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Finding a Lyme Doctor

Riders with Health Issues
#21

My symptoms in June 2010 were much more sudden and severe. Two days of minor neck pain, third day- severe headache, neckpain so bad I couldn’t turn my head or raise and lower my chin. Fever of 104. Went to ER and spent 3 days in the hospital. This was compounded by the fact that I also had mono- not that any of the doctors bothered to tell me or my Primary Care Doctor for 4 months. Those Lyme tests came back as negative.

August 2010- retest for Lyme showed positive. Tired, headaches and body sore.

I now have the same symptoms that I had in August.

#22

For those of you still suffering after being treated for Lyme (maybe inadequately, maybe not), find yourself a Lyme Literate doctor. Not all doctors know how to treat Lyme. Some don’t, some are too aggressive.

There is a good forum…www.lymenet.org. Some crazies, as always on an online forum, some knowledgeable people. It wasn’t really a help to me, but I found some really great doctors.

Fibromyalgia is a constellation of symptoms, not a disease. If you get the Lyme under control (and any addition co-infections, if you have them), odds are you will get the pain under control.

My daughter is a walking example. She was much worse off than I. In a wheelchair for a while, unable to do much of anything for months at a time. She now is a full time student (pre-med, not an easy course load), 4.0 average, works 30 hours a week and still has the time and energy for a social life.

Eight years ago she was barely functioning. There is help for you, you just have to be very aggressive in finding it.

And ultimately, remember, not everything is Lyme (but sometimes it is)

#23

Symptoms

Acute ( overlooked - thats another whole story)

Stiff neck
Tired
“flu” symptoms
Dizziness
Headache
NO RASH

Chronic
Tired, tired, tired
Stiff neck ( much worse)
Migraines ( daily)
Sore joints ( floating one day this wrist next day my ankle)
Sore feet ( ouch! When I got out if bed)
No temperature control ( really s$$cked in fl)
Pain ( and like most riders I can laugh at a broken bone and keep going) from all my old injuries.
Seizures
Brain fog
Paralysis on one side of my face
Loss of vision in one eye
Loss of feeling on my left side ( floating from my hand to the whole side)
Loss of concentration
Loss of short term memory
Did I mention tired???
Suicidal thoughts ( this was the worst feeling. " random thoughts of it would be easier if…, I wouldn’t hurt if… But the “rational side” of my brain could understand this was the “Lyme” talking)

I went to multiple Drs. Mayo, shands etc. Just to be told that I had RA, Lupus, ms, fibro, etc and to be handed Strong painkillers then when I refused to take those I was told it was " all in my head". For awhile I belived them, I had asked about lyme early on, just to be told Lyme didn’t exist in fl. When my stepmother asked about Lyme again we started researching. Mayo, shands again to be told chronic lym didnt exist. Long story but finally had a Lyme literate dr help, cheap antibiotics ( ok Mepron I don’t think is an antibiotic) later I am better. When I get stressed some symptoms come back ( migraines, stiff neck) but so far not a relapse

#24

Mayo is one of the worst places to go if you think you have Lyme. Hands down.

Stress, vaccines and an injury bring symptoms back for me. I just start a short course of antibiotics if necessary.

I did the Mepron/Zith route too…had to stop after two months. I ended up taking Malarone for 5 months which seemed to do the trick. Septra/Bactrim also made a huge difference in my treatment (probably hitting the Bartonella as well as the Lyme).

I always keep 2 weeks worth of meds on hand just in case. I had a relapse when I had my knee surgery 6 years ago and learned to be prepared in the case of surgery or an accident.

So far, I’ve managed to avoid vaccines. The meningitis vaccine set off my daughter’s Lyme spiral 10 years ago. It took 6 long years of gradually decreasing symptoms, but she’s pretty much symptom free. We both still tire easily. I used to be able to get by on 5 hours of sleep and I was the Eveready Bunny. Now I regularly need 9 and just don’t have the same energy. I can deal with that, though, as long as my mind functions as well as it does now.

We just watched Under Our Skin. Very interesting. I highly recommend watching.

#25

Laura- are you sure you don’t just teach high school? I think that has similar symptoms. :slight_smile:

Just wanted to add that Lyme disease is mostly carried in deer ticks- the tiny tiny ones. Larger ticks, wood ticks or dog ticks, do not carry lyme disease (recent research may have rebuked that- not sure).

In my area (NE), many horse/dog people routinely test for lyme. I won’t test unless there are symptoms, because at this point almost everything tests positive to some degree. I’m sort of wondering when testing people will become routine? Interesting thoughts.

#26

there is a doc in east hampton new york who is supposed to be the best.
he may be able to provide refs for your area.
and fwiw, google lyme and plum island to see where we got lyme from.
truly scary and descipable.

#27

[QUOTE=Ruth0552;5611620]
Laura- are you sure you don’t just teach high school? I think that has similar symptoms. :slight_smile:

Just wanted to add that Lyme disease is mostly carried in deer ticks- the tiny tiny ones. Larger ticks, wood ticks or dog ticks, do not carry lyme disease (recent research may have rebuked that- not sure).

