http://www.immunesupport.com/library/showarticle.cfm/id/ 6431

and Bicillin injections are as well

the issue with amoxil is its broad spectrum.

more studies showing Pens will NOT have the Lyme go into cyst form than the ones showing they may.

from Burrascano:

We also have new information that B. burgdorferi exists in at least three different forms: bacterial (the well known, cell wall-containing spirochete), spheroplast or l-form, and the newly discovered cystic form. The importance is that only the spirochete form can be killed by beta lactam antibiotics. Spheroplasts seem to be susceptible to tetracyclines and erythromycins, yet the cyst so far has been proven to be susceptible only to metronidzole

Penicillins dont "cause" cystic Lyme--if its early and you take a high enough dose for a long enough time period, the Pens will work against it!! The spitochetal forms DO have a cell wall and will be affected--when some that dont die lose the wall theyre the L form ( spheroplast--see wiki article below) and those are hit with tetracyclines and erythro/macrolides--so giving penicillin alternating with or at same time as another abx will get BOTH spiro's and L forms and none should go cystic ( which btw can be hit by diflucan and tinidazole)

here is a brief Wiki excerpt( all I can muster while having a Bart relapse myself)

β-lactam antibiotics work by inhibiting the formation of peptidoglycan cross-links in the bacterial cell wall. The β-lactam moiety (functional group) of penicillin binds to the enzyme (DD-transpeptidase) that links the peptidoglycan molecules in bacteria, which weakens the cell wall of the bacterium (in other words, the antibiotic causes cytolysis or death due to osmotic pressure). In addition, the build-up of peptidoglycan precursors triggers the activation of bacterial cell wall hydrolases and autolysins, which further digest the bacteria's existing peptidoglycan.

Gram-positive bacteria are called protoplasts when they lose their cell wall. Gram-negative bacteria do not lose their cell wall completely and are called spheroplasts after treatment with penicillin.

Penicillin shows a synergistic effect with aminoglycosides, since the inhibition of peptidoglycan synthesis allows aminoglycosides to penetrate the bacterial cell wall more easily, allowing its disruption of bacterial protein synthesis within the cell. This results in a lowered MBC for susceptible organisms.

fyi the cell wall is a target in 2 ways: when the bacteria reproduce if they cant form the wall theyll die and also weakening the wall causes fluids to rush in and /or cell death. Plus the weaker wall allows other drugs to enter and do their work.

feeling worse may be a herx or reaction to the drug itself. Id not so easily discount the Pens!!! had I gotten Penicillin way back 18 yrs ago Id probably not be here posting now, Id probably be well and teaching University again , wondering how the Lyme world was doing!!

Finette

Thank you very much for all of the information. I will check out the website that you recommended. I live in California, but I found out about Dr. Jones through another support group and have contacted his office for some adivice. I was not able to speak directly to Dr. Jones, but one of his assistants spoke with me and was helpful. She told me that my son's doctor could call and speak to Dr. Jones directly.

Could you tell me a little about your son. How soon did you find out he had contracted Lyme from you? Was it right away or did you not know for a while? How is your son doing? Has he responded well to treatment? Is he okay now?

Thanks,

Mammabear

Thank you very much for your help. My son started amoxicillin two days ago. I believe the doctor wants him to take this for about four months or longer. We are still waiting for the results of his co-infection test from IGENEX. I'm sure those results will inflence his treatment, as well. Thank you for the phone number. I plan on calling tomorrow. Any information I can get at this point is a help.

Thanks again,

Mammabear

well Ill try to be brief--its such a loong story--if it doesnt make sense blame my efforts at brevity--or my Bart relapse LOL

little over 18 yrs ago pregnant with number 3, finishing PhD Developmental Bio

8th month-weird rash and heart sx--of course "stress from doing too much"

sx so bad that by end 9th month lost ALL preg weight, but baby seemed fine--delivered ok but I had cardiac sx requiring specialist to stand by. In first few months Evan had hyper reactive nervous sytstem ( light sound etc all irritated and startled him) and GI stuff--he was the youngest baby to be put on Zantac at that time--not real regurg or reflux but high acid etc they blamed it all on ME--said I was pumping adrenaline from panic and "thinking" I was ill--and he was simply getting rid of MY extra adrenaline--

maybe I wanted to beleive--but I did.

