I have diagnosed myself with Chronic Lyme disease. I have absolutely no idea how long I have had it, but it seems to be effecting my brain. LLMD's do not take medicaid and I cannot afford them! I went to a random doctor for the first time in decades, and told him my suspicions. He then ordered an ELISA because there was apparently no other options. It's been over a week and I haven't heard anything so I suppose it was negative. I can't stand doctors! Why? Because everything always comes back normal! What happens when blood work comes back normal? I get dismissed. I don't play!! I don't enjoy hanging out at a doctors office like some people do. So I'm considering starting my own treatment. Does anyone have a medical treatment protocall they got from an LLMD? It would be MUCH cheaper to order my own antibiotics online than it would trying to get a proper diagnoses. I highly doubt that a regular doctor would even consider 2 or 3 years worth of antibiotics anyways.
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
I hear you, but must disagree about a do-it-yourself approach. Lyme is a complex infection, and half the time it comes along with one or more other infections (co-infections) that need separate and usually different treatment.
At a certain point, you might be able to figure out an herbal approach to use to whatever you have (Lyme and/or various co-infections), but that will mean finding out from a doc what you do have, and becoming an expert in herbal meds and in Lyme. You may also find out over time that you have additional hidden infections that were being masked by the others. Not a DIY project.
Rather than assume that the ELISA test was negative a week ago, call the doc's office and ask when the results will be back. Docs do not usually just file test results and leave it at that.
I know it's frustrating, but being charge of your medical situation means managing the other players, not trying to be an MD. Lyme is definitely a team sport.
Thanks! I completely understand what you are saying. I also understand that Lyme test, especially the ELISA are incredibly inaccurate. From my understanding, some people have multiple negative Lyme test and only a LLMD has the sense enough to diagnose just based on symptoms. I don't want to go at this alone, but I don't want to end up in a nursing home either. Only I know what's really going on better than anyone. Particularly when they don't even know me. That's why they are so reliant on routine labs, which in my case were completely normal. I asked for those results but as for the ELISA, I figured the doctor would only call if the results were positive. How long do you suppose it takes for the results? I didn't really want to bother them at the office if I didn't have to.
Herbals are not proven and are quite a waste of money. I have blew so much money on that nonsense.
It's difficult to accurately explain everything to an MD, particularly when I have a wide rang of symptoms that have been compiling for years. It kinda sounds like I'm a munchausen patient or something. He did order a CT scan with contrast though because of multiple protruding cyst from my scalp. They obviously showed up but they seemed mostly superficial. I'm not sure if anything Lyme related would show up on that or not. I haven't heard anything back on that either.
I appreciate your response!
Sorry if I sound like an ***!
You don't at all sound like an *** (as the computer system spells it -- ha) -- you sound like a fighter, like a pro-active survivor -- and that's what it takes to beat Lyme and whatever evil little friend it brings with it to the party.
The people who curl up and give up are the ones who vastly lower their chances of getting well -- so you go, girl! You're among friends here.
The question is how to best fight, and how to minimize your aggravation, suffering and cost while getting well as quickly and completely as possible. That's the goal.
Be polite but persistent with the docs and ALWAYS get hard copy of the detailed test results. I think by law you are entitled to receive full copies. Docs who read results as negative are not likely to waste paper and toner on copying what they think are unproductive results ... but another docs down the road may read them differently, and you are the one to be able to carry that data to some future doc. A later request for copies of what's in your old files may well be incomplete. (Put yourself in the shoes of the file clerk at the previous doc's office who really doesn't care about your old records and has a budget for paper and toner and is late to get her nails done anyway.) These are YOUR tests and YOUR future could depend on a future doc seeing those very pieces of paper. Be polite, be persistent. If I am getting grief or a stonewall, I go into the doc's office and stand there and smile at the person behind the counter and ask for copies of ALL test results in my file since X date, and I offer to pay for the copies. So far no one has charged me for the copies. They just don't want hassle and don't really care if I get what I am entitled to. It's human nature on their part. You are more important than that.
Then going forward, never leave a doc's office without getting complete copies of today's tests. Some doc's offices always hand them over, some don't. Be polite, be firm, even lie and say "I have an uncle who is a doctor and he told me he would look at the tests but I have to get copies of them, and he's very stubborn" -- then smile and stand there until they fork over the copies. Not next week or next visit. You will never know what is in your file that they didn't copy. Twice is better than not at all. Keep them all in a binder in date order. Never give your binder to any one (any future doc) except to copy and return to you THAT day. End of lecture. But you get the point.
The tests, no matter how inaccurate, can be useful in the hands of a future doc who knows how to read them in conjunction with your symptoms and history. Repeat: get copies of ALL of them, in full, not just the summary page.
Don't assume the doc will call. Docs are human and busy. You are responsible for your health. Do it. Follow up.
Keep ALL lab work, even the negative ones. They are useful too. I also keep copies of the lab orders before going to the lab. Full set of everything. Am I paranoid? Yes, but I'm entitled.
Herbs can be useful. Herbs are Mother Nature's pharmaceuticals. Don't assume they are all useless. Herbs and factory meds are ALL just chemicals, and sometimes herbs are better. Pharmaceuticals are imperfect too. If you know any chemists or science majors, how perfect are they as people? NOT.
Call the doc's office once a week until you get or are mailed the test results. Be proactive. No excuses. This is YOUR health. No one will care as much as you do.
I am ranting at you here, because I want you to yank up your big girl panties and take charge. You have to do this, esp. when it comes to Lyme. I went through 20 docs before I got a diagnosis of Lyme and babesia, bec. I knew I was sick, and no one had any answers. You must do this, or you have given up and let indifference rule your life.
You are not indifferent, or you would not be posting here.
Big girl panties. Yank. Go for it! You can do it, and you want to, or you wouldn't be posting here.
I actually kind of thought the computer might allow that word since it is an animal, ha.. guess I was wrong. Anyway, I'm glad your not offended but instead very helpful. He did actually hand over my labs upon request without a second thought! I know how they do, something can be on the border but they're still normal. Like my CO2 ct was boarder low. Wonder how that would change with a little bit of motivation. I get outta breath very easy and I've never smoked in my life. I'm absolutely fine when sitting! I had one lab that I ordered myself with no doctor involvement and another one through this doctor. Gotta love computers! I was going to compare them but they were from two totally different testing facilities in totally different units with different reference ranges. Hopefully I can get a copy of my CT scan, but IDK about that one. I'm a huge social phobic, I do much better writing my life history than trying to explain it.
