My muscles hurt very badly. Does anyone know what might help? (Before I get meds., and in case I'm on my own a while longer).
Also, what questions do I need to ask when I go? They still aren't sure what this is. As far as I know we haven't truly ruled out anything.
I'm on my 2nd lyme test (ELISA only). I've also been tested for Lupus, (which, tests are also known for unreliability) They are still considering fibromyalgia, MS, Lupus, Lyme, and I guess a whole bunch else.
I don't know what to push. I have a hard time standing up to docs. I am only 18 and new to the world of adult medicine.
Any help??? Please????
Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
You need to have your blood work done through Igenex labs in CA. www.igenex.com
Call them for a kit......have blood drawn at hospital lab or at the doctors office( Labcorp won't do it). have the wetern blot IgG and IgM done.............cost about $180.
Really what you should do is find a LLMD. Post in seeking a doctor. An LLMD will know what to do. You could be wasting valuable time chasing a diagnosis with a bunch of docs that will never make a Lyme Dx.
It's complicated. Your best bet is finding an LLMD.
All doctors have a comfort zone of conditions they are familiar with and have experience treating. Lyme is outside this Neuro's, as evidenced by his ordering the Elisa tests. They are less accurate than a coin toss, and a waste of perfectly good blood. Alot of people have been mislead into delaying treatment for years because of these worthless tests.
He is trying real hard to help you though. What is best for you and would probably make him more comfortable would be to be able to hand you off to a Dr. that specializes in tickborn diseases to have the Lyme checked out and treated if it is found.
Everybody wins. You are in experienced hands, and he had done his good deed.
The catch is you need to find a Dr. in your area that knows how to do this...
Can any of you help this young lady find an LLMD in the vicinity of Georgia? Please?
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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Remember, fibromyalgia is not a disease. It's a constellation of symptoms. I was dxd with it 25 yrs ago, only to find out 4 1/2 yrs ago that i've had Lyme for 46 years.
And if they don't run a Western Blot from Igenex, it's not worth the time and money.
Good luck!
------------------ oops! Lymetutu
[This message has been edited by Lymetoo (edited 01 March 2005).]
posted
I went to see my GP once, got sent to the neuro. I have only seen him 1 time. but he reordered my lyme test after the first came back neg. (still awaiting those results)
I am going to see that same neuro on Thur.
Do I need to go to see an LLMD now?? I mean, I've only seen the neuro once, so I don't know what he'll be thinking after I tell him my new symptoms.
I don't want to go outside the insurance co. if I'm not sure. I can't afford even $180 at the moment.
Any advice??
Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005
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posted
There aren't any LLMD's that I know of in GA. Your best bet would be Dr C in MO or Dr J in NC.
Sure you can see the neuro again, but unless he ordered a Western Blot from Igenex or at the very least, MDL, then it "isn't worth the blood", as James said.
With ALOT of luck, maybe this last test will show up positive, but don't hold your breath. I'd be willing to bet alot of money on your having Lyme. Just my opinion and hunch, since I'm not a dr!
I hope things go well for you and that you get some answers soon. We want you well!
quote:Originally posted by threefries: Do I need to go to see an LLMD now?? I mean, I've only seen the neuro once, so I don't know what he'll be thinking after I tell him my new symptoms.
The problem as we see it, is that most drs know nothing about Lyme testing and even less about Lyme treatment. THAT's the big problem.
Just thought I'd pass along some information about the Igenex Lab in California.
Many folks with insurance do get reimbursed the $180 for the Lyme Western Blot tests (or whatever the current fee is.) However, some have only received partial reimbursement.
It just depends on the type of insurance policy you have. You may or may not be reimbursed.
Here's how it's done: First, you send payment with the blood sample. Then, Igenex very quickly mails you a statement of fees that you can immediately submit to your insurance company for possible reimbursement.
Igenex Lab also attaches an explanatory information sheet about the Western Blot test codes, so the insurance company is more likely to reimburse...., just a thought for you.
Also, you said you have an appointment this week with the neuro. I sure do hope you can take someone with you whether it be a parent, relative or friend.
It helps immensely to have someone with you, especially if you're young. Sad to say, but you'll be treated better than going alone.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
You need a to be tested for lyme threw a LLMD and a good lab.Igenex, MDL,labs or Bowen.You need a Western blot and a three day urine test bummped up while on High abx to kill spirochetes and free up antigens 7 day course of amoxy should do it while taking the urine test. And as far as pain get some vicodin to tide you over.
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
A copy of this is stored in computer Help section.
