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Doubting Lyme...

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Posted 4/14/2012 1:26 AM (GMT 0)
I was diagnosed by an LLMD about 6 weeks ago, but I'm just not sure how I feel about it.  It was negative according to cdc, and I understand that everyone says the tests are unreliable.  If I thought that taking the abx or whatever treatment, was the answer, I wouldn't question it.  However, it seems like so many people continue to struggle, or have a roller coaster ride of symptoms.  I just can't decide how I feel about all of this. 

Yesterday, I went to an endo for my hashi's.  He asked me about other specialist.  I said that I went to see Dr. X in X Missouri.  He just about flipped out.  He said, let me guess, he told you that you have Lyme.  He said he diagnosis every patient with Lyme, and it's all very questionable.  He also said he's had a few patients that have come in with thyroid and hormones all messed up because of meds this LLMD has put patients on. 

I know this is a place to get support, and please don't think I'm questioning any of you.  I just don't know how I feel about myself, my doctors, medications, symptoms, etc etc etc.

 

Posted 4/14/2012 1:41 AM (GMT 0)
I can completely understand your hesitation. I was exactly the same way. Did you rule out other things first? For me that was the first step. A family doctor tested me for everything he could and all was "normal." Then he started to diagnose subjective and inaccurate things like eating disorders. I knew I had tick bites, I knew I had symptoms appear shortly after. For me, Lyme became a very good possibility. The family doctor refused to run a western blot so I needed to seek another opinion from someone who could do one.

Even though I had a cut and dry "case," I still chose a LLMD who also treats other conditions. I was worried that a LLMD who only treated Lyme would not look into other conditions if they applied to me or came up while in treatment. This was NOT the case in my situation. My LLMD did consider other diagnosis' and still does if something isn't fitting in. For me, a LLMD just meant going to a doctor who was actually going to listen to my concerns and attempt to help me rather than one who saw me as a test result and could care less about my symptoms or my concerns.

You say you have a CDC negative test. Do you have an Igenex positive? Do you know which bands turned positive? I ask because some bands are highly specific to Lyme. Meaning, if you have those bands show up, it's VERY likely that you have Lyme no matter how many turn up.

Also, not all LLMD's do antibiotics. Some do herbs or other alternative treatments. I would be hesitant to go to a doctor who is publicly bashing another one's reputation. To me that screams that the gossiping doctor is unprofessional and perhaps insecure in his own abilities. What makes him think that the meds are causing the thyroid and hormone abnormalities? Lyme and other co-infections can also affect the thyroid and hormones of patients.

Ultimately, you have to do what you feel is right. If you think that a Lyme diagnosis is not accurate for you, don't pursue it. In my case, I knew that I didn't have an eating disorder, so despite what doctors were telling me, I made my own educated opinion to seek out a doctor who specialized in the diagnosis that I felt applied to me.
Posted 4/14/2012 1:59 AM (GMT 0)
You should be questioning this, it's a big deal. There's also a lot of denial associated to something like Lyme. It's such a bizarre set of symptoms, and it crosses systems. There's a lot of neurological issues which can really mess with your head.

I got this same reaction from my osteopath, she said "All those LLMD's think everyone has Lyme". My Igenix test was CDC negative but Igenix positive, and I tested positive to Babesia Duncani. I'm thinking that a positive to a co-infection is a pretty good indicator that the Lyme BB bacteria is there too...

Yet, she still seems to be looking to figure out what's going on with me. Doctors make me crazy.

I did start the antibiotics with the LLMD, and for me, it was a nightmare. I just plain can't handle them and felt that it was the wrong route for me.
I decided to go natural and it's been a total turn around. I have no idea if I'm killing the bacteria or not, but I know I have a major reduction of symptoms and am feeling really good. I have an extremely healthy diet, and am following the Jernigan Perfect 7 Protocol. I am thrilled with how I'm feeling.

I don't doubt the Lyme diagnosis for me. Lyme is more of a clinical diagnosis as the tests are highly unreliable. Knowing my symptoms and how I reacted to antibiotics, Lyme is the only thing that makes sense for me. I know now what makes me worse and what makes me better. It's been a lot of research.

