Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
I have been diagnose with mold and lyme disease for almost four years now. For the last three years, I have been driving three hours to see a dr of integrative medicine who is using the Klinghardt protocol to treat my lyme and co infections. Fortunately, we have the mold under control. When all of this started, my only symptoms were nerve pain in my teeth and fullness in my left ear. That was in 2006. I saw a little over thirty drs and received 15 diagnoses before it was confirmed I had mold and lyme. I have been receiving treatment from my dr, with whom I have great respect and confidence in, for almost four years, with the exception of one year when I went to another facility that told I neither had lyme or mold. So back to see my original dr. Today as I write this, I now have many more symptoms and more recently, have abdominal discomfort especially after eating, bloating (I look 4 months pregnant), ear pain, back aches, neck aches, headaches, chills, burning and numbness in my feet, tingling sensations in my hands, severe pain in my teeth (I have seen numerous dentists about this and have no dental issues, and had all the mercury removed 2 years ago.), burning tongue, and fatigue.
I see my dr every three months. He tells me things are moving in the right direction. But I don't feel any better! And why am I developing new symptoms? Is it normal to develop new symptoms during treatment? Is this a good sign? He also told me my stomach bloating and discomfort is because I have strep (bacteria) in my gut. I want to believe him, but so far, I have not seen any improvement. I had an endoscopy and colonoscopy which showed some erosion in my stomach lining and I do have diverticulosis. My dr told me that erosion of the stomach lining doesn't cause pain.
He also told me that I needed emotional therapy. There is an emotional component to all chronically ill patients and the reason they don't get better is because their emotional issues need to be addressed. I receive emotional therapy as well. So far, I have received 6 treatment and seen no improvement.
I am worried and becoming very concerned. I cannot work and my job is to take care of my sick father. I have very few friends, single, and very isolated. I joined this group to hopefully receive encouragement, support and maybe I can help someone.
My question is, is it normal to experience more symptoms while receiving treatment? After taking my supplements in the morning, I feel very bad, in fact, I have to lay down for a while. It seem like every year I develop a new symptom and I don't know what is going on.
Please advise.
Thank you for listening.....Joyful
get a diagnosis. I am glad you found someone who found out what you have. As to your question,
'is this normal? developing new symptoms during treatment' and such, In my experience, it seems that nothing is 'normal' when it comes to Lyme. People react differently to various protocols and various alternative doctors treat in different ways. Some may want to treat for heavy metals first, and then Lyme later on. I believe Klinghardt uses muscle testing and some doctors don't use that. Some rely on antibiotics. The list goes on. I like reading the book, "Thirteen Alternative Doctors Talk About Lyme" by Connie Strasheim. (I think I have the title right. That gives a person some idea what goes on. Also, have you come across any support groups where
you live? Sometimes they can be helpful in sharing information.
As to my own experience, I have been treated for the past 15 years. I do fairly well.
I have not done the Klinghardt protocols. My doctor used some antibiotics early on which didn't
agree with me. My digestion was VERY compromised. I had acid reflux and IBS. I had candida.
I had to clean up my diet. I stopped drinking coffee and alcohol
. Went off of refined flours and sugar.
Some of that helped. A year and a half ago, I went off of gluten and most grains. Cut down on
dairy. I saw the most improvement with doing that. I'm basically a vegetarian. I took digestive
enzymes and still do. I drink green smoothies in the morning. That helped settle down my
system. Have you tried any dietary changes? That's a big piece of the puzzle. Of coarse, everyone finds their way with this. I still struggle with keeping my eating healthy. I did most of this on my own. My doctor was not really focused much on that part of treatment.
I was treated for some mold with inhalers. Early on, yes my symptoms would get worse.
I have to do a lot of metal detox even with having my fillings out. I read Andrew Cutler's book.
I don't want this to get too long. It sounds like you haven't yet been treated for the Lyme?
That maybe your supplements are too harsh for your stomach. I'm just guessing. Are you
supposed to take them with food? You may have a bunch of food sensitivities as well.
My two cents worth is keep educating yourself, keep asking questions. You can always
look for a second opinion if you're able to. Good wishes with this. and keep us posted..
Thank you for your reply. I was diagnosed with mold first, then chronic lyme. It took me a year to find a good dr. He had to treat me for the mold first, before he could begin to treat my lyme disease.
This March I was told I no longer had mold so we continued with lyme treatments. He has had me taking quintessence for lyme for a year and a half. However, it may not have been doing much good until the mold was gone. This year I also began working on emotions. My dr has introduced some new therapies to his practice. Despite all of that, I still feel crappy. I am low on energy and become easily fatigued. In the morning when I get up, I feel like I have been beat up, I literally ache all over. My head feels like I have had a hangover, my back and neck ache and my teeth, tongue burn and ache, I have difficulty walking due to numbness and burning in my feet. I immediately drink zeobind to bind to any toxins.
