Yes, you should get tested! I was bitten by a tick as a child. In 1988, I was told I had M.S. & Lupus. NOT. A year ago, I was rediagnosed with Lyme. U must get tested by a Lyme expert. You must get Igenex labs to test your blood. Most doctors give u a general Lyme test which give false negatives! That test is not specific enough!

Yes getting tested is a must. The symptoms of Lyme disease are so numerous that you could have some you never knew about and addressing Lyme, if it turns out that you do indeed have it, can certainly help the quality of your life. One really big thing with Lyme Disease is diet, it WILL make a huge difference.
Cutting sugar = cutting pain!!! (The diets go much more in depth but sugar makes the biggest difference individually as it contributes directly to the swelling of the nerves)

Good luck!!!

I'm sorry to have to tell you but Texas is still a state where Lyme is a 'no-no'. Along with Oregon.

I'm sure there may be a few doctors who might treat you 'properly' but they will be hard to find. But very worth trying to find. Lymenet.org has a support group list for each state. Texas is found at:
http://www.lymenet.org/SupportGroups/UnitedStates/Texas/

But another thing I have to say----- there are many doctors will say they treat Lyme but will recommend herbs and supplements. Those might be alright as adjunctive to treatment by antibiotics but will NOT do anything to the bacteria.

So----- get started and keep checking back with us.

About diet---- a healthy diet is essential, of course. Cutting down on sugar is probably always good advice but not 'essential'. Moderation, always.

Thanks for the information and support. I'm living on a very limited income (SSDI) and getting my healthcare through the county. The thing that gets me about states like Texas where Lyme disease is a no-no is that there are CONFIRMED cases on the CDC list for almost every state, yet the CDC then says "this disease does NOT occur nationwide". This sounds terrible, but I could tell my doctor I had gone camping in Pennsylvania - LOL. Toxoplasmosis is another disease that's very common but rarely tested for. Anyway, there's certainly nothing wrong with eating better. I've been trying to do that recently anyway.

Dear Lady, sorry to hear about your income info.! Now this disease can be very expensive to treat! Do u have Medicare? I do. They happen to cover Igenex labs' costs! I'm going to file all my Lyme bills to insurance. May not cover, but I'll send anyway. I hate filling out insurance forms. The irony of this whole thing for u, is George Bush had Lyme, while he was in office!! BTW, my naturopath gives me herbs & supplements. He has definitely helped my arthritis in spine! The big one he assigns me r Samento & MC-BB-1. I can't take Banderol. It activates my seizure activity. He is giving some new drops to kill my neurological problems. That part is my coinfections My medical doctor for Lyme isn't that good. Need him to sign papers for Lyme. I will pray for u. If I had lords of money, I would use it to help people suffering from it! Lyme can kill u, if left untreated.

I've been getting Rocephin IV for 6 weeks.

You have to be disabled for 2 years before you get Medicare. Go figure that one out! They say it's a "cost saving measure and unlikely to change". Plus, I live in Texas, which will not be expanding its Medicaid program under Obamacare next year.

I believe you should be tested. There is a new test that just came out in Novemeber that is far more accurate at detecting lyme than previous tests. Plus, if you want to follow any kind of treatment regimen that might provide you with symptom relief, you definitely want a definitive answer. My psychologists daughter wasn't diagnosed with Lyme until what was likely 15 or so years after the incident. However, she is now being treated for it, which is a good thing! Good luck!

chailover, can you tell me more about that "new test that just came out in November that is far more accurate at detecting LD?"

I twice tested negative by the standard test which I've read is reliably only about 40% of the time. Several doctors have tested me for just about everything else under the sun--the same expensive runaround many LD sufferers get.

I have not had the Western Blot Test because my insurance won't cover it ($1200 my cost) . Fortunately, I found a doctor who agreed to treat me experimentally for 30 days with the commonly prescribed antibiotics.

I quickly improved a lot, but after about 6 months of that regimen, I am still riding the LD roller-coaster--pretty good one day and pretty bad the next day. My primary symptom is acute, chronic fatigue, and relatively minor aches and pains which come and go all over my body.

I'm thinking I should take other tests to verify whether I have LD or maybe something else. I'm one of the many who didn't find the tick nor the rash, However, my symptoms closely match other LD chronic sufferers, so I may have had LD for several years.

So, I hope the new test you noted will be more affordable than the California lab's Western Blot Test (supposedly done only by that lab) and that it might be covered by insurance.

@Jim2----- if your avatar is correct (grey hair) are you by any chance on Medicare?

If so, MediCare will pay for most of the fees for testing through Igenex as someone posted above.

Excuse me for 'inferring' that you might be a senior citizen. No fault in that, though. for it just means you're wiser. :)

About not getting a positive WB----- I was able to take Igenex's WB test several times (because of my very good ins. co.) and never got a positive. I did have Lyme, proven by a spinal tap. So don't put too much credibility on a positive or negative test---- yourself---- but doctors may need one to 'prove' to the insurance company that your treatment is necessary. (Tail Wagging Dog Syndrome)

There are many reasons a person doesn't get a positive result when they actually have the disease.
http://www.anapsid.org/lyme/lymeseroneg.html

Have you visited http://www.ilads.org/?

