How 'do' you treat lyme? My daughter had a month oral antibiotics, then a month IV. And that was it. 3 years ago. She got 'slightly' better, but she was never really bad to begin with. Some fatigue, and leg weakness. blurry vision (she wears glasses) and occasional dizziness when she gets up too fast. She still has all those things, only not as bad.
She had blood work recently, ( I just posted this) and her IgM is high indicating a new acute infection. Really? she had no rash, no tick bite. How did she get this again? And more importantly, how do we get rid of it?
I hear long term antibiotic use can be dangerous. I hear Lyme can stay in your system for decades. I just don't know what to do. Is there a cure?
Posted by Lymetoo (Member # 743) on :
Long term treatment is FAR LESS DANGEROUS than untreated or inadequately treated Lyme disease. She also needs to be evaluated for possible coinfections.
Many of us were treated with oral antibiotics. Some do IV, followed by orals.
Cure? Depends upon what you mean by cure. You CAN get your life back. I did! But it's probably lurking in my body somewhere.
Posted by chiquita incognita (Member # 30381) on :
I would suggest reading Buhner's book Healing Lyme. This can give you some more solutions to think about, and decide which path is best for you to take. If you are concerned about antibiotic therapy and side effects after the long term, there may be other solutions.
I cannot advise anybody else, nor can I promise or ever even use that word "cure". I don't want to set someone up for disappointment.
But I do want to share my own experience. Keep in mind that (in my belief) we all respond differently to different things, and we each need to do whatever therapy we believe in and which, above all, works. For *us*.
That said, I have had a really beautiful response to the herbal Beyond Balance product, Bar 1 for bartonella. After six months, no more fingers curling up asleep into the palm of my hand, and many other neuro symptoms gone or reduced. Other things persist and I still have to fight them.But after six months, I think that's pretty encouraging.
I have not tried the company's other products, but do know that they make herbal formulas for lyme and co-infections in general.
So there are other solutions out there that you can investigate, and then decide which path is the best one, for you and your daughter.
Again I cannot advise anybody else, I am not a doctor. But to share my own plan, I am thinking I will use the herbs until they can't carry me any further, then use the antibiotics to peel the last remaining layer of the onion. It is my hope that this will not even be necessary, and that the herbs will do the whole job. But I don't know that for a fact, and only time will tell. (I privately do believe in the herbs, however, but am aware that antibiotics may be necessary at some point. The point is, this is how I plan to protect myself from the side effects that come with long-term abx use).
This is not medical advice, and you should talk to your doctor about it.
If you are interested, you can find a naturopathic doctor here: www.naturopathic.org You'd have to ask for one who is lyme literate, but I would imagine with naturopathic training, that probably most of them are. That doesn't mean that each one of them specializes in lyme per se, and I think a specialist is important. Something to ask about.
Best wishes, CI
Posted by chiquita incognita (Member # 30381) on :
PS "She had no rash, no tick bite"
I am sure that many people here will join in with me.
Not everybody ever develops the rash, in fact if I remember correctly, those who do are in the minority of people.
The ticks are so tiny that they can be the size of the head of a pin. We can't always see them.
If she is symptomatic and the test is a positive, I would tend to trust it. There can be false positive readings with lyme, just as there can be false negatives. But if she has the symptoms, and her doctor has diagnosed her, in this circumstance I personally would tend to believe the diagnosis.
But I have to qualify that I am not a doctor and can only offer this as a layperson's opinion, not as medical advice.
Her weak leg could be from neuro lyme, which must be taken care of.
Or, it could be from chiropractic maladjustment. Or from other things, which only a doctor can diagnose.
I would think if it was a chiropractic issue, she would be having lots of lower back pain along with the weak leg.
If she responds to lyme treatment, that is tell-tale right there.
Keep in mind that some people with lyme don't respond to antibiotic treatment. Buhner has some possible solutions for this in his book Healing Lyme, check it out. It's marvellous.
