Aa
Not feel optimistic about LLMD
I saw LLMD today for first time. He is one of referral given to me by ILADS, and Empire Lyme Diseases Assoication.
He seems nice. I had interpeter with me, paid out of my pocket. However, by end of the visit, I felt disappointed.
It seems he hasn't read the note I sent him with his questionarrie.
He is happy that I am getting IV antibiotics treatment. He felt, if it is rocepin, by itself is adequate.
He wanted to upped dermatalogist's doxycycline rx to 400mg a day, but stop it when I starting the IV, and then when IV stopped, go back to doxycycline 400mg.
I asked him about cyst form--I wanted to prevent that. He says it take a "perfect" storm for cyst form to burst, it seems he isn't concern about spirochete cyst form. That make me nervous. It seems he just wanted to supress the lyme rather than eradicate it, or it may be that he thinks it cannot be eradicated so suppression is the only way to go. I dont know.
It also seems he is one antibiotic at a time approach to start, not combination of dissimliar antibiotics (as suggested in ILADS guide. I am not comfortable with that. I wanted aggressive approach. I am 34, I don't have the time for drag out slow treatment.
He is sent my blood work to Igenex for lyme. Local lab for CBC, Metabolism, endocrine. I also saw he is checking for viral-EBV and such. He doesn't order test for co-infections.
Other than that, I feel he ignore the fact I am 34, I wanted to have energy, clear skin complexion, so on, to recover as quick as possible, so I can develop my business and have my own family before it is too late. He asked me what my top three complaints-I told him fatigue/phyiscal weakness, neurological symptoms, skin conditions, and fourth being infammmed sinus.
Must I go to the one in NYC that does not take insurance for aggressive combination treatment, and they told me medicare (Original Medicare) will not cover treatment they prescribed (IV treatments)?
It would burn through my portfolio as I don't have credit history to be approved for credit card with higher limit, let alone any line of credit or loan to pay back from my portfolio. My relatives won't cosign with me even athough they know i can pay them back over the time with my large portfolio.
My aunt called asking me this evening on how doctor appt went. I told her. She say empathize with me--medical treatment being expesnive, I have no choice but try this LLMD, and neurologist's approach.
Aunt says she feel frustrated with her own health problems-she couldnt go out anymore, etc.. I pointed out to her, and remind her again and agian-I am only 34, and she already had life--she has children, grandchildrens, owned business, and supportive relatives--I may never will. Then she ask me if I am see my psychologist tomorrow, and hang up on me.
My psychologist has one patient who see the same LLMD, she is in her second year treatment now, and advised me the doctor heavily relies on oral antibiotics, but didn't tell me it is one antibiotics at a time.
I feel like I am being played by my psychologist, she is just stringing me along, give me false hopes, force me to accept lesser of two evils again and again, to prevent me from thinking about killing myself. She wanted me to accept life as is, it is rotten luck. I felt insulted when she felt for me owning business is enough to make me happy even if i don't have my own children, or spouse or clear skin complexion.
I have gone through so much I know what's valuable or important to me-bullying(childhood), being deaf, being adopted, being serious ill, losing my Mom to cancer, and now this.
Own business is just a job. Living for relatives who does not communicate with me nor truly give me the support in the way I need it? Friends is not same as close relatives or spouse.
I am feeling more depressed now--much more less optimistic.
He seems nice. I had interpeter with me, paid out of my pocket. However, by end of the visit, I felt disappointed.
It seems he hasn't read the note I sent him with his questionarrie.
He is happy that I am getting IV antibiotics treatment. He felt, if it is rocepin, by itself is adequate.
He wanted to upped dermatalogist's doxycycline rx to 400mg a day, but stop it when I starting the IV, and then when IV stopped, go back to doxycycline 400mg.
I asked him about cyst form--I wanted to prevent that. He says it take a "perfect" storm for cyst form to burst, it seems he isn't concern about spirochete cyst form. That make me nervous. It seems he just wanted to supress the lyme rather than eradicate it, or it may be that he thinks it cannot be eradicated so suppression is the only way to go. I dont know.
It also seems he is one antibiotic at a time approach to start, not combination of dissimliar antibiotics (as suggested in ILADS guide. I am not comfortable with that. I wanted aggressive approach. I am 34, I don't have the time for drag out slow treatment.
