Co-infection babesia IGG High States its past infections
Please tell me what your thoughts are on this recent lyme result????? tests state negative not enough bands. Stil have leg issues twitching vibrating left foot. muscle cramps in calves, Ringing ear, muscle pains changes and can affect arms as well as vibration feeling in fingers. Left sided neuropathy. I am taking Teasel, Samento, LDN and waiting till I get back from vacation to start minocyclyne. Totally worried about vacation in hot Florida and how I will feel with Lyme issues??? What are your thoughts.. Thank you in advance for yout time...
I do have an LLMD however I don't feel like the doxy made anything better maybe worse, now have minocycline scared to start before I go in fear of herx. Now I also have a dry cough lungs hurt. I'm so tired of all of this. I get so frustrated. Wish there was a single cure , wish this bacteria wasn't so violent!!!
I just left a comment on an earlier post about testing for Babesia. Looks like you already did it!
You have tested positive for Lyme and Babesia. Lyme is famous for producing varying antibodies over time. You could test different every time.
If your LLMD only treated you with Doxy in the past, then that's not a very well informed LLMD. Doxy does not cure Lyme once it's past the early stages. Dr. Eva Sapi has shown in lab tests that Doxy triggers many of the spirochetes to curl up into ring forms and to form cysts to hide from the immune system. That's why even long term Doxy is insufficient.
A good LLMD will generally treat with two antibiotics at a time, which is far more effective than just one. If you've had it for more than 2 years, Minocycline by itself likely won't finish it off either. (Watch out for dizziness, which is almost universal in women who take Minocycline.)
What did your doc say about the Babesia positive test? I don't put much stock into conclusions about "old", "new", or "past infectious" based on the type or number of antibodies for tick borne diseases. These assumptions come from experience with other infectious diseases. But Lyme is really different from anything else we know. I had had Lyme for 6 years when I finally had a Western Blot. I was severely ill, going into the hospital a couple hours after my blood draw for the test. And yet I only showed very low antibodies on my IgM, with only a band 41 on the IgG. According to conventional wisdom, I had a mild, early infection. Hah. In reality, I had a severe late stage infection.
And mainstream medicine knows little about Babesia. There has been little research done, so must real knowledge comes from LLMDs who have been treating it for years. The IDSA guidelines are awful in that they say not to treat it without laboratory confirmation. But even the CDC admits that current testing is poor, missing many cases. I read about one study where labs only found 1 in 4 actual cases. The Red Cross is worried about it in the blood supply because they don't have a reliable test. And yet the IDSA says don't treat it without a postive?? Obviously the authors of that policy never had it themselves.
Some cases are easy to treat. Others are tough. Mine is a stubborn case. I still feel really crummy almost 6 months into treatment. I am making progress, but it's slow, and limited by my body's ability to keep up with the treatment.
If you have Babesia antibodies and shortness of breath, then you are sick with Babesia. You need to be treated for it. If your "LLMD" isn't going to treat it, you MUST find another one. Lyme treatment usually fails to eradicate the disease when Babesia is present. This could be a part of your previous treatment failure. There is some kind of synergy between the two diseases that we don't really understand and I can attest to that!
I had heat intolerance with my Lyme, so that is a risk for you heading into a hot climate. I have heard that others were cold intolerant and loved summer as a result, so heat intolerance isn't universal. My breathing, brain fog, and fatigue got worse almost immediately in hot air. I also developed temperature regulation problems along with strange, random sweating (which was from the Babesia), regardless of whether I felt hot or not. Getting into an air conditioned room helped almost immediately.
Since your lungs hurt (as mine have, too), be sure to stay very well hydrated. Drink water frequently. I have it with me at all times, and always sip it in the car with the a/c running. While cool a/c rooms help, the dry air of a/c doesn't. I have a dry mouth spray that I carry in my purse so it's always accessible. A dry mouth means your lungs will get dry, too.
Do you take magnesium supplements? It has eased my air hunger for over a year, and when I asked my LLMD why, he said that it relaxes muscles. He said tense breathing muscles can add to air hunger, and relaxing them helps.
I take calm. It does help. My neuropathy which is primarliy left sided has been a real pain. I also have a lot of muscle pain in legs and arms. I twitch as well in leg and body muscles. I bought the A bab and starting tomorrow. Ill let u know. Thanks so much for ur responses. I feel very alone at times. People look at me and say I look great but don't know the pain I'm in. And ask when I will be better. I have no answers only want to survive to take care of my daughter and hope one day to have a somewhat normal life. So any and all of your help os greatly appreciated.
I agree that a new doc may be in order, tho I know that is the last thing you have time or energy for. Doxy is the old standard treatment for Lyme, but it works only in very very recent infections. And if you have co-infections (other diseases brought by the Lyme ticks), they likely need entirely different meds from Lyme and may not respond to doxy.
Everyone is affected differently, and as Rico notes, it takes time for even the best tuned-in doc to figure out what's going on. A doc who is both patient and knowledgeable is the key.
