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I just got really scared.

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Posted 4/6/2010 4:16 AM (GMT 0)
I just had a revelation, once again, that I dont have real direction with my health. I am treating the symptoms I have and that is o.k. bcause I dint think abx will help at this point. I just wish I had a doctor directing me.--It just feels very scary. I see a cardiologist and then an endocrinologist. I still need to see a neurologist,too.-- My GP wanted to send me to a Rheumatologist...FOR what???? To test me for a bunch of disease I have already been tested for and came back negative???------ So, I have LD and I am really my own doctor.----I am scared. Again.
Posted 4/6/2010 4:45 AM (GMT 0)
The rheumatologist is probably to check you for auto immune diseases. I am seeing one on Thursday.

This is just a thought, but have you ever considered trying a natural protocol for Lyme? Are you taking supplements to boost your immune system?
Posted 4/6/2010 4:54 AM (GMT 0)
Are you seeeing the Rheumatologist because you believe that the LD maybe causing other auto immune disorders?? --So if you do have an auto immune disorder, will that be treated separaetly??? Will you go into the appointment telling them you have LD???---
Posted 4/6/2010 4:58 AM (GMT 0)
I dont have a positive test result, although I have a classic story. I am not sure if the rheumatologist would take me serious because I was clinically diagnosed.
Posted 4/6/2010 5:04 AM (GMT 0)
CAJUN GIRL:: so i probably DO need to see a Rheumatologist.-- How do I approach it??? Just gp in there, say I have Chronic LD and I need to see if it is causing anymore auto immune reactions??
Posted 4/6/2010 5:06 AM (GMT 0)
Yes, that's why I'm going in. I have other problems going on too like weakness in my legs and pain in my muscles and joints. Sometimes it's hard for me to bend my fingers. My primary thinks that I have an auto immune problem so she referred me to a rheumatologist. I already have Hashimoto's, so it's possible that my body may be attacking other parts as well.

Yes, if I do have an auto immune disease, it will be treated seperately. I have Hashimoto's, which means that my body attacked my thyroid and caused it not to function properly, so I take medicine so it functions normally. Say I have rheumatoid arthritis....I would have to take medication to stop the progression of the disease and something for pain too. So yes, these disease need to be treated seperately.

Yes, I will go in and tell him I was diagnosed with Lyme Disease. What he believes is his own choice. If I feel he is too negative about
everything, then I will just find another doctor. He needs to know that I
was diagnosed with Lyme since it can cause these auto immune disease.

I am not looking to be healed of Lyme right now. I just want to be able to function so that I can be a wife and mother again. I will deal with the
Lyme on my own with a natural protocol since I cannot take antibiotics.
I just want him to get me back on my feet.
Posted 4/6/2010 12:55 PM (GMT 0)
CG, I am working on a plan similar to yours -- getting some lyme caused issues treated so I'll at least feel better in the meantime, and at least be able to work up an attitude that can help me fight. So w/o an LLMD, so you believe an rheum is the best option when one does not have an LLMD? I was thinking of just an endo or an internist, to treat my thryroid and adrenals, hoping I might then feel well enough to try to tackle lyme.

For example, would a Rheum attempt to treat Hashimotos?

Stutter, I would sure like to get my hands on some abx again. Tho I suffered mentally/emotionally horribly on heavy doses of Amox, I ended up w/ some relief in the end. It just didn't last. Abx may not be all that bad, depending on the person. So far, knock on wood, my body has always responded favorably to abx. I just didn't get to take them long enough. I'd really like to find a Dr willing to 'pulse' them. If I felt better after 2 months, then I'd like to stop for a month, then hit it again for 2 months, etc.  I really have this feeling that I could kick lyme this way. Probably not so for the Babs.  But maybe, just maybe, if strong enough, I could battle the Babs on my own.

Posted 4/7/2010 1:13 AM (GMT 0)
Hi Lyme,

An internist or an endo is best to treat Hashimoto's. A rheumatologist is basically for auto immune diseases, etc. That's why I'm going to see this doctor.....to see if I have anything auto immune going on like my primary thinks.
Posted 4/7/2010 1:57 AM (GMT 0)
I have to admit, after my first appointment with my LLMD, I kind of stuck my head in the sand and tried to avoid all other doctors appointments. I was sick of being scared about what else it might be- or not being sure which doctor to listen to. But I've started to come around again. It's probably a good idea not to assume that everything that happens is Lyme, and getting a second opinion can be good. It can be scary- I remember being terrified when I was getting tested for autoimmune diseases- but it's better to be informed. I try to tell myself to have the appointment and get the test results back BEFORE I start worrying, but it doesn't always work.