I wouldn't have the strength at all if it wasn't for my friend Addy (adderall). I wish I didn't have to rely on it but I do for now. My kids rely on me and I can't care for them or myself without it if I can't wake up. Only people that have been through the fatigue can truly understand. Sometimes I'm still afraid to go to bed, because occasionally I'll wake up 20 hours later. My kids are usually pretty good at waking me up so I can take it. They are the ones I'm fighting for!
If there was ONE inexpensive herb that was known to be effective, I might stick with it. If I didn't have to drink or eat something sickening because I will end up vomiting it up anyways.
Did you get your diagnoses from any special doctor? What testing gave you the answers? I was going to request a CD57 + NK but IDK. I don't want anything else to prove me wrong on my diagnoses as I've always been so healthy. I can't remember ever having the flu, or even a fever. I could be sick as a dog and not have a fever- ever! My temp is always good, my bp is always good, labs are good too. I wouldn't be surprised if I end up in the psych ward. I do have minor psychiatric issues but I'm starting to think that Lyme is the culprit. I do my best to keep a low profile of those issues though, even during my own investigations.
I definitely suspect Chlamydia Pneumonia for sure but there are most likely other co-infections involved as well.
WOW! 20 years! Kinda makes me more considerate of my original thought of self treatment.
Yeah, I did see some LLMD's that except medicare. I have medicaid, for being exceptionally poor. I wish I could have got further in my life, but it is what it is I guess. I just happened to be young when I began to have issues that left me unable to work. I just don't know where to draw the line between Lyme associated issues and normal issues that would have occurred anyways.
There are too many moving parts in Lyme and its co-infections to try to diagnose and treat yourself. You gotta have a knowledgeable doc.
Also, not all labs are created equal. It really does matter which lab the tests are done at.
Since money is an issue (not like it's not an issue for most of us), having a doc who can guide your testing and treatment will, in the long run, be cheaper, not to mention almost certainly faster and more effective.
You might be able to find a doc who will give you a reduced rate or let you pay over time, or borrow from family. Lyme is not an occasion to let pride get in the way. Some LLMDs may take medicaid, dunno.
Motivation won't change your test results, CO2 or otherwise. Lyme is a systemic illness, affects a whole lot of stuff, not just one system or area of the body, messes with the endocrine system big time too. Also the coinfections like babesia, bartonella, ehrlichia etc. have their own tricks and symptoms and often need separate treatment, so there is no magic bullet for all of this.
Borrow from your family if you have to, ask the doc's office if you can pay over time, ask if they will give you a break and accept whatever ins you do have -- whatever you have to do to get treated. Some people who can't swing any of those approaches go strictly herbal, and it may help, dunno, depends on a whole lot of interconnected aspects that are not obvious. But first you need a diagnosis.
Lyme is not a do-it-yourself project. Sad, but true. Sorry to be harsh, but it's how it looks from over here.
You mentioned wishing there was one herb that would be effective. Lyme doesn't work that way, and about half the time, there are other diseases carried by the same ticks, and those need separate diagnosis and treatment. Different tests, different meds. No one-shot wonders. No short cuts.
You can go to ILADS [dot] org and read Dr Burrascano's treatment guidelines, a rambling mass of stuff that has grown over time as knowledge about Lyme+ has increased. It will give you a sense of the complexity of the issue, and help you chart out things as you go forward, if you're up for it.
Lyme is still a mystery in many ways, both its nature and its treatment, and it's complicated by the confusion in the medical community. ILADS is most on track, and unfortunately infectious disease (ID) docs and rheumatologists are often the most close-minded. So don't struggle trying to find the one true answer, diagnosis and treatment. There ain't one.
Sorry to be a downer, but better to deal with the truth than wander around thinking you just haven't found the one-sentence answer and the two-week cure.
Deep breath. We've all been where you are, in one way or another, and you sound like your spirit is strong -- so hang on, and plow ahead. Don't give the bugz the satisfaction of seeing you give up. Hoorah!
I sort of realized all of this just by searching around. Normally I'd just jump gun at my own treatment regimen.
There is absolutely no one in my family that is going to lend out any money for any reason. I wouldn't even dare to ask! I don't have friends either! Everybody that I have ever met is out for themselves. And I can only be nice to people for so long before I turn my back to them, including family. But it's okay, less drama and less people to explain myself to. I can't imagine a doctor accepting payments nowadays either but I could be wrong. Medicaid is accepted by most doctors, just not LL ones apparently. I'll have to call around some more. Maybe a neurologist. Have any experience in that area?
mojogal, I've been on disability for years. I just didn't really get the chance to pay enough into it through working, so it isn't very much. I always figured medicaid is better because it doesn't cost anything and it has a wider coverage area including dental. They were going to put me on medicare and take the money outta my little check, but I was quick to deny it. It just didn't sound right! It sounded like an expensive mess!
Oh, I see. You are right, Medicare doesn't pay dental and the money comes out of my check. In the world of LLMD some, do take Medicare not Medicaid.
Maybe somehow you can find a regular doctor to give you treatment, long term antibiotics?
I am so sorry about your predicament! It is your circumstances that anger me the most about the powers-that-be that deny so much about Lyme and leave people untreated and disabled.
There are two herbals that in combination have shown effectiveness against Lyme. They are Samento and Banderol. Samento is a name brand that is rather expensive. It is a form of Cat's Claw extract. I read an article about someone who examined both regular Cat's Claw and Samento and concluded that you just need more of the regular Cat's Claw to equal the effectiveness of the Samento. I bought a cheaper brand of Cat's Claw, followed the label, and it did help. It's the first herbal medicine I ever took where I noticed a minor herxheimer reaction. That's how I knew it was helping. These herbs won't cure a long term infection, but they can help you feel better and more functional.
If you're looking for a test result to help you get treatment, you could try Lyme TAP. They provide assistance for Lyme tests to people who genuinely need help. You would certainly qualify for that. A Western Blot test at IGeneX is your best hope. They do a more advanced Western Blot than other labs, and it's the most likely test to show Lyme antibodies, even if it isn't "officially" positive.
