Aa
newly diagnosed, question
Hi everyone and thank you for this forum.
I was recently diagnosed through IgeneX (IgM/IgG both positive and postitive IgG titer for E. Chaffeensis - HME). My G suspects Bartonella as well because of my history. I had positive ELISAs in the past and one band on traditional western blots. Like many of you, I've been sick for a long time.
I've been on high daily doses of steroids for the past 9 months and will need to be on them for life. I'm concerned about what this means for the Lyme. I will continue reading through other's posts, but I do have some basic questions. Here goes:
I will need IV antibiotics. The only LLMD who will see me soon only prescribes Rocephin IV. I have a history of pancreatitis and gall bladder attacks, so I'm worried about the Rocephin. My GP thinks I need a combination of 2 different antibiotics, one of them being Doxy. But he won't do IV. I'm confused.
People probably ask this all the time, but how in the world are we supposed to pay for all of this? My insurance will cover 28 days of IV abx at most. I'll need to be on them for a long time. Are there assistance programs out there, or ways to get meds cheaper? I'm at a loss.
Would really appreciate some words of wisdom! Thank you in advance for your help.
Leigh
I was recently diagnosed through IgeneX (IgM/IgG both positive and postitive IgG titer for E. Chaffeensis - HME). My G suspects Bartonella as well because of my history. I had positive ELISAs in the past and one band on traditional western blots. Like many of you, I've been sick for a long time.
I've been on high daily doses of steroids for the past 9 months and will need to be on them for life. I'm concerned about what this means for the Lyme. I will continue reading through other's posts, but I do have some basic questions. Here goes:
I will need IV antibiotics. The only LLMD who will see me soon only prescribes Rocephin IV. I have a history of pancreatitis and gall bladder attacks, so I'm worried about the Rocephin. My GP thinks I need a combination of 2 different antibiotics, one of them being Doxy. But he won't do IV. I'm confused.
People probably ask this all the time, but how in the world are we supposed to pay for all of this? My insurance will cover 28 days of IV abx at most. I'll need to be on them for a long time. Are there assistance programs out there, or ways to get meds cheaper? I'm at a loss.
Would really appreciate some words of wisdom! Thank you in advance for your help.
Leigh
Hi again and thank you both for your thoughts on this. I want to be open-minded about my treatment. I don't want to get stuck on the ILADS guidelines, but I don't want to waste any time getting better, either. Hard to know what's best. The descrepancies regarding which meds to use, etc, are reasonable; to me it's the length of treatment that really matters. What suprised me most about yesterday's appointment was the doc's 6-week IV abx plan. This is a fraction of what most LLMDs would prescribe (from what I understand) for a patient like me.
Wonko, the band I tested positive for on traditional WBs was 41. My ELISAs were positive. On the Igenex IgM I tested positive for 18, 23-25, 31, 34, 39, 41, and 83-93 and on the IgG I tested positive for 39 and 41. I had a positive IgG titer for HME. The Bartonella dx has been a clinical one - I used to work with animals and was scratched/bitten by several stray cats in a short amount of time...ended up with lymphadenopathy and cycical high fevers, rashes, muscle pain, and eosinophilia.
All of the other testing I mentioned resulted in the diagnoses I have now, which are part of the Polyglandular Syndrome. There are too many tests to list here, but if you really want to know, I can tell you. :)
My symptoms since the beginning have included high cyclical fevers, rashes, muscle pain, arthritis, orthostatic hypotenstion, arrhythmias, parasthesias and neuralgias, anisocoria/exophoria, gastroparesis, urinary problems, GI bleeding, malabsorption, pancreatitis, anemias and vitamin deficiencies, hyperpigmentation, weight loss, headaches, tinnitus, photosensitivity, allergic reactions, bone pain, flushing, blah blah blah. The endocrine stuff explains some but not all of my ongoing symptoms, and the fact that they always flare together is an indication (to me, at least) that the Lyme is the real culprit. The only way I can come close to telling what's what is by balancing my meds and seeing which feelings are left over!
Every single doc I've seen over the last few years has asked me about Lyme based on my history of symptoms, lifestyle (used to be an avid hiker/trail marathoner/backpacker, and profession (veterinary technician working primarily with stray animals). Just never had something to "hang their hats on" until now.
By the time Addison's is diagnosed, 90% of the adrenal glands have been destroyed. So the body's cortisol and aldosterone need to be replaced (hence the steroids) in order to stay alive. Technically a "physiologic" -as opposed to "treatment"- dose of steroids should not cause immunosuppression, since it is truly just replacing what's missing. The major flaw in my treatment over the last 9 months was due to the fact that each time I felt bad, my docs assumed the Addison's was poorly controlled and raised my steroid dose. Once a person is on a high dose for an extended period of time, tapering becomes a real issue - so I've basically been "stuck" on supraphysiologic amounts for a while. Like you said, bad for the Lyme (and me).
I think this accounts for the positive IgM - the steroids essentially unmasked the old infection. My total IgG in my blood is low, so it would be impossible for me to respond appropriately on a IgG Western Blot (or any other IgG test for that matter). Kind of like the way a person can't test positive for Celiac without enough total IgA, even if he/she has the disease.
I've tapered my dose over the last few months as much as I can, but according to the LLMD and my GP will need to increase again during Lyme treatment due to the physiologic stress of high-dose antibiotics. Whoopie.
Still curious about others' experience with different antibiotic combinations, particularly Rocephin, Levaquin, and Doxy.
Thank you again for taking the time to write. I hope I can be of help to all of you in the same way at some point.
