Apparently I'm not "sick enough" for any treatment!

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Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/2/2009 4:16 PM (GMT -6)   
I'm about ready to give up on doctors in general!
 
I've already had a horribly depressing appointment with my GP. Not only does he not believe in Lyme, but he doesn't think I'm "sick enough" to get tested for anything else. In two years- he has tested my complete blood count once, and my vitamin levels once. He just prescribes arthritis medication, and forgets about me. I guess he thinks 20 year-olds taking Celebrex is normal?
 
So I started going to a drop-in clinic as well, to see if they would be better. I managed to get a referral to a sports medicine doctor through them (back when I was treating my symptoms individually). The referral was for shin splints, but when I mentioned all my other tendon problems, he tested me for autoimmune diseases as well. He was pretty good- but his specialty was with mechanical problems, so he couldn't help me too much.
 
I went back in to talk to them about my neuro issues- and if anything, they were worse than my GP! I just managed to get out that I had muscle twitches and tingling, and the guy interrupted to tell me it was stress! When I told him I was less stressed than I had been in years, he completely ignored me. Then- he went back over my files, and started critiquing my sports medicine doc's treatment of my shin splints. The drop-in clinic guy said that since my bone scan was normal, there was nothing wrong. It was like he was trying to prove I'd made  [I]that[/I] up as well! He finally agreed to test my thyroid and blood glucose, but he told me he thought it was a waste of time.
 
The only doctor who actually took my seriously was the sports med doctor. But he's not qualified to deal with it, and he can't refer me to anyone. (There's some rule about specialists referring to other specialists). He said I would have to go through my family doctor.
Great.
Even if my GP weren't involved with my Lyme treatment, it would be nice to have him onboard for some of the more worrisome symptoms.
 
It would be nice to have other things ruled out...
 
I was praying for my test results to come back positive, so I could get a doctor to listen to me, but I'm starting to think it won't matter. When they look at me, they "see" a healthy young girl, and so they don't even bother listening to me! And, of course, if they don't listen, then they'll never think anything is wrong, and they'll never agree to treat me- no matter what the Igenex test results say!
 
In a horrible way, I almost wish I were more visibly sick...at least that way I could get help. Now, I just sit here, feeling myself getting worse, and knowing what's wrong with me, and having to just let it happen.
 
I just needed to vent. It's been a trying day. My test results are almost a week late, and my family went on vacation on Wednesday, so I've been having to act all happy, so that they don't feel guilty about leaving me behind.
 

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 7/2/2009 5:17 PM (GMT -6)   
Time to find a new GP, it sounds like to me... When doctors blow their patients concerns off, they need to step back and consider what that feels like to the patients. Drives me nuts when this happens...I've fired many doctors for doing just this to me, too.

Maybe an Internal Medicine specialist would be a better choice for a Primary Care Provider? They tend to be more thorough when it comes to annual exams, etc.

Good luck,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/2/2009 6:04 PM (GMT -6)   
Unfortunately your story is a common one on this board. THAT IS~WHY many of us pay the very big bucks for a Lyme Literate Doctor. We have given up on those that take insurance. Most of us CANNOT afford those big bucks we have to pay but it is the only way we can get treatment.
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/2/2009 9:07 PM (GMT -6)   
Nicky D, you and I are walking down the same path. and i fully understand. did you get the link i posted for you in your other post? it may be of some help to you.

my friends in here wont let me give up, so i cant let you give up either. 1 way or another we will get a flipping Dr. to treat us. i have faith and so sould you.

i also understand your need to vent as i have done my fare shair of it too. sorry guys ;)

just look at some of them you'll see.

praying for ya
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/2/2009 10:45 PM (GMT -6)   
Villi- the blood test I refer to is the Igenex one. I got a lyme-literate naturopath to sign off on it. A naturopath is the best I can do for lyme doctors in my area.

