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Lyme Disease Support Network

Newly diagnosed looking for LLMD on Long Island or NYC


#1

JUST DIAGNOSED I do have a positive test for Lyme Disease. I am getting additional bloodwork for the co-infections also. The doctor prescribed Doxycycline Hyclate 100 MG twice a day for 30 days. Please let me know if you feel this is sufficient or it should be longer. He is also sending me to a neurologist to see if there are any neurological signs that are concerning.
Thank you,
Gail

Lyme Disease AB, Quant, Igm 3.17 reference range 0.0 - 0.79
Lyme Igg.Igm Ab 1.16 reference range 0.0 - 0.90

Lyme Igg Wb Interp. Negative

Present:
Igm P41 Ab.
Igm P39 Ab
Igm P23 Ab.
Igg P39 Ab.
Igg P66 Ab.
Igg P23 Ab.
Igg P39 Ab.
Igg P41 Ab.

Absent
Igg P93 Ab.
Igg P18 Ab.
Igg P28 Ab.
Igg P45 Ab.
Igg P30 Ab.
Igg P58 Ab.


#2

Hi Gail, welcome to the community! I am so sorry to hear that you aren't feeling well, but it seem that you are getting good care so far. Unfortunately, you'll have to endure your round of doxy, and then give it a few more weeks to see how you are going to feel before making any further treatment decisions. If you find that you're still having problems after that time, then it may be time to look at options for treating PTLDS. Keep your fingers crossed tha tthe initial abx will work wonders for you!


#3

Thank you for your response. I am still more tired than usually and have joint pain. At least no fever or chills. Ido h ave hot flashes but that can be age related. By looking at my blood work would you think that I had a prior case of Lyme? I know I meet Igenx requirements but not the CDC for a prior case, only a current one. It is so hard to figure out what symptoms may be Lyme related versus other health issues. I was diagnosed with RSD/CRPS a few years ago. I also have arthritis and degenerative disk disease with issues in my neck and back in fact my neck is fused. My feet burn on and off and if I put sneakers or closed shoes that makes the situation even worse. My toes become like fat sausages; swollen and burning. I was told that was the RSD but I am hoping that it is Lyme related and might go away. I took the co-infection blood test after being on the antibiotics for 3 days. The test was negative and I am hoping that it wasn’t a false negative. I am having an issue with the bottom of my feet being very sore upon waking which I saw may be related to Bartenello. My brain MRI came back generally fine; just small veins so I need to be aware of that. thanks again for your response


#4

Do you see a rhuematologist regularly? A lot of your problems could easily be attributed to an autoimmune disease. That would be far more likely than a coinfection. Coinfections are incredibly rare. Honestly, I would follow the CDC guidelines for treatment. IGenex labs tend to lead to unnecessary antibiotic treatment. It’s far more common to have an autoimmune condition that was preexisting or related to the Lyme infection’s damage to the body.


#5

@GrumpyCat you are misleading @frenchfri completely.

coinfections are extremely common and the only reason I was able to get doctors to help were positive results to confections as the Lyme tests were negative. I tested positive for bartonella, erlichia and others. And the CDC testing did not show results for Lyme as it doesn’t provide the full array of bands for proteins for the version of Lyme I have. I had to be tested at Igenix where they test for a wider array of bands associated with the myriad of types of Lyme versus the 20 year old out of date CDC criteria.

I tested positive with igenix with 90% on the Lyme which is huge! I also tested positive for multiple other coinfections including babesia. The igenix lab runs it over a two week period and does multiple screens. It’s the doctor who will be responsible for years of antibiotics versus the lab test - so please stop squashing this resource as it is essential for diagnosis. I have had Lyme for over 10 years and spent over 80k on testing for everything under the sun to explain all the issues - and each doctor had an opinion. And having it for 10-15 years is tragic as it has run rampant, and caused me no end of losses in my life. The cdc is antiquated and is leaving hundreds of thousands of people without proper diagnosis. The first level of testing - the western blot is 70% innacurate and when results are negative they don’t go on to do the ELISA. I convinced the doctor to do the Elisa coinfections first which is how I at least got the bartonella diagnosed.

I recommend you study one of the most comprehensive resources I have found and what has become one of my guiding resources http://treatlyme.net

He has videos that talk about all of this. Unfortunately he put a subscription key on it so the videos may be found on Facebook and YouTube

Amy