Leigh
Wonko, the band I tested positive for on traditional WBs was 41. My ELISAs were positive. On the Igenex IgM I tested positive for 18, 23-25, 31, 34, 39, 41, and 83-93 and on the IgG I tested positive for 39 and 41. I had a positive IgG titer for HME. The Bartonella dx has been a clinical one - I used to work with animals and was scratched/bitten by several stray cats in a short amount of time...ended up with lymphadenopathy and cycical high fevers, rashes, muscle pain, and eosinophilia.
All of the other testing I mentioned resulted in the diagnoses I have now, which are part of the Polyglandular Syndrome. There are too many tests to list here, but if you really want to know, I can tell you. :)
My symptoms since the beginning have included high cyclical fevers, rashes, muscle pain, arthritis, orthostatic hypotenstion, arrhythmias, parasthesias and neuralgias, anisocoria/exophoria, gastroparesis, urinary problems, GI bleeding, malabsorption, pancreatitis, anemias and vitamin deficiencies, hyperpigmentation, weight loss, headaches, tinnitus, photosensitivity, allergic reactions, bone pain, flushing, blah blah blah. The endocrine stuff explains some but not all of my ongoing symptoms, and the fact that they always flare together is an indication (to me, at least) that the Lyme is the real culprit. The only way I can come close to telling what's what is by balancing my meds and seeing which feelings are left over!
Every single doc I've seen over the last few years has asked me about Lyme based on my history of symptoms, lifestyle (used to be an avid hiker/trail marathoner/backpacker, and profession (veterinary technician working primarily with stray animals). Just never had something to "hang their hats on" until now.
By the time Addison's is diagnosed, 90% of the adrenal glands have been destroyed. So the body's cortisol and aldosterone need to be replaced (hence the steroids) in order to stay alive. Technically a "physiologic" -as opposed to "treatment"- dose of steroids should not cause immunosuppression, since it is truly just replacing what's missing. The major flaw in my treatment over the last 9 months was due to the fact that each time I felt bad, my docs assumed the Addison's was poorly controlled and raised my steroid dose. Once a person is on a high dose for an extended period of time, tapering becomes a real issue - so I've basically been "stuck" on supraphysiologic amounts for a while. Like you said, bad for the Lyme (and me).
I think this accounts for the positive IgM - the steroids essentially unmasked the old infection. My total IgG in my blood is low, so it would be impossible for me to respond appropriately on a IgG Western Blot (or any other IgG test for that matter). Kind of like the way a person can't test positive for Celiac without enough total IgA, even if he/she has the disease.
I've tapered my dose over the last few months as much as I can, but according to the LLMD and my GP will need to increase again during Lyme treatment due to the physiologic stress of high-dose antibiotics. Whoopie.
Still curious about others' experience with different antibiotic combinations, particularly Rocephin, Levaquin, and Doxy.
Thank you again for taking the time to write. I hope I can be of help to all of you in the same way at some point.
Leigh
I don't have that much to add to this already detailed discussion, but I do have a comment on treatment options and opinions.
Given that there is so little good science on the testing for and definition of chronic Lyme, not to mention complicating co-infections, there is no singly Holy Grail for treatment.
Most LLMD's have developed their own protocol (or adapted an existing one) based upon their clinical experience. It's that experience and insight for which we seek them out, since of course most mainstream docs will only do 3 weeks of doxy.
So the details of your treatment will likely depend on your doctor. You are smart to have done so much research on which meds may be appropriate in your case, but again there is no single forumla that works well for everyone. In my opinion, a good LLMD will be willing to tailor your treatment depending on your initial reaction. I've had to change meds (all orals, no IV) and made dosage adjustments all along the way, and thankfully my LLMD has been willing to do so. Otherwise, I would not have gotten so much better.
Your steroid situation is alarming. Even a short course of steroids can worsen a case of Lyme, yet you state you need to stay on them. Has your doctor commented on how this will affect your treatment? Steroids suppress the immune system, so even if you take high doses of abx, it sounds like an uphill battle.
Also, while I don't think Lyme testing is very good, and do believe that one can have Lyme with negative tests, I was wondering what other eveidence you have of Lyme outside of the Igenex band 41? You mention that you were extensively tested for other diseases and saw a lot of docs, and that your history fits Lyme, but I'm just curious what else went into your dx.
Best of luck.
Given that there is so little good science on the testing for and definition of chronic Lyme, not to mention complicating co-infections, there is no singly Holy Grail for treatment.
Most LLMD's have developed their own protocol (or adapted an existing one) based upon their clinical experience. It's that experience and insight for which we seek them out, since of course most mainstream docs will only do 3 weeks of doxy.
So the details of your treatment will likely depend on your doctor. You are smart to have done so much research on which meds may be appropriate in your case, but again there is no single forumla that works well for everyone. In my opinion, a good LLMD will be willing to tailor your treatment depending on your initial reaction. I've had to change meds (all orals, no IV) and made dosage adjustments all along the way, and thankfully my LLMD has been willing to do so. Otherwise, I would not have gotten so much better.
Your steroid situation is alarming. Even a short course of steroids can worsen a case of Lyme, yet you state you need to stay on them. Has your doctor commented on how this will affect your treatment? Steroids suppress the immune system, so even if you take high doses of abx, it sounds like an uphill battle.
Also, while I don't think Lyme testing is very good, and do believe that one can have Lyme with negative tests, I was wondering what other eveidence you have of Lyme outside of the Igenex band 41? You mention that you were extensively tested for other diseases and saw a lot of docs, and that your history fits Lyme, but I'm just curious what else went into your dx.
Best of luck.
Greetings. I must say, you are one of the best prepared Lyme patients I've encountered -- you cover all the bases and press ahead on all fronts, and I think it's your best approach. I try to do that but it's hard to keep all in perspective and with appropriate direction.
