posted
Hi everyone. I am worried about my old friend's son who is 3 years old. They live in Oregon now and have for about 6 months. In the past few months he is experiencing unexplained rashes that look A LOT like Bulls eye rashes, headaches, insomnia and vomiting.
My friend T has taken him to the pediatrician and he even had a CT scan but nothing can be found. He did have a Western Blot from Quest which showed the 41 band to be positive but Dr said that was "insignificant".
My friend is convinced her son's problems may be psychological because pediatrician said that it was a likely scenario because he "does not have a father and is acting out".
I want to tell my friend that I strongly suspect lyme to be behind her son's illness but I am overwhelmed as to how to approach her. Do I send her literature? Speak of my own struggle with it?
Do I send some links to stuff about Dr J? How would you approach helping a friend who now seems firmly convinced her child's problems are psychological that he may have a severe infection that could kill him if left untreated?
Thanks in advance for any guidance. This friend is very special to me and has helped me so much throughout my life. I would love to be able to assist her now. Jess
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
My LLMD (a neurologist) told me that Band 41 is indicative of lyme disease, oral spirochetes or syphilis. It is the most common borreliosis antibody. Some LLMD's consider Band 41 alone to indicate lyme disease.
Here is a printable flyer that includes information on pediatric lyme disease from the LDA
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is no MD who knows the truth about lyme in Oregon. They've been instructed to by the ISDA strongholds in the the state, especially at the top hospitals and the medical college - to dismiss all talk of lyme from any patient - ever.
Even children have been turned away after tick-bites WITH the classic bulls eye rash because "there is no lyme in Oregon."
Oregon It is one of the very worst states in which to need any care regarding lyme or other tick-borne infections. There are multiple instances of sheer medical abuse, ignorance and neglect - I know that all too well, personally speaking.
Your friend should connect with one of the support groups to get the names of the LL NDs - or get out of state to a LLMD ASAP.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
"Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines." (detail from a poster here who had trouble with a doctor who had claimed to be LL and an ILADS member but, after some time and money spent, it was clear he was not, not at all). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your friends also needs to be aware to keep their mouths shut about this to others. There have been cases of children being taken away from parents (or attempts made) who went out of state for treatment.
The parents need to be very well educated about this and keep quiet about it to anyone who could "report" them - regular doctors, teachers, neighbors . . . anyone.
This happened to someone I know in Oregon. Teachers "reported" the parents for long term treatment since the child did not get better right away and feeling so ill during the treatment.
Munchhausen's is a very real threat. Sad, but true. Just best to be aware to NOT say anything more, especially to the child's current doctors. Just leave them behind - AFTER getting a hard copy of that test and other records that may be needed.
Just say they are for "personal records" to be organized.
Sounds like your friend has sole custody, with "no father" however, if there is another parent with custody and they are separated or divorced, - they MUST pull together and become educated on this together.
- by Pamela Weintraub -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Psychological problems" (as the doctor leaves it) in a 3-year old? "Acting out"? Just how does a child "act out" rashes? And no kid likes to vomit. It's not an attention getting device for any young child.
The child's behavior - or more correctly, symptoms - is merely communication that something is wrong.
If your friend want to be a good parent, they must learn to trust their child and what their child's body is telling them.
Lyme and other Tick-Borne infections can cause all kinds of symptoms that fall anywhere on the AUTISM SPECTRUM (for anyone of any age).
Pass this on to your friends as another option to find the qualiifed LL doctors they need for full assessment:
Just zipper in the state name where you seek a LL doctor. To join for discussion, best to join in your own state. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Jessica:
I don't know how to help you with your friend BUT the Pediatric IDSA MD who wrote the paper on chronic lyme being psychosomatic in the NE Journal of Medicine indicated my daughters symptoms were psychosomatic and that she didn't have lyme disease.
We didn't know about the controversy then. When we finally had a WB with the readings she had bands 30 and 41 positive with others being reactive.
In 1986 Dr. Alan Steere developed the Centers for Disease Control criteria using symptoms and what is known as the Western Blot. The Western Blot is a measure of specific anti bodies against the Lyme borrelia.
In 1986 if one had symptoms and had one reactive band it was considered indicative of an underlying borrelia infection . The paper identified band 41 as typically the first one to be reactive.
(The research paper issued was Craft, Fischer, Shimamoto, Steere, Antigens of Borrella burgdorferi Recognized during Lyme Disease).
This was followed up and supported by another paper in 1988.
However, by 1993 Dr. Steere and the CDC felt Lyme disease was being over diagnosed and over treated.
(Steere AC, et al. JAMA. 1993;269:1812-1816)
In 1994 at what is known as the Dearborn conference the CDC established ``surveillance'' criteria based upon research published by Dr. Steere and Dr. Dressler .
Band 41 indicates the presence of a spirochete bacteria.
Long answer but you are on the right track.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
posted
Thanks so very much everyone for the responses. Jess
Posts: 870 | From ct | Registered: Nov 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Rather than send your friend all these individual replies, you might just send this thread's URL so they can follow the discussion for themselves (herself).
They can better connect to the links posted, straight from this thread - less copying & pasting required. And you don't have to constantly follow it, she / they can - or just pop on for easy study.
The sooner she / they can find a lyme support group near them, the better. I hope that she will be able to find some sort of good advocate or "guide" from such a group.
You may not be comfortable sharing just where in Oregon she is - but if it's okay with her to do so, someone here who may be close might be able to offer some specific guidance, too. Oregon is a huge state. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LymeToo recently posted this EXCELLENT short introduction
- explains the controversy and suggests the documenary "Under Our Skin" - linked in threads above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Well i wouldnt say the infection might kill him.. Thats being a bit of an alarmist. I would just email her this link and have her look up the symptoms. www.canlyme.com
The site now shows the different rashes that appear with the illness.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic