phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Haven't been on in awhile hoping to report some good news.. I feel I am at a stand still with Lyme as seems everything I have tried hasn't been right or this is as good as I am going to get.
I can no longer afford a LLMD which I am sure I didn't have the right on as I found not much help with the doc I had except for the abx treatment which helped some but of course I wanted at lease a 90 % improvement..
I now have only one positive band (23 IgG) which still indicates lyme and was told this is one I will probably always have ..
My PCP is trying to treat my discomforts but admits she doesn't know what else to do..
So what to do ? I am taking supplements, vitamins, need to do better with my diet and take xanax for anxiety/sleep.. At my age I have come to the conclusion this is as good as I am going to get. Yes, I am better than I was but still so limited and have weeks in bed..
Anyone else trying to get through this without a doctor? or feel this is as good as it is going to get? The LLMD I was seeing told me I could only expect a 40% improvement so guess I have come that far.. tks..
Posts: 1058 | From VA | Registered: Oct 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Sorry to hear that your treatment has not returned you to health.
Stories like yours make me so angry at the IDSA ... because if it weren't for their narrow mindedness, more doctors would be knowledgeable in treatments that are most likely to "work" for Lyme victims, and INSURANCE would cover that treatment!
I can tell you, however, that using Xanax as a sleep aid is an "off label" use of that drug. It's not considered effective for that purpose - and further, the benzodiazapenes are highly addictive! (Know someone who got strung out on Ativan - which docs dish out like ice cream.)
Have you ever tested/treated for coinfections? Have you ever considered the possibility of a parasitic infection?
I'm sure others here could point you in the right direction to pursue alternative treatment methods. Don't throw in the towel!
Could you tell us about your most debilitating symptoms?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks Auntlynn, Yes have been tested for co-infections, bart, babs thru igenex..all negative .. I know test aren't always correct so have tried some natural treatments on my own..Also parasite treatments..
My most debilitating symptoms seem to be fatigue, body aches especially my legs, vision problems, weird head feelings , off balance, unable to sleep.. I am sure there are more as I seem to be like a roller coaster.. Oh the mental problems are the worst..
Due to my anxiety and agoraphobia I couldn't leave the house without xanax.. Honestly this med has given me what life I have back..
My PCP told me she couldn't give IV abx but would give me all the abx I needed and for as long but with me seems they haven't been that helpful ..So she asks me what to do..I admire her for admitting she doesn't know how to treat..
Tks for you reply..
Posts: 1058 | From VA | Registered: Oct 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Yes, Xanax and many other anti-depressants are what was given to my Mom, for "panic attacks" and anxiety caused by LYME! (Previously diagnosed as "Possible MS" and "Possible AZ!")
See PA Psychiatrist Virginia Sherr's articles on this:
Long term IV ABX seems to be the answer for ridding oneself of neuro Lyme, as IV crosses the blood/brain barrier best. If you have not been on these boards for quite some time, you have likely not seen the recent studies.
Int J Gen Med. 2011; 4: 639�646. Published online 2011 September 6.
Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease
RESULTS: For cognition, fatigue, and myalgias, the greatest improvement occurred in patients on the longest courses of treatment (25�52 weeks) ... In contrast, arthralgias were only significantly improved during the initial 1�4 weeks of therapy ..., and the beneficial effect of longer treatment did not reach statistical significance for this symptom.
DISCUSSION:
In conclusion prolonged intravenous antibiotic therapy is associated with improved cognition, fatigue and myalgias in patients referred for treatment of neurologic Lyme disease. In contrast, improvement in arthralgias did not persist after 1�4 weeks of therapy. Treatment for 25�52 weeks may be necessary to obtain significant symptomatic improvement in patients with neurologic Lyme disease.
The (E) Monkey Study (published Jan 2012), proved that the IDSA treatment protocol for Lyme (28 days oral doxycycline) failed to kill the Bb infections in 100% of subjects.
Moreover, the Klempner 90 day treatment protocol(30 days IV Rocephin followed by 60 days Oral Doxy) failed in 75% of infected subjects.
Seems as though you need to find a doc who is not afraid to prescribe long-term IV. (There are a couple of excellent ones in the DC area - But unfortunately, most of these practitioners are obligated to insist upon cash payments.)
So there is hope! For your sake, and for so many others like you, I hope it is true that the IDSA has recently agreed to "revisit" their treatment recommendations... so that more people can get well again!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Oh ... and then there's this!
After 22 Years of Being Battered by Lyme Disease, Woodbury Runner Is Liberated, Ready for New Hartford Triathlon June 25, 2012
posted
I feel your pain! I know how it feels. I can no longer afford to travel 1,500 miles to see my llmd either. I was traveling there 4x a year, then he reduced it to 2x. I was also taking my daughter with me for those trips so she could be treated too.
I do think my disease will probably not get any better than what it is either. I still use a cane on occasion, have fever, many many aches and pains and continual neuropathy in feet and hands and has spread from only below the knee to the whole leg and above now.
My pcp is new to me and of course is trying to treat all the "other" things for me. She doesn't believe lyme could be causing any problems for me at this point, as it should be "cured" by now. She's not mean about it, but that's the way she's been trained.
My neurologist believes lyme could not have caused any of my issues, as his "titer" test was -. He has searched and searched but found no cause for my neuropathy. He does not believe I have MS, which is actually a relief as the previous one did and was adamant I take copaxone for it,which supresses the immune system..not helpful to say the least.
My old PCP was like yours, he believed I had lyme but admitted he had no clue what to do. He was ok with me seeing my llmd, but he will not give me abx for "lyme" or anything else unless I have an acute infection. He has so many pt.s that he barely has time to say hi and what's wrong when you see him. This is why I switched and the new one is very thorough in her attentions, just not a believer that antibiotics are helpful to me at this point.