He is sent my blood work to Igenex for lyme. Local lab for CBC, Metabolism, endocrine. I also saw he is checking for viral-EBV and such. He doesn't order test for co-infections.
Other than that, I feel he ignore the fact I am 34, I wanted to have energy, clear skin complexion, so on, to recover as quick as possible, so I can develop my business and have my own family before it is too late. He asked me what my top three complaints-I told him fatigue/phyiscal weakness, neurological symptoms, skin conditions, and fourth being infammmed sinus.
Must I go to the one in NYC that does not take insurance for aggressive combination treatment, and they told me medicare (Original Medicare) will not cover treatment they prescribed (IV treatments)?
It would burn through my portfolio as I don't have credit history to be approved for credit card with higher limit, let alone any line of credit or loan to pay back from my portfolio. My relatives won't cosign with me even athough they know i can pay them back over the time with my large portfolio.
My aunt called asking me this evening on how doctor appt went. I told her. She say empathize with me--medical treatment being expesnive, I have no choice but try this LLMD, and neurologist's approach.
Aunt says she feel frustrated with her own health problems-she couldnt go out anymore, etc.. I pointed out to her, and remind her again and agian-I am only 34, and she already had life--she has children, grandchildrens, owned business, and supportive relatives--I may never will. Then she ask me if I am see my psychologist tomorrow, and hang up on me.
My psychologist has one patient who see the same LLMD, she is in her second year treatment now, and advised me the doctor heavily relies on oral antibiotics, but didn't tell me it is one antibiotics at a time.
I feel like I am being played by my psychologist, she is just stringing me along, give me false hopes, force me to accept lesser of two evils again and again, to prevent me from thinking about killing myself. She wanted me to accept life as is, it is rotten luck. I felt insulted when she felt for me owning business is enough to make me happy even if i don't have my own children, or spouse or clear skin complexion.
I have gone through so much I know what's valuable or important to me-bullying(childhood), being deaf, being adopted, being serious ill, losing my Mom to cancer, and now this.
Own business is just a job. Living for relatives who does not communicate with me nor truly give me the support in the way I need it? Friends is not same as close relatives or spouse.
I am feeling more depressed now--much more less optimistic.
Yes plaquenil is a cyst buster. I took that for almost a year to bust cysts, in place of artemisia. My doc said they are equally effective.
*Sigh* I don't know what to think anymore.
I found out this late afternoon, they change from PICC to midline for me. Apparently my neurologist isn't planning on longer than 4 weeks of Rocephin IV at this point.
I am hoping, I really do, he'll change his mind with reevaluation after the first round and give more rounds of Rocephin IV with PICC put in.
I am see conflicting info on Plaquenil, whether it is cyst buster--I am hoping it is because I am on it for a different reason. LLMD didnt say anything about Plaquenil, so I am wondering.
I found out this late afternoon, they change from PICC to midline for me. Apparently my neurologist isn't planning on longer than 4 weeks of Rocephin IV at this point.
I am hoping, I really do, he'll change his mind with reevaluation after the first round and give more rounds of Rocephin IV with PICC put in.
I am see conflicting info on Plaquenil, whether it is cyst buster--I am hoping it is because I am on it for a different reason. LLMD didnt say anything about Plaquenil, so I am wondering.
I wouldn't rely *solely* on word of mouth: patients may stay with ineffectual or incompetent docs because the doc has a good bedside manner or fits the patient's preconceived notions of what sort of treatment the patient prefers.
I've seen plenty of useless docs with fancy credentials, and also seen modestly credentialed docs who thinkly wisely and creatively. It has to be a balance.
I've seen plenty of useless docs with fancy credentials, and also seen modestly credentialed docs who thinkly wisely and creatively. It has to be a balance.
My Bart's impacted me in a more negative way then the Lyme, I have never heard of a real LLMD not even considering a co-infection
Try a local Lyme support group again and see if you can get an answer from someone on who is really good at treating Lyme. A personal referral is better than a list of names. It sounds like the one you saw is decent about diagnosing it, but doesn't go beyond the standard in treating it.
I am so sorry to hear about your disappointing doctor visit. It doesn't sound like he really follows the ILADS treatment approach. Doxycycline has been shown to encourage the spirochetes to form cysts. I know someone who had Lyme for a couple years and then just took doxy for 3 years. She is still sick. IV Rocephin is apparently the best at killing the bugs effectively, which is why it is the primary treatment when there are neuro symptoms. But even that can take months. (Although, a longer course of various orals can work, too. )
Sounds like you need to find a new doctor. What a hassle!
