Been treated on ABX by LLMD pretty consistently since then with mild symptoms (brain fog, fatigue)
About three months ago (while still on ABX mind you) came down with some nasty symptoms. Dizziness, confusion, muscle weakness, sharp electric type pains, shortness of breath.
Feeling a little better now but...
What could be the Likely cause? Can a cyst break open after years of hiding thus causing symptoms? I have never taken a cyst buster.
Or could the ABX I've been on for a while allowed the Lyme to become resistant?
Posts: 29 | From NJ | Registered: Feb 2017
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posted
Maybe you should take a break from abx for a while and go to Herbs. I found dizziness, confusion, muscle weakness and shortness of breath on a symptom list for Lyme and stabbing
pains under Babesia. Stephen Buhner's book, Healing Lyme is a good source for herbal treatment of Lyme and Co. Maybe you could work with your LLMD on it.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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desertwind
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posted
I see you are from NJ. I have been finding more ticks then normal this winter season. Is it possible you got bitten? New infection and/ or co-infection not covered by your current abx. regime?
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Brussels
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posted
Luciano, can you speak Portuguese? Luciano is a common name in Brazil, that's why I ask.
Long term abx poses many problems.
It will certainly weaken your immune system because you destroy the good bacteria NOT ONLY in your gut, but all over the body.
You are made MOSTLY of friendly bacteria than your own body cells.
I mean, if we count all cells present in the human body, there are more cells from other beings (fungi, candida, bacteria, protozoa, worms) than your own.
Science is just now starting to investigate about the function of such huge ecosystem.
Long term abx is not the solution to keep lyme dormant, in my opinion. It may keep some of the bacteria partially dormant, but with the years, you'll get probably left with only resistant strains...
Besides, as abx contributes to the downgrading of your immune system of friendly bacteria, your immunity may get weaker with the time.
Besides, you are a perfect place for breeding candida, if you take abx long term.
Candida causes almost exactly the SAME symptoms as lyme. Plus it messes with your gut, mouth and digestive pH, affecting digestion.
It also causes horrible herxheimer reactions, and contribute to increasing allergies.
So, nope, it may be that long term abx is the CULPRIT for the disease (not that you lack abx, if you see what I mean).
Read more on your own to take conclusions before deciding what to do next.
I'm off lyme, and so is my daughter. No more abx, no more treatment, but we didn't concentrate on diminishing our immunity with drugs, but on improving it with several different approaches.
I hope you find what fits you best.
For me, drugs poison me more than help, so I had no choice than going alternative. You can also google toxins from antibiotics.
Here are some results:
A long list of toxic effects of many types of antibiotics:
Is it possible to have candida overgrowth and exhibit zero stomach issues? I've been on ABX for about 6 years but never once had bloating, diarrhea, etc. My LLMD had mentioned a couple of times that my tongue looked white but that's it. I follow a strict anti candida diet and I take my probiotics religiously.
Can candida be the issue even with no gastro problems?
Posts: 29 | From NJ | Registered: Feb 2017
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Brussels
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Have you ever taken candida killers?
Many people have zero digestive symptoms (so they think) until they take some strong candida killer.
Then they may get loose stools, and some get a strong reaction.
I think some herbal killer would do, like Cumanda, or frozen garlic pills, candida nosodes or even drugs (like Nystatin, Rifampin stuff like that).
If you do not react to a couple of candida killers, it may mean you do not have the problem.
Just a question: did you have lyme for so long without gut symptoms?
That would be great to know.
I think I never heard of anyone having chronic lyme with a perfect gut.
Specially because Bb attacks the mucosa, plus the intestinal nerves, and it messes up with the whole gut flora.
posted
I've been on ABX pretty consistently from 2012 until now. No gut issues. Never loose stools or bloating or constipation ever. I have had brain fog throughout my Lyme treatment though.
As far as candida killers, the only time I've introduced something like that to my diet was about a month ago I started with coconut oil. No herxing occurred.
Posts: 29 | From NJ | Registered: Feb 2017
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TF
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posted
When I had been on antibiotics for lyme for 2 years with some improvement, I then developed a HORRIBLE new symptom--trigeminal neuralgia. It felt like my face was being electrocuted.
At first it would happen while I was eating dinner (from all the chewing). But eventually, I could get an attack any time.
That pain is unbearable! And, it made me afraid to eat.
I went to a lyme conference and got to ask Dr. Burrascano about my case. What do you think of a patient on antibiotic therapy who develops a new symptom--trigeminal neuralgia?
His reply was, "If the therapy is inadequate, the disease will continue to progress."
I was astounded. Like you, I had never been put on a cyst buster. For 2 years I was just on high dose amoxicillin.
