posted
Yesterday in a fog of unbelievable pain I went to see my doctor. Coincidentally, the test results from the MDL panel had come in after two weeks. Everything was negative. So they wouldn't have called me about it, I would have just been waiting, I guess, until my next appointment in three weeks!
He doesn't know what's wrong with me. He specializes in difficult diagnoses. He says my symptoms are not consistent with a tick bite disease. My CURRENT sympoms are pain in my upper and lower jaw and teeth, crazy muscle spasms in my face, with nerves twitching, AND my left ear wiggles. I mean wiggles!! It also turns red, and the outer ear hurts like ****. I've also had relentless ringing and other noises in my head, which get worse when the pain gets worse. I get tingling sensations in my fingers and the tips turn purple. My toes fall asleep. I get tired every afternoon. I get sad, angry, emotional at unnecessary times.
I have hypothyroidism with anti-TPO antibodies.
I have a very ugly rash on my legs, almost like spots are bleeding under the skin, which is worse on the left leg, the leg I've had knee problems with in the past.
I could go on.
He wants me to do a 21-day detox program which will cost me about $900. This will clear whatever toxin it is that's causing all my health problems. I can't for the life of me remember having been exposed to any chemicals or anything that could have caused this. I don't eat fish because of a food intolerance.
I just can't do this. Don't my symptoms sound like neuro-lyme to you guys? Can this lab test be wrong, even though it's supposed to be one of the best ones?
Yesterday after leaving his office, I just flat out wanted to DIE. DIE.
I've been to this guy, two GPs, an ENT, an allergist, and a rheumatologist in the past year and I still don't know what's making me so sick.
I know that fasting, and detox and all that can be very beneficial. But I just get the feeling that this type of alternative medicine is like a religion to this doctor, and THAT just doesn't work for me. What do I believe in? I believe in God. I believe in myself. I believe in science and I believe in medicine. And I will NOT GIVE UP.
But, Lord have mercy, I've just about had it.
Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Sounds like lyme but also sounds like some coinfections. Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Do you have a copy of the test results? If not, get one and tell us exactly what kind of tests were done, so we can make useful comments about whether this means anything or not.
Lyme is a clinical diagnosis. There is no perfect test. Many docs will use more than one kind of test and more than one lab, and still have to deal with clinical diagnosis. And these problems exist not just with lyme but with the coinfections as well. There are more kinds of babesia and bartonella than there are tests to look for them.
Your symptoms do sound consistent with lyme/coinfections, so it seems like you should pursue this further before you do any sort of expensive detox treatment. Think you are going to have to go to a different doc, one that knows lyme very well. Don't know the status of your current doc, but a second opinion is in order. It will be a waste of time, though, if you go to any old doc. Got to be a specialist. Have you contacted any FL support groups yet?
Posts: 8430 | From Not available | Registered: Oct 2000
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Nebula, I don't think I can say anything better than tree and lou have.
Below is a link to what I'm fairly sure is the only active support group in florida. I'm sure they can steer you in the right direction to get some help.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Oh, dear. I can sure hear that you're about at the end of your rope. Don't give up quite yet.
Your symptoms -- in the absence of anything else -- and it sounds like you've run the gamut of reg'lar ducks to eliminate the "anything else's" from the picture -- sure sound Lyme-ish to me.
Now, it doesn't sound to me like your present doctor is an LLMD.
If he WAS, he would have a listen to your symptoms and think, "Hmm, sure sounds a lot like a list of Lyme symptoms..."
He would not put a lot of stock in your MDL test results because he would already know that around a quarter of culture proven Lyme patients are seronegative.
He'd probably say something like, "Well, why don't we try you on 200 mg of doxycycline twice a day and see how you feel on that?"
It seems HIGHLY unlikely he'd try to sell you $900 worth of hippie la-la fasting/detox products.
Now, those things are all fine and well and at some point even important to address -- detox CERTAINLY while on antibiotics. So I'm making light of them ONLY to illustrate a point and not to offend anyone. But they are NOT going to kill borrelia burgdorferi.
The only thing they're going to kill is your bank account.
So that feeling you have in your gut as you're leaving this doctor's office that something is VERY WRONG is absolutely RIGHT.
Keep in mind that as far as testing goes, some people test "equivocal" on western blot but convert to positive after being on antibiotics a short time. Those equivocal tests are interpreted as negative, when it ain't necessarily so a'tall. Your present doc is apparently clueless about that -- an LLMD would NOT be.
Find yourself an LLMD, no matter where you have to go to do it.