My point is that I that Lyme is controversial and really misunderstood. The treatment can also be controversial. Going natural VS antibiotics VS doing nothing and even denial are all choices. First you have to figure out what you think is going on. The doctors are making their best guesses based on their experience. You know your experiences and you know your body.

Do you mind my asking what kinds of symptoms you have that sent you to the LLMD in the first place?
Posted 4/14/2012 2:34 AM (GMT 0)
Wow, thank you all for being so understanding! I do have hashimoto's and many of the symptoms are the same.

Test results:

IGG Results
34 - IND
41 - ++
58 - +
all others negative

IGM Results
41 - IND
all others negative

Symptoms: (over 10 years) Lack of energy, lethargic at times, never feel rested in the morning, depression, rapid weight gain, mood swings, irritable, anger and rage at times, no libido. (more recently) joint pain, eye and nose twitching, dizzy spells, nausea, vomitting, constipation, carpel tunnel-like symptoms, muscle weakness... These all come and go, not consistent. (also 3 miscarriages, and gall bladder removed)

I don't feel good, but many people talk about being so sick, and hospitalized, or cannot walk, passing out, seizures, etc. I feel like I'm just grumpy and lazy. At times I feel bipolar because of the constant back and forth. My mother has these same symptoms, a lot of mental issues. I don't want to accept it, but I feel like I've just inherited a lot of this.

My husband is definitely doubtful, and feels like the Dr was looking for lyme, and therefore diagnosed me with it. His protocol is antibiotics, and I don't like the idea of long term antibiotics. I've heard he is one of the best, but who knows.

I know diet change is crucial, but mentally, I have not had the willpower to change. I had lost 95 lbs in a year (using hcg) and eating very low carb. Now, in the past 12 months, I've managed to gain 75 lbs back. I eat horribly, and I know I need to change that. How do you change that when you are always depressed, tired, feeling crappy?

Again, thank you for listening. I would love any and all feedback.
Posted 4/14/2012 1:37 PM (GMT 0)
I'm sure someone here can help with understanding the test numbers, I don't totally get them. I am getting a lot about how to help myself.

I think many of us here can relate to the motivations needed in change. You know you need to change, but you don't seem to find it in you to actually do it. I can remember binging on cake and ice cream and knowing that it was bad for me, but doing it anyway.

What I have learned is this:
First educate yourself to know what you need to avoid, and know why. For example, I know that gluten will cause me massive muscle pain. Dairy will trigger my asthma, sugar just makes me sick. I literally made these associations strong in my brain so that these bad foods are an aversion to me. For example, I see Dairy and I see mucous.

Then you need to focus on what is good for you. Focus on healthy foods and learn how to prepare them. Be totally honest with yourself about it too. Don't try to make excuses, if you do eat something bad, own up to it with yourself. Don't make stupid jokes like "Pizza has all the major food groups, it must be good for me". People justify bad food choices all the time, it doesn't help them to get healthy.

The more you focus on healthy foods, you will start to crave them.
The same goes for your state of mind. It's good to acknowledge problems to approach them and solve them. Focus on what is going well, focus on what makes you feel better. Be willing to change that negative mindset. Take baby steps so that it's not overwhelming, but try to keep the movement going forward.

When you live as honestly as you can with yourself, you will find things changing. I no longer eat really bad foods, I have no desire for them. I also had to learn a lot about dealing with social situations where food is involved. I really don't care if people think I'm a diet freak. I had to tell my co-workers yesterday that I wouldn't go to Five Guys. I also try not to impose my diet onto others, I'm perfectly willing to walk my butt over to Whole Foods for lunch or bring my own lunch. When ever you do something for yourself, see it as self love. If you can't love yourself and nurture yourself you can't help anyone.

All of the above is not about Lyme, it's just how I've dealt with your question regarding making changes.

