I have been treating for almost two years now with very little improvement. I have treated for lyme, bartonella, parasites, leaky gut and more.
My main symptoms are extreme dizziness, headaches, crying a ton, feelings of hopelessness,brain fog and stomach problems...lack of appetite and some air hunger. I literally can sleep all day and night too. Hand tremors.
I do know for sure that I have parasites but also think I have a co-infection too.
Does anyone have any suggestions, ideas? I have 2 kids still at home and 1 in collage. I feel SO hopeless and scared!!
Thank you!
Posts: 486 | From USA | Registered: Jan 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
These are all Babesia symptoms. You could be the textbook case.
Why haven't you been treated for Babs? Testing negative is meaningless.
posted
Thank you boxermom for getting back to me! I am having such a hard time lately!
My LLND just mentioned that it may be babesia after all but we haven't started treatment yet. He has been focusing more on parasites and methylation. I also just did 2 months of IV rocephin and azith with no improvement so he stopped that.
I talked to him today and he prescribed mepron and zith. I will start those tomorrow but my insuaance is haggling over the zith. but covered the Mepron. Weird!
I've also had extreme mold exposure, but I don't have the HLA gene that can't detox mold. According to that test I can detox lyme and mold but not chemicals. We just got through with a HUGE and costly house remodel to get the mold out.
My cd-57 went from 31 to 120 in the last year but I feel no better. I know that test is not 100% accurate as to where a person is at.
Thanks again for getting back to me! I'm so confused on what to treat...lyme, babs, bart, parasites, methylation, proto...ugh!!
Also, my LLND doesn't want to add art or anything else to the mepron and zith. That worries me as I have read that most add in art or other things.
Sorry so long!
Posts: 486 | From USA | Registered: Jan 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
While it sounds like babesia is an issue, this sentence stood out to me:
"We just got through with a HUGE and costly house remodel to get the mold out."
Having been poisoned by the products used in a remodel, I had most of the symptoms you described above along with more. It left me permanently disabled even before the Lyme.
This doesn't mean babesia isn't an issue (the air hunger is suppose to be a main symptom).
You might need to use some clear coat to create a barrier in offgassing walls or hard floors. AFM makes this product.
You might want to check out the book "Prescriptions for a Healthy House" by Baker-Laporte. Other products are suggested in it and the authors do consults.
We don't do any house renovations without it.
Sorry you're going through this.
Posts: 2839 | From California | Registered: Jul 2012
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Yes, the house has been a major issue but I did have the Real Time urine test to check for mold in my body and it came back with zero mold. It's supposed to be the best test out there for mold detection in the body. But... who knows. I do know the mold played a major role in lowering my immune system and letting the lyme and co's take hold.
We put in a eco friendly pre finished hardwood throughout our entire house except for bathrooms and laundry room. I have also been running my hepa air filters non stop.
I just can't stop crying. I tell my family I'm going to the bathroom and I just sit in there and cry. I'm so sad to miss out on these precious years with my kids, it's the most important thing I've ever done....be a mom. I just feel like giving up sometimes but would never do that to my children.
Thanks for your reply, I appreciate it.
Posts: 486 | From USA | Registered: Jan 2012
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posted
Sorry Judie, just re-read your post and see that you are talking about the VOC's from the materials, not so much the mold.
I will look into the clear coat. Is there a way to test for the VOC's?
We also got some new furniture too, which I'm sure is off-gassing.
Posts: 486 | From USA | Registered: Jan 2012
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gmb
Unregistered
posted
Birdie,
If insurance will not cover Zith, will they cover biaxin or another macrolide? Worth checking into. Zith is added to help the bugs from developing a resistance to the mepron.
Biaxin is a bit tougher on the system than zith but some don't have any issues. I'm not sure if eurithromycin (sp?)is as effective with mepron. check with your Dr and see which of these insurance will cover.
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
birdie, hang in there! I am by no means a babesia expert, but it sounds like this may be your last piece here. From everything I read, you are checking babs boxes pretty clear.
Keep your chin up: look at all the work you have done already! I'd leave your clean and fixed up house alone at this point (and stay there forever now) lol
I have a feeling starting Mepron will tell you what you need to know.
About your kids- I get it. But you are there- and it obvious your love, which is really what they need (and food) I tell myself I'm pushing through this heck sometimes
so I'll be around later, without Alzheimer's, cancer, etc. because I do believe what we do here for Lyme, parasites, co-infections cleans us up for the future-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Hang in there Birdie! I get the kid piece-it is so hard. I am hoping the mepron will help you and you are on the path to better days. Thinking of you...
Posts: 238 | From new england | Registered: Feb 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Is there a way to test for the VOC's?"
I know there's air quality testing, but it's inaccurate (did it before and it wasn't as helpful as the MSDS).
If you're really curious, you can get the materials substance data sheets (MSDS) of all the materials used in the house WITH the ingredients list for paints and varnishes. MSDS only covers a partial list of ingredients.
If you have a problem with chemicals and there are lots of new items around you, that's all the answers you need.
We have a mud room that's dedicated to be an off-gassing room.