No one knew then of gestational transmission--or if they did it wasnt widely disseminated

anyway after 4-5 months of MY sx getting worse ( they sent me to shrinks galore becasue by then the dx was "pot partum depression" despite my yelling that doesnt start before delivery)--sigh I grab the current shrink by the neck and demand to see his own DR--if his wife wasnt a friend and his kids werent going to the same Schehcter mine were he said later he wouldve put me into lockdown--thats how upset I was

I was upset at being unable to nurse Evan beyond 4-5 weeks, and had hard time bonding ( again blamed on PP depression) but in hindsight maybe that was good--with what we know about breast milk!

the shrinks own DR Dr dx MY Lyme and with a plus/minus of months meaning it was a Lyme rash/etc all along!!!

I was pen allergic and so started a bunch of orals--over the next few years I was in/out of remissions etc even had to try Pen IM injection arounf year 6-7--after spending 2 full days at allergists office with him injecting tiny amts then ever increasing amts till I could tolerate them--about the 3rd or 4th week of full injection dose my face swelled, needed benadryl and then Pen became a never again

as for Evan he finally outgrew the hypersnesitive thing by age 2 and the GI issues by age 6, but always has a LOT of infections--ear and strep etc

at age 18-24 mo there was a tick bite--wrist and immediately removed but no sx and they refused to treat--back then I didnt blink---at age 5 no bite BUT he suddenly got swollen knees and couldnt walk--this time I insisted on amoxil and 4 weeks into it he worsened,then they tested him and he was POS for Lyme!! so he was put on another 4 weeks--back then ( 13 yrs ago)- again I knew less and "they" thought that would be enough.

and from age 6- till about12/13 he was ok--nothing major and even less infections

around age 12/13 he became ill--a lot of sx,over several months and finally I had him tested simply based upon his and my history--he was myco positive!! so we treated for that and after about 2-3 months seemed fine and we stopped meds..that summer he traveled with People to People to greece and italy etc and other than 1 episode of heat exhaustion ( hottest summer in 10 yrs there) he was fine--he retuirned home, tunred 14 and started 9th grade

within 2-3 months he had again a lot of absences and sx..had him again tested and he was myco and I think equivocal for Lyme ( never fully positive) BUT based on history and sx we tretaed--hit it hard with a LOT of drugs...he got very bad and we went to immunologists--found him to be very low IGG and IGA and so we began trial of IVIGG and he improved over summer, finished 9th grade with home tutors and a few times was even able to go to school between may and June. by sept of 10th grade he wasnt great but ok--and returned to school.

but by october he had a lot of illness again--semmingly his immune system plus the Lyme--this time he had sx of Bart too--streaks and all ( upper arms, abdomen)--and based upon my own positive of Bart about 6-7 yrs ago when they woke up andd started to accept it as a coinfection, we figured maybe that too was gestational for Evan.

anyway he never fully recovered since then--he finished 1/2 of 10th grade and stalled---he isnt well enough to consistently work on anything even with home tutors-and his memory is shot as well as his working cognition--he has gone from an 11 yr old who was gifted and scored over 1200 on the SAT!!! to reading a paragraph in a sports mag and not recalling what he just read!!

he is very discouraged..we want to do IVIG again as that was his best recovery along with combo drugs but they keep saying "not low enough" now--his levels I mean--theyr not abnormal enough whatever THATs supposed to mean AARRGGHH

he tried Buhner herbs and Zhang protocol plsu accupunctue and lymphatic massage and PT ( 2 kinds),etc as well we tried recently Percoba cow colostrum that did SQUAT

so here we are--the last 3 1/2 yrs housebound and nealry bedbound--all his friends have disappeared years ago--some assumed aids others thought he moved and the few that DID know better grew tired of him being to ill to go out

he is on Omnicef and tinidazole( a combo we hadnt yet tried) and I also started him on LDN--low dose naltrexone--he has ramped to full dose only 3 days ago so we dont yet know what thatll do--but after a few days of even lower doses he adjusted his sleep cycle back to normal, and appetite improved!! so fingers crossed

Im basically up to 40-50% functioning physically and he I guess is at 30-40%

also we both have dysautonomia--a genetic tendency triggered by the infections--which is inability to control heart rate and BP so we often are near fain ting--and I have EDS--copnnective tissue disorde which makes my dysauto much worse as well as a host of other stuff--I have cardiac involvement but so far (knock wood) he doesnt--the dysauto for him is the nervous system relays and blood vessel distension/stretchyness

and we knew from MRIs we both have Chiari--where brain sits too low in skull and until recently thought nothing of it--Drs dismissed it yadda yadda well, turns out SOME of both our sx may be due to that and in July we will be going to a specialized hospital to evaluate whether anything can be done and maybe some sx improved

in 2 weeks we both have to endure a 10 hr car ride to Ohio to follow up with dysauto specialists--we cant fly--pressurized planes arent tolerated by many dysauto's--and the car ride makes us both very ill to boot-

there are only a handful of specialsist in this field so we have no choice UGH

when you have a lot of conditions and they overlap its hard to know what causes what and what makes which worse!!

