Aa
Working with two doctors?
My neurologist practice is erratic. At first few weeks ago, the neurologist' assistant NP say western blots result meant nothing, they are negative according to CDC. and they told me to go back to regular doctor and ask "now what?", and to see infectious disease specialist to look for something else, and have neck MRI to make sure it is not MS.
I made appointment with a LLMD, and infectious disease specialist.
I saw infectious disease specialist last week. After review my notes, he tested me for lyme, babesia, bart.
This past Tuesdy, I saw a different neurologist at the same practice who takes over for my regular neurologist (he is out of town since April and won't be back until Mid July) to review neck MRI.
This second neurologist review my case, and asked me if I ever being tested or treated for lyme. I told him, I was only tested for, and told him the result is in the file. He continues to review the information. He goes, "NO MS. Not this, not this.." he rules out everything, and took his time explaining his reasons.
Then he looked at western blot for blood serum, he shrugs and turn next page of lab report. He looked and pointed his finger at western blot result for CSF/Spinal tap, and goes "Uh. NO-NO". He does not wanted to see even one lyme band in any patient's spinal fluid. I have two.
So he is ordering IV antibiotics for one month, then reevaluate. I asked him if he'll test for co-infections. He tells it is not his job, and tell me to see infectious diseases. He gave me the names. I told him I saw one already.
Then I asked him if it is okay for me to see LLMD to test for more co-infections and such. I didn't give him name, but he goes "Dr.....? NO-NO-NO" and draw cross "X" on his name. That LLMD is the one I am going to see.
Today I got phone call from ID specialist, the result for lyme, babesia and bart are all negative. Go figures.
I am see this LLMD this coming Wednesday. Probably doing battery of lab tests then follow up in 3 weeks or so to go over the result and decides on treatment.
More likely I'll have started IV treatment, hopeful, by the time I see LLMD for follow up.
I have feeling neurologist's protocol will be "conventional" type-one ABX at a time, not combined approach (uses different type of ABX at teh same time) nor focus on treating co infections at the same time--hell he doesnt test for coinfections, or using lyme-specialty labs.
However, the neurologist takes the insurance, IV treatments possibly covered by insurance because Rx comes from neurologist, not "fringe"-type of doctors such as LLMD.
Now how do I work it out? Get treatments by two doctors, of course behind the neurologist's back?
I supposed I could do IV antibiotics (I don't know what ABX it will be but the neurologic practice is known for uses Rocepin for lyme) by neurologist, and oral ABXs concurrent by LLMD as long as I tell LLMD what the neurologist is doing and prescribes?
What do you think?
I made appointment with a LLMD, and infectious disease specialist.
I saw infectious disease specialist last week. After review my notes, he tested me for lyme, babesia, bart.
This past Tuesdy, I saw a different neurologist at the same practice who takes over for my regular neurologist (he is out of town since April and won't be back until Mid July) to review neck MRI.
This second neurologist review my case, and asked me if I ever being tested or treated for lyme. I told him, I was only tested for, and told him the result is in the file. He continues to review the information. He goes, "NO MS. Not this, not this.." he rules out everything, and took his time explaining his reasons.
Then he looked at western blot for blood serum, he shrugs and turn next page of lab report. He looked and pointed his finger at western blot result for CSF/Spinal tap, and goes "Uh. NO-NO". He does not wanted to see even one lyme band in any patient's spinal fluid. I have two.
So he is ordering IV antibiotics for one month, then reevaluate. I asked him if he'll test for co-infections. He tells it is not his job, and tell me to see infectious diseases. He gave me the names. I told him I saw one already.
Then I asked him if it is okay for me to see LLMD to test for more co-infections and such. I didn't give him name, but he goes "Dr.....? NO-NO-NO" and draw cross "X" on his name. That LLMD is the one I am going to see.
Today I got phone call from ID specialist, the result for lyme, babesia and bart are all negative. Go figures.
I am see this LLMD this coming Wednesday. Probably doing battery of lab tests then follow up in 3 weeks or so to go over the result and decides on treatment.
More likely I'll have started IV treatment, hopeful, by the time I see LLMD for follow up.
I have feeling neurologist's protocol will be "conventional" type-one ABX at a time, not combined approach (uses different type of ABX at teh same time) nor focus on treating co infections at the same time--hell he doesnt test for coinfections, or using lyme-specialty labs.
However, the neurologist takes the insurance, IV treatments possibly covered by insurance because Rx comes from neurologist, not "fringe"-type of doctors such as LLMD.
Now how do I work it out? Get treatments by two doctors, of course behind the neurologist's back?
