posted
I've seen two LLMDs and have had severe cognitive impairment (absolutely no short term memory, extremely slowed cognitive function, brain fog, no concentration, etc), muscle twitches, dizziness upon standing, white tongue, and a drunk/altered/derealization feeling for almost two years now with no relief from treatment.
I've been on IV meds (almost 5 months), orals (10 total months), both, clean diet, exercise, detoxing, herbs, antifungals, everything I can think of. I had a really bad experience with my first LLMD who took me off antibiotics after two months. Then I went a whole year with no treatment until I went to another, who I've been with for about eight months.
He wants to take me off antibiotics because I have not responded at all. I've tested positive through igenex and cdc as well as a low cd57 which was just tested last week and was a 26 (through lab corp).
I feel that my situation calls for a top LLMD because I haven't responded to any treatment, I was most likely bit in Europe and have a european strain and/or coinfection, and I really believe my IQ has gone down by about 35 points. But most of all I think my situation is more than Lyme.
I'm scared I'm going to have permanent brain damage if I don't start seeing results soon. I tested negative for co-infections but have been treating bartonella for the last two months along with iv to no avail.
I'm willing to travel anywhere in the united states and pay any price to see one of the best LLMDs. I want a doctor who's up to date with everything and tests/treats every possible infection or virus that can go along with Lyme. (Candida, XMRV, mycoplasmas, all co-infections, viruses,even ccsvi procedure etc, etc, etc. (you see where I'm getting at?) Also, one who test with igenex and fry labs or any top lab for infections.
Really just a doctor who's known to cure or significantly treat patients who have not responded to previous treatment and know how to work with cognitive/neurological problems. The doctor doesn't necessarily have to be an LLMD neurologist just someone who knows how to treat bad cognitive problems.
I've had to postpone two years of graduate school because of my poor brain function and I personally don't think it's permanent damage and that I can get better but I need the right doctor. I'm sick of wasting time and money on doctors who treat half-ass and don't take their patients seriously. I just want to go to the top.
I'm willing to be put on a wait-list for a month or two but I also don't want a doctor who makes their patients be on a wait-list for 6+ months.
If anybody has ANY recommendation(s) please either send my a private message or respond. This is severely ruining my life. Please help.
Posts: 121 | From Houston, TX | Registered: Aug 2009
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posted
For now I think I should stick to a western medicine approach but I would up for a doctor who combines alternative with western
Posts: 121 | From Houston, TX | Registered: Aug 2009
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posted
I have looked into a bit. I'm not opposed to trying a rife machine but I think I really need a good lyme doctor right now as my current one wants to stop treating me.
Anybody else?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Have you treated the co-infections? I did not improve until I treated bart and babesia. I also felt like I lost IQ. In fact, I tested 20 points lower.
As for doctors, I agree you need to move on. Hope someone can suggest a good one. I will send you a PM about the two I saw - but do not necessarily recommend.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just want to say that you will wait longer than 2 months to see one of the top docs in the nation.
If you make a 1-2 month wait your criteria, you just can't get the best doc.
Think about it. You really want the best doc. Treat with someone else while waiting for the best doc, no matter how long the wait.
Posts: 9931 | From Maryland | Registered: Dec 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You need to find someone who will try you on antimalarials for Babesia. Many people test negative when they have it. Many, many people.
And continue Bart and Lyme treatment.
Your symptoms sound like the patients I know with B.duncani/WA-1, though there is lots of symptom overlap in TBDs.
You may not need the BEST doctor (though I encourage you to try), but you certainly need someone who understands and treats for co-infections.
posted
Bartonella is the only co-infection that I've treated... based on my symptoms I don't think I have babesia. Can babesia cause severe cognitive impairment?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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I know there's a lot of advice out there. Have you treated this or that -- all viable things to think about when attacking the disease.
I have made progress treating with antibiotics, but I think it's most important for me to discover how the disease is affecting me personally. Not just from a kill the infection standpoint, but from a what organs or part of the body need extra support view.
Many here have found out they we were hypothyroid and started thyroid treatment with success, or adrenal insufficiency. I personally am close to finding out what kind of damage was done to the pituitary gland that could be causing the leftover symptoms I haven't beaten.