Best wishes, CI
Posted by TF (Member # 14183) on :
The way I and all of my friends got rid of lyme (I had it for at least 10 years undiagnosed) was to go to a doctor who followed the Burrascano Lyme Treatment Guidelines.
A Burrascano type doctor will treat her until all of her symptoms are gone. And then, he will treat her for 2 additional months.
That's how I got well.
Don't believe the scare tactics that long term antibiotics are dangerous. I took long-term antibiotics for rheumatic fever (from second grade until 9th grade as needed). This is standard treatment for that illness.
Look at how long teens are given antibiotics to treat acne--years! Treatment for TB goes on for years. So, lyme is like these diseases. You treat it until you get rid of it--like any other disease we get. No arbitrary 2 months of treatment and you are declared cured!
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Most people need only oral antibiotics. Only a few need to go on IV antibiotics.
I and my friends all got rid of lyme and company on orals only. All of us had lyme, babesiosis, and bartonella. Every person in Maryland who has lyme disease has at least these 3.
Also, a Boston TV station did a great show on lyme disease about 2 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
Once you understand the medical controversy surrounding lyme disease, then you can decide if the short lyme treatment (like what your daughter had) is the correct way, or the treat until you are well approach (like all other illnesses).
Sorry it has to be so confusing, but the medical profession is arguing about this, and we all have to do our own studying to figure out what is going on.
I had extreme muscle weakness for years and years. It was no fun. Now, I am a normal person. I completed my lyme treatment 6 years ago, and I am still symptom free, enjoying my life. That is thanks to finding a Burrascano type doctor.
Posted by 17hens (Member # 23747) on :
TF, that is about the best Newbie letter I've ever read. You get a gold star for that one! May I use it (personally, not on LN) to help newbies with LD questions?
Posted by gina_marie (Member # 31480) on :
Wow this was a lot of very helpful information! I've been reading through it and I think the first step is to get my daughter properly tested.
She had Lyme, was vigerously treated with IV's and oral. and now 3 years later still showing high levels of IgM's. However, no 'real' symptoms. I mean she's always had some vision problems, and low blood pressure and some muscle weakness. But she's high functioning and hasn't been 'ill' since her first bout of lyme. Then she had migraine, chronic fatigue. She doesn't have that anymore. But she's testing high. Basically no symptoms, but tests show acute active lyme still. They don't know what to do, and I didn't read anywhere that gives examples of people with no symptoms yet testing positive. *sigh* This disease is so frustrating! But this information helps a lot! I'm going to take her to Westchester where they have LLMD's. Thanks
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by gina_marie:
She had Lyme, was vigerously treated with IV's and oral. and now 3 years later still showing high levels of IgM's.
-
Two months of treatment is NOT vigorous!!!
-----and I doubt she has an "acute" infection---
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result."
--Dr C . from his Western Blot explanation http://tinyurl.com/ffn3x Posted by Lymetoo (Member # 743) on :
Why was she tested again if she "has no real symptoms?"
Posted by Paul Mall (Member # 27581) on :
quote: Some fatigue, and leg weakness. blurry vision (she wears glasses) and occasional dizziness when she gets up too fast. She still has all those things
just want to mention these are real symptoms consistant with lyme disease that you mentioned in your first post.
lyme does not affect every one in the same way
I was functional with lyme for 6 years and had periods of months when I felt ok and then would have times when I did not feel ok.
you need to see a Lyme literate doctor
Paul
Posted by TF (Member # 14183) on :
17hens, please feel free to use this write-up any time you think it will help people!
God bless you for helping other people with lyme disease!
---------------------------- God still talks to people today!
