Aa
Being broke must be a death sentance
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?
Thanks!
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
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.
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.
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?
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?
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.
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.
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?
Thanks :)
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?
Thanks :)
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.
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.
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.
<3
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.
<3
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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.