posted
You are all better? These are the stories I need to hear. Because it seems I keep reason stories of how people are being treated for years without recovery.
I watched a YouTube video yesterday that said very few people actually recover, which I don't know is true or not. These are all questions I will ask Dr M when we meet.
I do thank everyone in this post for your feedback and support. Such great response.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
Myself. My LLMD told me You will be lucky to get 50% or 60% of your life back whether it would be neurological , cognitive , Musculoskeletal System etc .
Well I exceeded his and my expectations close to 100%.
Well maybe the reason people don't get better is possibly using antibiotics that are not supposed to be combined reducing its potency .
Using probiotic to close to antibiotics or magnesium .
And the LLMD missing another confection.
Important to keep a journal of symptoms and meds.
Then you know it's time to move onto another treatment plan.
Also myself I never backed down off of anything I took.
It was no worse than not being treated. I have been ridiculed by doctors , emergency room visits for heart problems , not being able to breathe ,etc.
Once I started treatment I told myself no more hospital trips. Nothing mattered to me .
I did not hinder my treatment . Some people say it was like a deathwish .
I saw it as survival. Everyday was another experience whether good or bad.
Prior to being treated and diagnosed with lyme and bartonelia .
I had meningitis in 2007 and a 50/50 chance to live . And for me it hurt like hell . And at same time I felt my body shutting down .
It was actually very peaceful for myself.
This is my experience of dying. So I looked back on my death bed and my decision to proceed no matter what treatment I was doing.
Everyone is different so please don't do what I did on being treated.
Posts: 238 | From Where | Registered: Aug 2012
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posted
You are a lot stronger than me. I am already a complete wreck. I would have never thought of leaving this earth but now I think about Ending my suffering all the time. It's surreal to even have these thoughts given where I was into life 8 months ago. So happy. Secure. Everything just great.
If I have learnt one thing about this situation it is how weak I truly am.
I cry off and on all day. For a grown man that never cues, I have shed more tears than I have in my lifetime.
I have destroyed my wife's life as well. She is worried she will lose me every day. We are both so scared. I think the scarier part is truly not knowing what happened to me. We have no answers. Only guesses.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Under Our Skin shows some of the sickest individuals. Not everyone has those symptoms.
"But I don't see symptoms I have like depersonalization or panic attacks listed. "
Not everyone has ALL the symptoms for Lyme or the coinfections. It's common to only have a few of them.
"So that leaves me thinking maybe it isn't under my skin, but indeed in my head."
I remember reading awhile back that within 48 hours of infection spirochetes from Lyme are already in the brain. They just stay there doing damage. That's why people with Lyme often have white matter in their brain.
My friend's only symptom of Lyme is it made her bi-polar. When her psych meds stopped working, I urged her to check into Lyme.
It took her OVER A YEAR to finally pursue Lyme after I mentioned it.
She has Lyme, babesia and bartonella.
"We have no answers. Only guesses."
You do have answers. In China they treat people with only 1 positive Lyme band. Canada and the US have horrible interpretation standards for the tests. They are totally arbitrary and are made so insurance companies don't have to pay for Lyme treatment.
You have Lyme and probably other co-infections. It may take you a year to accept it like my friend did.
It may be scary, but it's also good that you got some bands that were positive. There's your proof.
Amy Tan (the author) has neurological Lyme. She had a lot of white matter lesions in her brain. You can read what she went through here:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Please don't rule out for emotional perimenopause. I jVe Lyme, Bart and menopause and daily hold on . It's tough. Hoping to learn to let it go, but not thinking clearly every minute is hard. I loved my life, son, husbsnd, doing ondamed treatment and dr. H.
Something's gotta give. Lyme gave me many miscellaneous things, (hyponatremia, vtac...). depersonalization, anxiety, (already had ocd but not like this) you'll be ok, the worst is the up and down you think doesn't end. It has to sometime. Be well.
posted
Thanks guys. I guess I just have to accept I have lyme. It makes the most sense given the amount of suffering infinite no relief. None of it makes sense and I there is no other explanation.
I often wonder how bad this is gonna get. If I can't work we will lose everything. Not to mention the jnsane bills I am about to have to pay for treatment.
But from anyone's experience, will treatment provide me the much needed relief from these symptoms. It's all in my brain. I feel as though I am going crazy. I want my life back so badly.
I wish I knew what to expect.
Will keep you all updated as I learn more and get my appointment set.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
You will heal. Get to the right doctor.
Me and another friend of mine both had great responses to mental problems after we started antibiotics.
It was faster and more effective than any anti-depressants either of us had been on in the past.
It's amazing how much these infections can effect emotions.
Lyme is awful, but at least there's treatment for it even if it isn't perfect.