I changed doctors and the new doc put me on amoxi and flagyl. That took care of the trigeminal neuralgia and all of my other lyme symptoms. It was wonderful!
Then he went on to treat me for 2 coinfections that I tested positive for.
That was nearly 12 years ago now and I am still cured of lyme, babs, and bart. So, I strongly recommend that you get to a better doctor.
With lyme, you must be on a cyst buster according to Burrascano.
My new doc said to me, "Congratulations! You have succeeded in turning all of your lyme into the cyst form." Ha. Not funny.
So, your case sounds so much like my case that I had to tell you about it.
Compare your treatment to what is in the Burrascano Guidelines. Compare the dosages and be sure you are on an antibiotic combo as Burrascano says is required.
See pages 12-13 especially.
I started getting worse after 2 years of lousy lyme treatment. My disease was progressing. It sounds to me like yours is also because you are naming new lyme symptoms.
Many, many doctors give patients inadequate lyme treatment. You will treat forever if you don't take the high-dose combos (including either flagyl or tindamax for cysts) Burrascano says are required to eradicate this disease.
My treatment of all 3 diseases only took 13 months. I made so much progress in those 13 months that I now say the 2 years on just amoxi was a waste of time!
As long as you are on a lyme type antibiotic, the cysts will not break open. But, the lyme disease can continue to progress because the treatment you are on is inadequate. That's what I learned from Dr. Burrascano, and that is what I think has happened to you.
Also, if you were never treated for babesiosis, that could account for the shortness of breath.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I definitely have shortness of breath and a tippy off balance feeling. Is that most likely to be Lyme, candida or babesia?
Keep in mind I've been on ABX for about 6-7 years straight and this would be the first time I've ever hard a barrage of symptoms while on ABX
Posts: 29 | From NJ | Registered: Feb 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From Burrascano:
"Clues to the presence of Babesiosis include a more acute initial illness- patients often recall a high fever and chills at the onset of their Lyme. Over time, they can note night sweats, air hunger, an occasional cough, persistent migraine-like headache, a vague sense of imbalance without true vertigo, encephalopathy and fatigue." (p.23)
"BABESIA SPECIES-
· Air hunger, need to sigh and take a deep breath; dry cough without apparent reason.
· Dizziness- more like a tippy feeling, and not vertigo or purely orthostasis." (p.26)
posted
My LLMD had me take artmesisin years ago. That's about it. Even at that time I never had these symptoms. They all seem to be new. I don't believe this to be a new infection either which is why I'm so puzzled.
I may have the tippy feeling and shortness of breath but absolutely never had any fever or sweats.
Posts: 29 | From NJ | Registered: Feb 2017
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TF
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I had babs and I never had fever, sweats, or shortness of breath.
Once my doc started treating babs, all hell broke loose.
Taking art is NOT babesiosis treatment. So, you could have an untreated babs infection coming to the surface.
"Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme. Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection!" (p. 23)
Posts: 9931 | From Maryland | Registered: Dec 2007
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My symptoms seem to come and go. I will feel fine for a week and then some symptoms will present. They are typically not getting worse but slightly improving. Is this indicative of a herx or are these actual symptoms that should be addressed?
Can't help but think if it was babs, it would be progressing as opposed to slightly improving.
Posts: 29 | From NJ | Registered: Feb 2017
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TF
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The lyme doc that cured me told me that babs has a 1-week cycle and a 2-week cycle.
When he began treating me for babs, my symptoms flared every 7 days. Other than that, I had no symptoms.
This seems to be what you are saying. You say:
"I will feel fine for a week and then some symptoms will present."
You can always wait and see if you continue to improve without any babs treatment. Or, you can attack babs and see what happens. Do it for a month. That experiment would tell you A LOT.
Burrascano says this: "Symptoms cycle rapidly, with flares every four to six days." (p. 26)
So, I believe you are having babs flares once per week.
After treating babs for so long, my flares switched to every 2 weeks. So, I only got mild symptoms every 14 days.
This stuff is hard to believe, but that is the way this disease is. When I had the 7 day cycle, it was like clockwork. My symptoms started every Friday evening and lifted every Sunday evening.
Unbelievable!
These diseases are very unusual.
Posts: 9931 | From Maryland | Registered: Dec 2007
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What gets to me most is it seems like the symptoms for all of these conditions are the same for example in the past few months I've had
Dizziness Shortness of breath Muscle weakness Light and sound sensitivity Memory loss Brain fog Brain/neck burning
These have been described to me as definitely Lyme. Then definitely candida. Then babs. Seems impossible to figure out.
Also, most of the above symptoms have gone away without treating babs which has me a little skeptical.
