posted
I am a mess, guys. So stinking confused and frustrated.
Long story short is that I have been to lots of doctors, one of them being an infectious disease specialist. When I first saw her, I had already tested negative for Lyme with my rheumatologist. I told her that and she (nor I) gave it a second thought. It was just one of a long list of illnesses she asked me about.
I saw this doctor twice. Once in late 2009 and another time in 2010. I was as much a mystery to her as I have been to all my other doctors.
Since being made much more aware of Lyme Disease, I realize it is very possibly my diagnosis. So my c-6 peptide test was negative at .41? Now I know that's not very reliable nor definitive.
I have an appointment with Dr. C in Missouri but not until late October. I am starting to exhibit neurological symptoms and I'm quite scared. I hate to wait, but of course I have to.
I figured maybe I should go ahead and have a Western Blot done before I see the LLMD. I could have the results in hand at that time. Maybe expedite the diagnosis just a tad.
I called my ID doctor and asked for an appointment. They asked me what I needed to be seen for and I told her I just wanted to be tested for LD. The receptionist got really nervous sounding and promptly told me they would have to get back to me.
When they finally called back (several hours later), I was told that my doctor couldn't see me anymore. When asked why, she told me that they aren't accepting any new Lyme patients at this time!! I explained that I merely want to be tested....I hadn't told her my symptoms or anything! The answer was still NO.
I don't really get it. It seems unfair. I was an established patient. How can she just refuse to TEST me?!?! I wasn't expecting her to treat me or help me get better, for gosh sakes!!!!!
Anyway. I don't know what to do now. All the reading I'm doing, is confusing me and making my head tired. (I truly have major brain fog....and now vertigo too---makes reading a challenge!!!)
Guess I just wanted to see if any of you have any advice to help me get through the next 3 months. I'm truly suffering. As is my family without their mom/wife.
Thanks! Beth
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Wow that's horrible! You have to find another Doctor. One who is scared to test you isn't going to want to treat you if it turned out to be positive. You're better off with someone else. Ask over the seeking Doctor's board... I'm sure there are other LLMD or LLNP in Tx or close. Good luck!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
How frustrating! It is hard to get better from this disease with so many obstacles.
My family doctor fired the whole family with a certified letter saying we no longer had two way communications when I inquired about IgeneX testing.
I sent back a certified letter with a few choice words.
I cannot prove that she had intent to harm and only one of us is CDC positive for Lyme- so no suing her for 33 years of combined inadequate treatment.
I think she knew at that point she was going to be found negligent. My youngest was screaming Lyme disease from every pore of his body, my oldest had swollen glands for 9 years that she said were just normal. I had a dignosis of lupus that was never confirmed at the university hospital yet she was treating me for it for 11 years.
So in the middle of being sick, 3 of 4 in the family, we had to find a new family doctor. For my youngest we had to find a pediatrician willing to oversee possible IV treatment. That was hard.
Will your family doctor test? How did you choose Dr. C.?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I got Dr. C's name from a couple of members here. We have none here in Texas for now.
I've been told I might have lupus, too! For a while I was on methotrexate for seronegative RA. It's amazing that these doctors can diagnose other seronegative illnesses with no proof we have it, but Lyme is so different. Ugh.
I don't know that my family doctor will test me. After all, he was the one who told me I needed to "be happier" to feel better because I was supposedly healthy.
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I was told I had lupus- wrong! I had a positive ANA from 30 years of chronic infections which messed up my immune system all due to undiagnosed Lyme disease and coinfections.
Have you had the ANA lab test?
Your family doc seems like he should be fired. what a comment!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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I feel for you guys having kids with Lyme. That must be so hard!
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
It is a life I never imagined. I knew nothing about Lyme disease until a year ago. Within 1 month 3 of us were diagnosed and then 2 months later my sister followed by her son. We are not alone though. So many sad family stories with Lyme in the US.
Have you thought of composing a letter to your doctor? I included a Lyme diseasae brochure from ILADS.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Let's face it, some doctors suck. Push through it and keep pursuing. You can always do some Buhner herbs (book, Healing Lyme). I'm no doctor, but maybe the herbs can keep your lyme from progressing at the current rate (slow it down a little). Don't waste your time on the western blot. Go for an ILADS doctor. I'm not sure, but I think the one in MO is one (double check).
-------------------- --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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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Don't feel bad. You are not to blame and you are not alone.
Lyme is a political hot potato especially for ID docs. The medical society that most ID doctors belong to (IDSA) have taken it upon themselves to try to keep chronic lyme patients from getting treatment.