I really believed that my body needed a break from all the meds anyway, and I think it's been good after 4 or 5 years of taking high doses of abx and supplements. However, I feel that I will need to resume abx at some point as I feel the progress slipping away.
I tried IV abx at early in my treatment but they only worsened my symptoms. It would take 2 years I'm sure to make significant progress, and I don't have the funds for that. Insurance will not pay for any more IV. They made that very clear. Wouldn't even pay for penicillan shots either,short term.
I think my llmd left out treatment of coinfections and that may be why my progress was halted. I could not convince him to treat for anything the bloodwork didn't show. Even though he admitted the testing very faulty..come on!!
Self treating is scary..but when options are like they are, what to do? I don't know. All I can say is I understand exactly where you are coming from and wish you all the best!!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Twicebitten -
Your neuro sounds like a smart guy. Why don't you give him the links above?
This is what gets me so frosted about the IDSA and the "excuses" they create for Insurance Companies - when I "meet" folks like you two, who might be getting much more effective treatment, if it weren't for the money and the politics.
If you don't mind sharing ... how long were you on IV? And was it Rocephin?
According to Dr. S's study above (and an earlier one by Dr. F of Columbia), most folks don't even BEGIN to feel any improvement until they've been on IV for Four Months!
I guess best thing to do is to try to strengthen your own immune system, and keep inflammation to a minimum, if possible. I know my Mom improved noticeably w/in days when she took Cod Liver Oil (EFAs and natural Vit D) and a concentrated Tumeric preparation. She was also on B-complex, Vitamin E and Vitamin C (at least 1,000 mg)... but I know folks can take much more C than that, without any toxicity. (Even more would help to speed detox.)
My hands are similarly tied - because of the medical politics, and their LEGAL ramifications.
I ask heaven for a breakthrough for Lyme patients every night. We have some great doctors trying to help, but the politics will take some divine intervention.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Aunty Lynn, In response to your ?. I took IV Rocephin for 3 1/2 months. Highest dose, 4 days per week and took flagyl the other 3 days. I also took actigall and probiotics. My sister took a slightly lower dose of rocephin for over 6 months and got alot better. She did not have the neuro symptoms like I do though. I want to say my rocephin dose was 4 grams, hers was 2 I believe. It was back around 2003. My memory is not that great, but I'm pretty sure that was the dose. I opted to go with the higher dose and less time, as she had her own home health company and could alter her schedule more than I could.
I'm not sure giving the neuro any links would be a good idea. He was very hostile toward the idea of lyme causing any of my symptoms. I did not go in there to discuss lyme at all. He pressed me to find out my experience with it and asked me specifically what my llmd treated me with. When I told him he smirked and laughed.. Then after his 20 tubes of blood, EMG, and whatever, put me on b-2 riboflavin for 6 months to "see what happens", as he could find no other cause.
I've seen this attitude a number of times with conventional specialists and I have tried to give them info but they always take it as junk medicine. Writing things in my chart that make me seem crazy.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Yeah, 4 gms of Rocephin ... I didn't even know anyone would give you that much! (Highest dose I've heard of is 3 gms) ... maybe because it was pulsed?
Have you taken a look at the S**cker study, posted above, which looked at IV and neuro Lyme? Doc showed that a minimum of six months on IV was needed to get rid of neuro symptoms! Many of his patients needed a year of IV to get well! (And he said no one even started to lose symptoms, until four months IV!)
Glad to hear your sister did so well with her treatment.
OK, so your neurologist is actually a jerk - just like the three "neuro specialists" my Mom saw, before the fourth one ordered a spinal tap to "rule out" Lyme. But then, she only got 28 days of IV Rocephin (1 gm) before she was rudely moved out of state, and away from her treating neurologist!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
What good is a neurologist who doesn't know about neurological diseases like lyme? Who tests for everything, can't find another explantion, still doesn't see the light? Useless, I would have said.
I went to at least two insulting and stupid neurologists and have learned my lesson. If I should ever be exposed to insults and ignorance like this again I will tell those jerks off and never return.
And so-called doctors like this should never be given information about lyme treatment or the name of a lyme doctor.
Posts: 2888 | From USA | Registered: Mar 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ii know glm will stop by soon to suggest you tx parasites
im older-had it since 80's...did orals and then buhner and then my own combo of herbs
buhner really is good---smart guy-knows his stuff. he has a new book out...maybe that is an option...i always did him enough to feel better gradually but not herx
also-my first llmd tested my genes and because i had one he knew i would never get rid of joint pain...my lyme triggered arthritis and it is confirmed osteo and spreading so that is part of my future...i keep up on the best new stuff for osteo: cosamine, etc and surgery if necessary
then i had an experience of being on low dose lipitor for 6 months and i ended up in a wheelchair from a specific leg pain-i think it is muscle...maybe attachments but not joint. very specific. i had been in walker 3 weeks from this...stopped lipitor and walked alone 10 hrs later
i investigated and found this is a mitochondrial problem. there is a whole herb protocol to help this...i am better when i am on this but not "cured"...coq10 is most import for this but it is expensive and you need a lot
shoot-i had a 3rd point...something i got a handle on but forgot it. i wasnt able to read all above but thought you should know about my experience with these things in case you decide to self treat with herbs and supps
many get to a point where abx hurt more than help...we're all different
ps---also a friend was stuck until he removed all root canals and amalgams...he had a very bad mouth...poor dental care when younger so it seemed to make a big difference
and simple things like lots of good quality sleep, very low or no processed food and no sugar make an immedieate difference in how i feel
good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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