posted
I've been ill for over a year. It all started to come to a head after I had knee surgery, December of 2012.
I am on the cancellation list. I'm hoping they will call me sooner.
I never saw the tick bite. I always get bug bites that swell and get a big ring of red and purple around it. The bites hurt and itch at the same time. I really hate bugs!
Posts: 29 | From 42.782745, -71.280301 | Registered: Apr 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I know a lyme doctor who can give you an appointment in a week or 2 right now. However, you don't say what part of the country you are in.
You might want to put your location in your profile. Right now you just have numbers there. See below your post.
Let me know if interested. You can do phone appointments so you won't have to travel to Maryland every month for your doctor's appointment.
He follows the Burrascano lyme treatment protocol which is what you want.
Then switch to the doctor you are currently waiting for once your appointment at the end of October arrives.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I live in New Hampshire. Sorry for the coordinates. I felt the most the comfortable with coordinates vs giving my location in words.
TF, I'm grateful for your offer but a little uneasy about it. I have sooo many questions and would like to meet the doctor face to face.
I like to read a person's facial expressions and body language when I speak to them. Everything needs to be in sync. Forgive me but I'm a skeptic at heart:)
Posts: 29 | From 42.782745, -71.280301 | Registered: Apr 2014
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posted
Hiker .. So have you met the Dr you will see in August??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You have to go in person to the first appointment. So, that is a trip to Maryland for you.
It is the monthly follow up appointments that can be done by phone or skype. But return trips to Maryland are required periodically.
This is how many lyme doctors help people from other states and other countries.
At least half of all lyme patients go out of state for their treatment. A lyme patient has to be willing to travel because lyme doctors are few and far between.
Why not try to find a lesser doctor nearby while you wait for your appointment with your doctor of choice in October. That is what we all have to do unfortunately.
That's what I had to do over 12 years ago when I was starting out. I have been cured for 9 years now. The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough.
I also know of a lyme doctor in Plattsburgh, NY who, I am told, can see a person in 2-3 weeks. Let me know if you want the name.
Contact the lyme support groups in your state for additional names of doctors. See Support Groups on the left side of the page.
Contact those in surrounding states also.
Find one who can see you within the next month and get started on treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
NH Hiker If you really have LD do not wait 5 months to see an LLMD without starting treatment. You may pay dearly and this disease just progresses further. You should buy some antibiotics on your own and start treatment. I waited and I'm paying for it for sure.
Get started before you see LLMD.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
Lymetoo - I haven't met the doctor yet. He was recommended by my PCP. I begged my PCP to treat me but she said I needed a doctor who specializes in Lyme, because it is a complicated disease.
TF - I didn't realize just how complicated all of this really is. The NY doctor is the closest to me. What happens if the doctors use different protocols?
Bigstan - How do you buy antibiotics without a prescription? I didn't know that was possible. What happens if I have an issue with it?
I had two Lyme tests done, both came back negative. My PCP suspected Lyme. I had the basic lyme panel done at Igenex, results as follows.
IFA, B Burgdorferi G/M/A >80
IgM
23-25 + 31 ++ 34 IND 39 IND 41 ++ 83-93 IND
IgG
41 IND
lostlyme - I filled out the paperwork for the LLMD. One of the papers was to release my records. Is there anything else I need to him? I will bring him the Igenex report.
Posts: 29 | From 42.782745, -71.280301 | Registered: Apr 2014
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
HN Hiker you have been given excellent advice by those who know first hand that waiting until October is really a bad idea. The faster lyme is treated, the better the chances you won't suffer long term damage.
Keep your appointment for October but by all means do anything you can to get in sooner with any LLMD or lyme friendly doctor and start treatment. Any treatment is better than no treatment at all and it's not at all uncommon for patients to have to travel long distance for the right LLMD.
This is routine for Lyme patients. We all do this and there is no guarantee that the LLMD you see in October is going to be a good fit for you nor that he/she will be the one who you will ultimately stick with. Many of us have seen many LLMD's before we find the right fit and sometimes it's necessary to do so to get well.
There is no one size fits all treatment with this condition and it is often the case that we see several LLMD's before we get on track.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Waiting is a bad idea. You have a +31 on your W. blot. Don't worry about if protocols are changed. LLMD's change protocols all the time on purpose to switch it up on the bugs.
posted
Burrascano guidelines page 17-18 antibiotic choices. Tells you dosage and meds. There are ways to get antibiotic without script, if I had known this in 07 when I first started I would be a lot further now.
Fishbiotics is a way. Don't laugh same stuff pharmaceutical grade. Or you can at least go the herbal way research Stephen Buhner, or Cowden protocol.
The idea here is to at least stop the progression by starting something. And remember the herx effect once you start.
KA
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This post explains the Western Blot test and each of the bands on the test:
This post and many other eductional posts for new people can be found at the top of the Medical Questions forum under the title "Important Information on Lyme and Cos"
The Dr. Joseph Burrascano Lyme Treatment Guidelines is also the top post in Medical Questions, or you can read it here:
This document is a difficult read because it was written for doctors, but it will give you your education on this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You can also do Buhner Herbs in the interim. His books are good.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
NH_Hiker there is a lot of good advice here.
You have positive and indeterminate results on the Lyme-specific bands of the Western Blot. This is very significant. The CDC requires several bands to be positive for the test to be positive; however, most people who have Lyme do not have this many bands. Having any Lyme-specific bands show up is significant.
Posts: 4682 | Registered: Oct 2000
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