The leader of my Lyme group took a 2nd mortgage on her house to pay for Lyme treatment. This was 10 years ago. She was in a wheel chair and couldn't work at all at the time.
She still has her house and works full time now and had more energy than anyone I know. She was able to get out of the wheel chair after a year.
She's a single mom and is able to raise two kids.
You CAN get through this.
I'd much rather have Lyme than cancer. My friend just got diagnosed with stage 4 cancer in several parts of her body. This is after battling breast cancer a few years ago.
She's only in her 30s.
Posts: 2839 | From California | Registered: Jul 2012
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posted
You nor anyone inflicted of this disease ruined the life we had.
It is the guidelines that ruined lives , the doctors who listen to the IDSA.
I Would tell my LLMD I miss my job, my life , my enjoyment.
And he would tell me that is who you were , this is you are now.
I like everyone else who was afraid of losing everything or lost what worked so hard for and especially pride.
Then 1 day I realized it's only stuff , and I'm going to keep my pride.
That took a long time to accept
Treatment is like going forward 1 step then falling back 10 steps.
Appreciate all the little things especially having 10 minutes of sleep , or few minutes of not having pain or the ringing ears is not loud or countless other symptoms have slightly diminished
Don't get discouraged when new symptoms appear.
Make every effort to keep positive attitude .
Then one day it's like someone pushed a button and it's the start of feeling normal.
It is a slow and tedious process.
Posts: 238 | From Where | Registered: Aug 2012
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posted
Thank you so much. But here's on thjg I notice around here both on the forum and through PM. I keep hearing the words "find the right doctor". Why not simply tell me who that is? It's a maze trying to figure it out.
I'm going to see doctor M in NY. I have no idea if she's the right doctor. I'm shooting blind and this is not only costing financially as a Canadian I have zero coverage in USA, but the emotional and health cost is far greater. I don't have time to go from doctor to doctor.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
You have to find the right doctor for you.
Each doctor has a slightly different approach. Some are more conventional, some are more alternative.
As for price, there a couple ways to approach this.
A lot of people just start with 1 doctor and see them until their treatments doesn't agree with them, then move on to another doctor (could be the first month, could be a few years down the road).
I saw 4 doctors in the first couple months I was ill and compared treatment plans until I found the right match. Even one very well recommended doctor didn't work for me (I was allergic to 6 things she gave me, her approach just didn't work for my body).
I'd post in the seeking doctors forum and try to find a support group to attend if there are any in your area. See if you can get more details from former patients. Also contact ILADS.
In the US very few Lyme doctors actually take insurance, so we've all been bit by the financial bug. Even some meds aren't covered.
It's seriously similar to what happened at the beginning of AIDs/HIV. Doctors and insurance just don't know what to do and there are very few experts.
Posts: 2839 | From California | Registered: Jul 2012
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posted
It took me 3 LLMD doctors first 1 I thought was great. She is and was high up on the board. Not going to bash her here.
She took my money ,listened to me and what I had to say. Took some blood work , then when test came back negative.
She never spoke to me on what else to pursue ,unless I paid for another visit.
Then the following year I had another LLMD and saw my blood work ,took some more blood.
Then some showed a positive and others were used as a marker
Then recommend I go on long term iv. But that would have been another few months because he had to recommend me to another llmd .
But that same weekI also had another appointment with another LLMD.
I told him about other LLMD and iv , and went over the pros and cons of iv versus oral antibiotics and natural supplements.
He told me make up your mind now call that other LLMD and get whatever results he had . I want them in my office in a few minutes.
Well I chose him because of his honesty , his compassion he had with me . He was strict ,if you don't do what I say you will be wasting your time ,my time as a doctor and another patients time who wants to get better.
I was fortunate to have him , I am grateful for what he had done for me , he was my doctor and became my friend.
I was a person ,a human , spoke to me. called me by my name knew everything on my chart . he devoted his time towards me .
I felt like I was his only patient .
As far as doctors go find a support group close to home.
Meet people talk to them . That is the best way to find a doctor.
Share your story with them listen to them , it will be then you know that's the doctor I want
Posts: 238 | From Where | Registered: Aug 2012
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posted
Well the doctor I am trying to get into (Dr M), is proving to be hard to get a hold of. Phone calls and emails have yielded nothing thus far. Will keep trying..
On another note.....how's this for a sign.....
5 minutes ago I just pulled a tick out of my hair after going for a walk with my daughter.Not sure how he got there, but just made it painfully obvious how easy it would be to get infected
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
"5 minutes ago I just pulled a tick out of my hair after going for a walk with my daughter."