It's possible you haven't heard back from your doc yet because the ELISA was positive, in which case they should be running the Western Blot. The WB usually takes between 10 days to 2 weeks to run. Where I live, I can call the lab directly and ask if testing is complete. They will mail me the results if they have already been delivered to the doctor, or I can pick up a copy at the lab. Sometimes that's easier for me than waiting for the doctor's office. Of course it's possible he only ordered the ELISA, and not the two-tier protocol, in which case, the ELISA results should have been done in about 3 days.
I seen how some LLMD's as well as IGeneX bill medicare but not medicaid. I didn't really understand why that is but I'm sure there is a reason. Medicare is actually the only insurance IGeneX will bill. Otherwise they expect the entire amount upfront. I did actually check with IGeneX and Lyme TAP. And as you could imagine, IGeneX testing is rather expensive. Lyme TAP can pay up to 75% of the testing if approved and I'm certainly under their income guidelines. Applying for prepayment is just a much longer process than applying for reimbursement, which is outta my range. I wonder if IGenex can bill the doctors office, which then bills medicaid for the cost. It'd be much quicker. I have no idea how all that billing works but I have the forms and it looks like it may be an option. IDK. Anyway I know he would want the ELISA results back first.
Thanks Ricobord! I have seen cats claw mentioned on various forums, I'll have to try that. It's interesting you mention the ELISA being done in 3 days. It's actually been 10 days! I called the office yesterday and the results weren't back yet. I was told that the're lab probably had to send it to another lab. I just figured they're lab didn't do that type of testing. I'm expecting it to come back negative, as everything always does. He does want to talk to me "in person" about my ct scan though. That sounds interesting! I look awful, don't feel good, and I have an awful pain along my jugular vein region that kept me up all night. It kinda came out of nowhere. All around the back of my ear all the way down to my shoulder and up the side of my neck into my jaw and teeth. I'm unsure of the source. I have a wisdom tooth I need to have surgically removed as well as an infection in my teeth so maybe that's the source.
Mojogal just to compare notes can I ask what effect of Lyme and co-infections left you disabled? I'm still struggling to figure out how long I've been infected and where it actually began.
I think it'd be tough to find a regular physician around where I live that would be open minded to long term antibiotics. I'll just have to tell them. Just like I have to tell them my suspicions and what test to order. I hate having to do that but if I want it done right I'll just have to.
At the time I went on disability I was unable to walk very well, had muscle strength issues, vision issues was full of anxiety and horribly fatigued.
They back dated my disability several years from the time I stopped working so that was a nice surprise to get all that back pay from disability. At that time I hadn't seen an LLMD so my regular doctors said I had chronic fatigue mixed with these neuro problems.
So was it slowly progressive for any of you? Or was it a somewhat rapid progression?
Beginning with anxiety and fatigue, I was declining at an extremely slow rate that I didn't even notice at the time. I was also suffering from painful adult onset facial acne, which could have caused the anxiety to begin with. IDK if adult acne could be related to Lyme. If not, then it's possible that the Lyme came later than originally thought but the fatigue was a very slow progression. It wasn't till recently that I began having issues with my balance, muscle strength, vision, and bone and joint issues, brain, and such.
Just an update: I just got back from the doc. I have no idea why he wanted to talk to me "in person" about my ct scan, they were just calcified cyst. As for all of my other issues, I'm delusional! Yes!! I'm so relived I don't have Lyme after all, because the ELISA was normal as I expected.
Well, that was completely unnecessary stress!! Now IDK if I should spend every last dime and strength I have fighting? Or just relax with my friend Addy, get some cats claw, and let things go?
A negative ELISA doesn't mean much. It is notorious for missing late stage Lyme cases. I don't even think they ever tested it's reliability on late stage cases. Some of the Lyme Disease committee members who voted to require it as a screening test hold patents on the ELISA and make money from its usage. That's one reason the Connecticut Attorney General began an anti-trust investigation into the IDSA back around '06.
A Western Blot at IGeneX is your best bet for finding signs of Lyme. In my case, the result convinced my regular doctor that I did indeed have Lyme, even though my earlier screening test was negative. It sounds like you've done your homework. Good for you! Keep digging until you find a way that works for you.
If you're going to take Cat's claw, I encourage you to take Banderol, too. Two medications is usually more effective than just one. Lyme is a slippery and wily little bacteria that adapts or hides or tries to escape from hostile environments. It doesn't give up easily.
How did you get your regular doctor to test through IGeneX? The doctor I went to completely believes in initial negative test results even though I told him it was extremely inaccurate.. I have the material for the IGenex test. I just don't know where to go with it. The cost would certainly be an issue too.
I'm thinking about ordering my own CD57. I thought maybe it might give me a bit of a lead without making myself seem even more delusional by more negative test results. The only reason I went to the doctor in the first place is because my symptoms fit a number of other diagnoses such as Hashimotos and Myalgic Encephalomyelitis. So I'm also considering a Hashimotos panel to rule that out, but IDK all this testing isn't cheap. Especially when insurance would pay for it through a doctor. But when I requested for specific testing at this particular doctor, he wouldn't even consider it. I really didn't think it would be a big deal but I guess it is.
Anyone have any experience with the CD57? The problem is, I'm sure it would probably be low with Hashimotos AND Myalgic Encephalomyelitis, in addition to Lyme and a wide range of other ailments too.
Have you considered finding a new family practitioner? Sometimes a new doctor is willing to order some tests for a new patient. You could tell the new doc that your last doctor didn't have any answers for you, and you'd like another opinion, a fresh look.
In many states, insurance companies (and this is probably true for Medicare/Medicaid, too) are required to cover tests and treatment that the doctor believes is necessary. Many doctors don't want the scrutiny that can come with ordering tests they can't honestly say they thought were necessary. (Never mind that they'll order a whole bunch of tests for you when they don't know what's wrong. They just won't order a Lyme test when they aren't convinced you have it. It's part of the ridiculous bias against Lyme Disease courtesy of the IDSA and the CDC. The CDC actually says on its website that doctors should not order a Western Blot unless the ELISA is positive.)
My doctor signed my IGeneX order form when I went in to see her in terrible pain. She was shocked at how bad I looked and was very concerned. I gave her the brief story of my sojourn through the pulmonologist, allergist, ENT, and neurologist while I deteriorated quickly. I told her none of them had answers for me and I was sure I had Lyme Disease, even though I tested negative on a screening test. I handed her the form and said I wanted to get tested at a specialty lab and I didn't feel the need to get insurance approval because I didn't have time. I was desperate.