I had Lyme and Babesiosis initially, and my LLMD didn't do Levaquin or Rocephin for those. Not until now (with a new dx of Anaplasmosis) has doxy ever been suggested, so I have no data to offer you on any of those meds. I have not started the doxy due to my yeast issues. I am in other words dragging my feet. I think I'm just tired of it all.
The ILADS guidelines are to my knowledge just suggestions and LLMDs use their own tweaks, so I'm not surprised you're not finding them adhered to. The beef nonILADS MDs have with ILADS is that it is not 'evidence-based medicine.' No drug trials etc. I see why they think that, and why the broadstroke ILADS approach makes the IDSA guys crazy....but the IDSA guys are sitting on their thumbs murmuring the same mantras over and over without looking at the misery around them. All in all, I'll take a thinking ILADS MD over a non-thinking IDSA MD anyday. But it doesn't mean it's easy or it even works for the patients.
I used to know an old engineer who taught me the term "working the problem." It took me a while to grasp the concept, which now seems so obvious: to keep working away at a confusing and massive problem, to keep picking at it and turning it every which way, until it begins to unravel. You are clearly good at 'working the problem.'
Wish I had more to offer -- stay in touch and let us know how you do.
I had Lyme and Babesiosis initially, and my LLMD didn't do Levaquin or Rocephin for those. Not until now (with a new dx of Anaplasmosis) has doxy ever been suggested, so I have no data to offer you on any of those meds. I have not started the doxy due to my yeast issues. I am in other words dragging my feet. I think I'm just tired of it all.
The ILADS guidelines are to my knowledge just suggestions and LLMDs use their own tweaks, so I'm not surprised you're not finding them adhered to. The beef nonILADS MDs have with ILADS is that it is not 'evidence-based medicine.' No drug trials etc. I see why they think that, and why the broadstroke ILADS approach makes the IDSA guys crazy....but the IDSA guys are sitting on their thumbs murmuring the same mantras over and over without looking at the misery around them. All in all, I'll take a thinking ILADS MD over a non-thinking IDSA MD anyday. But it doesn't mean it's easy or it even works for the patients.
I used to know an old engineer who taught me the term "working the problem." It took me a while to grasp the concept, which now seems so obvious: to keep working away at a confusing and massive problem, to keep picking at it and turning it every which way, until it begins to unravel. You are clearly good at 'working the problem.'
Wish I had more to offer -- stay in touch and let us know how you do.
Hi Jackie,
Thank you so much for taking the time to share all of this information. I really appreciate all of it.
To answer your questions, PAS type 1 has been linked to a specific genetic mutation (AIRE protein). I have PAS type 2, which has been shown to run in families, but with variable manifestations among family members. It's antibody and T-cell mediated like many autoimmune diseases, and the suspected haplotypes have been identified, but that's it for now.
Hopkins Shmopkins. That's all I have to say about that. They almost killed me a few times.
The HME titer was positive (IgG) through Igenex. The Bartonella diagnosis has been a clinical one, made by 3 different docs (one alternative, one mainstream GP, and one LLMD).
I do believe that the symptoms I continue to feel are a direct result of Lyme and not PAS. Just want them to go away, because many of them are either painful, or frightening, or flat-out embarrassing....or all of the above!
I met with the LLMD today. The pros: He is truly a holistic doctor. He is familiar with dealing with insurance, and said that because my results are positive by both Igenex and CDC standards, and they include the positive IgM, insurance should kick in. He said the picc line should even be covered. (The question is for how many months, and if the home care company's fees will factor into things).
The cons: He had never heard of IV Doxy. He uses only Rocephin and sometimes Levaquin. His estimated IV treatment time was only 6 weeks, at which point he'd switch me to either IV Levaquin or oral Doxy.
The ILADS protocol indicates that a person in my situation (long-term steroid use, late disseminated disease, GI intolerance) should receive a minimum of several months of IV treatment, preferably combination therapy including Flagyl.
I know Rocephin is good for neuro symptoms, but have also read that Doxy can be used for these purposes. My understanding is that a combination of Doxy and Levaquin would be ideal for BB and Bart (and would also take care of the HME). Can all three of these (Rocephin, Doxy, and Levaquin) be combined?? Maybe I'm misinterpreting the ILADS protocol somehow?
Hoping to hear from my GP this week, as he was planning on consulting with a great LLMD. I'm comfortable with this arrangement (medical game of telephone), but the GP is unwilling to help me with the insurance issues and I'm not sure how to manage those on my own.
I guess the big question right now is whether to go on oral Doxy while I wait to start IV whatever. Any words of wisdom on that?
Thank you again for your thoughtful and informed reply! Hope you are doing well.
Take care,
Leigh
Thank you so much for taking the time to share all of this information. I really appreciate all of it.
To answer your questions, PAS type 1 has been linked to a specific genetic mutation (AIRE protein). I have PAS type 2, which has been shown to run in families, but with variable manifestations among family members. It's antibody and T-cell mediated like many autoimmune diseases, and the suspected haplotypes have been identified, but that's it for now.
Hopkins Shmopkins. That's all I have to say about that. They almost killed me a few times.
The HME titer was positive (IgG) through Igenex. The Bartonella diagnosis has been a clinical one, made by 3 different docs (one alternative, one mainstream GP, and one LLMD).
I do believe that the symptoms I continue to feel are a direct result of Lyme and not PAS. Just want them to go away, because many of them are either painful, or frightening, or flat-out embarrassing....or all of the above!
I met with the LLMD today. The pros: He is truly a holistic doctor. He is familiar with dealing with insurance, and said that because my results are positive by both Igenex and CDC standards, and they include the positive IgM, insurance should kick in. He said the picc line should even be covered. (The question is for how many months, and if the home care company's fees will factor into things).