Birds carry ticks, and so there are ticks in their nests. White footed deer mice carry ticks, and they live in trees, among other places.
This means that ticks may land on you from above.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Oh dear. Did you save the tick? You can get it tested for diseases through Igenex.
However, testing is not perfect. I know someone where the tick tested negative, but the person tested positive.
It might be worth it to send the tick in though. If it's positive for any tick illnesses, you will then have more information to work from.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I Didn't keep the tick. Testing him woildnt do anything as he didn't bite me. Was just in my hair. I pulled him out and I let him walk all around my hand for a while So I could examine him and make sure it was a tick and it definitely was.
I have no idea how he got in my hair. We do love in a rural area but I always assumed if I had lyme it must be from mountain biking. Turns out that may not be the case. This is right from my backyard.
Closest support group to me is about an hour away and turns our there are others from my little town there.
I should have kept the tick just to show my wife. But she will believe me. I tried to take a photo of him with my iphone but wouldn't stay still and zoom couldn't focus in.
Put property is packed with birds and bird nests and feeders etc.
Anyways. That's the first tick I have ever seen. Well that may not be true. I just may not have paid any mind to it and just called it a bug before. But now that I know what it is I knew exactly what i pulled out of my hair. Doesn't mean it was positive for bacteria though. But never know.
Appointment made for June 24 with Dr. M in NY. Apparently I got very lucky as it's usually a 3-4 month wait.
I hope to end this nightmare soon. If it's Lyme, then let's get it treated. If it's not, then back to the drawing board I suppose but I am out of medical options I think.
We have even "fired" our family doctor over this who refused to order a confirmation test on my Igenex results, as she simply said,
"there is no Lyme in Canada!"...
She pointed to her diploma from Med School, and said
"Sometimes you need to trust your physician"...
To which my wife replied
"And sometimes you should trust your patients when we tell you that Doctors are uneducated in Lyme disease"
This same doctor told me that any lab that I would have to send away and pay for must be a scam (Igenex), and that LLMD from the US are "Charlottans"
Also, in 2 weeks I also have an appointment with a LLND here in Ontario but she is unable to prescribe anitbiotics. She ordered the confirmation epitope tests for me, so should have them by then.
Lastly, I for the last 2 weeks I have been following Buhner's protocol. I figure it can't hurt whether I have Lyme or Not.. I will continue to do it in the hopes up bumping up my immune system.
Any other advice on natural things I can take?
Also, In Buhners Book, he mentions a stephania root tincture for eye problems (a bad one for me).. but I couldn't find how to make this tincture. I got all these wood chips of stephania and put in in a mason jar filled with Vodka.. no idea if that was right, but says to wait 6 weeks? I don't want to wait.. Anyone else done this?
Keep fighting!
Posts: 53 | From Ontario, Canada | Registered: May 2014
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You are getting wonderful advice on this thread. Only things I might add is keep an open mind about having lyme and ANY/ALL of the co-infections.
Find a LLMD you trust and cover all the co-infections and corresponding treatments with him/her. That way even if you have negative test results(which often happens with lyme and co's) you will get appropriate treatment based on your symptoms.
Believe your symptoms, believe what your body is telling you, believe your LLMD and you will get better.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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posted
You can tell your ex-family doctor to take a look at www.canlyme.com
Also there's a bill going through in Canada now to get long-term treatment allowed.
Re your question about eye problems, what stopped all my Lyme eye problems has been to drink mangosteen juice, an anti-inflammatory juice you can find in healthfood stores and online. I like the Mango-Xan version as it's the most tart.
You are normal to have the thoughts and feelings you have. This is a lot of new info and it takes time to absorb. Just know that as you treat, you will start to feel better.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Thanks guys. We actually did refer the doctor to canlyme but she didn't care.
About this juice. I take several supplements that are anti-inflammatory. If it's that property that helps the eyes I'm not sure it will work for me considering how many things I take already for inflammation. Curcumin being the best one.
But with that said, I'll try it. Lol. I'll try anything right now. I suffer from blurry, hazy vision. Feels like there's a film over my eyes all the time. I have focus problems. Burning as well. Constant reminder that I am ill.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Congratulations on your appointment with a lyme doc in June!
Be sure to make a very complete list of symptoms to take to the doctor. Use pages 9-10 of Burrascano Guidelines to help you.
And, take copies of all lyme tests and other recent blood tests, other tests. This will help the doctor with the diagnosis.
I expect you will be very happy when you come out of this appointment. Most people feel like they died and went to heaven when they finally see a doctor who understands this disease, believes everything the patient says, and even brings up or finds additional lyme symptoms that the patient has.