About 'that new test'---- I don't know if Chailover meant the new one by Advanced Laboratories blood culture test. If so, there are still some reservations about how good it is or not----- but what do we care if we can get the go-ahead for treatment. However, if the culture comes back negative, it could bite you in the derriere.

And I'm not sure it's been cleared by the FDA yet.

Cave, thanks for the reply and valuable info. I need a bit more "wisdom' before I can get Medicare--18 months to be exact. I'm having to get by on my wife's group insurance, as I've been unable to work, for more than a year.

I have been considering trying to get help from Medicaide, but I believe they have to see a positive test before they might help. Do you know of anyone who has been able to get help from Medicaide for LD?

I am familiar with http://www.ilads.org, as well as many other LD focused sites. Having read a number of your posts, I can see that you are admirably, well versed about LD. I should know more than I do, but the damn fatigue has me unable to do much most of the time; And on relatively good days I work myself into exhaustion trying to catch up with chores. Hence, the delay in thanking you for your sound advice.

Thanks again!

@Jim
I believe that in order to get Medicaid a person has to be qualified as ''disabled". (Anyone, please correct me if I have mis-stated anything, for I've not been determined 'disabled' nor have I been on Medicaid.)

Getting qualified as ''disabled" is a long and tortuous route with pitfalls put up all along the way to deny it. But it can be done.
I also think that if you have a retirement account, 'too much money' 'stashed in a bank or stocks etc those may disqualify a person for Medicaid.

I know people who have, wisely, 'stashed' their money years ahead in preparation. But who ever thought we'd be cut down when so young and when so healthy???

So back to positive test. I'd willing to bet the ranch that without a positive test you can kiss Medicaid away! Unless a person can 'prove' they're disabled with objective (not subjective) proof.

I do know people who have received Medicaid when sick with Lyme. They often had the help of an attorney who 'specializes'' in getting disability----- for a percentage. The trick is----- if you're 'of a certain age' you won't be accepted because your 'percentage' wouldn't amount to enough to make it worth his time. But it might be worth your time to try to find one in your state. I'm just relating what was true for me years ago and in another state.

I also know people who have received Medicaid with a little 'judicious' editing of their story. I'm too much a chicken to try that.

I'm only 'well-versed' about Lyme because I had to be. And because of the rage (now a slow-simmering one) I feel about we're not diagnosed by most doctors and why we're not given a simple prophylactic dose of an antibiotic upon any tick bite. Another story for another rant. (grin)

SSI vs SSDI- info very important!
I just got tricked by the state-twice. SSI is supplemental insurance, such as low income, need assistance because you are unable to work due to disability.

SSD is disability, meaning you have worked long enough and paid into the pot and you are unable to lick stamps and put them on an envelope for, or fold mass mailings, and if you think I'm kidding, they do NOT take into account your previous abilities vs your current disability, only that you can not perform any job anywhere for any wage.

If you apply for SSD, as in my case and they call you and say that your application is missing some information, then they say, "does your spouse work?" "what is their approximate monthly income" those questions are NOT relevant to your eligibility for SSD. But if you do apply for that, they will deny you because you don't need supplemental income and then you think you have been denied, but the fact is that you were evaluated for the wrong assistance. I stopped her in her tracks the second time and said, Why are you asking me this and she said my application said I was interested in applying for both. I told her no!

So please as much as you are cognitively exhausted, pay attention to what you are applying for. It takes 3-4 months after you sign off on your medial release for them to give you an answer. Over 50, better chance, under 50 put your boxing gloves on and make sure you have every last symptom and how it makes you unable to function, ready to go. Get an attorney if you can't sort it out. Many people are initially declined disability and then it takes sometimes a year or more for the appeal process. While you will get retro paid to your initial application, who can go 18 mos. without income? Tiring day or I would send links to this info. Best of luck.

FWIW, attorneys that specialize in helping the disabled get SSDI can only get a percentage of BACK PAY. If a person has been trying to get approved for 3 years, for example, and gets approved for SSDI going back the full 3 years, the lawyer gets 30% of the back pay, but they don't get any of the current monthly payments. If you don't get approved for any back pay, the attorney gets nothing. You really don't have anything to lose by signing up with an attorney when you first want to apply.

Sorry to have been out of touch for so long. One of the reasons I get so tired is that I'm 63 with LD and 2 young daughters, ages 14 and 11, and a 54-year-old, very active wife,and a fairly large home to maintain.

And my doctor took me off two of the antibiotics I was on for about a year, so now I'm just doing 200 mg of Hydroxychloroquine twice a day. I was greatly improving until the cutback. My body's initial reaction to that was to crash back into the extreme fatigue I had before starting the 3 antibiotics about a year ago.

But, two weeks later I may be pulling out of that as I'm feeling a little more capable--but not nearly as capable as I was feeling just before stopping 2 of the 3 antibiotics. Has anyone had a similar reaction, after being on antibiotics for many months then stopping them? Are LD sufferers often on several antibiotics for more than a year?

I guess I will give up on the disability idea, due to savings and holdings, and not having had a positive test to show. All I know for sure is that the antibiotics took me from barely able to stand and walk, to where my worst day is what my best day used to be pre-treatment. I hoped I would be able to go back to work by this coming fall, but right now I'm thinking that's a little too hopeful.

I hope that some or all of you kind people are feeling better and better. LD surely can suck the life out of a person.