[This message has been edited by treepatrol (edited 02 March 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Threefries,
MDL does not require payment up front for labs. I just sent my insurance info. The only cost was for shipment of the samples. You may want to contact them.
From your other posts, it seems like your neuro is really trying to help. I wonder if he would be willing to talk to an LLMD via phone for guidance? I know it's hard for you to travel out of state for an appointment.
I first had problems when I was 14. I saw a wonderful orthoepedic specialist, because my major sympoms was localized to a knee. He tried his best and sent me to every doctor he could think of. But I never got a diagnosis. It was too out of his league.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Read this and bring it to your appt for reference if you need to. Maybe you will feel more confident after reading it. There is also a symptoms checklist that you can use to show your doctor.
Unfortunately, if your family isn't there for you, you are going to have to advocate for yourself. It's stinks, but we all have advocate for ourselves to some extreme.
You need to convince your doctor to do the Western Blot and make sure it is sent to one of the labs mentioned above.
In the meantime, get in contact with the LLMD and tell them about your situation. Ask them if they would be willing to consult with your doctor.
Finally, start reading about the Western Blot (newbie links) and understand why it can be negative, so you will be prepared to dicuss it with your doctor if it does come back negative.
Keep reading and keep asking questions, the people here are great and will help as much as possible.
posted
Oh yes, the sore, achy muscles. Do you get the stiff, sore neck and shoulders?
OK. I have some ideas, both for the Dr. situation ans a few easy inexpensive things you can do right now to help you feel a little better.
First the Dr. situation:
As you can see finding one with both the experience AND willingness to properly diagnose and treat this is not easy. But you also have some assets at your disposal that can be put to good use.
Lets do a little triage... dividing things into 3 categories so we can concentrate on the most important to deal with first:
1) Things we can do right now. 2) Things that are important to do, but can be done later. 3) Things we can do NOTHING about.
You have the appointment with the neuro tomorrow, and it seems he at least wants to help you. His instincts are telling him Lyme... and your symptoms are so familiar they are telling us with it "lyme" also.
You only have his attention for a few minutes, so you need to use them to your best advantage. You can't educate him all about Lyme in that time.
What you want to do is to convey firmly your desire to have Lyme as a possible cause checked out thoroughly by someone specializing in that disease.
What you DON'T want is for him to just assume you don't have it just because of a couple of negative Elisa's.
If he had any idea how high the false negative rate was he would not even order them. Some 70% of Lyme confirmed by other means test negative on Elisa. In the Southern and Midwestern states the likely strains of lyme bacteria might NEVER show on an Elisa. There are Elisa type tests for other diseases like HIV that work, but the ones they have for Lyme are no good.
Remember that there are NO lab tests yet that can rule out Lyme. It is a clinical diagnosis based on symptoms, and the lab tests are just clues to confirm it.
OK... Here's what you can ask the Dr. for:
1) Tell him you would like to have Lyme checked out more thoroughly by somebody specializing in that illness and with tests known to have better sensitivity. Just ask if he and your GP would assist you in whatever ways they are able in getting this done, so you can know for a certainty what you are dealing with. Just ask him to help you with getting this checked out.
2) Also ask him NOT to refer you to an Infectuous Disease Specialist, unless he PERSONALLY knows one for a certainty that correctly diagnoses lyme patients AND is currently treating them. His first instinct might be to refer you to an ID doc. For some reason the I.D. Docs have been unusually cruel and hurtful to people suffering with Lyme.
3) Also, ask him NOT to give you anything that would be harmful to someone with lyme until you know what you have. This would be any kind of steroid. As for other things that might help your neuro symptoms and discomfort... Say please and thank you to him.
If either of them offer to get the Western Blot done for you... say yes with a big thank you and tell them you will bring them the information to get the test kit sent to them. (Don't settle for a Western Blot from just a regular lab though, results have been poor.) They can also give you 5 days of an antibiotic (such as Zithromax) right before the test, so that the bacteria will show up in your blood where they can be detected.
Don't sweat the $180 for the Igenix test right now. That can be found somewhere when you get to that point.
You can't get everything done tomorrow. It will take awhile to figure out where to go and what to do next... We will try to help you with that. We don't want you to fall through the cracks.
As for help right now...
My wife and I are not heavily into all the vitamin and herb things, but have found a few basic things helpful to feel better.