I wish you all the best. And, I think you did a great job with the ex-family doctor. Good for you! Always try to educate. Some will hear you and some won't.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I take various anti-inflams too and I notice that each one does something different. Like tutmeric eases joint and muscle pain. And yes, I have done them separately to see what they affect.
The mangosteen juice is the only anti-inflam supplement that I take that affects my eyes and stops the eye symptoms. It also emptied out my sinuses when I first started, and regularizes the intestines.
Now is a great time to learn about all this so you will be better able to follow what's going on in the appt. Treatment occurs in three areas: kill/deter the organisms, detox, and fortify the body.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
First, double check your symptoms and try to eliminate you are not sure about.
Second, are these panic attacks caused by any events?
Third, try to find other explanations for your symptoms. For example muscle trigger points can cause many strange symptoms like balance problems, vision, pain etc. and few know about them. Maybe not any of your symptoms, but that is a good example.
Fourth, were you taking that medication before or after your symptoms? Why are you taking it?
The lyme tests and treatments are very up in the air. I have no idea how to prove infection or if infection is curable or easy and in what case.
You may want to avoid experimenting on yourself and keep an eye on Lyme disease developments over the next year. There should be some new antigen tests that may help.
Be careful jumping into treatment thinking you have nothing to lose. Some antibiotics are safer than others and many are normally given alone or short term, only a few are commonly given long term for other conditions. Avoid Bactrim as it has a high incidence of adverse effects. Avoid IV for now. Avoid any antibiotic that causes tendon damage. Avoid anything like rifampin which is not common.
Consider waiting for better tests and a cure.
I tried lyme treatment for my muscle pain after a doctor gave me an igenx test. I was skeptical, but went to the Lyme disease referral and decided to try treatment.
I was prescribed bactrim, rifampin, azithromycin and minocycline.
A few weeks in I noticed red spots on my skin and later got paresthesias all over my body like cold water, burning and stinging.
I took the antibiotics for 6 months, except the bactrim.
4 years later I still have the neurological problem and no answers. It didn't cure any of my other symptoms.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Friday13...
You have already received an overwhelming amount of advice here, so I just want to offer that I know of someone in Ontario who was very ill with Lyme and has become well.
I'm sure she would share with you her experience and the doctors in her area who have helped her.
PM me if you would like to contact her...
Also, I have had 100% of the symptoms you describe (and more), was ill for 8 years and homebound for 5, and am 100% well now.
Don't EVER give up...
Posts: 2072 | From Earth | Registered: Jul 2013
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posted
Thanks everyone. I figure I have nothing to lose by going to the LLMD whether I have lyme or not. I will let the doctor make that decision despite all the warnings I have received from medical professionals here in Canada. I keep getting told these LLMDs just prey on the suffering like vultures. Even I am still skeptical but it's an avenue I need to explore.
Applewine. I'm sorry to hear your symptoms did not resolve. The only symptom I had before the drug was an out of the blue panic attack. Then I was I kept having these weird attacks where I get tunnel vision and then I get I feel a surge if fear. I can't focus. And feel detached from my body. It's quite strange. And very scary. The doctor prescribed klonopin to me to which I am now dependant. I have continuously degraded as the months. They have tried 3 different antidepressants as well but nothing seems to help.
So could many of these symptoms be drug related? Perhaps. I don't know. Doctors say no. But who knows. That is my biggest fear. Getting misdiagnosed. But I have to pursue it especially given I had positive bands on my igenex test.
It's difficult for me to accept that at 40 years old with no change in my life, Active and fit and happy, that I would suddenly develop a mental illness or anxiety disorder. Sure I suppose it's possible. And if the LLMD doesn't think it's lyme then I will continue trying to work on it as a mental illness as I have been. (Spent thousands in therapy)
At the end of the day on sept 12, 2013 my life was great. On Friday the 13th the next day my life changed and has been getting worse. I want my life back. My family and friends want me back. And most if all, my 2 young children need me back.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Well I got my Epitope Confirmation Tests back today.
Negative for Band 31 IgM, but Positive for Band 31 IgG.
So based on the tests and my symptoms it is looking like I have Lyme. I am terrified, and everything I worked so hard for is about to come crashing down. Pay so much in taxes in Canada to pay for our free healthcare, and now I'm going to have to go broke getting US treatment.
But the money is not the biggest worry. The biggest worry is treatment not working.
I am so scared. I was never depressed a day in my life until a few months ago. Was so happy before all this. Now I just want to die. Have even been to hospital twice on Form 1 lockdown for threatening suicide. What has happened to me?? This is crazy.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
Friday13 - We are from the Niagara region of Ontario.
