posted
While I am trying to get my neurologist to acknowledge that I most likely have Lyme I keep having pains and sensations that come and go.
One part of the day I will have severe pain in my neck, mid and lower back. Then it will shift and move to my arms, then legs.
Sometimes I will have swallowing and speech issues then they resolve within 10-15 minutes. I am having so many issues it just makes no sense at all.
Then there will be times where I feel 100 percent fine, but trust me, that is short lived. Maybe 15 minutes max before some sort before symptoms return.
Is this typical?
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Yes. I think it's because the bacteria move around, causing a continual shift in symptoms and locations.
I would suggest that you ask in the Seeking a Doctor section for referrals to Lyme-literate doctors to start treatment.
There are some simple natural remedies as well. One of the strongest anti-inflamatories for me is turmeric. I take capsules of turmeric everyday to reduce inflammation. I get turmeric in bulk at the health food store and dip empty 00-size capsules into it.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Thank you. I have contacted two in my area. Unfortunately they are unavailable to bring on new patients at this time so I am begging my neurologist to help me. I wrote a heart felt e-mail to my neurologist tonight. I have been in severe pain for 48 hours that comes and goes. I am taking Norco for pain and that barely phases it.
Not to mention the headaches, those are the worst.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Pain can be so difficult to deal with on a constant basis and finding just a little relief can also be a challenge.
You may need to travel further to find a LLMD , or an infection desease doctor who is literate with Lyme, but that can be extremely unlikely and not useful. Best to try and committ to find a LLMD with in a greater radius of you home .
Also make sure you put yourself on any waiting lists
Good luck and my you find relief Brian66
Posts: 45 | From Ct | Registered: Jun 2015
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posted
I'm going to send you a PM regarding a neurologist in your area who is not afraid of lyme.
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
Just a quick reply since I am at work. I went to my neurologist today. He and I went over the data that I had and did confirm this is what I have.
4 years worth of medical data and blood work was reviewed and it was concluded I do have this.
I was referred back to my PCP to see if he will be willing to start 30 day treatment just to get things going then I was told to find someone who is an infectious disease doctor.
So..... having it confirmed has put the stake in the wall. I was hoping it was not.... but the science pointed to every episode I dealt with that I had it. My blood pressure was high 160/100.
For me that is high.
Well I am going to go, I will be on later.
Bye for now.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Infectious disease doctors are generally the ENEMY of people with lyme disease. They follow the IDSA (Infectious Diseases Society of America) lyme treatment guidelines.
They will not give you treatment that will cure you because they don't know much of anything about lyme disease. And, nearly everything they think they know about lyme disease is wrong!
So, for example, if he puts you on IV, he will have you on only one medication. Lyme can evade any one med. Read it in Burrascano's Guidelines.
And, he will not test you or treat you for the lyme coinfections. So, you will not get well. Burrascano knows that and ID docs don't.
I could go on and on. You will just waste time treating with an ID doc, and money. You really need to go to a lyme disease specialist.
Most of us on this board learned this the hard way--by going to ID doctors. If you don't know about the major medical controversy that surrounds lyme disease and the 2 camps (IDSA and ILADS), then you need to educate yourself on it. Otherwise, you will become very confused when the ID doc tells you you are cured after 30 days of his IV single medication.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You being given the run around on this with various Drs. This will continue until,you drop dead in Texas OR get well with a real LLMD outside Texas. That's what happend to my uncle, huntsville, Texas, Death certificate reports Lyme disease CDC positive, the Texas Health Department is supposed to contact those who are CDC positive, No, they did not, No one is doing their job inTexas.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
I suggest you do alternative doctor until find LLMD. You could also start with Buhner herbs and infrared sauna. Some chiropractors treat lyme and have pulse electro magnetic field, which is good.
Also look at anti-parasitic thread
Posts: 722 | From CA | Registered: Dec 2011
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posted
Thank you all very much. Tonight has been emotionally distressful. Tonight at work was long and sad but at least I am keeping myself busy.
I am going to ask the PCP for antibiotics until I can get to LLMD. There are two close by but one is not accepting patients.
I am seeking all available routes you all have mentioned. Trust me, I am taking your advice on the ID's. I do not doubt you at all regarding their behaviour.
As I am realizing, I must be my own health advocate and take matters in my own hands.
I am not panicky, but more so coping. Today actually was a good day. Not too much pain. However I know that the good and bad days will come and go in waves.
I know from a biological sense these little creatures are genetically intelligent and can outwit the antibiotics.
I will let you know what the PCP does in the morning.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
There are a few, very few, ID docs who are lyme literate. As a rule though, they are not, and best to assume that is the case, unless you hear otherwise from lyme patients. We mostly know the exceptions.
Posts: 2888 | From USA | Registered: Mar 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It is my understanding that there is an active lyme patient organization in TX. You should get in contact with them pronto.
See support groups listing on left side of this page.
Also, here is a group with a website, and they also have a facebook page.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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