posted
My husband has been suffering from the neuro effects of Lyme disease. He had a very strong positive Western Blot on both the IGg and the IGm. We sent the results to an LLMD and he told us that he definitely had had a recent infection. Brian (my husband) was able to be treated with only one month of rocephin because of Oregon laws and our insurance will approve nothing more. He finished the rocephin in March. He also changed his diet totally to mostly raw fruits and vegetable with some animal proteins. He herxed horribly while on the antibiotic. All of his symptoms seemed to go away; trouble breathing, chronic sinus infections, asthma symptoms, extreme fatigue and malaise, headaches, insomnia and countless others. He was amazed at how much better he felt. Unfortunately the neuro stuff; body wide muscle twitches, weakness, hip pain and some motor trouble did not go away. It has leveled off and possibly gotten a little worse. He also has some muscle atrophy in his left had. We finally raised enough money to put him back on the antibiotics and actually go see the LLMD. I called the LLMD and told him we were ready to go. He told me to remind him of my husbands problems. I told him everything vanished except for the neuro trouble and muscle twitches. He said and I quote "muscle twitches are rarely seen in Lyme cases. Your husband probably has ALS. Muscle twitches are from ALS." I told him I had read several papers as well as read many stories of twitches being common in Lyme patients. He said not really. He then had to go. I was floored by his statement. I figured a LLMD would be well versed in all the symptoms of Lyme. I was very, very discouraged and upset by this guy. Any encouragement? Keep in mind that this Dr. hasn't even seen my husband. If any one knows of a Dr. that may be helpful, please let us know. Thanks.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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Something definitely does not sound right to me here. It does not seem possible that a llmd (if he truly is a LLMD) would tell you that your husband probably has ALS when he has never seen him. What a devastating thing to say and certainly not very professional (IMHO).
I have had muscle twitches and myoclonus (whole body jerking) for four years before I started treatment for Lyme disease. I had 9 weeks of IV Rocephin and Zithromax and I am still on oral Ceftin (2 months). My jerking and twitching has completely stopped. It is such a relief as I was doing it all the time day and night. I know of several others who have had these symptoms and they have disappeared with treatment for Lyme disease - 4 weeks is not enough!
Wishing you all the best. Hang in there and find a good LLMD.
Carryon
Posts: 93 | From Canada | Registered: Dec 2003
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Sounds as though this doctor is not Lyme Literate. Maybe Lyme Friendly.
It's very common for Lyme patients to have twitches. It has also happened that Lyme patients have been misdiagnosed as having ALS.
As far as I can tell, there isn't a single symptom that Lyme cannot cause.
Sounds like it is time to find a new doctor. I know this isn't easy, and it sounds like money is an issue. But if your husband has Lyme and does not get treated, things could definitely get worse.
Be sure to tell whoever recommended this doctor to you how you were treated. We need feedback on what doctors are actually good.
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
ALOT of people here on Lymenet have (or had) muscle twitches and spasms!!!
I know I do!
Late stage Lyme seems to be misdiagnosed as ALS. There are several people here on Lymenet that were either misdiagnosed with ALS or had family members who were.
Just do a search here on ALS and you can read some of the posts.
You need to find a new LLMD! Post your location over in 'seeking a doctor' and members will email you with LLMD's that they recommend.
I am very angry at your LLMD. He can't be a LLMD...That is a horrible thing to ASSUME, especially when you haven't even seen the patient. And to freakin tell you something like that over the phone? At least you didn't give him any of your hard earned money!
Go to the 'seeking a doctor' area right now and someone will be there shortly to help you out with a new LLMD!!!!
posted
I'd say you''ve found a "L..'l'..uYR...'d'..., not a "LLMD"! (I'm talkin a , youknow, Lyme ...'literate'......uh..., ..Yeah, RIGHT...'doc'... (a 'doc', uh. yeah, right.... (more like a DUCK, as they are know around here!..) )..) Aby real LLMD would mention coinfections, and prescribe a sequence of antibiotuc teatmenrs that address cystic forms. (so that the IV is invariably followed by various oral combinations, especially including tinidazole or metronidazole.) DaveS Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Your instincts are dead on right. This guy is a jerk..not a physician.
I have had twitches, spasms, myoclonuc, tremors, etc...all of which improved with treatment.
Lyme is an equal oportunity bacteria...meaning that it thinks that any old cell or tissue is OK by it. So this ducks comments are absurd.
Sounds to me like the insurance company got to him...threatening to withhold HMO payments or drop him from PPO status...etc..or even to report him to the board of medicine for treating lyme. That happened to me with a local ID years ago. His nurse followed me to my car to tell me the truth, as I was leaving in tears.
[This message has been edited by breathwork (edited 04 June 2004).]
posted
Thanks so much for your responses. It really does help to hear all of you feel the LLMD "duck" was wrong. I was floored that he would say that over the phone. He certainly didn't have any qualms about saying it several times. I was referred to this guy by a someone from LymeNet. I think maybe I should email her and let her know what he said. Lyme is scarey enough without the even worse dx of ALS. If any of you know of a good Dr. in the NW or West, please let me know. Thanks again for all your support.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Please email the person who referred that duck so that they know what kind of doctor this is (definitely NOT a LLMD) and they don't make the mistake of referring him to someone else.
You don't want someone else to go through the same thing you just now are going through because of some jerkface doctor!
How insensitive of that doctor.
I'd give that doctor a piece of my mind after finding a new LLMD. Give me his number and I'll give him a call and tell him exactly what he can do with his ALS diagnosis and that phone!!
posted
I did email the gal who referred me to him. She did not know him really and is taking him off her list until further notice. I don't really think Dr.s know what an impact they can make with their words. There is a level of trust you put into a Dr. and their words are very powerful. I know they are just people but you think they would have some human caring and understanding before making such horrible comments and DX over the phone. I just hope he doesn't do this to others. Thank you all for your help and emails. I'm hoping the next Dr. we see is caring and understanding.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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liz28
Unregistered
posted
I've had neuro Lyme for almost four years. As your husband did, I found that abx, while lifesaving, could barely control the neuro symptoms--except for minocycline, which is super for Lyme but which I couldn't tolerate for more than a month.
Since January, I have been taking tons of herbs and supplements instead of mino, along with a heavy duty abx regimen. Most worked miracles, but none have yet proved to be a cure. Still, they are MUCH cheaper than abx, and have improved my quality of life tremendously.
One thing all the useful supplements have in common, too, is that if they work, you should see a change in symptoms within a week (an improvement in symptoms, or a herx), so you don't have to spend a lot to experiment--although brand quality makes a big difference. Don't be afraid to combine ideas from different protocols, too. Like I take a little from Dr. Patricia Kane's protocol, a little from Dr. Zhang's, etc. There's a zillion supplement suggestions on Lymenet if you do a search.
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