3 years ago our daughter developed every symptom you have listed in your earlier post, including sudden onset anxiety/panic attacks (caused by bartonella). She had a negative ELISA here and was denied further testing. She had a couple of IND bands on the Igenex WB and tested positive for bartonella hensalae. Our PCP also denied lyme or bartonella, and even though she was experiencing every symptom of encephalitis and bartonella he still insisted that she only needed Ritalin, clonipin and a good spanking.
Good for you for figuring out your problem and finding the doctor to help you solve it. Dr McS has been featured on CBC "The Current" a couple of times. The documentaries were good - you can maybe find the podcasts.
Some many people trust their PCP with their lives and will find no help. You are your own best advocate. Not even the LLMDs know everything, but they will get you on your way.
Our daughter underwent treatment with Dr P (the other ILADS recommended LLMD in upper NY state) in Buffalo NY for 2 years and was weaned from abx in Apr 2013.
I was hesitant to withdraw all treatment and continued on my own with Buhner's full bartonella protocol, along with some herbs that also treat the protozoan infections.
Both my daughter and I have healed using long term, low doses of Buhner's herbal protocols. I have used no antibiotics myself. Our daughter has had further improvement above and beyond what we experienced with antibiotics.
Keep active, but not to the point where your immune system is compromised. Too much exercise will hurt as much as not enough. You need your immune system to be functioning properly to help eradicate infection.
If you have bartonella and plan on using Buhner's protocols, please purchase his books:
Healing Lyme Disease Coinfections: Mycoplasma and bartonella
Herbal Antibiotics for resistant bacterial infections
"Glyphosate, the active ingredient in Roundup®, is the most popular herbicide used worldwide. The industry asserts it is minimally toxic to humans, but here we argue otherwise. Residues are found in the main foods of the Western diet, comprised primarily of sugar, corn, soy and wheat. Glyphosate's inhibition of cytochrome P450 (CYP) enzymes is an overlooked component of its toxicity to mammals. CYP enzymes play crucial roles in biology, one of which is to detoxify xenobiotics. Thus, glyphosate enhances the damaging effects of other food borne chemical residues and environmental toxins. Negative impact on the body is insidious and manifests slowly over time as inflammation damages cellular systems throughout the body. Here, we show how interference with CYP enzymes acts synergistically with disruption of the biosynthesis of aromatic amino acids by gut bacteria, as well as impairment in serum sulfate transport."
Don't be scared. I know how you feel.
The whole time our daughter was in treatment I was suicidal and in pain as well. It is so hard to see past, but it is all due to brain inflammation and neurotransmitter disregulation caused by your infections.
Decrease your intake of inflammatory food - wheat, gluten, casein etc., anything processed really.
A couple of good diet protocols include Terry Wahls and ThePerfectHealthDiet:
This is a good site as well because, like cancer, lyme and the coinfections require suppression of the immune system to proliferate. Support the immune system and they will gradually resolve:
If your immune system is functioning optimally you will recover.
If I was you I would start on LOW (1/4) DOSES of everything listed under Buhner's bartonella protocol on his webpage, since you already seem to be gravitating in that direction.
Japanese knotweed is the only herb we are able to take at suggested dosages. All the rest cause us significant herx reactions at higher dosages.
CanadaDrugs.com will fill prescriptions written by Dr McS and deliver them to your door. Put all payments on a cash back credit card so you can at least get some money back.
We ended up rolling our debts back into our mortgage when time came to renew. We will catch up on the mortgage later. It ended up costing us about $30,000 for her treatment, so about 1/2 of a university education or all of a new car, which is doable and was so worth it. Mine - treating with herbs, has cost next to nothing.
Keep your family close to your heart. Accept their support. They need you and YOU WILL RECOVER. WE HAVE.
We continue with the herbal protocols and will do so for at least another year, but our pain, cognitive, neurological symptoms have all resolved. Our daughter has also recovered from her symptoms of Asperger's, Tourette's, ADHD, raging, social regression, executive and cognitive impairment. It was all caused by bartonella (and possibly an unidentified protozoan) infection.
Paradigms have to change and I think that is what these illnesses are all about. Humanity can't keep living the way we have been. Destroying the environment, spraying toxins on our food, injecting our children and ourselves with immune destroying vaccinations and adjuvants. We need different attitudes, different ways of looking at things. We are being forced into change. Kicking and screaming.
You are a competitor. You know not to look back. Keep your eyes on the prize.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Friday13, you have gotten great advice.
I just wanted to throw in that the unfounded panic attacks may very well be Bartonella. Been there and had to be diagnosed clinically for it.
