posted
Diagnosed with Lyme late summer of 2013 but most likely had it for 10 years prior.
For the first 9 0r 10months I was treated with oral antibiotics (several different once with the staple being doxy.
Moved onto a more natural course soon after that but really wanted something a bit more so I complimented the natural course with the rife machine. I started to feel really good for about 6 months.
About 2 months ago I started getting random tingling and numbness in my hands which then turned into entire body tingling and now the last 2 weeks turned into tingling, numbness, severe fatigue, and muscles and joint tightness.
Basically very limited now on physical activity. My LLMD said I may have been reinfected or relapse. Never had these symptoms in all my years fighting Lyme. Not sure where to go with this, not really interested in antibiotics again but need to do something.
What would you do? any recommendations for a llmd in CT or surrounding states. Any help would be great!
............................................
(breaking up the post for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up post so others can read it:
Diagnosed with Lyme late summer of 2013 but most likely had it for 10 years prior.
For the first 9 0r 10months I was treated with oral antibiotics (several different once with the staple being doxy.
Moved onto a more natural course soon after that but really wanted something a bit more so I complimented the natural course with the rife machine. I started to feel really good for about 6 months.
About 2 months ago I started getting random tingling and numbness in my hands which then turned into entire body tingling and now the last 2 weeks turned into tingling, numbness, severe fatigue, and muscles and joint tightness.
Basically very limited now on physical activity. My LLMD said I may have been reinfected or relapse.
Never had these symptoms in all my years fighting Lyme. Not sure where to go with this, not really interested in antibiotics again but need to do something.
What would you do? any recommendations for a llmd in CT or surrounding states. Any help would be great!
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
"Undertreated infections will inevitably resurface" (p. 3 of Burrascano Guidelines)
So, I agree with your lyme doctor: you either did not treat your lyme and coinfections sufficiently so they continued to progress, or you may have gotten bitten again.
Either way, I strongly suggest you go to a lyme doctor who follows the Burrascano protocol.
If you have never read Burrascano's Guidelines, I strongly suggest that you read and study them. I understand not wanting to take high-dose antibiotics, and Burrascano says you must take them in combinations, but with this horrendous disease, it is often necessary.
Also, were you checked for the various coinfections and treated for all that you had? Were you tested for babesiosis, bartonella, etc. and were you questioned about the symptoms of these diseases?
Burrascano says that anyone who has lyme for at least a year also has coinfections--100% of the time.
If you don't treat and get rid of every single infection that tick gave you, then you will never get rid of the lyme. These diseases help one another remain entrenched in our bodies. Many of them compromise our immune system, so the antibiotics and special exercise program are required to get us back to normal.
I advise everyone to get to the very best lyme specialist they can afford. See Support Groups on the left side of this page. Contact the ones in Connecticut. Find out who the good doctors are. Go to the best you can and do everything they tell you to do.
Burrascano was the #1 lyme disease doctor on the planet when he was treating. They came from every country on the planet to see him. He says you must treat until symptom-free and then treat at least 2 months more in a case like yours where your lyme has gone on for years.
That is how I got rid of lyme disease.
I first wasted 2 years with a lousy lyme doctor. I made some progress with him, but then I began to get new, horrendous symptoms. According to Burrascano, because my therapy was inadequate, my disease was continuing to progress.
Then, I switched to a doc who followed Burrascano. He told me that I would never get well unless I did the Burrascano exercise program. He treated me as per Burrascano and I obeyed all the rules including the 1 continuous hour of weightlifting (a full body workout each time) every other day.
In 8 months I was symptom free. My doc kept me on antibiotics for 5 more months (until winter was over). That was over 10 years ago and I am still symptom free.
I had lyme, babesiosis, and bartonella. I was undiagnosed for at least 10 years. Still, with good treatment, I recovered and have stayed recovered.
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 at least 2 different antibiotics taken together 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 the patient has (including babesiosis, bartonella, ehrlichia, 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 babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, 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. If possible, 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. He was the most successful lyme doctor on the planet.
Welcome to Lymenet! We will help you here all we can!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Aside from possible lyme / TBD and TF's wonderful detail above,
Are you gluten-free? Gluten can be connected to all that you now describe, even if not celiac.
Even if lyme / TBD are involved, a gluten free diet could be tremendously helpful in many ways for the brain, nerve tissues, functions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for the responses. I will certainly read up on the Burrascano protocol.
I'm not currently Gluten free, was tested a while back and came back negative but that could have changed I suppose.
