posted
Hi, I had an appointment with my neurologist today - 7 months ago he said I def. did NOT have neuroborreliosis (for which I am being treated now by an LLMD. I had written a letter to him this summer because I was really scared as I could no longer walk anywhere outside my house - my legs just stopped wanting to carry me + they ached!! ouch!
He had read everything that I recommended about cystic forms, about seronegativity etc. (I couldn't remember anything of what I had written! :-D)
I go on to tell him that I am doing better, about my treatment etc. And he is shocked to say the least - "3 months with flagyl!? AND Oxytetra!? Flagyl is like poison! Why should you take Flagyl!? We never treat Lyme with Flagyl!?" (I tried explaining...)
He went on to try and convince me that I was completely ruining my body with so much abx. That IF I had Lyme it would def be eradicated by now. That it is ONLY based on theory, not facts, to be treated for so long with abx.
Several times he tried to get me to promise to stop using first Metro, and went on to try get me to promise stopping Oxytetra as well. I didn't give him any such promise. I told him that I def would continue with Oxytetra. As for Flagyl I have no idea. I already knew that it is heavy stuff - I could tell it by the die-off reactions I had the three days/week I took it.
The neurologist left me with nothing. Dr AW leaves me with the prospect of getting better, if not completely well. All I want is to get so much better that I can get back to normal life.
So now I am going to see an ID-doc who is going to tell me the same thing as the neuro, and to have a look at my case.
I have gotten all my abx through my GP luckily. There are no LLMDs in my country. I still have enough abx to get me through march - no way they are going to make me quit abx unless they come up with an alternative. I would be happy to quit abx as long as I knew someone would give me an alternative and see to it that I was getting better.
Luckily I am better than 6 months ago - I notice it in the way I cope with this. It would have knocked me off my feet and made me cry bucket-loads back then. Now I am more reciliant (SP?) to that kind of talk.
Just to make it clear: the neuro is a nice person. He talks to me as if I actually am capable of understanding what he says and make up my own mind. We just happen to have two contradicting opinions about what will make me well, and he stands firmly on his own opinions. As do I.
Needed to vent some of this. Now I feel better. Please - could somebody let me know that I might not be ruining my body totally with abx? Most of you will probably not even understand why the neuro made such a fuss about only three months of abx. (What he luckily didn't understand is that it has actually been 6 months of abx now! He probably would have fallen off his chair and rolled on the floor screaming! )
Posts: 155 | From Norway | Registered: Jan 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
In "medical questions" of this forum see "ILADS President's slides" Try to e-mail them to your neuro. It may help him to see that not all lyme bacteria is easily eradicated.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Sorry you got the runaround. No fun, but at least you have a GP who is sincerely trying to help.
It really is frustrating when you know more about your illness than the doc.
Hubby has an upcoming neuro appointment he is not at all looking forward to. He has seen 14 neuros in the last 5 years and only one believed in his Lyme diagnosis.
His PCP thinks he has found a neuro problem with low CSF -- very rare. I'm sure it will be "fun" trying to convince the neuro to even do the correct tests. Of course I think that even if the problem is really what the PCP thinks it is that it is a direct result of damage from Lyme.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
hi my norwegian friend, siggy! been awhile since i've seen you post.
i'm so sorry that norway has nothing to offer you like the states do!
"So now I am going to see an ID-doc who is going to tell me the same thing as the neuro, and to have a look at my case"/
siggy, why are you going to infectious dr.? are they any better than our USA ones are? i don't think so by your answer too.
does eurolyme offer much hope for you from their message board?
herxed terribly after 4-5 days on flagyl; stopped immediately; never been on your other med.
hope others come on today to share their views/experiences.
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posted
Timaca: I had a look at the slides, thanx! I will see the neuro again in 6 months, so will be better prepared. Also seeing the ID-doc, and will be better prepared as well.