I was helped a great deal by magnesium (Mg) supplements, and I still take them today, after being well for quite some time ... it seems that magnesium is already low in the American diet, and Lyme bacteria use it up on top of that. Any variety ending in "-ate", like magnesium malate, orotate, citrate, etc., is said to be the most absorbable. My favorite kind is a blend of Mg has citrate, aspartate, and orotate in it. I've read that the kind combined with calcium (like 'CalMag') is hard to absorb. Mg will likely help with the muscle twitches and cramps. It did for me; I stopped hurting all over.
Minocycline makes your skin sunburn very easily, so you need to stay in the shade and not near the reflection from the water. Long sleeves, a sun umbrella ... OUT of the sun. It stresses you immune system to be burned, so even tho you'd rather be outside, you need to be where you can protect yourself from the rays. If you can find a shady place with no reflections off water etc., you should be okay. I don't know about whether Lyme tends to heat intolerance as well ... but I'd stay hydrated and get lots of rest.
Part of the reason you may be feeling worse are the herbs you are taking. When the bacteria die off, you can easily get what is called a Herxheimer (or 'Herx') reaction, which is feeling worse as the bacteria die off and release toxins into you body. If you are taking these of your own accord and not because of a doctor recommendation, you might want to ease off and see if it's less intense. At least while you're on vacation.
It looks like you are an hour or two north of NYC ... the good news is that there are good Lyme docs not terribly far away. If you email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel, they can send you the names of LLMDs. As you have already found, a doc who says he/she is an LLMD could be Donald Duck and totally clueless. There is no test or credential that makes one an LLMD: any MD can call him/herself that. It's more of an attitude that makes an LLMD, and an understanding of Lyme and what is going on in that branch of medicine. ILADS is the main voluntary group for docs who take a broadminded approach to Lyme ... more broadminded than mainstream medicine, that is. It is not uncommon to switch docs during treatment, because Lyme is a tricky area, and not all docs are equally tuned and, and may just miss something like a hidden co-infection. Doesn't mean they are bad docs (tho it could) ... instead it could be that they just have a blind spot.
I am with Rico in saying that if your current doc isn't cutting it, you have to find a new doc with a new view. I know it's the last thing on your list (after surviving Florida), but it's what I would do. I went through TWENTY docs before one of them, in desperation, tested me for Lyme, and it came back positive. The doc blew off the positive test result, tho, and said I couldn't possibly have Lyme .... so I took the test results, found an LLMD and kicked Lyme and babesia a few years ago. Definitely worth doing.
Let us know how we can help -- best wishes to you --
and PS, you could also try Epsom salt baths. Epsom salts ARE ground up magnesium, and sometimes it's very soothing to lie in a warm bath and let the Mg absorb through your skin. You wouldn't need both baths and pills at a certain level, but I don't know how to measure that. I took the supplements. It was easier than trying to remember where the bath tub was and how to get in and out of it .......
Just a warning from personal experience, I have had terrible herxing with Babesia treatments. I just learned in some of my reading that Clindamycin also acts against Babesia and can cause a herx of fatigue and headaches. That was an Ah, Ha! moment for me, as I was prescribed Clindamycin as an intracellular abx about 9 months into Lyme treatment. I felt terrible when I took it. I had a narcolepsy-like need to sleep and really wasn't functional for about 1/2 a day. My husband was out of town and I had to call friends to come get our young daughter for a few hours. I literally couldn't take care of her.
Now I realize that was most likely a Babesia herx, not a Lyme herx. I am still having nasty Babesia herxes with each new herbal or prescription. I recommend you start something new at night (such as A-Bab), and start low and slow, working your way up as you stabilize. It took me a month to work up to 3 pills of Malarone a night, and I just had a massive and miserable herx a few days ago on a SINGLE drop of Bab-3, my new herbal for Babesia. I goofed and took it in the morning. I also realized after the fact that the naturopath had told me to start with 1/2 drop. Oops.
Taking too much of an anti-Babesia herbal or Rx can trigger respiratory distress, so you don't want to risk that. The key is to go only as fast as your body can handle.
I am starting a herbal tincture for babesia wish me luck. The neuropathy is awful right now. I am also still taking teasel and samento and ploaning to start minocyline in a few weeks after doing a full babeisa treament. I dotn want to overload my body. I do detoxing such as epsom salt baths extra water. I was thinking of doing coffee enema. Have anyof you done this and what has worked for you?? Thanks for all your support today is my 35th birthday but I dont feel a day over 70:-(
Coffee enemas can cause numerous side effects, including infections, sepsis (including campylobacter sepsis), severe electrolyte imbalance, colitis, polymicrobial enteric septicemia, proctocolitis, salmonella, brain abscess, and heart failure. If the coffee is inserted too quickly or is too hot, it could cause internal burning or rectal perforation. Long term use of coffee enemas can lead to malabsorption of fat, fat-soluble vitamins, and calcium.