New items go in there for awhile or outside.
The sun and heat will help items out gas faster.
Also, some people are also sensitive to AFM products so you need to let those out gas for a couple weeks too if you use them.
New paint, carpet and construction can take YEARS to out gas. I'm not kidding.
I returned to the building that poisoned me after a year of it out gassing and being away from it and it STILL made me ill.
The website above says this:
"Although home screening kits (devices) are available to measure total volatile organic compound (TVOC) levels they are of limited use and won’t correct a VOC problem. Instead of testing, the first step is to conduct an inspection of your home for the common sources of VOCs. Sources that may be problematic include household furnishings which tend to off-gas more VOC’s when they are new. Possible sources include carpet, furniture, paint, plastics or electronic devices.
Once you determine the probable source(s) of VOCs, steps can be taken to reduce your exposure. If you are unable to determine probable sources, a professional indoor air quality investigator or an industrial hygienist can be consulted. MDH has developed a document, "Guidelines for Selecting an IAQ Consultant.""
I know of some industrial hygenists in N. California, but I really think it would be a waste of money for you along with test kits.
You already know the problem and it's been confirmed by the doctor.
It's just a very sad additional reality to deal with now. I'm sorry you're going through this.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Birdie- don't beat yourself up for crying in the bathroom.
I do that also. It help relieves the emotion.
These darn infections really mess up our emotions-not your fault.
Lots of hugs to you
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
You are doing the best you can. Don't be hard on yourself.
This is just a new learning curve.
Cutting down on your toxic load will help you emotionally and physically. There are some things you CAN control in all this.
If you haven't already, please consider switching over to natural, fragrance-free products.
Whole Foods carries a ton of them or you can order them online.
I only use baking soda, vinegar, borax, hydrogen peroxide (this breaks down into just H2O when exposed to light), lemons and Planet products (unscented).
Remove anything perfumed like scented candles, air fresheners, laundry products etc....
Even the natural fragrances, like concentrated orange oil, contain VOCs.
ALL these effect mood too.
It's healthy for you and your family.
Here are some medical papers to help you understand the illness better.
posted
Did you do the HLA DR test? Or just the urine test for mold? Because I've read that if there is no mold in your urine that means that you aren't detoxing it.
Posts: 845 | From Northeast | Registered: May 2011
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hi Birdie,
One may not be able to differentiate which infection is doing what to your body. Your body has just so many ways to tell you that it is sick, and often symptoms overlap.
Parasites and mycoplasma can cause symptoms, too.
Two years aren't very long for treatment. There may be an infection you missed, but keep plugging away with your LLMD, and you will slowly improve.
Posts: 1954 | From Illinois | Registered: Aug 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Birdie - I think babs treatment will help you a lot. If zith doesn't come through, there are similar drugs in the same family. Also, your doctor may want to work you up slowly - perhaps that is why he isn't starting you on Art yet.
re: your house - make sure you are getting enough fresh air inside. Does your HVAC have a fresh air intake? Houses today are built too tight (due to energy efficiency) but without a fresh air source, mold can grow, VOCs build up and people suffer.
We had to put a fresh air intake into our HVAC and it helped A LOT. Meanwhile, you can at least open your windows and get some plants (google as some are particularly good for cleaning the air but do be careful as mold can grow). Maybe an air purifier too. Definitely a dehumidifier since you have already had mold issues.
Re your kids - I have been where you are and I get it. It's not fun for anyone when you can't be there to do fun activities with your kids or even to just make them dinner or take them to school. I had to hire a sitter to take my kids to school which was probably the most depressing thing for me.
However, I realized that I didn't owe my kids a perfect childhood. I owed them the teaching of how to live their lives, and while sick I could model for them how to persevere, how to deal with adversity, and how to keep going when things get really tough.
These are such important life lessons that you can give them. Also, it allowed me to relate much better to my kids, who both have their own health conditions and gave me more credibility when I do so.
At some point in your child's lives, they will face adversity, and thanks to what you are doing now, they will be able to draw on the example you have showed them.
Posts: 1737 | From Virginia | Registered: Aug 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Birdie - I think babs treatment will help you a lot. If zith doesn't come through, there are similar drugs in the same family. Also, your doctor may want to work you up slowly - perhaps that is why he isn't starting you on Art yet.
re: your house - make sure you are getting enough fresh air inside. Does your HVAC have a fresh air intake? Houses today are built too tight (due to energy efficiency) but without a fresh air source, mold can grow, VOCs build up and people suffer.
We had to put a fresh air intake into our HVAC and it helped A LOT. Meanwhile, you can at least open your windows and get some plants (google as some are particularly good for cleaning the air but do be careful as mold can grow). Maybe an air purifier too. Definitely a dehumidifier since you have already had mold issues.
Re your kids - I have been where you are and I get it. It's not fun for anyone when you can't be there to do fun activities with your kids or even to just make them dinner or take them to school. I had to hire a sitter to take my kids to school which was probably the most depressing thing for me.