My situation is specific to me, and not everyone else. I have done much research and because of events that have happened in my illness, it has lead me down this road.
But, what I'm really saying is, I find it really difficult to judge improvement without knowing exactly what's affected by the disease. Endocrine issues can cause a wide-array of issues, including cognitive deficits.
This is purely my own feeling regarding this illness. I used to be all about attacking the disease, now I want to know more about the affected organs and try individualized therapy to see if I can support the process, while ridding the body of infection.
Just my thoughts. Good luck.
Posts: 829 | From MD | Registered: Dec 2009
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quote:Originally posted by Knight33: Bartonella is the only co-infection that I've treated... based on my symptoms I don't think I have babesia. Can babesia cause severe cognitive impairment?
Probably! and if not, it will certainly make it impossible to get rid of the Lyme and bartonella if left untreated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Wolfed out - It did damage my thyroid... my doctor has prescribed me hypothyroid meds. I've been on them for about 8 months. Still haven't noticed any difference. Also had a full endocrine work up too.
Thanks so much for the advice. Anybody else have any doctor recommendation?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Did anyone recommend a doctor?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Yeah, who is the "best LLMD" ?
Dr H in NY?
Any other "best" ones out there?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
There could be a problem here. People might be reluctant to suggest their LLMD to you even though they believe that their doctor/s are the best, because they could be the best for me, but not the best for you...do you know what I am getting at?
Some people have an excellent experience with a particular doctor and then the next person might not care for them at all...we have seen contrasting opinions on Lymenet about this before.
I believe that my daughters doctors are the best for her...but they are also controversial.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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No memory of tick/rash. Sick 1/09. Diagnosed CFIDS 7/09. Diagnosed Lyme 7/10. Posts: 56 | From San Diego, CA | Registered: Jun 2010
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
It took me a year on antibiotics (and tons and tons of herbal and supplementary treatment with a lot of other stuff) to get rid of some of my symptoms and during some of that time some of the most severe symptoms didn't budge (and another year on even more aggressive antibiotics before I stopped having random relapses into disabling illness again). It sometimes just takes super aggressive multi-year treatment. Don't assume it's just the strain you have- it might be that your doctors missed something major because, as you suspect, they're not knowledgeable enough.
in my case, my first LLMD missed both babesia and bartonella symptoms. Treating both (mostly because I did my own research and figured out that's what was going on) and testing for the Clongen bug was what helped me figure out the right combination of drugs.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Also, I'm watching two experienced Lyme patient friends of mine start to see Dr H in California . I (and the other patient who really knows what he's looking at) both think he's the best around here. I personally still think that the East Coast guys have better experience. I now see the LymeMD blog author in Maryland, but he really dislikes seeing out-of-state patients for various reasons (I used to live on the East Coast and managed to talk my way into his practice due to DC area connections). I think Dr S from Maryland, the author of the Lyme Disease Solution book, and Dr H in NY, both sound like good ones to look into. I think tis hard to get in to see them, though.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Ya I'm looking into Dr. K. He has really good reviews from people. Do you see him?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I know a lady in Florida whose daughter was bit in Sweden. She has had such a hard time getting better and trying to identify the coinfection of ticks in Europe. I'm posting part of what she said: Last night we received lab results that my daughter has tested IgM positive for Brucella....that may be the case however, there is cross reactivity with E.Coli 0157, Francisella Tularenis or Tularemia, which quite a few people have with lyme or Maxella phenylpyruvica..and perhaps I am mis=spelling this....there is an article on a man with this whose heart valve was affected.....With all these co-infections we must be careful to figure out exactly what a person has....if we just think it is lyme we will not be looking for these other zoonotic diseases and may be treating long term with the wrong meds...
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I would go to Dr. K's clinic in Seattle.
That's where I am headed at the end of the month. I feel certain he is the right one for me.
For the initial visit, you do not get to see Dr. K himself. You see his personally trained staff (who I hear are great) who follow his protocols. You stay out there for 4 days of testing and treatments. Then they set you up with a protocol for the next 6 months. You can have phone consults during this time. For your 6 month follow-up, then you get to see Dr. K.
Read up on everything you can get your hands on about him.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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