The cons: He had never heard of IV Doxy. He uses only Rocephin and sometimes Levaquin. His estimated IV treatment time was only 6 weeks, at which point he'd switch me to either IV Levaquin or oral Doxy.
The ILADS protocol indicates that a person in my situation (long-term steroid use, late disseminated disease, GI intolerance) should receive a minimum of several months of IV treatment, preferably combination therapy including Flagyl.
I know Rocephin is good for neuro symptoms, but have also read that Doxy can be used for these purposes. My understanding is that a combination of Doxy and Levaquin would be ideal for BB and Bart (and would also take care of the HME). Can all three of these (Rocephin, Doxy, and Levaquin) be combined?? Maybe I'm misinterpreting the ILADS protocol somehow?
Hoping to hear from my GP this week, as he was planning on consulting with a great LLMD. I'm comfortable with this arrangement (medical game of telephone), but the GP is unwilling to help me with the insurance issues and I'm not sure how to manage those on my own.
I guess the big question right now is whether to go on oral Doxy while I wait to start IV whatever. Any words of wisdom on that?
Thank you again for your thoughtful and informed reply! Hope you are doing well.
Take care,
Leigh
PART TWO of TWO:
"But back to Igenex - anyone know why so many mainstream docs have such an issue with this lab?"
---It think it's because Igenex doesn't toe the line with the CDC/IDSA [Infectious Disease Society of America] cabal.
"I mean, it's been validated, right? I know Lyme is (should be) a clinical diagnosis, but if it comes down to 'proof', are there legitimate reasons to doubt Igenex?"
---I don't know what kind of validation you refer to, but one beef I am aware of is that Igenex counts more 'bands' or points of correlation than the CDC/IDSA//LabCorp/other labs do, which means Igenex shows up more positive Lyme results than other labs (which in my mind says they run a better test if it correlates with symptoms, which in me it did). The test bands that Igenex counts include the bands that were used some years ago to produce a Lyme vaccine, which some of the IDSA drs had patented (if I have my facts straight). The vaccine failed, but had it succeeded, those bands would have been rendered useless to test for the presence of the *disease* ... therefore the fellas who patented the vaccine wanted those bands to themselves and so through the CDC/IDSA excluded them from diagnostic tests. (Again, assuming I remember the story correctly. As a result, only Igenex tests for those bands now. The bands are still valid markers in those who have not had the vaccine, and very few people had it before it was withdrawn from the market. If you are up to reading, 'Cure Unknown' by Pamela Weintraub is a terrific book that covers this whole territory and much beyond ... terrible title, great book about Lyme+.
"For example, how many people actually have negative results from that lab?"
---This is a criticism from the IDSA against Igenex, and the leading lights at the IDSA have staked their reputations on Lyme being a benign and self-limiting disease. Igenex counts more bands, and Igenex reports more positive test results. So either Igenex is cooking the test results, or Igenex is running more detailed and more accurate reports. You decide.
"I am doubtful about the Rocephin given my history, and feel that I would probably benefit most from IV Doxy in combination with another, pulsatile antibiotic for the suspected Bartonella."
---This may well work, but there are many approaches to Lyme because it is such a slippery customer and the treatments are still evolving. If you read Burrascano's treatment hints/guidelines at ILADS [dot] org, you'll see the complexity of the topic. I have not been diagnosed with Bartonella, so can't speak to it.
"I like the idea of oral abx because there are fewer serious risks (it seems), but don't want to waste my time on a drug that may not treat my host of symptoms - especially the neurologic ones, or aggravate other issues."
---Agree. It's my impression that refractory cases are the ones usually treated IV, but otherwise oral abx are considered quite effective if given at the right doses in the right combinations for the right length of time.
You are in Lyme heaven (or h*ll) where you live, but the good news is that there are LLMDs not too far away. My recommendation (as a patient still battling the bugs, not as a medical person of any kind at all) would be to find an LLMD who will work with your endocrinologist [who as a group are not known for their Lyme savvy -- I saw three endos before I was diagnosed with Lyme by an LLMD] or can find you a new endocrinologist. Not all LLMDs play well with others, and some are lone wolves who can't or won't coordinate treatment with other MDs, and as mentioned above, the other MDs too often won't treat a patient for ancillary complaints if the patient is seeing an LLMD. Liability and ethics concerns, I would guess, but leaves us patients twisting in the wind.
Gorbybelle made an asute observation above: consider that some of your symptoms may not be PAS triggered by Lyme, but may themselves be Lyme-induced symptoms. All the more reason to find an LLMD who plays well with others.
Sorry for the long post, but I hope it's helpful. Please stay in touch and let us know how you do and so on. Hang in there.
--END POST--
"But back to Igenex - anyone know why so many mainstream docs have such an issue with this lab?"
---It think it's because Igenex doesn't toe the line with the CDC/IDSA [Infectious Disease Society of America] cabal.
"I mean, it's been validated, right? I know Lyme is (should be) a clinical diagnosis, but if it comes down to 'proof', are there legitimate reasons to doubt Igenex?"
---I don't know what kind of validation you refer to, but one beef I am aware of is that Igenex counts more 'bands' or points of correlation than the CDC/IDSA//LabCorp/other labs do, which means Igenex shows up more positive Lyme results than other labs (which in my mind says they run a better test if it correlates with symptoms, which in me it did). The test bands that Igenex counts include the bands that were used some years ago to produce a Lyme vaccine, which some of the IDSA drs had patented (if I have my facts straight). The vaccine failed, but had it succeeded, those bands would have been rendered useless to test for the presence of the *disease* ... therefore the fellas who patented the vaccine wanted those bands to themselves and so through the CDC/IDSA excluded them from diagnostic tests. (Again, assuming I remember the story correctly. As a result, only Igenex tests for those bands now. The bands are still valid markers in those who have not had the vaccine, and very few people had it before it was withdrawn from the market. If you are up to reading, 'Cure Unknown' by Pamela Weintraub is a terrific book that covers this whole territory and much beyond ... terrible title, great book about Lyme+.
