posted
Hi all! Thanks for reading...will try to keep it short. Been terribly sick since 1994, dx with Cfs, fibro, and about 20 other diseases. Have never had a remission and symptoms just keep cycling from one system to the next and a whole party is had. Tested high positive for Lyme in 1996 Western Blot...did a month of IV antibiotics and that was that. Been testing on Quest labs just positive for band 43 IGG and IGM until now.
Symptoms have gotten as severe as they ever were in the 90's and we tested again for Lyme Thru Quest. Bands 23 and 41 both IGG and IGM positive as well as a positive Lyme IGM, but negative Lyme IGG. Even the Mayo Clinic agreed that I did have Lyme in the 1990's and it took them 2 days to decide whether or not I still had it back in 2000.
I have multi systemic problems from my brain to toes, disabling and unbearable most days. From what I read, band 23 is Lyme specific? Is it time for me to take the leap and finally see an LLMD for further IGenix testing? I can't go on suffering like this. Also, I'm in NY...who should I see? After all these years, I need a great dr, although I''ll have to find money somewhere. Thanks so much for any info/guidance you may have!!
[ 10-21-2016, 06:33 PM: Message edited by: HopefulNY ]
Posts: 22 | From NY | Registered: Jun 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
It is very important to protect your privacy for multiple reasons--I'm on a short time frame now, but can explain later and will also do my best to answer your questions.
For your own best interest, I recommend you remove your real name from the signature.
Best.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
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Looks like you removed it already. Good!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
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posted
Absolutely, I recommend you see a qualified LLMD ASAP. Create a separate post asking for LLMD recommendations. Most people on here are very knowledgeable. You don't want to go to just any LLMD.
I'm sorry you are suffering. Hugs.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Dna connexions has a pcr urine test you can order without a doctor...ifbyou need further testing ...band 41 means flagella and no good bugs have tails ...
sorry welcome ...i suggest buhners books and bvt are cost effective means of treatment ...i just met a apitherpist in ny if wanna pm me ...dr h is the best but i dont think he is accepting new clients ...if you can make it to jemsek clinic .but aint cheap ....welcome again
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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I've been sick for over 20 years, so I really need a good dr at this point. I'll call Dr H to see if he's taking new patients. Has anyone heard about Dr C in NY? My internist recommebded him.
Appreciate you all so much🌻🌻
Posts: 22 | From NY | Registered: Jun 2015
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posted
What do you all think about an LLMD who doesn't do testing? It makes me concerned because I really want to send blood to Igenix in CA, and the nurse on phone said they don't use testing...only history and symptoms? Does that sound messed up to anyone? I'm new to this, this is from a well known dr's office?? Thanks!
Posts: 22 | From NY | Registered: Jun 2015
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me
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posted
That concerns me. Though Lyme can be diagnosed clinically (without positive test results), I have never heard of a LLMD NOT wanting to do testing.
A good LLMD will want to make a differential diagnosis (rule out other things/see if other health problems are going on). IMO, I would find another LLMD. That sounds off to me.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
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Also, I recommend going with a LLMD who people within the Lyme community (like us) are familiar with. You can create a separate post seeking a doctor. I see a good doc in MD. I travel once every four months to see him.
First appt in person, next two via phone or Skype, next in person. Repeat. He can get you in pretty soon and is well-respected in the "Lyme World".
Dr. H is not accepting new patients. Even his wait list is closed.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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TF
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Member # 14183
posted
Dr. C is well known, but the reviews on him are very mixed.
If it were me, I would want someone much better than him. If you are willing to travel to Maryland once every 3 months, I can recommend a good doc to you.
You would be in good hands with him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, Thank you! I can get there with a lot of help. I don't really have a good feeling about the way he treats, which is why I'm asking you guys. I'd really appreciate the dr in MD's name!! Should I post my email? Thanks!!!
Posts: 22 | From NY | Registered: Jun 2015
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posted
Me, thank you! Yeah he doesn't do any LYME testing. He does general labs though. Still I don't get why he wouldn't do any Lyme testing? Even though there isn't a good test...it's info.
I mentioned to TF, that since I am desperate for answers and treatment, I can get to Maryland if I have to, I would really appreciate getting the dr's name so I can call the office.
I'm afraid to ask about fees...ughhh. This dr in NY seemed fairly cheap...I have a feeling the others are much more. Getting my ducks in a row😱 Thanks so much for responding with a good dr.
Posts: 22 | From NY | Registered: Jun 2015
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TF
Frequent Contributor (5K+ posts)
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posted
I sent you the name and a lot of info about how he treats, his prices, etc. He basically follows the Burrascano protocol.
You will be tested by him for the various coinfections at good labs. Be sure to pay for him to look at your blood under his microscope. That is so valuable.
Let us know how it goes!
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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Member # 14183
posted
We use the private messaging system here, not email. You will see my message to you under "my profile" which you will find near the top of the page.
Posts: 9931 | From Maryland | Registered: Dec 2007
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