Have been seeing a top Lyme doctor for 1 year. At yesterday's appt., the first thing he asked, was, 'Why do you think you are still sick/have not improved?'
I don't know. That's why I went to see him.
He also asked, 'What do you want to do now?'
Isn't he supposed to tell me?
He said that one option is quit all treatment and see what happens. That surprised me. I asked what would happen? He said the immune system may take over.
I said I didn't want to quit as I am too sick. He said I could try Claforan injections, IVs, continue with anti-biotics or quit.
I have many of Lyme's neurological symptoms. I can't work or do much of anything thought I try. After 1 year of anti-biotic meds rotation, I am no better. That's ok, I didn't expect a miracle. I do all the extras: vitamins, detoxing, essential oils, organic diet, juicing, etc.
From what I've been able to read, I thought you are usually on meds, shots, IV's or something for years before you quit everything.
I don't know what to do. I feel like he doesn't like me or has given up on me. When I see him, I always try to be concise, polite and even had my mom type up the questions I had for him. I had a brain MRI done in April that showed some issues. He didn't even look at the scan or radiology report. I was the last appt. of the day. Maybe not a good idea. I'm paying $300 plus hotel and gas everytime I see him. This is money I really don't have.
Very dejected. Feel like I'm floundering.
Has anyone done the Claforan shots? Does Medicare pay anything? I know they don't pay for more than 1 month IV's.
May God bless each of you who reads this post.
Posted by Lymetoo (Member # 743) on :
I would make sure to get treated for all possible coinfections. Especially babesia, which can hold you back from beating Lyme.
What are your worst symptoms??
-- for me, one month of IV would be a waste of time.. I wouldn't do it
it took me 2 yrs to really feel any better
Posted by Ellen101 (Member # 35432) on :
I think perhaps you need to get a second opinion. I'm not sure what state you are in, but are there other LLMD's in your area?
Posted by glm1111 (Member # 16556) on :
Look into treating parasites with antiparasitic herbs or pharma antiparasitics. Parasites/worms can be considered a co-infection of Lyme and is often overlooked even by the best LLMDs. Do a search on here for parasites and also google parasite symptoms.
Gael
Posted by YinYang (Member # 36358) on :
I was in your same boat. I found out I wasn't appropriately treating for Babesia and have been seeing improvement since I've started an appropriate ABX combo.
I'd make sure you are treating for co-infections, as Lymetoo said.
Posted by Lymedin2010 (Member # 34322) on :
Welcome to the club. I am past my year mark too & feel the same.
I am trying herbals & other routes in conjunction with ABX now. Salt C, Artimisinin, Cryptopelis, Sida Acuta, & Ivermectin.
I will try Colloidial Silver next. Better to hit them from all angles & rotate. Judging by my LLMD & others, there is a lot of guess work & many unknowns.
I actually herxed on Salt C, Art, & Ivermectin. I do not herx much on any ABX, only 2 of the many I have taken & the herx is short lived. Then comes the silence, but migrating symptoms.
Push forward and keep trying new things. Salt C with antiparasitic and Colloidal Silver are for long term, at least 8-12 month treatments & perhaps even longer.
Posted by Sammi (Member # 110) on :
I agree that getting another opionion would be a good idea.
Posted by Robindeneen (Member # 32307) on :
Thank you for such a prompt response!
So did you stay on meds or do shots?
I can't believe he would tell me an option is to just quit. I would never do that.
Symptoms: most are on my left side or in my head: blurred vision, trouble focusing on an object or person, left eye pulls or feels draggy, tinnitus in left ear, brain fog and lack of clarity, difficulty in doing sequential tasks, organizing things, extreme sensitivity to noise and movement, left arm and leg feel weak and numb. Trouble swallowing too.
I told him I have 7 cats and herxed while on Cipro. He said that could be Bartonella, (I think that was it). He hasn't really mentioned co-infection treatment. He asked if I had done allergy testing and I have, but he wants me to have more extensive testing. I will do it. He's always writing things down and then is signing off on a group of presriptions for me. They're handed to me, but no one goes over them. I get handouts too, but it's so hard to read them and know what I'm supposed to do.
I have a terrible time trying to be online due to my vision so researching Lyme is difficult. Makes symptoms much worse.
Posted by laurie sm (Member # 14584) on :
Do not stop treatment! I felt worse after a year too. Then I did 6 months of IV Rocephin and finally saw some improvement. It has taken me almost 5 years and many other treatments to feel well. It takes a very long time and numerous doctors and treatments to start feeling better Don't give up and I would go to a new dr. if he thinks you should stop treating and let your immune system kick in. Good Luck!
Posted by sammy (Member # 13952) on :
It is scary but sometimes stopping and taking a brief break (only a couple weeks) can allow you to see what true symptoms are left. This will eliminate the possibility of herxing and side effects. When you see what real symptoms are left your doctor will be able to better identify what is causing them. This may help direct future treatment.