I supposed I could do IV antibiotics (I don't know what ABX it will be but the neurologic practice is known for uses Rocepin for lyme) by neurologist, and oral ABXs concurrent by LLMD as long as I tell LLMD what the neurologist is doing and prescribes?
What do you think?
Best Answer
Ha--the quoted (published) LLMD in this thread is the guy whose practice I go to for my own battle with this mess. It is nice to know that you guys--who I go to for the moral support in all this--find him and his message to be of quality enough to share with one another!!!
Stargazer--While most LLMDs do not participate in insurance plans, they are usually more than happy to provide you with all of the information and paperwork you need to submit claims yourself. AND--it has been my experience that, while the Dr. appointments have not been covered, the prescriptions--at least the oral ABX and Mepron--HAVE BEEN.
Knowing that you will be getting a month of IV ABX, your LLMD may be able to work with that and offer you oral Azythromyacin to go with it for the "double treatment." My Dr. has treated me with oral amoxicillin and a drug called probenecid which boosts the blood serum levels of the antibiotic to near IV levels without having to be an actual IV. And, probenecid and the amox were covered under my prescription plan.
Talk to your LLMD--it has been my experience that they (at least mine) are not out to bleed you dry of funds, but to help you in the best way they can based on the resources you have available. IF you find your LLMD is trying to push costly treatments without options and those treatments sound cagey to you--come talk with us. We aren't experts, but there are a lot of people on here that can let you know if things sound "normal" or "off" somehow--so you can be watchful yet hopeful at the same time.
Keep us informed!! We are in your corner!!
Stargazer--While most LLMDs do not participate in insurance plans, they are usually more than happy to provide you with all of the information and paperwork you need to submit claims yourself. AND--it has been my experience that, while the Dr. appointments have not been covered, the prescriptions--at least the oral ABX and Mepron--HAVE BEEN.
Knowing that you will be getting a month of IV ABX, your LLMD may be able to work with that and offer you oral Azythromyacin to go with it for the "double treatment." My Dr. has treated me with oral amoxicillin and a drug called probenecid which boosts the blood serum levels of the antibiotic to near IV levels without having to be an actual IV. And, probenecid and the amox were covered under my prescription plan.
Talk to your LLMD--it has been my experience that they (at least mine) are not out to bleed you dry of funds, but to help you in the best way they can based on the resources you have available. IF you find your LLMD is trying to push costly treatments without options and those treatments sound cagey to you--come talk with us. We aren't experts, but there are a lot of people on here that can let you know if things sound "normal" or "off" somehow--so you can be watchful yet hopeful at the same time.
Keep us informed!! We are in your corner!!
I was reading wikipedia pages on Lyme today, and they have a picture of what is called a "Borrelial lymphocytoma on the cheek (very uncommon)".
The page for Lyme Disease has information that seems to come from both sides of the argument on definition, testing, and treatment, but I think it is a pretty good assumption that the lymphocytoma is indeed uncommon. There is a picture you can look at to compare it to your skin issues.
Hoping this is helpful!
The page for Lyme Disease has information that seems to come from both sides of the argument on definition, testing, and treatment, but I think it is a pretty good assumption that the lymphocytoma is indeed uncommon. There is a picture you can look at to compare it to your skin issues.
Hoping this is helpful!
Night sweats, esp. drenching ones are a classic sign of Babesia. But doxy doesn't treat it. It is a parasite, a cousin of malaria. Mepron is the drug of choice for it. You'll have to ask the LLMD what he thinks about it. Be sure to tell him about the night sweats, and any other symptom you had in the past that went away.
I had to smile when you said the LLMD is hated by local ID docs and neuros. It isn't funny by any measure, but I would consider that a point in favor of the LLMD!
As far as the PICC line, no doctor can force you to under go a medical procedure you do not want. If a doc doesn't want to treat you further then just don't go back. It's not like he can rip it out of your arm if you say you want another opinion on continuing treatment.
That is great that you found a doc in network who will do long term abx!
I had to smile when you said the LLMD is hated by local ID docs and neuros. It isn't funny by any measure, but I would consider that a point in favor of the LLMD!
As far as the PICC line, no doctor can force you to under go a medical procedure you do not want. If a doc doesn't want to treat you further then just don't go back. It's not like he can rip it out of your arm if you say you want another opinion on continuing treatment.
That is great that you found a doc in network who will do long term abx!
I had babesia and did not have shortness of breath, tho I have read it is common.
Don't worry about whether you will stay on PICC or IV. See what the LLMD says.
