posted
Hi all- I am seeing LLMD in Jan and was wondering if it is worth me asking for testing for coinfections? If so, what labs do you recommend? I was tested through Quest with all negatives. I feel like I have Bart and maybe Babs. Not sure though. I do want to KNOW before treating, but I know that isn't always possible.
How useful are the other labs tests? Worth the $? Symptoms are: GI pain, nausea, diarrhea, headaches, fatigue, muscle pain, severe nerve pain in legs, tingling, twitching, heart palps, low level anxiety, neck pain, neck stiffness, back pain, jaw pain, loss of libido, air hunger, throat clearing etc.
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Sounds like you have co-infections... my son's LLMD did what testing ins. would allow and then diagnosed on symptoms.
First visit with this LLMD? What do you know about him/her? Will they diagnose on symptoms? Will your insurance cover IGENEX? They are the best for testing.
I feel like the testing for coinfections is so unreliable and expensive that as long as the LLMD will treat based on symptoms the money is better spent on other things.
That's my opinion.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I am seeing Dr P in CT. Never seen him before so I am not sure- have just heard good things. I am not sure about my insurance covering Igenex... where could I find that out? I have healthnet in NY.
Do you know which coinfection it sounds like I have? Or would you think Bart and Babs? My worst symptoms are the GI, leg pain, headaches and general sense of feeling fluey-sickly.
I am pretty sure Dr. P will diagnose on symptoms, but that is sort of just speculation at this point..
Posts: 341 | From NY/FL | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Your symptoms sound the same as my son's. He has Bart, Babs and Mycoplasma Pneum... maybe more but that's what I know about.
Our labs came back IND for Bart and Babs... and weak positive for M.P. So really he is neg. for all 3 with conventional medicine.
My son's LLMD said IND is as good as positive with these labs. Weak positive... well it's positive - but they set the bar high so they don't have to admit there is a problem.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
They don't bill insurance... on this page, they state: "A statement will be mailed to you with information to send to your insurance company for reimbursement."
So if you have a phone number for pre-approval... you could call that and ask.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Thanks for the info Heather. Much appreciated.
Anyone else have opinions about coinfection testing? I am nearly broke because of my IV treatments and doctor appts (I am off everything right now with no doctor until Jan.).
I just dont want to waste money. However, I do not want to take meds that I don't need etc. I just wanna make sure I am hitting all infections and doing this right this time around.
Posts: 341 | From NY/FL | Registered: Apr 2010
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Remember to Smile
Unregistered
posted
Of course we don't wish to take any meds or supps we don't need!
All of the LD synergistic co-infections are best diagnosed clinically by an experienced, ILADS-trained LLMD.
If he/she wants you to get some blood work, ask why, then decide.
I think testing is over-emphasized. It's a major flaw in the US, relying on new technology instead of examining the patient and understanding their personal history.
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Let the LLMD guide you. I'm with Smile, a clinical diagnosis is sometimes best.
There are infections that aren't even tested for, that they don't even know about. So, what does one do about that. Clinical diagnosis, for sure.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thanks guys. I hope Dr P is good at understanding which coinfections I have. After 7 months treatment for Lyme and no change for the better, I am thinking I a) need more lyme treatment and b) probably have some other stuff going on...
From what I have read it seems like Bart is a big contender because of the GI involvement. However, I wouldnt say that I have significant cognitive or psych involvement.. except for some mild anxiety.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Get the HaemoBartonella test from Fry Labs. It's a blood smear and will show you a picture of your red blood cells. I believe it's around $300. They have a biofilm test as well, but I did not get that test done.
My Babesia test was postive and done through LabCorp. The test was for the WA1 IgG Antibody.
Western Blot for Lyme.
Posts: 829 | From MD | Registered: Dec 2009
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