If you do need more Lyme treatment, which it sound like you probably do, claforan is a good option. It is similar to rocephin. This may help get you over your plateau.
As others have said, make sure that coinfections have been addressed. For me, they often cause more symptoms than Lyme itself.
If you need a fresh perspective, consider seeing a "new LLMD", someone still learning, empathetic, open minded, willing to work with you to try new things to get you better.
Posted by Sammi (Member # 110) on :
I agree with sammy about co-infections. I also have more severe symptoms from co-infections than from Lyme.
Many doctors believe the co-infections need to be treated first for Lyme treatment to be effective.
Posted by Robindeneen (Member # 32307) on :
My goodness, I'm humbled by the responses so many of you good people have sent.
This may sound like a silly question, but how am I supposed to get treated for co-infections?
I had all the IGeneX bloodwork that didn't show any co-infections.
In my brainfogged haze, I need clear, simple directions as to what to do. I promise to follow through.
Many thanks!
Posted by Sammi (Member # 110) on :
I think a knowledgeable doctor will know if co-infections are a possibility by your response to treatments and your symptoms.
Sometimes when people are not responding to Lyme treatment, it is because of co-infections.
Posted by TerryK (Member # 8552) on :
Haven't read all the replies but I wanted to say that I didn't start seeing significant improvement until the 3rd year of treatment. My main problem was toxins. When you kill you need to get rid of the toxins since they are what cause many of the symptoms. Some ppl can get rid of them better than others.
You may need binders and many other things to help your body recover from this very toxic infection.
As tutu said, co-infection treatment is critical.
In my opinion it is waaayyyy too early to stop treatment. I'd find another LLMD who can give you more options.
Terry I'm not a doctor
Posted by Tammy N. (Member # 26835) on :
Parasites! Parasites! Parasites!
I have to echo what glm1111 said above. Please do not overlook this most important (and often overlooked) infection. glm was sick for over 30 years, tried everything, and did not get better until she finally started treating parasites. She is now well.
I have been sick for over 16+ years and am now finally seeing major improvements since starting aggressive parasite treatment about 10 weeks ago. I believe this is perhaps the primary infection that is keeping all of us sick and unable to fight off the Lyme and co-infections.
I cannot overstate this. Hope this leads you to a promising path.
My main symptoms were mostly neuro. Now they are way down.
Oh, and the cats. You have to deal with that also. We have 3 cats (against the advice of our doctor). But we do A LOT to keep ourselves safe from getting ill from them. We put on small French doors to our bedroom so they can no longer go in there, ever. We always wash our hands EVERY time we handle them. And we change into clean bedclothes before going to bed. Oh, and we started treating them monthly for parasites. SOOOO IMPORTANT!!! All "the best" Lyme docs say no cats for Lyme patients. We do not feel this is an option for us, so in the meantime we do everything in our power to co-habitate in a healthy way.
Posted by annxyzz (Member # 20404) on :
There are many more doctors coming out and saying that ABX do not work for lyme that is not DXed early . I have read hundreds of posts here of people not well after years of several different kinds and COMBINATIONS of drugs. I am not saying they never work- but I can not see that they work very often .
I took abx 3 years and got rid of pain , but felt as sick after 3 years as the day I started and had a gut feeling they were never going to make a huge difference for me . They never helped my fatigue at all . The only thing that has ever improved my fatigue is IVERMECTIN . I stopped it after 4 months because I did not know if it was safe long term. The fatigue came back . ( I am starting it again. )
I am no doctor but after many problems from ABX and the failures I read constantly , I might try them a while longer but not indefinitely . I have read a million posts saying "relapsing after stopping ABX , mepron etc..." Taking them does involve risk . There have been 2 cases of flesh eating bacteria in my AREA where women have lost MULTIPLE LIMBS. There is also the risk of kidney and liver problems and constant fungal infections ( which I had ) .
One thing to consider is the Zhang herbal protocol . Zhang is respected in the med world and I have read more improvement stories here assoc with him than with any "LLMD " . Frankly every person I know with an LLMD has not improved a whit , with the exception of a lady who has been treating parasites with fenbenzadole and ivermectin . I know NO ONE who has made great progreess with LLMD personally , though Lymetutu is an example of someone who did improve .
Last , I would listen seriously to GLM and her advice ( gael) on parasites . There are several people posting here who have been extremely ill and who are getting better while addressing parasites . I thought the whole idea was ridiculous until I gave in and tried parasite meds and saw them . I scoffed at the notion of parasites in the US , but I am beginning to think they are a HUGE problem and maybe the reason people STAY SICK after ingesting every imaginable ABX available !
