Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
On March 13, I was diagnosed with Lyme Disease...for the 3rd time. The last time I was diagnosed was in Summer of 2011. The time before that was in 1987. After my doctor (well Nurse Practitioner) informed me that I was infected, once again, I said, "well this is the 3rd time I have been diagnosed, should we be concerned that this is Chronic or something?" She said she'd call me back because she was unsure. When she called me back she said that this is a new infection and that there's no need to worry about the infection coming back. After this bout of antibiotics (which make me sick to my stomach) I will be cured.
So I had physical therapy today because I have been having trouble with my right leg for years and now it's gone down to my knee (which is why I made them check for lyme.) The physical therapist made me feel like a dumb ass because I really don't know anything about lyme and have never really read up on it. I know a little about it, but I need to know more.
Can anyone please tell me a good site that can explain it really well and is not above thinking there is such a thing as Chronic lyme disease?? I was just reading up on how lyme can cause hormonal issues and those issues can effect the healing process and I have hypothyroidism and was just recently diagnosed with Polycystic Ovarian syndrome.
Should I seek a specialist??
So I had physical therapy today because I have been having trouble with my right leg for years and now it's gone down to my knee (which is why I made them check for lyme.) The physical therapist made me feel like a dumb ass because I really don't know anything about lyme and have never really read up on it. I know a little about it, but I need to know more.
Can anyone please tell me a good site that can explain it really well and is not above thinking there is such a thing as Chronic lyme disease?? I was just reading up on how lyme can cause hormonal issues and those issues can effect the healing process and I have hypothyroidism and was just recently diagnosed with Polycystic Ovarian syndrome.
Should I seek a specialist??
Fire him/her!
You're entering a world filled with 'cans of worms' and are asking for some simple answers to one of the most confounding, mis-understood, mis-treated, under-treated diseases in the world! AND one where the politics of it have skewed all rational thinking.
For instance----- the nurse that told you that it was a 'new infection' was reading straight from the 'playbook' of the IDSA, NIH, CDC etc. But it also COULD be a new infection. :(
I'm at a loss as to where to begin so if you're ready for some reading (for the layman) I would start at
http://www.lymeneteurope.org/info/
Tom Grier's articles may be a little outdated in some technical respects but for the layman---- can't be beat.
Lyme disease is known as the Second Great Imitator (syphilis, a similar bacteria, was the First). So it's not uncommon for us to have symptoms that imitate other conditions, that wax and wane, that not only imitate but DO affect other organs, systems.
And yes you should consult a specialist. They're known as LLMDs (just a nickname really). That stands for Lyme Literate Medical Doctors and usually they're members of ILADS.
The problem is----- and it's a big problem, almost any type of doctor can join ILADS and call themselves an LLMD. Even snake oil types. (It didn't use to be that way.)
You live in ME? That area may have some support groups you can ask for suggestions. There is one in NH Dr. Rex Carr that 'seems' to treat aggressively enough to possibly help with Lyme disease.
A local newspaper said this:
http://www.ourherald.com/news/2007-07-05/Front_page/f03.html
If I lived in NH I would certainly be open to trying him. (All doctors that treat Lyme aggressively now have to be very careful due to the witch-hunts that are going on.)
Start with Tom Grier. I'm giving the following links for if and when you're ready ONLY. (see below).
***********************
Another site to read:
http://www.ilads.org/
At ILADS you can download their treatment guidelines (very large file)
http://www.ilads.org/files/ILADS_Guidelines.pdf
What used to be considered the 'bible' for treatment is:
http://www.lymenet.org/BurrGuide200810.pdf
It's still good but Dr. Burrascano has descended into the promotion of certain supplements. But his medical advice is still good.
I look forward to reading up!
Just to clarify---- (my disclaimer) ----I can't say if Dr. Carr is a 'good' llmd or not. That one newspaper article at least suggested that he acknowledges Lyme and the need for antibiotics and that some people liked him which is at least a 'starting point'. I'm sure you can understand the distinction. :)
I don't know many people in NE but I do know that some of them have to travel to CT or NY to get treated. There are many good llmds in those states and there are also many 'not so great' ones. Again, we're back to the crap shoot.
The Great Kate,
Dr. Carr's office is in Hanover, NH which is on the NH/VT border (just up the street from Dartmouth College). If you live in the Portland, ME area, it would take you about 2 1/2 hours drive.
Just had my MD apt at wellness ctr (left my apt at 12:30 pm and got back at 7:30 pm. That is too much!). My visit was so fast made my head spin again. The guy asks so many questions and keep typing. Could not ask all my questions and he had a PA sitting in for learning purposes. It just hit me a few minutes ago, that he might have changed my ABx from Doxy to Ceftlin because I take clonazepam. If I had picked up on that could have told him have taken doxy many times in the almost 16 years I have been on clonazepam with zero interaction..
