posted
I am soooooo upset right now.. Long story short. I used to post on here years ago. My story is that I passed Lyme onto my unborn daughter. My daughter saw Dr. J and I saw another LLMD. After three long years my daughter and myself were doing just great. That has been almost five years..Then on friday she awoke with a classic bullseye. Called the "new" family Dr. We just moved here to Lancaster County, Pa from out of state. I gave him all my daughter's records from Dr. J. and her old peditrician... Guess what??? Another Dr. that doesn't know anything about Lyme. First he looked at the picture I had taken of the rash on day one. He said Children usually get a red rash, not the classic bullseye. That is only found in adults.. Then he tells me he wants to do blood work and then wants to wait for the test results... . I asked him about the test not showing positive this soon. He said then it's a wait and see. If my daughter gets sicker over the next three weeks to call and then he'll see where we go from there. OVER MY DEAD BODY! We have seen Dr. J. in Ct. several years ago like I stated, but my husband had been layed off for a while and now has taken a position that is MUCH less than what he made before. I'm a SAHM and have no way we can pay for the trip alone to Ct. let alone the office visit with Dr. J without losing our house. If anyone knows of a LLMD in Lancaster County area or within three hours of PLEASE CONTACT ME!! Here we go again!!!!!!!!!!!!!!!!!!! I am beside myself... If anyone would like to see her rash and weigh in please give me a hollar. I don't think I can do this all over again with her and ignorant Dr.'s.. Like I said before when she and I was sick $$ was no object.. Now, it playes a huge part. If I can't find a Dr. that takes insurance I don't know what we are going to do.
Posts: 6 | From Mount Joy, Pa | Registered: Sep 2005
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Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
Hi Colleen, i remember you. i'm sorry to hear your daughter has been reinfected. my son was reinfected a 1 1/2 ago, before he was even cured of his original congenital lyme, and now has mycoplasma fermentans, and school has given us a hard time.
how about looking into angel flights for transport to New Haven? we live in Yardley , PA, and make the 3 hr drive. we have taken Amtrak when my husband could not take off from work, but Amtrak is so expensive. wish thier fares were less, we would take Amtrak more often.
i have a friend from CA who takes Angel Flights to get her children to Dr Jones. we have been paying out of pocket for our appts. with Dr Jones. it is expensive, and i have not been able to work for 14 yrs due to disability from lyme/babesia, but unable to get disability due to what drs did or did not put in my records. they go by dr records when making their lame dicision, won't consider my photos and what really happened to me.
it has been hard, but, we are not in as dire straights as many others. we have not asked dr Jones to work out a payment plan, but when we first went to him, things were pretty bad for us, and he was able to get funds from (?) can't remember what this is called, but it is a fund for lyme children whose parents can not afford to pay for all thier treatment. this was able to pay for the Bowen test to be done on both of our children that we at the time would not have been able to afford.
i know that dr Jones does not turn away any child regardless of ability to pay, and their is the fund for Dr Jones patients who can not afford treatment, someone here ( or Ziggy at www.wildernetwork.org ) will know more about this.
i'm sorry your husband is not taking the same attitude this time around. men just don't like to face up to this. when they are helpless to make something better, they just seem to not want to see the reality of how serious things are.
at one point i discovered my husband was not making sure my son got his abx in the morning. he had decided on his own that my son had taken abx for 2 yrs and by that time had lost thier affectiveness, and he is fine now, and does not even need to see Dr Jones.