Posted by gina_marie (Member # 31480) on :
Lymetoo, my daughter was first treated with oral's for Lyme by her reg. doc. 1 month. A few months later she developed a severe migraine. I took her the emergency room and they gave her morphine and suggested she see a nerologist. The nero gave her a lumbar puncture, (we have MS in our family) and found 3 strands of lyme (as he put it to me) then he put her on one month iv's. he checks her ever six months and does an mri (cause the first mri showed three brain lesions which he felt was from the lyme) but he's never done another lyme test. On this last 'routine' visit, he did an MRI and blood work. MRI was fine, no change, but the blood work came back high IgM's. He called me 10 at night 'concerned'. Yeah, me too. I asked why she never had blood work done after her last treatment and his response was that conventionally it's not done...not needed after the treatment she had. Well I said, I guess we won't be following conventional thought from now on, will we? He's currently trying to find an infectious disease doc. I went to see Dr. Tact, in Kingston NY ulster county. He's totted as the BEST. He told me 3 years ago that Maria was cured! That at her age, (she was under 18 then) it was unheard of for her to get it again. Unless, of course, it was a new bite, new infection. We, he's wrong too. She has had no bite, no rash...(she did last time) and no symptoms...(under than the residual of what she's always had...leg weakness, dizziness sometimes when she stands up) but she obviously still has acute Lyme. I'm so confused.... I need a reliable LLMD
Posted by gina_marie (Member # 31480) on :
TF that video was amazing! Thanks for posting it
Posted by Hambone (Member # 29535) on :
TF, Lymetoo, and anyone else I missed who sticks around to help us.......
THANK YOU!!!!!
You could so easily just forget about this place and go live your lives, but you choose to stay and help us and walk us through this nightmare.
That you take the time to stick around and not leave us in the dark speaks volumes about your character.
I can't say thank you enough. You are all so appreciated.
Posted by 17hens (Member # 23747) on :
Here, here to every word Hambone said!
We can't thank you ladies enough for walking so many of us thru this tunnel and for sticking around to see us out the other side.
Now I'm crying. Sheesh.
Posted by gina_marie (Member # 31480) on :
Me too! I'm so grateful to all who've helped me. I feel so lost with this disease...being here helps me a lot. The information and support you've provided is beyond measure...I can't thank you all enough.
Posted by apljack (Member # 14233) on :
I listened to TF. It took a private message and some desparation on my part. I finally went to an LLMD THREE years after getting names of them. I am well on my way to smacking the crap out of this disease.
At this point, IMHO, either use an LLMD or kick around medical issues for the rest of your life.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by gina_marie: Lymetoo, my daughter was first treated with oral's for Lyme by her reg. doc. 1 month. A few months later she developed a severe migraine.
I took her the emergency room and they gave her morphine and suggested she see a nerologist. The nero gave her a lumbar puncture, (we have MS in our family) and found 3 strands of lyme (as he put it to me) then he put her on one month iv's.
he checks her ever six months and does an mri (cause the first mri showed three brain lesions which he felt was from the lyme) but he's never done another lyme test. On this last 'routine' visit, he did an MRI and blood work.
MRI was fine, no change, but the blood work came back high IgM's. He called me 10 at night 'concerned'. Yeah, me too. I asked why she never had blood work done after her last treatment and his response was that conventionally it's not done...not needed after the treatment she had.
Well I said, I guess we won't be following conventional thought from now on, will we? He's currently trying to find an infectious disease doc. I went to see Dr. Tact, in Kingston NY ulster county.
He's totted as the BEST. He told me 3 years ago that Maria was cured! That at her age, (she was under 18 then) it was unheard of for her to get it again. Unless, of course, it was a new bite, new infection.
We, he's wrong too. She has had no bite, no rash...(she did last time) and no symptoms...(under than the residual of what she's always had...leg weakness, dizziness sometimes when she stands up) but she obviously still has acute Lyme. I'm so confused.... I need a reliable LLMD
- breaking this up for easier reading ...
Thanks for the information. I still am of the opinion that this is not a case of acute Lyme. (but I'm not a dr)
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