"For example, how many people actually have negative results from that lab?"
---This is a criticism from the IDSA against Igenex, and the leading lights at the IDSA have staked their reputations on Lyme being a benign and self-limiting disease. Igenex counts more bands, and Igenex reports more positive test results. So either Igenex is cooking the test results, or Igenex is running more detailed and more accurate reports. You decide.
"I am doubtful about the Rocephin given my history, and feel that I would probably benefit most from IV Doxy in combination with another, pulsatile antibiotic for the suspected Bartonella."
---This may well work, but there are many approaches to Lyme because it is such a slippery customer and the treatments are still evolving. If you read Burrascano's treatment hints/guidelines at ILADS [dot] org, you'll see the complexity of the topic. I have not been diagnosed with Bartonella, so can't speak to it.
"I like the idea of oral abx because there are fewer serious risks (it seems), but don't want to waste my time on a drug that may not treat my host of symptoms - especially the neurologic ones, or aggravate other issues."
---Agree. It's my impression that refractory cases are the ones usually treated IV, but otherwise oral abx are considered quite effective if given at the right doses in the right combinations for the right length of time.
You are in Lyme heaven (or h*ll) where you live, but the good news is that there are LLMDs not too far away. My recommendation (as a patient still battling the bugs, not as a medical person of any kind at all) would be to find an LLMD who will work with your endocrinologist [who as a group are not known for their Lyme savvy -- I saw three endos before I was diagnosed with Lyme by an LLMD] or can find you a new endocrinologist. Not all LLMDs play well with others, and some are lone wolves who can't or won't coordinate treatment with other MDs, and as mentioned above, the other MDs too often won't treat a patient for ancillary complaints if the patient is seeing an LLMD. Liability and ethics concerns, I would guess, but leaves us patients twisting in the wind.
Gorbybelle made an asute observation above: consider that some of your symptoms may not be PAS triggered by Lyme, but may themselves be Lyme-induced symptoms. All the more reason to find an LLMD who plays well with others.
Sorry for the long post, but I hope it's helpful. Please stay in touch and let us know how you do and so on. Hang in there.
--END POST--
PART ONE of TWO:
Wow. And I think *I've* had a hard time. It's nothing compared to what you're dealing with. Admiration for, and kudos to, you. This website has helped me hugely with ideas, advice and comradeship, and I hope we can do the same for you.
I'll quote from your post above and then comment: "I've been feeling lousy about 3 years or so. Before that I was very healthy."
---That sounds familiar to many of us here.
"It took until January to get a single diagnosis, only after things had reached a truly critical point several times and I was literally withering away. I won't go into the details here, but suffice it to say that I learned through my experience to educate and advocate for myself." ---Ditto.
"I have Polyglandular Autoimmune Syndrome, which in my case includes primary adrenal insufficiency (Addison's Disease), hypothyroidism, hypogonadism, atrophic gastritis, pancreatitis, malabsorption and anemia, and vitiligo. There is a genetic tendency for this; however, I have an identical twin sister who is healthy."
---It appears from something I just read that the PAS gene in question has been identified; has it been confirmed that you have this gene, or is the diagnosis based on your symptom constellation? Given where you live, was the diagnosis confirmed at Johns Hopkins? Has your identical twin been tested for the genetic condition -- ?
"This makes me think that in my body, the Syndrome was triggered by something acquired/environmental - Lyme makes sense for lots of reasons (lifestyle, profession, symptoms, labs, etc)."
---Have you been tested for heavy metals etc.?
"So to answer your question, I believe that I was prone to these problems but Lyme was the trigger. ... Many of the symptoms of Lyme overlap with those of PAS, but there are some that just never really fit (like high cyclical fevers, rashes, arthritis, neuropathies)."
---What other tickborne diseases have you been tested for, and what was the result? Which labs ran the tests?
"I saw one of the (supposed) "best" infectious disease docs in the world last year, he listened to my laundry list of symptoms (which are textbook Lyme) and noted my positive ELISA but didn't run a single test or consider treating me empirically."
---ID docs don't give Lyme any respect. I recently saw an ID doc for another ailment, and despite my positive old Lyme tests and a recent tick bite and new symptoms from it, he refused to do any new tick tests on me; come to find out months later, I actually do have a new tickborne illness which can be extremely serious in some who are not treated early. Which is my way of saying: ID docs are not big on Lyme in general. (The first one I saw 3 years ago was at least honest enough to say "I know you're sick, but I don't know with what.")
"I saw a neurologist who suspected MS and did a spinal tap, etc (which sent me into an unrecognized Addison's crisis and almost killed me), didn't consider Lyme, sent me on my way."
---Ditto for neurologists as for ID docs. I can't tell from your comments what kind of MD you are seeing now to treat your Lyme (and possible coinfections, since ticks are promiscuous and carry all sorts of things), but strongly recommend that you see a so-called Lyme Literate MD, or LLMD for short, meaning an MD (can be any specialty or a GP) who takes a broad and progressive view on diagnosis and treatment of Lyme+. ILADS is a group many LLMDs belong to, and their website ILADS [dot] org is quite helpful. Were I in your shoes, I'd be sure I was seeing an LLMD who is willing to work with other MDs who would understand your other medical conditions and can take an integrated approach. This is probably the most important piece of (nonmedical, just an ignorant patient here) advice I can give anyone. A hard part of this advice is that nonLLMDs sometimes want nothing at all to do with a patient who sees and is treated by an LLMD, both for philosophical reasons and likely for liability reasons as well. I run into that trying to triangulate between my LLMD and my other MDs on a much lesser scale than you face.