I think I am a complex case. I was told by Terry who works on my emotions and an associate of my dr that recovering is not a gradual improvement, rather peaks and dives.
I am trying to do better on the diet. I have a hard time eating right ALL the time. I cheat sometimes and I can't help it. It is hard since we all live with people or go out to restaurants and struggle to find food we can eat.
I have been tested for food allergies. I can't eat nightshades like: tomatoes, potatoes, bell pepper, oats, dairy, corn, wheat and dairy.
Why do avoid coffee? I would hate to not have my coffee. He has not told me to avoid it, so I drink 1
cup a day, but not everyday.
Does any of this sound familiar to you? I can't work and haven't worked since 2009. I am single and was denied disability. I am in a pickle. I live with my father and he supports me. He is 90. I have no idea how long it will take to cure my of lyme and can return to work, or if I can return to work? That weighs heavily on my mind.
Oh, yes, I had my fillings taken out two years ago.
How are you doing these days?
Regards,
Susan
diagnosed you and treated you for the mold. Also, that you know about food allergies, such as
the nightshades. I am not familiar with quintessence. Is it some form of antibiotic.? I'm sorry you
were denied disability. It is for sure hard to get with this illness. I can understand your 'angst'
about not working and no doubt depending on your family. Are there any support groups
where you live? I attended one for several years where I live and I learned a lot. This is a most
difficult illness to treat on every level. Emotionally, financially, and finding the right treatments
which work for us. You are in no way alone in what you're experiencing. Unfortunately, I've
heard many stories similar to yours. (Some worse even if you can imagine when there was no
family member available for support.) I have had some of your symptoms but not the walking
and foot pain part. I used to get leg cramps at night but when I take extra magnesium, that
helps. I also struggle with going out to eat and following the healthy style. It is not easy. So
don't fault yourself on that. I now use stevia instead of sugar. Have you tried that? I also don't
eat gluten, wheat, night shades and limit my dairy. As far as coffee, it's the caffeine that's the
main problem. That aggravates your joints and takes nutrients from your bones. Decaf would
help. I switched to green tea and it took a while. Has your doctor ever used herbs? Have you
ever heard of rife treatments? It's good you had your fillings out. Have you been tested for
other heavy metals? ie. lead or cadmium? Hang in there. I have improved over a period of
ten years. I'm retired and had to take early retirement. There's no way I would've gotten better
if I had to work every day. That's been my experience. Keep reaching out, reading and asking
questions. We have to be our own advocates and educated ourselves and not be afraid to
try new things. Have you seen the film "Under Our Skin?".
.
You are not alone. I have been suffering for almost 11 years and only got a lyme diagnosis about 3 years ago. My teeth pain is the worst!!!! I can tolerate my other symptoms pretty well, but when your teeth feel like the nerves of my teeth are on fire, it can be unbearable. It never goes away either. In the morning when I wake up, my teeth hurt, but it is not severe until about 4 hours after I get up. Joyful
Is it lyme? I think so. But my dr told me it could be heavy metals. I had all my amalgams removed 2 years ago and still no improvement. I drink a detox called zeolite twice a day, and I think it helps.
Write me back and tell me your story, And where do you live?
I'd say find a new doctor, but I understand how bloody hard it is to find a Lyme-literate doctor that one can afford!
And yes, all of the symptoms you mention are common to Lyme disease.
For emotional treatment, are you in therapy? There are many different types of therapy that work depending on what someone's problems are and how they're most comfortable working through issues. Any will take longer than six treatments except possibly EMDR, which people use most for trauma (which a terrible illness can be!). CBT can help people re-direct damaging or negative thoughts and create a calmer or more positive outlook. IFS is less common but very effective for really figuring out why you feel how you do about certain things and keeping those reactions from having such power over you. Therapy is awesome, but it takes time, and you have to find the type of therapy and the therapist who is right for you.
In terms of developing new symptoms, yes, Lyme does basically whatever it wants. If you have new or stronger symptoms within a few weeks of starting a new medicine or supplement, then a Herxheimer reaction is happening, which actually means the remedy is working to kill bacteria and the awfulness is a reaction to the toxicity of having a body full of Lyme spirochete corpses. However, if you are taking the same things and developing new symptoms, and also feeling bad right after taking supplements, then it might be worth examining individual ingredients in what you take. For a lot of people, eleuthero and St John's Wort and licorice are helpful herbs with no side effects, but all three raise my blood pressure and give me headaches, so I cannot tolerate them. Magnesium sulfate (not magnesium glycinate) gives people diarrhea. And of course pharmaceuticals are also prone to serious side effects. Keep in mind that there's no one cure for Lyme - there are many effective paths - so don't think that you have to take one particular thing to get well.
All the best to you!