My LLMD, who is very well established and well known in the field, used *only* oral antibiotics for my Lyme and babesia, so it can be done..
Don't worry about whether you will stay on PICC or IV. See what the LLMD says.
My LLMD, who is very well established and well known in the field, used *only* oral antibiotics for my Lyme and babesia, so it can be done..
Yes, you are right--I have a feeling my neurologist will taking conventional approach. That's why I am going to work with LLMD behind neurologist's back.
At the same time I'll try to push for longer IV treatment from neurologist--i.e. if he shows me new MRI that shows white lesions is improving--I'll acts like a kid when begging him---goody! give me more rounds, please!!!!!
Anyway the LLMD I am see for first time this coming week does takes insurance. Will his approach be very aggressive? I don't know. Long term? Yes-from what I read online.
Apparently the LLMD is well known by and hated by local areas ID specialists and neurologists.
One thing I am concern about is-will am I able to keep PICC line in after neurologist is done with me so I can continues IV antibiotics with the LLMD?
Oh, night sweats-I had them chronic for 10+ years, incluiding drenching ones where i may have to change PJ and sheets twice a night. It all went away this past fall. I wonder why. If it was due to babesia, did doxycycline kills them? Or did it force them into hiding?
By the way, while I had them do not have shortness of breath.
At the same time I'll try to push for longer IV treatment from neurologist--i.e. if he shows me new MRI that shows white lesions is improving--I'll acts like a kid when begging him---goody! give me more rounds, please!!!!!
Anyway the LLMD I am see for first time this coming week does takes insurance. Will his approach be very aggressive? I don't know. Long term? Yes-from what I read online.
Apparently the LLMD is well known by and hated by local areas ID specialists and neurologists.
One thing I am concern about is-will am I able to keep PICC line in after neurologist is done with me so I can continues IV antibiotics with the LLMD?
Oh, night sweats-I had them chronic for 10+ years, incluiding drenching ones where i may have to change PJ and sheets twice a night. It all went away this past fall. I wonder why. If it was due to babesia, did doxycycline kills them? Or did it force them into hiding?
By the way, while I had them do not have shortness of breath.
I was thinking of you yesterday and wondering how you are doing. I am so glad you have some concrete information! That is good news. And you are one of the few who test positive in the spinal fluid. Lyme docs say in their experience, only 10-30% do. It is a useless test if it is negative. But it is highly accurate when it is positive. That, plus your 18 & 41 bands does indeed confirm Lyme.
And it is very possible that your ongoing doxy did wake up the immune system to produce more antibodies. But doxy alone will not cure a long standing infection. Dr. Eva Sapi has done some amazing research on the spirochetes, and found that doxycycline caused a significant increase in the number of cysts (of spirochetes) formed. When the abx wear off, the cysts open up and convert back to spirochetes, and Bam! You are sick again.
When I was in your shoes, I was very stressed about cost and coverage. I was in the process of requesting an out of network referral to my LLMD. If that was rejected, then I planned to go to an ID doc who would hopefully give me IV Rocephin. Then, when s/he said I was done (probably 4 weeks), then I would go to the LLMD. That way at least the PICC line and initial month would be covered. In hindsight, this plan wouldn't have worked anyway, as I was CDC neg on my WB and neg in my CSF. I don't think any ID doc would have diagnosed me let alone treated me.
You, however, have a doc willing to treat you. :) I would just caution you that it is highly unlikely a month or two of Rocephin will cure a 10 year infection. You will most likely need to see an LLMD for sufficient treatment. I have had Lyme and Bartonella for 6 years, chronically for 16 months before I was diagnosed, and my highly regarded LLMD estimated my treatment at 15 months.
Also, Babesia is hard to find in a blood test. Many people with Babesia will test negative. Even the CDC acknowledges this, but the IDSA continues to say this is an insignificant infection unless you don't have a spleen. Their recommendations don't even recommend testing for Babesia, unless the patient develops shortness of breath and night sweats AFTER being treated for Lyme. They refuse to acknowledge that the presence of Babesia can interfere with Lyme treatment. This is where a good LLMD becomes critical. Also, an unknown number of patients with Bartonella test negative for it. It is a great sign that those tests came up negative for you. It is easier to treat Lyme without coinfections.
You could try a local Lyme support group to see if there are any doctors in your area who are in your insurance network who will treat you more aggressively. I know a woman who found an in network doctor willing to treat her for four months, which is almost a miracle. The biggest cost is not the doctor's appointments, it is the cost of the medicines. If you can get that covered, it will make a huge difference.