Bought almost $100 of vitamins, supplements, upper respiratory supplement, something called "licorice root", something with salt in it (all of a sudden I have low blood pressure) and a probitotic. Not mind the vit D (100 pills at 5000 IU's for under $10) and probiotic as I am about to start a long trip on anti-biotics but the other stuff seems like crap. I have spent about $300 on "stuff" at this wellness ctr and I can NOT say any of it has helped.
I want REAL PRESCRIPTION MEDS!!!!! So, I have ONE anti-biotic, ONE anti-viral and another anti-biotic that I will supposedly take if this zithro/amantadine combo does not work (it isn't).
Might be saying "bye, bye" to the Northampton wellness ctr. Too bad that Dr Elson is a nice guy but is in such demand that my supposed 45 minute visit turned into a head spinning 30 minutes with many unanswered questions.
Oh and another blood test to check my liver. Cannot wait for these deductible bills to come in.
This question is a clich on this group and the CFS group but "why can't I find a good MD who will be calm, competent and spend some time with me (not rush me out)?".
Hahaha......just wait for those suckers who will be on Obamacare next Jan and will find out what many of us already know; you will get 5-10 minutes with an MD and most will be a$$holes! 30 miIlion more patients and the same or less amount of MDs!
Did you have to buy those supps from him or did he offer other places you might buy them?
A bit of caution about the licorice root----- make sure it's deglycyrrhizinated licorice. (I can't imagine it not being) but just double check. Licorice root (while the science doesn't give any promise of it's efficacy---- some people swear by it) if it isn't deglycyrrhizinated it can be dangerous. I have a friend that wound up in the hospital because of drinking licorice herbal tea. It reduced her potassium levels to a dangerous point.
I treat all supplements and herbs with as much suspicion and caution as I do drugs.
I think that would be a good idea---- but that's just my opinion and not meant to try and influence you.
Focus on a doctor that may be able to treat you with antibiotics. (I hope Dr. Carr can be that one, since he's at least in your state.)
Thanks for your reply.
I just felt so upset and anxious after that visit. Still feel that way today and I just ripped a poster over on CFS because I did not care for her reply when I asked "what is the dept of DSHS'? And she answers back with the answer but asks me if I am American (already did not like that poster, she is a moron). I know I will get flamed by many posters for my overreaction back to her.
The MD at the wellness ctr just sits at his desk and types away and does not cover everything and throws supplements and script meds at me which I have never heard of before. It really makes your mind spin because it happens so fast and next thing you know he is ushering you out the door! I had many more questions. But he is nice. :) Sheesh!
They sell all that crap there which bothered me a little when I was first there last Dec but it also helps a person like me that would have to drive 40-50 mins to find a health food store that carries many of the things they have. Not big on buying suppplemnst online not knowing where they come from. So, no, I did not have to buy them there but did. Luckily, because of me, I let them know that one of their products was past expiration date (saved some $$$).
The licorice root is NOT the "DE....." type and I read about it last night and it does say can lower potassium levels and for short term use only. But am only supposed to take it for 25-30 days at most. Does concern me.
I paid them $36 for a probiotic which seems very expensive but only $8 for 100 pills of 5000 IU of Vit D.I also see all those people sitting in that room with IVs in their arms getting those IV cocktails full of vitamins and nutrients. That place is a cash cow.
Plus, not only was that a long day because of the drive but this MD (the founder and owner) is only available every 3 months. Not good enough. The place is very popular so have to see a PA or NP instead in between MD appts and I know they are not as knowledgeable as an MD.
This guy threw so much at me, made me nervous with all these supplements and even told me to buy a blood pressure machine at radio shack. WTF? I will not.
The anti-fungal he is putting me on is Nystatin. With all the vitamins and supplements I am already on and all these he added (licorice root, mild thistle, probiotics and others) can be overwhelming. Plus, not supposed to eat salt an hour before or after staking Nystatin. They is salt in many foods and must take Nystatin with food.
Not a great day. At least I told him nothing he has done has helped me so far.
@cave--thank you again for the info and I understand what you mean about Dr. Carr. I have to formulate my own opinion, but I do appreciate the recommendation! I have been so exhausted. All I want to do is sleep so I have not been able to read much of what you sent, but I have them bookmarked and will keep at them! :)
Oh...I just recently realized that a bunch of times I have taken my doxycycline with dairy products...which supposedly makes the anti-biotic less effective. I have had a 21 day course and I only have about 4-5 days left...should I call my doctor about that??
HOWEVER---(evil grin) if you can convince your doctor to give you more days of doxy because of lessened efficacy then........... snerk.