[continued in next message]
Wow. And I think *I've* had a hard time. It's nothing compared to what you're dealing with. Admiration for, and kudos to, you. This website has helped me hugely with ideas, advice and comradeship, and I hope we can do the same for you.
I'll quote from your post above and then comment: "I've been feeling lousy about 3 years or so. Before that I was very healthy."
---That sounds familiar to many of us here.
"It took until January to get a single diagnosis, only after things had reached a truly critical point several times and I was literally withering away. I won't go into the details here, but suffice it to say that I learned through my experience to educate and advocate for myself." ---Ditto.
"I have Polyglandular Autoimmune Syndrome, which in my case includes primary adrenal insufficiency (Addison's Disease), hypothyroidism, hypogonadism, atrophic gastritis, pancreatitis, malabsorption and anemia, and vitiligo. There is a genetic tendency for this; however, I have an identical twin sister who is healthy."
---It appears from something I just read that the PAS gene in question has been identified; has it been confirmed that you have this gene, or is the diagnosis based on your symptom constellation? Given where you live, was the diagnosis confirmed at Johns Hopkins? Has your identical twin been tested for the genetic condition -- ?
"This makes me think that in my body, the Syndrome was triggered by something acquired/environmental - Lyme makes sense for lots of reasons (lifestyle, profession, symptoms, labs, etc)."
---Have you been tested for heavy metals etc.?
"So to answer your question, I believe that I was prone to these problems but Lyme was the trigger. ... Many of the symptoms of Lyme overlap with those of PAS, but there are some that just never really fit (like high cyclical fevers, rashes, arthritis, neuropathies)."
---What other tickborne diseases have you been tested for, and what was the result? Which labs ran the tests?
"I saw one of the (supposed) "best" infectious disease docs in the world last year, he listened to my laundry list of symptoms (which are textbook Lyme) and noted my positive ELISA but didn't run a single test or consider treating me empirically."
---ID docs don't give Lyme any respect. I recently saw an ID doc for another ailment, and despite my positive old Lyme tests and a recent tick bite and new symptoms from it, he refused to do any new tick tests on me; come to find out months later, I actually do have a new tickborne illness which can be extremely serious in some who are not treated early. Which is my way of saying: ID docs are not big on Lyme in general. (The first one I saw 3 years ago was at least honest enough to say "I know you're sick, but I don't know with what.")
"I saw a neurologist who suspected MS and did a spinal tap, etc (which sent me into an unrecognized Addison's crisis and almost killed me), didn't consider Lyme, sent me on my way."
---Ditto for neurologists as for ID docs. I can't tell from your comments what kind of MD you are seeing now to treat your Lyme (and possible coinfections, since ticks are promiscuous and carry all sorts of things), but strongly recommend that you see a so-called Lyme Literate MD, or LLMD for short, meaning an MD (can be any specialty or a GP) who takes a broad and progressive view on diagnosis and treatment of Lyme+. ILADS is a group many LLMDs belong to, and their website ILADS [dot] org is quite helpful. Were I in your shoes, I'd be sure I was seeing an LLMD who is willing to work with other MDs who would understand your other medical conditions and can take an integrated approach. This is probably the most important piece of (nonmedical, just an ignorant patient here) advice I can give anyone. A hard part of this advice is that nonLLMDs sometimes want nothing at all to do with a patient who sees and is treated by an LLMD, both for philosophical reasons and likely for liability reasons as well. I run into that trying to triangulate between my LLMD and my other MDs on a much lesser scale than you face.
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Hi everyone and thank you for your replies and suggestions. I'll take them all to heart.
I've been feeling lousy about 3 years or so. Before that I was very healthy. It took until January to get a single diagnosis, only after things had reached a truly critical point several times and I was literally withering away. I won't go into the details here, but suffice it to say that I learned through my experience to educate and advocate for myself.
I have Polyglandular Autoimmune Syndrome, which in my case includes primary adrenal insufficiency (Addison's Disease), hypothyroidism, hypogonadism, atrophic gastritis, pancreatitis, malabsorption and anemia, and vitiligo. There is a genetic tendency for this; however, I have an identical twin sister who is healthy. This makes me think that in my body, the Syndrome was triggered by something acquired/environmental - Lyme makes sense for lots of reasons (lifestyle, profession, symptoms, labs, etc).
So to answer your question, I believe that I was prone to these problems but Lyme was the trigger. Who's to say what would have happened if it had been diagnosed and treated sooner? The signs were there all along. Many of the symptoms of Lyme overlap with those of PAS, but there are some that just never really fit (like high cyclical fevers, rashes, arthritis, neuropathies). I'm glad to have some clarity now and hope treatment will help somehow.
I take the steroids for Addison's. Technically a person with this disease should require only a physiologic dose of steroids to replace the body's natural cortisol, but from the beginning I've needed whopper doses just to function. At first my docs attributed this to malabsorption problems, but I wasn't requiring large doses of my other replacement hormones or medications, so this didn't jive with me. They (and I) kept tossing around the idea of "something else" going on...couldn't be MS, because I'd had a full work-up for that a year ago, couldn't be vasculitis because higher steroid doses didn't help...so I went through my records again with a fine-toothed comb and found the positive ELISA tests and questionable Western Blots, read up on IgeneX and gave it a shot. Voila!
I saw one of the (supposed) "best" infectious disease docs in the world last year, he listened to my laundry list of symptoms (which are textbook Lyme) and noted my positive ELISA but didn't run a single test or consider treating me empirically. I saw a neurologist who suspected MS and did a spinal tap, etc (which sent me into an unrecognized Addison's crisis and almost killed me), didn't consider Lyme, sent me on my way. The list goes on and on...