There are a lot of of treatments for Lyme. You need to research what will work best for you. Personally, I would not go onto any bug killing regiment until you know your liver pathways are working properly. Otherwise you flood your body with toxins that have no way of escaping. Address the diet and lifestyle changes and you make your inner terrain less hospitable to bugs and viruses. YES, it's a lot of work, and it's so worth it. Because you're doing it for yourself.
Posted 4/14/2012 1:55 PM (GMT 0)
Just to add to all the wonderful posts above, I just wanted to say I hope you find your answers soon. Given that lyme affects us in so many different ways and mimicks so many other diseases, without a reliable test it's really anyone's call. But please, weigh the facts and your own experience and intuition when deciding what to do, not what some doctor has to say. Every doctor sees all of medicine through their own lens - when I started out on this road a decade or so ago, it was easy for doctors to see all of my symptoms through the hormone/endocrine lens - labeling EVERYTHING I had hashimoto's. Then when my mother took me to psychiatrists (teenagers with lyme rage - no fun for anyone!) it was easy for them to see my symptoms as psychosomatic. Currently, my LLMD is pretty good about being holistic and comprehensive, as she treats me for so much more than just lyme, but still, if I go to her with chest pain, she tells me it's probably lyme, whereas most doctors would say "go get an EKG!" (which I've done, repeatedly, and everything's fine so it IS just the lyme!).

Were you bitten by a tick that you recall, or, did you get a rash? Those can help as sure fire indicators that you have lyme. You may also want to test your cd57 levels as when they're low that's almost always an indicator of lyme.

Have you considered seeing an ND, maybe one who typically does deal with lyme disease? That way you have the best of both worlds - you can get a second opinion, see a doctor who can judge well whether you have lyme, and can treat you for it, but can also treat you from other angles.
Posted 4/15/2012 1:22 PM (GMT 0)
I have had several tick bites over time, I do not remember having a rash. I don't know if the timing of any of the tick bites lined up with feeling different, or the start of some of the symptoms.

How do you know if you have lyme rage, or just rage? Or if you are exhausted, or just not a morning person? I hate this questioning. If I do have Lyme, I want to have my family tested. But do I really want to go down that road? I don't want to "join a bandwagon", I just want to feel better. Ugh.

Thanks everyone!
Posted 4/15/2012 2:06 PM (GMT 0)
Diamblessed,

I also understand the questioning and doubt that you are sifting through. It is hard to get a good definitive diagnosis.

Even though I had positive test I have had my moments of doubt with my treatment. Not helped by my husband not being a "believer" and every doctor I come in contact with questioning my treatment. I end up schooling them by the end of the encounter!

Like others, I chose to educate myself to inform my decision. All the information adds to the confusion at first (especially because you are dealing with it through a Lyme-addled brain). As you continue, the course of action will become apparent; a way forward that makes sense for you.

Small steps! You don't have to do a whole violent makeover that demands a complete shift in your daily practices and personality to start working on your healing.

Just start adding healthy foods to your diet that will be good for you. A bright salad, a fruit smoothie, or an herbal tea. If you feel tense, step outside and take some big, deep restorative breaths. On a beautiful evening, take a little stroll around the neighborhood instead of sitting down some more.

about your diagnosis? It sounds like you've ruled out a lot of other things. Perhaps it is time to rule out Lyme. The best way to do that is to start treatment. You've already had the expense of going to the LLMD, why not go with that and see if you get any results? Unfortunately, feeling both better and worse could be an indication that you have Lyme, so you will need to sort that out. If you find you do have Lyme, then you can re-think how you want to advance with your treatment.

And then later you can consider whether you want to test and treat your family. You see, all of this needs to be broken down into smaller steps. You are taking everything from what is the next thing for you to eat to the philosophy of Lyme treatment to what everyone will think of you and making it one big ball of a snarled mess!! Just pull at one string at a time, bit by bit and the tangles will take care of themselves.

Good luck!
Posted 4/16/2012 2:08 AM (GMT 0)
achievinggrace:  You are right.  I'm looking at all of it, and it's all overwhelming. 

I had started doxy after seeing the LLMD (on it for about 3 weeks), didn't notice anything better or worse, except HORRIBLE sunburns.  However I stopped a couple of days ago after seeing the other Dr.  Just don't know.  I really need to pray for direction! 

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