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Rollercoaster of opinions about my diagnosis!
I am in that limbo land again. A friend of mine, (this is a different one than I mentioned several days ago) who I respect, is very smart and has a medical background - has dashed my diagnosis of Lyme. Yet another naysayer and I can't help but keep my mind open to their hypotheses.
This person has a valid argument for the reason I have my symptoms, but in my opinion, I can't possibly rule out Lyme disease, regardless. Here is their argument:
1) The Igenex test just shows that I have been exposed, not active infection (even when I protested with the IgM vs. IgG issue). They asked if a positive culture of this bacteria has been found in my tissue. Of course, I had to say "no".
2) I have had central nervous system (CNS) symptoms all of my life due to signficant life stressors from age 10/11 up. Now, when stressed, these symptoms have moved to the peripheral nervous system (PNS), hence the peripheral neuropathy - my most annoying/painful symptom.
3) They said that if I had an "infection", it would not fluctuate. Once you get syphilis, for example, you have the symptoms and they don't fluctuate. Mine seems to fluctuate every 6-8 weeks and could be attributed to "stress".
4) When you are stressed, less oxygen is shunted to your extremities, nerve cells die, and your feet burn. My rebuttle to that is - doesn't stress make any illness worse? Is it the chicken or the egg? Stress first and then symptoms, or symptoms, then stress from the symptoms? Who knows!!??
5) Has anyone died from Lyme disease? - This person's answer was "no". So, why, they asked, would I subject myself to an invasive medical procedure (port in chest) that has a chance to become infected and kill me quickly, just to take a "small chance" to ease these symptoms?
6) Live with the pain. It's real, undoubtedly, but don't pay attention to it. The more you focus on your symptoms, the more you will have. (This is true to an extent, but I can't ignore my pain when it reaches a certain threshold!). I have tried this and it works, for those times when it is mild to moderate. Severe - forget it.
7) Go ahead and try a course of oral antibiotics (least invasive), but be objective and take into account placebo effect and the possibility that you are in one of your upswings, without as many symptoms. Fair enough.
Okay, so many of you will have that knee-jerk reaction: She is being told it's stress/fibromyalgia/CFS basically and she's getting written off! Right? But, the argument is not without merit. It may or may not be right, but it's not out in left field here. I am trying to be so objective it makes me sick:) But, with that argument, I essentially still feel like seeking treatment - maybe not as agressively, like a port in the chest. Maybe my symptoms aren't linked to chronic Lyme? Maybe they are! I have a pretty convincing Igenex result and, still, I question!? Argh! To be conservative, I'm going to lean more toward oral to start, then PICC line, then port. I am thinking it's my body, I have to follow what I feel is right, with an emphasis on "I". I won't be radical in my treatment - it will be thoroughly researched, rest assured.
I don't know, what do you guys think? I had my MRI yesterday and I'm seeing the neuro Friday. I'm told the MRI won't be available for the neuro appt. It takes 7-14 days for the report to be done.
Frustrated.
This person has a valid argument for the reason I have my symptoms, but in my opinion, I can't possibly rule out Lyme disease, regardless. Here is their argument:
1) The Igenex test just shows that I have been exposed, not active infection (even when I protested with the IgM vs. IgG issue). They asked if a positive culture of this bacteria has been found in my tissue. Of course, I had to say "no".
2) I have had central nervous system (CNS) symptoms all of my life due to signficant life stressors from age 10/11 up. Now, when stressed, these symptoms have moved to the peripheral nervous system (PNS), hence the peripheral neuropathy - my most annoying/painful symptom.
3) They said that if I had an "infection", it would not fluctuate. Once you get syphilis, for example, you have the symptoms and they don't fluctuate. Mine seems to fluctuate every 6-8 weeks and could be attributed to "stress".
4) When you are stressed, less oxygen is shunted to your extremities, nerve cells die, and your feet burn. My rebuttle to that is - doesn't stress make any illness worse? Is it the chicken or the egg? Stress first and then symptoms, or symptoms, then stress from the symptoms? Who knows!!??
5) Has anyone died from Lyme disease? - This person's answer was "no". So, why, they asked, would I subject myself to an invasive medical procedure (port in chest) that has a chance to become infected and kill me quickly, just to take a "small chance" to ease these symptoms?
6) Live with the pain. It's real, undoubtedly, but don't pay attention to it. The more you focus on your symptoms, the more you will have. (This is true to an extent, but I can't ignore my pain when it reaches a certain threshold!). I have tried this and it works, for those times when it is mild to moderate. Severe - forget it.