RottenDog- yes, thanks for the link. I got lucky, and the naturopath I am seeing is the one (yes ONE) lyme-literate doctor-type in all of western Canada. It seems most Canadians end up having to go to the states, and pay ridiculous amounts of money. Ahh! Seriously- the Canadian health care system is INCREDIBLY STUPID when it comes to Lyme!

And Razzle- I've already got myself on the waiting list for a new GP. I can't get in to see anyone until mid-September, but at least I found someone taking new patients. I'm still in a bit of shock- this guy has been my GP my whole life, my parents GP, and my grandparents GP. I would have though he'd have known me better than that- or at least had enough respect for me to listen to what I had to say!

I just was really hoping I'd find someone who could listen to me, and then give me a medical opinion/information. My family listens, but they don't know anymore than I do, and telling them everything just freaks them out or annoys them (depending on the day). And the ND is great, but although she knows all about treating Lyme, she can't really help me much with the individual symptoms (ie. eyesight, circulation issues etc.)

Plus- having all these people tell me nothing is wrong makes me start to doubt myself. Lyme has screwed up my thinking/emotions to the point where I sometimes wonder if I'm capable of making a rational decision about my illness. And then when I go to a doctor, and they tell me it's all in my head...

My parents decided to "help" met by phoning my uncle- an internal medicine specialist in New York. He proceeded to lecture us all on the doctors who "over treat" and give "unnecessary" and "overly long" Lyme treatments. He thought we were idiots just for paying for the Igenex test.

Two months ago, I was upset that I wouldn't be able to backpack this summer. A month later, I came home and didn't recognize the house I've lived in for 6 years. Now- I'm terrified I'll have to drop out of school. And I just literally don't know what to do. And I'm scared to talk to my family and friends, because it'll just scare them, and make them uncomfortable.

I would apologize for the second rant, but I think I'll just invite you all to share your rants, and then we'll be even!
And sorry for spelling mistakes- both the brain and the eyes are a little off right now. But I think I got them all....

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/3/2009 7:14 AM (GMT -6)   

Hi Nicky D, welcome to the board!

How long have you had symptoms?  Below is a Lyme symptom list.  You can have any combination of symptoms.  

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
 

It is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  

Where are you located?  You can email me at ko_@bellsouth.net for doctor recommendations.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   He discusses antibiotics and doses starting on page 18.   I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/3/2009 2:42 PM (GMT -6)   
Hi ticker,

I've had Lyme disease for two years- but my symptoms have gotten much worse in the last 6 months or so. As for the symptoms lists...let's just say that when I say my LL ND, she told me "you don't get extra points for more checkmarks!" (she was joking, of course).

So I have a knowledgeable ND, but I'm still looking for an MD willing to work with her, and prescribe the antibiotics she recommends. I have Dr, B's guidelines (my ND is an ILADs member, so her treatment plan is good too), but I haven't gotten that far with a doc yet.

Still waiting on my Igenex results...they were supposed to be here Tuesday! Darn that Canada Post and it's snail mail....

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/3/2009 4:08 PM (GMT -6)   
Nicky, Please don't ever apologize or limit your venting. Thank goodness we can come here and know there are others who understand and care about what we are going through. I'm all pooped out right now otherwise I would join you in ranting.

Hang in there and try not to let your uncle the specialist in NY (don't get me started-lol) or anyone else get to you. I know this is so much easier said than done.

Good luck.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/8/2009 12:52 PM (GMT -6)   
Nicky D,
While you are waiting for a doc to help you, you might want to check into some alternate treatment.  I just started Buhner's protocol.  You can read about his protocol in his book Healing Lyme.  I did Zhang's for 6 months before this but started to backslide the last 2 months I was on it.  I herxed on my 5th day and have had milder herxes about every 28-30 days since.  I have to agree that even with a pos test result most doc's will still tell you that you don't have LD, a false positive!  My son even had a bull's eye rash that the ER doc said "it's not lyme".   KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009

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