posted
My child has been under treatment for 9 months and is getting some positive results on tests for autoimmune disorders. We've been referred to a rheumatologist, Dr. G., on Staten Island, NY. Anyone know of this doctor? (This is not the well known Dr. G. in Central NJ.)
If anyone knows of an LLMD type Rheumatologist that handles pediatrics in NJ or Metro NYC, would be glad to hear the info. Particularly helpful if you know a doctor who is good with things like Lupus/SLE.
Thanks,
Lymepool
[ 06-25-2009, 02:18 PM: Message edited by: Lymepool ]
Posts: 170 | From New Jersey | Registered: Jun 2008
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losferwrds
Unregistered
posted
The is a Dr G Rheumatologist in central new jersey, she used to be president of ilads, still on the board, I went to her for bit, if your kid has arthrtic lyme she would be a good choice, I'm not sure if she does pediactrics
You can get her info in the seeking doctor and call her office
I found a doc in south jersey 15 minutes from my house that also charged less money, the only reason I changed was it provided a second opinion and I no longer have to take a 2 hour drive to the doc and miss a day of work.
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posted
Thanks for the feed back on dr. G, losferwrds!
My child has tested positive with bartonella, babesia, and RMSF. Igenex results just came back negative for Lyme. She has been on antibiotics and mepron/malarone for 9 months and is actually feeling pretty well.
No signs of arthritis; but we need to consider things like lupus, based on her tests. Your response reminds me that I should probably put that info in the subject line. I know some people with TBDs fall into arthritic conditions and others wind up with fibromyalgia and lupus type diseases.
Thanks again,
Lymepool
[ 06-25-2009, 11:44 PM: Message edited by: Lymepool ]
Posts: 170 | From New Jersey | Registered: Jun 2008
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WildCondor
Unregistered
posted
Many Lyme patients have positive ANA results and are told they have Lupus, when it's Lyme disease and co-infections all along most of the time.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, I was dx with lupus in '84 from high ANA tests. Years later, after some very bad steroids were prescribed, the real culprit was discovered: Lyme, Babesia and HME (Ehrlichia). I did not have lupus after all.
I hope you can find a good ILADS-educated LLMD who understands the ANA reaction in TBD (tick-borne disease) patients. I would not put much trust in a rheumatologist. They don't really believe or understand lyme or the other TBD.
posted
Thanks for responding Keebler, WildCondor, & Grandmother. I've read many of your posts and comments over the past year and have learned alot.
The LLMDs we are working with are ILADS members/educated. TBDs identified in August 08 through Igenix and other labs were Babesia, Bartonella, with questionable Lyme (pos 41, IND on band 39). Tests on erlichia, mycoplasma were negative. Initially predominant symptoms were Babesia.
Over the past 9 months, mepron/malarone, rifampin, doxy, bactrim, probiotics, and supplements have been used in accord with the Dr. B and Dr. J protocols. This therapy has turned my child from a bed ridden invalid to an active teenager.
Still having occasional fatigue and rashes.
Last week's Lyme test result showed band 39 as negative. Tests for rarer TBDs were positive for RMSF.
Thanks to all of the contributors on this board and rare gems who are ILADS-LLMDs, we are getting our lives back.
I have read many treatment journeys on this board, the long haul with multi-abx treatment and the persistence of these tbds in the body, can take a toll on the immune and other systems. There are others who can probably state this better than I, but if this disease process is causing cell destruction, then the body needs to go into an autoimmune mode to clean up the cell fragments. Hence the positives on ANA and similar tests. The LLMD said that positive ANA is very common with TBD, but we are seeing positive ACE as well for my kid.
The question becomes: at what point do we have to worry that this autoimmune activity gets turned on and stays on even after the tbds are gone? My family has a history (going back to the late 1800s) of rheumatoid arthritis. Others have shown signs of lupus. Lyme/TBDs are not the only causes of these conditions, so it is time to evaluate any other underlying issues.
So out of an abundance of caution for my child, I am in search of an LLMD/Rheumatologist (or at least not hostile to "Lyme")who has some experience in determining when an autoimmune response is turned on in a more permanent way. This is the recommendation of two ILADS practicing LLMDs who are infectious disease focused. Need a Rheumi focused doc to review this question.
Just realized that this is a lengthy message, so thanks for your patience.
Here's to good health and a good weekend for all! Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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Check out www.roadback.org for the treatment of autoimmune conditions with antibiotics. Many successful stories over there.
There is a poster SusanLyme/RA who has an LLMD/rheumatologist treating her (maybe the same one). She might be a good source for you. If you can't navigate the board over there, let me know and I'll put you in contact with her.
Posts: 984 | From San Diego | Registered: Nov 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
thanks for the link.I would also need to talk to the LLMD who knows about lupus.Very high ANA. I do not recommend rheumatologists at all, as they have no options for a cure. The steroids are too dangerous, they block your immune system always for 12 months.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Thanks for the link, Parisa! Very good info.
Posts: 170 | From New Jersey | Registered: Jun 2008
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tickbattler
Unregistered
posted
Just fyi...prior to treatment my husband and one of my twin boys tested positive for high ANA.
My son's ANA became normal after about 9 months of abx treatment. He still has some lyme symptoms after 1 year of treatment but is improving.
We have not checked my husband's ANA again.
Also fyi - my husband saw Dr. G twice and we were not happy with her approach. She did not make any clinical diagnoses of coinfections (which I knew he had and eventually later tested positive for) and was not nearly as aggressive with treatment as we would have liked.
Before my husband knew much about her, he had referred our neighbor to her and she failed to give him a lyme diagnosis.
This man had previously had the vaccine but also had lyme infections twice before and had many neuro symptoms and she still didn't even recommend lyme/coinfection testing. We were shocked and gave him another name of an LLMD. Now he and his son are both in treatment for lyme/coinfections with another LLMD.
However, (if she does see children) she may be good for the limited purpose of getting your questions answered, as I know she is a rheumatologist and has some knowledge of Lyme.
Hope this helps and I'm glad to hear your daughter has improved so much!
posted
Tickbattler... I agree about Dr. G. I live very close to that office, and my neighbors who have gone to Dr. G, were not diagnosed or treated correctly.
All LLMD's are in different camps as far as testing and treatment.
Most primary care physicians in my area will recommend Dr G. as they do not know of any better. Only good for treating cases with the classic early bullseye and joint symptoms.
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