She hesitated saying she thought my insurance should pay for it. I said I didn't care anymore and that perhaps they'd reimburse me for some of it later. (They did, about 2/3 of it.) She signed it right then, I think in part because she didn't have to justify it to my insurance company, but mostly because I was such a mess. I had a history with her going back more than 10 years. She knew I was desperately ill.
I have not done a CD57. While most long term Lyme patients will show low on it, most doctors have never heard of it and it won't mean anything to them. The CDC does not even accept that Lyme suppresses it. If you want proof of Lyme, an IGeneX western blot is probably your best bet.
I've heard that antibiotics kill the spirochetes in the blood first. As the number of spirochetes in the blood drops, the immune system "sees" fewer of them and reduces antibody production. This also happens over time even without the antibiotics as the spirochetes move into tissues, joints, organs, and the nervous system. I've read that you're more likely to test false negative if you've had Lyme a year or more.
I don't think there's an absolute answer to your question, because a short term course of antibiotics can actually help trigger more antibody production as dead spirochetes hit the blood stream. This scenario actually increases antibody production in the immediate term. This is called an antibiotic challenge, done before a Western Blot test, which tries to provoke enough antibodies to show up on the test.
Insufficient courses of antibiotics can leave the tougher-to-kill bugs behind. The spirochetes can hide their surface proteins, which is what the antibodies look for. They curl up into ring forms like a hedgehog curls up in a ball for protection. They also form biofilms to hide in.
In my case, I took insufficient antibiotics when I first got infected. After a week of abx, I got better. Then, I had a relapsing/remitting cycle for nearly 5 years. Once or twice a year I would have "attacks" of severe fatigue, malaise, headache, and loss of appetite. They'd last 1-3 weeks and then go away. The little buggers would go dormant for up to a year! I thought they were relapses of a bad case of mono (epstein barr) from years earlier.
So who knows what effect past courses of antibiotics have had on you. They could certainly interfere with antibody production. Also, Lyme itself can be immunosuppressive. That was the case with me. Twelve to eighteen months ago, I had no allergies, despite a life long history. Blood tests even showed I had no allergies anymore. A general IgM/IgG count showed my immune system was at the low end of "normal." I was really sick with Lyme, Bartonella, and Babesia at that time. My immune system wasn't putting up much of a fight.
This spring, now that Bartonella is gone and Lyme is nearly gone, I am definitely suffering with allergies. Yes, they're back. I am convinced it's because my immune system was suppressed last spring. This year, my immune system is back to overreacting to certain pollens, which is normal for me.
The only doctors familiar with this nightmarish complexity of Lyme are experienced LLMDs. It's rare to find a doctor who isn't clueless about the testing. They trust that the microbiologists who designed the tests and the interpretation know what they're doing. In the case of Lyme, this is a tragically wrong assumption.
Thanks Ricobord! You people are awesome!! I'll have to start asking questions in this community more often! Hopefully ya'll don't mind how I go on and on.... I'm on a mission....
I'm not even sure if the antibiotics I took would even kill Lyme bacteria, who knows.
I know what I should do but giving the fact that I seriously cannot afford an LLMD and regular Drs are clueless about the treatment, even if I did test positive through IGenex, I think I will take control of my own situation. I think I will order my own CD57 as a guide as to where I stand now and during treatment. But do any of you suppose that natural killer suppression would be evident in a wbc ct or lymphocyte ct. Because as you can see below, it's completely fine:
December through LabCorp~
WBC: 9.5 x10E3/uL RR: 4.0-10.5
Lymphs 27 % RR 14-46
absolute 2.6 x10E3/uL RR .7-4.5
March through MedLab in different units~
WBC: 7.2 k/cmm RR: 4.5-10.8
Lymphocytes: 32.4 % RR: 13.0-48.0
absolute: 2.3 K/uL RR: 0.9-5.5
I've never had any bad habits such as smoking, so I'm not at all surprised that everything is coming back normal.
I also just tested completely negative for hashimoto's, so that's good.
Without a doubt Drs look at all these results and automatically assume I'm some sort of foot loop. But I know what it is, it's just the co infections that make it so incredibly complicated.
Nearly all of my labs have been "normal". I had one thryroid number that was a little high once. I also had some abnormal kidney results when my system gets overloaded with medications. Because I had no traditional signs of infection and negative Lyme tests, the ID doc in the hospital I was admitted to for severe pain wouldn't even come see me. The hospitalist let me know that none of them thought I had Lyme or Babesia as I said. "Too unlikely," he snapped.
The only signs of Lyme I ever had was on the Western blot at IGeneX.
This is why doctors who know Lyme well say it's a clinical diagnosis not fully dependent on blood tests.
Have you tried to find a local Lyme support group? They might know of doctors in your area who are more sympathetic to Lyme sufferers and willing to order tests and make a clinical diagnosis.
Yeah I did. And I'm not finding much at all but there is one that I've came across a few times. Their not accepting new patients right now and it's $390 aside from the testing. Coming up with all that money upfront would be a serious issue. I have two kids to feed! I just cannot imagine trying to deal with this blindingly, not knowing what else may be involved.
So was the IGenex Western Blot the only test you had, or the only one you tested positive on? Did you have a panel done or a PCR?
For me, the issue of the expense of treating Lyme has always been a pretty easy cost/benefit analysis: Yes, treatment was expensive. However, by the time I started treatment I was so sick that I was only (just barely) working part-time. Treatment allowed me to return to full time work. I was diagnosed in late 2008, and returned to work full time about a year later. If I consider of the lost wages I would have incurred had I not gotten treated, it would have been far more devastating then the cost of treatment. Without treatment, I would have effectively "retired" at age 30, yet with my treatment I'm not only a working professional but I'm a household breadwinner. So for me, it is pretty simple math that not treating is what would have been the most costly option!
Of course, finances are a very personal matter and I can relate to how overwhelming it is to face both a diagnosis and unexpected costs. I'm not defending the way things are, I'm just weighing in with my experience navigating this difficult disease.
Oh, and I too had almost no laboratory evidence of Lyme and my diagnosis was based mostly on clinical evidence. I treated for over 3 years, and I saw my first real lasting improvement after about 10 months of treating. This illness was life altering and what I went through personally, emotionally, physically, has left a permanent mark, but there really is light at the end of the tunnel.