However, I realized that I didn't owe my kids a perfect childhood. I owed them the teaching of how to live their lives, and while sick I could model for them how to persevere, how to deal with adversity, and how to keep going when things get really tough.
These are such important life lessons that you can give them. Also, it allowed me to relate much better to my kids, who both have their own health conditions and gave me more credibility when I do so.
At some point in your child's lives, they will face adversity, and thanks to what you are doing now, they will be able to draw on the example you have showed them.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by WPinVA: ...However, I realized that I didn't owe my kids a perfect childhood. I owed them the teaching of how to live their lives, and while sick I could model for them how to persevere, how to deal with adversity, and how to keep going when things get really tough.
These are such important life lessons that you can give them. Also, it allowed me to relate much better to my kids, who both have their own health conditions and gave me more credibility when I do so.
At some point in your child's lives, they will face adversity, and thanks to what you are doing now, they will be able to draw on the example you have showed them.
LOVE what WPinVA said!
I only wish I had taught my daughter to value alternative medicine. I wish I taught her that western medicine is just one piece to getting better, and not to place it as high on the pedestal as most of us were led to believe.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Thank you all so much for all the great advice!! This has been a extra rough week for me, so I really appreciate the advice and support.
I am still waiting on the zith from my insurance. I will start as soon as the approval comes through, and hopefully that will help with some of the extreme dizziness and emotional stuff.
I have switched over to all natural household products awhile ago, but I do know that I have a huge toxic load, so obviously it's going to be a long road.
RC1, I have done the HLA DR test and the Real Time Lab urine test. I can detox mold but I was living in it most of my life so I would assume it can still make me sick.
I did ART testing yesterday and mold came back as being my biggest stressor right now. I SO want to believe in the testing but still am on the fence about it.
WPinVA, thank you for your kind words, they brought tears to my eyes. I have never been a fighter so this journey is really testing my will. I know my kids are happy that I'm at home and able to talk with them about their day and cook dinner but I wish for SO much more! Hopefully in time i will get better and be able to be more involved like I used to be.
Truly, Thank you all again for your support and suggestions!
Posts: 486 | From USA | Registered: Jan 2012
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posted
I was going to write that to me if seems like the most obvious case of babesia and I'm surprised your LLMD didn't pick up on that yet ! Hopefully you will notice some great results after babs treatment
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Thanks jackie. Yes, I'm hoping once I get going on the meds for babesia, I will get some relief. Keeping my fingers crossed!
Posts: 486 | From USA | Registered: Jan 2012
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posted
Keep in mind while treating that mepron can cause severe depression. It's called the mepron blues. Just wanted to give you a heads up.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Thanks for the reminder, jwall. I had read that before but had forgotten about that.
Posts: 486 | From USA | Registered: Jan 2012
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posted
I thought a lot of these same symptoms were the Babesia along, but my LLMD insisted I go on bio-identical hormones. He said my adrenals are being exhausted from trying to replicate the hormones from what I do have. I've been on the hormone cream for only over a week now, and don't feel nearly as weepy or hopeless. Are you taking enough magnesium? That helps a lot with the tremors. I wish you well!
Posts: 123 | From Pawleys Island SC | Registered: Mar 2013
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posted
Thank you Cragir1. I was thinking about bio-identical hormones, that's great to hear they are already helping you. I will definitely ask my LLND at my next appt.
I haven't been taking Magnesium incase I have proto. Maybe I will try some again and see how it affects me.
Thanks again.
Posts: 486 | From USA | Registered: Jan 2012
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree with everyone that you are the poster child for babesia. I also agree that treating it will worsen your depression so be prepared. Tell your family before you begin mepron that it may cause depression, but that will lift as you begin to recover.
Some other babesia symptoms are profound fatigue, brain fog, headaches behind the eyes, pain/cramping in the large muscles such as the thighs and buttocks, and hot flashes with or without sweating. You tend to get profuse sweating with babesia microti but not so with B. Duncani. You may also have what appears to be pinhead size blood blisters on your body.
It took me about 2 months to begin to lift out of the depression whan I started Mepron.
I don't think you need to take magnesium. Hopefully you don't have PR but it you do magnesium aids in building biofilm. If your symptoms persist and you begin to get insomnia, muscle twitching, joint pain or nerve pain, then you probably do have it.
Mepron is best absorbed with high fat. It would be a good idea to be tested for PR to be sure you don't have it because meeting the fat requirement for mepron would send PR into overdrive. Not taking the fat, if you don't have PR, would be a waste of money.
You might also consider rounds of Coartem later on. It really did the trick for me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Hi nefferdun, I will let my family know about the depression. I hope it doesn't get too much worse than what I already have. I just can't stop crying! So not like me.
I do have some muscle twitching but don't really have any of the other symptoms of proto, that I know of. It all get's so confusing trying to figure out what's what.
I think I will ask for the proto test at my next appt, I would like to know, so I can adjust my diet if I have it.
I alos have tons of anxiety and panic which are new in the last 3 months. Do those sound like babesia also to you?
Thanks so much!!
Posts: 486 | From USA | Registered: Jan 2012
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