7) Go ahead and try a course of oral antibiotics (least invasive), but be objective and take into account placebo effect and the possibility that you are in one of your upswings, without as many symptoms. Fair enough.
Okay, so many of you will have that knee-jerk reaction: She is being told it's stress/fibromyalgia/CFS basically and she's getting written off! Right? But, the argument is not without merit. It may or may not be right, but it's not out in left field here. I am trying to be so objective it makes me sick:) But, with that argument, I essentially still feel like seeking treatment - maybe not as agressively, like a port in the chest. Maybe my symptoms aren't linked to chronic Lyme? Maybe they are! I have a pretty convincing Igenex result and, still, I question!? Argh! To be conservative, I'm going to lean more toward oral to start, then PICC line, then port. I am thinking it's my body, I have to follow what I feel is right, with an emphasis on "I". I won't be radical in my treatment - it will be thoroughly researched, rest assured.
I don't know, what do you guys think? I had my MRI yesterday and I'm seeing the neuro Friday. I'm told the MRI won't be available for the neuro appt. It takes 7-14 days for the report to be done.
Frustrated.
On item three also -- Dr. B has a theory on the fluctuating symptoms if you chart them, you may find that his theory of lyme bacteria becoming "active" at certain times to hold true for you. Makes no sense to me whatsoever how a bacteria feels like becoming active every six to eight weeks, but maybe someone else who understands that one can provide more insights.
If an IV would cure me, I'd do it! The only research I know is that it temporarily cured folks. I do know anecdotally that the cure is individualized for each patient as they think the bacteria mutates and we also become immune to the abx. So before it's over you could have tried every family of abx. they try to throw a lot at me and put down other reasons -- besides lyme -- for prescribing it!
We need a new drug. We need a new test. We need more research!
If an IV would cure me, I'd do it! The only research I know is that it temporarily cured folks. I do know anecdotally that the cure is individualized for each patient as they think the bacteria mutates and we also become immune to the abx. So before it's over you could have tried every family of abx. they try to throw a lot at me and put down other reasons -- besides lyme -- for prescribing it!
We need a new drug. We need a new test. We need more research!
Being in limbo land is no good, I ought to know! :-( You posed some good questions that warrant comment:
1) On this note. I showed my conventional ID my Igenex blood work which is nearly identical to yours (CDC positive for IGM only with various bands). I think he was telling me the truth when he said that my bloodwork was quite similar to others that he sees. So either everyone that seems him has Lyme or the bloodwork may not look so different from regular population. I think the truth is somewhere in between, but who knows.
3) I don't know anyone with Syphilis (not sure how much data there is for this), but I wouldn't be surprised if symptoms fluctuate here as well. I don't make too much out of this. One of my doctors who thinks I have a chronic headache believes that is very typical of stress/headache, but not of an infection. Again, just FYI.
5) Talk is cheap if one's quality of life hasn't diminished to zero and hasn't experienced pain/discomfort 24/7.
7) I'm in the same dillemma. For me personally, I figure that my odds of having Lyme are not that high, but the risk of not treating Lyme is huge. What do I do? Ironically, it seems to me that if the odds of having Lyme are low (i.e., the likelihood of seeing improvement after 4mo of abx is also low). And if the symptoms worsen then one is more inclined to do IV abx, anyway. My point is that if the pain/discomfort/functionality of life has gotten really bad, and the likelihood of having Lyme is small, then to me, it feels like that is a stronger argument for IV abx, as compared to oral abx. This is quite a conundrum, but this is my current view of my own situation. Keep us posted!
1) On this note. I showed my conventional ID my Igenex blood work which is nearly identical to yours (CDC positive for IGM only with various bands). I think he was telling me the truth when he said that my bloodwork was quite similar to others that he sees. So either everyone that seems him has Lyme or the bloodwork may not look so different from regular population. I think the truth is somewhere in between, but who knows.
3) I don't know anyone with Syphilis (not sure how much data there is for this), but I wouldn't be surprised if symptoms fluctuate here as well. I don't make too much out of this. One of my doctors who thinks I have a chronic headache believes that is very typical of stress/headache, but not of an infection. Again, just FYI.
5) Talk is cheap if one's quality of life hasn't diminished to zero and hasn't experienced pain/discomfort 24/7.