The use of coffee enemas has led to several deaths as a result of severe electrolyte imbalance, hyponatremia, dehydration, pleural and pericardial effusions. The U.S. Food and Drug Administration (FDA) has ruled that study participants must be warned of the risk of death from coffee enemas in studies that use them."
As you can see, I'm not a proponent of Reverse Lattes. (grin) But many people just love them!
Let's see, if are 35 but feel like you are 70, then that means you've packed in twice as much of life's experiences than the average person!
Okay, so that's looking on the excessively bright side given what you're going through, but it means you're tough, and you'll make it through. You found us, after all!
If not said already, I would NOT freelance with meds, vitamins, treatments, whatever on top of what the doc prescribes without the doc's knowledge and approval. If it's vitamins and supplements, doc may not care, but then again there are things that might conflict with the prescription meds and the doc should advise you on that.
I always took a list with me to the doc's of everything I was taking and handed it to him so we were on the same page. Chemicals are chemicals, whether they come from the pharmacy or the grocery store vitamin aisle.
That goes also for tinctures and herbs and vitamins. They all look like chemicals to your body.
btw, Epsom salts baths are not for detoxing ... they are a way to absorb and supplement magnesium levels. There are other things for detoxing, but I didn't use them and haven't looked into them.
Take a list of everything you are taking and doing to your next appointment and get the doc's okay, and a list of what you would like to try. Better safe than sorry.
Happy Birthday! Well, maybe you don't feel happy right now, but it's still good to celebrate life! My first birthday during Lyme treatment was just a blur. No birthday cake for me as I couldn't eat the gluten or sugar. My second birthday during treatment I had a horrible day with Babesia. The Boluoke I was taking triggered a symptom flare very similar to descriptions of an acute infection. It was awful. I am confident the next one will be great!
Re: coffee enemas, I read up on them and even bought the organic coffee and enema kit. Then, my husband and mother talked me out of it. They're both quite conservative when it comes to any kind of treatment, and it was just too "out there" for their comfort. So, I didn't do it. I did wonder how it would affect my liver, though, as my liver has suffered during my illness, probably from Babesia.
Sometimes I wish I had at least tried it. Even people who aren't sick say it makes them feel better. I don't think that doing them occasionally (every few days at most) can't hurt. I did read about a woman who became seriously addicted to them and died after doing about a dozen of them in one day. So don't go overboard.
Jackie - I had the exact same question when I read a blog by a woman with really bad Babesia who had a strong reaction to only 1/3 of a drop of A-Bab. How in the world do you measure out a third of a drop??
Well, my doc's new ND explained it to me. She said you measure out a small amount of water (I use 2 Tblspoons) in a glass, put in one drop, and swish it around to blend it thoroughly. Then measure out half and drink it. Voila! Half a drop. I save the other half for the next day.
On epsom salt baths... they're soothing and can help you feel better. They help nerve and muscle function, which must surely include the process of eliminating toxins.
I was told by my 98 year old grandmother that her mother was incredibly knowledgeable about natural treatments and remedies, and she used Epsom salts often to draw out something from under the skin. She said her mother told her to soak her hand and lower arm in Epsom salts when she got phlebitis and a red line was travelling up her arm. Cleared it right up.
Once I got the tip of a rose thorn buried so deep in my cuticle I couldn't see it to get it out. I knew it was moving deeper into my thumb and was worried I'd need to see a doctor when Grandma recommended Epsom salts. Over a couple days of a couple 1/2 hour soaks a day, the Epsom salts drew it out closer to the tip of my finger, 1/2 inch from where it went in. I could tell it moved a whole lot faster after I started the soaks.
So while Grandma isn't a scientfic answer, her lifelong experience is that Epsom salts can draw some toxins out through the skin. I don't know if that's what happened for me during Lyme treatment, but my doc does recommend them while herxing, and they did make me feel a little better for a while.
Some people feel especially sleepy after an epsom salt bath. Nothing wrong with this. Just drink plenty of water and go lie down.
I started babesia treatment and its tough. I swear I need to be more grateful. It's just hard when I haven't had a day w/o some weird pain or symptom. My skins on fire right now, my nerves don't like me right this moment. Thank you for your kindness and info. I'm hoping to be more optimistic as I go. I need to make an appt with my LLmd soon. I am just dr'ed out right now..... I'll keep you guys posted.
Don't be a hero if the side effects are more than seem reasonable. I'd call the doc's office and report the severity of the side effects from the meds, so they can make the call on whether to switch or reduce dose or whatever. That's not a change I would make without doc's okay, but just a quick check in call to the doc's office might be worthwhile. Because it's hard for them to know how bad you feel, you could tell them it's a  on a scale of 1-10 if that is helpful. Docs deal with people who thing a hangnail is a national disaster, and others who just soldier along regardless of how awful it is.
Don't be a hero. If it's more than seems a reasonable level of misery, call the doc's office or if it's after hours, leave a message at the service who pick up calls after hours.
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