Posts: 29 | From NJ | Registered: Feb 2017
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map1131
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Member # 2022
posted
These bad guys seem to take turns being in charge, or in the forefront. IMO, babesia is the boss.
Also you mentioned adding coconut oil in your diet. How much are you consuming daily? 2 tbsp. a day will really help with candida die off. Which if you are on abx, no doubt there's candida.
It wasn't until I found a recipe on the web that I could successfully get 2 tbsp. a day in me. It's 100% cocoa, coconut oil and raw honey. So yummy that I quit having sugar and junk food cravings. Big added bonus.
I had some serious die off of candida for about 2 weeks. My coconut bars have become my treat of each day.
Pam
Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Brussels
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Luciano, you forgot one important item in your list:
Toxicity!!
For me, all those symptoms you describe look like toxic symptoms to me.
My toxic symtpoms, that went away with massive doses of different binders, were exactly like that.
Have you checked your liver enzymes? Ammonia levels?
that is exactly the difficulty with lyme: so many parallel infections can cause similar symptoms.
And people simply forget that toxins ALONE (from die off or drugs) can cause the EXACT symptoms they are fighting.
The danger to ignore toxins is this: they take more killers, and the situation gets worse.
Then start allergic reactions to drugs, as the body cannot deal with toxicity any longer. It goes on red alert.
I had a total body paralysis from taking a higher dose of killers (in my case, all herbal), and feared for my life.
Since then, never ever I let binders aside.
Check your toxins, liver... In case they are high, big chances some of the symptoms come from toxins, not from infections.
Posts: 6199 | From Brussels | Registered: Oct 2007
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TF
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If you get a chance to go to a lyme conference, make every effort to go. You will learn so much. And, the important principles will become clear.
Burrascano says that if a person has been adequately treated and still is not symptom free, consider an untreated coinfection. (This is your case. Babs is untreated and you have been in treatment for a long time--6 + years.)
He also says that if a person has had lyme for at least 1 year, in EVERY case they have coinfections. (So, YOU have coinfections.)
Every lyme patient I know has both babs and bart. So, every good lyme doctor treats ALL lyme patients for ALL THREE DISEASES.
The fact that you have never been treated for babs is just ridiculous. How many years must you treat before your doctor decides to treat babs? 20?
Also, as mapp1131 says, the infections take turns coming to the foreground. So, once you get the lyme germ load down enough, then some babs symptoms can come out and give you new symptoms.
Once you treat babs, then bart will take its turn, etc.
The symptoms you listed are all lyme symptoms except shortness of breath. I had every one except shortness of breath, and good lyme treatment got rid of them.
There is substantial overlap in symptoms. But, shortness of breath is a uniquely babs symptom.
Really, you need to compare your treatment to the Burrascano Guidelines. Your treatment has been deficient as follows:
1. no treatment of the cyst form. Burrascano says that will always lead to treatment failure.
2. No treatment of babesiosis.
If you have not been treated for bart either, then your lyme doctor is really doing you a disservice.
Lyme is a collection of diseases. Nobody can get well if all they are treated for is lyme. You definitely have coinfections, per Burrascano.
How long will you stay with this doctor? Read the Burrascano Guidelines and find out what good treatment looks like. Otherwise, you could stay with the doc forever and treat forever and never get well. That happens a lot.
If you are going to a doctor in NJ, you should consider trying the doc I recommend in Maryland. I believe you would make progress.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF, you seem so knowledgeable. Thank you. I guess I've always just been grateful to have an LLMD treat me in general. His hours work for me and he is reasonably priced. He did treat me for bart 6 years ago and I've never really had any symptoms. Since I've always felt about 90% on his treatment I never really pushed it. Hearing so many horror stories, I was just glad to be feeling well enough to work, go to school, etc.
The past few months are the first time in my 6 years of treatment that I've felt like crap for an extended period. I probably seem like I'm in denial to some extent. I still kind of can't believe that I've come down with these symptoms out of now where despite being on 500mg of doxy for years.
I saw him two weeks ago and he wanted to change my meds to omnicef. Any thoughts on that? I may have to push the envelope with babs a little more.
Posts: 29 | From NJ | Registered: Feb 2017
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TF
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If you have been on JUST doxy for years, that is lousy lyme treatment. You are just in a holding pattern. All of your lyme is in the cyst form and you are not killing it.
You must educate yourself when you have this disease. Otherwise, you will treat and treat forever with a lousy doctor.
Read Burrascano page 12 and top of 13 "Combination Therapy."
That explains why any ONE antibiotic is insufficient to clear lyme disease. Taking just one antibiotic at a time is called monotherapy and everyone on LymeNet knows that that doesn't work.
So, switching to omnicef ONLY is just another monotherapy. Get with a good doctor and knock out your remaining symptoms for good and get this behind you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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