When I first started treatment with antibiotics I went on a strict paleo diet. lost 25lbs that I didn't need to loose, and basically did all the right things as instructed. Not much changed for me during the first year.
Once I stopped antibiotics and took a more natural approach I felt better and even better while seeing a naturopath that does the rife. Still seeing her and still getting treatment naturally but that didn't prevent whatever has jumped into my body or out of it now.
I read a lot about how antibiotics are good in the beginning but not so good at making you better long term so that is why I'm a bit hesitant to go back on them.
I've gotten a couple PM's about some LLMD's outside CT that I might try for a second opinion or approach to treating and testing what I now have for symptoms. I'm told the markers for Bartonella from my blood tests were elevated.
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(breaking up the post for easier reading for many here)
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Yes, even if someone don't test positive for celiac, they can still have an autoimmune reaction to it. If I have a slip and eat gluten, wow, can I tell.
It will take a while to tell a difference if you cut out gluten (generally). It is easier to keep weight on with a gf eating style bc you can have certain grains. There are gf pastas, chips, snacks, etc.
A lot of restaurants now have gf options.
Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up biggie's post so all can read it:
Thanks for the responses. I will certainly read up on the Burrascano protocol.
I'm not currently Gluten free, was tested a while back and came back negative but that could have changed I suppose.
When I first started treatment with antibiotics I went on a strict paleo diet. lost 25lbs that I didn't need to loose, and basically did all the right things as instructed. Not much changed for me during the first year.
Once I stopped antibiotics and took a more natural approach I felt better and even better while seeing a naturopath that does the rife. Still seeing her and still getting treatment naturally but that didn't prevent whatever has jumped into my body or out of it now.
I read a lot about how antibiotics are good in the beginning but not so good at making you better long term so that is why I'm a bit hesitant to go back on them.
I've gotten a couple PM's about some LLMD's outside CT that I might try for a second opinion or approach to treating and testing what I now have for symptoms.
I'm told the markers for Bartonella from my blood tests were elevated.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
We don't know what you mean by the "markers for Bartonella from my blood tests were elevated."
Did the doc test you for Bartonella? You really should find your blood test results and learn what tests were done and learn how to read your results.
If you WERE actually tested for Bartonella and you tested positive for it, then you must be treated for it. Were you?
Same questions regarding babesiosis.
The best lab for tickborne disease testing is Igenex in California. They specialize in tick-borne disease testing. So, look at your results and see the name of the lab that did the testing.
LabCorp and Quest are junk when it comes to testing for tick-borne diseases.
If you do NOT have your blood test results, you need to contact that doctor's office and get your results. Ask if you can come over and pick them up. You are entitled to them, but they may need a little time to get them and give them to you.
Never give up your copy of these tests. They are extremely important.
Once you locate your test results, you can post the results here and we will interpret them for you. You need to give the name of the lab, the name of the test, and the exact results.
Sorry to tell you but if you are getting new symptoms with your current treatment plan, then the treatment you are receiving is inadequate.
This is what I learned from Dr. Burrascano personally.
You may not like taking high-dose combinations of antibiotics, but if you need to take that to knock out new symptoms then I suggest you do so. You can then go back to your more natural approach and see how you do.
Please read about how the weightlifting boosts your immune system and so helps your body to fight off all of these diseases.
The weightlifting made a MAJOR difference in my health. It was practically like a miracle. So, take it seriously and do it and see if you don't also get great results.
The folks that skip the weightlifting can end up having to treat lyme endlessly.
The weightlifting actually cured my worst and most persistent lyme symptom--extreme muscle weakness. It was basically impossible for me to lift weights of any amount when I first started trying. But, I persevered and it worked out fabulously.
I wish all the best for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for the advice TF. I have already reached out to get my blood test results. I'm 90% sure he used the California lab.
Been reading a lot about B12 deficiency lately and the symptoms I have now mimic that as well.
I know Lyme and co infections have a tendency to mimic all kinds of things but I should at least check the b12 first to rule it out.
Thanks again everyone!
I'll post back once I have more results.
Posts: 4 | From ct | Registered: Jun 2016
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
How good was the LLMD who treated you?
As far as I know, the top LLMDs would have recommended a gluten free diet, whether or not you tested positive for celiac.
And with a good LLMD, you certainly would have been told which co-infections you have.
Perhaps you were not treated for long enough or with the right combos to fully address Lyme and other co-infections.
Posts: 1737 | From Virginia | Registered: Aug 2011
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