If I had to pick only 2 they would be B vitamins and Magnesium. Both seem to get depleted with lyme, and the B's in particular are essential for the neurological function. B12 especially is a problem for us lymies. The best way to get it is with an injection... One of your docs might give you one if you ask to see if it helps you feel better... assuming you aren't too afraid of shots. Otherwise, look for sublinual B12 drops at a Walgreens, or sometimes in the vitamin section at wal Mart. It is a pleasant tasting liquid you put under your tongue, and is only about $5. I've taken the b12 shots occasionally for years when i need to do highly stressful difficult work. It really helps some people. It is worth a try in either form. I would at least try the drops and see if they help you.
Magnesium Citrate is the best form of that essential mineral, and it need not cost alot. The grocery store vitamin sections tend to have just the Magnesium Oxide form. It is better than nothing, but the other is better. (You don't need alot... too much at one time can act as a laxative.) This may help with the muscle aches... (Right, Recipegirl?)
I'm sure others can give you more suggestions.
Also, my wife is a Registered Nurse, and we are both just starting our treatment programs. An RN cannot prescribe or treat, but she is a very caring compassionate person with years of medical experience... and she has free cell phone minutes on the weekends. In case you feel the need to talk woman to woman about all this sometime just ask. She would be happy to help. (But never post phone numbers or real names in public messages of course... I am sure you know that. Use private email.)
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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posted
Oh...Something else: You possibly as a teenager have an ASSET that can help you get some fairly good, IMMEDIATE treatment for Lyme, and that will not harm you even in case you turn out not to have Lyme afterall.
What asset you say? Are you ready for this? PIMPLES!!! If not, perhaps you could eat a bunch of chocolate and get some.
A popular oral antibiotic, Minocycline (Minocin) is widely prescribed for months and years at a time to prevent acne. Insurance covers it without batting an eyelash for this.
It also happens to be pretty good for Lyme with alot of people. In fact we are ourselves taking it for Lyme right now under a Dr's orders.
Your Doctors may strongly suspect lyme, but be unable to prescribe an antibiotic for Lyme without more to document a diagnosis....
But they could prescribe an endless supply of Minocin to keep your pretty face from getting a pimple scar with no questions asked.
I think 100mg of Minocin a day is common to prevent Acne, that is what a friend of ours is getting from her Dermatologist. Our LLMD is trying to get us up to 200mg a day of it gradually, just for a comparison. It is a good one to start with as it also gets several other things that can be found WITH Lyme... besided pimples.
Minocycline sometimes gives a strong achy reaction to people with lyme infections as it kills bacteria, and that in itself helps diagnose that one has lyme. (The Herxheimer reaction you have probably read about.)
It might be worth asking your Dr. if he could prescribe you some Minocycline for that big pimple on your forehead that you are going to get after you eat those two pounds of chocolate tonight.
Even if you turn out not to have lyme at least you will have nice, clear, pretty skin!
We hope all goes well for you tomorrow!
Regards, James
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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What James says. Wow, he makes everything so understandable.
You asked about aching muscles. I'll be happy to share about the types of Magnesium I keep around the house.
As for you being l8 and living at home, it might be a good idea to keep your folks informed about it so they don't think we're trying to be doctors and prescribe stuff. We can only share our personal experiences.
Sorry, l feel like we're overloading you with information. Just print this page out for future reference, if it's easier on you.
1. For Convenience:
I keep Magnesium Citrate capsules on hand. Mine are made by the brand Nutricology, but most folks just get a brand they like at the health food store. I follow directions on the bottle.
2. For fast-acting Magnesium: I keep several green bottles of liquid Magnesium Citrate in the refrigerator. It's like a $1 from Wal-Mart or any drug store. It's in the laxative section.
The trick is to use minute amounts about every 2 hours on days your home. If one takes about 1/4 teaspoon-----it'll be out of his system within 2 hours. It absorbs quickly.
One can add tiny amounts gradually, or beware DIARRHEA.
If my husband comes home with a headache, he takes a tad of that & gets better fast.
Just be sure & never overdo on the liquid Magnesium. Low, frequent doses are the key-----if one prefers to use this some days.
3. Magnesium Malate is the form many like for muscle pain. I have some by Source Naturals.
4. For achiness or "lyme flu" as I call it, I have always taken Motrin because I can tolerate it. I always take it with a snack or meal or it can tear up the stomach. And, I always follow the exact directions on the label.
Whatever over-the-counter medication someone normally takes to help a regular headache, might also be used to ease the pervasive achiness, as well.
Remember, one step at a time & things will eventually come together.
Hope this helps. We're all rooting for you so you can find out the root cause of your symptoms. Hang tough.
Take Care, Jan
[This message has been edited by Recipegirl05 (edited 02 March 2005).]
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