I did the full Lyme panel at IGeneX. The Western Blot is the only one that was positive (IGeneX positive, but CDC negative). The 2 Lyme specific bands I showed were on the IgM, and they were bands that are ignored by the CDC. If I'd done a Western Blot anywhere else, I would have been told I couldn't have Lyme as it would have been completely negative. The only CDC band I showed was 41 on both IgM and IgG, which lots of people have even without Lyme.
The blood PCR is frequently false negative, so if funds are short, the WB offers the best chance of showing something. If it's negtive or equivocal in a patient who might have Lyme, my doc does an antibiotic challenge. That's where they give a few weeks (not sure exactly how many) of antibiotics and then test again. I think the urine PCR is supposed to be really good at this point, too, as the body is eliminating the dead spirochetes killed off by the abx. The PCR finds bits of Borrelia DNA.
A really open minded doc might be willing to do the antibiotic challenge for you. Such docs are probably few and far between, though. The antibiotic challenge is something ILADS docs understand, but docs who just follow the usual sources of information wouldn't even know what it was. The idea is that by killing off a few spirochetes, the immune system will recognize the dead bugs as foreign and start producing antibodies against them. It works in some people, but not always.
Someone whose immune system is overloaded with toxins & heavy metals or hobbled by malnutrition might be unable to produce much of anything. These patients tend to be the sickest. They need a doc who can work on detoxing and rebuilding the immune system in addition to treating Lyme. You can help yourself along in this regard by ensuring you get good, natural nutrition with minimal saturated fat, sugar, and processed foods. It really does make a difference.
The idea of the immune system producing fewer antibodies over time during a chronic infection is not full embraced and agreed upon in the world of medicine. The "official" position on Lyme says that if you're infected, you'll have enough antibodies to show up on the test.
Dr. James Schaller who has written books on Babesia and Bartonella. One of his articles said that Bartonella is immunosuppressive and if you have Bart, you're more likely to test false negative for Lyme and Babesia, if that is present, too. That certainly is true for me. I tested positive for Bart, IGeneX positive for Lyme, and then negative for Babesia 3 times. Eleven months later, my doc finally figured out I had Babesia by symptoms.
I think Wonko is right about the economics of treatment, but I also understand the issue of needing the money up front This is where you'll have to get creative. Check with ILADS and your state or regional Lyme Disease Association to ask if they know of any docs who take Medicaid who will diagnose Lyme and at least give oral treatment. The goal would be to get you well enough to work again so that you can get coverage or be able to afford more treatment. Think one step at a time so you don't get overwhelmed.
Check with local Lyme support groups (find them online) to ask for suggestions. Do some searching online for help with treatment costs. Consider who you could ask for help.
Since you've probably had it for awhile, it will take awhile to get better, easily more than a year. Progress can be slow, so don't get discouraged. This is a marathon, not a sprint. Rejoice in the little victories. Go for what will help the most. For example, a Western Blot would be more likely to help than a CD57, at least in my non-medically trained opinion. I am just a patient who has read a ton of stuff, but only you can decide the best path for you.
I know I am going on too much, but I just thought I'd ask if your doctor(s) have eliminated some other unusual conditions that Lyme can mimic, such as hemochromatosis, Brucellosis, MS, or Celiac?
Actually, you’re not going on too much at all. Go ahead and write a book! It's all very interesting!! Thanks for the info Ricobord. I've learned more from you than anything I've read.
The one LLMD's office I spoke with mentioned starting antibiotic treatment prior to any testing so I'm assuming the antibiotic challenge is what they would do. It did also seem like IGenex western blot was the only test they ordered initially. They're backed up for months though! But I'll most likely go through with it. I did find a LLMD that takes Medicaid but I'd need a referral and so probably a positive Lyme test. I have no clue what DR might just issue a referral.
No the doctor I went to didn't rule out hardly anything besides Lyme, in his opinion. I really don't think he or any doctor has much time to really dig into a complicated case.
Yes, I have obviously thought about the advantages of treatment. And I honestly cannot imagine being normal although I try. I've officially been "retired" since the age of 24 okay. And even then it was tough! I was having horrible panic attacks all the time for no reason that wouldn't just go away so I could get back to work. I couldn't get along with people I worked with. I was there to work, not make friends and socialize with the supervisors. So I guess I was always an outcast. Is that an aspect of Lyme? IDK. But believe me I don't make much less now than I did when I was working. So in all reality, there really isn't much to gain when you think of it that way. Then when you add insurance to the mix, income really goes down a lot. So I guess it really averages out about the same. That's why I don't like to think of it that way, it's just the negative reality in this particular state. I'm doing this for my kids right now. Then hopefully I can regain enough brain function to return to school and go from there.
Sorry for the delay in response. I've been out of town.
Regarding your question about panic attacks and not getting along with people, those are both known symptoms of Lyme. Anxiety to the point of panic attacks is documented. Even the doctors in the American Psychiatric Association has published articles and had conference talks on this issue.
There's also "Lyme rage", which can come and go. It's an extreme form of the very common irritability that comes along with Lyme. I've definitely had that. My poor husband and daughter bore the brunt of my irritability when I was at my worst. Irritability & anxiety combined are especially effective at driving other people away from us, not to mention reason for doctors to write us off as psych cases.
I didn't realize that I also had a chronic sense of doom for a few months before treatment until Youvegottobekidding mentioned that she had this as well. I didn't quite realize it was a symptom, although I can't remember if it's from Lyme or Bart. For a couple months I was sure my husband was going to die in an accident everytime he went off to work, which involved travel. I didn't want to tell anyone at the time, as I didn't want to be right. I'm relieved now to know it was caused by the infections, and that I'm not actually a paranoid pessimest.
In my case, the anxiety was from Bartonella. My anxiety dropped way down after a few months of meds for Bart. I luckily tested positive for Bartonella Henselae antibodies at IGeneX.
Wow! Isn't that interesting! Everything you've mentioned fits perfectly! The anxiety and paranoia is unbelievable and the irritability and rage usually has a trigger but it's such a relief to know that all of these things may diminish with treatment. Did you have any wild heximer reactions from the treatments?
I could have had this for much longer than I originally suspected. So can an LLMD can tell from the western blot IgM and/or IgG results approximately how long the infection has been present? Or just chronic vs acute infection? I read that kids can be born with it, so that's concerning.