7) I'm in the same dillemma. For me personally, I figure that my odds of having Lyme are not that high, but the risk of not treating Lyme is huge. What do I do? Ironically, it seems to me that if the odds of having Lyme are low (i.e., the likelihood of seeing improvement after 4mo of abx is also low). And if the symptoms worsen then one is more inclined to do IV abx, anyway. My point is that if the pain/discomfort/functionality of life has gotten really bad, and the likelihood of having Lyme is small, then to me, it feels like that is a stronger argument for IV abx, as compared to oral abx. This is quite a conundrum, but this is my current view of my own situation. Keep us posted!
I am very sorry to hear of your perdicament. I have heard tons of horror stories of diagnosing chronic Lyme Disease and I am in the same boat with you. My friend has it with 3 other coinfections and her lyme lay dorment for 30 years untill she was too stressed for her immune system to deal with it anymore. I have had symptoms of chronic lyme for 2 months and it is already taking a huge toll on my brain and neurological functioning. I had to quit my job and can not do the dishes or write anymore. My muscles/joints and bones hurt and its different everyday. Different what kind of pain and how severe and how long it lasts. Nothing is consistant. The neurologist did an MRI and EMG and they were normal. Lyme shows lesions and it can not have lesions right? I have had one Lyme blood test and it was a 24 hr response negitive, I dont trust it. I want another one. But I want to rule out hypothyroidism also. Keep your chin up and keep fighting. My friend had to fight for 8 yrs for a doctor to officially dx her with Lyme. It's a tough battle to just live with the pain constantly and it's even harder fighting for doctors to listen with your brain not working properly. Good luck. If you want any moral support I am hear to talk. I can use all that I can. At 21 I should not be this ill. I want to live my life like it was before.
Cindy is right. You know I believe our bodies tell us what we need. But on the other hand, there is research out there and I'll give you the links. Our own government had success treating rheumatoid arthritis with antibiotics.* There are other autoimmune illnesses that have been treated with antibiotics... google, "The Roadback Foundation" for success stories. If you have CFS... you should know that two-thirds of CFS patients were found to have high frequencies of mycoplasma (L-form bacteria) in their blood (I suppose tissues as well).** Dr. Mark Shaw and Dr. Jacob Teitelbaum.. two physicians who successfully treated their own fibro/CFS, mention bacterial infections. Dr. Shaw has an article online about it and Dr. Teitelbaum mentions it in his new revised book. He also mentions Professor Garth Nicolson. Incidentally, Dr. Teitelbaum graduated from college in only 3 years.
This is really new research and according to Prof. Nicolson, medical students are not taught about mycoplasma infections. Prof. Nicolson would know, as he taught medical school for over 20 years. I've read that Prof. Nicolson himself came down with CFS and treated his condition.
Of course these are the physicians I listen to.... the ones who have successfully treated their condition and treated many other patients. I've read that most physicians are 10-15 years behind on research and having CFS... I know that my PCP doesn't know much about my condition. However, the treatment that I was on was recommended by an Endocrinologist who has been treating CFS for over 30 years.
At least it is one option. On the one antibiotic protocol that I was on... there were people on there who didn't have a diagnosis and they were having herxing symptoms and eventually improving.
sources:
* http://arthritis.about.com/cs/antibiotic/a/antibiotictreat.htm
** http://www.immed.org/illness/fatigue_illness_research.html
This is really new research and according to Prof. Nicolson, medical students are not taught about mycoplasma infections. Prof. Nicolson would know, as he taught medical school for over 20 years. I've read that Prof. Nicolson himself came down with CFS and treated his condition.
Of course these are the physicians I listen to.... the ones who have successfully treated their condition and treated many other patients. I've read that most physicians are 10-15 years behind on research and having CFS... I know that my PCP doesn't know much about my condition. However, the treatment that I was on was recommended by an Endocrinologist who has been treating CFS for over 30 years.
At least it is one option. On the one antibiotic protocol that I was on... there were people on there who didn't have a diagnosis and they were having herxing symptoms and eventually improving.
sources:
* http://arthritis.about.com/cs/antibiotic/a/antibiotictreat.htm
** http://www.immed.org/illness/fatigue_illness_research.html
forgot to ask and this might help you make up your mind -
any history of tick bite? especially followed by weird ugly red rash with clearing and additional ring?
any rash followed by flu?
even if you did, some folks recover -- according to the internet -- even w/o antibiotics...others recover and it comes back...
i feel for you. it's such a tough call...
any history of tick bite? especially followed by weird ugly red rash with clearing and additional ring?
any rash followed by flu?
even if you did, some folks recover -- according to the internet -- even w/o antibiotics...others recover and it comes back...
i feel for you. it's such a tough call...
