My son has Lyme as well as some other tick born disease that I didn't catch the name of what other one it was. I was not able to get to a LLMD so went to an infectious disease specialists. My son was diagnosed in the beginning of February and he finally had a decent day today for the first time. Please forgive me as I am new to this site. I hope to be able to see your replies.
Posted by GretaM (Member # 40917) on :
Hey there and welcome
I had (still do) a hard time navigating at first also.
Good to hear your son has had a good day! That is wonderful!
What treatment did the ID doc prescribe for your son for lyme and also the other coinfection?
Lyme is a real slow "grower", about every 4 weeks, so if the treatment was 4 weeks or less, wouldn't adequately kill all the Bb in your sons body, depending on how far alone the infection had progressed.
Also, if just doxycycline was used to address the lyme infection, it has been shown to convert the Bb spirochetes (screw shaped bacteria) into round cysts. Bb goes into this cyst shape to protect itself from antibiotics. So the doxy would have converted the majority into cysts.
When doxycycline is stopped, the cysts will turn into spirochetes and burrow into more tissues and body systems.
Sometimes, an LL will prescribe doxycycline (or other tetracycline) at first, to address some coinfections that can be deadly. Then after, knowing the lyme spirochetes have converted to cysts, will add in a cyst buster like flagyl or tinidazole, along with the original tetracycline, and will likely add in a third abx.
At a very minimum, if the infection was caught early, an LL would probably do this for 2 growth cycles (ie 2 months).
I just wanted to give you some facts, as if you saw a typical ID doc, you and your son were probably told, "The antibiotics got the infections, and even though your son doesn't feel better yet, all the bacteria are dead. He doesn't have lyme anymore."
Which is a lie.
Bb has changed so much since the original guidelines were released by IDSA. The information and treatment being taught to the ID docs is outdated and incorrect.
Anyways, off my soapbox.
How long to feel better?
It depends on adequate and timely treatment by a LLND or LLMD.
I was misdiagnosed by a neurologist.
Two months of severe neuro lyme mimicing MS and at times ALS.
Have been treating a year. Minimum of 3 oral abx, as well as IV abx for the last 7 months.
I've had 3 good days in the last year.
Stopping abx sets me to square zero, and I choke on my food, can't speak, and get bells palsy.
Please please please do everything in your power to prevent your sons lyme from going into neurological lyme.
A visit with a LLND or LLMD, even for an assessment, could be the difference between 365 good days every year versus 3.
Best wishes to you and your son. I am so glad he has you there to rally for him.
Posted by seibertneurolyme (Member # 6416) on :
You did not say how old your son is. Children and maybe teenagers seem to be easier to treat and cure than older adults.
A lot depends on how many coinfections a person has and how long they have been undiagnosed and also other medical conditions such as diabetes for example. There are also genetic factors that can compound treatment -- coagulation defects or celiac disease for example.
Lyme and tickborne diseases frequently require complex treatments that regular infectious disease docs do not believe in. The doc is at least half the battle in getting well.
If the doc did not suggest probiotics and a gluten free and sugar free diet then long term antibiotic treatment will predispose the person to candida (yeast) overgrowth.
In general most LLMD's would say that continuous treatment for 1 to 3 years may be needed to put a tickborne patient into remission. Most do not use the word cure but say remission instead.
Also good LLMD's will do a trial treatment for the 2 major coinfections of babesia and bartonella even with negative tests. The tests for those coinfections are not much more reliable than the lyme tests.
Good luck and feel free to ask as many questions as you need to. People on the forum are very helpful.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
If this is an infectious disease DR... he/she will not treat for a long enough time for your son to recover completely.
Please begin your search for an LLMD immediately.
HE CAN GET WELL with the right doctor and treatment.
Everyone has given you very good advice. You can find an LLMD in the "seeking a doctor" forum. Look below right, where it says "HopTo:"
It is so important to get proper treatment. I was misdiagnosed for two years. I have been treating for 6 years now. I have had 7 infections.
Buy the book "Cure Unknown" by Pam Weintraub. It explains the controversy surrounding lyme treatment. There are several good books on lyme, the latest and probably the best, being this one:
I hope you keep coming back and I hope your son recovers quickly. I think a lot depends on how long he has been sick and how aggressive the treatment is.
Posted by yanivnaced (Member # 13212) on :
hi mommakat My 2.5 yo son began abx treatment just about a month ago. Is your son on abx?
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