In my area (NE), many horse/dog people routinely test for lyme. I won’t test unless there are symptoms, because at this point almost everything tests positive to some degree. I’m sort of wondering when testing people will become routine? Interesting thoughts.[/QUOTE]

Actually, I think middle school is worse!

You’re right about deer ticks. Odds are you’ll never know you’ve been bitten. I do believe the dog ticks carry Lone Star tick disease, not sure, I haven’t kept up with it.

However, the reliability of testing is very poor, the CDC admits that the diagnosis of Lyme is a clinical diagnosis. Where does that leave us? In the dark, I’m afraid. All I know is I was barely functioning 7 years ago, and now I’m almost back to normal.

Regrets? Yes, many. If I had been diagnosed and treated, I would have finished my master’s in computer science. As I began to get sick, it affected me subtly in my ability to comprehend higher level mathematical and computer science concepts. My department chair noticed a huge difference between one semester and the next.

Oh well, maybe it was just not meant to be. I have a horse farm instead.

#28

My doctor, who is a functional MD, is extremely literate in all things lyme. She uses a combination of herbs and antibiotics and considers the tests and the CDC’s classification of what is lyme to be worthless since the little buggers can hide.

She’s worth a trip here, plus Lexington, Va., is beautiful. Her name is Cathryn Harbor.
best
Jody Jaffe

#29

You should also look into Dr Raxlen. He has patients across the US. He treated my mom way back when typical Lyme treatment was a one week antibiotic course. She had a PICC line for several months (she probably had Lyme for 30 years), other treatments I don’t remember, and was finally able to have some relief from her symptoms thanks to Dr Raxlen.

#30

[QUOTE=starrunner;5599127]
Be aware that a lot of “Lyme Doctors” are continuing to have their licenses pulled by their governing boards.

There are good ones and then there are ones that have realizes it’s a good one for the money and are willing to say whatever to keep a patient in their office.

The idea of a relapse is hotly debated. IMO, the Borrelia never left, but can burrow into tendons, synovial fluid, etc where the access to antibiotics is limited to none. It grows very slowly, so eventually if your immune system doesn’t do its job, there is a “relapse”.

I just wish more physicians were adequate (and comfortable) in the Lymes diagnosis and willing to do a thorough treatment in the beginning so there aren’t long lasting damage/consequences.

Best of luck.[/QUOTE]

I have to disagree with this blanket statement of not going with a LYME LITERATE doctor that does not take insurance. Trust me, finding a bloody physicial to even see you with a Lyme diagnosis is like parting the red sea.Here is an example of my day today…

Contacted Duke Hospital to find out if anyone in their infectious disease of immune departments are accepting Lyme patients…response “No, we do not accept patients with Lyme”
Called UNC Hospital, Baptist, Moses Cone, and all said the same thing! No one in my state will touch a patient with Lyme.

And now you are suggesting that I only find a physician who accpets insurance to use as my doctor. To be honest, I will be dead before that ever happens.:no: The last doctor that agreed to treat me with my POSITIVE lyme test results wanted to give me shock therapy.

Lyme is an epidemic and its not just the Lyme but the co-infections. There are many great groups out there that can send you in the right direction but YOU have to be your own health advocate, not YOUR insurance company. :eek:

Find me a doctor who accepts chronic lyme patients and one that accepts health insurance, and I will send you $100 cash. Oh, and it has to be in the USA.:yes: And if you find a doctor who treats lyme and accepts insurance, you will be handed a 30 day supply of doxy and told to suck it up, you are just getting old.

To be honest, horses are diagnosed and treated more aggressively than humans when it comes to tick bourne illness’. God, if I could just check into the vet school for a month of IV antibiotics, I might have a shot at the rest of my life:cry:

#31

[QUOTE=suz;5611722]
there is a doc in east hampton new york who is supposed to be the best.
he may be able to provide refs for your area.
and fwiw, google lyme and plum island to see where we got lyme from.
truly scary and descipable.[/QUOTE]

He recently closed up his practicue due to the massive BS from the insurance companies and Medical review boards. He practice is closed and no one took it over.:cry:

#32

Well this is a very interesting thread. Mr KC has chronic pain issues some of which fit with chronic lyme with bartonella. He was on doxy for 2 months and rifampicin for 1 month for the bartonella. No effect on symptoms. I wonder if he should try different antibiotics? He never had a positive test, so it could be something totally unrelated. But it’s very sad–he hasn’t ridden his horse in almost 2 years :(.

#33

For Bartonella I was on Bactrim DS and Levaquin combo for 2 months at a time. Bactrim DS (good old SMZ’s seemed to do more for most of my symptoms than almost anything else.

My Lyme Doctor wrote a great book - The Lyme Disease Solution by Dr. Kenneth Singleton. Symptoms, treatments, diet, alternative treatments, etc.