I also wanted to let you know that people DO get well from this, and I am one of them.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
friday what up,, let me sum it up for you, ive had the same symptoms that you have, and let me emphisise especially the d/p d/r thats the worst, ive been frying and in lala land with severe panic attack and vertigo and a whole list of other ****, ive never treated once just cause the neuro, stuff but i want to get better also,,, do me a favor if you start treatment and get relief from the neuro and neuro only thats all i care about please let me and putnam no if it helps i dont think anyone else on this board complains more than us about d/p d/r p.s. its lyme
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
i guess i really didnt sum up nothing, but if you need to talk to someone who completley understands let me no ill give you my no. i could tell you what ive been through and you might feel better, im frying hard every second of my life and im still kicking lifes ass,,, hope you feel better
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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I am just trying to take one day at a time right now. When I would mountain Bike Race before I got sick, I would get into a Cadence and just flow through the trails. I'm just trying to find my Cadence now despite the symptoms. Trying to pretend I'm in a long haul race and everything hurts, and I need to breathe through it, find my Cadence and push..
I can only control how I react to it at this point, and I have spent 8 months reacting poorly as if my life is over. From now on I need to start viewing this as a race. Just temporary until I eventually cross the finish line. I WILL get my life back. I WILL get over this. I WILL be the husband and father I was...Better in fact!
Posts: 53 | From Ontario, Canada | Registered: May 2014
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Rowingmom: you are my HERO. Thank you for giving back, and helping others.
Friday13, one step at a time. It's okay to be sick. It happens. Whether it's cancer, a major surgery, Parkinsons, or Lyme disease.
At some point, a family gets hit. It can be a lesson. It can bring a needed change. It's life.
Hang in there-- hope you can start some Lyme and Bart treatment soon -- good thoughts--
-------------------- 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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Friday you still there? I lived in Windsor 8 years back in the early 90s loved it there...
Anyways, I can put you in touch with the best Canadian LLMD out in BC. He will listen to you, explore your symptoms, and will point you in the right direction either with a treating doc in CA or the US.
The great thing about this doctor is he charges you NOTHING! You can call him when you want or email and he will respond. Anytime.
It is a must that you need to confer with him get back to me or send me a PM.
PS Ive been where you are, I am around the same age as you and was extremely physically fit before sickness. I know the panic attacks well, and you are right as to say out of the blue at age 40 is not normal.
But you can beat this.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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You will get your life back and you will be even better; more aware of what your body and the bodies of your children need to be healthy and to stay healthy.
My 17 year old son comes home every day after school and cooks himself up a big pan of organic kale with grassfed butter. He knows it's good for him because his acne clears up when he eats properly. Neither of my kids now bat an eye at eating sweet potatoes, beets and greens for breakfast.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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I would look for some kind of trigger; Certainly a tick, or other insect bite could directly give you Lyme and/or any number of coinfections, but these might all be red herrings. My assessment of anxiety and panic is that it represents a failure of the liver and kidneys to rid the body of the breakdown products of neurotransmitters, hence the breakdown process becomes cluttered and an over abundance of neurotransmitters results, leading to overstimulation of receptors. Direct insults to the liver and kidneys can do this, such as chemical toxins and heavy metals. This begs the question: Did you have any dental work/immunizations/or tattoos done in the month or so prior to this syndrome?
Next, has anyone assessed other wellness factors? These would include metabolic profiles, Thyroid function tests, testosterone level and homo-cysteine level, as well as autoimmune markers a cholesterol panel and a 25 hydroxy vitamin D level? These things rise to critical importance at the age of 40.
On a personal note, I experienced panic disorder like this 5-6 years ago, so I can understand how you might feel like you are at the end of your rope. The intervention that seemed to afford me relief and I still take it daily was N-Acetyl Cysteine. This is a precursor to glutathione, one of your liver's most potent detox enzymes. I had taken it in small doses occasionally prior to the panic problem, but when I upped the dose to three times daily, giving me coverage around the clock, so to speak, the anxiety was almost completely lysed. It seems to me you could find a doc who would at least run the tests mentioned above to get the ball rolling, but if not try www.lifeextension.com, they offer some reasonably priced testing.
Posts: 60 | From Maine | Registered: Jan 2012
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Surprise.. Thanks for the kind words. I am trying to keep fight
Rowingmom..Thanks for the Links. You are awesome.
Docluddite. There really isnt any trigger. That's the issue. I feel poorly all day, every day. There are some times where it's better than others, but I have not had a "good" day since October. I think I had some dental work done prior, yes. One filling, and a cleaning. Not sure of the timelines. WOuld have to look it up. No Tats or Immunizations though.
I have had bloodwork done for thyroid twice as well as a ton of other bloodwork. As well I have had an MRI which showed 12 brain lesions which sent me down the path of MS. MS was ruled out by specialist but I still don't know what these 12 lesions are from. That's concerning. I have not had testosterone or Homo-Cysteine level done though. Or choloestrerol levels.