Don't give up!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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It's so hard to let go of an idea (like that what I have is Lyme) when you're only a normal person BUT you think that you are right. I'm conflicted with the thought that I'm being stubborn about this, and yet knowing that I have to do something or I'm never going to have a normal life again.
The MDL panel tests for Lyme and coinfections by PCR and Elisa. I forgot to get a copy of the results, darn it, but the doctor tossed it at me with a smug superior "see?", as nothing showed up, so I just let it go.
This doctor was recommended to me by a former CFS support leader. I don't blame her. I do wonder though, since everyone one else she's sent to him has liked him, and let me tell you, he was only nice when he turned into the salesman for his supplements and "anti-toxin" philosophy. I've been told by other doctors that I'm "intimidating" because I'm such a skeptic. Maybe that's why he was so defensive with me. Or maybe he's just a jerk.
I can do detox by buying stuff from the health food store. In fact, I may do that, but it sure won't cost me as much money. I've already done some weirdas* stuff with him, like a hair chemical test, and intracellular vitamin level bloodwork. None of which has helped me a great deal. And none of which was particularly abnormal. To his credit, none of it was extremely expensive, either.
Plus, this program he wanted me to use makes you really, really sick. If I'm going to make myself sick without a diagnosis, I might as well do it with antibiotics!!!
I will check with your support group, trueblue, and I do have the names of a couple other doctors.
This doctor had me taking mega mega vitamins. After reading the thread about how bacteria llive off of B vitamins, I stopped everything but the antioxidants. I feel better today than I have for three weeks. Maybe it's just a coincidence, or maybe it's the adrenaline rush from the renewal of my own resolve.
One thing this doctor did, at my insistance, was prescribe a rockin' pain killer. Taking the pain away sure helps the old attitude.
Thanks again, so much.
Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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I just read your post and I sure do appreciate what you said!!!
Yes, when I left his office, I felt as if I had been set up. And he has the skill of making a person feel responsible for her own health problems, like, you have a bad diet, (I don't.)
I didn't do this to myself. I don't smoke or drink much or abuse myself in any way--although, if alcohol helped, it would certainly be in the mix.
As a chronically sick person and a middle-aged woman with life-long issues with authority figures, I have enough trouble with my self-esteem as it is. Curse all ducks.
At least on this visit, my husband was with me, so I don't have to rant to him about it. The poor man, he's a veterinarian, and sometimes has to put up with crazy difficult clients. I try hard not to be one of those people with my own doctors because of that perspective. But, why should I care at this point?
Thanks Michelle.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
If your husband is a vet, you will be interested to know that some vets are better versed in tickborne diseases than are average human docs. They are also in a situation of having TBDs as occupational hazards.
As an example, the medical establishment does not seem to take babesia seriously except in people lacking a spleen. They think it just goes away on its own. Maybe it does for some people, but a lot of the chronic lyme cases turn out to have babesia and even more other types of germs that have to be tested for and treated separately.
Below is an abstract of a medical report by a vet who is also in FL and takes babesia seriously. I have the full text article and a contact address for him, if your husband is interested.
------------------------------------------
Trends Parasitol. 2003 Feb;19(2):51-5.
Babesiosis: persistence in the face of adversity.
Allred DR.
Dept of Pathobiology, College of Veterinary Medicine, University of Florida, Gainesville, FL 32611-0880, USA.
Many babesial parasites establish infections of long duration in immune hosts. Among different species, at least four mechanisms are known that could facilitate evasion of the host immune response, although no one species is (yet) known to use them all. This update strives to illustrate the ramifications of these mechanisms and the interplay between them.
PMID: 12586467 [PubMed - indexed for MEDLINE] ----------------------------------------------
There are also published reports of tooth and jaw pain and weird ear stuff connected to tickborne diseases. Also the blood spots under the skin. Would take me a while to round up all this stuff, but what you really need is a better doctor who already knows it. Handing this info to someone who doesn't want to or can't diagnose Lyme is usually a waste of time.
But just for your own peace of mind, I am pasting one abstract below about ears and lyme.
You understand that I am not diagnosing you with tickborne diseases, just saying that your symptom picture suggests strongly that you need to keep looking at TBD a while longer, with an expert.
Don't write off vitamin testing or the hair testing business. There is evidence that B vitamins especially are depleted in lymies and that some patients have heavy metals problems. Also, there is a difference of opinion on taking vitamin supplements. Most lyme docs strongly advise taking them, because your body needs them and the consequences of low levels can produce symptoms and can be adverse too. You especially need to take magnesium supplements.