Used to be a Lyme doctor in North Carolina, Dr. Jemsek, ID specialist, first to treat AIDS and HIV in North Carolina. Insurance company and medical board ran him out…he’s now in Washington DC, doesn’t take insurance.

My guy is going into research…probably the same reason. I’m done with treatment…hopefully for a very long time. I don’t know any good ones who take insurance. Talk to your local Lyme group, usually they can head you in the right direction. If you’re near Washington, DC, NatCapLyme (National Capital Lyme Disease Association) is wonderful.

#34

My local Lyme support group recommended a Dr. DiMarco who is part of Crozer Chester Medical Center.

I just got the test results back as positive for Lyme and negative for any of the co-infections.
He had started me on Doxy on the day of the initial visit. Less than one week in and I am already having the light sensitivity thing. He switched me last night to Ceftin.

We shall see.

#35

New article in the NY Times regarding Babesiosis. I had/have it (Maryland), it’s no picnic, let me tell you. Co-infections may very well be the reason you can’t get rid of the Lyme infection.

http://www.nytimes.com/2011/06/21/health/21ticks.html?_r=2

If you do have babesiosis, you can’t be a blood or organ donor.

#36

Proceed With Caution:

http://www.drgregorybach.com/

That’s all I am saying :wink:

#37

For those who want a recommendation

Dr. Paul Ramilo, with Infectious Disease Specialists of Virginia in Reston, is excellent, and takes insurance. I spent a year with diagnosed Lyme on oral meds, able to do very little, and after two months of IV and oral combination treatment am now getting my horse and myself fit for the fall eventing season. Good, affordable help is out there, but I tried a couple of other MDs before finding the right one.

#38

[QUOTE=SunkenMeadow;5681178]
Proceed With Caution:

http://www.drgregorybach.com/

That’s all I am saying ;)[/QUOTE]

rather ominous sounding…

#39

Curious folks here that tested via Igenex? I am so sick. Tested three times by Igenex WB; initial test and again after ABX challenges - tests once a year. I have had several bands show up but am considered neg. Combining the results I have had the following bands show up: 18,28,30,41,58 and 66. 23,34,39 IND.
Band 31 epitope neg. Anyone care to share their thoughts on why I could be reacting to all these bands if I don’t have LD? Thanks.

#40

There is a great forum called mdjunction.com which covers a multitude of illness’. They have a group for Lyme and Lyme & Fibro. I suggest that you look into this webpage and review the Lyme section. There is a specific page on understanding your Igenex test and the bands.

Unfortunately, with Lyme, the more you educate yourself and become your OWN health care advocate, the better off you will be. Understanding my Lyme has taken years and I still learn something new every time I crack open a book, join a Lyme group or find a new web site. Some of the information is great, some is very misleading.

I do know that Lyme has become more well known on the news as of late. Last week, Diane Sawyer (not sure if its ABC or NBC) nightly news did a special on a new Uber tick that when bitten, can be worse than lyme. To make matters even worse, there is not rash at the tick site, nor telltale bulls eye ring. THe NY Times also did an article within the past few weeks on Lyme.

IMO you are in better shape if you are located in the Northern states. Being in the South, many doctors will turn a deaf ear to you and just try to send you to a shrink rather than admit you could potentially have Lyme. I have been told that I have “drank the kool-aid” as well as “follow my Lyme Doctor like a cult follower”. I will follow anyone who can make me healthy again.

Some very key, and cost effective things you can do own your own are to limit all sugar intake and become gluten free. Gluten, when digested in your body, provides a food for the bactieria to live on. All processed sugars also help feed the bacteria. Green tea is amazing at helping with inflamation as well as detoxing your body. Hot baths in epsom salts work wonders, as well as lowering your stress levels and getting a good nights sleep.

I have finally accepted that these above diet changes have helped immensely. I am trying to get on the IV protical but because I live alone and have horses at home, my lyme doctor will not prescribe this type of therapy without a health advocate/caregiver. I will also have to either move my horses to a boarding barn or find someone to take care of them while in treatment due to the basic risks on my health.

So now I am trying to find a family friend to move with with me for a few months as well as try to figure out how to pay for it all…not an easy task.

The show “Monsters inside me” does have an episode on Babibiosis or bartonella(sp?) and it does explain why this co-infection is so hard to treat. Resistant bacteria develop a biofilm that protects them from the regular arsenal of antibiotics, thus the need for medications such as Flagyl and super strong anti-parasitic drugs.

The best advice I can give someone who has been exposed to lyme or its many co-infections is to download “Under My Skin” which is available on ITunes. Some PBS stations are airing it free but due to the political issues associated with Lyme, these scheduled showings are being pulled. Many free screenings of the movie are also happening throughout the country. Look for the movie on Facebook and it will update you on a free screening at a theater near you.

Education is your #1 defense against tick bourne illness’. That will usually show you what your next step should be.

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