Your friend has valid points actually and is really looking out for you. Lyme is controversial. I hate that about this disease. We're still a few years out from both a confirmed diagnosis through better tests and treatments that work for everyone -- based on double-blind research.
My only advice is to simply "go with your gut".
Listen to your intuition. It's trying to tell you something. Make sure you're tuned in!
The agree that stress can cause that peripheral neoropathy. That really sounded like the stress I had a few weeks ago...I thought it might have been from the ABX - a herx or bizarre side effect from just the shear quantity. But it turns out I was in a lot of pain -- anguish over a fight I had with a friend -- and that had to be what precipitated that symptom. Interesting. Who new?
Anyways, go with your gut. You can't lose. Pray. Meditate. Take your time. It's a big decision. It really is.
My only advice is to simply "go with your gut".
Listen to your intuition. It's trying to tell you something. Make sure you're tuned in!
The agree that stress can cause that peripheral neoropathy. That really sounded like the stress I had a few weeks ago...I thought it might have been from the ABX - a herx or bizarre side effect from just the shear quantity. But it turns out I was in a lot of pain -- anguish over a fight I had with a friend -- and that had to be what precipitated that symptom. Interesting. Who new?
Anyways, go with your gut. You can't lose. Pray. Meditate. Take your time. It's a big decision. It really is.
yay! I am fully on board for oral antibiotics. At least I have made my mind up about that:)
I agree with PlateletGal. Even Dr. C. says in his website that a large percentage of people with even one positive, significant band improve from antibiotic treatment.
Hope, I have only taken orals.
Hope, I have only taken orals.
Thanks! Good info. I added to favorites for later reading. I have so much to read! So, I need to check out herxing a little more....
Many people who have neuro-immune and autoimmune conditions have multiple infections, including bacterial infections. So if you take antibiotics and don't have lyme disease, there is still an excellent chance that you will be having herxing symptoms.
Here is the link to research on this and fortunately Professor Garth Nicolson will be here in MedHelp again on May 20th to answer members' questions about these infections. I know that Prof. Nicolson has given at least several speeches on lyme infection and co-infections seen in lyme patients. I've included some of the links to his research in the Health Pages (look to your upper right under "discussions")
Prof. Nicolson's website (The Institute of Molecular Medicine):
http://www.immed.org
I,,too, have doubts about my Lyme dx. My ELISA was neg,only band 41 on IGM,and 2 pos and 2 IND on IgG. CDC neg. Family doc says neg.
but because I had dizziness and then chills, I started oral abx early Feb., and am improving, loads of sups also.I see no need for IV and will continue on zithro and diflucan, now adding septra and so much better than in January.
but because I had dizziness and then chills, I started oral abx early Feb., and am improving, loads of sups also.I see no need for IV and will continue on zithro and diflucan, now adding septra and so much better than in January.
I'm glad to hear your improvement on antibiotics. I knew you did, but I didn't remember if you had said you were about to give up until 4 mo. into treatment. I agree, I have to give it a try. You took oral abx, right? I don't care what bug it's killing if I improve!
My nerve conduction studies were normal - but they just (as you know) test the large nerve fibers. That's the main reason I went up to John's Hopkins, so I could get a biopsy for small fiber neuropathy, which will not show up on nerve conduction/EMGs. My small nerve fiber count was normal, but the nerve cells were abnormal - "excessively segmented and frayed". They said overall normal study, but I don't know why if the cells were abnormal. The neurologist ultimately diagnosed me with small fiber neuropathy due to a "post-viral syndrome" based on these results and my history and symptoms. I asked why my nerve cells would be abnormal and she said there must have been some "insult" to them, like a virus, but she said she was hopeful that I would improve. Well, me too. Hope is my name, but it hasn't improved enough for my liking:) How can I improve and decline, improve and decline, if it's "post-viral"? They don't know, end of story.
Thank you, your comments are always helpful!
My nerve conduction studies were normal - but they just (as you know) test the large nerve fibers. That's the main reason I went up to John's Hopkins, so I could get a biopsy for small fiber neuropathy, which will not show up on nerve conduction/EMGs. My small nerve fiber count was normal, but the nerve cells were abnormal - "excessively segmented and frayed". They said overall normal study, but I don't know why if the cells were abnormal. The neurologist ultimately diagnosed me with small fiber neuropathy due to a "post-viral syndrome" based on these results and my history and symptoms. I asked why my nerve cells would be abnormal and she said there must have been some "insult" to them, like a virus, but she said she was hopeful that I would improve. Well, me too. Hope is my name, but it hasn't improved enough for my liking:) How can I improve and decline, improve and decline, if it's "post-viral"? They don't know, end of story.