Some docs in Europe are seeing patients improve with doxy and ivermectin, according to Dr Eva Sapi . Parasites will usually not die if you take a million ABX pills .
My opinion is not worth a whole lot , but I do not see anyone I know making great strides on ABX or with most LLMDs. Just stating my own experience . God bless you in your journey .
Posted by AuntyLynn (Member # 35938) on :
Co-Infections, possible parasites, or just too damned little IV! Choose your path.
Neuro Lyme needs something that crosses the blood-brain barrier, and the best way to do that is IV - but it's got to be long term, according to the latest Dr. S study. 6-12 mos. minimum! Otherwise, you are just spinning your wheels with neuro encephalitis.
Sounds like your doctor is at a loss, and it may be time for a second opinion. (Someone who will test/challenge co-infections?)
Meanwhile treating for parasites is something you can do with over the counter remedies, and cheaply, but I would not stop taking abx compeletly, if I were in your stead.
I wish you every success!
Posted by Sammi (Member # 110) on :
There is a lot of good advice here; however, I do not agree that "all the best" Lyme doctors say that Lyme patients should not have cats.
Posted by AuntyLynn (Member # 35938) on :
Manybites -
Thank you for sharing your important story.
Babesia is a stubborn foe.
Dr. H said 19% of the patients he treated in the past year, tested positive for Babesia. They live along the Eastern Seaboard, and into Canada.
It has been found in the blood supply. (NYT Science article 7/31/12)
Posted by glm1111 (Member # 16556) on :
I got rid of the co-infections by treating parasites. Dr. K. treats parasites FIRST and Lyme and co SECOND.
Gael
Posted by AuntyLynn (Member # 35938) on :
Exactly. And although I do not have first hand experience, I would think that treating parasites and Lyme at the same time would be asking for a Major Herx.
Posted by Catgirl (Member # 31149) on :
We've all been bitten by ticks. Ticks carry parasites. It all makes sense. I don't know why the lyme docs are so clueless about this stuff. Just listen to what Gael and Tammy are saying.
I would probably change docs too. Asking you why you're not better is bunk. You need someone more compassionate than that.
You may have methyl issues in regards to detoxing etc. Has your doc done a full methyl panel on you yet? I remember reading that Nefferdun said she was just guessing on what to take until she did that. Now she is much better.
You may also have protomyxzoa (FL1953). More and more lyme patients are turning up with it. You can test yourself for this by just eating no more than 15 grams a day of fat. This is a no brainer. Anyone can try this: http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/118389?
I think some people eat a bit more though. Neff said she feels so much better now. The fat feeds the bug and makes biofilm grow 100x faster.
And cats. We have cats. I can't tell you how much pleasure they bring us. It is so fun to play with them (ribbon). We vacuum, give them front line, get them wormed, don't let them outside, and clean their litter boxes. I am getting better, and we sleep with our cats. My husband is getting better too. So don't believe everything negative you hear.
Posted by sammy (Member # 13952) on :
My "Top" LLMD says that pets are good for health.
My cats make my life better. They are hilariously entertaining and comforting when I feel bad. They are good companions.
Posted by Marrit (Member # 25454) on :
Take your radiology report and MRI scan to a specialist who can read and understand it. Not just anyone can understand those reports, and it's unlikely your Lyme doctor can from the sound of things.
Get copies of all your records and labs and read them. Take a long break from abx, which can further damage your nervous system irreparably. Finally, find another doctor. You might have something else going on.
We tend to blame Lyme or CFIDS or whatever for everything that is wrong, but there could be multiple unrelated issues each of which needs separate attention.
Posted by hopeful4 (Member # 8486) on :
Hi Robindeneen,
People have given lots of good ideas here.
Earlier you asked:
"This may sound like a silly question, but how am I supposed to get treated for co-infections?
I had all the IGeneX bloodwork that didn't show any co-infections."
Often the tests may not detect the co-infections. My doctor treated me for the co-infections even though my testing was negative. I was definately treated for Babesia and Bartonella, although testing was negative. I had mycoplasma detected, and was treated for that.
What about systemic yeast infection, has that been treated? This could be adding to your brain fog and cognitive problems.
I would strongly consider finding another LLMD. Is there a Lyme support group in your area? Often that's a good way to find out more about possible LLMDs to see. It sounds like your doctor is missing some important steps in the protocol, and is not working well with you in the communication department.
Best wishes to you.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Sammi: I think a knowledgeable doctor will know if co-infections are a possibility by your response to treatments and your symptoms.
- I know your LLMD DOES treat for all coinfections, regardless of test results.
Maybe you didn't recognize which meds those were when you were taking them.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by AuntyLynn:
Dr. H said 19% of the patients he treated in the past year, tested positive for Babesia. They live along the Eastern Seaboard, and into Canada.
- I got babesia in Texas.