Hopefully other less doctor-shy members can give you more advice about the actual appointments.
Posted 4/8/2010 1:28 AM (GMT 0)
Unfortunately,you have to be your own dr. You can do it. you are worth it. It's a lot of work but as you start to feel better you will become more empowered. I have had an incredible battle and have ups and downs but I am so sick of being sick that I am determined. I have made it a mission and research constantly. Do I want to? NO but apparently I have no choice so that's it. I am again at a standstill. I think I need a new dr. Although I like my infectious disease dr. he apparently doesn't know lyme. he will continue to treat me but I want to get better yesterday not three years from now. I spend a minimum of two hours a day on lyme disease but thankfully I have or I would be a lot worse off right now. Be vigillant. I am fighting the insurance company now for refusing IV. It's not gonna be easy, but it won't be for them either. Best of luck.
Posted 4/8/2010 1:31 AM (GMT 0)
BTW, don't be surprised when the neuro or whoever else you see doesn't know the answers to lyme or how to treat. That is why you have to educate yourself as best you can. i jsut went to neuro who flat out told me "he doesn't know" most of my lyme questions. I told him teh statistics of lyme showing up in spinala fluid and he then agreed to write letter stating a diagnosis of central nervous system lyme even though he initially wanted to do spinal tap to rule out MS>
Posted 4/11/2010 3:39 AM (GMT 0)
I did not test positive according to IGENEX test yet I had all the symptoms for many years. My doc did the C4 a test for more evidence of Lyme . My son was tested too. His level was higher, his is only 11.  He was positive on IGENEX.

Anyway, C4a levels are high in lyme patients . we are followed by blood tests. He has been on Cef  and Biaxin since Sept.

I was on Biaxin 2 years for mycoplasma which is a common co infection . I was getting worse even on it.

After tests confirmed lyme, I started Biaxin and Cipro in Sept then pulse Flagyl one week and the other 2 for three weeks out of a month. It has been a slow but sure recovery. My doc plans to keep me on ABX for at least one year. I take many vitamins, supplements, hormones, anti virals  and probiotics.  Antiyeast when needed. 

Fibro and fatigue centers have LLD.  I have no self gain in them.  Just like their approach. They test for every thing . Treat and continue to monitor.  I think I may have just continued and died if not for them.

Still working on killing the Lyme bac and dealing with all the problems it has caused for 15 or more years.

Get help.

Posted 4/11/2010 4:31 AM (GMT 0)
WEll, Stutterbug -- to address your very first post here, I have to say that I am not exactly scared like you are, but very very tired, overwhelmed and frustrated. Because while I continue waiting to get to the LLMD (on waiting list for 1 yr now), I NEED these issues dealt with -- and will have to go to regular Drs to deal w/ each one:

Endo or PCP who will give my thy meds (I know he will) But will he know about adrenal fatigue or how to treat it? I do not know.

Broke down and went to Chiro yesterday, for back and neck pain (and spasms, burning vs icey sensations in muscle spasms) -- mainly to get an x-ray and see what can or cannot be dealt with in his opinion.

Stubborn depression problems.

And CG, if rheumatologist is best for autoimmune, I'll add this to the list.

I am supposed to be working, not running around to Drs!!

I am sick of this crap!
Posted 4/11/2010 11:25 PM (GMT 0)
Stutterbug- like cajungrl said you can try some natural things at home if you are taking a break from abx- i think that's great advice. I went to a rheumatologist a few months back and felt the same way you did but i just told him i was being tested for lyme at that point- if he doesn't believe in it that's his problem and you can always find another doctor if you don't like his attitude about it ( i didn't like mine)

Anyway, the scared thing is something i'm quite familiar with and that is why i send you a big HUG. It's the best i can do on the net! lol.
Posted 4/12/2010 4:25 AM (GMT 0)
Hi susan,

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Post Edited By Moderator (CajunGrl) : 4/11/2010 11:56:54 PM (GMT-6)

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