Now you can shift your focus from getting diagnosed to getting treatment! That is a good step to take.
And it is very possible that your ongoing doxy did wake up the immune system to produce more antibodies. But doxy alone will not cure a long standing infection. Dr. Eva Sapi has done some amazing research on the spirochetes, and found that doxycycline caused a significant increase in the number of cysts (of spirochetes) formed. When the abx wear off, the cysts open up and convert back to spirochetes, and Bam! You are sick again.
When I was in your shoes, I was very stressed about cost and coverage. I was in the process of requesting an out of network referral to my LLMD. If that was rejected, then I planned to go to an ID doc who would hopefully give me IV Rocephin. Then, when s/he said I was done (probably 4 weeks), then I would go to the LLMD. That way at least the PICC line and initial month would be covered. In hindsight, this plan wouldn't have worked anyway, as I was CDC neg on my WB and neg in my CSF. I don't think any ID doc would have diagnosed me let alone treated me.
You, however, have a doc willing to treat you. :) I would just caution you that it is highly unlikely a month or two of Rocephin will cure a 10 year infection. You will most likely need to see an LLMD for sufficient treatment. I have had Lyme and Bartonella for 6 years, chronically for 16 months before I was diagnosed, and my highly regarded LLMD estimated my treatment at 15 months.
Also, Babesia is hard to find in a blood test. Many people with Babesia will test negative. Even the CDC acknowledges this, but the IDSA continues to say this is an insignificant infection unless you don't have a spleen. Their recommendations don't even recommend testing for Babesia, unless the patient develops shortness of breath and night sweats AFTER being treated for Lyme. They refuse to acknowledge that the presence of Babesia can interfere with Lyme treatment. This is where a good LLMD becomes critical. Also, an unknown number of patients with Bartonella test negative for it. It is a great sign that those tests came up negative for you. It is easier to treat Lyme without coinfections.
You could try a local Lyme support group to see if there are any doctors in your area who are in your insurance network who will treat you more aggressively. I know a woman who found an in network doctor willing to treat her for four months, which is almost a miracle. The biggest cost is not the doctor's appointments, it is the cost of the medicines. If you can get that covered, it will make a huge difference.
Now you can shift your focus from getting diagnosed to getting treatment! That is a good step to take.
I gotta to stop using my iPad-swipe my fingers, accidently hitting whatever and can't undo it. lol. Regardless, the answer you give is best answer if anyone wanted to know what their western blots results mean.
I supposed the explaination of CDC don't know is my neurologist's reasoning for not wanting to see even one lyme-specific bands in the spinal fluid.
I dont have classic rash-bull-eye, I don't if that's what the book is refers to.
My dermatalogist feel biospy is need but not want to do it because she thinks it may be all connected. She wanted to see what IV antibiotics will do with my skin conditions.
Meanwhile she is the one who put me on doxycycline last year, and still keep me on it. Blessing in disguise? As it "force" lyme disease out of hiding, and produce bands on western blot that was always clean in the past-hence missed for 10+ years.
I supposed the explaination of CDC don't know is my neurologist's reasoning for not wanting to see even one lyme-specific bands in the spinal fluid.
I dont have classic rash-bull-eye, I don't if that's what the book is refers to.
My dermatalogist feel biospy is need but not want to do it because she thinks it may be all connected. She wanted to see what IV antibiotics will do with my skin conditions.
Meanwhile she is the one who put me on doxycycline last year, and still keep me on it. Blessing in disguise? As it "force" lyme disease out of hiding, and produce bands on western blot that was always clean in the past-hence missed for 10+ years.
I forgot to mention, the book also says
The rash is considered prima facie evidence of lyme infection and ...does not require further tests to undergo a fulol course of lyme disease antibiotic therapy"
In other words, if you have the rash, that is undisputable proof you have lyme.
The rash is considered prima facie evidence of lyme infection and ...does not require further tests to undergo a fulol course of lyme disease antibiotic therapy"
In other words, if you have the rash, that is undisputable proof you have lyme.
Ditto everything youvegottobekidding says.
Also: you say: "Spinal fluid from April has bands 18 and 41 and it is the same with blood serum."
Spinal fluid is not terribly helpful in diagnosing or ruling out Lyme, bec. Lyme bacteria don't tend to live there. That said, my handy list of what each band means (printed out a while back from truthaboutlymedisease.com) says:
"Band 18: highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme)"
Also: you say: "Spinal fluid from April has bands 18 and 41 and it is the same with blood serum."