I have had many tests and doctor said she ruled everything out, but I know she hasn't. So I took matters into my own hands. I had asked several times to see an Endocronologist but she would not refer me.
I am currently searching for a new doctor but Its hard to find new doctors accepting patients in Canada. And going to a walk in clinic is a quick 5 minute visit meant for simple problems.
If it's all in my head and just a panic disorder that came out of nowhere, would I not have ups and downs? Would I not have good days and bad days? I have bad days every day. I truly suffer from the time I open my eyes until the time I get to sleep. Anxiety, Terrible vision problems that I can't even describe properly, Anxiety, panic, Brain fog, dizzy spells, muscle twitching and more.
I have said to my family all along. Maybe it could be all in my head. I worry about a misdiagnosis for sure. All I know is I am not well, and truly suffering. I went from the happiest man, to a man that wants to go to sleep and not wake up. Not because I hate the peices of my life, but because I do not want to suffer anymore. I have everything to live for, and the foundations of my happy life are still here, but I can't see past the suffering.
I have been going round and round for 9 months trying to figure it all out. I have not responded to Therapy or drug treatment for mood disorder (but maybe I need to give it more time, as I have been stubborn about the drugs) I tried Lexapro, then Pristiq, then Paxil, and have been on Clonazepam the entire 9 months, although up and down with dosing. Currently trying to taper off again. I hate this drug!
Could it all be anxiety? I suppose. I am open to anything. I just wish I had answer and could treat it. I feel as though the medical field is failing me. Why is this so hard to figure out? It's Been 9 Months!!
Should I try another anti-depressant? Should I up the poison Benzodiaepine I am taking? Should I pursue Lyme? Something else? I just have far too many questions with no answers.
I had an LLND see my Igenex results and say it was suspicious for Lyme, and my Epitope IGG came back positive, so that's what led me here.
I'm confused and lost. I just want some relief. I would give anything for one single good day right now. A day that I could be the husband and father I was. A day where I could look at my wife and family without tearing up. one single day that I could just not think about this or feel it. Just one...
Will check back in Monday after LLND appointment and let you all know what she says.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Friday13:
As well I have had an MRI which showed 12 brain lesions which sent me down the path of MS. MS was ruled out by specialist but I still don't know what these 12 lesions are from. That's concerning.
Anxiety, Terrible vision problems that I can't even describe properly, Anxiety, panic, Brain fog, dizzy spells, muscle twitching and more.
Could it all be anxiety? I suppose.
Lyme Disease causes you to be deficient in magnesium. The Lyme bacteria live within our cells, using the magnesium for themselves.
Everything in the cells runs on enzymes, which need magnesium to work properly. When the cells are deficient in mag, they cannot make energy properly, and we suffer.
Symptoms of low magnesium include Anxiety, depression, insomnia, panic attacks, agoraphobia.
Photophobia, especially difficulty adjusting to oncoming bright headlights, Loud noise sensitivity from stapedius muscle tension in the ear.
Premenstrual irritability, menstrual cramping.
Magnesium deficiency symptoms involving the peripheral nervous system include numbness, tingling, and other abnormal sensations, such as zips, zaps and vibratory sensations.
Magnesium - treating a deficiency http://drmyhill.co.uk/wiki/Magnesium Spend some time looking through this site, Dr. Sarah Myhill has so much good information.
I can tell you what the brain lesions are likely from. It involves excess fibrin and clotting.
If your cholesterol levels are high, it's because the Lyme bacteria use the cholesterol pathway to function, and the body makes more to compensate.
The blood test markers for inflammation are probably high, due to the ongoing systemic infection.
What you can do: Read about magnesium deficiency and how to supplement. You need a good level of Vitamin D for the magnesium to absorb, so you may need D3 supplements.
Boron helps to keep the kidneys from peeing out magnesium. I found that my fingernails improved dramatically when I started taking it.
You also should read about Essential Fatty Acids, like fish oil. This improves cell wall integrity, so the cells function better. The liver uses EFA's when making Glutathione, which it needs to detoxify poisons.
If you google for anxiety and magnesium, or fish oil, you can find many articles and studies. I think that supplementing magnesium and Essential Fatty Acids will improve your mental status.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Nutrient and mineral deficiencies caused by parasitic infection is the basis for Buhner's nutritional recommendations.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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Very interesting on the Magnesium. But I take Magnesium Chelate 600MG per day, as well Omega 3 Fish Oil, so I don't think I am Magnesium deficient. However, I have only been doing this for about 3 weeks. I TAKE so many supplements every day trying to cure myself. My office looks like a pharmacy. No joke. And I just got another order today that's supposed to treat Bartonella. I figure I'll take this stuff before my appointment.