Seibert: seen 14 neuros in 5 years!? No fun at all!! It seems like they are trying to brainwash us into believing the same as they are brainwashed to believe. Good luck to you and your hubby!
Hello Bettyg! I am not a good poster here, not on eurolyme either - but I read a lot of what is being posted. Usually I find that to be just about what I can manage now adays. Some day I will come out of the fog!
EuroLyme is a good help! That is how I got hold of dr AW and getting proper treatment. Flagyl is okay now. I only had it three days a week, so the herx was bearable, though terrible. The third day was always worst, and that's when I stopped it. Looking back, I understand that that was a good choice.
Seeing an ID- doc was a nice offer, I thought. Too confused by all info to understand what the point was - to get an ID-doc to tell me I am mistaken and stupid for taking all those abx.
Come to think of it; when I barely could stand on my legs and sent the neurologist a letter in despair begging for help, it took 7 months to get an appointment. Now that I am on abx and doing better, he is REALLY conserned and will have me see an ID-doc ASAP! How stupid is that!
Upon seeing the ID-doc, I thought I'd let him know that this summer, I could barely stand on my legs long enough to take a shower - and then proceed on running up and down the corridor. Seriously - that's what abx has done to me!
Posts: 155 | From Norway | Registered: Jan 2006
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I took my almost 18 yr old daughter to a follow up appt with the head of the neurology dept at a teaching hospital yesterday. We felt just like you did! She has had a non-stop migraine for over a year. Many ER visits.
It had been 3 months since we first saw him after being referred there by the best neuro in the state. Who, by the way Bea, wasted 3 months treating my daughter for possible low CSF, but this new neuro says she didn't have low CSF! He prescribed new meds but they didn't help either. I asked him about possible lyme and CFS and he said they were not his speciality.
Long story short, in the meantime we ended up at an out of state llmd and got a positive lyme test from Igenex. He prescribed neurontin, flexeril, diflucan, and some supplements and B-12. My daughter quickly felt better than she had in 9 months! She was able to emerge from her bed and participate in life some, not normal teenage level, but so thankful for improvement! She just started mepron.
Anyway, yesterday when we relay this to the neuro, bless his very old soul, he says he has only seen one lyme case in his life and no babeosis. It would be rare to have one of these, but next to impossible to have two very rare diseases! (Glad I didn't mention the bartonella! lol) He susgested we go to the head of infectious disease at the same hospital for a second opinion because he knows some doctors are lyme happy and there are labs that will give them the results they want! I offered some of my information, but quickly shut up and thanked him for the referral. The last inf dis dr we tried to see wouldn't see my daughter for chronic fatigue.
I think we will go, but I don't expect much! Someone else on these boards already told me privately that there wasn't a dr at that hospital that believed in lyme disease in Miss. I'm sure she got it here, but has traveled to Virginia, New York and other places where it is more prevelant. Maybe I'll tell the next Dr that she could have gotten bitten in Connecticut! LOL
Take Care, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Siggy, It's good to see you. It's even better to hear you are improving.
I've given up on neurologists and a bunch of other specialists who just want to treat something else.
I went to a hematologist last year for something else and he thought Lyme was treated with steriods. I could barely keep my composure until I got out of his office.
3 doctors in the past few weeks have said, "Lyme and babesia? How did you get 2 such rare diseases, you didn't get then here did you?"
2 days ago the nurse in the cardiologist's office had never heard the word Lyme. I had to spell it for her.
I think if you don't have to see the ID doc, I would skip it and save yourself the aggrevation. That's assuming your LLMD and your GP can continue to take care of you.
Good luck and keep getting better, ok?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
MommaK: To some specialists it is just way too much to even consider the possibility of these strange symptoms to line up with a Lyme-diagnosis, let alone having enough brains to understand (I mean REALLY understand) that abx actually has made a difference!
Sure, one can always discuss the possibility of not having Lyme, but so what?? I mean the treatment we are given for Lyme sure seems to help!
