itching in my both soles, and the skin was peeling off.

13 -23 years old: some back pain, epididymitis, and prostatitis on the right side. Antibiotic treatment. I was 23 years old, when I started to feel very sick all over the body. Year 2000 the blood tests for Lyme were positive. Western blots have been positive and negative since then.

23 - 27 years old: Balance problems, vertigo, feelings of topple backwards, headache, pressure in the head, ear and nasal congestion, ears buzzling (more on the right side), sensitivity to sounds. I have often-facial numbness and swelling,
- Symptoms got intolerable when I was in the sauna or aeroplane. I had also nausea, abdominal pains, starting celiac disease, pain all over the body, muscle twitching, pain, tremor and weakness in the muscles and neck stiffness.
- Painful back: MRI January 2002; L4/5 and S1/L5 disks
- PET-scan results summer 2003: metabolic disturbance on the right side of the small brain, on the temporal sector and the thalamus.

TREATMENTS:
- Summer 2000: The treatments for lyme started.Iv Rocephin 2g daily three weeks + doxy 100mg orally for three months.
By the end of the year symptoms got worse again ->January 2001 Iv Rocephin 2g daily for four weeks,-> neurological symptoms ->April 2003 iv Rocephin 2x daily four weeks - I have been on many oral antibiotics.

THE SITUATION TODAY:
I have very painful inflammation in my prostate and in my right epididymis, pain in the lower back and some neurological symptoms. I have been on IV doxy 200mg daily three weeks, but the inflammation and pain goes on. Today I changed on iv Zithromax 500mg. I have been on levoguine (levofloxacin) 500mg four days, but soon after that started hard ache on my foots and back. I don't know, if I can take it anymore. Next plan is to operate my right epididymis away.

What treatments/antibiotic combination would you suggest for me? The recent treatments do not seem to help me. I have asked my doctors to consult LLMD -doctors, I don't know, when they are going to do it. Thank you for any answers.


 

minocycline and flagyl?

Kent
 

You have enough trouble with Lyme, without having drug induced damage as well.

I can't tell, but it sounds like your treatment has been very on and off. It can take a long time to treat the kind of symptoms you are describing.

It took 8 months of constant high dose treatment before I began to get any relief of my pain. I still live with it daily, but it is improved. Some people take longer.

Have you had treatment for any of the possible co-infections? I don't know what is likely where you live, but Babesia and Bartonella may be confusing the picture, and need comepletely different drugs.

I'm sorry if I simply don't understand how your treatment has gone. I do know that going on and off antibiotics can encourage resistance of the bacteria. Perhaps you need to stay on one thing, or combination of things for a longer time? Bb takes a very long time to kill.

I hope you get some answers.
 

I have been on biaxin, amoxi and flagyl, and doxy and amoxi with low dose flagyl. No t much experience, but I like the biaxin and it seems a lot of people do well on it.

Trout
 

Keep in mind, it's not just the antibiotics that will help, it's how diligent we are about taking good care of ourselves.

In many messages here I've seen it posted on numerous occasions the importance of detoxing and I believe that to be true, as well as good diet, exercise and using suppliments that are needed depending on the individual.

What else is factored into the Bb diagnosis? Is it strictly clinical?

The best protocols for abx are Dr. Burrascano's and the ILADS stuff, I believe. And they all push for long term treatment and coinfection treatment. Sounds as if you've just hit the herx cycle, when pain is at it's worst.

Are you on the abx long term now? What pain killers/anti-inflammatories are you using?

My husband just started plaquenil, which, according to what I've read, is an anti-inflammatory, as well as an antimicrobial and also appears to have anti-Bb cyst properties. He's definitely experiencing less pain since starting the plaquenil.

Have you done any detoxing, especially with something like Questran, or the full-body detox formulas that use bentonite or charcoal? It won't cure LD and it's not instead of abx, but it may reduce the toxin load and possibly the inflammation. You can search this forum for more info. I'm not sure how you'd combine that with the abx, so look into it carefully. And Questran had it's own herx reaction.

For many Lymies, surgery can kick off more problems. So I hope you can hold off on that!

Finally, Lymnetters use a lot of supportive/alternate protocols. Some folks have found great relief from pain with the ozone saunas, with hyperbaric chambers (including the low pressure home chambers), and naturopathic approaches (eg, frenchbraid's post at http://flash.lymenet.org/ubb/Forum1/HTML/025754.html).

Also, skyking's post on Rife at http://flash.lymenet.org/ubb/Forum1/HTML/025301.html , if getting abx continues to be a severe problem. You might also want to cast an eye on the Marshall Protocol -- it's still a very mixed bag in terms of results , and very very new and unproved with regards to Lyme and coinfections, but you can't be too educated on the full range of treatment options, as far as I'm concerned: http://health.groups.yahoo.com/group/marshallprotocol/

Sending you best wishes. Keep pushing for the treatment you need. Please keep us posted.

[This message has been edited by minoucat (edited 19 June 2004).]
 

Troutscout; I have been on Flagyl couple of weeks. I really have to be on longer-term antibiotics.
Riversinger; My treatment is really ON/OFF. Here in Finland doctors have general guideline, that lyme-patients are on iv Rocephin 3 weeks, and if it not works, will start big problems with doctors.
Lymiecanuck; I have to try to be on Biaxin and Penizillin, so long as it's possible, as soon as I have recovered from an operation.
David; I would really like to know more about on your treatments. What kinds of symptoms you had/ have?
1981Z28; I have to try long-term antibiotics, I have sometimes stomach problems, and it's then difficult.
Minoucat; I'm on the iv Zithromax 500mg daily now. I use ketoprofen as usual, but now I use morphine's derivative. Pain is so strong, so I have no alternative. I don't know Guestran, what is an active ingredient on it? I have been on supportive/alternate protocols, for example chlorella, alphalipoid acid and etc, and good diet and exercise. I also have norift-rife, and I have used it, but maybe not long enough. I'm just unsure, if it makes electric-allergy to me? Do you have experience on it?

Thank you for all answers,input and help.

 

Beta sisterol is non-prescription and has been used as an alternative to Questran. I have no experience with it, so I can't tell you more. http://flash.lymenet.org/ubb/Forum1/HTML/023016.html

Can't answer the Rife question; suggest you go to the Lyme and Rife pages and post there at http://health.groups.yahoo.com/group/lyme-and-rife/
 

Have you been able to get a copy of the ILADS Guidelines for your doctors? Because they have evidence for the recommendations, and they have been published in a peer reviewed journal, it may carry some weight with your doctors.

Check out the Treatment Summary, see if it might be helpful. If so, you can order a copy from ILADS.

Whichever antibiotics you use, it will be more effective if you can use them consistently.

Are you also on Eurolyme? They would probably also have some strategies for working with the doctors where you live.

David I have been wondering about your contact info. I have a friend who would also like some feedback on your protocol with Bicillin. Could you e-mail me?
 

Bored's girlfriend,
Catherine
 

Is the surgery on Bored's back? If so, I wish for him the luck my son had. Prior to surgery, he couldn't stand up straight for 5 months, he was in so much pain. After surgery, he was up in an hour, almost pain free, even after surgery.

The pain has not recurred in 3 years. The only things we did were to have a good surgeon, nothing else special. I hope things go as well for Bored.

David, mail is on it's way. Thanks!