I also take a bunch of stuff for anxiety. Nothing seems to work yet though, except stomach pains and the runs..lol
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Frida13 you say I been going round and round for 9 months trying to figure it all out. I have not responded to Therapy or drug treatment for mood disorder
You have been given some great advice. Try to keep a chart of some sort with meds you take and how you feel and rate 1-10 on symptoms ,even rate when dont take anything.
Do this everyday, this way when you go to a doctor you have everything documented and will be able to see a pattern .
No sense in taking unnecessary meds and wasting money and quite possible another tickborn illness that needs to be addressed first.
Detox , watch when taking probotics with antibiotics usually 1 hour before or 2 hours after . for when taking magnesium 2 or more hours away from antibiotics.
This pattern has worked for me. I have gotten close to 100 percent from lyme and bartonelia . I did this for a long time with my protocol.
My LLMD told me if I'm lucky I would regain about 60% of my life back
I noticed little improvements in a month or two, if there were no improvements , well time to reasses your protocol with doctor. Go over your chart and see what worked or helped . This way doctor can tweak or take you off of med and see if he had missed something.
Posts: 238 | From Where | Registered: Aug 2012
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Thanks. I do plan on starting a chart of my symptoms. It's good advice. I take so many supplements right now it would be hard to say what any of not does individually.
The only thing I have noticed after 3 weeks of doing buhners protocol is that my body temperature seems to have risen to near normal levels. I was consistently in the 96s. I am now high 97s. I have a bunch of stuff on the way to start buhners bartonella protocol as well as thats the anxiety and panic one if anything I assume, so I figured it was worth a shot. What do I have to lose right?
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
"But I take Magnesium Chelate 600MG per day, as well Omega 3 Fish Oil, so I don't think I am Magnesium deficient. However, I have only been doing this for about 3 weeks."
Magnesium chelate? That sounds good, as the "ate" forms of mag absorb better than the "ide" forms. Magnesium oxide is cheap and manufacturers put it in their multivitamins, but it does not absorb well.
Dr. Sarah Myhill recommends magnesium injections, saying that they work better than oral forms. I recently read a post here from someone who had gotten a magnesium intravenous, and she said she felt ~normal~ for the first time afterwards.
You may need to take large doses of magnesium, divided throughout the day...for a long time. Too much magnesium will give you loose stools.
Magnesium Oil is not really an oil, but a concentrated suspension of magnesium that you apply to the skin. I tried this at one point, applying it to my legs. My skin felt sticky like after you swim in the ocean.
Epsom Salts are a mineral compound of magnesium and sulfate. When dissolved in water, this is absorbed through the skin, by means of a foot soak or a bath.
I'm not saying this will cure you, but it should help to relieve some of the symptoms.
Regarding the fish oil, I have noticed a reduction of headache, body and joint pain when I take certain pharmaceutical quality fish oils, especially those with very high levels of EPA. Lower quality fish oils give me gastric upset.
Did your stomach pains and loose stools begin when you started one of the supplements? I've learned to start one at a time, and see what happens.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
If you did indeed have a filling done in the months prior to October, then that should be given strong consideration as the trigger. If the filling was a silver/nickel/mercury amalgam then it's a lock, in my book. The reason it started in October is that that is when natural vitamin D levels start plummeting, and with low vitamin D, your liver will not be able to keep up with the amount of mercury coming off the filling. Look up erethism. Has your doc tested your vitamin D level? If so what was the #? If the number falls in what is considered the low end of the normal range, most docs who aren't vitamin D literate will call it normal. The number should be greater than 50 ng/dl. They may measure it in Nano-moles in Canada...
Posts: 60 | From Maine | Registered: Jan 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
DocLuddite talks about how low levels of Vitamin D affect the liver's ability to remove mercury from the bloodstream.
Low vitamin D also affects how well the body can absorb magnesium. Since people with symptoms of Lyme Disease are already low in magnesium, low vitamin D can make symptoms worse.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Hi Doc, The filling was not made of metal. It's a white material. I have no metal fillings in my mouth. I have a doctors appointment set for June 10, where I will ask for more of these tests you all are recommending. I did just check some of my bloodwork I have had done, and I have a high Absolute Neutrophils Count. Just a little over the range limit at 6.610. Proper range is 2.0 - 6.3. There are many reason this could be high such as stress, certain Meds, Bateria Infection.
Also, my Microalbumin/Creatinine Ratio is a little on the outside limits at 2.0. This could indicate Kidney damage.Common causes include diabetes, high blood pressure, and autoimmune disorders.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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