There is one piece of the puzzle that I cannot seem to tie in with anything. And that's these growing nodules on my head. They've been very slowly growing and multiplying over the past 10 years. I was told they were calcified cyst but I can't seem to wrap my mind around growing calcified cyst. I seen the CT and there are quite a few of them. Even though they appear to be superficial, there must be a cause. They've kind of been growing and multiplying with the gradual decline of my health.
Sorry...don't know anything about calcified cysts. But there are so many secondary and tertiary issues that can come up with a long term Lyme infection, it's probably impossible to list them all. Lyme throws multiple symptoms out of whack, and strange things can happen that aren't really considered Lyme symptoms. I think if I were you, I'd cut back on excess calcium for now. You don't want a shortage, but you might not want supplements either.
What I would do is to google "Lyme" and a word or two describing a symptom. When I learned I had a big liver cyst, I googled "Lyme liver" and learned that there is a relationship. It encouraged me in that it didn't exclude Lyme as the cause of my many symptoms, and also that I didn't have a separate liver condition!
I didn't any wild herxheimer reactions until about 9 months into treatment. My doc starts out slow in order to avoid strong herxes. He doesn't think it helps a patient to make them much sicker. I had a strong pain response to my first Bicillin shot about 6 weeks in. It made my rib pain and stomach pain (two of my top few problems) much worse for a couple days. I could barely walk. Then it eased up and I felt ready for the next shot on the 4th day. It almost made me happy to have a reaction as that meant is was working. "Die, bugs, Die!" became my mantra when I hurt.
I had a significant reaction to Clindamycin, an intracellular abx. It made me feel miserable with malaise, severe fatigue, severe brain fog, headache, inability to focus or even do much of anything. It lasted a bit less than a day, but took several days to fully get out of it.
Later, I had a bad herx when I started Malarone for Babesia. The office forgot to tell me to ease into the dose, so I took 3 pills the first night. The next day, it was like someone shut my brain down. I had about five minutes warning of headache and dizzyness, and then I had to abruptly lie down on the floor. I couldn't get up or speak more than a few words for about a half hour. My husband took one look at me and said, "Did you start a new medication?" I spent the rest of the day in bed like a breathless zombie. I had zero doubt that I had Babesia after that. After that, it took me a month to ease up to the 3 pill dose.
Since then, I ease in to every new med I take, including anti-bacterial supplements, whether I am instructed to or not.
I would be careful about easing into ALL meds ... does that are less than lethal to the bacteria gives them a chance to mutate and survive, now immune to the particular antibiotic. I would confirm with the doc how to stage such an approach, or if it is not a good idea, even with significant side effects.
Good point. "Easing in" to me usually means over a few days, not weeks. But it is still a good idea to mention it to the prescribing doc.
When I was first prescribed Malarone, they forgot to tell me to ease in to it. I took the full dose the first night and the next day around noon my brain and body just shut down. I ended up lying on the floor for 1/2 hour before I could get up with help and stumble to bed for the rest of the day. Before that, the docs told me which things needed to be started slowly. But it only took 1 "oops" for me to take ownership of asking that question!
Thanks Ricobord! I've kinda noticed all the secondary possibilities of Lyme just by searching around. If I could only determine the secondary cause of my debilitating fatigue and temporarily fix that then I would be getting much further to Lyme dx and treatment. But it didn't take long to realize that there are so many possibilities and co-possibilities of the fatigue, it's just not possible to make that determination.
I'm deteriorating fast, so sorry if my writing is off or don't make sense. One thing I never wanted to lose is my brain function. I just hope there's enough left to communicate with a doctor or there's going to be some serious issues.
I really don't know where I'm getting calcium from but I must be getting it from somewhere courtesy of my lab values, which revealed me in the upper range. I must be getting plenty of it from cheese, because that's the only real source of calcium I consume. It's not a whole lot though and it's not necessarily on a daily basis either so IDK.
I did google various words concerning 'protruding calvarial cyst' and such years ago but I actually found many possibilities. If I knew for sure what they were, then I may be able to make that connection. I refuse to except that they are calcified cyst. There are so many likewise possibilities, I don't see how they could make that determination just by CT appearance.
You have an interesting history! Which treatment took 9 months to get a herx and how long did that one last? I actually fear herxheimer reactions but at the same time, I'd look forward to it as confirmation that treatment is working - just like you said. I'm the only one my kids have to rely on, so hopefully it's not too rough.
Just to clarify, I had herxes when I started a new medication. My doc rotates them regularly as it creates an ongoing attack against the bugs. When my pace of progress would slow, I'd get a new abx. When I started Biaxin at the 6 months mark, I didn't notice any herx. But when I started Clindamycin at the 9 month mark, I had a significant one.
I did Bicillin shots for the better part of a year, and for the first half, I generally felt a die off in the hours after a shot. After a while, I got to crave the next shot, which is when they upped my dose.
And yes, there are many contributors to fatigue. The disease itself, as well as body chemistry imbalances that result. You can ask your doctor for an anti-fatigue medication. Provigil, nuvigil, and adderall are the most commonly prescribed and they usually help. I've been on low dose provigil for well over a year, and it still helps me. It boosts my heart rate, though, so I had to use it sparingly when my tachycardia was too much. Adderall is cheaper and many insurance companies won't cover provigil/nuvigil unless you have narcolepsy. Adderall is addictive, though. But that's still better than not being functional.
I am sorry you're struggling. I know the feeling! You can help your body by eating as healthy as possible, avoiding chemicals, processed foods, and sugar as much as possible. It really does make a difference. Sugar and saturated fat have both been shown to suppress the immune system.
You actually felt a die off? I wonder what that must be like. Sounds awesome!
I've been taking a fairly large dose of Keflex for a week and I don't think I feel any different, so maybe they're not affected by it IDK.
Yeah, I've been taking Adderall for quite a while. I don't feel like begging a doctor for them though, so mine aren't really cheap. They seem to have lost most of their effectiveness but they do get me outta bed and help with my mental status, so that's better than nothing. I'm not going to increase my dose, regardless. It's tempting but I know how addiction works and I don't want it.
I was able to make an appointment with an LLMD and they can't get me in for 6 MONTHS. I can't even imagine what shape I'd be in by then! I'm on my own with this and I'm already worried about the 1.5 hour drive through the big city.