Spinal fluid is not terribly helpful in diagnosing or ruling out Lyme, bec. Lyme bacteria don't tend to live there. That said, my handy list of what each band means (printed out a while back from truthaboutlymedisease.com) says:
"Band 18: highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme)"
Spinal fluid from April has bands 18 and 41 and it is the same with blood serum.
Nonspecific bands were also detected in both spinal fluid and blood serum but it doesn't list them. I suspected nonspecific bands is indicative I am also infected with something else. Hopeful LLMD figure it out.
Infectious Disease specialist didn't say if any bands show up, but I knew better, and asked him to mail all copy of results to me. I should have them in my hands, hopeful before I see LLMD.
Nonspecific bands were also detected in both spinal fluid and blood serum but it doesn't list them. I suspected nonspecific bands is indicative I am also infected with something else. Hopeful LLMD figure it out.
Infectious Disease specialist didn't say if any bands show up, but I knew better, and asked him to mail all copy of results to me. I should have them in my hands, hopeful before I see LLMD.
Hi,
Can you find out which two bands were positive?
The CDC itself announced that their definitions of positive and negative for lyme are NOT supposed to be used for diagnostic purposes, only for gathering data on epidemiological studies (I know that's stupid, it means the spread of lyme disease is underestimated, but never mind).
In the past I have gone to various doctors behind each other's backs, and eventually abandoned the ones who were not helping me. When they are not very helpful that is sometimes what we have to do. If you are seeing a specialist outside their area of expertise, they have no right to complain. If you are seeing another doctor with the same speciality, well again, it is every patient's right to seek a second opinion if they are not fully convinced. You wouldn't buy a used car from the first dealer you come across, you shop around for what seems best for you, and I regard doctors like that too.
A lot of us get stronger positive lyme results and more positive bands after a bit of antibiotic treatment., so if you get retested by a LLMD after havinga bit of treatment, that may be a good thing.
I would strongly advise that you insist al the test results are sent to you. You can't accept "positive" or "negative"statements when it comes to lyme, you need to know the result of every band as issueed by the lab.
Good luck with it all Lilly, I know it is so horrible at this stage. Just be as persistent as you have to be, and when you have some certaintly and a good doctor, you wil feel so much more optimistic. I believe the stage you are at now is the hardest - it does get better from here.
Can you find out which two bands were positive?
The CDC itself announced that their definitions of positive and negative for lyme are NOT supposed to be used for diagnostic purposes, only for gathering data on epidemiological studies (I know that's stupid, it means the spread of lyme disease is underestimated, but never mind).
In the past I have gone to various doctors behind each other's backs, and eventually abandoned the ones who were not helping me. When they are not very helpful that is sometimes what we have to do. If you are seeing a specialist outside their area of expertise, they have no right to complain. If you are seeing another doctor with the same speciality, well again, it is every patient's right to seek a second opinion if they are not fully convinced. You wouldn't buy a used car from the first dealer you come across, you shop around for what seems best for you, and I regard doctors like that too.
A lot of us get stronger positive lyme results and more positive bands after a bit of antibiotic treatment., so if you get retested by a LLMD after havinga bit of treatment, that may be a good thing.
I would strongly advise that you insist al the test results are sent to you. You can't accept "positive" or "negative"statements when it comes to lyme, you need to know the result of every band as issueed by the lab.
Good luck with it all Lilly, I know it is so horrible at this stage. Just be as persistent as you have to be, and when you have some certaintly and a good doctor, you wil feel so much more optimistic. I believe the stage you are at now is the hardest - it does get better from here.
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He's a Ilads member doctor and the book presents the pooled wisdom of the research stars of Ilads on all aspects of Lyme.
He says
"Most lyme-aware doctors use labs that report all bands, including bands 31 and 34. Studies have shown that the most lyme specific bands are 18, 23-25, 31, 34, 39 and 83 - 93. Any of these, along with band 41 (which appears early) is strongly indicative of Lyme. I prefer seeing a positive band 41 plus any one other of the specific bands to consider a western blot positive. If other specific bands are positive but not 41, this makes me strongly consider it may be a false positive perhaps caused by viruses"
So, being positive for 41 and 18 means the ILADS line of reasoning would consider you an unambiguous positive.
Incidentally, the CDC contradicts itself for lyme disease testing.
It requires that you have no less than 5 bands positive, yet includes some that are NOT exclusive indicators of lyme disease, AND yet is recognises a positive ELISPOT test as positive proof of lyme disease. I have always had a positive elispot but only ever had 2 positive lyme bands in western blot. SO would the CDC accept I have lyme or not? Answer: they don't know!