posted
I was diagnosed in July 2012 with LD and went through 4 wks of Doxy as treatment. Now 3 wks post treatment I continue to have pain in my shoulders/neck, and I am getting some arthritic pain in my arms, hands and feet.
My doctor is referring me to a Rheumatologist because she doesn't think it's the LD causing the pain. Please PM me with a doctor in my area. I am in southern MD, but will travel. And in this area we are fortunate enough to have Johns Hopkins close by, so I would be willing to go there. Thank you!
Posts: 50 | From Maryland | Registered: Sep 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sounds like you really need a good LLMD
dont waste time and money on docs not referred from here
it will take me awhile to get a list together but i will send asap
maybe others will get to you sooner
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
First of all, those of us who have been in the lyme community for some time in the state of Maryland will all tell you to forget Hopkins for lyme disease.
They do not want to get involved with lyme disease at all. I read an article a few years back in a local magazine where a doc in Hopkins said so straight out. He said it was too controversial.
I went to Hopkins looking for my diagnosis. The doctor never thought of lyme. So, I went to a different doctor (not in Hopkins, but the same specialty) 2 weeks later. He listened to me and examined me and said he thought I had lyme. He tested me and that is how I got my diagnosis.
So, just forget Hopkins for this disease.
Your story is the same as mine. I was given 4 weeks of doxy and then the doc didn't want to help me anymore. That was my primary care doc!
The doctors are following the IDSA (Infectious Diseases Society of America) lyme treatment guidelines. They don't want to deviate from the guidelines, even if the patient is still obviously sick with the same symptoms after the four weeks of doxy.
So, that is how I was forced into finding lyme support groups to get names of lyme doctors. Lyme doctors know that lyme is not cured with 4 weeks of doxy. They will treat you until you are well, just like is done with any other disease.
Forget the rheumatologist also. Your doctor has been miseducated by the IDSA to believe that lyme is easily cured. That's why the doc is dismissing lyme disease, even though you have the same symptoms as before. You don't need a rheumi. And, above all, do NOT take any steroids no matter what, unless your life is at stake.
If a person with lyme takes steroids, it could cause permanent damage to them and can lead to an incurable case of lyme disease. That is not my opinion. It is the opinion of Dr. Joseph Burrascano, lyme disease pioneer and the most successful lyme doctor on the planet prior to his retirement. People came from all over the world to be treated by him.
I will send you the names of some lyme doctors in Maryland. You are going to have to educate yourself about the major medical controversy that lyme is involved in and decide if you are going to believe mainstream doctors (that lyme is easily cured) or the lyme community and lyme doctors who know that lyme is extremely difficult to cure.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I thank you both for your help. Can either of you tell me what I can take for the foot pain? My feet crack with every move, and my heels and the bottoms of my feet ache so badly. I have a field trip with my daughter's class tomorrow and I don't know if I'll be able to go. I'm 39 and in good health other than lyme disease. It takes a lot to make me cancel something like a field trip, but of course you already know how bad the LD pain can be.
Do you know if Tramadol or Aleve are helpful? Ibuprofen and Skelaxin doesn't help.
Posts: 50 | From Maryland | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, my lyme doctor recommends tramadol for moderate pain. It worked well for me.
Other good options are certain antidepressants such as amitriptyline and Cymbalta. A friend of mine is taking Cymbalta and has gotten a lot of relief from it.
If you buy the book "The Lyme Disease Solution," you can read all about the various pain options there. For cymbalta, it says to take 20 -120 mg.
Then, there is Neurontin 100-900 mg per day. I tried that but the side effects were too much for me, so I had to abandon it. Made me feel like a zombie.
And, finally, the book recommends Lidoderm patches.
What is so great about the book is that it gives many, many more suggestions that fall under the "complementary and alternative natural therapies" heading also, and it explains how each of the meds and alternative therapies work to reduce the pain.
Some examples include Arnica (available at health food stores), Traumeel ointment, magnet therapy, topical emu oil with glucosamine, etc. He gives instructions and dosages for each.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes...u can tx the pain but please dont forget what TF said. you can't "bandaid" this disease. you are worried about one day of foot pain...if you dont get REAL tx you will be worried about raising your kids.
please contact a doc TF sent you. i do have lists but i dont know the docs in your area and it is best ot go to someone who is reallly known first hand by someone here.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
High doses of msm are safe and can relieve pain. It is cheap and Vitacost brand is good. Tumeric also helps but I think the Thorne brand makes the most bio available form out there.
You can go safely up to 10 grams of msm twice a day. Right now I use 8 grams twice a day.