Sorry to say this---- but it has to be said: a 21 day course of doxy is almost useless for Lyme. But it's what the IDSA says will 'cure Lyme' and that's what most docs believe. Many Lyme specialists will say that a short course will just drive the bacteria into hiding or a cyst form only to come out to play later on---- with some of their friends. :(
This is because of the replication time of Borellia burgdorferi (Bb) which is MUCH longer than most bacteria.
Here is what Tom Grier has to say about that:
snip
The division time of Borrelia burgdorferi is very long. Most other pathogens such as Streptococcus, or Staphylococcus, only take 20 minutes to double, the doubling time of Borrelia burgdorferi is usually estimated to be 12-24 hours.
Since most antibiotics are cell wall agent inhibitors, they can only kill bacteria when the bacteria begins to divide and form new cell wall.(35,59-62)
This means: Since most antibiotics can only kill bacteria when they are dividing, a slow doubling time means less lethal exposure to antibiotics.
Most bacteria are killed in 10-14 days of antibiotic. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months!
Note: Antibiotics kill bacteria by binding to the bacteria's ribosomes, and interrupting the formation of cell wall proteins.
Like other spirochetes, such as those that cause Syphilis, the Lyme spirochete can remain in the human body for years in a non-metabolic state.
It is essentially in suspended animation, and since it does not metabolize in this state, antibiotics are not absorbed or effective.
When the conditions are right, those bacteria that survive, can seed back into the blood stream and initiate a relapse. (59-62,70)
This means: Just because a person is symptom free for long lengths of time doesn't mean they aren't infected. It may be a matter of time. Whereas viral infections often impart a lifelong immunity, Lyme, like other bacterial infections, does not retain active immunity for long periods of time. People are often reinfected with Lyme. (96)
end snip
Sorry for the rant. Well, no I'm not!
I will have to assume that the non-deglycyrrhizinated licorice will be o.k. for a short period. I would be concerned myself, though.
snip
"The European Commission 2008 report suggested that "people should not consume any more than 100mg of glycyrrhizic acid a day, for it can raise blood pressure or cause muscle weakness, chronic fatigue, headaches or swelling, and lower testosterone levels in men."
snip,
Since that excerpt doesn't give a time limit I would assume that they mean forever. But I certainly wouldn't. Do your pills have the mg. listed?
I couldn't access the German Commission E Monographs to find out what it had to say about licorice---- just the fact that it's 'approved' but I would have to pay to get the monograph and see what was actually said.
At some time in the past I was able to access the entire German Commission E Monographs (through a back door). Why I like them ---- they used to be the creme de la creme of herbal knowledge. If they still are, I don't know.
Of course, like so many things, I googled "licorice root" on Weds night and read over a few links including the one you just excerpted from. I saw that warning about no more than 100mg/day. My bottle is full of 450 mg pills and am supposed to take up to 6 pills/day which would be 2700 mg/day! I have only taken 4/day so far.
The weird thing is I read on another website that someone got volunteers to test Licorice root for something and they were taking 3.5 grams/day for 2-3 months! Wouldn't 3.5 grams be equal to 3500 mgs/day (I think 1000 mg = 1gram)? They did not report any side effects. Who knows?
But I think I agree with you that this MD and his associates are too into unproven alternative medicine. I just hope the new prescriptions (anti-fungal, anti-biotic) get to my pharmacy. Their belief in alternative med, quick visits and the long 2 1/4 hour drive are the reason I hope the Dr. Carr visit goes well.
Eventho I am not supposed to eat them, I bought Bananas yesterday just for their potassium. Not sure how long I will take this "L root", the Milk Thistle or the salt pills. Not sure any of them will help and not sure really what my MD thinks they are for (salt pills for low blood pressure?)? One site claims licorice root cures or treats almost anything. Sheesh!
Until then it's a crap shoot. Good luck. LOL
Ahh I guess I really need to read up and become an expert. Thank you again for all the information. I have a lot to look at/think about.
I would bet that the 'disease specialist' you saw was a member of the Infectious Disease Society. That group has been responsible for one of the most damaging 'non-treatment' methods outside of the doctors who don't know crap about Lyme. Those two groups account for the reason there are so many of us that remain sick for so long.
That 'paper with all sorts of letters and numbers' on it was probably a Western Blot. That will also have the acronyms IgM and IgG on it. The IgM is 'supposed' to mean recent infection. The IgG is 'supposed' to mean old or ongoing infection.
I've learned, and so have many of us, that those mean almost nothing when it comes to Lyme. I've seen people's levels jump back and forth within a few months.
I know that, since you're new to all this, that explanation will mean nothing to you----- but it will some day.
May I strongly suggest that you start keeping copies of ALL your test results? A new doctor can request those from a previous doctor---- but it's easiest if you can just hand them to him/her. (You're allowed by law to have a copy. The lab can't send them to you but the doctor HAS to give you a copy.)
You said: "Ahh I guess I really need to read up and become an expert. "
Yeppers. And the sooner the better. (grin)