so thats our story

( Evan stalled mid 10th grade and I never finished the PhD--I was EBD--everything but dissertation) I do get to keep my masters in embryology and certs in science education trianign tho and my 15 plus yrs as a patient advocate..LOL)

please do NOT take my story to be an example for you--we are a product of lack of medical knowledge, lack of medicine knowledge and about gestational transmission,all from the Dark Ages of Lyme--and genetic immune system snafu ( Evan) and possibly genetic tendencies for other stuff--like the dysauto etc

YOUR son was dx in good time and has the benefit of all we have learned since then!!!

Id suggest a good LLMD, and keeping him on meds as long as sx and then a bit past that--plus nutritional bossting with good diet and supplements as ok'd by the Dr and you will find great advice from Dr Jones--he really cares about "his kids".

keep us informed

Finette

To hear about you and your son and all you have endured...it breaks my heart. I pray that you will both find yourselves in better health soon.

You have obviously done a lot of research on Lyme. Do you really feel that my son might have a chance at beating this? So far, he has no symptoms that I can tell. (He is only slightly anemic...LLMD thinks it could be from Lyme or a co-infection, but pediatrician thinks it's just low iron). He's been a completely happy, healthy, normal baby since birth. He's had a few bouts of colds (not more than any other baby, I don't think and he recovers from them quickly. I am so desparate for hope that we both can beat this and move on with our lives. Do you know of any babies that have had congenital lyme (or lyme through breastfeeding) and went on to live normal lives into adulthood without relapses? I just want a cure for him and myself. I don't know what to do. I'm so scared.

I am more confused now. So is Pencil. good? I guess the question is was she herxing or is she maybe allergic to pens? Your explaination was way over my head. I hated science! Now I'm trying to understand it but my brain doesn't work that way. Could you explain it again for science dummys?

Also what is sx and sx bart. I get very dizzy when going from sitting to standing. I have fallen over a lot. I just thought it was becase I had low BP? What do you think?

Also, do you think zithromax MWF is a good start for my 2.5 yr old. How will i know she's herxing? It's so hard because she can talk but doesn't understand what is happening to her. She probably thinks its normal since she has had many of her symptoms since birth.

you and your son absolutely have a great chance to be well!!! as long as you have the power of information, a good medical professional and hope!!

as far as Lyme via breastfeeding: while thay can show the spirochetes in milk NO one can say that if swallowed while feeding that they infect, they are more probably digested. The life cycle of the spirochete may mean it has to go thru stages first before reinfecting a host/victim

and yes I know a few babies who were probably gestational ( I never say absolutely positively gestational --even with Evan--as we cant "prove" it)--But they did go on to be "normal". Ive persoanlly known a child who eneded up in a wheelchair and VERY neuro challenged unable to even feed himself at age 10, after 3 years of treatment got better and today ( maybe 6 or 7 years later)is Normal!! a B student and into sports too!!!! Ive lost touch with them but I havent heard otherwise

try to post on the Lyme Aid Parent site many there can tell you about those they know too.

as for "cure" I always say its "possible" but I myself like to think of it as "living with permanent remission"--we go about our daily lives living with all sorts of bacteria hijackers ( some are good like acidophilus, others arent good or bad and some are even bad but if they behave themselves they cause little harm)

So eradicating every last bacteria isnt only impossible but impractical and even unnecessary!! Dont get hung up on "am I cured yet"--concentrate on " am I feeling ok and can I live my life"--THAT is the ultimate goal for you and your child!! and that Im sure is within your reach!!!

ldsucs ( I like your name ]

No one drug is "best" but there are a few that seem to work better than others. Penic.--it will eradicate Lyme, is better if its early Lyme and it depends upon symptoms too ( neuro symptoms may need a different approach)

then there is IM ( butt injection) vs oral--all different in how well theyll get into blood and brain.

and for the coinfections there are definite drugs to use ( like for Babesia you want a drug that kills that kind of parasite like Mepron)

Herx vs allergy vs intolerance to meds

a very complex question

the easiest way to say this--we cant tell many times!! (sorry)

its often a pattern and the kinds of symptoms that help us make an educated guess

IF symptoms worsen (or new ones appear) within 30-90 min of taking a drug it is probably more likely its the drug.