Tramadol kept me awake at night. I occasionally use Vicodin, but hat to use any narcotics and they don't always work. I have done better with supplements over the drugs.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I have reached out to two of the Doctors that TF recommended (and thank you, TF for the very well written recommendations - the information you provided was extremely helpful and very clear). My biggest question now is what do I do now while I am waiting to get in to see one of these doctors and start treatment? I can't imagine living with this for 3 months and just waiting (if I can even get in to see them). As I am sure you all have experienced, this disease is wrecking my work life and my home life. I am so severely depressed over this and so completely consumed by it that I just don't know what to do next. Tramadol was too hard on me. I felt like I was going to pass out for 8 hours of the day. I was very pale and weak the whole day. Lately I've been feeling like I have low blood sugar. At first I thought it was the Tramadol, but then I felt weak a little this morning. A friend gave me a peanut butter cracker and it helped. I just don't know if it's the LD causing it or if it's something else.
Posts: 50 | From Maryland | Registered: Sep 2012
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posted
Another question. I blasted an email to my primary doctor explaining to him that his plan is flawed and that I cancelled the Rheumatologist appt because he is looking in the wrong directions. I explained that we need to stay focused on Lyme Disease and not steer away from that. He emailed me back asking if I wanted to go back on Doxy until I can get in to see a specialist. Can I ask for your opinions on this? My gut says yes! but I'm wondering if any of you have any input as to whether it would be helpful.
I've noticed that I'm really shaky. My daughter even said something about it this morning. I woke up and had my coffee, and then a bowl of cereal. 30 minutes later I am still shakey. I wonder if I should have my blood sugar and blood pressure tested at the local fire dept.
Posts: 50 | From Maryland | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, if he is willing to give you doxy until you can see a lyme doc, take it!
Doxy kills lyme (300 mg per day or higher). At lower doses (200 mg per day or lower) it keeps it from multiplying. (page 14 of Burrascano) So, it's good.
This does not guarantee that it will get rid of your shaking. But, it is fighting lyme while you wait for your lyme doc appointment.
Maybe you can borrow a blood sugar monitor from a friend who has one. When the shaking starts, test your blood then and there. If it is really low (like under 70), then you may be suffering from hypoglycemia, but I doubt it.
Hypoglycemia is treated by eating. So, you have shown that your case is not hypo by eating and still being shakey.
My hubby had hypo for 30 years before becoming prediabetic. He was officially diagnosed by an endocrinologist. Literally with the first bite of food, he would feel the shakes starting to subside. To treat his hypo, he carried food with him wherever he went. So, I KNOW you don't have hypoglycemia.
He was also told to avoid caffeine and simple carbs (sugar, white bread, etc.) as these can bring on a hypo attack. He was told to eat frequent small meals.
Here are some lyme symptoms lifted from pages 9-10 of Burrascano Guidelines:
Twitching of the face or other muscles
Tremor
Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity
So, this symptom may not go away until you get good lyme treatment.
Also, eliminate coffee and caffeine totally from your diet. Caffeine contributes to shaking, so you don't want it at all.
That means no chocolate, no cocoa, no sodas with caffeine in them, etc.
When you get to a good lyme doctor, you are going to be told to eat this way anyway. So, you may as well start now. Review the Burrascano diet guidelines on pages 34-35.
When taking doxy, be sure to take it in the middle of a meal to avoid stomach upset, reflux, heartburn, etc.
Also, there are some things that should not be taken with doxy. Be sure to read the package insert to make the most of your doxy.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
He has already filled the Rx for Doxy, so I will pick it up and start back on it today. Thank you for the info on Hypogylcemia. I will start to wean off of the coffee. I had a soda today thinking the sugar it he soda would help the general lack of energy. My mom has a test kit, but she needs it every day, so I can't borrow hers. She lives too far away to go to her house and use it when I need it. I am pretty sure the fire department will test blood sugar, so I'll check into that and if they do I will have them check it when I'm shaky.
I've been reading the guidelines, but it takes time to get through the whole thing mainly because I get so discouraged reading it and have to stop and take a break so that I can get my mind off of it. I do know the side effects of Doxy and I tolerated it well last time, so I hope to have the same benefits this time. He only filled it for two weeks and said to get in to see a specialist sooner the better. Right! I don't think I'll be in to see anyone in two weeks!
I can't thank you enough for your help and input.
Posts: 50 | From Maryland | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sugar and simple carbs give you a short burst of energy and then drop you down. That is how these foods can bring on a hypoglycemic attack.
What goes up must come down.
The goal is to keep the blood sugar level--no spikes up and no drops down. So, eat regularly and don't eat things that cause blood sugar spikes. These are the rules for hypoglycemics.
Posts: 9931 | From Maryland | Registered: Dec 2007
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