I'm new here. My wife was recently diagnosed with Lyme based on blood tests that were actually looking for other things. We don't know how long she's had it since it's been asymptomatic thus far. Her doctor has just decided to get agressive with the bug (that sounds good), including a brain scan to see if there has been any incursion there. My wife says the diet advice is as follows:
quote:Low carbs, higher protein, veggies over fruit. That's the regimen--and lots of water to flush out the dead Lyme. The doctor says sometimes when the bug, which is now hiding out in my body, dies and begins to break down, it triggers an immune action that causes inflammation, so the quicker we can flush out stuff, the better.
How does all this sound to y'all? Immune reactions to dead Lyme? Are brain scans common for Lyme patients? I'd never heard of that before, but I guess one can't be too careful. And is a diet that prefers veggies over fruit known to help?
We're just getting started on this road, and we don't know what we're in for.
-Bill
Posts: 1 | From Silicon Valley, CA | Registered: Sep 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Sounds like you've found a great doctor to treat your wife!
Don't know about the veggies rather than fruit, but it makes sense if fruit has more sugar and carbohydrates.
Everything sounds kosher to me.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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This is one of the newby links. Since it is so extensive, might start with just a few sections like probiotics (she needs them), herxheimer reaction, diet, other supplements. Then move on to other sections as you need them.
A little puzzled at the idea that she is asymptomatic. If she was at a doctor and getting tested for other things, what was the reason for that?
Finding antibodies to lyme does not mean active disease necessarily. Can mean exposure, which immune system recognized. But these days it is very hard to get any diagnosis of lyme and get treatment, so it doesn't seem likely that the doc has got this wrong.
Another possibility to consider is that if she was tick bitten and got lyme, other germs may also have been transferred at the same time. Was there any testing for babesia, bartonella, ehrlichia?
Maybe if you told us more, we could comment more intelligently.
The diet does sound good. Low carb necessary because antibiotics knock out good bacteria and can produce diarrhea and other bad things. Since yeast infection is one of the baddies, and yeast feeds on carbohydrates, diet needs to be watched, and probiotics taken two hours after every antibiotic dose.
Posts: 8430 | From Not available | Registered: Oct 2000
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Please keep an eye out for your health too
I know I was most probably bitten by a tick several years ago. I was in an environment that had ticks everywhere - so it is no surprise for me.
Once my symptoms started, I went 2 yrs and 15 doctors before being diagnosed.
This past year my husband starting showing signs of Lyme and has since tested positive.
The probability he got Lyme from a tick is very small. We both are 99.9% sure he got it from me. Why couldn't Lyme be spead like a STD?
posted
Hey there! Welcome! Glad your wife has found a dr with a brain! That's rare these days!
Yes, follow a diet without very many carbs, no sugar, very little fruit. Granny Smith apples are OK.
As the spirochetes die, they throw off toxins. We call this reaction a "herx"...short for Jarish/Herxheimer, the drs who identified this response.
And yes, make sure your wife is tested for co-infections, such as babesiosis, bartonella, ehrlichiosis.
READ, READ, READ! Know what you're up against. Make sure your wife gets the care she needs. If you don't have a true Lyme Literate MD, then the treatment may not be given for a long enough period of time to take care of the bacteria.
here is more info.....feel free to come back and ask more questions!
posted
Hi Bill, Want to welcome you and your wife to LymeNet. Sorry she has Lyme, but you're both blessed that her lab work diagnosed it.
Do you know what test she had?
You said she was asymptomatic so far. It's possible that the symptom list you checked was the "short list". Lyme can cause problems in almost any part of the body. She could actually have an active illness with symptoms that are not typical of Lyme or symptoms that are not that obvious.
Read "When to Suspect Lyme" by the late Dr Bleiweiss at http://cassia.org/essay.htm It's easier to read & reread if printed.
Additional Info in "Symptoms Supplement" - only 8 pages. http://www.lymeinfo.net/ See: "Medical Literature Summaries" then "L.D. Files Page" then "Symptoms Supplement"
About the brain scan - I'm no authority, but I think most people with Lyme do not have brain scans unless the dr suspects a serious neurological problem like MS, Alzheimer's, etc. Not positive, but I believe Lyme can cause changes in the brain that look like other illnesses in the brain scan.
I recommend you ask her dr more about the scan, reasons for choosing it, & what he's looking for. There are a lot of advantages to knowing as much as possible about her situation & what's being done.