But back to Igenex - anyone know why so many mainstream docs have such an issue with this lab? I mean, it's been validated, right? I know Lyme is (should be) a clinical diagnosis, but if it comes down to "proof", are there legitimate reasons to doubt Igenex? For example, how many people actually have negative results from that lab? Just curious...My results make sense to me, but I am an objective person and like to have all the facts.
I am doubtful about the Rocephin given my history, and feel that I would probably benefit most from IV Doxy in combination with another, pulsatile antibiotic for the suspected Bartonella. I like the idea of oral abx because there are fewer serious risks (it seems), but don't want to waste my time on a drug that may not treat my host of symptoms - especially the neurologic ones, or aggravate other issues.
Anyway, thank you again. I'd be glad to hear about your experiences with IgeneX, IV antibiotics, $$$, and any other pertinent Lyme info.
Leigh
I've been feeling lousy about 3 years or so. Before that I was very healthy. It took until January to get a single diagnosis, only after things had reached a truly critical point several times and I was literally withering away. I won't go into the details here, but suffice it to say that I learned through my experience to educate and advocate for myself.
I have Polyglandular Autoimmune Syndrome, which in my case includes primary adrenal insufficiency (Addison's Disease), hypothyroidism, hypogonadism, atrophic gastritis, pancreatitis, malabsorption and anemia, and vitiligo. There is a genetic tendency for this; however, I have an identical twin sister who is healthy. This makes me think that in my body, the Syndrome was triggered by something acquired/environmental - Lyme makes sense for lots of reasons (lifestyle, profession, symptoms, labs, etc).
So to answer your question, I believe that I was prone to these problems but Lyme was the trigger. Who's to say what would have happened if it had been diagnosed and treated sooner? The signs were there all along. Many of the symptoms of Lyme overlap with those of PAS, but there are some that just never really fit (like high cyclical fevers, rashes, arthritis, neuropathies). I'm glad to have some clarity now and hope treatment will help somehow.
I take the steroids for Addison's. Technically a person with this disease should require only a physiologic dose of steroids to replace the body's natural cortisol, but from the beginning I've needed whopper doses just to function. At first my docs attributed this to malabsorption problems, but I wasn't requiring large doses of my other replacement hormones or medications, so this didn't jive with me. They (and I) kept tossing around the idea of "something else" going on...couldn't be MS, because I'd had a full work-up for that a year ago, couldn't be vasculitis because higher steroid doses didn't help...so I went through my records again with a fine-toothed comb and found the positive ELISA tests and questionable Western Blots, read up on IgeneX and gave it a shot. Voila!
I saw one of the (supposed) "best" infectious disease docs in the world last year, he listened to my laundry list of symptoms (which are textbook Lyme) and noted my positive ELISA but didn't run a single test or consider treating me empirically. I saw a neurologist who suspected MS and did a spinal tap, etc (which sent me into an unrecognized Addison's crisis and almost killed me), didn't consider Lyme, sent me on my way. The list goes on and on...
But back to Igenex - anyone know why so many mainstream docs have such an issue with this lab? I mean, it's been validated, right? I know Lyme is (should be) a clinical diagnosis, but if it comes down to "proof", are there legitimate reasons to doubt Igenex? For example, how many people actually have negative results from that lab? Just curious...My results make sense to me, but I am an objective person and like to have all the facts.
I am doubtful about the Rocephin given my history, and feel that I would probably benefit most from IV Doxy in combination with another, pulsatile antibiotic for the suspected Bartonella. I like the idea of oral abx because there are fewer serious risks (it seems), but don't want to waste my time on a drug that may not treat my host of symptoms - especially the neurologic ones, or aggravate other issues.
Anyway, thank you again. I'd be glad to hear about your experiences with IgeneX, IV antibiotics, $$$, and any other pertinent Lyme info.
Leigh
Good point, Gorby. The ever-tricky Lyme bugs & their scummy friends.
leigh1234, the steroids may have confused things as well because as you know they suppress your immune system and make it hard to fight the Lyme. Could I ask for what condition you are on the steroids? Don't answer if you don't wish to, no problem.
leigh1234, the steroids may have confused things as well because as you know they suppress your immune system and make it hard to fight the Lyme. Could I ask for what condition you are on the steroids? Don't answer if you don't wish to, no problem.
HI, - just wondering how long you have been infected with lyme? Could your other health probs. be part of the lyme?
best wishes - gorbs
best wishes - gorbs
Yes Jackie it is very sad. I haven't seen any signs of it getting any better either.
Sad state of affairs, isn't it. I have come to resent very much not getting my questions answered and not being treated like a sentient human who can indeed hold up my end of a conversation about this medical stuff. I may be ill, but I'm not stupid!
And the frosting on the cake is how much the MDs mistrust each other so much when it comes to Lyme. Guess who gets left in the middle? Yes, *us*.
/end of rant/
Happy Monday! May I please have another weekend? Please?
And the frosting on the cake is how much the MDs mistrust each other so much when it comes to Lyme. Guess who gets left in the middle? Yes, *us*.
/end of rant/
Happy Monday! May I please have another weekend? Please?
Regarding the last paragraph in you post above, I couldn't agree more. In addition, the numerous misdiagnoses I have received makes me even more of a skeptic.
If you google 'ilads [dot] org', the first hit will be the main website for ILADS. The first link under that hit is Treatment Guidelines. Go there, and then scroll down to the third item, 'Diagnostic Hints ...' by Joseph Burrascano MD. You can download the article; the site says it's a very large file but it was no big deal for my computer. I finally printed them out and am thoroughly reading them, after having looked at them occasionally over the last few years. His approach, whether you agree or disagree with it, is very thoughtful, as in 'full of thought'.