I look forward to recovery though, regardless of how long it may be. I can't remember ever being normal. The last 10 years kinda got away as I didn't realize I was slowly creeping away. The breaking point was when I went on an extremely low dose course of Isotretinoin and POW!! Everything accelerated. It lowered my immune system, allowing the bacteria to thrive but at least now I know. It was confusing at first because I thought I was experiencing side effects of that medication but I didn't understand why as I was only taking 1/3 of the recommended dose.
Consider lining up a friend or family member to take you into the city when the appointment time comes. Takes the stress off you, and if you're as addled as I was, I was confused a whole lot of the time and had trouble doing even simple things sometimes, never mind an unfamiliar and complex task, topped off with anxiety about seeing the doc. It's a big event, after all.
I wish I had a friend or family member to rely on. I AM quite a bit confused. I get lost in my own city all the time, so I couldn't imagine making it to this doctors office but I'd try. Hopefully I wouldn't be too physically sick if I did arrive. I'm so incredibly sensitive to motion combined with the stress from driving in an unfamiliar territory with high traffic, I can almost count on it but I won't. I'm trying to stay positive! The sickness does get quite intense though. Seeing the doc would probably be another stressor but to a lesser degree than the drive.
I'm new to this site but not to Lyme. I'd promised myself that I would just 'lurk' for a while but your financial plight impells me to suggest this-----(maybe I missed this somewhere, so sorry)
There are patient assistance services for those that can't afford medications. The person still needs a doctor (llmd in the case of Lyme) to sign off on the request.
Not all medications are available but many are. I used Needymeds before Rocephin went generic. The criteria for each drug may be different (whether you can have ins., Medicare, poverty or close to it) so check them out.
Here are the links:
Perhaps, after you find a doctor who will treat you, you may find a use for them. (And may that be soon---- I agree with most of the posters here.)
I'm like you---- healthy as a horse (on lab tests). Sick as a dog in real life. Never had a positive Lyme test from Igenex. But after years and years of treating, bicillin IM kicked me into a few years of remission. Please don't take that as saying that bicillin will help YOU or YOU. :) It might or it might not. More than a decade of this crap has shown me that each person will get better in a different way than the next.
Welcome to MedHelp Lyme -- and thanks for your information about funding. May I suggest you start a new thread with a message something like 'Financial assistance for needy Lyme patients' and re-post your information there?
Otherwise it may not be seen by many, buried at the bottom of this chain.
There is hope!! I have been caring for my daughter, who was diagnosed when she was 16, with Lyme disease by Sierra Integrative in Nevada. (I'm not even going to list all the years of going to doctors, etc., that mis-diagnosed).It was VERY expensive & painful to treat. She gave up on the treatments after getting relatively better. At 23, she had treatments from a Lyme "specialist" doctor, here in CA. The antibiotics left her in horrible, crawling on the floor pain. That was in October of 2011, she had to quit her job & move in with us. I scoured the internet for a month & came up with Boluoke Lumbrokinaise, Biofilum seaweed, Garlic 6000, Sivercillan, a good probiotic, (I'm using Synergy by Designs by Health), Heel Detox & the Byron White Products. She's back home again because she's 25 & lives the party life, that's totally incompatible with Lyme. We are ready to start treatment again. Diet for 8 weeks: vegetables & meat, homemade soup, protein drink (jay robb, egg white), stevia, honey. No fruit, dairy, grains, potatoes, corn, sugar, etc.
I am going to use Pekana instead of Heel this time: It's stronger.
Afterwards, I will try to get her to stay on the Blood Type diet We're all type "O", so it's not too hard.
She went from a pain level of "!0" to a "5" in 3 weeks last time she was here. The Byron White Formulas are amazing. Do your research, check out their websites, read the reviews & blogs & you WILL get success!
The horrible crawling pain you describe sounds like an awful herx. While not everyone herxes, some experience really bad ones. That usually fades with time, so hopefully she didn't write off abx altogether.
I hope your daughter hangs in there with the treatment this time. LLMDs say that you need to keep treating for at least 8 weeks past all symptoms (excepting any permanent damage). Otherwise, the patient usually relapses again. Each time it gets harder to treat. She's a lucky gal that you're there to help her.
Lyme is a rich person's disease. If you don't have money, you're screwed. I have the same predicament. Because I can't work anymore, I have to rely on Medicare and disability. My llmd, who took Medicare for many years, no longer does and now I have to pay him double. I try to extend the time between appointments because I have to travel, too.
Also, I started treatment exactly six years ago and there hasn't been much of a change. But I can't afford to collect and borrow all the money I can and see someone on the east coast because what if I pick the wrong doctor? If I could ever do that, I would only have one chance to get it right because I would have to pay for the appointment, room and board...etc. I already tried this six years ago before my husband lost his job and we had savings. I went to a recommended doctor three states away but he didn't treat it aggressively enough, either.
I have never tested positive on elisa. I haven't tested positive on western blot, but I have positive bands. I pee Lyme spirochetes and my cd57 is 10. I had a large bullseye rash in 1999 that my doctor said looked like Lyme but that I couldn't get it in Michigan so he said it was ringworm. I got sick 3 years later and was misdiagnosed until 2007. I made my own diagnosis too and it turns out I was right. But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either.
and there were quite a few hits for patient groups and other sources of information.
I also am aware that there are some charitable organizations that may help pay for Lyme treatment. One is called LymeTAP ... and the other one I don't remember. Someone posted the names of these orgs here not too long ago, so you might try using the search box up above and search for lymetap, because I'm pretty sure that was in the post I read.
"But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either." Just don't give up!! There are ways. If nothing else, herbal approaches might help.
Yes dreamsnake, that's what I'm saying. It's hard for some people to truly understand. It really is a toss up between feeding my kids what they want and treatment but at the same time, I keep getting bombarded with the importance of healthy eating with this disease. Is it really that important? Because I can't afford it! Especially with treatment! I've already begun a herbal approach and I have to say, I don't know how long I can afford this route either. It gets expensive!! I am so tempted to order my own prescription medicine now that I know what to order, you have no idea. The medications I need are soooooo much cheaper but all this counterfeit talk has got me thinking. I've ordered many medications from this company and they all worked as expected. So IDK. If the medications don't have the appropriate levels and rather just enough to feel the effects, I'd have resistance to deal with. I have an appointment in Oct with an LLMD if I live that long. And luckily she accepts payments. Of course, I worry about my kids too! I hate having to put myself first but I seriously feel like I'm about to croak. They seem fine and healthy but there are a few signs in them as well. I really don't know how I would afford all three of us! They don't have a father in their life and I don't have a husband or a wife.