Sounds like you need to find a new doctor. What a hassle!
My LLMD didn't use any herbals like artemisia, but instead used pharmaceutical (man-made) drugs to disrupt the cysts. So yes, that aspect needs to be addressed, and there are different approaches.
I am so so sorry to hear about this.
I do agree with Jackie, I would not personally be happy with this doctor's approach and I would waste no more time with him, but go straight to another doctor.
I was also told the same thing about co-infections: you need to treat them at the same time as lyme, or even first, and that has been how it has turned out for me, that you cannot get the lyme under control without tackling co infections.
I would be very worried indeed about taking abx without artemisia to bust the cysts. I think that would be building a time bomb for later. I have always been told that if you take abx without someting for the cysts, you actively force the borrellia to go into its cystic form and then it lies in wait till you just can't cope with it . i.e. bursts out when you get another illnes or an operation or whatever.
I do agree with Jackie, I would not personally be happy with this doctor's approach and I would waste no more time with him, but go straight to another doctor.
I was also told the same thing about co-infections: you need to treat them at the same time as lyme, or even first, and that has been how it has turned out for me, that you cannot get the lyme under control without tackling co infections.
I would be very worried indeed about taking abx without artemisia to bust the cysts. I think that would be building a time bomb for later. I have always been told that if you take abx without someting for the cysts, you actively force the borrellia to go into its cystic form and then it lies in wait till you just can't cope with it . i.e. bursts out when you get another illnes or an operation or whatever.
"I read it may be important to treat coinfections at the same time or first before treating lyme itself."
That was what my Lyme doc did: babesia first, then Lyme.
Lyme can be a longer treatment time than the co-infections, so waiting to treat other infections until Lyme is gone? Hmmm, not so much.
That was what my Lyme doc did: babesia first, then Lyme.
Lyme can be a longer treatment time than the co-infections, so waiting to treat other infections until Lyme is gone? Hmmm, not so much.
He didn't say anything as such, he just asked me to try it (higher dosage of doxy), stop it with start of IV, then restart it with stop of IV, and see what happens.
Oh by the way, he also does not test for co-infections(enhlirncha, anaplasma, myocplasma, rocky mountain fever, etc..) at this time, he say he may do it at later date after he get the copy of negative result from infectious diseases specialist on babesia and bartonella(regular lab, PCR/blood smear, not specialty lab) because he does not wanted to retest for the same thing. He say it is important to treat lyme first.
However I read it may be important to treat coinfections at the same time or first before treating lyme itself.
Oh by the way, he also does not test for co-infections(enhlirncha, anaplasma, myocplasma, rocky mountain fever, etc..) at this time, he say he may do it at later date after he get the copy of negative result from infectious diseases specialist on babesia and bartonella(regular lab, PCR/blood smear, not specialty lab) because he does not wanted to retest for the same thing. He say it is important to treat lyme first.
However I read it may be important to treat coinfections at the same time or first before treating lyme itself.
If you don't feel comfortable with you doc I think for your own peace of mind, try to get another one. I do know that there is not just one protocol to follow, my LLMD says if I feel nothing is happening we try another one, however, if I didn't trust her I would feel as you do. That relationship is important. Did He/she mention doing other things if you get no results from the current protocol?
Get another name from ILADS or do some digging around online to find a different LLMD in your area.
ILADS is not a guarantee that a doc will be perfect or even any good. Much is unknown about Lyme and its co-infections, and there is not a one-size-fits-all approach to treatment. The doc you saw seems to have an approach that doesn't suit you. I don't think it would have suited me either.
I would find another Lyme doc. Yes, it's expensive, and yes, it's a hassle. I don't know of any other way to make it happen, so just do it. **You can.**
ILADS is not a guarantee that a doc will be perfect or even any good. Much is unknown about Lyme and its co-infections, and there is not a one-size-fits-all approach to treatment. The doc you saw seems to have an approach that doesn't suit you. I don't think it would have suited me either.
I would find another Lyme doc. Yes, it's expensive, and yes, it's a hassle. I don't know of any other way to make it happen, so just do it. **You can.**
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