Posted by Lymetoo (Member # 743) on :
HOPEFUL is right about the possibility of systemic yeast causing your symptoms.
Posted by AuntyLynn (Member # 35938) on :
quote:Originally posted by Marrit: Take a long break from abx, which can further damage your nervous system irreparably.
I wholeheartedly DISagree with this statement!
Kindly substantiate your assertion that abx damage the nervous system! FACTS please!
And ... This doctor has prescribed THREE GRAMS of Ceftriaxone - which, to my knowledge, is the highest daily dose docs will prescribe for Lyme! (Most docs start with ONE gram!) Obviously, the attending physician believes his patient has a SEVERE infection ... which he is trying to bring under control!!
FACT is LYME damages the nervous system!
Have you ever read the LABEL or the INSERT that comes with EVERY antibiotic?? It basically says "Take ALL of this prescription until it is finished" !!
If you stop abx MID-COURSE you can wind up with a SUPERinfection! Because the pathogens are "fighting back" by trying to INCREASE their colonies to "overgrow" the attack by the abx! If you stop mid-course ... you are inviting a RUNAWAY INFECTION! Geessh!
Posted by AuntyLynn (Member # 35938) on :
[/QUOTE]- I got babesia in Texas. [/QB][/QUOTE]
Not surprising Tutu! Dr. H said his PATIENTS he tested lived along this corridor. Undoubtedly he did not mean that babesia was only found along the Eastern Seabord.
Sorry if that statement seemed a bit confusing.
Posted by Catgirl (Member # 31149) on :
Lymetoo, did you ever find out if it was duncani or microti (I used to live in TX)?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Catgirl: Lymetoo, did you ever find out if it was duncani or microti (I used to live in TX)?
Microti
It can be acquired thru mosquito bites too, right? I grew up in Houston.
Posted by Catgirl (Member # 31149) on :
I don't know for sure (wouldn't be surprised though).
Posted by CherylSue (Member # 13077) on :
Well, if your LLMD doesn't know how to treat, find another one. I'm on my third LLMD, and he treats all the infections aggressively.
It was 18 months of abx treatment before I saw important improvement. You just have to hang in there and be patient. You need to find the infections through diagnostic testing with Lab Corps Labs and others.
Posted by poppy (Member # 5355) on :
I would be wondering if something else is going on, not associated with your treatment. Don't know where you are but some doctors are being persecuted for treating lyme longterm. When this happens, doctors sometimes back off, and sometimes even quit treating lyme because they are afraid of losing their licenses, which has happened.
Perhaps this is not the case now, but it has happened before.
And if you were on cipro during your treatment, you were being treated for bartonella. This is not a lyme drug.
Posted by Ellen101 (Member # 35432) on :
I would definitely see someone else. For the amount of money you are spending you have a right to his full and undivided attention regardless if you are the first or last appt of the day!
As far as the MRI, you said there were issues with it, what kind? Did you specifically ask him about the findings? It is possible if you read the report that you may think something is an issue when in fact it is not. When I received my MRI report prior to seeing my LLNP I was really concerned about some of the findings. Upon seeing her she informed me that the findings were totally normal and nothing to worry about.
After a yr of treatment with no improvements at all despite various types of abx perhaps it is beneficial to seek other opinions as well.
Posted by TF (Member # 14183) on :
I can really relate to your post. Recently, I got the distinct impression that my ENT didn't want to treat me anymore.
When I told my friend about what happened (she sees him too), she said, "You need to get a second opinion."
I told a doctor friend about what happened, and he said, "He is trying to get rid of you."
My husband also thinks I need to leave this guy and get a different ENT.
So, I would say, when you get the impression that the doc doesn't want to treat you anymore, take the hint and find yourself another doctor.
I know how horrible it feels when this happens. You feel abandoned, left floating out in the ocean, etc. But, even when I was treating lyme and this happened, it turned out to be the best for me. I switched lyme doctors and it was the best lyme decision I ever made.
Too bad you aren't local to me. I could give you some good names.
The patient should not be asked how they want to treat! You are paying the doctor to figure out the best treatment for you! If you do the picking, then I guess the doc doesn't have to feel responsible for what happens any more? Ridiculous. Time to go.
You gotta know when to hold 'em and know when to fold 'em.
Posted by poppy (Member # 5355) on :
Moving on is sometimes the right thing, as TF said. I was anorexic from babesia and my back was so bad I couldn't drive to the doctor without stopping every 15 minutes, for about 6 hours one way. The doc had been disciplined before and was afraid to treat more aggressively. I liked him a lot and he helped me as much as he could, but I could see I would have to go elsewhere.
Two other doctors really didn't want me as a patient, think they were experiencing some burnout, and I had made long trips to see them. So, I moved again and found the only doctor who really understood my situation and had treated others like me. So, in the end, it turned out for the best.