Also if you want to read more about the interpretation of bands, I have printed out and taped to my wall the list of bands and their associations for easy reference. (Other websites have it too.) www [dot] truthaboutlymedisease [dot] com / phpBB3 / viewtopic.php ? f=6 & t=15
I don't think you need to be that specific in what search you type in, but that's what my printout says at the top. And because the medhelp robot usually replaces URLs in posts with asterisks, you will have to retype what I typed above, leaving out the extra spaces and putting a period where it says [dot]. You get the idea.
Others who post here are more up than I on the technicalities of the test results, so if you have specific questions you might post a new query about it specifically so it doesn't get lost in this thread.
Given your concerns about Rocephin IV, the LLMD may relent and use oral abx. Never know till you ask. I too am nervous about MDs prescribing things that give me problems -- it happens way too often, so I'm not as obedient as I used to be. Am much more skeptical now of all medical advice and just won't go there unless I'm convinced all the angles have been considered.
Take care, let us know how you do.
Also if you want to read more about the interpretation of bands, I have printed out and taped to my wall the list of bands and their associations for easy reference. (Other websites have it too.) www [dot] truthaboutlymedisease [dot] com / phpBB3 / viewtopic.php ? f=6 & t=15
I don't think you need to be that specific in what search you type in, but that's what my printout says at the top. And because the medhelp robot usually replaces URLs in posts with asterisks, you will have to retype what I typed above, leaving out the extra spaces and putting a period where it says [dot]. You get the idea.
Others who post here are more up than I on the technicalities of the test results, so if you have specific questions you might post a new query about it specifically so it doesn't get lost in this thread.
Given your concerns about Rocephin IV, the LLMD may relent and use oral abx. Never know till you ask. I too am nervous about MDs prescribing things that give me problems -- it happens way too often, so I'm not as obedient as I used to be. Am much more skeptical now of all medical advice and just won't go there unless I'm convinced all the angles have been considered.
Take care, let us know how you do.
I am so sorry to hear about. Lyme does create other issues in the the body. It sounds like you need and IV and I know it is so hard to pay LLMD's. Do you have insurance? I know mine will pay 70% out-of-network, others pay anywhere from like 30-80 percent. I think JackieCalifornia gave you some good suggestions and I hope you will get the treatment you need.
Thank you.
The band I tested positive for on traditional WBs was 41kDa. On the Igenex IgM I tested positive for 18, 23-25, 31, 34, 39, 41, and 83-93 and on the IgG I tested positive for 39 and 41. I think the use of high-dose steroids reactivated the old infection, hence the IgM result. I probably should have reacted more dramatically on the IgG, but my total serum IgG is below range.
Jackie, if you have a moment, would you mind posting the link for that specific treatment info? Sorry. I've been reading through the ILADS site and all I can find are the indications for IV treatment, which include two of my main issues (history of steroid use and late disseminated disease). I also have digestive problems - atrophic gastritis, etc, that make taking oral meds very difficult.
I'm confused because I thought oral abx couldn't penetrate the blood-brain barrier (unless they're given in very high doses, which I'm sure I couldn't handle). Am I wrong?
I really appreciate what you've said regarding doctor-patient communication. I've been to literally dozens of docs in the last year or so, and this has been a major issue.
Thanks again,
Leigh
The band I tested positive for on traditional WBs was 41kDa. On the Igenex IgM I tested positive for 18, 23-25, 31, 34, 39, 41, and 83-93 and on the IgG I tested positive for 39 and 41. I think the use of high-dose steroids reactivated the old infection, hence the IgM result. I probably should have reacted more dramatically on the IgG, but my total serum IgG is below range.
Jackie, if you have a moment, would you mind posting the link for that specific treatment info? Sorry. I've been reading through the ILADS site and all I can find are the indications for IV treatment, which include two of my main issues (history of steroid use and late disseminated disease). I also have digestive problems - atrophic gastritis, etc, that make taking oral meds very difficult.
I'm confused because I thought oral abx couldn't penetrate the blood-brain barrier (unless they're given in very high doses, which I'm sure I couldn't handle). Am I wrong?
I really appreciate what you've said regarding doctor-patient communication. I've been to literally dozens of docs in the last year or so, and this has been a major issue.
Thanks again,
Leigh
Talk to your MD about the possibility of using oral antibiotics instead of IV. He/she may not have considered cost, but you should not fear to bring it up.
On the ILADS [dot] org website, Dr Burrascano's treatment guidelines (I was reading them yesterday) say that while IV may be called for in some circumstances, the trend is toward oral antibiotics because they appear to be as effective as IV but without the cost or risks of PICC line infections.
[One thing I don't like about too many MDs I see is that there is no dialog between us. I go in, tell the dr how I've been feeling, respond to a few questions perhaps, and I'm given my marching orders. No give and take about what might work better for me, or an opportunity to ask the dr questions. But that doesn't mean you shouldn't try to ask, or to call or fax or write the next day or week with your questions. It usually takes me a day or so to think through what happened at the appointment and come up with my questions/concerns.]
On the ILADS [dot] org website, Dr Burrascano's treatment guidelines (I was reading them yesterday) say that while IV may be called for in some circumstances, the trend is toward oral antibiotics because they appear to be as effective as IV but without the cost or risks of PICC line infections.
[One thing I don't like about too many MDs I see is that there is no dialog between us. I go in, tell the dr how I've been feeling, respond to a few questions perhaps, and I'm given my marching orders. No give and take about what might work better for me, or an opportunity to ask the dr questions. But that doesn't mean you shouldn't try to ask, or to call or fax or write the next day or week with your questions. It usually takes me a day or so to think through what happened at the appointment and come up with my questions/concerns.]
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