And finally before I forget, here is one ear abstract:
------------------------------------------------
Ned Tijdschr Geneeskd. 1997 Mar 8;141(10):482-4.
[Borrelia lymphocytoma ('winter ears') in children]
[Article in Dutch]
Obihara CC, de Geer DB, van Diemen-Steenvoorde JA, de Jongh BM.
Afd. Kindergeneeskunde, St. Antonius Ziekenhuis, Nieuwegein.
Two cases of Borrelia lymphocytoma are reported. The skin lesions were located on the ear margin or lobe. They were swollen, red and painful on touching. Serum titres of antibodies to Borrelia burgdorferi were elevated in both cases. Spirochaetal cultures from skin biopsies taken from the lesions were unsuccessful. Both patients responded very well to antibiotic treatment.
Publication Types:
* Case Reports
PMID: 9173289 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
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It's interesting that a vet at U of F (which is where the state veterinary school is located) has studied babesia! Lyme isn't supposed to be a problem in Florida, although my husband has diagnosed a few cases. And he has been known to treat based on symptoms, if the clients can't spend money on the tests or if the tests come back negative. He's perplexed as to why MDs are so stubborn. He does think that dogs seem to be cured with one or two rounds of doxy. But dogs don't live as long as people and who knows how it can effect their health, especially when they can't talk about it.
And I just don't believe there's no Lyme in Florida. We have so many ticks. We've lived here for 16 years and they've been a constant problem, more so than fleas, which are easier to keep under control.
Our sweet Golden Retriever fell over dead in October--he had no apparent heart problems, which one could assume could be the cause of sudden death. I have spent many evenings pulling ticks DOZENS of them off of him, because brown dog ticks will hatch in the house. I had "babies", TINY adult ticks, swarming over me in bed one night. We've found nymphs (which suck blood but don't reproduce, they molt and then become adults) that have crawled all the way to the ceiling. I about lost my mind keeping up with it the past two years.
This was a heartbreaking loss. I refuse to get another dog for a long time because ticks can wait so long to reproduce. Our cats don't get them nearly so often, perhaps the current flea/tick products we use work better on them, although in the past, I've had to check them constantly, too.
This thing with my ears is no fun. I get a really sore and stiff neck, too, which sometimes is more painful than the face and ear pain.
The rash on my legs never actually bleeds, nor does it hurt or itch. But when it's bad my ankles swell up and my socks leave imprints for hours after I take them off.
I've shown this rash to many doctors. Duh. None of them know what it is, nor have they ever seen anything like it. Nothing helps it topically, although it got much better last summer, then worse again in fall. I'm not sure why.
I would be intersted in whatever you can dig up--especially about ears since mine are being so weird. No hurry, and I do thank you. I'll tell my husband about the vet in Gainesville. I don't recognize his name, but maybe he would.
Thanks, Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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Now, what you really need is not for me to round up information for you, guessing what might help, but to show you how to do it yourself. You know what they say: Give a man a fish and he is fed for a day. Teach him to fish and he can feed himself indefinitely.
This is especially true in lyme and other tickborne diseases, because the medical establishment is making a hash of these diseases, and the ins co will also be a problem frequently. So, you need to prepare yourself for being your own advocate and researcher. No one is going to do it for you, and you don't want to be a casualty of the current ignorance. Learning to do this is the most valuable asset you can have. I once heard a good maxim that really applies 100% to lymies: We will get better medicine when we get up off our knees. Start thinking of yourself as a proactive medical customer, not a passive patient.
With that intro, here are some good places to get help.
1. Start with the newby links at the top of this page. Lots there, pick and choose the most relevant, go back when necessary and find other pieces.
2. Go to the National Library of Medicine website and search for whatever symptom, etc you want. For instance, when I found the ear abstract for you, I searched with the term Lyme +ear. See, pretty easy. Sometimes the terms that are used to classify are not as easy, but you will get the hang of it. Click on this link to get pubmed (the National Library of Medicine):
5. At the top of this page is a string of words that you can click on. Pick "search" and plug whatever terms you want into the search box, then read a whole bunch of previous threads on those subjects in the lymenet archives. There is a lot of repetition here, especially with newbies who have a lot of the same questions. So, there is probably something already in the system on whatever interests you. A good resource.
Good luck. If you have trouble with technical language in the medical articles in journals, I'm sure your husband can help you translate them. Also, there is a medical dictionary on the NLM website at http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
You could startle him by reeling off some technical terms and knowing what they mean!
[ 29. January 2006, 01:15 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Nebula,you have it made in the shade!!!