As far as I know LymeTap will help with some of the Lyme associated lab testing but nothing more. Any little bit helps though!
Thanks for the advice cave 76!
I just found out I have an astigmatism, could that be from Lyme? I've always had perfect eyesight until about 8 months ago and it's been declining ever since about the same time my health began its rapid decline.
As of now I'm taking Interface Plus; Allmax prepro but probably not for long as it's expensive; Nattokinase; MSM; Prescription Bactrim I've had and the amoxicillin I got from the dentist. I'm debating Lactoferrin, Berberine, and CoQ10. I'm aiming more towards biofilm busters at this point. Otherwise nothing else will take effect. This stuff is all over my hair and skin. I can see under magnification and it's thick! I can't imagine what my insides must be like. Hopefully I can get the dosage right. The more I take the quicker I'll have to buy more but I want to take enough to be effective without getting real sick either. I'll fit Cats claw in after I rid some of this biofilm stuff. I have other ailments other than the typical Lyme/co infections to deal with too.
Lyme can cause blurry spots in vision that mimic astigmatism. I thought my astigmatism was getting worse, and I got new lenses. Now that I'm well into treatment, I need to get new lenses again, probably the same prescription I had before.
The downside of getting new lenses is that your vision can change fairly quickly with Lyme. The author of "Cure Known" said she didn't want the cost of frequent lens changes and so she accumulated a collection of reading glasses of various strengths and used whichever one helped the most at any given time. I've seen reading glasses at a Dollar store so you can get them really cheap, if they help. If you need new lenses for distance, especially for driving, then definitely get those. You want to be safe.
I also had light sensitivity and three different kinds of floaters, so keep an eye out for them, too. (He He. Pun intended.)
That's what I was kinda thinking Ricobord. I was hoping it may improve with treatment but at the same time they seemed expensive at the optic place and insurance will only pay for the cheapest ones once a year. I'll have to look around. Right now my visions been on a steady decline and I was seriously worried about going blind. I'm already night blind. Not so much light sensitive though. I have 100 watt light bulbs blaring in the house. Otherwise I can hardly see. I have floaters too and only sometimes double vision.
Where can I find the thread? I'm still sorta new here.
"Here's something to consider if a person has double vision (whether caused by Lyme or not)
When I saw a neuro-opthamologist in NM he rx'd new glasses with prisms in one lens. For some reason that didn't work for me but I'm sure it must for some.
But then he put a Fresnel lens over my regular eyeglasses (with a change in the rx) and it worked!!! Double vision gone while wearing glasses----and for driving it's REALLY important. (grin)
They are thin press-on plastic Fresnel lenses that can be cut to fit your eyeglasses (usually done to see if a more expensive prism will work.) Have you seen those 'full sheet magnifiers' offered in some catalogs? Same thing, only thinner and better.
Although some might fret over the fact that they are (minimally) visible I don't mind them at all and I've never had anyone say---- what the heck is that!! (Just read that some one thought that Hilary Clinton is wearing a Fresnel lens)
They're inexpensive and any good opthamologist will fit you with them. And you don't even have to mention Lyme. (grin)"
I've not had a chance to get back to this forum til now because I've been doing research day & nite for weeks. Yes, "the crawling on the floor" from pain was definitely from herxing. It is so irresponsible of a reputable lyme doctor to give shots & then send a single young woman home, where she's by herself, to suffer in such horrendous pain, for weeks! (of course she asked for pain meds...nothing). My daughter has a high tolerance for pain & is a high achiever. When"positive thinking" tries to think away the pain, it becomes unrealistic. And when she let us, her parents know this, a year later, we were mortified. So, now...contrary to what is normally said or done, I take care of her treatment myself, with her approval, of course).
Remember, we went to Sierra Integrative in 2005 & spent a fortune on tests. I don't have that money now. Dr. Forrest of "forresthealth.com" is close to us in CA, & I consult with him & order through him. I cannot afford, either, to take all of these tests, but I have the proof of what she tested with in the past.
This may be objectionable to some, but I made up my own written test. The websites I have been on that discuss the different symptoms of the different co-diseases were my impetus. I had my daughter rate her pain levels on a scale of 0-5 (5 being horrible pain). I typed out a form where she could check off her pain levels from the top of her head to the bottoms of her feet. I included emotions, fears, nightmares, OCD, ADD, (not ADHD she wrote), suicidal thoughts, amount of time she could concentrate, anything i could find on Dr. Wayne Anderson's website (and others) that described all the symptoms that pertained to lyme & the nasty co-infections. She wrote down more than what I had. My shock was when she divided the check list in half: Say it was "4/5" for headaches. She clarified that the pain was a 4 some of the time, but a 5 maybe 3 times a week, & it lasted for an hour. By time I got done reading her list, I was ..... sick.
BUT! After all my studying of websites & blogs & forums & reviews, I was able to make the connection of serious heavy metal toxins. She doesn't want to take 20 different pills a day, so we've decided to start with the obvious,heavy metals & as she improves, attack the Bartonella with A-BART from Byron White Formulas etc. I am VERY impressed with Biofilam's website & reviews of it's brown seaweed, "Biofilam". Getting rid of heavy metals is dicey, because breaking up the biofilms causes some of the metals to be reabsorbed BACK into your system, as if you were getting it for the first time! THAT'S a scary thought! But "Biofilam" info & reviews state that the seaweed surrounds the poisons & take it out of your body with NO side effects. I am excited to try this product & will let you know how she progresses. I am so sad to see how hard a time each one of you has in your endeavors to get some answers to this disease.
Wow I'm sorry your daugher had to go through that! She's lucky to have you there for her though. I've been scared of herxing. I haven't experienced it yet and I'm sure everyone herxes differently, so I'm really not sure what to expect. The InterFase Plus that I'm taking has EDTA in it. IDK how effective that may be at binding the metals but I haven't experienced any adverse effects from it. I'm not sure if I'm taking enough. The recommended dose is 2~8 a day spread out between meals and I'm taking 3 and sometimes 6. I figure there's no sense maxing out on it. I have issues with taking pills too. I'm considering working my way up on the dosage though. Thanks for the advice! Keep me updated on that!
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