Any ID doctor who would dare treat chronic lyme disease would be ostracized. The IDSA doesn't believe Chronic Lyme Disease exists. Some doctors have lost their license for treating chronic lyme disease.
If you can't get doxy (200 mg 2X per day) to hold you over, ask the group about some of the herbal protocols that ppl use who don't have an LLMD but need treatment.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I understand some of what you are going through. It took 3 years for us to realize my son had lyme. Several doctors that said he had food allergies, heavy metal toxicity, low thyroid, low testosterone (he is 22!), so when I got here I was out of answers.
The texas medical board has driven all the LLMDs out of Texas. I call an ID doc just north of Houston, said we thought my son had lyme, they set up the appt. and then called back and asked how long had my son had lyme. I said maybe three years and the nurse said we do not see that kind of patient.
That was the third ID doc I had called for an appt.
Lymetoo pointed me to a doc in Louisiana (LA), I will PM you. He is treating me and my son. He is very busy and his back up when he gets overloaded is Dr. C in MO. The doc in LA is on a month long mission trip so I do not know what his backlog is.
Also my DO in Houston would probably see you and at least consider a round of doxy (I would think) until you saw Dr C but she may not have extensive LLMD credentials, however I know she has some lyme patients. She is a great doc in Houston but does not take insurance.
Note the new law goes into effect on 1 Sep that doctors cannot be reviewed by the Texas Med Board for alternative treatments for Lyme. So eventually we should get some docs back.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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posted
Thank you guys! Great answers so far----keep them coming!
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Your dr experiences are appalling and all too typical. It would be great if you could sue that dr for negligence/malpractice!! But it's probably not practical, and you need your time and energy to spend towards getting well.
Lymenet will help you immeasurably, as I think you can see already. You will get the help you need. But if you can start sooner with doxy, that would be good. ANd do try to get in on a cancellation list. Cancellations do come up.
Posts: 3792 | From around | Registered: Mar 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Sometimes things have a way of working out for the better. God may have a better doc for you to see. Sometimes if I am in my comfort zone or feel like I don't have choices, I stay where I shouldn't. Not saying this necessarily you, but just a different way of looking at it.
I got in with my llmd's PA first. It at least got me in their system and started the process.
Hang in there, we are with you....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm sorry you had to go through that. It just isn't right! BTW..I had a positive ANA, my primary said I had lupus... but after my LLMD treated me with abx, after a year and ever since my ANAs have been neg.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Beth, Having lyme in texas isn't easy. I've had over 10 docs either look at me like I was crazy or flat out tell me I was. Specialist after specialist. My ID doc the insurance made me see at first said I had lyme and we would discuss treatment next visit. Next visit came and he said I definately did NOT have lyme, probably never did..but, if I did, the 3 months of IV treatment I'd had was more than enough to treat it. Even though he'd previously told me he'd taken samples from a friends knee after months of IV Rocephin only to find more spirokeats.. SO, he felt pressure from somewhere to blow me off. Which he did. He sent me to a Rheum. stating "You don't have lyme but if you still have aches and pains you can see the rheum." THe Rhuem. had me see the neuro. which sent me to the pain clinic after I quit his MS meds.. No one wants to deal with our disease here. If anyone can find someone who will, let me know and I'll drive to see them..
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You might look into some herbal protocols for while you wait. There are many discussions on herbal protocols on the board. I know it seems like a long wait, and it is, but Lyme treatment is long term and it's not that far off.
You can work on detoxification and herbal protocols while you wait.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
There are LLMD's in Arizona and California that look good. Dr. C in MO was my first LLMD, but I found one I liked closer to home in Illinois. Check out Seeking a Doctor on this forum.
You need to be on doxycycline 200mg BID asap.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Definitely get on the MO dr's cancellation list. You could be called within weeks.
Infectious Disease doctors never surprise me with anything they do. They do DISGUST me, however.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I was diagnosed with possible MS in my 20's, lupus in my 40's. I had a positive ANA and an elevated RA #. For some reason, I just couldn't believe it. You shouldn't either.
Stay on these boards and teach yourself how to get better and how to manage this disease process.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've gotten fired from a doctor and also a dentist. It sux. But may be for the best...if I'd stayed with the doctor who fired me, I'd probably be dead by now (he was insisting I take a very immune-suppressing medication even though there was lots of evidence that every immune suppressing medication I'd been on before that did nothing to help and sometimes made me a whole lot sicker). Instead, I wound up seeing my current doctor who happened to be LL but I didn't know that at the time, and he's been fabulous to work with by comparison to the other ducks I've seen.
Also, yes, Lyme is known to trigger positive results on a variety of autoimmune tests, but often the test results return to normal with Lyme treatment.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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I'll call and get on Dr. C.'s cancellation list Monday. Definitely.