If symptoms worsen about 2-4 hrs later, and as time goes on( after days of being on meds) they lessen, it is more likely a "herx".

as for type of sx: facial swelling, trouble swallowing, hives, rashes,severe vomiting, severe and/or bloody diarrhea etc all need immediate medical attention

to assess cause and what to do.

Penicillin allergy is usually quite severe and also dangerous--but if like me you get vague sx and then some facial swelling, then before taking it again Id recommend an allergist for testing to be sure. Pen is funny in that each later time the reaction gets worse!!

and some with Pen allergy cant do cephalosporins--but some can--and it does make a difference which ones too--I cant take a few but am ok with Suprax!!!and Im VERY Pen allergic!!

if at any time you arent tolerating a medicine that the Dr (and you) think may help you--try to get it in liquid/suspension and start with tiny doses and slowly build up--that trick saved me and allowed me to get used to Minocycline and this past week Levoquin for Bartonella!!!

also learn the HALF LIFE of your meds--google " half life of suprax" or whatever drug

thats important if you have a bad reaction youll know how long before the sx should go away!! ( it takes about 3 half lives to get rid of almost all of any drug, longer if it has a long half life)

I am so sorry about my abbreviations--I use them to type faster before MY dizzies get worse--sx = symptom and Bart = Bartonella

we have a list of abbreviation here I think its tagged...maybe on tips?? or on support or important information??

If you think you have BP problems it may be a good idea to get a home cuff ( a good wrist one is easy--just have a Dr or other person check it against a standard one)--IF you do experience drops and wide ranges Id suggest you look up "dysautonomia"--MANY with Lyme find they develop it--it may go away or stay with you forever

national dysautonomia research foundation is at www.ndrf.org

they have a lot of good info

I cant give medical advice as Im not a credentialed health provider and I dont know your child's history or medical situation so all I can tell you is to ask the Dr treating her many questions:

why this pattern of meds

what he hopes to accomplish and when ( for example a better appetite within 2 weeks)

Are there other things to try

what side effects to expect

I can tell you that Zithromax has a high half life ( the time it takes for half to leave the body)

so you know- its about 68 hrs!!! thats 3 days!!!most meds leave the body in far faster times.for example for Suprax its only 3-4 hrs!!

that may be why she is on 3 days a week!!!

as for how you will know when she is better or worse, I have confidence that as her Mom you will know!!! May I suggest a diary or journal--it can be very simple--I use a marble composition notebook so no pages are ripped out

Every day write the date on a page and then once or twice a day write a few lines describing her behavior and what she took(meds and supplements), how she slept/napped, and anything unusual or different ( even if she seemed cheerier for an hour)

this way you can look back in a week or month and see what if anything has changed ( good or bad) and help the Dr gauge her treatment!!Id also put her appetite/meals to try to keep track of her nutrition. Is she eating well, etc

also be aware that Herxes may pattern--Lyme tends to reproduce every 3-5 weeks and meds work best during when theyre reproducing--so Herxes often have that pattern and then each Herx hopefully gets better...Bart is a more gradual improvement ( a different repro cycle and not much endotoxins--the "poisons" inside a bacteria the burst out and cause a Herx) Babs varies ( babs= babesia)

Im unsure if the anaplasmas ( used to be called Ehrichia) Herx or in a pattern.

I know exactly what you mean by thinking bad is normal...Evan last summer had a 3 week period of no headaches and he came downstairs one day and said " so this is what having no head pain is like...weird..."

If you have any other questions, feel free to ask and Ill try to explain or point you to a good source

good luck

Finette

I'm sorry that your 2.5 year old tested positive for Lyme. I'm glad to hear that treatment is going well. I am praying that your baby is healed quickly. My doctor has my son taking amoxicillin for his Lyme. Are you sure that your baby's reaction to the amoxicillin wasn't a herxheimer reaction from bacteria die-off? We have not had his CD 57 checked. I will ask my doctor about this test at the next appointment. My son does not have symptoms that I can tell. He has had his share of colds, but I don't think any more of them than any of his Lyme free friends. He gets well from his colds on his own without anitibiotics, etc... In fact, he's never had antibiotics except for now for the Lyme. It's kind of weird. The only this is he has a very slightly low hemoglobin count which his pediatrician has him on iron supplements for. The Lyme doctor said a low iron count could be from Lyme (or co-infections).

Thank you. You are a wealth of information!

mammabear

Thanks! You know a lot and are really helping us newbies out! Thank you so much!