Get your husband to give you benzathine penn b shots.
It s ok to have procane penn b mixed with it.
Very low cost,and effective against lyme
If you herx. and then get better you know it is lyme, if not then look for cooinfections.
No I am not a doc. just a 22 veteran of lyme.
Allthough I think I may be over the lyme now,due to 14 months benzathine penn. shots.
My battle now is,joint damage, my intestons are wore thin from the long term oral abx I took,I have terrible chem sinsitivities, interstitial cystitus ,and thin bone walls.
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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posted
Hi Nebula. It is your right to obtain a copy of your tests from MDL. I would get a copy ASAP. Then post the results here so we can see the bands. Surely SOME bands showed up!
The next thing I would do is get a dr to test you through Igenex. www.igenex.com
The fact that you have found tons of ticks in your bed and house speaks volumes. That and the loss of your beloved pet says that SOMETHING is going on here.
You also need a good test for bartonella and babesia. Please do the above stated suggestions before spending $900 on detoxing. Sounds like a racket to me.
Hope you will continue to do your research. The answer is out there and you will find it!!
Welcome!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I'm so sorry! In my usual dazed state I had thought you said you would "round up the information for me." Then after I had already sent my post I re-read yours.
Believe me, I am a research junkie. I haven't been to PubMed lately, but I will revisit. Part of my frustration with life is our absurdly slow dial-up internet connection which is capricious and unreliable--it drops off, it stalls out--and loading those PubMed searches and pages gives it fits sometimes.
Since my symptoms have rotated and changed over the past few years, I've been perplexed about what was causing them. In 1999 when I first started having knee pain I wondered, after doing some research, if it couldn't be Lyme, when linked to my other symptoms of fatigue, night sweats, weight changes, hair loss, etc. AND tick exposure. Of course, no one took my idea seriously. I had x-rays, an MRI, physical therapy, and when the problem went away months later on its own only to reappear in 2002, I finally got an x-ray which showed osteoporotic changes. This didn't explain the swelling and stiffness in my whole leg. Again, my knee just improved on its own and now doesn't bother me hardly at all.
But I digress. I have read a lot of what you have suggested. Sometimes it all takes a lot of energy I don't have.
I do consider myself a medical consumer. I am only passive to the extent that I have never actually attacted one of the idiot ducks I have had the misfortune to have had to consult. I just leave the office, pay my bill, and find another doctor.
Thanks for the links, and I apologize for making a newbie mistake, instead of looking for the information on my own, which I will continue to do.
Thanks again, Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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I lost a lot of weight after a serious and unexplained illness in 1990. I was exhausted and had a cough for 4 months, nothing wrong with my breathing, many blood tests, antiobiotics, SIGH, never knew what it was.
Then, with continuing symptoms throughout the years, I gained weight about the same time as I went through menopause, and my thyroid started to underfunction.
Since then I'm still over my best weight, but I'll lose and gain five or ten pounds without any explanation. I don't diet because I have no willpower. I had to stop exercising a couple years ago when I could hardly drag myself through the door afterwards and would fall asleep without eating. During that time, the same would happen. I'd suddenly find myself ten pounds heavier or have weight just fall off for no reason.
Long answer. I guess this could be from the thyroid problem, which I now take replacement hormone for. But after several years of that, shouldn't my metabolism have sort of evened out? I don't know.
Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
Sorry if it sounded like I was giving you the brushoff. It was meant to empower you. So many people are too much in awe of white coats to think for themselves. Doesn't sound like you are one of those, based on your last response to me. Glad to hear you are an info junkie. It helps a lot. But, as you have discovered, it can be tiring. Not fair that you have to take this on while being sick.
Know what you mean about the dial up speed. Actually, my brain is working pretty slowly, so maybe slow dial up suits me better!
Best of luck.
I found the books by Karen Forschner and Denise Lang to be most helpful in the early stages of being diagnosed and treated. They are both listed in the books link in the menu box.
Think I will bow out at this point, having spent a fair amount of time and not apparently achieving what I was trying to do.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I've been sitting here too long. Staring at the computer screen and keeping up at typing coherently has made my eyes ache, my neck sore and my ears hot and sore. And my fingers cold.
Thanks everyone.
Lou--really, no offense meant.
Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
Has anyone tried the homeopathic Ledum [pronounced Leedum] Vets use it for Lyme disease.
Do a search for Ledum AND lyme. There is a post out there from a vet that has used Ledum to heal dogs, cats and horses of Lyme using Ledum.
Posts: 22 | From Florida | Registered: Apr 2005
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