If I started taking doxycycline now, what would it do to test results? I assume Dr. C will do a Western Blot on me to screen me, right?
I'll start reading about herbal protocols right now. This forum is so helpful!
Thanks again!
-------------------- Beth Undiagnosed since 7/2009
Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates Posts: 31 | From North Texas | Registered: Jul 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If she tested you and your were positive, it would be unethical to not treat you, that is likely why the ID doctor wouldn't even test you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Beth .. the doxy can make the test MORE likely to show positive if you take it now. But be sure to GO OFF the doxy about 2 wks before your appointment with Dr C.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I was just dropped by an LLMD too. It is not fun.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I must add that I was also told I had Lupus by two different ID docs. A friend of mine from my town was also told by one of these docs that she had lupus. Come to find out she had contracted Dengue Fever from a mission trip to Haiti. She never had Lupus at all!! I also had a third ID doc want to do a spinal tap for Lyme and felt that it would definitely show if I had it, without a doubt. I am glad I didn't let her do it, with only 20% of cases showing up from that test. She said it was the ONLY way to be sure I had it or not. Course she did her own taps so it was in her own best interest to say that.
It would seem that more states should go the way of CT and RI...create their own more stringent protections for doctors who treat Lyme. If docs aren't afraid to treat, we all win.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i got dropped by an infectious disease doc.
she said there was no more sense in me coming in. and she said rather snottily "well i always thought there was nothing wrong with you."
i was shaking with anger when i left her office.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Yeah, my last visit to my Chiropractor I had asked him if he wanted my latest theory on what I think my health issues were. When I told him I thought it was Lyme disease, he got very quiet. He eventually told me he would look into it further for me and specifically said for me NOT to look into it further myself anymore. Well, I'm a pretty stubborn person and, just because he tells me not to, I'm most likely going to do it just in spite of that. heh
Since that visit, I got my WB test results back and am positive on 5 bands and indeterminate on 2 bands. I want to go back and say "In your face!", but I admit that's a bit childish :-)
I really need to get back in for an adjustment and a massage, but now I'm kind of dreading it. I hate confrontation. I've been going there for over 10 years, so I'll probably just bite the bullet here eventually. Still dreading it, though.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
ID doctors suck, plain and simple.
Really, just my opinion. Posts: 1374 | From Crazy Town | Registered: Dec 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I was fired by my Primary doctor for refusing to take an expensive test for a rare type of cancer that I'd already had done SEVEN times by other doctors, and read as definitely negative by one of the top experts in that type of cancer.
I read recently that 34% of Americans have been fired by a doctor now!
A friend of mine who does not have Lyme had major GYN surgery on a Friday, and her surgeon left town for the weekend without getting another doc to cover for her, and without leaving any orders for pain medication for my friend, and also left no orders for her regular meds that she takes daily. She went through hell as a result of almost 3 days with no meds. When she complained about it at her follow up appt. after the doc got back in town, she was fired. I would have sued in a case this severe, but she doesn't believe in suing people. So, you are not alone, and Lyme patients are not alone in this either.
I know Texas is an esp. hard place to live. I had a friend there whose LLARNP moved to California because of what Texas is doing to Lyme docs, so she got tx by phone, but had to fly out to California twice yearly too, which is too hard on us when we are so sick.
If you must wait to see an LLMD, you may be interested to know that a recent NIH study pitted Samento with Banderol against Doxy, head to head, and it creamed the Doxy! The Doxy only killed the chetes, but the Samento/Banderol combo killed all forms of the bugs, including L-forms, and cysts. I can testify to the intensity of the herxes Samento can cause, since it has been my only tx!
I hope you find a solution soon, klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I've been fired, and fired docs too. You have to fire the ones who aren't helping you. They often have the attitude that you are there for them, when in fact they are working for you (supposedly) If someone doesn't do their job, they should be fired, not the client..so messed up!
I hope the new TX legislation will help, because the way it is now it's impossible to get any doc to take us seriously.
That is interesting news about the Samento/Banderol study klutzo. Never heard that one.
Beth, take care of yourself and I hope you get in soon. I have to find another LLMD myself and it is overwhelming..
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by CountryMouse: [QB] Blue you were dropped by an LLMD??????
Yup I got dropped by the LLMD I was seeing in NY.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
If a doc fires you because they are afraid of treating Lyme, or doesn't want to hear about our symptoms, or any other ridiculous reason, why not report them to the medical board? I would imagine that if a doc fires someone because of Lyme once, they do it all the time. If the board sees the same type of complaints over and over for the same doc, I would hope that they would do something about it. I may be naive however!
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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