I've read that the Lyme bacteria can enter the central nervous system in a relatively short time. In "Everything You Need To Know About Lyme Disease", Karen Vanderhoof Forschner says "Infection of the brain can cause a wide variety of serious medical problems in both the early and late stages of disseminated disease..." (page 54)
Keep in touch & ask as many questions as you need to.
[This message has been edited by cbb (edited 02 September 2005).]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
I'm the wife of webmasterbill. I need to make a little correction on his post, sorry Bill. The Lyme was found because my doctor suspected that some symptoms I've had for a while might be Lyme. She was trying to rule it out, but my Western blot opened the door. I also have Babesiosis to deal with and possibly another parasite, although the results are inconclusive. I'm just about to start the long course of antibiotics.
I'm very lucky, my doctor is highly educated about Lyme and has a lot of patients that come to her solely for that. So I am in good hands. She is also very nutritionally oriented, so she gave me a list of foods that will help keep me deal with the whole process, including the command to hit the acidophilus heavily during antibiotic use.
At first I was very matter-of-fact about the diagnosis, but as I read more, I'm getting pretty bummed. So I have to deal with the emotional side, too.
My husband is trying to make sure we have all our bases covered, for which I am very grateful. Never having dealt with any truly significant illness, this is a huge challenge.
------------------ trying to figure it out
Posts: 16 | From San Jose, CA, USA | Registered: Sep 2005
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posted
Thanks for the clarification. Good thing you did get a diagnosis and have a doc that understands tickborne diseases.
Best of luck with your treatment. Come back anytime. Also, have you checked into support groups in your area? Might be worth looking at the list on this website. Click on support groups line in green menu box left side of this page.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Hi karieo, So glad to hear from you. Also, glad to hear you're in the hands of a LLMD.
From the initial post, couldn't tell if you were. That was my reason for some of my questions. Just wanted to be sure you'll get adequate treatment.
You have no idea how blessed you are to have a doctor suspect Lyme & check it out with the correct test. Also, to have a husband who is so caring & is interested in learning about LD. So many Lyme patients don't have that kind of support.
Count your blessings & keep a positive attitude. It goes a long way in the healing process. Even tho you don't know how long you've had Lyme, your prognosis should be good. The key is a dr who understands how complicated Tick-Borne Diseases (TBDs) are.
Keep in touch & we'll help you any way that we can.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Thanks to all of you for kind words, advice and encouragement. When I read about some of the possible symptoms (and I thought I was just menopausal!), it's pretty intimidating. I definitely want to look into local support groups. Some of those folks are probably in my doctor's fan club. She's been at it for a long time.
Posts: 16 | From San Jose, CA, USA | Registered: Sep 2005
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posted
If you have any neurological symptoms the doctor probably wants to order the MRI to decide whether to treat you with oral antibiotics or whether to use IV antibiotics -- especially since you don't know when you were bitten.
My hubby is the Lyme patient -- he has a tremor that originally looked kind of like Parkinson's, but now he has more problems with myoclonus (muscle jerks) and seizure-like episodes. He also has a droopy eyelid (called a ptosis) that made some doctor's originally suspect myastenia gravis.
In addition he has white spots or brain lesions which could be mistaken for multiple sclerosis. Most recently he has developed a transient Bells Palsy (the left side of his face droops). Lyme can exhibit many different neurological symptoms and can affect any of the cranial nerves. Both the central and the peripheral nervous system can be affected.
The thing to remember about Lyme and Babesia and the other possible tick-borne infections is that each different bug basically requires a different group of antibiotics to treat it. There is some overlap, but for the most part what works on Lyme has no effect on Babesia etc. That's one of the reasons that it is so difficult to treat these illnesses.
Some doctors treat one infection at a time and others try to treat them all at the same time. I don't think there really is any hard and fast evidence to say which works better or which method will get you well quicker. Every person is so unique and has their own set of bugs. Many also have viruses and other health issues which may be completely Lyme unrelated.
Since you are new to this, I would suggest that you start a notebook. One page per day is good -- list meds for the day with doses and general notes on symptoms. Also if you add or change any supplements. Be sure and note any tests or other treatments such as massage or sauna etc.
There will be times during your treatment when you might say I feel great or I feel rotten. You are going to be scratching your head trying to figure out what you are doing that made you feel different.
Sometimes it will be something obvious like I added a new antibiotic and other times it could be something more subtle like I got a good night's sleep 5 nights in a row. And then you will be asking what did I do different that improved my sleep.
Good luck and welcome to LymeNet.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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