ARGHH!!! he is more realistic now, but still sides a little with the school that behaviour stuff from mycoplasma was more "psychological" and counciling is needed to help him with these behaviours. the school put him in a class last yr with mildly retarded children dispite he tests in the 99% of 4th graders in the nation. did not tell us he was to be in this class until 2 days before school started.
he is in a different school this yr i just found out, but is supposed to be a normal class and they are testing him for gifted classes. still, he learned nothing last year.
most of the behaviour stuff was from him being reinfected and now having mycoplasma fermentans and the school, especially the school nurse chose not to take the info on tick borne diseases and how they affect children, remained ignorant, dealt with my husband ( i ws too sick ), who is overworked, doesn't do the research i do, instead of telling me his symptoms suddenly increased. school nurse was downright hostile when 4 yrs ago i offered her info and the "ABC's" of lyme pamplet.
what a nightmare! but i know that if you can't afford to pay for your daughter's appts., Dr Jones can work things out. also, i have a very good llmd in Jackson, NJ . she , her late husband ( a pioneer of long-term abx treatment for late/chronic lyme - who died a couple of yrs ago from complications of lyme disease ), and her three children all have lyme. she does see children. she does not take insurence, but does take some medicare (or medicaid?) cases, and is not as expensive as some other llmd's. 1st appt. $250., follow-ups, $100. let me know if you want her name. email: [email protected]
i can't believe that this nightmare is still going on. long gone are the days they can claim this is a mild, rare, easy to treat disease whose outcome is "excellent" and only requires 10 days of abx treatment and "some drs" treat with too many abx, as the website of a pediatric infectious disease specialist who perrenially wins "best pediatric i.d. specialist in phila. and NJ magazines had on her website.
her daughter was in the same class as my daughter in the small private quaker elementary school we had to send my duaghter to due to her behaviour problems from her un-dx lyme and babeisa. would have been nice if she let us in on what was making us so sick, and what almost killed me. what animousity i got from this horrid woman. i was a threat to her "steller" reputation. harming children for money. creepy skanks!
since we cannot find any drs in network who understand and are willing to treat, insurence co's should be forced to pay for the out of network drs who are actually practicing REAL medicine. of course, insurence co's don't see it this way, and the pharmeceutical co.'s don't care, because keeping us sick with false dx, sells lots of drugs for them. but we know this already. awareness, and our stories done in the media is what will bring change.
please look into Angel Flights and also the fund for lyme children. i know you should be able to get some help there. again, sorry your little one got reinfected. did she get bitten in PA? my son got reinfected in our own neighborhood which is between the river and canal, and lots of deer. this area is sooooo bad. most of the people we know here have lyme ( or un-dx symptoms ).
i know of several people besides me who almost died from it. and too many children with obvious symptoms. so many of the un-dx but thier parents are not listening to me. you would think that a parent , whose house backs up to woods where articles have been written in recent yrs about the high incidence of lyme in and around the park, but won't have thier child tested. prefer the "great" local drs dx of autism. too many......
Posts: 1093 | Registered: Nov 2000
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
Im not sure how updated my list is at this time, however here it is 1. Miracle Flights for Kids: 1-800-359-1711 Provides fare for one parent and child 2. Angel Flights: 1-800-352-4256 Provides air fare for both parents and child 3. American Airlines: 1-817-963-8118 Debbie Ryan AA gives twice-in-a-lifetime free flights for child and both parents 4. Southwest Airlines: 1-214-792-4103 Tracy Martin Provides two flights per year for child and both parents 5. The World Life Foundation: 1-800-289-5433 6. National Patient Air Transport Hotline: 1-800-296-1217
Posts: 1918 | From Central, Oregon | Registered: Apr 2002
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
Im not sure how updated my list is at this time, however here it is 1. Miracle Flights for Kids: 1-800-359-1711 Provides fare for one parent and child 2. Angel Flights: 1-800-352-4256 Provides air fare for both parents and child 3. American Airlines: 1-817-963-8118 Debbie Ryan AA gives twice-in-a-lifetime free flights for child and both parents 4. Southwest Airlines: 1-214-792-4103 Tracy Martin Provides two flights per year for child and both parents 5. The World Life Foundation: 1-800-289-5433 6. National Patient Air Transport Hotline: 1-800-296-1217
Posts: 1918 | From Central, Oregon | Registered: Apr 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
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emailed
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