Thank you, your comments are always helpful!
It's entirely up to you whether you take treatment and what kind etc...My comments on your friend's opinion is......stress can cause symptoms and make symptoms worse but it does not cause actual nerve damage as evidenced by brain lesions on MRI or objective, abnormal diagnostic testing such as abnormal EMG or nerve conduction tests. I think if your neuropathy has been officially diagnosed by testing then it is more likely to be organic and not caused by stress. If you had symptoms but all normal test results I would be more inclined to believe the stress or emotional trauma issue.
I don't know whether you have lyme or not but depending on how badly you are affected by your symptoms I think at least a trial of antibiotics is worth a try. Even if it is just the orals.
I am one of those people with all normal test results and lots of neuro symptoms. I don't know if I have lyme or not but I clearly improve from antibioitics. And no, it is not a placebo affect. I almost quit them because they were doing nothing. Then at 4 months I started seeing an improvement. I am also a skeptic and didn't expect them to work and they did.
This is just my thoughts on your friend's comment.
I don't know whether you have lyme or not but depending on how badly you are affected by your symptoms I think at least a trial of antibiotics is worth a try. Even if it is just the orals.
I am one of those people with all normal test results and lots of neuro symptoms. I don't know if I have lyme or not but I clearly improve from antibioitics. And no, it is not a placebo affect. I almost quit them because they were doing nothing. Then at 4 months I started seeing an improvement. I am also a skeptic and didn't expect them to work and they did.
This is just my thoughts on your friend's comment.
Thanks Amyloo - I'll use that fish statement with the naysayers:) I am currently reading my first pages of "The Cure Uknown" and I have watched "Under Our Skin". Very good info in the documentary - I just have to get more answers as to if this documentary pertains to me. Am I like the girl in the documentary? I don't know. They don't give details as to her background (or do they - brain fog! LOL)
I am going to make my doc test me for those coinfections like you say. In fact, I'm going to print out your response so I can remember "FISH assay". I'll be glad if they come back positive. I don't know how many more positives I need to get to make everyone (incl. myself) feel comfortable with this Dx.
I am with you, if I were in a wheelchair - hook me up to the IV. I guess I'm a little too on the "healthy" side to decide how invasive I want to get. Note the quotes around "healthy" :) Decreased pain is my focus right now.
I am going to make my doc test me for those coinfections like you say. In fact, I'm going to print out your response so I can remember "FISH assay". I'll be glad if they come back positive. I don't know how many more positives I need to get to make everyone (incl. myself) feel comfortable with this Dx.
I am with you, if I were in a wheelchair - hook me up to the IV. I guess I'm a little too on the "healthy" side to decide how invasive I want to get. Note the quotes around "healthy" :) Decreased pain is my focus right now.
Just a couple of comments: I know your struggle. I was dxed with MS, and am treating lyme disease at the moment. Will MS resolve? Don't know.
Lyme does kill. When it invades your heart, for example. If you haven't already, please watch the documentary "Under our Skin". And also, read "Cure Unknown" by Pamela Weintraub. Both excellent sources to address your concerns.
Many have done well on orals. I spent five weeks in a wheelchair and have serious mobility issues, so I had no problem having a PICC line put in.
Have you been tested for coinfections? Babesia is a nasty one, and can be seen in your red blood cell using the FISH assay. I know alot of people struggle with the lack of testing quality for lyme disease, but it is very difficult (apparently) to see the DNA. Spinal taps reveal lyme DNA only 10-20% of the time, according to what I have found. It's like fishing. You can fish all day and not catch anything, but that doesn't mean there is no fish in the lake. Take care, Amy
Lyme does kill. When it invades your heart, for example. If you haven't already, please watch the documentary "Under our Skin". And also, read "Cure Unknown" by Pamela Weintraub. Both excellent sources to address your concerns.
Many have done well on orals. I spent five weeks in a wheelchair and have serious mobility issues, so I had no problem having a PICC line put in.
Have you been tested for coinfections? Babesia is a nasty one, and can be seen in your red blood cell using the FISH assay. I know alot of people struggle with the lack of testing quality for lyme disease, but it is very difficult (apparently) to see the DNA. Spinal taps reveal lyme DNA only 10-20% of the time, according to what I have found. It's like fishing. You can fish all day and not catch anything, but that doesn't mean there is no fish in the lake. Take care, Amy
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