Trueblue; I don't HAVE TO see the ID-doc. I was concidering not seeing him (- who knows, maybe they won't see ME??) but then I have desided that I will. Having no intention of trying to convert these guys into believing in Chronic or Late stage Lyme, I just think it is important to at least put the idea into their heads. I will be seing the neurologist again in 6 months - just to let him know how I am doing, and keep entertaing the idea that I might have Chronic Lyme.
Here in Norway everything is very visible. AFAIK there are only between 5-10 people that are being treated with long term abx for Lyme disease (over 3 months abx). I don't expect to change anything by talking to the ID or the neuro, I just want them to know that someone actually believe in getting long term treatment for Lyme. I want them to KNOW, give them a face - a name and a person- ta-dah!
Sure, they will only dismiss it. But hey, at least, in a few years time, when long time abx has become the norm I will send each of them a postcard: "HA!! Told you so!!" Posts: 155 | From Norway | Registered: Jan 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Go for it, Siggy!!!!!
I didn't realize you were on a campaign. Well, now that I think of it; aren't we all hoping to convert the ones we see?
I wanted to save you the frustration of the visit but it sounds like you've got it under control. If you decide to go, good luck and give them something to think about if they will open their heads for a moment.
I like the "told you so" postcard idea, a lot! I may make my own list of closeminded docs to write later.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Well now, I am a bit surprised! I recieved a call from the above mentioned neurologist: He REALLY wants to follow me up with this whole abx- treatment I am getting. Even though he strongly advises me to quit taking them, he wants to find out more.
He has been in touch with the ID-department, they didn't want to follow me up because I'm recieving treatment that they won't recommend, and they have no idea how to follow that up.
The neurologist is going to discuss my case with a reknown ME-specialist because the specialist has some opinion on chronic lyme disease. Probably not in favour of me though.
Anyway - I am a bit conserned about all of this. My abx won't be stopped, my GP assured me of that, stating that it is my choice what I want to do. The thing is that I want someone to take care of me - I am ill. It is so good if someone at the local hospital does it too.
BUT at the same time - I really don't want to be defending why I am recieving so much abx for so long. I am SO ready to get well - because I have improved so much already, but not enough, I want to spend my time getting well. I don't want to be arguing about what is causing this illness and if it is wise to give me so much abx. Just help me!!! support me!!
A little fuming and steaming here on a friday night. I am in a good mood though.
cheers, Sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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bettyg
Unregistered
posted
siggy, thanks for posting an update. that's promising, doc calling you! later, tme for
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
siggy~ Consider reading the following and printing out the info for the neurologist to review! How wonderful that he seems open to what you are doing and wants to follow you! Timaca
www.ilads.org (see press releases Oct 25--ILADS demands retraction of IDSA Lyme guidelines) This includes a critique of the IDSA guidelines.
www.lymediseaseassociation.org (see Historic Move by CT Attorney General to Investigate IDSA Guidelines Process----about 1/3 of the way down the web page) www.canlyme.com/patsymptoms.html (A good symptom list. This website also has a Physicians section that contains many articles)
www.ilads.org (The ``Treatment Guidelines'' and ``Articles and Presentations'' are worthy of reading)
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
In my opinion it is dangerous to go to docs who don't believe in chronic lyme and might cause trouble for the treating doc. Would be great if they had open minds and might consider actual evidence and improvements in symptoms after treatment. However, some people will use all their energy in defending their current opinions and punishing those who do not agree. Their minds are closed completely.
In the present poisonous atmosphere, I think trying to educate may backfire for the patient and their doc.
I worry about these specialists we are sent to for testing, like cardiologists, neurologists, etc. because they could put damaging and incorrect info in files, based on their lack of knowledge about tickborne diseases. And ID docs are the worst as a group. Strange world that they would be the most ignorant.
Posts: 8430 | From Not available | Registered: Oct 2000
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